From Illusions to Truth

2006-05-08T16:15:00.000-07:00

This story is based on something that happened in real life. Though the people in this story are not real, these experiences and ones like them are.
*****
It really is hard to tell how it all started. It should have been sudden, right? For some reason though, everything was blurred. Why was it blurred? It is simple to tell the times that weren’t affected from the times that were, but it is impossible to find the one point where those two times met. There has to be such a point, but the more I think about it, the more confused I got. I kept trying to find it. I kept on going back in time to find where it all began, where everything started.
*****
Perhaps it was when small hints started showing. That was when it started, right? I might not have known about it, but it was still there. When I was seven, Thomas four, and Robert still in our mother’s womb, strange things started happening. Every night my family would come together at the kitchen table for dinner. Everyone ate a bit of everything along with one glass of water. That was what happened. That was what happened every night without fail. Then, one night was different. I was sitting across from my father, watching him eat. I was trying to find something else to do so I didn’t have to eat the salad. And then I saw the strangest thing.

My father was getting out of his chair to get another glass of water. Now it was normal to get some water if my mother had made something spicy, but today we were having spaghetti. My mom never made that spicy. I noticed that my father had left the table to go do this about three or four times by then, which was a lot. Something was wrong, and I wasn’t the only one who noticed it.

“Nat, why is Dad drinking so much water?” Thomas whispered to me. The only answer that I could give was a shrug. I didn’t know. My mother was sitting there like everything was alright. Did she know something that Thomas and I didn’t
*****
Stranger things had happened after that incident. My dad still kept on drinking a lot of water at meal times. Then I started to notice other things. He was complaining about gout. Gout has something to do with inflammation in the joints, or at least that’s what the dictionary says. Suddenly pills started appearing. Sometimes searching for my homework in my parents’ room, I’d find empty bottles with strange labels on them. There were phosphorus binders and blood pressure medication.

After awhile it became common to come across these things. The problem was that every time I asked about them, I was told that there was nothing for me to worry about. For some reason, that tone of voice communicated the opposite. There was something to worry about. The problem was I didn’t know what.

Shortly after the water incident, as my brothers and I now called it, there was a change in diet. It was nothing too noticeable by sight. It just was the taste that wasn’t right. The food lacked salt. Anything that could raise blood pressure was also removed from the menu. Food high in potassium, uric acid and protein managed a disappearing act as well. There was hardly anything dripping in fat or very much meat; all of our food tasted bland. At first we didn’t really think it was anything. We all thought that our mom just hadn’t put enough spices into the food. After a few months it was deemed impossible for our mother, who was a superb chef, to consistently forget to put enough salt into the food. Even when we asked our mother to cook certain foods, those foods never found their way to the kitchen table. I started to get even more suspicious that something was wrong.

My dad wasn’t home that often. He was spending more and more time at work and at the hospital. Now a person would think that all the time at work was because Robert was born, but that didn’t give a reason for all the hospital visits. I knew that hospitals were places where sick people went. If my dad was going to the hospital, then something must have been wrong. But nothing could be wrong with my dad, right? Nothing could hurt my dad, right?

*****
Everything started coming together when Robert had a nightmare. Robert was only five, Thomas nine, and I was twelve. Thomas slept on one side of the room and had already started to snore. Then we heard a knock on the door. Thomas woke up, managed to drag himself from bed to the door, and drowsily opened it. There was Robert standing at the door with his thumb in his mouth.

He took it out to momentarily say: “I had a bad dream. Can I sleep here tonight?” Robert didn’t wait for an answer and started jumping on my bed, waking me up from a very beautiful dream where school was cancelled for eternity, money grew on trees and parents could stay home with their children.

“I had a bad dream that Daddy had to go to the hospital in that weird car with all the lights on it. There were all these people dressed in white who started taking kitchen knives and cutting him. Then Daddy never came back,” Robert explained. Robert had done this with our parents many times. At this moment Thomas decided to sit on my bed too.

“You’re worried about nothing, Robert,” I said.

