Death always comes too early, or too late...
It was the same all over again. He should be pissed, but he wasn't. He went through that the first time, the anger, the crying, and the depression. The news was nothing that he wanted to hear, but there it was. Just like when he was eight. Sorry kid, you're fucked. The Big C. Only this time it wasn't cancer it was kidney failure. Yeah, remember those drugs that we gave you to save your life, well it seems that they ruined your kidneys, and you're fucked. And best of all you'll be on dialysis three days a week. Costs an arm and a leg, but you'll be alive. But you're still fucked because you'll be on it the rest of your life.
His options weren't that great, dialysis for the rest of his life or some poor schmuck dies and leaves you a kidney. In any case you're still fucked because that costs a fortune. And even if you had the money the odds of getting a kidney would only be rivaled by the odds of winning the lottery. I mean, who's going to give a kidney to a sixteen year old kid from a dirt poor family? And after looking into it, he couldn't get on the donor list until he was cancer free, which was another five years. Yeah, you're fucked.
It was old news, he went through it before when they told him he had cancer. First time through he did all those things that everyone did when they found out that they have cancer, or some other deadly disease, he prayed, offered up a chaste life to God, all those things that people do. He still didn't know if praying worked, it took five years to get over it. Over it? No, you never get over it, you survive it.
This time, it wasn't death that he feared, no, everyone dies, it's the only thing you are guaranteed when you are born. His fear was what he was doing to his family. God knows what this is doing to them. At times all he could do was think about the pain and anguish that his medical conditions caused them. From his mom and dad, Sean and Veronica Bailey, to his two sisters, eighteen year old Patricia and thirteen year old Valerie, all suffered his fate, so to speak. They lived and died with every test, every treatment, everything he went through they had to as well. It was a bad time.
That is not to say that there weren't good times, there were. In fact there were a number of good times they had as a family during his bout with cancer. They may have been few and far between, but they were there, and he latched onto them and held onto them tightly. What other memories were there that he would care to remember during that time?
But the absolute best time of his life was right after he was diagnosed cancer free. At twelve years of age things were looking up and all he had was good times and great memories. He was back in school, hanging out with people his own age, enjoying being a kid again. Something that he had not done since he got cancer. It was a heady time for him, and he enjoyed the hell out of it.
It lasted just shy of two years. Soon after he turned fourteen he began having nocturnal urination problems, which was better than saying he pissed in his bed, and he was not gaining weight or growing the way other twelve year olds were doing.
Another round of tests, and there it was, kidney failure, it was better than cancer. He was fine with that, he wasn't angry. That is until they determined what the cause was, over medication of the cancer treatment. Seems the hospital had recently started a youth cancer treatment program and, well, they fucked up the amount of medication they gave him. THAT is what pissed him off the most.
When he was diagnosed with kidney failure, he was at stage 3 on a 5 scale. He wasn't sure what the future held for him, but his doctor, Doctor Sawyer, told him everything, never sugar coating the answers no matter how hard or difficult those answers were. She never held anything back, telling him in detail what symptoms to expect, the survival rates, and what the disease can lead to. But, most of all, he could see that she cared, it was in her eyes as every time she had to give him news or answer a question that was hard to hear, he could see the pain in her eyes as she talked. To him that meant a lot.
Stage 3 required a change in his lifestyle impacting the entire family requiring that he follow a strict diet as well as medication for the onset of diabetes. It was not as difficult as he thought it would be, but the change was still difficult. He just got into the swing of this new disease in his life when just over two years later it progressed to Stage 4 requiring dialysis, another significant change in his, and his family's lifestyles.
And that is where he was today, tossing and turning in bed trying to figure out his life, where he fit, where he was heading, and most troubling, how he felt about it. Since the time he got sick he never thought of where he fit or where he was heading, it was always about listening to his parents and he followed what they said. But now he didn't think of what his parents said or felt. And as he tossed and turned he just couldn't get his mind wrapped around it. He felt disconnected with who he was and was lost. And with being lost he was unable to figure out where he fit or where he was heading, or how he felt about his life.
Not able to sleep, he sat up in bed and swung his legs over the side of his bed and thought maybe a glass of milk with help him get some sleep. He nodded his head and stood up, stretched and walked out of his room heading to the kitchen. As he turned the corner he became aware that the kitchen light was on and he could hear his parents talking in the kitchen. He stopped and listened.
"I've called Jimmy and he can get me some extra hours, it's under the table but I don't care, it's money," his dad said softly.
"Night work? You're taking too much on," replied his mom softly and with great concern in her voice.
"We don't have much choice, he's going to need to go to the Medical Center three times a week and we need gas and food money for the trips."
