Everybody has a story to tell. Some people have a need to tell it, others don't. I have been trying to tell my story for over ten years now. In 1998, when I was diagnosed with a rare form of childhood bone cancer called Ewing's Sarcoma, I decided that I needed to leave a trace of myself behind if I should happen to die. After all, they did give me a five percent chance of living. At that time, I didn't think about traces, stories or songs. I thought about surviving until the next day. It was only after the treatments were finished that I started asking myself the big questions.
How long are you going to live now?
What are you going to do with your life?
What was the purpose of all of this?
Is there a purpose?
Do I need to fulfill my personal purpose on this earth?
I was given a second chance at living. I thought that second chance had to be something special with an intentional purpose. I thought perhaps I got cancer because I needed change. Not just a little change, but a paradigm shift in reason, belief, and faith. I asked for it, and it happened.
The changes we ask for come from a deep understanding of the short time we have on this planet. Essentially, we know that we don't have a lot of time and we want to evolve as quickly as possible. When we are trapped in a certain way of life, we feel that life has stopped. Sometimes the hardest thing to do is make a decision to change which feels like a battle between your passion and your conditioned logic.
Be reasonable! Who needs adventure! Be an adult! Save money! Be responsible!
We are programmed from an early age that we must live prudently and cautiously.
I believe it is false.
I believe we need to live our lives the way we want, without hurting ourselves or other people.
This is the beginning. It has taken me ten years to write this page.
In the following pages, you will find my story which has taken me from my mother's death, my experience with cancer, and the choices I made which led me to live in France, to write and create music.
These words come from a need to tell. If one person who reads this story benefits from it, my purpose on this planet has been fulfilled.
Please begin my story by clicking FIRST on October 2008 and SECONDLY on PROLOGUE in the Archives section located to the right.
Enjoy the Day,
Trevor
SONG and VIDEO: DAY
The sun breaks through the dark of night
You raise your head then curse the light
Out of dreams that made you smile
Headed for the daily grind
You think about how you'll unwind
From the things that bring you down
The sun flies overhead
Then dives into the sea
Just another day for you and me
A day may seem like only one gift beneath the tree
But add the days together to make a lifetime for you
And for me
Midday comes you're running fast
Scrambling through your daily tasks
Wishing the hours away
Finally home time to relax
Pay the bills and mow the grass
Then fall into your chair
The sun flies overhead
Then dives into the sea
Just another day for you and me
A day may seem like only one gift beneath the tree
But add the days together to make a lifetime for you
And for me
The moon lights the sky again
Alarm is set for 6 a.m.
When the sun breaks through the night
You raise your head then curse the light
Out of dreams that made you smile
Headed for the daily grind
You think about how you'll unwind
From the things that bring you down
The sun flies overhead
Then dives into the sea
Just another day for you and me
A day may seem like only one gift beneath the tree
But add the days together to make a lifetime for you
And for me
Midday comes you're running fast
Scrambling through your daily tasks
Wishing the hours away
Finally home time to relax
Pay the bills and mow the grass
Then fall into your chair
The sun flies overhead
Then dives into the sea
Just another day for you and me
A day may seem like only one gift beneath the tree
But add the days together to make a lifetime for you
And for me
The moon lights the sky again
Alarm is set for 6 a.m.
When the sun breaks through the night
Chapter 26 : Seasons of Change
X’s life had become a living suspension after his rescue mission. It had been a scary time for him. He was in an immune deficient and weakened state. He had to be very cautious of where he would go or who he saw. He often wore a paper surgical mask over his mouth and nose to protect himself from any bacteria or virus. X’s immune system had been in the process of regeneration. It had been only the beginning of his body’s defense mechanism. His skin was still chalky white, his eyes still black and sunken in his collapsed face. He was freezing cold and shaking constantly. He’d lost so much weight during the transplant procedure that he was just a bag of bones.
The doctors hadn’t given him any special procedures to follow anymore. After the transplant, the patient has completed their mission. There is no more chemotherapy or radiation treatments, only profound recovery. X’s new mission was to rest and gain weight. The doctors had encouraged him to eat anything he’d wanted. The only problem was that X couldn’t eat anything. Nothing appealed to him at all. If he did eat, it had been just a few bites and he’d been finished. It was a strange mix between nausea and disgust if he’d tried to eat. Sometimes just the thought of food or smelling it would make him feel ill. X’s dad had always tried to prepare great meals and they’d often sit at the kitchen table together watching the news.
X’s weight loss became so bad that the doctors had to intervene. They prescribed what X called “liquid food in a sack”. X still had his catheter in his chest and each day his dad would insert and attach this bag of liquid food. The sack came with a handy backpack so X could carry it around with him while still hobbling on his crutches.
They’d joke around about the food sack saying, “oh, this is so good tonight!” or “I think this steak is a little overdone, don’t you?”.
In the end, X had started gaining weight again and color came back into his face. The food gave him slightly more energy and it also provoked his desire to eat more. Still, his biggest obstacle had been fatigue.
What X remembered most about this time was the fatigue. It had been an indescribable feeling of tiredness. If X walked from the kitchen to the living room, he’d be exhausted. For months after the transplant, X slept entire days away. From time to time, he’d get up and take some post transplant pills, then return to bed and sleep again. It hadn’t been just lying in bed either. It had been a profound sleep. X had literally slept weeks away.
He had not been taking a lot of pills after transplant. Once a day, he’d have to give himself a shot to boost his immune system productivity. It was one small quick shot directly into the belly. He also continued to take other prescribed supplements to aid his immune system. Another one of his pills was morphine.
It had been his pill and his addiction. He can’t remember how long it took him to get off morphine. Once a week he’d had a clinic visit. Each week the nurse would ask him how his effort to reduce the morphine was going. He’d said he was trying to reduce it, but really he’d just been popping the small powder blue pills. Because he had trouble eating and drinking, he’d take just a tiny sip of water with his pill. He’d sip just enough to get it into his system. Sometimes, he’d stopped taking the other supplements because he couldn’t get them down his throat. But he never missed his morphine after transplant, except once.
X’s dad had left for a weekend Up North. It was winter and X was not ready to make the long trip. His dad had not wanted to leave him alone, but X encouraged him to leave and that he’d be all right on his own. X had been feeling a little sick before he left, but he’d wanted his dad to get away for awhile.
X had done his normal “sleep all day” routine, but he didn’t get up to take his morphine. Later in the evening, he’d tried to take his pill with a little sip of water, but he’d vomited immediately. He’d tried again and again with the same result. He’d been exhausted with his efforts so he went back to sleep. After several hours, he awoke again feeling like hell. He was shaking and extremely cold. His body ached. He knew he was probably going through withdrawal, so he tried taking his pill again. Again, he’d had vomited. Again, all he could do is close his eyes and sleep.
His dad returned late on Sunday night to find X really sick. He took X immediately to the clinic. The nurses quickly gave him a morphine shot and prepped him for a blood transfusion. After this, X was feeling better within minutes. It had taken months to get off morphine. Each week, X had tried to reduce the intake of the pills under the supervision of his doctors. Finally, the addiction was kicked.
As the weeks passed by, X started having more and more energy. He began sleeping only half the day instead of all of it. The other moments of the day were spent in front of the TV. He’d surfed through the fifty-two channels with his feet up in the recliner, covered in blankets. Periodically, he’d dose off, then wake up and channel surf some more.
In his next stage of recovery, he was awake during the day. He could move around the house more easily without being completely exhausted. It was at this time where he’d started picking up his guitar more and more. He’d sit at the end of the recliner and pluck away at the six strings. His fingers had been so cold and fragile at this time, still he strummed the day away.
The doctors hadn’t given him any special procedures to follow anymore. After the transplant, the patient has completed their mission. There is no more chemotherapy or radiation treatments, only profound recovery. X’s new mission was to rest and gain weight. The doctors had encouraged him to eat anything he’d wanted. The only problem was that X couldn’t eat anything. Nothing appealed to him at all. If he did eat, it had been just a few bites and he’d been finished. It was a strange mix between nausea and disgust if he’d tried to eat. Sometimes just the thought of food or smelling it would make him feel ill. X’s dad had always tried to prepare great meals and they’d often sit at the kitchen table together watching the news.
X’s weight loss became so bad that the doctors had to intervene. They prescribed what X called “liquid food in a sack”. X still had his catheter in his chest and each day his dad would insert and attach this bag of liquid food. The sack came with a handy backpack so X could carry it around with him while still hobbling on his crutches.
They’d joke around about the food sack saying, “oh, this is so good tonight!” or “I think this steak is a little overdone, don’t you?”.
In the end, X had started gaining weight again and color came back into his face. The food gave him slightly more energy and it also provoked his desire to eat more. Still, his biggest obstacle had been fatigue.
What X remembered most about this time was the fatigue. It had been an indescribable feeling of tiredness. If X walked from the kitchen to the living room, he’d be exhausted. For months after the transplant, X slept entire days away. From time to time, he’d get up and take some post transplant pills, then return to bed and sleep again. It hadn’t been just lying in bed either. It had been a profound sleep. X had literally slept weeks away.
He had not been taking a lot of pills after transplant. Once a day, he’d have to give himself a shot to boost his immune system productivity. It was one small quick shot directly into the belly. He also continued to take other prescribed supplements to aid his immune system. Another one of his pills was morphine.
It had been his pill and his addiction. He can’t remember how long it took him to get off morphine. Once a week he’d had a clinic visit. Each week the nurse would ask him how his effort to reduce the morphine was going. He’d said he was trying to reduce it, but really he’d just been popping the small powder blue pills. Because he had trouble eating and drinking, he’d take just a tiny sip of water with his pill. He’d sip just enough to get it into his system. Sometimes, he’d stopped taking the other supplements because he couldn’t get them down his throat. But he never missed his morphine after transplant, except once.
X’s dad had left for a weekend Up North. It was winter and X was not ready to make the long trip. His dad had not wanted to leave him alone, but X encouraged him to leave and that he’d be all right on his own. X had been feeling a little sick before he left, but he’d wanted his dad to get away for awhile.
X had done his normal “sleep all day” routine, but he didn’t get up to take his morphine. Later in the evening, he’d tried to take his pill with a little sip of water, but he’d vomited immediately. He’d tried again and again with the same result. He’d been exhausted with his efforts so he went back to sleep. After several hours, he awoke again feeling like hell. He was shaking and extremely cold. His body ached. He knew he was probably going through withdrawal, so he tried taking his pill again. Again, he’d had vomited. Again, all he could do is close his eyes and sleep.
His dad returned late on Sunday night to find X really sick. He took X immediately to the clinic. The nurses quickly gave him a morphine shot and prepped him for a blood transfusion. After this, X was feeling better within minutes. It had taken months to get off morphine. Each week, X had tried to reduce the intake of the pills under the supervision of his doctors. Finally, the addiction was kicked.
As the weeks passed by, X started having more and more energy. He began sleeping only half the day instead of all of it. The other moments of the day were spent in front of the TV. He’d surfed through the fifty-two channels with his feet up in the recliner, covered in blankets. Periodically, he’d dose off, then wake up and channel surf some more.
In his next stage of recovery, he was awake during the day. He could move around the house more easily without being completely exhausted. It was at this time where he’d started picking up his guitar more and more. He’d sit at the end of the recliner and pluck away at the six strings. His fingers had been so cold and fragile at this time, still he strummed the day away.
SONG and VIDEO: Seasons of Change
You'll be sorry when you see me
Because I've been changing
When you see me you'll be sorry
When you look at me
You may be surprised to see
The same old me
Look into my eyes you'll see
A soul that needs to be set free
Love me, I need your love
In these seasons of change
Suddenly, tragedy
What once was me will never be
The same again
In an instant of change
With open eyes now I see
The fear inside of you and me
I see it in your face
When you see me
Look inside can't you see
Through the pain and misery
A light shines from you
Open your heart and be
A person filled with sincerity
Love, to be loved
You will never be alone
In these seasons of change
Chapter 25: Florida
X’s dad, girlfriend C and her two sons, J and B had planned a trip to Florida for Christmas and New Years. They had invited X to come with them, permitting it was ok with his doctors. X had made it a goal for himself to feel as good as possible so he could go with them. He also had to do a lot of convincing to the doctors to let him leave so far from the hospital. Realistically, X shouldn’t have been thinking about taking such a risk just after his stem cell transplant, but he did it anyway.
After the transplant procedures, X had been taking a little powder blue morphine pill to wean himself off of all the morphine he’d pumped into his system at the hospital. Each day he’d take doses of morphine to subside any withdraw effects. If he did not take his pill, he’d be sick within hours.
The travel down to Florida had been uneventful. A typical short jaunt from the Milwaukee airport. X was transported around by his family in a wheelchair to compensate for the long airport terminals. They’d stayed at an incredible timeshare condominium where they could see a large pool and jacuzzi from the deck. There was a kitchen and several bedrooms, the master bedroom had a whirlpool tub in the room.
They’d spent a lot of time at the pool. X had taken a little sun on his white skin to try and feel inner warmth again. He’d also wanted to air out after spending so much time in the hospital. It was just a few short days after arriving that X began to feel extremely fatigued and nauseated again. He couldn’t eat or drink anything. He’d woken up one morning and tried to drink a glass of orange juice. As soon as it hit the back of his throat he vomited. He tried eating everything and anything imaginable, only to have it come right out of him again. The family had gone to a theme park one day. X had insisted on going because he didn’t want to be party pooper back at home. They’d rolled him into the park and they had fun looking at different places. Despite the warm weather, X had worn a fleece pullover on top of his Hawaiian shirt and two pairs of pants because he’d had the chills so bad.
They’d decided to wait in line for one of the many rides you can take at the park. This one in particular was an adventure truck that takes you twisting and turning, throwing your body in all directions. After strapping myself into the chair of the ride, he’d known it was probably not a good idea to have gone. The ride began and X quickly felt like vomiting. Because he had nothing in his stomach, there was nothing to worry about, but he still gagged, shutting his eyes and waiting for the ride to be over. During the adventure, X closed his eyes, feeling as though he’d faint at any moment as his cold, weak body was thrashed from one movement to the next. X had made it through the ride, and he was happy to be back in the security of the wheelchair again afterwards. His battery kept diminishing more and more. By the end of the long day, which should have been fun and entertaining, X had been in the depths of profound fatigue.
Because X couldn’t eat or drink anything, he’d stopped taking his pills, all of them, including his powder blue morphine pill. He tried all the time to get them to stay down in his stomach, but no sooner than he swallowed, he’d vomit them up again. He tried everything to get it down, but nothing worked. One tiny sip of water would induce vomiting. Not taking his morphine was the worst thing X could have done in his condition. His body had immediately gone into withdraw which made everything so much worse. Internally, he’d felt like he’d been put into a deep freezer. He could not get warm. His skin was white as chalk and clammy to the touch. Huge black circles hung below his sunken eyes. His fatigue felt like one step away from unconsciousness, then death. He was in really rough shape. Then it was New Years Eve.
He’d stayed back at the condominium while the family had gone out for dinner. He was not capable of going anywhere. X sprawled out on the couch, flipping through channels showing different New Year’s events. His mind wandered. He’d thought about what was happening in his life. He’d felt so close to death. He’d wondered if he’d be around for the next New Year. He wasn’t sure anymore. Because he had the cold shakes so bad, he made himself a hot bath in the whirlpool tub. He hadn’t stayed long in the water because the heat had made him even more sick and exhausted. He vomited several times. Nothing but rank yellow bile was all that was left inside him. Then, just dry heaving. It was a pitiful action by his body to try and get rid of something that caused it harm.
He’d stayed up until the ball dropped, then had gone immediately to bed. The next morning X and his family called the hospital back home. His nurse had instructed him to get fluids immediately. He also needed a blood transfusion. X’s dad called various clinics in the Orlando area until he’d found one that was covered by his insurance. They left hurriedly to get hooked up to a fluid bag.
After the transplant procedures, X had been taking a little powder blue morphine pill to wean himself off of all the morphine he’d pumped into his system at the hospital. Each day he’d take doses of morphine to subside any withdraw effects. If he did not take his pill, he’d be sick within hours.
The travel down to Florida had been uneventful. A typical short jaunt from the Milwaukee airport. X was transported around by his family in a wheelchair to compensate for the long airport terminals. They’d stayed at an incredible timeshare condominium where they could see a large pool and jacuzzi from the deck. There was a kitchen and several bedrooms, the master bedroom had a whirlpool tub in the room.
They’d spent a lot of time at the pool. X had taken a little sun on his white skin to try and feel inner warmth again. He’d also wanted to air out after spending so much time in the hospital. It was just a few short days after arriving that X began to feel extremely fatigued and nauseated again. He couldn’t eat or drink anything. He’d woken up one morning and tried to drink a glass of orange juice. As soon as it hit the back of his throat he vomited. He tried eating everything and anything imaginable, only to have it come right out of him again. The family had gone to a theme park one day. X had insisted on going because he didn’t want to be party pooper back at home. They’d rolled him into the park and they had fun looking at different places. Despite the warm weather, X had worn a fleece pullover on top of his Hawaiian shirt and two pairs of pants because he’d had the chills so bad.
They’d decided to wait in line for one of the many rides you can take at the park. This one in particular was an adventure truck that takes you twisting and turning, throwing your body in all directions. After strapping myself into the chair of the ride, he’d known it was probably not a good idea to have gone. The ride began and X quickly felt like vomiting. Because he had nothing in his stomach, there was nothing to worry about, but he still gagged, shutting his eyes and waiting for the ride to be over. During the adventure, X closed his eyes, feeling as though he’d faint at any moment as his cold, weak body was thrashed from one movement to the next. X had made it through the ride, and he was happy to be back in the security of the wheelchair again afterwards. His battery kept diminishing more and more. By the end of the long day, which should have been fun and entertaining, X had been in the depths of profound fatigue.