“Are you sure? Dad keeps on going to the hospital a lot,” Thomas asked.

“Yeah, well, nothing is wrong ‘cause this is our dad we’re talking about. Nothing could hurt him,” I said.

“Daddy can’t be beaten by anything,” Robert added.

“But Dad’s still human. Humans get hurt too,” Thomas countered.

“Nothing’s going to happen, guys. Go to sleep. Thomas, quit being so negative,” I said. Thomas went back to his bed; Robert decided to turn my bed into his nest, so I ended up having to sleep in the chair and woke up with a very sore back.

Looking back, I see now that we were in denial. We knew something was wrong but wouldn’t listen to it. Our world was crumbling now, changing into something unknown.
*****
Two years later, the three of us were sitting on the staircase after dinner. There was a small landing between the flights of stairs that we could sit on and see into the kitchen. We sat there cracking jokes about teachers, school and politics. Actually, Thomas and I were joking about politics. Robert didn’t know a thing about what was happening.

Suddenly we started to hear voices. Of course there were voices whenever our parents talked in the kitchen, but this was different. Normally you could hear laughter from the kitchen and happy voices. This time the voices were angry. There was also fear in those voices.

“… shouldn’t tell ... too young … need to grow up … fast.” That was from Mom.

“… old enough … know… can’t… in … dark …,” Dad countered.

“… still … school. Knowing… problems,” Mom said, starting to destroy dad’s argument.

“… need to know… kidney ... know … might happen…shouldn’t find … have … go … surgery!” Dad said.

The voices were starting to almost reach the point of screaming. The three of us had enough of listening to our parents yell at each other over something that we didn’t even know. We ran up the stairs and hid in our rooms.

Late that night everything came together. I was lying in my bed staring at the ceiling. Surgery, kidneys, blood pressure, the medicines, the food, the water all of these were pieces of a large puzzle. Something was wrong with my dad’s kidney. I didn’t know what, but whatever it was my dad had to go to the hospital a lot because of it.

A world that was based on the most solid things in life finally shattered that night. A family that once knew everything they needed to survive in the world suddenly became lost.
*****
It seemed that sometime later my parents had come out and said that my dad had kidney disease. I knew before they told; Thomas seemed to understand some of the hints, and once again Robert didn’t know a thing that was going on until our mother gently told him that Daddy was sick and might die. Of course Robert didn’t understand this idea of dying, so he didn’t really bother about this whole thing of death and sickness.

For awhile there seemed to be no hope. My dad seemed to talk of nothing else but death; plans for what would happen after my father’s death were coming together. It was starting to get on my nerves. Actually, it was past my nerves, I was going to explode. Thomas definitely believed everything that our father said and was distraught. He had become extremely clingy to our dad. I was worried too; not about death but after it. Money, college, everything that I once thought only parents should worry about I started to worry about as well. Robert still didn’t understand anything except that our dad was feeling very bad and was sick. Robert started spending more time with our father, talking about what happened at school.

Then my dad had to go for surgery. The doctors were putting some things into him: a catheter and a graft for peritoneal dialysis and hemodialysis. A catheter is a tube that goes from inside the stomach to outside. A graft is a tube connecting veins/arteries in an arm. Dialysis is when a machine or fluid other than the kidney cleans the blood. Since my dad’s kidney wasn’t working to filter his blood, a machine was going to do it. For peritoneal dialysis some fluid was going to be put into my dad’s stomach and that would do the filtering. Hemodialysis involved a machine cleaning the blood in my dad by putting some needles connected to the machine into my dad’s graft. The blood was cleaned in the machine.

My dad came back after a couple of days. Unfortunately that surgery wasn’t very discreet. Where the graft was placed in my dad’s arm there was a large, long scar. In the beginning it was disgusting to look at. There was watery, yellow stuff that occasionally would start to come out of the wound, dripping. The graft did something to my dad’s arm so that now I could see the pulse in the arm. It was like the vein was trying to push itself out of the arm. It was disquieting, like seeing a heart beating outside of the body. I wouldn’t go near my dad for a couple of days because of it.