"I can make sandwiches, that will take care of the food."
"It's June, and you're going to keep the sandwiches cool in the car?"
"I'm sure they have a fridge at the Medical Center we can use. What about working Overtime?"
"That still doesn't help with gas. I talked to my supervisor about overtime and he says since I've only been on the job for a year I'm low man and others will get assigned overtime before me. That well is dry." His voice got shaky and cracked as he said, "I don't see how we are going to make it honey."
"We will get by."
"The medical bills are outrageous. It's June and we're already up to our eyeballs in bills."
"I can get a job during the summer."
"And how will we get Patrick to and from his appointments?"
"My sister can help."
"Sarah? She's four months along and you want her to drive two hours each way to Patrick's appointments? No, that won't do."
"Maybe Patricia can get a part time job over the summer to help out?"
"I'm afraid she will have to. Or maybe she could drive Patrick?"
"And I could get a job. That could work."
He sighed heavily and said, "It will have to."
After hearing the conversation he forgot about the milk and went back to his room and tried to fall asleep but found it difficult as before. He loved Patricia, she was the best. And he hated the thought that she would have to drive him the rest of the summer. She had plans to hang out with her friends, being that it was her last summer. Next summer she was planning on moving out on her own after she graduated, and this would be her last summer that she was to call her own.
The following days were tough. Very tough. Patricia was livid and though she did not blame him directly he still couldn't help but feel responsible for screwing up her summer. There was also the problem of what his youngest sister Valerie was going to do. She couldn't stay home alone three days a week, she had to go somewhere. And if she went to summer camp that would cost money, putting the family further into debt. The other problem was once they remembered about Valerie, they never asked her opinion, so now his other sister was indirectly pissed at him.
At no time since he got sick, with cancer or now with kidney failure, did he ever feel like that everyone would be better off if he just, died. Never. Until now. Up to this point there was hope, hope that he could live and have a happy life. But today he silently questioned if it was all worth it. Was it worth living an extra year if all it would bring was anger, resentment, and insurmountable bills? Is it worth a year of his life to force his sister, or anyone for that matter, to drive 12 hours a week, and wait for four hours for the dialysis to complete?
Over the next few days he spent most, if not all, of his time working out in his mind what all of this meant to him. It wasn't that he questioned what happened to him, that was quite evident, it was more to the point how he saw himself and what he would do about it. If anything, losing control of his life was more debilitating than the disease. And that is when the pieces of the puzzle began to coalesce in his mind. Everything that he found missing was due to a loss of control. He felt that he no longer had control of any aspect of his life. In all that had happened to him he was never asked of what he wanted to do, it was all his parents. For an eight year old that is fine, but he was sixteen, aware of what was happening to him, and what was happening to others, and that tore at him.
Whatever happened before was done without his input, or consent. But, this time, that was not going to happen. To get his mind set in what he wanted, he had to get it straight that it would be his decision, He could no longer stomach having someone else make decisions about him, decisions that impacted him and the entire family, decisions that he had no say in.
It was another day before he put everything in order. First it was to be his decision what happened to him. Second, he could not in good conscience allow his family to keep paying for him. He had to stop this. And all he could think of was to stop dialysis. Unfortunately that had only one consequence. One which he was willing to accept.
As the week came to an end, he was outside doing yard work with his dad. He had spent a good portion of the week trying to find the right way to talk to him about his life. But how do you tell your dad that you don't want to be a burden to him and the family anymore? The only thing he knew for sure was he wanted it to stop.
There was no plan, there was no easy way of telling his dad what was bothering him, so he just stopped weeding got up and walked over to his dad who was working on the lawn mower, "Hey Dad."
Without looking up he replied, "Hey Patrick."
There was no way to do this easily so he just jumped in, "I was wondering, about the costs for my treatments."
Without looking up he replied, "Oh, don't worry about that, just concern yourself with getting better."
He shuffled his feet and sucked up his courage and pressed the point, "Yeah, but, what if, what if I don't get better."
Still focused on the lawn mower he said, "But you will."
"Dad, I was there in the doctor's office. I heard the same thing you did. There is no getting better" the last part was said with some harshness.
His Dad stopped and looked up at him and said with some force, "You can get a transplant."
Without blinking he replied, "Dad, I had cancer, I can't get on the list for another couple of years."
His dad stood up and looked at him in the eye, "So you have to stay healthy for two years."
He wanted to break away from his dad's gaze, but he had come too far, "At what cost Dad?"
His dad blinked and went down on one knee to work on the mower again as he said, "That's not your concern."
He tried to keep his cool, but how can he say that! "How can it not be?"