Because X couldn’t eat or drink anything, he’d stopped taking his pills, all of them, including his powder blue morphine pill. He tried all the time to get them to stay down in his stomach, but no sooner than he swallowed, he’d vomit them up again. He tried everything to get it down, but nothing worked. One tiny sip of water would induce vomiting. Not taking his morphine was the worst thing X could have done in his condition. His body had immediately gone into withdraw which made everything so much worse. Internally, he’d felt like he’d been put into a deep freezer. He could not get warm. His skin was white as chalk and clammy to the touch. Huge black circles hung below his sunken eyes. His fatigue felt like one step away from unconsciousness, then death. He was in really rough shape. Then it was New Years Eve.
He’d stayed back at the condominium while the family had gone out for dinner. He was not capable of going anywhere. X sprawled out on the couch, flipping through channels showing different New Year’s events. His mind wandered. He’d thought about what was happening in his life. He’d felt so close to death. He’d wondered if he’d be around for the next New Year. He wasn’t sure anymore. Because he had the cold shakes so bad, he made himself a hot bath in the whirlpool tub. He hadn’t stayed long in the water because the heat had made him even more sick and exhausted. He vomited several times. Nothing but rank yellow bile was all that was left inside him. Then, just dry heaving. It was a pitiful action by his body to try and get rid of something that caused it harm.
He’d stayed up until the ball dropped, then had gone immediately to bed. The next morning X and his family called the hospital back home. His nurse had instructed him to get fluids immediately. He also needed a blood transfusion. X’s dad called various clinics in the Orlando area until he’d found one that was covered by his insurance. They left hurriedly to get hooked up to a fluid bag.
Chapter 24: Thanksgiving Day
It had been only a few weeks after his stem cell transplant when he’d received the green light to go home for a few hours to celebrate Thanksgiving with his family. Before leaving the hospital, he’d had the routine check out procedure of blood tests and vital checks. Although he was still enormously fatigued, he couldn’t wait to spend a ‘normal’ day out of the hospital with his brother, sister-in-law, and dad at home.
X’s dad picked him up at the hospital early in the afternoon and they went home. X had the privilege of leaving for just a few hours. He had to return to the hospital that same night. Arriving at home, X’s dad helped him into the reclining chair where he stayed the entire day. S and D arrived and they quickly began preparations for the Thanksgiving meal. X channel surfed on the television, falling in and out of slumber at any given moment. When he was awake, a gross fatigued was present.
X sat in the chair in the family room, listening to his family preparing cocktail hour in the kitchen. He heard them preparing things as they began speaking louder and louder with each new round of drinks. S came and sat next to X at one point. He’d asked X how he was doing in a friendly sort of tone. X barked back at his brother, “how the hell does it look like I’m doing?” He’d instantly felt bad about the comment and how he’d reacted. X should have understood that it was a difficult time for himself, but also an extremely difficult time for his family. His brother had expressed a genuine concern with an open heart and X twisted it into something ugly.
After a long cocktail hour, the food came out of the oven. X could smell the delicious foods drifting in the air, yet he could not eat. He couldn’t even think of eating anything. Despite this, he had been happy just to be present for this Thanksgiving meal. Just hearing his family and being close to them during the celebration was so comforting for him. X had been so comfortable at home that he didn’t want to leave. He slept profoundly in the chair next to the roaring fire, falling in and out of consciousness without effort.
Late in the evening, his dad awoke him to return to the hospital. Although it was just a few hours with his family, it was a Thanksgiving he’d never forget.
X’s dad picked him up at the hospital early in the afternoon and they went home. X had the privilege of leaving for just a few hours. He had to return to the hospital that same night. Arriving at home, X’s dad helped him into the reclining chair where he stayed the entire day. S and D arrived and they quickly began preparations for the Thanksgiving meal. X channel surfed on the television, falling in and out of slumber at any given moment. When he was awake, a gross fatigued was present.
X sat in the chair in the family room, listening to his family preparing cocktail hour in the kitchen. He heard them preparing things as they began speaking louder and louder with each new round of drinks. S came and sat next to X at one point. He’d asked X how he was doing in a friendly sort of tone. X barked back at his brother, “how the hell does it look like I’m doing?” He’d instantly felt bad about the comment and how he’d reacted. X should have understood that it was a difficult time for himself, but also an extremely difficult time for his family. His brother had expressed a genuine concern with an open heart and X twisted it into something ugly.
After a long cocktail hour, the food came out of the oven. X could smell the delicious foods drifting in the air, yet he could not eat. He couldn’t even think of eating anything. Despite this, he had been happy just to be present for this Thanksgiving meal. Just hearing his family and being close to them during the celebration was so comforting for him. X had been so comfortable at home that he didn’t want to leave. He slept profoundly in the chair next to the roaring fire, falling in and out of consciousness without effort.
Late in the evening, his dad awoke him to return to the hospital. Although it was just a few hours with his family, it was a Thanksgiving he’d never forget.
Chapter 23 : Miracles Do Happen
He awoke in his hospital the next day, more ill than ever before. The daily routine blood test had shown that his white blood cell count was now at zero. His immune system was dead. At this time the protocol dictated that he’d be given back the stem cells they had harvested and washed. X had had expectations as to what the stem cell transplant would be like. He thought perhaps they would do a surgery to ‘put in’ the cells. It wasn’t anything like that. In fact, it had been the easiest part of his protocol.
The nurse had arrived with a small pouch of fluid with a tube on it. It was about half the size of an actual blood pint bag. She said that they could start the transplant. X had been quite shocked.
“What do you mean?” he said.
She said, “This is it. These are your stem cells and now I’m going to give them back to you.”
She quickly attached the fluid to the stand and inserted the tube into the cathedar in X’s chest. X remembered this moment vividly. It was 6:30 p.m., November 12, 1998. His favorite program, Seinfield, had just started on the television. The bag emptied in under fifteen minutes. X’s autologous stem cell procedure was over. The only thing he had to do now was live and hope that his cleansed stem cells would begin working again.
Because he had no white cells left in his system, he had been in a restrictive quarantine. He could only accept his brother and his dad as visitors during the first few days. There were too many risks from the outside world that could infect him and kill him. Any small virus could have been deadly to his health. When his dad did come, he had to wash his hands very thoroughly and wear a surgical mask to cover his face. During the first few days, there hadn’t been a lot of changes. X had been extremely fatigued and slept often.
A couple of days later, he began to notice some blistering on his left leg. He thought it was very strange and immediately called the doctor. The doctor said it was probably a result of the localized radiation to the tumor site. He said that they’d watch to see if it would progress any further. It began to progress much further. In one week, he had second degree burns all over his afflicted leg. Huge blisters began forming around his surgical scars and thigh area. His entire groin area was covered in blisters and his scrotum was as thin as tissue paper. X thought that his manhood would never be functional ever again. It had been disgusting and scary. The burn team at the hospital came to see X. He had thought one doctor would come by to see him, but the doctor brought all of his young resident doctors and students to get a first hand look at him. He layed in the bed, totally nude from head to toe while a group of ten people looked at him. He had felt like a subject, yet at the same time, he laughed about it. He had been somewhat proud of what rough shape he’d been in.
The doctor prescribed a burn cream to be applied every day. Because of the intensity of the pain in the leg, the doctor put him on a morphine drip. This permitted X to self medicate simply by pressing a button. In the beginning, he had not used the button too much because he’d been afraid of the effects. By the second week of the transplantation, he’d used it very liberally.
When a person loses their immune system, strange things begin happening to the body. First of all, all the bacteria and things that live in your GI tract dies. So, everything from your mouth until your rectum falls out of you. The result is persistent diarreha. You are continuously going to the bathroom. Because X had been going to the bathroom so often, the nurses instructed him to use baby wipes for cleaning. It was just so much and so often. Secondly, you start having mouth sores. This had been another reason why X had been put on morphine. The inner lining of the mouth begins to peel away. X mouth had turned a sort of grey in color. Large portions on the top of his tongue began falling off. X had torn a portion of his tongue off that had been flapping around. At that point, the nurse began using a suction device located behind X’s bed to vacuum out his mouth. Because of the constant falling of the inner tissue of the mouth, the cleaning happened quite often. Because of the morphine, it was an absolutely normal thing to be having done.
X lay in bed all the while being very closely monitored. He hadn’t felt anything after awhile. Maybe that was the best way. He kept punching the morphine button whenever the next dose allowed him to. At this point, he hadn’t wanted to feel anything. He didn’t eat of course. Fluid bags hydrated him.
He didn’t have any idea of how he looked. He can’t imagine how his family felt, seeing him like that. It must have been extremely frightening for them.
All X could do was wait now. Live and wait. Each day the nurse would take a new sample of blood to see if there was the slightest trace of white blood cells. Each day, there had been nothing. For thirty-five days he lay in a hospital bed without an immune system. Then, one beautiful morning, the results came back positive. White blood cells were detected.
The doctors said it was a good sign. They said that the stem cells now had to find their way home into the bone marrow and then remember that they were the ones who create white cells. When the stem cells begin to make new cells, it can progress much more quickly. Each day brought higher white cell counts in his blood. The cells were mulitplying more and more. X’s immune system had been killed and brought back to life. It was a miracle.
The nurse had arrived with a small pouch of fluid with a tube on it. It was about half the size of an actual blood pint bag. She said that they could start the transplant. X had been quite shocked.
“What do you mean?” he said.
She said, “This is it. These are your stem cells and now I’m going to give them back to you.”
She quickly attached the fluid to the stand and inserted the tube into the cathedar in X’s chest. X remembered this moment vividly. It was 6:30 p.m., November 12, 1998. His favorite program, Seinfield, had just started on the television. The bag emptied in under fifteen minutes. X’s autologous stem cell procedure was over. The only thing he had to do now was live and hope that his cleansed stem cells would begin working again.
Because he had no white cells left in his system, he had been in a restrictive quarantine. He could only accept his brother and his dad as visitors during the first few days. There were too many risks from the outside world that could infect him and kill him. Any small virus could have been deadly to his health. When his dad did come, he had to wash his hands very thoroughly and wear a surgical mask to cover his face. During the first few days, there hadn’t been a lot of changes. X had been extremely fatigued and slept often.
A couple of days later, he began to notice some blistering on his left leg. He thought it was very strange and immediately called the doctor. The doctor said it was probably a result of the localized radiation to the tumor site. He said that they’d watch to see if it would progress any further. It began to progress much further. In one week, he had second degree burns all over his afflicted leg. Huge blisters began forming around his surgical scars and thigh area. His entire groin area was covered in blisters and his scrotum was as thin as tissue paper. X thought that his manhood would never be functional ever again. It had been disgusting and scary. The burn team at the hospital came to see X. He had thought one doctor would come by to see him, but the doctor brought all of his young resident doctors and students to get a first hand look at him. He layed in the bed, totally nude from head to toe while a group of ten people looked at him. He had felt like a subject, yet at the same time, he laughed about it. He had been somewhat proud of what rough shape he’d been in.
The doctor prescribed a burn cream to be applied every day. Because of the intensity of the pain in the leg, the doctor put him on a morphine drip. This permitted X to self medicate simply by pressing a button. In the beginning, he had not used the button too much because he’d been afraid of the effects. By the second week of the transplantation, he’d used it very liberally.
When a person loses their immune system, strange things begin happening to the body. First of all, all the bacteria and things that live in your GI tract dies. So, everything from your mouth until your rectum falls out of you. The result is persistent diarreha. You are continuously going to the bathroom. Because X had been going to the bathroom so often, the nurses instructed him to use baby wipes for cleaning. It was just so much and so often. Secondly, you start having mouth sores. This had been another reason why X had been put on morphine. The inner lining of the mouth begins to peel away. X mouth had turned a sort of grey in color. Large portions on the top of his tongue began falling off. X had torn a portion of his tongue off that had been flapping around. At that point, the nurse began using a suction device located behind X’s bed to vacuum out his mouth. Because of the constant falling of the inner tissue of the mouth, the cleaning happened quite often. Because of the morphine, it was an absolutely normal thing to be having done.
X lay in bed all the while being very closely monitored. He hadn’t felt anything after awhile. Maybe that was the best way. He kept punching the morphine button whenever the next dose allowed him to. At this point, he hadn’t wanted to feel anything. He didn’t eat of course. Fluid bags hydrated him.
He didn’t have any idea of how he looked. He can’t imagine how his family felt, seeing him like that. It must have been extremely frightening for them.
All X could do was wait now. Live and wait. Each day the nurse would take a new sample of blood to see if there was the slightest trace of white blood cells. Each day, there had been nothing. For thirty-five days he lay in a hospital bed without an immune system. Then, one beautiful morning, the results came back positive. White blood cells were detected.
The doctors said it was a good sign. They said that the stem cells now had to find their way home into the bone marrow and then remember that they were the ones who create white cells. When the stem cells begin to make new cells, it can progress much more quickly. Each day brought higher white cell counts in his blood. The cells were mulitplying more and more. X’s immune system had been killed and brought back to life. It was a miracle.
SONG and VIDEO: Once More
No need to worry
Why such a hurry
What are you running from
In any direction
Your soul is perfection
What are you fighting it for
The sun hasn't disappeared
When all you've seen is rain
The good life isn't gone forever
When all you feel is pain
Know that laughter lives nearby
Just beyond the door
If you find the strength to open it
The sky will be bright once more
Once more
Take time to decide
The feelings you've inside
Of what your dreams will become
Infinite Glory
An unending story
Mind, body, soul all as one
The sun hasn't disappeared
When all you've seen is rain
The good life isn't gone forever
When all you feel is pain
Know that laughter lives nearby
Just beyond the door
If you find the strength to open it
The sky will be bright once more
Once more
Why such a hurry
What are you running from
In any direction
Your soul is perfection
What are you fighting it for
The sun hasn't disappeared
When all you've seen is rain
The good life isn't gone forever
When all you feel is pain
Know that laughter lives nearby
Just beyond the door
If you find the strength to open it
The sky will be bright once more
Once more
Take time to decide
The feelings you've inside
Of what your dreams will become
Infinite Glory
An unending story
Mind, body, soul all as one
The sun hasn't disappeared
When all you've seen is rain
The good life isn't gone forever
When all you feel is pain
Know that laughter lives nearby
Just beyond the door
If you find the strength to open it
The sky will be bright once more
Once more
Chapter 22: Protocol
His life had become a series of waves. He learned that the chemotherapy would take him down, then he’d have a blood transfusion to raise him up. His life had become a series of treatments that changed with each new clinic appointment. He never knew what to expect next. He did as he was told and he believed what he’d been told.
X knew that he had a cancerous tumor growing on his leg. He didn’t expect what the doctors had told him next. They said they must do a test to see if the cancer was in his bone marrow. X immediately thought about an elaborate surgery, exploring the inside of his bones to confirm if it was infected or not. The procedure was anything but that.
It had been an outpatient surgery, performed in the clinic itself. It was a relatively simple procedure, but X was told it could be quite painful and physically intimidating. X lay on the table while his nurse practitioner felt his hip joint. She had a long needle in her hand that she told him that she was going to insert between his joint of the hip and leg. This is the easiest place to harvest a sample of bone marrow. You must be very precise with this procedure because it is easy to miss your target. There is a small margin of error. The first time X had this procedure done, he didn’t take any pain medication. It had been somewhat painful during the procedure, but the real pain came afterwards. For two or three days it had felt like a football player had thrown his shoulder into his hip. The harvest procedure lasted about ten minutes. After the procedure, the sample was sent out to see if there was cancer cells in the marrow.
The results came quickly back to X.
His bone marrow was also infected with disease.
A bone marrow transplant was added to his protocol list.
For a bone marrow transplant, they usually ask a brother or sister to be a donor. X’s brother had gone for a blood test to determine whether or not he was a suitable donor. Unfortunately, he was not a match. The next option was to wait for a matching donor. This could take a long time and X had no time to wait. The cancer had been already very extensive in his system. The next option was an extremely experimental procedure called an autologous stem cell transplant.
Prior to radiation, X had a procedure called a plasmaphoerisis. For the transplant to be effective, they needed to harvest large numbers of stem cells. X couldn’t imagine what the procedure would be like, but one day he’d gone into the clinic to begin. Would it hurt, he asked himself? What would it be like? X lay down on a table in a secluded part of the clinic. They’d asked him if he wanted to listen to music or watch a film. X drank an orange juice while waiting. He had not been allowed to drink any caffeine because it could ruin the procedure. The specialist arrived and told him that she was going to insert two large needles into both of his arms. X had been told not to make the slightest movements with his arms once the needles were in place. X hated being stuck with needles, but like always, he tried to put his mind elsewhere during those brief moments of pain. When the tip of the needle was on his arm, he’d blow out a breath of air, relieving a little tension of the insertion. She inserted the first needle into his arm and he couldn’t help but feel the sensation of length going into his vein. She affixed the needle with tape and a bandage covering it. Then she proceeded to the right arm, again placing the needle into his vein.
X lay there in the bed. One needle pumping out the blood from his right arm. The blood travelling behind him through a centrifugal force machine, spinning the blood at high speeds into it’s seven different layers. The smallest and thinnest layer of blood are stem cells which are responsible for creating white blood cells, the cells that create an immune system. The machine separates the stem cell layer from the other parts and puts it into a different area, harvesting it from the rest. The six other layers of blood are then pumped back into the other arm. The machine is basically a fine filter that catches the stem cells. The circle continued pumping out and pumping in. X layed perfectly still on the table with his thumbs tucked under his bottom to ensure he wouldn’t move his arms. He’d felt strange with the needles in his arms. He felt if he’d made the smallest movement, that he’d hurt something. A nurse sat next to X and took his blood pressure at different moments. X had been told that the procedure could last different times for different individuals. For some people, the harvest can last for one four hour day. X’s friend in the hospital was on the table for six days, five hours each day. X had stayed on the table for three days, roughly five hours each day.