The stomach was at least a bit better. There was now a long tube that came from the inside of my dad to the outside. It was a catheter. There was a cap on the end of the tube. It irritated my dad a lot because he was always complaining that it was pulling. It started to be normal to come home and see my dad sitting in a chair, with a bag of fluid hanging from what would look like a coat rack, attached to the catheter. One of the weird things though was watching the fluid drip down into what I knew was my dad’s stomach. After awhile it eventually became normal, but my brothers and I still avoided him when he was busy with that. Sadly enough, by the age of 14, I had learned how to set up everything for my dad to do dialysis. Things that I probably never guessed I would do, I suddenly did. Everything was happening too fast.

At least the peritoneal dialysis thing was only for a few weeks. After that my dad had to go to a dialysis center to have a machine clean his blood. This happened three days a week and took about three or four hours. Because this took up so much time, my dad started working even longer hours. It was unusual to see him at home before I had to go to bed. Whenever he was home he would complain about how it hurt having the needles poked into his arm where the graft was. The only thoughts that were going through my mind at the time were: Why isn’t there a cure? And why can’t I be part of a normal family where dads were home at 6:00 PM and aren’t poked with needles?

All of this kept on happening for a while until we found out that there was a possible solution. If my dad got a transplant, then it would be as if his kidney hadn’t failed. All they had to do was find a person who had a matching kidney. That didn’t take long, though. It turned out that my dad’s brother had a matching kidney and would definitely give it to him. It would be alright for him, because people have two kidneys and a person can survive with just one.

Finally all of the plans were made. My dad would fly over to Atlanta, where my uncle was. The surgery would be done there at the hospital and my dad would stay with my uncle and aunt for a few weeks to recover. Then my dad would come back home and everything would be back to normal. My mom would have to stay here because someone had to look after me and my brothers.

It was the first time that my dad had ever gone across the country by himself. Normally the entire family would have gone. What made it even worse was that it was to do a surgery. It was not just any surgery–my dad was going to get a new organ. That meant that the immune system would treat it as something foreign, would attack it and then reject it, a bit like how armies at war would behave when they see someone of the other side. If that happened then my dad would need to find another kidney, which could take awhile. My dad knew someone else who had kidney disease and that man was on the waiting list for a kidney for years. That meant it could take forever for my dad to get another chance. And what if the doctors messed it up? What if they cut something that they weren’t supposed to cut? What if they did something that killed him? I knew my dad had been talking for ages about what to do if he died, but that didn’t mean I was ready for it!

But my dad still went. The flight was late at night on a school day so my brothers and I couldn’t go with our dad to the airport. Before my parents left, my dad promised to call us the next day. The three of us had made a little card for Dad to read when he got to Atlanta, and at Thomas’ insistence, put a little note for the airport security people telling them that the letter was a get-well card and that it was extremely bad manners to read it.

In Atlanta, my father must have been frightened as he waited for the operation. I could tell when my father called, saying that he had made it to Atlanta. My father’s voice was shaky and uncertain. I knew that it must have been scary to be going into a major surgery like this, especially all alone. I still think that it was probably worse over here.

In a way, everyone was affected by this. I suddenly was obsessed with learning about my father’s potential killer. It wasn’t unusual for me to say that I was going to the library to study. I wasn’t really going there to study. I was going there to find out about kidney disease. It seemed that the more I found out, the less scary the disease was. Perhaps it is true that the scariest thing is the unknown. I didn’t want to believe that everything was true, though. I clung to this nice illusion that all of this was a bad dream. I wasn’t about to chase it away. I didn’t want to truly face reality.

I seemed to be doing fine, but Thomas was a completely different story. Thomas had always been very close to our father since he was young, or at least when I stopped having a murderous grip on Dad. Thomas knew what death was and it scared him, I think. I could tell because Thomas was starting to act weird because he was spending even more time with our dad.