He quickly stood up and in a cool and straight forward tone said, "Patrick, you are my son, there is no cost that is too great."
He felt his dad's growing anger, "It's not just the cost, Dad. Look at what it's doing to the family."
His eyes softened as he said quietly, "Have you thought about what will happen to the family if you, well, you know."
Finally he was listening, "What's more important, my life or the family?"
His dad just looked at him.
"Dad, I see what's happening now to the family, I see the pain in Mom's eyes, the strain this has put you through working two jobs to pay the bills. Everyone's life has been turned upside down because of me. And now, now I'm not sure I want everyone to, keep paying for it."
He could see the mist in his dad's eyes begin to form, "What are you saying Patrick."
In a soft but cool voice he said, "I want to stop going to dialysis."
His dad turned away from him and wiped his eyes before turning back to him and asked, "Do you know what you are saying?"
In the strongest voice he could muster he said, "Yes. Yes, I do."
He could see his dad knew what he was thinking, that he could see in his eyes that he was serious. He shook his head no and said softly, "No. Absolutely not. There is no"
He cut him off before he could continue and said, "It's my life Dad, shouldn't I have some say in it?"
"Well, yes, of course. But Patrick, you are, too young to know"
In a flash anger rose in him. That's what all adults say when they want to end an argument, but he wasn't going to let it end, not like that, and he said what he knew would get his attention, to let him know that he understood his place and where he was going, "I will die young, Dad."
His father's face got red as he almost shouted, "No you will not!"
He persisted and said, "Dad, I will never make twenty."
His dad was losing it, Patrick could see him trying to pull it together, but he was having a hard time of it as he said, "When you have kids you'll know I was right."
It was his turn know to shake his head no as he said, "I will never have kids Dad."
"Yes you will. You'll get better, you'll see."
He hated doing this, "I love you Dad, but I will never get better, this is it. From here on out I will get worse. Let me go now, before it gets worse for me, and the family."
His eyes watered again, and as his voice quivered he said, "NO! Never."
His eyes began to mist as his voice cracked as he said, "You will have to Dad."
His dad's voice cracked slightly as he replied, "Don't talk like that."
He shook his head again and said, "I see no other way Dad."
His voice cracked, "This, this will kill your mother."
"No Dad, it won't because she has two other kids that will need her."
He stood looking at him before shaking his head, "This is wrong Patrick. You're wrong."
The flood gates came undone as he began, "Since when has anything been right? I was eight when I got cancer. Do you know how many times I was picked on when I lost all of my hair? Or how some of the kids wouldn't play with me because they were afraid they would get cancer? Three years it took to beat it. And now my kidneys are failing because of the cure. And I can't get on the transplant list because you have to wait seven years to be declared cancer free. What in all of that was right?
"Dad, the way I see it, I can prolong my life in hopes of making it a few years to get on the list and put us into debt and cause more havoc in the family, or I can accept what I have and no longer be a burden."
"You are NOT a burden. We love you and there is nothing we won't do for you. No cost is too great"
Pleadingly he cut his dad of again, "But, I don't want you to PAY that cost. I'm not willing to have you, or anyone, pay for me."
"We want to."
"Dad, as long as I've been alive, that's all you've ever done is pay for me. More than you should have. And now, I don't want you to, I'm no longer willing to accept it."
"It's not your decision to accept our help or not."
He felt himself losing it as he nearly shouted, "But it's my life!"
He knew he'd pushed him too hard as he could see his dad dig his heels in and say, "Until you turn eighteen it's our decision!"
He was quiet for a moment, letting the words his dad said sink in. He had no choice in the matter, it was their decision, and not his. "So, you are going to make me suffer?"
"By making you live? Dam straight!"
"Fine. But think about this, one day you may be laying in bed facing the end of your life and racked with pain, and the only way to end it would be to let go of your life and die. But no one will let you. No one will listen to what you want. So you lay there in pain, waiting for the end to come. That is where I am." He turned and walked away. But where to go? He had no close friends. No one to talk to. His sister Patricia hated him, and Valerie, well, why would he want to put this burden on her?
With nowhere to go he went for a walk to clear his head and to gather himself. His dad wouldn't, or couldn't, see his point of view. And if he couldn't get his dad to see it there was no way to get his mom to. Dad was the key.
Next week would be the first day that Patricia would be driving him to the Medical Center, and he was NOT looking forward to the drive. As with most of his life, it was going to be difficult to get through, and there would be more to come. He never lost sight of what he wanted and spent a lot of time thinking on how best to move forward, most of what he thought of was just, anger. But he knew he couldn't show it. If he let it out he was afraid that he would never get it under control, and once the genie is out of the bottle there is no getting her back in. And he didn't want anyone to remember him that way.