Day two had been much better for X. He knew what to expect. He’d watched a couple of movies and tried to relax. Day three, the nurse had difficulty finding good veins because they’d been deflated so much. Eventually, she’d found some and the procedure moved rather quickly. It had turned into a routine procedure by then and he knew how to prepare his mind for it.
The third day finished the harvesting process. The stem cells were then taken and washed in chemotherapy to destroy any cancer cells, then immediately cryogenically frozen for the next step.
The next part of the protocol were the radiation treatments. X handled the radiation quite well and was even able to drive himself to the hospital each day for treatments. X’s dad always offered to take him, but he’d decline. His dad had helped him so much already. While the nurse would set up the equipment for the radiation sessions, X would lay on the table, preparing himself. These sessions were a time of profound concentration for X. He would think about the internal structure of his leg. First the skin, then deeper into the tissues, the muscles, then into the bone. When thinking about the inside of the bone, he’d think smaller yet to the size of cells. He’d see the group of cells moving about, millions upon millions of them. He tried to visualize the bad cancer cells as being red in color, while the good cells were white. The nurses had made a temporary tattoo on his leg to line up the machine overhead. They’d make him as comfortable as possible with many pillows and blankets. Before leaving, they’d ask if he wanted any music played during the session. X usually brought a guitar CD by Leo Kottke to listen to. The door would then close and the session would begin.
Strange mechanical sounds bellowed from the machine overhead, still X tried to concentrate on his leg. X lay motionless on the table. It had been a bizarre feeling because it didn’t feel like anything is happening. It did not hurt. But, he knew that something was taking place in order to cure him.
It was a moment of concentrated cure where science, visualization and prayer combined into a universal healing session.
As the minutes passed, X saw the bad red cells in his leg being blown apart and new pure fresh white cells taking their place. X cleansed his leg in these white cells, washing the interior of his bone with his mind.
The session usually lasted about twenty minutes. After the first session, he’d felt a little tired. The fatigue gradually progressed further and further with each session. By the last session, he’d been really dragging. He’d still driven himself to the hospital each day for three weeks. After these sessions, he’d drive home and take a long restful nap. During these times, he’d also tried to eat everything and anything he could. In the one-month time of his radiation treatments, he’d gained nearly twelve pounds. He’d wanted to be sure to go into his stem cell transplant with a lot of extra weight because he knew he wouldn’t be eating then. During this time, he’d also did light stretching and dumbbell lifting to keep maintain his muscle tone.
After the localized radiation to the leg was completed, it was time to begin the total body irradiation or TBI. Prior to the first session of TBI, he’d received his seventh and final dose of chemotherapy. This had been a double dosage of chemotherapy. The idea is to give the maximum amount of chemotherapy at the end to couple it with the TBI to kill the cancer in one movement. These two actions combined literally kill a person’s immune system. At this point, the stem cells are given back to the person in what is called a Rescue Mission. The stem cells are supposed to return to where they do their job and begin creating white blood cells, therein restarting or recreating the body’s immune system.
X had been really stepping into the unknown with the TBI. He didn’t know what to expect. Would I get sick right away? he’d asked. Would I burn? he questioned. He had a lot of uncertainties in his head and was also trying to prepare himself for the stem cell transplant. Little did he know that he had already been in the transplant program and nearly at the end of his treatments. As it had been, the TBI was the last step of his protocol to kill the cancer. The stem cells were harvested. The double dosage of chemotherapy was complete. The localized radiation was complete. All that remained was TBI.
On the first day, he’d driven to the hospital and checked in. He got undressed and put on his gown. In the waiting area, he gave the nurse the CD he wanted to hear during the session. He then proceeded into the TBI session room.
He was very confused. The room was completely white. The walls and floor reflected a clean white shine. The room was basically empty. Against one wall was an apparatus to sit on and on the side of the room was a large white machine. Nothing obstructed the two items except the shiny floor. Two nurses took X’s crutches and helped him onto the chair. Even at this point, X was not allowed to put any pressure on his left leg. They faced him towards the large machine and asked that he hold the cold metal poles on each side of the chair, exposing his chest. The other nurse asked that he remain perfectly still. X looked down at his chest and noticed a red laser cross hairs on his chest. Opposite of X stood a weapon of great power. X watched on as the two nurses left the room. Behind them, a large automatic door nearly two feet thick closed.
"What exactly are they trying to keep out of the outside world that I am dealing with in here," X asked himself.
A voice came over the intercom, telling him they were going to begin. X prayed and asked God to heal him. Over and over in his mind the words ‘heal me’ resonated. The guitar music began playing softly through the speakers. X felt OK, it hadn’t hurt, but he knew that something was happening. He could feel his energy slowly diminishing, like a battery losing its charge. The first session lasted twenty minutes on his front side. The nurses entered the room again and turned X around so his back was facing the machine.
X had made a joke about this. “Twenty minutes on the front, then flip and twenty on the back until extra crispy!”
Session one was completed in one hour. X had got dressed and hobbled out on his crutches extremely exhausted. It had been an overwhelming and all encompassing fatigue that can only be described as walking death. He’d felt like he was walking through Jell-O-air, thick and heavy. His faced had been red and plump, filled with chemotherapy and radiation. He’d gone immediately home and crashed in his bed. For the next two days he’d done the same sessions.
For the next two days, he’d driven himself to the hospital, a very unwise thing to do. By the end of the third session, he’d been completely wiped out. The point of exhaustion is indescribable. He was not in reality anymore. It was some kind of heavy dream. The doctors had kept asking him if he wanted to check into the hospital, but X denied it each time. He knew he was going to spend an indefinite time in the hospital during the transplant and was determined to stay in the real world as long as possible. He’d been wrong for doing this. He should have stayed in the hospital for the whole protocol because he’d been immune deficient and could’ve caused himself a lot of undesirable problems.
He had to check in the hospital the next day. His dad had taken him as soon as he got home from work. X was in rough shape by then. He can’t say how he looked, but he felt disoriented. He’d checked into his room at the clinic and the doctors said he could go out for one last meal. He couldn’t even think of eating food at this time, yet he and his dad had gone anyway. They’d gone to a family restaurant. Needless to say, the emotion in the air had been very high. There he sat with his dad, his head hanging down to his chest in a gross expression of fatigue. X couldn’t imagine what his father was thinking, seeing his son like that. X looked at the menu. Of course nothing appealed to him, but he’d ordered a bunch of little things off the menu in the event that he could possibly eat. Their food arrived and X had to immediately push it away from him. Just the smell of the food made him sick. In a swaying movement of his head, X looked around at the people in the restaurant. He’d not known how awful he looked until he started seeing the expressions on people’s faces when they looked at him.
They went back to the hospital room and X got into bed. His dad had stayed a little while and then got up to leave.
“We’ll see you tomorrow,” he said.
That night was the first night of his quarantine for the autologous stem cell transplant.
X knew that he had a cancerous tumor growing on his leg. He didn’t expect what the doctors had told him next. They said they must do a test to see if the cancer was in his bone marrow. X immediately thought about an elaborate surgery, exploring the inside of his bones to confirm if it was infected or not. The procedure was anything but that.
It had been an outpatient surgery, performed in the clinic itself. It was a relatively simple procedure, but X was told it could be quite painful and physically intimidating. X lay on the table while his nurse practitioner felt his hip joint. She had a long needle in her hand that she told him that she was going to insert between his joint of the hip and leg. This is the easiest place to harvest a sample of bone marrow. You must be very precise with this procedure because it is easy to miss your target. There is a small margin of error. The first time X had this procedure done, he didn’t take any pain medication. It had been somewhat painful during the procedure, but the real pain came afterwards. For two or three days it had felt like a football player had thrown his shoulder into his hip. The harvest procedure lasted about ten minutes. After the procedure, the sample was sent out to see if there was cancer cells in the marrow.
The results came quickly back to X.
His bone marrow was also infected with disease.
A bone marrow transplant was added to his protocol list.
For a bone marrow transplant, they usually ask a brother or sister to be a donor. X’s brother had gone for a blood test to determine whether or not he was a suitable donor. Unfortunately, he was not a match. The next option was to wait for a matching donor. This could take a long time and X had no time to wait. The cancer had been already very extensive in his system. The next option was an extremely experimental procedure called an autologous stem cell transplant.
Prior to radiation, X had a procedure called a plasmaphoerisis. For the transplant to be effective, they needed to harvest large numbers of stem cells. X couldn’t imagine what the procedure would be like, but one day he’d gone into the clinic to begin. Would it hurt, he asked himself? What would it be like? X lay down on a table in a secluded part of the clinic. They’d asked him if he wanted to listen to music or watch a film. X drank an orange juice while waiting. He had not been allowed to drink any caffeine because it could ruin the procedure. The specialist arrived and told him that she was going to insert two large needles into both of his arms. X had been told not to make the slightest movements with his arms once the needles were in place. X hated being stuck with needles, but like always, he tried to put his mind elsewhere during those brief moments of pain. When the tip of the needle was on his arm, he’d blow out a breath of air, relieving a little tension of the insertion. She inserted the first needle into his arm and he couldn’t help but feel the sensation of length going into his vein. She affixed the needle with tape and a bandage covering it. Then she proceeded to the right arm, again placing the needle into his vein.
X lay there in the bed. One needle pumping out the blood from his right arm. The blood travelling behind him through a centrifugal force machine, spinning the blood at high speeds into it’s seven different layers. The smallest and thinnest layer of blood are stem cells which are responsible for creating white blood cells, the cells that create an immune system. The machine separates the stem cell layer from the other parts and puts it into a different area, harvesting it from the rest. The six other layers of blood are then pumped back into the other arm. The machine is basically a fine filter that catches the stem cells. The circle continued pumping out and pumping in. X layed perfectly still on the table with his thumbs tucked under his bottom to ensure he wouldn’t move his arms. He’d felt strange with the needles in his arms. He felt if he’d made the smallest movement, that he’d hurt something. A nurse sat next to X and took his blood pressure at different moments. X had been told that the procedure could last different times for different individuals. For some people, the harvest can last for one four hour day. X’s friend in the hospital was on the table for six days, five hours each day. X had stayed on the table for three days, roughly five hours each day.
Day two had been much better for X. He knew what to expect. He’d watched a couple of movies and tried to relax. Day three, the nurse had difficulty finding good veins because they’d been deflated so much. Eventually, she’d found some and the procedure moved rather quickly. It had turned into a routine procedure by then and he knew how to prepare his mind for it.
The third day finished the harvesting process. The stem cells were then taken and washed in chemotherapy to destroy any cancer cells, then immediately cryogenically frozen for the next step.
The next part of the protocol were the radiation treatments. X handled the radiation quite well and was even able to drive himself to the hospital each day for treatments. X’s dad always offered to take him, but he’d decline. His dad had helped him so much already. While the nurse would set up the equipment for the radiation sessions, X would lay on the table, preparing himself. These sessions were a time of profound concentration for X. He would think about the internal structure of his leg. First the skin, then deeper into the tissues, the muscles, then into the bone. When thinking about the inside of the bone, he’d think smaller yet to the size of cells. He’d see the group of cells moving about, millions upon millions of them. He tried to visualize the bad cancer cells as being red in color, while the good cells were white. The nurses had made a temporary tattoo on his leg to line up the machine overhead. They’d make him as comfortable as possible with many pillows and blankets. Before leaving, they’d ask if he wanted any music played during the session. X usually brought a guitar CD by Leo Kottke to listen to. The door would then close and the session would begin.
Strange mechanical sounds bellowed from the machine overhead, still X tried to concentrate on his leg. X lay motionless on the table. It had been a bizarre feeling because it didn’t feel like anything is happening. It did not hurt. But, he knew that something was taking place in order to cure him.
It was a moment of concentrated cure where science, visualization and prayer combined into a universal healing session.
As the minutes passed, X saw the bad red cells in his leg being blown apart and new pure fresh white cells taking their place. X cleansed his leg in these white cells, washing the interior of his bone with his mind.
The session usually lasted about twenty minutes. After the first session, he’d felt a little tired. The fatigue gradually progressed further and further with each session. By the last session, he’d been really dragging. He’d still driven himself to the hospital each day for three weeks. After these sessions, he’d drive home and take a long restful nap. During these times, he’d also tried to eat everything and anything he could. In the one-month time of his radiation treatments, he’d gained nearly twelve pounds. He’d wanted to be sure to go into his stem cell transplant with a lot of extra weight because he knew he wouldn’t be eating then. During this time, he’d also did light stretching and dumbbell lifting to keep maintain his muscle tone.
After the localized radiation to the leg was completed, it was time to begin the total body irradiation or TBI. Prior to the first session of TBI, he’d received his seventh and final dose of chemotherapy. This had been a double dosage of chemotherapy. The idea is to give the maximum amount of chemotherapy at the end to couple it with the TBI to kill the cancer in one movement. These two actions combined literally kill a person’s immune system. At this point, the stem cells are given back to the person in what is called a Rescue Mission. The stem cells are supposed to return to where they do their job and begin creating white blood cells, therein restarting or recreating the body’s immune system.
X had been really stepping into the unknown with the TBI. He didn’t know what to expect. Would I get sick right away? he’d asked. Would I burn? he questioned. He had a lot of uncertainties in his head and was also trying to prepare himself for the stem cell transplant. Little did he know that he had already been in the transplant program and nearly at the end of his treatments. As it had been, the TBI was the last step of his protocol to kill the cancer. The stem cells were harvested. The double dosage of chemotherapy was complete. The localized radiation was complete. All that remained was TBI.
On the first day, he’d driven to the hospital and checked in. He got undressed and put on his gown. In the waiting area, he gave the nurse the CD he wanted to hear during the session. He then proceeded into the TBI session room.
He was very confused. The room was completely white. The walls and floor reflected a clean white shine. The room was basically empty. Against one wall was an apparatus to sit on and on the side of the room was a large white machine. Nothing obstructed the two items except the shiny floor. Two nurses took X’s crutches and helped him onto the chair. Even at this point, X was not allowed to put any pressure on his left leg. They faced him towards the large machine and asked that he hold the cold metal poles on each side of the chair, exposing his chest. The other nurse asked that he remain perfectly still. X looked down at his chest and noticed a red laser cross hairs on his chest. Opposite of X stood a weapon of great power. X watched on as the two nurses left the room. Behind them, a large automatic door nearly two feet thick closed.
"What exactly are they trying to keep out of the outside world that I am dealing with in here," X asked himself.
A voice came over the intercom, telling him they were going to begin. X prayed and asked God to heal him. Over and over in his mind the words ‘heal me’ resonated. The guitar music began playing softly through the speakers. X felt OK, it hadn’t hurt, but he knew that something was happening. He could feel his energy slowly diminishing, like a battery losing its charge. The first session lasted twenty minutes on his front side. The nurses entered the room again and turned X around so his back was facing the machine.
X had made a joke about this. “Twenty minutes on the front, then flip and twenty on the back until extra crispy!”
Session one was completed in one hour. X had got dressed and hobbled out on his crutches extremely exhausted. It had been an overwhelming and all encompassing fatigue that can only be described as walking death. He’d felt like he was walking through Jell-O-air, thick and heavy. His faced had been red and plump, filled with chemotherapy and radiation. He’d gone immediately home and crashed in his bed. For the next two days he’d done the same sessions.
For the next two days, he’d driven himself to the hospital, a very unwise thing to do. By the end of the third session, he’d been completely wiped out. The point of exhaustion is indescribable. He was not in reality anymore. It was some kind of heavy dream. The doctors had kept asking him if he wanted to check into the hospital, but X denied it each time. He knew he was going to spend an indefinite time in the hospital during the transplant and was determined to stay in the real world as long as possible. He’d been wrong for doing this. He should have stayed in the hospital for the whole protocol because he’d been immune deficient and could’ve caused himself a lot of undesirable problems.
He had to check in the hospital the next day. His dad had taken him as soon as he got home from work. X was in rough shape by then. He can’t say how he looked, but he felt disoriented. He’d checked into his room at the clinic and the doctors said he could go out for one last meal. He couldn’t even think of eating food at this time, yet he and his dad had gone anyway. They’d gone to a family restaurant. Needless to say, the emotion in the air had been very high. There he sat with his dad, his head hanging down to his chest in a gross expression of fatigue. X couldn’t imagine what his father was thinking, seeing his son like that. X looked at the menu. Of course nothing appealed to him, but he’d ordered a bunch of little things off the menu in the event that he could possibly eat. Their food arrived and X had to immediately push it away from him. Just the smell of the food made him sick. In a swaying movement of his head, X looked around at the people in the restaurant. He’d not known how awful he looked until he started seeing the expressions on people’s faces when they looked at him.
They went back to the hospital room and X got into bed. His dad had stayed a little while and then got up to leave.
“We’ll see you tomorrow,” he said.
That night was the first night of his quarantine for the autologous stem cell transplant.
Chapter 21: The Months That Follow
X’s protocol was to last only five months. It was a program designed to rid the body of disease in one intensive effort. Of course, during this time, many decisions had to be made. Many new experiences arose. Many utterly disgusting and unimaginable things happened to X’s body. It was hard for X to see himself as who he’d become at this time. He only knew that he was sick and he needed to get better. He knew that he had to follow the doctor’s instructions to the last word in order to stay ‘healthy’ or even alive.