I decided to go looking through Thomas’ backpack, seeing that Thomas had not brought any fliers home from school, and seeing that I was the loving brother that I am, I had to invade his privacy some time or another. Inside were notes from the teacher asking if everything was all right because Thomas wasn’t acting like his usual self in class; he wasn’t joking as much and not smiling as often. This was even stranger seeing that he was the life of the class; always smiling. He was like that around our dad too.

I didn’t know what to do so I told my mom. She told Thomas that everything was okay or something like that. Apparently Thomas was worrying a lot about our dad, and he wasn’t concentrating on what was happening at school as much as he usually did. There was a reason why he normally remembered to call our dad in Atlanta.

It wasn’t just us who were having trouble; our mother was too. It turned out that because my dad had to spend so much time at the hospital, the other workers were thinking that he was sick. Nobody wants to hire a sick person. So my dad was having trouble at work from the co-workers and bosses. My mom had started staying at home after I was born so that way there would be someone there for us. Now with my dad having work problems, she was out looking for a job.

It was Robert who noticed because he liked sitting with our mom. Robert saw her looking through the newspaper for job openings. Robert didn’t understand any of this. All he knew was that our dad was going through surgery and that he would be home soon. He didn’t understand that our dad was dying, although, he seemed to dream of it a lot. Robert did know, though, that our dad was having trouble and that our mom would have to be going to work soon.
*****
My dad came back three weeks after he had left. He was coming home on a Saturday so everyone went to Sea-Tac airport to bring him home. After finding the baggage claim area for the flight, we all anxiously waited (for a long time, too) for our dad to come.

Eventually my dad did come home. He could be seen approaching the baggage claim riding on an escalator. Thomas saw him first and broke into a run to go see him, with Robert behind in hot pursuit. My mom and I just walked.

From a distance my father looked the same as ever. But closer he wasn’t the same. The person who had left was strong and confident. He walked with his back straight and in long strides. Nothing could destroy him. However, the man coming back was the opposite. He seemed weak in a way, defeated. It wasn’t like you could see it at first sight. It was like something surrounding him. Weakness and hope all mixed in one. My dad wasn’t invincible anymore. He was just an ordinary man, an ordinary man who could be defeated. There was no point in listening to the illusion anymore. Everything was different; the world had broken into a million pieces and nothing was ever going to be the same again.
*****
It seemed like everything was going to be better, though. My dad didn’t have a catheter or have needles poked in him anymore. My dad was practically normal. He could eat normal food and spend more time with us, because he could go back to normal working hours instead of spending weekends at work. The only annoying thing was all of the medicines that my dad had to take.

But, of course like everything that seemed to be happening in my life at the time, it only seemed to be better. It was flu and cold season. Because all of the medicines that my dad was taking wouldn’t let his immune system work my brothers and I had to be more careful around him. We tried; we really did; but in a few weeks my dad had managed to get a cold. I blame it on Robert though. Of course now it wasn’t just a cold. If your immune system isn’t helping you, getting a cold requires hospitalization.

My dad was in the hospital for a couple of weeks. We visited him at University of Washington Medical Center almost every night. My dad was put in the floor for Infectious Diseases, which was possibly floor seven, I can’t remember. We would bring our dad some good food and then eat some of the hospital food. Television shows were right; that stuff really doesn’t taste good. There were several occasions like that when my dad got an infection or something like that. After awhile we were familiar with what most of the floors were for and the doctors knew us by sight. But every time my dad went in he would always come out alive.
*****
My dad’s kidney was failing or something of the sort. He would have to go to the hospital for an infusion of some medicine. The medicine was going to help. One of the side effects though, was the possibility of skin cancer. The only thing that made sense was that it probably was a last resort.

The fact that tonight was Thomas’ play wasn’t very good. Thomas was very good at acting. He seemed to be doing better than when our dad was in Atlanta. Since our dad couldn’t go to the play because of the infusion I would have to videotape it. Unfortunately, it was after my dad had left for the hospital that I had realized that the video camera wouldn’t work. Maybe my dad wouldn’t mind just hearing about it.