So as he got in the car for the two hour drive he went over his plan once again. He snickered to himself, the plan. There was no fucking plan, he was going to wing it and pray to God it worked.
They had been on the road for thirty minutes before he gathered up his courage, "I'm sorry about this, you know, screwing up your summer and all."
Without taking her eyes off the road she replied, "Well, sure. No problem Pat."
He had to drive it home, to let her know that he understood her sacrifice, "Really. I mean it. I know you are giving up your last free summer."
She gave him a quick look and smiled as she said, "That's okay Bro, we're cool."
He took a deep breath and said, "And, uhm, I know how to fix it."
Laughing she replied, "Sure you do."
She thinks he's playing with her? Shit this was not something that he thought of. He sighed and said, "No really, I have a plan."
Still laughing she said, "Okay, I'll bite. What is your great plan?"
"I can stop going."
She laughed even harder and said, "Yeah, right. Stop going. What will Mom and Dad say?"
"Well, they don't need to know."
Shaking her head she said laughingly, "Sure. Up until you die."
"That would be the plan."
Her laughter trailed off when she realized that he was serious. Finally breaking the silence she asked, "What are you saying Patrick?"
"Without looking at his sister he said, "I don't want to go through this anymore."
Her voice got hard as she said, "Don't fool around like this Patrick. It's not funny."
He countered quickly and forcefully, "I'm not trying to be funny. I just want to stop all of this bullshit, and let things go as they should."
"You mean die!"
She quickly pulled the car over to the side of the road and put it in park keeping both her hands on the wheel and not looking at him. After a minute she removed her hands from the wheel and turned to him and said, "Stop saying that!"
He was taken aback by her reaction, so strong and forceful. He was caught off guard for a moment when he asked, "Why?"
She scrunched her nose and said with disbelief, "Because"
He shook his head, "Listen, pretty soon, half of my life will be spent terminal. I got cancer when I was eight. I'm sixteen and now I have kidney damage that will cause me to be on dialysis for the rest of my life. And the costs are, huge. Mom has to get a job, Dad's working two jobs, you have to drive me back and forth three days a week, I don't want anyone to pay for me anymore."
She whipped the tears from her eyes and said, "Okay, I was pissed about driving you, but I don't mind."
"You might not mind driving me, but I do. I am tired of being sick, I will never get better, so why should I continue when I don't want to?"
Placing her hand on his arm she said, "But there's so much to live for."
The touch of her hand upon his arm was startling and unexpected causing him to flinch and almost pull away. "What is there that I've not done that would possibly make me want to put up with what I'm going through today?"
She leaned back onto the door and pulled her legs up onto the seat and crossed them as she smiled and said, "Everything. Life is so, important. Growing up, meeting the person you're going to marry, having kids, and, well, life!"
"That might be what you see for yourself. But for me? I don't think I'll see twenty. And, if I don't want to be a, burden, now to my family, why would I want to meet someone and fall in love with them just to die soon after? No, I would never want to do that to someone."
She looked at him sternly and he sensed that she wanted to say something but held back. He could see the frustration in her face trying to come up with something to say, to counter him. But nothing came from her.
"I can see you wanting those things, and I hope you get them. But, for me, I don't want those things, I want something different."
"Did you ever think that, maybe, you're in this, funk, because all you know is what you lived through? If all you know is pain, or sickness, then maybe that is all you'll see, all that you would expect around you."
It was his turn to scrunch his nose. Could it be that she was right? What if everything he had been through had clouded his thoughts on life and what there was for him in the future? He never thought of the effects of being sick would have on him or his outlook. He needed to put more thought into this.
He was snapped out of his thoughts as Patricia pushed him along, "So let's look at other things to the list, like sex, getting drunk, getting high, driving a car, hanging out with friends. There must be another, two, three hundred things that you can do to enjoy life. All you have to do is fight for it."
Before he could catch himself he said, "Out of all of those the only one that sounds appealing to me is sex."
She laughed heartily and said, "Big surprise there. Typical guy."
He blushed and said, "We should get going."
Patricia leaned over and hugged him tightly. As with the touch this caught him by surprise, but he did recover enough to hug her back. As they disengaged, he began to run the conversation through his mind, remembering how she looked, her responses, her thoughts, and most of all their physical connection. They were never a touchy feely family, but they were not distant either. It was hard to explain and the more he tried to categorize it the more he failed. Ne knew that they loved one another, that they cared for each other, but physical contact or expression was not one of their strong points. Maybe that was the missing piece of the puzzle? Maybe he needed that to turn his mind around?
Whatever happened today, it caused a shift in his mind, and most probably shifted the direction of his life.