X always had awareness in the back of his mind that the procedure would work. Waves of doubt would crash upon him at the most insignificant moment.
“Will it work? Will I live? Am I going to be all right?” he’d ask himself.
But, behind these temporary moments of doubt was a wealth of confidence that it would work, that he’d be healed. Perhaps X just didn’t want to believe that he could die. Perhaps no one believes that they can die until the last moment has faced them. Perhaps he had this belief because he told himself over and over that each new event towards his program was the next step towards killing the disease. Perhaps he had this belief because he’d asked for it.
Although X had been raised a Catholic, he hadn’t been following his religion for some time. As a child, he’d been taken to church nearly every Sunday. He’d had distant memories of he and his mother praying together at night, learning verses for his first communion. He’d come from a discreet religious family. He’d gone to catechism for twelve years. He never had really thought about religion too much until he began studying philosophy in college. This began to spark an interest in something greater than himself. Perhaps philosophy opened his mind enough to see that existence is minute whereas eternity is never ending. As a young individual, he didn’t find any use for his religion, but it still lingered somewhere within him. People say that your religion is always there for you and all you need to do is reach out. In a sense, this had been true for X. In the moment he had broken his leg, his first scream was out of intense pain and his second scream was for God’s help. In that moment, his religion came screaming back to him and in that moment he felt comfort. When it came down to a decisive moment of true existence, an instinctual testimony of his faith screamed out. This had been the moment
of truth.
In the following months, this relationship had grown. It wasn’t something that he declared. Rather, it had been an inner strength that he kept for himself. It guided him and gave him the courage to face each new challenge in his protocol. He asked for this strength on a daily basis. He asked for hope to fill him. He asked God to spare his life. He found a new relationship with his mom that had passed away. He knew he couldn’t do it alone. Some believe that this could have been X’s own inner strength that lead the way. X knew it was not his own.
X always had awareness in the back of his mind that the procedure would work. Waves of doubt would crash upon him at the most insignificant moment.
“Will it work? Will I live? Am I going to be all right?” he’d ask himself.
But, behind these temporary moments of doubt was a wealth of confidence that it would work, that he’d be healed. Perhaps X just didn’t want to believe that he could die. Perhaps no one believes that they can die until the last moment has faced them. Perhaps he had this belief because he told himself over and over that each new event towards his program was the next step towards killing the disease. Perhaps he had this belief because he’d asked for it.
Although X had been raised a Catholic, he hadn’t been following his religion for some time. As a child, he’d been taken to church nearly every Sunday. He’d had distant memories of he and his mother praying together at night, learning verses for his first communion. He’d come from a discreet religious family. He’d gone to catechism for twelve years. He never had really thought about religion too much until he began studying philosophy in college. This began to spark an interest in something greater than himself. Perhaps philosophy opened his mind enough to see that existence is minute whereas eternity is never ending. As a young individual, he didn’t find any use for his religion, but it still lingered somewhere within him. People say that your religion is always there for you and all you need to do is reach out. In a sense, this had been true for X. In the moment he had broken his leg, his first scream was out of intense pain and his second scream was for God’s help. In that moment, his religion came screaming back to him and in that moment he felt comfort. When it came down to a decisive moment of true existence, an instinctual testimony of his faith screamed out. This had been the moment
of truth.
In the following months, this relationship had grown. It wasn’t something that he declared. Rather, it had been an inner strength that he kept for himself. It guided him and gave him the courage to face each new challenge in his protocol. He asked for this strength on a daily basis. He asked for hope to fill him. He asked God to spare his life. He found a new relationship with his mom that had passed away. He knew he couldn’t do it alone. Some believe that this could have been X’s own inner strength that lead the way. X knew it was not his own.
Chapter 20: First Clinic Visit
X’s life became a new routine of home life and clinic life. After his first chemotherapy treatment, X didn’t know how he’d feel. Everyone told him how bad chemo could make a person feel, but he had felt surprising well after his treatments, until a few days afterwards. Then, the fatigue set in.
The grand fatigue came like a hammer on his head. Any movement would put him out of breath. Just going to the refrigerator from the couch would leave him gasping for breath. It was useless for him to even go near the kitchen because he’d completely lost his appetite. Something was wrong though, was he supposed to feel this tired? As the days went slowly by at home, his fatigue worsened. His skin had turned a chalky dead white and very cold to the touch. He began having cold shivers so awful that his teeth would literally chatter. He’d never felt so weak in his entire life. X’s dad called the clinic and spoke to the nurse about his condition. The nurse advised X to come in for an immediate blood transfusion. She told him the reason for all these symptoms was probably a lack of red blood cells. The chemotherapy breaks down your body so much that it cannot produce red blood cells fast enough to keep you energised.
X’s dad put him in the truck and took him directly to the clinic. It had been a summer day but X asked for the heater to be turned on. His teeth continued to chatter. They arrived at the clinic and his dad got a wheelchair to bring in X. His dad rolled X into the hospital, his head was hanging to his chest from fatigue. He was literally ice cold. They found their way to the right floor and entered the room.
Many families were there with their sick children. Babies were in strollers attached to chemotherapy fluids. Young toddlers played in the corner with bald heads. Dad checked X in at the desk while X tried everything he could to fight back his tears. He couldn’t believe what was happening. He felt so helpless and small. He was freezing from the inside out with his hands shaking uncontrollably. The nurses provided some warm blankets while they weighed him and took his blood pressure. With each new experience, X thought he’d break down into a babbling mess of tears. At one point, he did start to cry, but he then he pulled it deep inside of himself.
Why? Why was he so afraid to show his fear?
The nurse rolled him into the transfusion room to begin the transfusion process. X took his shirt off to expose the internal catheter that was implanted into his chest. He’d been told that the catheter would make all of his IV lines easier to put in each time. They’d push the needle in directly into the chest where the catheter, or port, is attached to a major vein that transports whatever is in the needle. This time was supposedly for three pints of blood. The nurse told X she wanted to feel the port a little to find the entry.
She proceeded to tell him that she was going to insert the needle.
She pierced his chest.
X felt the thick needle sink in.
It was the first time he’d had this sensation of being pierced on his open chest by a needle.
Then the nurse said, “I missed the port, I’ve got to do it again.”
X said it was OK, still feeling the burning sensation from the first attempt. The nurse tried again and missed the target again. Her hands began to tremble. X told her to just stick the damn thing in and get it over with. He was so tired and cold. On her third attempt, X fainted.
Complete blackness without sound.
When X’s eyes popped open again, he immediately heard an alarm going off and felt people rushing all around him. Between the fatigue and fainting, he’d been completely disoriented. The people were trying to pick him up out of the wheelchair and put him on a hospital table.
X screamed at the nurse who tried to lift him up by his broken leg,
“DON’T TOUCH MY LEG! IT’S BROKEN!”
They got him on the table when his doctor arrived. The doctor asked if everything was all right. He calmed everyone down and told the nurse to turn off the Code Red alarm. Another nurse finally came and inserted the needle into his port on the first attempt. Shortly after, he received his first of many blood transfusions. With each new pint he’d felt better and better. Colour came back into his face and he left the clinic feeling recharged and warm.
The grand fatigue came like a hammer on his head. Any movement would put him out of breath. Just going to the refrigerator from the couch would leave him gasping for breath. It was useless for him to even go near the kitchen because he’d completely lost his appetite. Something was wrong though, was he supposed to feel this tired? As the days went slowly by at home, his fatigue worsened. His skin had turned a chalky dead white and very cold to the touch. He began having cold shivers so awful that his teeth would literally chatter. He’d never felt so weak in his entire life. X’s dad called the clinic and spoke to the nurse about his condition. The nurse advised X to come in for an immediate blood transfusion. She told him the reason for all these symptoms was probably a lack of red blood cells. The chemotherapy breaks down your body so much that it cannot produce red blood cells fast enough to keep you energised.
X’s dad put him in the truck and took him directly to the clinic. It had been a summer day but X asked for the heater to be turned on. His teeth continued to chatter. They arrived at the clinic and his dad got a wheelchair to bring in X. His dad rolled X into the hospital, his head was hanging to his chest from fatigue. He was literally ice cold. They found their way to the right floor and entered the room.
Many families were there with their sick children. Babies were in strollers attached to chemotherapy fluids. Young toddlers played in the corner with bald heads. Dad checked X in at the desk while X tried everything he could to fight back his tears. He couldn’t believe what was happening. He felt so helpless and small. He was freezing from the inside out with his hands shaking uncontrollably. The nurses provided some warm blankets while they weighed him and took his blood pressure. With each new experience, X thought he’d break down into a babbling mess of tears. At one point, he did start to cry, but he then he pulled it deep inside of himself.
Why? Why was he so afraid to show his fear?
The nurse rolled him into the transfusion room to begin the transfusion process. X took his shirt off to expose the internal catheter that was implanted into his chest. He’d been told that the catheter would make all of his IV lines easier to put in each time. They’d push the needle in directly into the chest where the catheter, or port, is attached to a major vein that transports whatever is in the needle. This time was supposedly for three pints of blood. The nurse told X she wanted to feel the port a little to find the entry.
She proceeded to tell him that she was going to insert the needle.
She pierced his chest.
X felt the thick needle sink in.
It was the first time he’d had this sensation of being pierced on his open chest by a needle.
Then the nurse said, “I missed the port, I’ve got to do it again.”
X said it was OK, still feeling the burning sensation from the first attempt. The nurse tried again and missed the target again. Her hands began to tremble. X told her to just stick the damn thing in and get it over with. He was so tired and cold. On her third attempt, X fainted.
Complete blackness without sound.
When X’s eyes popped open again, he immediately heard an alarm going off and felt people rushing all around him. Between the fatigue and fainting, he’d been completely disoriented. The people were trying to pick him up out of the wheelchair and put him on a hospital table.
X screamed at the nurse who tried to lift him up by his broken leg,
“DON’T TOUCH MY LEG! IT’S BROKEN!”
They got him on the table when his doctor arrived. The doctor asked if everything was all right. He calmed everyone down and told the nurse to turn off the Code Red alarm. Another nurse finally came and inserted the needle into his port on the first attempt. Shortly after, he received his first of many blood transfusions. With each new pint he’d felt better and better. Colour came back into his face and he left the clinic feeling recharged and warm.
Chapter 19: First Dinner at Home
After the five-day treatment at the hospital, it was time for X to go home.
But to what home?
It had been decided that X would move back into his father’s house during his illness. Within two weeks after his diagnosis, X’s apartment on Prospect Avenue had been packed up by his family and put into his dad’s garage and basement. X was taken into his dad’s home and he sat down in the Lazyboy recliner. His dad helped him slowly into it and put up the leg rest for his bandaged and broken leg. It was such an awkward moment for him. It was the first time he’d been out of the hospital in weeks. He didn’t know where he belonged anymore and it was the first time he had a chance to actually think about what was happening to him.
X’s dad’s girlfriend, C, came down from Up North for the weekend. J.J. had come over for dinner with the family. They all had prepared a marvellous dinner while X pretended to watch the TV, his mind somewhere else. Dinner was put on the table and they all stood in front of their chairs, except X. They asked if X felt like eating something, but he couldn’t come to the table. He told them to begin eating and he’d eventually come. Then he turned his head away from them as tears involuntarily began falling from his eyes. He couldn’t stop weeping. He tried holding it back, but he couldn’t. His reality had finally begun to catch up with him. X’s family sat at the table in an awkward and uncomfortable silence. Everyone in the room felt the heaviness of that moment.
That was the first moment that X knew his life would never be the same ever again.
But to what home?
It had been decided that X would move back into his father’s house during his illness. Within two weeks after his diagnosis, X’s apartment on Prospect Avenue had been packed up by his family and put into his dad’s garage and basement. X was taken into his dad’s home and he sat down in the Lazyboy recliner. His dad helped him slowly into it and put up the leg rest for his bandaged and broken leg. It was such an awkward moment for him. It was the first time he’d been out of the hospital in weeks. He didn’t know where he belonged anymore and it was the first time he had a chance to actually think about what was happening to him.
X’s dad’s girlfriend, C, came down from Up North for the weekend. J.J. had come over for dinner with the family. They all had prepared a marvellous dinner while X pretended to watch the TV, his mind somewhere else. Dinner was put on the table and they all stood in front of their chairs, except X. They asked if X felt like eating something, but he couldn’t come to the table. He told them to begin eating and he’d eventually come. Then he turned his head away from them as tears involuntarily began falling from his eyes. He couldn’t stop weeping. He tried holding it back, but he couldn’t. His reality had finally begun to catch up with him. X’s family sat at the table in an awkward and uncomfortable silence. Everyone in the room felt the heaviness of that moment.
That was the first moment that X knew his life would never be the same ever again.
Chapter 18: Children's Hospital
X had his first meeting with Dr.C, his new oncologist. This would be the man that would help him conquer the disease in his body. The first meeting was grim. X’s father and J.J. were there when the doctor began to discuss his condition. He briefly covered what the protocol would consist of when he came to a comment that really had affected everyone in the room. X had asked what his chances were for recovery and survival.
The doctor said that he had a five percent chance of living.
He continued by saying that his proposed protocol was for a life extension of a few years.
Everyone in the room fell silent.
J.J. bowed her head. X’s dad looked out the window. X was stunned.
Momentarily X was living outside of his own reality. It must have been just a nightmare he thought.
Dr. C continued by saying something that X would never forget.
“The statistic says five percent of the people with your condition will survive. You are not a statistic. You are a person."
It was an important statement because X realised that each person is truly unique. There were so many different possibilities and factors that could’ve affected the situation. Too many conditions for the human mind to comprehend. X knew he had to believe that the protocol would work. He knew he had to believe in his health, his doctors, his family and God for the protocol to work, regardless of what the percentages said.
X received his first chemotherapy treatment that day. The nurse came into the room wearing rubber gloves and holding a bag of clear liquid. Crystal clear like the running water of the creek. Clear like the water in your body, but unlike this water, this fluid is infused to kill the unwelcome visitor. Unfortunately it also kills the body’s friends. X had been scheduled to be in the hospital for a five-day treatment program.
The day after he received his first bag of chemo, his hair had begun to fall out. It came out in large clumps. He’d awoken in the morning to find his pillow saturated with a toxic smelling sweat and clumps of fallen hair. X had run his fingers though his hair, pulling out hair without any force. Laying in bed with the itchy smelly mess was too much for him. He asked the nurse if someone could shave his head. Shortly afterward, an event coordinator for the kids came by with a big smile, an exuberance of energy and hair clippers. She asked again if he really wanted to do it. X told her to shave it. A few careful swoops over his head was all it took to take the last hair that X would ever know on his head. X felt his head. Just thin prickly fuzz remained.
Later on, X got out of bed. He had managed to find a way to drag his chemotherapy stand while walking on his crutches. He went into the bathroom and looked into the mirror for the first time since the day he’d broken his leg. He instantly cried. In one weeks time he’d gone from a strong, tall man with a full head of hair to a cancer patient. He looked into the mirror as the tears fell, noticing his shaved head, the swollen bandaged leg, his white face, the deep black circles under his eyes, an internal catheter in his chest attached to a bag of chemotherapy. Over and over he said to his reflection, “What is happening to me? What is happening to me?”
The doctor said that he had a five percent chance of living.
He continued by saying that his proposed protocol was for a life extension of a few years.
Everyone in the room fell silent.
J.J. bowed her head. X’s dad looked out the window. X was stunned.
Momentarily X was living outside of his own reality. It must have been just a nightmare he thought.
Dr. C continued by saying something that X would never forget.
“The statistic says five percent of the people with your condition will survive. You are not a statistic. You are a person."
It was an important statement because X realised that each person is truly unique. There were so many different possibilities and factors that could’ve affected the situation. Too many conditions for the human mind to comprehend. X knew he had to believe that the protocol would work. He knew he had to believe in his health, his doctors, his family and God for the protocol to work, regardless of what the percentages said.
X received his first chemotherapy treatment that day. The nurse came into the room wearing rubber gloves and holding a bag of clear liquid. Crystal clear like the running water of the creek. Clear like the water in your body, but unlike this water, this fluid is infused to kill the unwelcome visitor. Unfortunately it also kills the body’s friends. X had been scheduled to be in the hospital for a five-day treatment program.
The day after he received his first bag of chemo, his hair had begun to fall out. It came out in large clumps. He’d awoken in the morning to find his pillow saturated with a toxic smelling sweat and clumps of fallen hair. X had run his fingers though his hair, pulling out hair without any force. Laying in bed with the itchy smelly mess was too much for him. He asked the nurse if someone could shave his head. Shortly afterward, an event coordinator for the kids came by with a big smile, an exuberance of energy and hair clippers. She asked again if he really wanted to do it. X told her to shave it. A few careful swoops over his head was all it took to take the last hair that X would ever know on his head. X felt his head. Just thin prickly fuzz remained.
Later on, X got out of bed. He had managed to find a way to drag his chemotherapy stand while walking on his crutches. He went into the bathroom and looked into the mirror for the first time since the day he’d broken his leg. He instantly cried. In one weeks time he’d gone from a strong, tall man with a full head of hair to a cancer patient. He looked into the mirror as the tears fell, noticing his shaved head, the swollen bandaged leg, his white face, the deep black circles under his eyes, an internal catheter in his chest attached to a bag of chemotherapy. Over and over he said to his reflection, “What is happening to me? What is happening to me?”
Chapter 17: Diagnosis
X remembered very little of his first surgery to rod his broken femur. He woke up in the hospital bed drugged and fatigued, his left leg grossly swollen. The doctors later explained to him that they had to put in an 18” long titanium rod to treat the broken femur, the standard practice for femur fractures. Periodically, nurses came in to check on X, giving him more and more pain medication. X was in a wakeful haze when the doctor finally came into the room.