The play was pretty good. Thomas had come and found us and we were going to go home. In the car we started up yet another conversation. They were like the English teacher’s Socratic Seminars except they were more about philosophy than what was going in a book or an article. Socratic Seminars was a discussion about something involving many people. If you wanted to say something you just had to stand up. Somehow those conversations occurred more and more since my dad got sick. It seemed like whenever everyone, except my dad, was at home we would all end up in the same room and a conversation would start. It would always end with my mom telling us to have hope that our dad would get better. That was what she always said.

That night Thomas was being more active than usual and was calling our dad to tell how well he had done. Of course my dad was a bit mad about the camera, but, like always, we fixed that. On the weekend we tried to do some weird reenactment of the play for our dad’s amusement like we did every weekend since Thomas got picked for the main part.
*****
It was a couple of months after Thomas’s play. I was sitting at the lunch table listening to my friends. One of my friends had apparently gotten into a fight with his parents.

“I wish they were gone or would just leave me alone!” My friend must have said that plenty of times. It was taking a lot of my self-control to keep from screaming at my friend. I wanted to yell at him; tell him that he was lucky to know that his parents were going to be alive; that they would see him graduate high school and college. My friend’s dad probably didn’t always try to be there for all the small things like registering for high school classes and getting into IB. My friend would go through life knowing his dad would always be there. I was forced to sit there waiting for the time when my dad would leave me.

But I knew better than to reprimand my friend for what he says about his parents. This whole ordeal had taught me something. Before, I had been like my friends, completely naïve. They knew nothing about the world. They didn’t know about death and having to sit there watching people they loved be tortured. They were just little kids still, to tell the truth. Because of everything that had happened I had grown up. I wasn’t a silly teenager anymore on the inside. In a way I had aged decades while my friends were barely growing at all.

Tonight I would go with my mom and my brothers to the hospital. My dad had been hospitalized again because his new kidney was failing. My dad was on floor 4SE. The phone number was 1-206-598- something as always. Today was his birthday and it’s probably some sort of sin to not be there for it. The hospital was a very lonely place, especially when there was no one there. It seemed that school was taking forever. I just wanted to go see my dad and be sure that he was okay, that he was still in this world.

I knew that this wouldn’t have a completely happy ending. Things like this never did. All of the ups and downs that had happened still led to the same place. Some day my dad will die and leave us, probably earlier than he should have. I would worry and cry while my father was still alive, watching him become older and suffer even more. And then my father would die. Then I would cry for all the times lost, that had never happened, while being glad that he was no longer suffering and was, hopefully, in a better place. But in the meantime, I would have to make memories to look back on.
*****

There are ways to prevent kidney diseases. This is one disease that’s best stopped before it’s started or at the very beginning.
Early Signs Are:

• Change in urination
• Fatigue
• Skin Rash/ Itching
• Weird taste in mouth/Ammonia breath
• Nausea/Vomiting
• Shortness of Breath
• Cold Feeling
• Dizziness
• Leg/Flank Pain
Some Preventions Steps Are:
• Lead a healthy life
• Exercise
• If you are past growing age a low protein diet
• Those with diabetes should keep a close check on blood sugar
• High blood pressure patients should monitor their blood pressure

Causes that you might want to be aware of are high blood pressure, diabetes, and obesity, as well as too much stress, which leads to high blood pressure.
Please note: If you really like your heart, you might not want to get kidney disease, because it can lead to heart problems as well.

It’s your decision now if you want to do something about this. You now know how life really is with kidney disease or at least having to watch it. Is the risk of getting this disease worth it? Shouldn’t knowing that getting kidney disease might mean that you won’t get to see your grandchildren enough of a reason to work to prevent this? If you enjoy living with your life just hanging on a single thread then you can just ignore this. But if you don’t want that to be you then steps can be taken to take care of yourself.
Websites for information: http://www.lifeoptions.org
http://www.niddk.nih.gov
For more information talk to a doctor.