The doctor told X’s dad to sit down. He began to explain what they’d done during the procedure on the femur. He explained that they’d taken a biopsy of the femur area during the procedure. In very few words, he said the biopsy specimen came back positive. X had a large cancerous tumor growing on his left femur.
X’s dad turned instantly white.
X quickly said to the doctor, “Well, cut off my leg then. Just cut it off.”
He explained that it was much more complicated than that and that they had done everything in the femur procedure to save the leg. One doctor had wanted to just cut it off because the disease had progressed so much, but another doctor insisted on keeping the leg. For this, X would be eternally grateful. The doctor continued with his news and told X that two doctors would be coming to see him about various cancer treatment procedures. X was speechless. The doctor said he was sorry about the awful news and quietly left the room.
As soon as he’d left, X’s dad turned his back on his son and looked out the window. Then, he quickly turned around with tears in his eyes and grabbed hold of X as his tears fell.
X said, “It’ll be alright dad. It’ll be alright,” just like he’d told his mom the last time he’d spoken to her.
X tried to imagine what his dad was going through. His wife had just died three years ago and now his youngest son had just been diagnosed with cancer.
The following two days, X received two doctors in his room. X and his dad listened to what the first doctor proposed. X didn’t remember a lot of what this doctor said because he hadn’t trusted him from the very beginning of his proposal. There had been too many ‘ifs’ and ‘coulds’ in his speech.
The second doctor, an orthopaedic oncologist, was much more memorable. Dr. Hackbarth entered the room, serious but kind.
He sat down next to X and looked him directly in his eyes and said,
“I know the type of cancer you have and I know how to treat it. I’ve worked with this particular type of cancer before and have had a lot of successful patients.”
The doctor continued, “You have a rare type of childhood cancer that is usually only found in children up to the age of fifteen called Ewing’s sarcoma.”
Dr. Hackbarth explained that there had been a pathological fracture to the femur because it had weakened the bone. “I know how to treat this. You will work with an oncologist at Children’s Hospital of Wisconsin for your treatment program. He has treated many children with this disease with much success. We will begin your treatments when you can be moved to Children’s Hospital. Do you have any questions?” he added.
It had been a lot of information for X to grasp, but he’d believed in Hackbarth from the beginning. When the doctor left the room, X and his father both agreed that Hackbarth was the doctor to use.
Within a few days, X had been stable enough to be transferred to Children’s Hospital. He didn’t know what the hell was going on. One minute he’d been walking in the creek on a beautiful Sunday afternoon in June and the next minute he was being transferred to a children’s hospital for his first chemotherapy treatment with a broken femur. All of it happened in the course of fifteen days. What happened? How did it all happen?
X was brought to Children’s Hospital and was taken to the Haematology, Oncology, and Transplant or HOT floor. As they wheeled him on the flat table through the hallways, he’d seen pictures of clowns and balloons on the walls. Wheeling past the waiting room, he’d seen children’s toys scattered around. He hadn’t understood where they were taking a twenty-six year old man. Further down the hall, X began to see small children and babies connected to clear bottles of liquids. Surprised looks from nurses began to pop up here and there. X had arrived for his first of many treatments.
The doctor told X’s dad to sit down. He began to explain what they’d done during the procedure on the femur. He explained that they’d taken a biopsy of the femur area during the procedure. In very few words, he said the biopsy specimen came back positive. X had a large cancerous tumor growing on his left femur.
X’s dad turned instantly white.
X quickly said to the doctor, “Well, cut off my leg then. Just cut it off.”
He explained that it was much more complicated than that and that they had done everything in the femur procedure to save the leg. One doctor had wanted to just cut it off because the disease had progressed so much, but another doctor insisted on keeping the leg. For this, X would be eternally grateful. The doctor continued with his news and told X that two doctors would be coming to see him about various cancer treatment procedures. X was speechless. The doctor said he was sorry about the awful news and quietly left the room.
As soon as he’d left, X’s dad turned his back on his son and looked out the window. Then, he quickly turned around with tears in his eyes and grabbed hold of X as his tears fell.
X said, “It’ll be alright dad. It’ll be alright,” just like he’d told his mom the last time he’d spoken to her.
X tried to imagine what his dad was going through. His wife had just died three years ago and now his youngest son had just been diagnosed with cancer.
The following two days, X received two doctors in his room. X and his dad listened to what the first doctor proposed. X didn’t remember a lot of what this doctor said because he hadn’t trusted him from the very beginning of his proposal. There had been too many ‘ifs’ and ‘coulds’ in his speech.
The second doctor, an orthopaedic oncologist, was much more memorable. Dr. Hackbarth entered the room, serious but kind.
He sat down next to X and looked him directly in his eyes and said,
“I know the type of cancer you have and I know how to treat it. I’ve worked with this particular type of cancer before and have had a lot of successful patients.”
The doctor continued, “You have a rare type of childhood cancer that is usually only found in children up to the age of fifteen called Ewing’s sarcoma.”
Dr. Hackbarth explained that there had been a pathological fracture to the femur because it had weakened the bone. “I know how to treat this. You will work with an oncologist at Children’s Hospital of Wisconsin for your treatment program. He has treated many children with this disease with much success. We will begin your treatments when you can be moved to Children’s Hospital. Do you have any questions?” he added.
It had been a lot of information for X to grasp, but he’d believed in Hackbarth from the beginning. When the doctor left the room, X and his father both agreed that Hackbarth was the doctor to use.
Within a few days, X had been stable enough to be transferred to Children’s Hospital. He didn’t know what the hell was going on. One minute he’d been walking in the creek on a beautiful Sunday afternoon in June and the next minute he was being transferred to a children’s hospital for his first chemotherapy treatment with a broken femur. All of it happened in the course of fifteen days. What happened? How did it all happen?
X was brought to Children’s Hospital and was taken to the Haematology, Oncology, and Transplant or HOT floor. As they wheeled him on the flat table through the hallways, he’d seen pictures of clowns and balloons on the walls. Wheeling past the waiting room, he’d seen children’s toys scattered around. He hadn’t understood where they were taking a twenty-six year old man. Further down the hall, X began to see small children and babies connected to clear bottles of liquids. Surprised looks from nurses began to pop up here and there. X had arrived for his first of many treatments.
Chapter 16: Elmbrook Hospital
X had been exhausted when he arrived at Elmbrook Hospital in Waukesha. The four and one half hour ambulance ride had given him too much time to think about what was happening. It had been too much time to wonder just what the hell was going on. During the trip south to the Milwaukee area, the medic in the back of the ambulance had continued to watch over X. He asked if he’d needed anything and tried to make X as comfortable as possible. X had been given more morphine for the voyage, so he was pleasantly numb. X stared out the ambulance side window as the streetlights raced after one another. Trails of light glimmered on a desolate route into an unknown future.
Upon arriving at Elmbrook Emergency, X was taken into a room. Shortly afterwards to the surprise of X, his Aunt Marge and cousin Beth peeked their heads threw the door.
They entered the room with serious faces and Beth yelled out,
“What the hell is going on? What the hell happened?”
While explaining the situation, the doctor arrived. He uncovered the blankets to look at X’s leg. Everyone in the room had a good laugh because he was still wearing his bright orange and yellow Hawaiian swim trunks which were still wet and sandy. X was so cold. He looked down at his leg and fear tore trough him again. X didn’t want the doctor to touch his leg. With his strong and confident hands, the doctor took X’s ankle and put his other hand behind his knee. Then with uttermost gentleness, he moved the leg and put the broken femur back in place. X received more pain medication afterwards then drifted off to sleep. The surgery was scheduled for the next morning.
Upon arriving at Elmbrook Emergency, X was taken into a room. Shortly afterwards to the surprise of X, his Aunt Marge and cousin Beth peeked their heads threw the door.
They entered the room with serious faces and Beth yelled out,
“What the hell is going on? What the hell happened?”
While explaining the situation, the doctor arrived. He uncovered the blankets to look at X’s leg. Everyone in the room had a good laugh because he was still wearing his bright orange and yellow Hawaiian swim trunks which were still wet and sandy. X was so cold. He looked down at his leg and fear tore trough him again. X didn’t want the doctor to touch his leg. With his strong and confident hands, the doctor took X’s ankle and put his other hand behind his knee. Then with uttermost gentleness, he moved the leg and put the broken femur back in place. X received more pain medication afterwards then drifted off to sleep. The surgery was scheduled for the next morning.
Chapter 15: Bayview Hospital
X was taken into the emergency room and the doctor was called. He came immediately and asked what had happened. X told the doctor how he had slipped in the creek. The doctor had an unusual expression on his face somewhere between disbelief and curiosity. He asked for an x-ray right away and told the nurse to start an IV in his hand. A small dose of morphine was given to subside the excruciating pain.
After the x-ray, the doctor returned to X. His expression was now grave. He asked again how X had slipped in the creek. He shook his head back and forth, saying it was very unusual circumstances to break a femur, the strongest bone in the body. He looked at the x-ray again and said that he noticed a dark area around the fracture site. He couldn't explain what it was, but he thought it looked suspicious. The doctor said that he could repair the broken femur immediately, but he thought it would be a good idea to get an MRI before the operation. Because the hospital was not equipped with an MRI machine, X and his family decided to travel south to their hospital in Milwaukee for the MRI and the operation to repair the femur.
After the x-ray, the doctor returned to X. His expression was now grave. He asked again how X had slipped in the creek. He shook his head back and forth, saying it was very unusual circumstances to break a femur, the strongest bone in the body. He looked at the x-ray again and said that he noticed a dark area around the fracture site. He couldn't explain what it was, but he thought it looked suspicious. The doctor said that he could repair the broken femur immediately, but he thought it would be a good idea to get an MRI before the operation. Because the hospital was not equipped with an MRI machine, X and his family decided to travel south to their hospital in Milwaukee for the MRI and the operation to repair the femur.
Chapter 14: Wausaukee Ambulance
The nearest hospital was fifty-five minutes away in a town called Marinette. X had been stabilized in the back of the ambulance, but still had not been given pain medication. The ambulance bounced along the long country road, making its way to Bayview Hospital, carefully avoiding all the potholes dug out from Wisconsin winter route salting and plows. Every now and again, the ambulance would hit a pothole and X let out a small whimper of pain. X tried laughing about it with the medics, telling them to watch out for the damn potholes in the road. Because of the road conditions, the ambulance had to drive at 55 mph. An hour later, they arrived at the hospital emergency room.
Chapter 13: My Screaming Soul
It had been like any other typical weekend Up North. It was the end of June, so the weather was warm and beautiful. X and J.J. had spent the day on Saturday near the creek. The weather was warm enough to walk around in the icy waters. X had got an idea in his head that it’d be great to have a bonfire pit right next to the creek. He’d thought it’d be nice at night to sit around the fire while listening to the water bubble over the rocks. X had dug a medium sized hole with J.J. and placed bricks around it for support. Their friend M had stopped by after their work and the three of them had enjoyed the rest of the afternoon drinking beers and chatting next to the creek. X remembered how exhausted he was from such a minor job. He’d been worried now. He’d known something was not right inside him.
On Sunday morning, X had slept much later than usual. He’d been so fatigued lately. It was a fatigue that dragged his body through the day. J.J. and X had spent a leisurely morning, taking pleasure in the beautiful early summer weather. X did a few odds and ends around the cabin to get it cleaned up before leaving. Any other weekend Up North as a ritual, they would have left around 12:00 to get back home in the afternoon. Because of the exceptional weather that day, J.J. and X decided to stay and take advantage of the beautiful day.
It’d been so warm, they’d taken the lawn chairs and placed them into the creek to sunbathe and swim at the same time. J.J. loved the sun and planted herself in the perfect spot to take the sun and feel the water running around her. X had been so tired that he’d felt like he’d fall over. Instead of lounging by the creek, X decided to take a nap in the cabin. No sooner did his head touch the pillow than he’d fallen asleep. It was a profound and unnatural sleep. He’d awaken with a feeling of peace and calm. X had remembered never feeling this refreshed in many, many months. Reality seemed surreal as he slowly crawled out of bed. He’d put on his Hawaiian swim trunks and headed down to the creek. J.J. was sprawled out in her lounge chair, already looking brown from an hour of intense sun. J.J. and X had taken the sun together for awhile until the sun’s heat had told X to get into the water.
The spring fed water was extremely cold. It had been such a dramatic difference against the sun’s rays. J.J. had dared X to plunge himself into the shallow cold water. They’d laughed as X pretended to fall into the water, then stop himself. Then X said he’d do a quick push-up in the water, just to get wet and cool off. As X bent down quickly to put his hands into the water to do the push-up, his left leg slipped on the hard smooth clay bottom of the creek.
It that instant, a shrieking howl of a scream, had exploded from the innermost essence of X throughout the peaceful forest and then,
“OH MY GOD! OH MY GOD! I BROKE MY LEG! OH MY GOD! I BROKE MY LEG! HELP ME! HELP ME! HELP!”
X turned in the air and was now sitting in the shallow water looking downstream. J.J. had run to the bank of the creek and had looked down at X with a white blank expression of horror as X had continued to hurl in pain.
The pain was grotesquely immense…
X had looked down at his leg below the icy water and noticed it ballooning outwards. It felt misshapen. He knew he couldn’t move one inch. He sat frozen as the calm trickling waters gracefully passed around him, his arms bracing himself behind him, while his consciousness pounded in insane pain.
“What do I do? What do I do?” J.J. yelled.
“G…G…Go…to the neighbors…QUICK!” X screamed.
X, knowing that the nearest hospital was miles away, had thought about the neighbors pickup truck. In that moment he’d quickly thought that the neighbor could take him to the hospital. J.J. took off running barefoot through the woods to the neighbors.
Silence.
Wind through the leaves.
PAIN.
Water running.
Sky.
Cloud.
PAIN.
HELP ME!
God, help me…Help me…what is happening?
Help me…what is happening?
DON’T THINK ABOUT IT. DON”T THINK ABOUT IT!
LA LA LA LA !
GOD.
BLUE SKY.
WATER.
NO! NO! NO!
TREES.
PAIN.
Mom, what is happening to me?
Help me please. COLD. SO COLD.
GOD HELP ME!
J.J. had came running back through the trees yelling at the top of her lungs that the neighbor wasn’t home. X had screamed for her to grab the telephone and to call his aunt that lived five minutes away. J.J. called immediately, X’s aunt was on her way over.
X had been sitting in the exact same position as where he fell. He dared not move. He’d tried to put himself somewhere else. In the clouds. In the sky. He looked downstream as the water rolled over the rocks and small shrubs. At certain moments, he’d felt outside of himself. He’d tried to remain calm and use the intensity of his pain to escape himself. It would last a moment, and then the pain would rip into his inner core again.
X’s aunt K arrived along with M. They’d stood on the bank of the creek and had asked X what the hell had happened. Between using every four-letter word in the book, X had tried to explain what had happened. Aunt K had assured X that the ambulance was on its way. It was coming from the nearest town about 20 minutes away. X had tried to remain patient and calm, feeling the numbing effect of the icy creek waters on his body.
The ambulance had arrived with four or five civil volunteers. They’d assessed the situation and quickly moved to get X out of the water. Each one of the volunteers helped to lift X onto the bank of the creek where a body-board lay waiting. X had been very comfortable while they lifted him out. They’d been gentle and confident about it. They’d strapped him to the board and began carrying him up the small hill to the ambulance. X had been in an euphoric daze. He watched the green tree branches blowing in the warm breeze above him as his mind tried to put the pieces together of what was happening to him, while the echoing screech still lingered in the forest.
X's life had now completely changed like he had asked for, in one screaming instant of change.
On Sunday morning, X had slept much later than usual. He’d been so fatigued lately. It was a fatigue that dragged his body through the day. J.J. and X had spent a leisurely morning, taking pleasure in the beautiful early summer weather. X did a few odds and ends around the cabin to get it cleaned up before leaving. Any other weekend Up North as a ritual, they would have left around 12:00 to get back home in the afternoon. Because of the exceptional weather that day, J.J. and X decided to stay and take advantage of the beautiful day.
It’d been so warm, they’d taken the lawn chairs and placed them into the creek to sunbathe and swim at the same time. J.J. loved the sun and planted herself in the perfect spot to take the sun and feel the water running around her. X had been so tired that he’d felt like he’d fall over. Instead of lounging by the creek, X decided to take a nap in the cabin. No sooner did his head touch the pillow than he’d fallen asleep. It was a profound and unnatural sleep. He’d awaken with a feeling of peace and calm. X had remembered never feeling this refreshed in many, many months. Reality seemed surreal as he slowly crawled out of bed. He’d put on his Hawaiian swim trunks and headed down to the creek. J.J. was sprawled out in her lounge chair, already looking brown from an hour of intense sun. J.J. and X had taken the sun together for awhile until the sun’s heat had told X to get into the water.
The spring fed water was extremely cold. It had been such a dramatic difference against the sun’s rays. J.J. had dared X to plunge himself into the shallow cold water. They’d laughed as X pretended to fall into the water, then stop himself. Then X said he’d do a quick push-up in the water, just to get wet and cool off. As X bent down quickly to put his hands into the water to do the push-up, his left leg slipped on the hard smooth clay bottom of the creek.
It that instant, a shrieking howl of a scream, had exploded from the innermost essence of X throughout the peaceful forest and then,
“OH MY GOD! OH MY GOD! I BROKE MY LEG! OH MY GOD! I BROKE MY LEG! HELP ME! HELP ME! HELP!”
X turned in the air and was now sitting in the shallow water looking downstream. J.J. had run to the bank of the creek and had looked down at X with a white blank expression of horror as X had continued to hurl in pain.
The pain was grotesquely immense…
X had looked down at his leg below the icy water and noticed it ballooning outwards. It felt misshapen. He knew he couldn’t move one inch. He sat frozen as the calm trickling waters gracefully passed around him, his arms bracing himself behind him, while his consciousness pounded in insane pain.
“What do I do? What do I do?” J.J. yelled.
“G…G…Go…to the neighbors…QUICK!” X screamed.
X, knowing that the nearest hospital was miles away, had thought about the neighbors pickup truck. In that moment he’d quickly thought that the neighbor could take him to the hospital. J.J. took off running barefoot through the woods to the neighbors.
Silence.
Wind through the leaves.
PAIN.
Water running.
Sky.
Cloud.
PAIN.
HELP ME!
God, help me…Help me…what is happening?
Help me…what is happening?
DON’T THINK ABOUT IT. DON”T THINK ABOUT IT!
LA LA LA LA !
GOD.
BLUE SKY.
WATER.
NO! NO! NO!
TREES.
PAIN.
Mom, what is happening to me?
Help me please. COLD. SO COLD.
GOD HELP ME!
J.J. had came running back through the trees yelling at the top of her lungs that the neighbor wasn’t home. X had screamed for her to grab the telephone and to call his aunt that lived five minutes away. J.J. called immediately, X’s aunt was on her way over.
X had been sitting in the exact same position as where he fell. He dared not move. He’d tried to put himself somewhere else. In the clouds. In the sky. He looked downstream as the water rolled over the rocks and small shrubs. At certain moments, he’d felt outside of himself. He’d tried to remain calm and use the intensity of his pain to escape himself. It would last a moment, and then the pain would rip into his inner core again.
X’s aunt K arrived along with M. They’d stood on the bank of the creek and had asked X what the hell had happened. Between using every four-letter word in the book, X had tried to explain what had happened. Aunt K had assured X that the ambulance was on its way. It was coming from the nearest town about 20 minutes away. X had tried to remain patient and calm, feeling the numbing effect of the icy creek waters on his body.
The ambulance had arrived with four or five civil volunteers. They’d assessed the situation and quickly moved to get X out of the water. Each one of the volunteers helped to lift X onto the bank of the creek where a body-board lay waiting. X had been very comfortable while they lifted him out. They’d been gentle and confident about it. They’d strapped him to the board and began carrying him up the small hill to the ambulance. X had been in an euphoric daze. He watched the green tree branches blowing in the warm breeze above him as his mind tried to put the pieces together of what was happening to him, while the echoing screech still lingered in the forest.
X's life had now completely changed like he had asked for, in one screaming instant of change.
SONG and VIDEO: My Screaming Soul
A lazy day, the summers haze
And the scream
The swaying trees, a gentle breeze
And the scream
The flowing stream, melodies
Then the scream
The day that my, soul arrived
With a scream
Mother won’t you tell me please
Tell me, what is happening to me
For among the pine and oak
The forest heard the sound of
My Screaming Soul
Instant change, blinding pain, frigid stream
The calming sky, a blue goodbye
Clouds of white, and the scream
The sudden light, my soul arrived
With the scream
The day that my, soul arrived
With a scream
Mother please, what is happening to me?
Do not fear, for I am here, with you
The sombre trees, shone sympathy, on me
Oh my God, what is happening to me?
The swaying trees
My soul and me
The gentle breeze
My soul and me
The flowing stream
My soul and me
What is happening to me?
What is happening to me?
And the scream
The swaying trees, a gentle breeze
And the scream
The flowing stream, melodies
Then the scream
The day that my, soul arrived
With a scream
Mother won’t you tell me please
Tell me, what is happening to me
For among the pine and oak
The forest heard the sound of
My Screaming Soul
Instant change, blinding pain, frigid stream
The calming sky, a blue goodbye
Clouds of white, and the scream
The sudden light, my soul arrived
With the scream
The day that my, soul arrived
With a scream
Mother please, what is happening to me?
Do not fear, for I am here, with you
The sombre trees, shone sympathy, on me
Oh my God, what is happening to me?
The swaying trees
My soul and me
The gentle breeze
My soul and me
The flowing stream
My soul and me
What is happening to me?
What is happening to me?
Chapter 12: Leaving Prospect Avenue
It’d been ritual as usual on Friday afternoon. X had been itching to get out of work around 3:00. Like always, his thoughts were already Up North at the cabin. His body was at his job, but his mind was elsewhere. After work, X and J.J. had got the car packed for the weekend. X had taken a sweeping glance around his cleaned apartment one last time, locked the door and rushed out to the car.
How was X to know that when he’d left his apartment on this day, it’d be the last time that he’d ever see it? By 5:45 p.m., they’d started on the road for Up North.
How was X to know that when he’d left his apartment on this day, it’d be the last time that he’d ever see it? By 5:45 p.m., they’d started on the road for Up North.
Chapter 11: Ignoring the Alarms
X had become so fragile inside. His mind had been on the verge of explosion from all the confusion and stress in his life. Everything seemed to be piling up. He couldn’t escape the sense of a black veil over his thoughts. He’d failed to see the good in anything. One day he’d gone mountain biking with his riding partner from work. They’d been going for quite some time, but X in recent weeks had been having trouble keeping the pace. On this particular day, X had been exhausted.
Lately, he’d been feeling fits of fatigue. Deep fights with exhaustion that had struck him at work and when he’d gone home at night. He’d fought to keep up with his partner, but he couldn’t. Overwhelmed by fatigue, X had taken a bad fall down a steep incline, tumbling through some small trees to the bottom of the hill. Luckily, X had got up from the fall with mere bumps, cuts and bruises. They’d changed X’s flat tire and rode on. The accident was quickly forgotten until a few weeks later.
X’s exhaustion had grown worse. The 3:00 afternoon blues at work had been a battle to keep his eyes open. He’d felt a pain in his lower back that made it difficult to sit at his desk. At night had been his greatest discomfort. He’d awake in the middle of the night, his pillow soaked with cold sweat, with a profound aching in his left quadriceps. In the beginning, he’d thought it was a muscle cramp so he’d got up and took an aspirin. The night pains in his leg continued each night. X ignored them. It became so painful at times that X pounded with his fist on his leg, trying to alleviate what he thought was a muscular pain. It had been a pain much more profound than that however. X can’t remember how long the pains persisted.
Eventually, the pain continued on through the daytime. It became unbearable to live with. At this point, X had noticed that the muscle in his quadriceps was hard, and tight with a large bump. This pain coupled with the negative emotions in his mind felt like a terror within. X had finally gone to see a doctor. They’d taken some x-rays and had decided that the pain was probably due to the mountain biking accident weeks before.
It seemed completely probable to X and he thought nothing of it, continuing to take the prescribed pain medication until it passed. It didn’t pass. The pain had grown worse at night and his sheets would be wet with sweat each morning. The bump on his leg had grown tremendously. X had called the doctor on a Thursday afternoon to schedule another appointment. The doctor recommended that X have a MRI on the following Monday. X had been a little worried at this point, but he had absolutely no idea what would be in store for him for the weekend.
Lately, he’d been feeling fits of fatigue. Deep fights with exhaustion that had struck him at work and when he’d gone home at night. He’d fought to keep up with his partner, but he couldn’t. Overwhelmed by fatigue, X had taken a bad fall down a steep incline, tumbling through some small trees to the bottom of the hill. Luckily, X had got up from the fall with mere bumps, cuts and bruises. They’d changed X’s flat tire and rode on. The accident was quickly forgotten until a few weeks later.
X’s exhaustion had grown worse. The 3:00 afternoon blues at work had been a battle to keep his eyes open. He’d felt a pain in his lower back that made it difficult to sit at his desk. At night had been his greatest discomfort. He’d awake in the middle of the night, his pillow soaked with cold sweat, with a profound aching in his left quadriceps. In the beginning, he’d thought it was a muscle cramp so he’d got up and took an aspirin. The night pains in his leg continued each night. X ignored them. It became so painful at times that X pounded with his fist on his leg, trying to alleviate what he thought was a muscular pain. It had been a pain much more profound than that however. X can’t remember how long the pains persisted.
Eventually, the pain continued on through the daytime. It became unbearable to live with. At this point, X had noticed that the muscle in his quadriceps was hard, and tight with a large bump. This pain coupled with the negative emotions in his mind felt like a terror within. X had finally gone to see a doctor. They’d taken some x-rays and had decided that the pain was probably due to the mountain biking accident weeks before.
It seemed completely probable to X and he thought nothing of it, continuing to take the prescribed pain medication until it passed. It didn’t pass. The pain had grown worse at night and his sheets would be wet with sweat each morning. The bump on his leg had grown tremendously. X had called the doctor on a Thursday afternoon to schedule another appointment. The doctor recommended that X have a MRI on the following Monday. X had been a little worried at this point, but he had absolutely no idea what would be in store for him for the weekend.
Chapter 10: Pounding the Nail of Change
X’s impatience and anger had been surfacing more and more with each new day. Inside he’d begun to feel an inescapable sense of anxiety and stress. It showed itself in the form of aggression. He’d begun to be aggressive with his co-workers and J.J. The negative hostility he’d created with some of his co-workers made his job unbearable. He’d dreaded going to the office.
On his commute to work, his only thoughts had been how he’d spend that evening, drinking to forget about the upcoming day ahead of him. Things had been on the decline between J.J. and X. He’d wanted her. Then, he didn’t. He’d liked her. Then he didn’t. Like a switch on the wall, his affection for her switched on and off. It’d seemed that X was falling into a profound confusion in his mind. He hadn’t known why. He’d just continued his daily routine. But he’d continued to fall more and more into the storm of his negative thoughts.
X remembered passing in front of the long mirror in the hallway of his apartment building each morning. He’d glanced and said to himself each morning, “You need a change.”
He’d become obsessed with this phrase. He’d said it over and over in his thoughts thousands of times. The phrase became a nail that he’d pounded into his brain with all his strength.
You need a change.
You need a change.
Over and over the echoes of these four words resonated in his head.
On his commute to work, his only thoughts had been how he’d spend that evening, drinking to forget about the upcoming day ahead of him. Things had been on the decline between J.J. and X. He’d wanted her. Then, he didn’t. He’d liked her. Then he didn’t. Like a switch on the wall, his affection for her switched on and off. It’d seemed that X was falling into a profound confusion in his mind. He hadn’t known why. He’d just continued his daily routine. But he’d continued to fall more and more into the storm of his negative thoughts.
X remembered passing in front of the long mirror in the hallway of his apartment building each morning. He’d glanced and said to himself each morning, “You need a change.”
He’d become obsessed with this phrase. He’d said it over and over in his thoughts thousands of times. The phrase became a nail that he’d pounded into his brain with all his strength.
You need a change.
You need a change.
Over and over the echoes of these four words resonated in his head.
Chapter 9: A Friend of a Friend
X’s job had been going very well. He’d enjoyed all the perks of his new job including travel. Traveling around the United States had always been something X had wanted to do. He was now doing it, on the company’s credit card. It had been a period of rest for him, without worries. His new job had given him a sense of purpose and it kept his mind off the loss of his mother. Or so he’d thought it did. In the office, he’d met some new friends. He’d gone out with one friend in particular who had a friend named J.J. X had been attracted to J.J. from the start. They had the same interests and had ‘clicked’ right away. They’d hung out with each other for awhile as friends, then J.J. had decided she’d let her and X be more than just friends. Shortly afterwards, they’d become companions.
It’d seemed that everything had come together for X. In one year’s time, his life had drastically changed. He’d got a new job, new apartment, a new girlfriend and new experiences. It’d seemed that he was on top of the world.
Then why, he’d asked himself, was he so miserable inside?
Why does he continue to abuse himself with alcohol?
Why does he get so angry at the most miniscule thing wrong?
Why does he feel like a ticking bomb, waiting to explode?
Why is he so impatient?
Why is he so angry?
It’d seemed that everything had come together for X. In one year’s time, his life had drastically changed. He’d got a new job, new apartment, a new girlfriend and new experiences. It’d seemed that he was on top of the world.
Then why, he’d asked himself, was he so miserable inside?
Why does he continue to abuse himself with alcohol?
Why does he get so angry at the most miniscule thing wrong?
Why does he feel like a ticking bomb, waiting to explode?
Why is he so impatient?
Why is he so angry?
Chapter 9: Holding the Future
His next stage in life had helped him in many ways.
His new position had brought him a sense of confidence and pride. He now lived with a certainty of what his role was in life. He had a decent job and plenty of cash in his pockets. With his first paycheck from work, he’d purchased his first guitar.
He’d gone into a local guitar shop after work specifically to buy a guitar. There hadn’t been a doubt in his head that he wouldn’t walk out of the store with a guitar. After looking for just a short while in the shop, he’d met his future. He picked it up and looked at it. It’d seemed familiar to him. The orange and red colors of the Fender Sunburst appealed to him right away. The guitar had felt comfortable in his hands, yet very awkward. At this point, he still hadn’t known how to actually play the guitar. He’d known somehow that he would someday play. He put the guitar back on its’ stand and continued to pass along the wall of guitars. After a short time, he’d found himself holding the Fender Sunburst once again. Without an ounce of hesitation, he’d purchased the guitar. He’d gone to his dad’s to show him his new purchase.
X knelt on the floor and had opened the guitar case revealing it as his dad had watched on with eager eyes.
“Nice guitar”, he said to X.
“Now you’ve got to learn how to play it!”
“I’ll learn,” said X. “I’ll learn.”
His new position had brought him a sense of confidence and pride. He now lived with a certainty of what his role was in life. He had a decent job and plenty of cash in his pockets. With his first paycheck from work, he’d purchased his first guitar.
He’d gone into a local guitar shop after work specifically to buy a guitar. There hadn’t been a doubt in his head that he wouldn’t walk out of the store with a guitar. After looking for just a short while in the shop, he’d met his future. He picked it up and looked at it. It’d seemed familiar to him. The orange and red colors of the Fender Sunburst appealed to him right away. The guitar had felt comfortable in his hands, yet very awkward. At this point, he still hadn’t known how to actually play the guitar. He’d known somehow that he would someday play. He put the guitar back on its’ stand and continued to pass along the wall of guitars. After a short time, he’d found himself holding the Fender Sunburst once again. Without an ounce of hesitation, he’d purchased the guitar. He’d gone to his dad’s to show him his new purchase.
X knelt on the floor and had opened the guitar case revealing it as his dad had watched on with eager eyes.
“Nice guitar”, he said to X.
“Now you’ve got to learn how to play it!”
“I’ll learn,” said X. “I’ll learn.”
Chapter 8: Falling Memories
Before his first day on the job, he’d been told he’d have to cut off his long hair. Before his mom’s death, he’d begun growing it. It had been another way for him to cut off the intimacy with his mom during her illness.
When he got his new job, it’d been over three years since he’d got a cut. He remembered going to the hair stylist. He’d felt awkward and out of place. He’d never been to a place like this before.
“What kind of cut would you like?” she asked.
“Just cut it all off”, he said.
He sat in the cold white chair and the young blonde woman began snipping at his long locks as music blasted through the speakers. As his hair had fallen to the floor, he did everything he could to keep from thinking about memories of haircuts with his mom.
He had watched on in the mirror, as he was being transformed into his next stage, desperately holding back his tears.
When he got his new job, it’d been over three years since he’d got a cut. He remembered going to the hair stylist. He’d felt awkward and out of place. He’d never been to a place like this before.
“What kind of cut would you like?” she asked.
“Just cut it all off”, he said.
He sat in the cold white chair and the young blonde woman began snipping at his long locks as music blasted through the speakers. As his hair had fallen to the floor, he did everything he could to keep from thinking about memories of haircuts with his mom.
He had watched on in the mirror, as he was being transformed into his next stage, desperately holding back his tears.
Chapter 7: The Gathering of Sorrow
R’s parents had both died actually. A few years before the death of R’s mom, her dad had found out that he had a brain tumor. Their family had found this out quite suddenly at a family dinner when their father lost consciousness at the dinner table. Tests showed that he had a large tumor growing in his brain. Attempts were made to extract the tumor. Chemotherapy was given. In the end, R’s father had fought a huge battle, but there was nothing else to do for him. R’s father had left behind five children and a wife. Of course the R family was torn with grief after the loss of their father. F, the mother, had taken the loss of her husband so profoundly that eventually it had taken her own life. After a couple years of her husbands’ death, F committed suicide by letting her car run in the closed garage. Her loss years early had built into a profound confusion in her mind. She chose to escape that confusion.
R’s mother died a few weeks before X’s. They both a common link between each other besides their friendship. The link had been sorrow. R, being the oldest of the family still living near the children, was made responsible for their upbringing. She quit her life that she’d began miles away to help raise her teenage siblings in this extremely difficult time. In a way, she’d had to put her life on hold. She’d seemed somewhat suspended between who she was and what she’d become after the loss of her mom. At any rate, she had not complained, but she fulfilled her duty to her family.
As X’s father lived close to R’s new home, shortly after they began to renew their friendship. X and R began spending more and more time together. They hadn’t really talked about their losses; rather they tried to forget about them together. X began spending more time at R’s home to escape the life without his mother at his dad’s home. X hadn’t known how to be alone with his own father because he’d never been put in that position before. His mom had always been present. X’ s interaction with his parents had always been mother and father, not just the father. Moreover, X couldn’t stand the emptiness that he felt at his dad’s house. Without his mom there, the house was a cold empty shell. And so, the gathering of sorrow began at R’s home.
In R’s basement had been a finished room with music, books and comfortable chairs. R had redone the basement because she’d known her mom had always wanted to do it. This is where the gathering had taken place usually. R and her sister B, her brother A and her friend X would sit in this room and be together. They hadn’t mentioned death or loss, sorrow or grief, but it had been hidden beneath the circle of conversations. Rather than express these feelings, they’d chosen to find the best way to escape them. Their most used and efficient means of escape had been marijuana. It had been always present in the circle, passed about and eagerly smoked by all to unplug from an inner reality of torment. It had served its’ purpose to disengage from the present moment to find a moment of respite. They’d laughed. They’d laughed and carried on in a nervous and insane stupor, all the while they’d just wanted to cry and breakdown. But they could never do that. Why? Because they were kids. And kids shouldn’t have to go through shit like death and mourning. The confusion of death had been above their comprehension and the only way they’d known how to deal with it was through escape.
Through the suspension of grieving, life had been moving on in a way. X had been in a desperate need to find a job to earn some money. One day he’d seen an ad in the newspaper for a cook, like he’d been earlier in the northern forest. He’d decided to go and apply for the job. The job had been located in a deli of a large supermarket. X had been discouraged to find himself working in a deli. He’d had several years of higher education. He’d entered the supermarket for his interview, with each step wanting to turn around and leave. He’d gone to the deli to speak with the manager for the position. The manager was on break and would be back in 15 minutes. X had decided that this had been a sign and that he could leave without applying for the position. He’d walked out of the store and decided to smoke a cigarette to think of what he’d wanted to do.
Should he apply for the position? Shouldn’t he?
While taking a drag from the cigarette, he asked his mom in his thoughts for guidance. It had been the first time he’d spoken to her after her death. Instantly, in his head he’d heard his mom’s words. “You need a job, so get inside and TAKE THIS JOB!” she’d said.
X had been instantly overwhelmed with a sense of purpose. He’d known exactly what to do now. He quickly put out the cigarette and went inside. Fifteen minutes later after the interview, X walked out of the store with his new position as a cook in the deli.
Little did X know how much this decision would change his entire life.
Shortly afterwards, X began his new position. Cooking was something that he’d enjoyed and he did his job with the expectation that it was only temporary. From time to time, X saw business people coming in to look at the deli. He’d found out that the deli was part of a new franchise program from a local company that manufactured food service and restaurant equipment. Periodically, the business people would drop by to see how their new concept was working out. They even had a person from their company working in the deli.
X had always been professional and outgoing with these people. He’d been somewhat curious about them and what they did. Then, after working in the deli for several months, the business people had offered X a position in their company. Just like that. Out of the blue. They’d offered him a much better salary and the chance to travel around the country. Of course, X immediately took the position and not seven months after applying for the job in the deli (the job he’d been about to walk away from), he found himself in a suit and tie, working for a company.
Little did X know how much this position at this company would change his entire life.
With all of the confusion of the time, X and R had found comfort in each other’s arms. It provided them with a comfort and security that they’d both needed at the time. It had been an exchange of support. The months that X had spent at the gathering with R had given him support to go on with his life. He couldn’t have had done it without her. In the end however, X had needed too much and had asked too much from R. On a cold, dark and snowy night, X had left R’s house for the last time, never to see her again until years later. The confusion had become too much to comprehend. The gathering of sorrow had ended for X. He had moved on to another step in his grieving process. X had found a new job and had used it to continue to forget.
R’s mother died a few weeks before X’s. They both a common link between each other besides their friendship. The link had been sorrow. R, being the oldest of the family still living near the children, was made responsible for their upbringing. She quit her life that she’d began miles away to help raise her teenage siblings in this extremely difficult time. In a way, she’d had to put her life on hold. She’d seemed somewhat suspended between who she was and what she’d become after the loss of her mom. At any rate, she had not complained, but she fulfilled her duty to her family.
As X’s father lived close to R’s new home, shortly after they began to renew their friendship. X and R began spending more and more time together. They hadn’t really talked about their losses; rather they tried to forget about them together. X began spending more time at R’s home to escape the life without his mother at his dad’s home. X hadn’t known how to be alone with his own father because he’d never been put in that position before. His mom had always been present. X’ s interaction with his parents had always been mother and father, not just the father. Moreover, X couldn’t stand the emptiness that he felt at his dad’s house. Without his mom there, the house was a cold empty shell. And so, the gathering of sorrow began at R’s home.
In R’s basement had been a finished room with music, books and comfortable chairs. R had redone the basement because she’d known her mom had always wanted to do it. This is where the gathering had taken place usually. R and her sister B, her brother A and her friend X would sit in this room and be together. They hadn’t mentioned death or loss, sorrow or grief, but it had been hidden beneath the circle of conversations. Rather than express these feelings, they’d chosen to find the best way to escape them. Their most used and efficient means of escape had been marijuana. It had been always present in the circle, passed about and eagerly smoked by all to unplug from an inner reality of torment. It had served its’ purpose to disengage from the present moment to find a moment of respite. They’d laughed. They’d laughed and carried on in a nervous and insane stupor, all the while they’d just wanted to cry and breakdown. But they could never do that. Why? Because they were kids. And kids shouldn’t have to go through shit like death and mourning. The confusion of death had been above their comprehension and the only way they’d known how to deal with it was through escape.
Through the suspension of grieving, life had been moving on in a way. X had been in a desperate need to find a job to earn some money. One day he’d seen an ad in the newspaper for a cook, like he’d been earlier in the northern forest. He’d decided to go and apply for the job. The job had been located in a deli of a large supermarket. X had been discouraged to find himself working in a deli. He’d had several years of higher education. He’d entered the supermarket for his interview, with each step wanting to turn around and leave. He’d gone to the deli to speak with the manager for the position. The manager was on break and would be back in 15 minutes. X had decided that this had been a sign and that he could leave without applying for the position. He’d walked out of the store and decided to smoke a cigarette to think of what he’d wanted to do.
Should he apply for the position? Shouldn’t he?
While taking a drag from the cigarette, he asked his mom in his thoughts for guidance. It had been the first time he’d spoken to her after her death. Instantly, in his head he’d heard his mom’s words. “You need a job, so get inside and TAKE THIS JOB!” she’d said.
X had been instantly overwhelmed with a sense of purpose. He’d known exactly what to do now. He quickly put out the cigarette and went inside. Fifteen minutes later after the interview, X walked out of the store with his new position as a cook in the deli.
Little did X know how much this decision would change his entire life.
Shortly afterwards, X began his new position. Cooking was something that he’d enjoyed and he did his job with the expectation that it was only temporary. From time to time, X saw business people coming in to look at the deli. He’d found out that the deli was part of a new franchise program from a local company that manufactured food service and restaurant equipment. Periodically, the business people would drop by to see how their new concept was working out. They even had a person from their company working in the deli.
X had always been professional and outgoing with these people. He’d been somewhat curious about them and what they did. Then, after working in the deli for several months, the business people had offered X a position in their company. Just like that. Out of the blue. They’d offered him a much better salary and the chance to travel around the country. Of course, X immediately took the position and not seven months after applying for the job in the deli (the job he’d been about to walk away from), he found himself in a suit and tie, working for a company.
Little did X know how much this position at this company would change his entire life.
With all of the confusion of the time, X and R had found comfort in each other’s arms. It provided them with a comfort and security that they’d both needed at the time. It had been an exchange of support. The months that X had spent at the gathering with R had given him support to go on with his life. He couldn’t have had done it without her. In the end however, X had needed too much and had asked too much from R. On a cold, dark and snowy night, X had left R’s house for the last time, never to see her again until years later. The confusion had become too much to comprehend. The gathering of sorrow had ended for X. He had moved on to another step in his grieving process. X had found a new job and had used it to continue to forget.
Chapter 6: Refuge Up North
Nearly fifteen years had passed, and the Middle Inlet still flowed with determination. X had thought about how his life had changed since he’d been a small boy. He remembered when he moved from the university that he’d attended, to live Up North, deep in the woods of Wisconsin, to escape himself. He’d been a college drop out. He knew he had to leave the university because his alcoholism had gotten out of control. He needed to runaway again. Just like he did when he’d found out that his mom had cancer.
Up North seemed like the refuge that he needed to get back on track again. Plus, he’d known that he’d be closer to his ill mom again. He’d known that his mom and dad still did the Friday ritual if she’d been feeling up to it. He needed to be closer to her. Despite his first flight instinct to run away to a university far from his mom after learning about her illness, he’d known now that there was no time left. He’d known she’d disappear soon. After living in the forest for about a year, the telephone had rung early on a Sunday morning in August.
He’d answered the phone and heard his dad on the other end. “You better come down to Milwaukee,” he said. X jumped into the car minutes after the speaking with his dad. During the three and a half-hour drive to Milwaukee, tears had rolled down his cheeks. He knew that this was it. He just hoped that he could see her before she left. He’d arrived at the hospital and saw his whole family there. He’d gone into her room and saw her in bed with her eyes closed. She woke a little and looked at him. He didn’t know what to say. He took her cold hand and told her everything would be all right. He’d known it was not all right and she’d known it was not all right. He told her he loved her very much. She’d wanted to see the entire family one by one when she would wake up. Each one of them went into her room to speak with her. Each one of them left her room in tears.
It had been night. X’s family and friends of the family were all there outside her room. She’d been unconscious for several days and everyone was saying it was a matter of time. X’s old friend R had arrived to say goodbye to his mom. They’d gone outside to smoke a cigarette. They’d been talking about how shitty life was. R’s mother had died one week earlier. Suddenly, X’s uncle came running out of the hospital, telling him to come quickly. X ran up the stairs to the fourth floor and into his mom’s room where he’d found everyone around her bed. They all looked down at her crying. Her heartbeat had slowed down and her breathing had nearly stopped. It lasted a little while. X’s dad held his wife’s head in his hands. X and his brother held their mom’s hand. His dad kept telling her, “just let go…just let go.” Finally, after her five-year battle with breast cancer, she had let go of life.
Afterwards, each person had had a little time to be with her alone. X stood next to the bed, looking down at her. He touched her hand. He gave her a kiss on the forehead. He didn’t know what to do. He didn’t want to leave her, but he knew he had to go. He looked at her one last time. He knew it would be the last time he saw her in reality. He turned and walked out of the room, forcing himself not to look back at her.
There was a funeral a few days later. Family and friends had gathered at the house. All X could remember was a low mumble of voices resonating off the walls of the kitchen. They left for the church. X stood by his dad and brother in the front row. On the other side of the pew were his mom’s parents, ages 80 and 90 years old. X couldn’t look at his grandpa because of the pain he saw in the old man’s eyes. He had outlived his only daughter, who he adored with all his heart. X grasped the pew in front of him to keep his balance. He didn’t hear anything. He fought to keep from breaking down in a fit of tears. His jaw was clenched. After the priest had mumbled his last word, X had been the first to walk out of the church with his brother and father. He looked straight ahead, fighting to keep his emotions inside him. He never stopped fighting the pain, hurt and loss that he felt that day. He pushed it deeper and deeper into his unconscious. They all did.
His mom had just died. There had been a lot of emotion everywhere. A couple days after the funeral, X was completely lost. He had no idea where he should go or what he should do. He’d been living Up North at his parents’ cabin, working as a cook in a small restaurant. He didn’t know if he should go back to that. Should he go back to the solitude of the forest?
His dad came home from work and X had his car packed to leave to go back to his refuge in the North. He stood next to his car, close to tears when his dad asked him if he was going somewhere. X told his dad he didn’t know where he was going or what he was doing. X just said he was going Up North. X saw the emotion in his dad’s eyes. His dad knew that X was lost, because he was lost himself. X had to leave right away. There stood two men overwhelmed with emotion and unable to show it to each other. He had to run. He just left it like that, tears flowing as he drove away.
That weekend, X spent the weekend drinking in solitude. By Sunday, he’d decided it was time to go back to his dad’s house. X began a new life and a new relationship with his dad. It was a relationship without a mother or a wife.
A few weeks after X’s mom died, he called his old friend R to see how she was doing. They got together and began to renew their friendship that they had before going off to college. They both had something in common. They’d both just lost their mother’s.
Up North seemed like the refuge that he needed to get back on track again. Plus, he’d known that he’d be closer to his ill mom again. He’d known that his mom and dad still did the Friday ritual if she’d been feeling up to it. He needed to be closer to her. Despite his first flight instinct to run away to a university far from his mom after learning about her illness, he’d known now that there was no time left. He’d known she’d disappear soon. After living in the forest for about a year, the telephone had rung early on a Sunday morning in August.
He’d answered the phone and heard his dad on the other end. “You better come down to Milwaukee,” he said. X jumped into the car minutes after the speaking with his dad. During the three and a half-hour drive to Milwaukee, tears had rolled down his cheeks. He knew that this was it. He just hoped that he could see her before she left. He’d arrived at the hospital and saw his whole family there. He’d gone into her room and saw her in bed with her eyes closed. She woke a little and looked at him. He didn’t know what to say. He took her cold hand and told her everything would be all right. He’d known it was not all right and she’d known it was not all right. He told her he loved her very much. She’d wanted to see the entire family one by one when she would wake up. Each one of them went into her room to speak with her. Each one of them left her room in tears.
It had been night. X’s family and friends of the family were all there outside her room. She’d been unconscious for several days and everyone was saying it was a matter of time. X’s old friend R had arrived to say goodbye to his mom. They’d gone outside to smoke a cigarette. They’d been talking about how shitty life was. R’s mother had died one week earlier. Suddenly, X’s uncle came running out of the hospital, telling him to come quickly. X ran up the stairs to the fourth floor and into his mom’s room where he’d found everyone around her bed. They all looked down at her crying. Her heartbeat had slowed down and her breathing had nearly stopped. It lasted a little while. X’s dad held his wife’s head in his hands. X and his brother held their mom’s hand. His dad kept telling her, “just let go…just let go.” Finally, after her five-year battle with breast cancer, she had let go of life.
Afterwards, each person had had a little time to be with her alone. X stood next to the bed, looking down at her. He touched her hand. He gave her a kiss on the forehead. He didn’t know what to do. He didn’t want to leave her, but he knew he had to go. He looked at her one last time. He knew it would be the last time he saw her in reality. He turned and walked out of the room, forcing himself not to look back at her.
There was a funeral a few days later. Family and friends had gathered at the house. All X could remember was a low mumble of voices resonating off the walls of the kitchen. They left for the church. X stood by his dad and brother in the front row. On the other side of the pew were his mom’s parents, ages 80 and 90 years old. X couldn’t look at his grandpa because of the pain he saw in the old man’s eyes. He had outlived his only daughter, who he adored with all his heart. X grasped the pew in front of him to keep his balance. He didn’t hear anything. He fought to keep from breaking down in a fit of tears. His jaw was clenched. After the priest had mumbled his last word, X had been the first to walk out of the church with his brother and father. He looked straight ahead, fighting to keep his emotions inside him. He never stopped fighting the pain, hurt and loss that he felt that day. He pushed it deeper and deeper into his unconscious. They all did.
His mom had just died. There had been a lot of emotion everywhere. A couple days after the funeral, X was completely lost. He had no idea where he should go or what he should do. He’d been living Up North at his parents’ cabin, working as a cook in a small restaurant. He didn’t know if he should go back to that. Should he go back to the solitude of the forest?
His dad came home from work and X had his car packed to leave to go back to his refuge in the North. He stood next to his car, close to tears when his dad asked him if he was going somewhere. X told his dad he didn’t know where he was going or what he was doing. X just said he was going Up North. X saw the emotion in his dad’s eyes. His dad knew that X was lost, because he was lost himself. X had to leave right away. There stood two men overwhelmed with emotion and unable to show it to each other. He had to run. He just left it like that, tears flowing as he drove away.
That weekend, X spent the weekend drinking in solitude. By Sunday, he’d decided it was time to go back to his dad’s house. X began a new life and a new relationship with his dad. It was a relationship without a mother or a wife.
A few weeks after X’s mom died, he called his old friend R to see how she was doing. They got together and began to renew their friendship that they had before going off to college. They both had something in common. They’d both just lost their mother’s.
Chapter 5: Middle Inlet Creek
It was a very cold spring that gave life to the creek. The water ran swift and frigid throughout the year. Even in winter, its’ waters flowed underneath a hidden surface of thin ice. There were parts of the creek that flowed no larger than a finger’s width and other parts that were twenty feet across. Its’ depth ranged from one inch to over six feet, in certain holes. The overlaying brush provided a canopy of shade for those people who walked and fished the amazing trout stream. The creek at its’ destination, emptied into Lake Noquebay, roughly ten miles away. This lake was filled with trout, blue gills, bass and muskie. Sometimes large lake trout found themselves upstream in the Middle Inlet creek, a fisherman’s delight. Like the Willow Creek back at home, the Middle Inlet was also the two boy’s playground.
Finding the origin of the Middle Inlet had been a great adventure for the two boys. They’d start walking upstream in the creek early in the morning and continue until late afternoon, going deeper and deeper into the undisturbed forest. X remembered peace there. He remembered adventure and excitement.
As his fingers typed at the keys, X wondered if he’d felt this sense of adventure since then.
The crystal clear spring water flowed over rock and tree, twisting and bending through small niches of woods. In his mind, X saw the sunlight peaking through the ancient pines whose sap was glistening in the brilliant rays. Huge boulders overlooked the stream as it meandered with purpose to its’ destination, carrying life and beauty with each ripple.
The boys’ adventures took them to the limits and origin of the creek. They’d traveled into the depths of the deep forest. The creek dwindled and diminished slowly as they’d pressed on further. Sometimes, it was reduced to a mere line of trickling water. Then, without warning, it had vanished into the Earth where life was pure and refined, perfect and harmonious.
It had been their place to play. It had been the place to cool off in the summer months. It had been a place of pleasant solitude, where he’d heard healing melodies of flowing water. It had been a place to hear God if you’d chosen to listen. It had been the place where X’s life would never be the same, in one instant of change.
Finding the origin of the Middle Inlet had been a great adventure for the two boys. They’d start walking upstream in the creek early in the morning and continue until late afternoon, going deeper and deeper into the undisturbed forest. X remembered peace there. He remembered adventure and excitement.
As his fingers typed at the keys, X wondered if he’d felt this sense of adventure since then.
The crystal clear spring water flowed over rock and tree, twisting and bending through small niches of woods. In his mind, X saw the sunlight peaking through the ancient pines whose sap was glistening in the brilliant rays. Huge boulders overlooked the stream as it meandered with purpose to its’ destination, carrying life and beauty with each ripple.
The boys’ adventures took them to the limits and origin of the creek. They’d traveled into the depths of the deep forest. The creek dwindled and diminished slowly as they’d pressed on further. Sometimes, it was reduced to a mere line of trickling water. Then, without warning, it had vanished into the Earth where life was pure and refined, perfect and harmonious.
It had been their place to play. It had been the place to cool off in the summer months. It had been a place of pleasant solitude, where he’d heard healing melodies of flowing water. It had been a place to hear God if you’d chosen to listen. It had been the place where X’s life would never be the same, in one instant of change.
Chapter 4: Breaking Ground
X continued putting the words onto the page.
Some of his earliest childhood memories had been of Up North. His parents had purchased a parcel of land near his grandpa’s cabin on the Middle Inlet Creek. He remembered going to the plot of land on sunny morning with his dad, brother and mom. They parked on the road in front of the land and hopped out of the truck. On both sides of them was thick dense forest. The woods were mixed with large oaks, pines and poplar trees. Small brush of growing saplings grew from the fertile forest’s floor. X’s dad grabbed some cutting tools from the back of the truck and handed them to the family. Then he’d said, “Ok! Start cutting!”
With the small pruning shears in his seven-year old hand, X began cutting the little scrub brush on the land. He’d remembered being side by side with his Mom, cutting the small trees down. It had seemed like an endless task for the boy because there were so many trees. But, one by one, after a long day, an area began to take form. This area had eventually became the site of his Dad’s creation, the cabin. X walked with his Mom onwards; cutting whatever had been in their path. Then, standing on the top of a small hill with the pruning shears in hand, X had seen the Middle Inlet Creek flowing for the first time.
Some of his earliest childhood memories had been of Up North. His parents had purchased a parcel of land near his grandpa’s cabin on the Middle Inlet Creek. He remembered going to the plot of land on sunny morning with his dad, brother and mom. They parked on the road in front of the land and hopped out of the truck. On both sides of them was thick dense forest. The woods were mixed with large oaks, pines and poplar trees. Small brush of growing saplings grew from the fertile forest’s floor. X’s dad grabbed some cutting tools from the back of the truck and handed them to the family. Then he’d said, “Ok! Start cutting!”
With the small pruning shears in his seven-year old hand, X began cutting the little scrub brush on the land. He’d remembered being side by side with his Mom, cutting the small trees down. It had seemed like an endless task for the boy because there were so many trees. But, one by one, after a long day, an area began to take form. This area had eventually became the site of his Dad’s creation, the cabin. X walked with his Mom onwards; cutting whatever had been in their path. Then, standing on the top of a small hill with the pruning shears in hand, X had seen the Middle Inlet Creek flowing for the first time.
Chapter 3: Friday Afternoon Ritual
For as long as he could remember, it had been the same ritual. On Thursday nights, Dad would pack up the old Ford F-150 with all the things needed for the weekend. His Dad, his brother Shawn and himself all loved the Ford. It was a great blue color on the body, with white wall rims on the wheels. It had a standard transmission shifter on the column and on some rare occasions, his dad even let him shift the gears. His Dad had worked on the truck from time to time in the driveway, patching rusted holes in the body where the Wisconsin salting had eaten its dinner.
In the early days of their ritual, his dad had packed the truck with camping gear. They didn't have a roof over their heads where they were headed in the woods. The truck would be efficiently packed and ready to roll on Friday at 5:00 p.m. sharp, on Thursday night. On Friday, his Mom would pack a large red cooler filled with food for the weekend. The boy would come home from school and his Mom would be busy doing something around the house. Before leaving for their weekend Up North, in northern Wisconsin, she’d have the house in perfect order. She’d said the same thing each time before leaving.
“It’s nice to come back to a clean house”.
His Dad would come home from work, ready to roll immediately. Knowing that her husband was always eager to “get on the road” when he got home, she’d always have everything packed for the weekend next to the front door or in the garage. They’d pile into the old Ford, four across the bench seat with lap seat belts and a sun cracked blue plastic dashboard staring at them. This is how their weekends began. A family travelling together for a three and a half hour journey to northern Wisconsin.
Their first stop after the long hours in the cramped truck was in his Mom’s hometown, Beaver. They’d pull up in front of the house and opened the truck doors, smelling the sweet northern pine air. His grandma and grandpa, Frank and Stella, would be sitting in their Lazyboy reclining chairs waiting for them. With a couple good rocks on their chairs, they’d be on their feet to greet them with smiles, hugs and kisses. Fresh coffee would be put on while Stella’s lemon meringue pie would be served. The adults would talk about the projects for the weekend while the two young boys tried to keep their eyes open. After the pie had been eaten, they’d say their goodbyes and pile into the Ford to finish their journey.
It had been another thirty-minute ride for them until they’d reached their final destination in Middle Inlet. They’d turned onto Moonshine Hill road and had traveled deeper into the dark forest eventually arriving where the small boy called his real home. For years and years they’d made this voyage. It was their family ritual.
They’d arrived Up North.
In the early days of their ritual, his dad had packed the truck with camping gear. They didn't have a roof over their heads where they were headed in the woods. The truck would be efficiently packed and ready to roll on Friday at 5:00 p.m. sharp, on Thursday night. On Friday, his Mom would pack a large red cooler filled with food for the weekend. The boy would come home from school and his Mom would be busy doing something around the house. Before leaving for their weekend Up North, in northern Wisconsin, she’d have the house in perfect order. She’d said the same thing each time before leaving.
“It’s nice to come back to a clean house”.
His Dad would come home from work, ready to roll immediately. Knowing that her husband was always eager to “get on the road” when he got home, she’d always have everything packed for the weekend next to the front door or in the garage. They’d pile into the old Ford, four across the bench seat with lap seat belts and a sun cracked blue plastic dashboard staring at them. This is how their weekends began. A family travelling together for a three and a half hour journey to northern Wisconsin.
Their first stop after the long hours in the cramped truck was in his Mom’s hometown, Beaver. They’d pull up in front of the house and opened the truck doors, smelling the sweet northern pine air. His grandma and grandpa, Frank and Stella, would be sitting in their Lazyboy reclining chairs waiting for them. With a couple good rocks on their chairs, they’d be on their feet to greet them with smiles, hugs and kisses. Fresh coffee would be put on while Stella’s lemon meringue pie would be served. The adults would talk about the projects for the weekend while the two young boys tried to keep their eyes open. After the pie had been eaten, they’d say their goodbyes and pile into the Ford to finish their journey.
It had been another thirty-minute ride for them until they’d reached their final destination in Middle Inlet. They’d turned onto Moonshine Hill road and had traveled deeper into the dark forest eventually arriving where the small boy called his real home. For years and years they’d made this voyage. It was their family ritual.
They’d arrived Up North.
Chapter 2: Haircuts with Mom
Some of his earliest childhood memories were haircuts with his Mom. They'd always gone downstairs into the basement where they would find the haircutting instruments on the table. An old wooden chair sat in front of an even older mirror. A black comb, a pair of scissors and a hair clipper layed in a cracked floral bowl.
When he was a small boy, X asked her to cut his hair like the Fonz on Happy Days. Of course his
Mom would do her best to cut it like Arthur Fonzereli. He'd often worn a spike haircut in his teenage years, but on one strange occasion she had given him a permanent, pink curlers and all. They had ended up cutting most of his hair off after that. He remembered that it was their time together without interruption. The only sounds in the basement were their voices, the humming of an upright freezer, clothes tumbling in the dryer, and the snips of scissors.
X saw himself growing up in front of that old mirror, while his Mom had groomed him. He had very happy memories of those times they had spent together. His favorite part of the haircut was at the end. She took the scissors and trimmed his neck in short little strokes. There had been something about that sensation that had put X in a trance and at perfect peace.
As the words fell onto the page, Y heard snipping scissors and felt goosebumps tingling up his spine.
When he was a small boy, X asked her to cut his hair like the Fonz on Happy Days. Of course his
Mom would do her best to cut it like Arthur Fonzereli. He'd often worn a spike haircut in his teenage years, but on one strange occasion she had given him a permanent, pink curlers and all. They had ended up cutting most of his hair off after that. He remembered that it was their time together without interruption. The only sounds in the basement were their voices, the humming of an upright freezer, clothes tumbling in the dryer, and the snips of scissors.
X saw himself growing up in front of that old mirror, while his Mom had groomed him. He had very happy memories of those times they had spent together. His favorite part of the haircut was at the end. She took the scissors and trimmed his neck in short little strokes. There had been something about that sensation that had put X in a trance and at perfect peace.
As the words fell onto the page, Y heard snipping scissors and felt goosebumps tingling up his spine.
Chapter 1: Dear Mom,
X sat alone in the silence, looking at her picture. He believed in his heart that she could hear and see the words that he had begun to type. With each word he put onto the page, he believed it more and more. He believed that she was aware of everything now. Wherever she was, it was a place of peace. She knew that he spoke to her often in his mind. He asked her questions when he feared something or had doubts in his life. She was always there, in his conciousness to give the right answers or the right direction to pursue. She had become the voice of reason in his mind.
He had begun the letter because he needed her help again. He needed to relive the events that had taken place in the past thirteen years of his life. He needed her strength, knowledge and support to do this. He couldn't do it alone. He knew that it would be difficult at times, perhaps even more difficult than the events themselves, but they had to do it because he couldn't go on with his life the way it had been going. He had never tried to work things out in his head and the sadness had continued to pile up. It was taking him down further and further each day.
On this particular day while looking at her picture, he had decided to begin the process of accepting to move on with his life. He knew that he would never completely forget everything that had happened. In a way, he hoped he wouldn't. In overcoming and accepting these life challenges, he knew it would make him a stronger and more humble person.
Y knew he had to write the Story of X from a deep need to tell. Y began to type.
"I'm sitting here in looking at your picture. I believe in my heart that you can hear and see the words that I am typing."
The first words appeared on the page. The process had begun.
He had begun the letter because he needed her help again. He needed to relive the events that had taken place in the past thirteen years of his life. He needed her strength, knowledge and support to do this. He couldn't do it alone. He knew that it would be difficult at times, perhaps even more difficult than the events themselves, but they had to do it because he couldn't go on with his life the way it had been going. He had never tried to work things out in his head and the sadness had continued to pile up. It was taking him down further and further each day.
On this particular day while looking at her picture, he had decided to begin the process of accepting to move on with his life. He knew that he would never completely forget everything that had happened. In a way, he hoped he wouldn't. In overcoming and accepting these life challenges, he knew it would make him a stronger and more humble person.
Y knew he had to write the Story of X from a deep need to tell. Y began to type.
"I'm sitting here in looking at your picture. I believe in my heart that you can hear and see the words that I am typing."
The first words appeared on the page. The process had begun.
Prologue
The circle of fire spun incessantly in his mind. From then, until now.
He looked on as the flaming orange tire extinguished itself on the white snow. They all stood on the pond, laughing their guts out, as each one took their turn riding through the wall of flames. The small boy, then seven years old, watched in awe as his fearless older brother made another pass at the fire with his bike. Again, the tire caught fire from the gasoline that had been aimlessly poured onto the thin ice. He didn't know where the red gas can had come from. Maybe one of the neighborhood kids stole it from someones garage. Or maybe it was found among the other castaways in the junkyard that surrounded the pond.
He never thought about how or why a place like this existed until later in his life. As a boy, it was just another part of his limited reality. The ponds were in the external zone. It was the outer limit of where his parents would let him go. Although the parents knew the place existed, they thought that their instructions not to go there would be enough to stop their two young boys. For their youngest boy, it was a place of interdiction. The place to break rules.
The first time he had gone there with his brother, they had followed the small creek that ran throughout the middle of their subdivision in order to find its source. At the banks of the creek were large weeping willow trees. The long branches and vines of leaves canopied the small creek with shade. In the trees, they had played for hours and hours, always finding new adventures. The creek traversed a golden field of grass. When the creek reached the road, it passed below a large metal culvert, a large steel tube they could walk through. They threw rocks in the tube to hear the strange echoes it made and had braved through spider's webs filled with suspended insects. In the Winter, the creek would freeze and they walked and skated on the frozen waters. In Spring, they searched for tadpoles and frogs, pushed each other into the water to get "soakers" or wet feet, and even started an annual Mud Day. The melting snow flooded the field on both sides of the creek, leaving it the perfect place for the young boys to ride bikes and get really dirty. They'd ridden through the muddy creek waters and screamed with laughter. It was their playground. It belonged to them.
The Willow Creek cuts directly through the Lynndale Farms subdivision. At the highest hill in the company of homes, you see the creek meandering through the golden field, protected by the Willow tree guardians. It was a beautiful image to see coming home each day. But, just beyond the thicket of forest, in the back corner of the subdivision, was the source of this beauty, the ponds.
It had been some sort of junkyard. Old abandoned train cars were scattered tragically around the murky ponds. Farm equipment, tainted orange from years of rusting, deteriorated wooden crates, scrap metal, and curious metal barrels, unmarked and filled with something, had been strewed in all directions. Some of these barrels were seen peaking out of the dark waters of the pond, like an evil creature lurking in its lair.
The kids from the neighborhood never talked about the barrels. What was in them? How did they get there? They didn't care because it was all just part of the playground. How many times had the small boy put his little hands into the water grasping at frogs? How many times had he accidentally fallen into the deep lair of the silent barrels?
Years passed, the boys grew up and the ponds were forgotten. Then, their names had risen out of the murky depths onto the lips of the boy's mother. Perhaps this is why I got breast cancer? Maybe there was something that contaminated the drinking water? The ponds were close to the house. Their family hadn't known why or how she had gotten cancer and died. It was only after the boy himself had also gotten cancer that he thought that there was a connection between the two illnesses and the ponds.
The boy, now a man, had thought incessantly for nearly a decade about his illness and possible causes of it. Circling, circling in his mind like the flaming tire, burning across the pond.
He looked on as the flaming orange tire extinguished itself on the white snow. They all stood on the pond, laughing their guts out, as each one took their turn riding through the wall of flames. The small boy, then seven years old, watched in awe as his fearless older brother made another pass at the fire with his bike. Again, the tire caught fire from the gasoline that had been aimlessly poured onto the thin ice. He didn't know where the red gas can had come from. Maybe one of the neighborhood kids stole it from someones garage. Or maybe it was found among the other castaways in the junkyard that surrounded the pond.
He never thought about how or why a place like this existed until later in his life. As a boy, it was just another part of his limited reality. The ponds were in the external zone. It was the outer limit of where his parents would let him go. Although the parents knew the place existed, they thought that their instructions not to go there would be enough to stop their two young boys. For their youngest boy, it was a place of interdiction. The place to break rules.
The first time he had gone there with his brother, they had followed the small creek that ran throughout the middle of their subdivision in order to find its source. At the banks of the creek were large weeping willow trees. The long branches and vines of leaves canopied the small creek with shade. In the trees, they had played for hours and hours, always finding new adventures. The creek traversed a golden field of grass. When the creek reached the road, it passed below a large metal culvert, a large steel tube they could walk through. They threw rocks in the tube to hear the strange echoes it made and had braved through spider's webs filled with suspended insects. In the Winter, the creek would freeze and they walked and skated on the frozen waters. In Spring, they searched for tadpoles and frogs, pushed each other into the water to get "soakers" or wet feet, and even started an annual Mud Day. The melting snow flooded the field on both sides of the creek, leaving it the perfect place for the young boys to ride bikes and get really dirty. They'd ridden through the muddy creek waters and screamed with laughter. It was their playground. It belonged to them.
The Willow Creek cuts directly through the Lynndale Farms subdivision. At the highest hill in the company of homes, you see the creek meandering through the golden field, protected by the Willow tree guardians. It was a beautiful image to see coming home each day. But, just beyond the thicket of forest, in the back corner of the subdivision, was the source of this beauty, the ponds.
It had been some sort of junkyard. Old abandoned train cars were scattered tragically around the murky ponds. Farm equipment, tainted orange from years of rusting, deteriorated wooden crates, scrap metal, and curious metal barrels, unmarked and filled with something, had been strewed in all directions. Some of these barrels were seen peaking out of the dark waters of the pond, like an evil creature lurking in its lair.
The kids from the neighborhood never talked about the barrels. What was in them? How did they get there? They didn't care because it was all just part of the playground. How many times had the small boy put his little hands into the water grasping at frogs? How many times had he accidentally fallen into the deep lair of the silent barrels?
Years passed, the boys grew up and the ponds were forgotten. Then, their names had risen out of the murky depths onto the lips of the boy's mother. Perhaps this is why I got breast cancer? Maybe there was something that contaminated the drinking water? The ponds were close to the house. Their family hadn't known why or how she had gotten cancer and died. It was only after the boy himself had also gotten cancer that he thought that there was a connection between the two illnesses and the ponds.
The boy, now a man, had thought incessantly for nearly a decade about his illness and possible causes of it. Circling, circling in his mind like the flaming tire, burning across the pond.
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