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August 16, 2011

It’s odd that my first voluntary foray into medicine has coincided with my first involuntary trip of the same nature. I have spent the last 7 months studying the human body inside and out from top to bottom learning and memorizing as much as I can. The first 4 months were charts, fill in the blank type exercises in memory gymnastics. It wasn’t until this summer that the information took form clinically. My anatomy professor is an ex Egyptian general that teaches in southern california and performs all sorts of cosmetic surgery just across the mexican border, this along with what else your money might afford. As seedy as he is, and it is obvious, he happens to be an excellent teachers. Every tidbit of information relates clinically to a certain disease or procedure. I loved every minute of it because the memorization hoops I had previously jumped through were beginning to change shape into an inflammatory gall bladder, etc. The cholycystical confluence gave me a new respect for what I was studying and I don’t think I have ever been more engaged in school. This has all been like learning a new language, though other than class, I have had very few people to converse with.

Enter my father. For the past while, I have only been back in the country a little under a year, I have seen some deterioration in his health. His hand/wrist would ache and cramp; he had trouble talking. The amount of saliva produced in his mouth would dwindle to almost nothing, leaving him somewhat incomprehensible. For a teacher, this must have been difficult. While I saw less of that because I was out of the house a lot, I was around for meals. During almost every meal, he would choke briefly, then eat more, then choke again. Swallowing became more difficult, like his throat was closing. I had talked to him multiple times about these symptoms and he tried a number of different medications, but nothing seemed to work.

Eventually, he went to a specialist, the performed some tests and saw a growth in his throat. A tumor was the first thought, and as the days went by before a second look, we became increasingly nervous. Thoughts that came to my mind: my mother’s recent bout with breast cancer, my dad smoking until the early 80’s, throat cancer, tracheotomies, raspy mechanical voices, awful anti smoking ads featuring the saddest oldest most addicted california raisin grandmother of all time. When they went back in to biopsy, the found acid. GERD was the likely culprit, the movement from his esophagus to his stomach, normally one direction, was sending acid back up. This is dangerous if untreated. Acid can get in the lungs causing nasty pneumonia, it can burn the esophagus and throat. But it is manageable. No cancerous tumor.

Medication is given, and more days go by. When you can’t eat/swallow/talk well, days become difficult and waiting even worse. He came home, but had a bad relapse where he couldn’t breath. He was given a tracheotomy to help him breath. I was worried about the california raisin, but it was ok. He didn’t need a voice box. Then again, it wasn’t ok. This shouldn’t be happening. Nobody knew what was wrong with him. This wasn’t GERD.
A month in the hospital withers away his weight. Muscles atrophy and he lives with tubes to feed and breathe. The waiting is agonizing. I talk every day with a few classmates about the details in search of someone to bounce ideas off of. I mention muscles, tumors in odd areas, faulty glands emitting faulty hormones, everything I can think of with seven months of school. I input the symptoms often in to google and a myriad of medicinal websites searching for a catch all that I hope is manageable.

The Doctors change. They leave on vacation. They are here, there, everywhere. Every time I stop by it is someone different explaining nothing. Everybody needs an advocate in a hospital and we are lucky to have 2 big ones. David and Karen worked our hospital and others from the top down making sure things were running smoothly, and at times, running at all. Through their help we saw a specialist at UCLA.

More quickly than any of us could have, and assuring themselves after a few tests, they told us that my dad had ALS.

I know sports well, and I know the story of Lou Gehrig, the luckiest man on the face of the earth. I know a bit about how his life ended. I know he played for the yankees. I know Cal Ripkin broke his consecutive games streak. I know there were probably a number of lucky things about his life. Now I know that ALS is not one of them.

It stands for Amyotrophic Lateral Sclerosis. Basically, the motor nerves in your brain control your voluntary movement. You have upper motor nerves and and lower motor nerves. The upper motor nerves control your extremities, this deteriorates and becomes clinical als. My father’s version, most likely, involves the lower portion, and is named Progressive Bulbar Palsy, a form of ALS.

Progressive you know. Bulbar refers to the medulla oblongata, a part of your brain stem that controls many important functional centers, like respiration and cardiac, certain reflexes etc. The nerves associated with this area control certain muscles like those found in the pharynx, larynx, and tongue. Palsy is the paralysis of a body part and is associated with involuntary movement like shaking.

So, to complete the lesson from someone that might have gotten parts of this wrong and doesn’t feel like checking; the muscles associated with the parts I discussed initially, where my father had trouble swallowing, talking, breathing, are malfunctioning due to deterioration of the nerves that supply them with the trigger that sets them off.

The main difference between clinical ALS and progressive bulbar palsy is where it starts. The end is often similar.

Before I go on, I think its important to state that I am not writing this as merely a state of affairs. I don’t really know what this is. I know explaining it on here solidifies the situation in a way. To add, I don’t do much these days other than school and home so its a way to yell out the window without waking the neighbors. I have a few people to talk to and am not really looking for condolences. I guess the best thing would be to know if I make a wrong choice or if I handle something badly. Care-giving, in a way is what I am studying. I want to know all about what to do from here on out because its something a good son does and for the perplexingly normal curiosity that was already there.
I haven’t cried and I don’t think I have any plans to right now. To me, the best way to help is to know all about everything and make things easier on my mother and father. To learn about therapy, disease progression, insurance, social security, life insurance, transportation, recreation, capabilities, relaxation, experts, where to go, who to call, what to read, where to get it, nutrition, respiration, tricks of the trade, nomenclature, clinical studies, inspiring stories, distraction, organization, technology, speech pathology, history, pillows, braces, weights, walks, drives, golf, piano, songbooks, letters, announcements, appointments, drop ins, drop bys, memories, stagnation, inflammation, causation, anatomy, physiology, military disability, medical leave, benefits, faults, liabilities, pensions, allowances, pharmacology, tubes, love, wisdom, and time. If I can’t learn all that on my own then somebody will have to teach me.

I don’t know what I would have done 5 years ago, just before I left the country. I imagine part of me would have shut down. I came back a different person. More appreciative. I don’t need this to tell me I’m lucky. This big red circle around the respect for time I so recently acquired. I don’t need this to tell me about my family. I’d been gone a while and know what its like to be separated from them. I’m going to understand all of this including what I don’t.

I will understand how this disease progresses towards a cocoon, where the brain is trapped alive inside a lifeless body. I will understand how all the doctors can do is try to prolong quality of life before the inevitable. But I will only try to understand how one discusses all this, deals with this, tells people this, tells one’s self this. I don’t know if I will understand that, but there will not be a big growth spurt where hope sticks out his head. That’s something to get used to.

Appreciation is what I will try to have. Being here and not abroad. Being old enough to hear tales and be told the truth. I love history and memory and its fascinating how much of it is false, almost like it is a living being, transforming to its surroundings and putting on its face for company. I have entire childhood memories that my parents have politely informed me never happened when I bring them up. Maybe I have an active imagination.
This is a creeping progression of reality settling under my skin. I feel it there and on the faces of others. The line of loved ones in and out of our house. I also see memory playing its tricks, telling us about the wonders of coping mechanisms and the myriad of distractions at our disposal. I will use a few of them if they pique my interest, but I am going to understand as much of this as I can. I will not try to fill up every minute of the day, the week, the month, the year, maybe more. I will stop to think and make sure I know why and why not.

7 Comments leave one →
  1. Max Ember permalink
    August 16, 2011 7:20 am

    Please call me.
    I am here for you.


  2. odouglas permalink
    August 16, 2011 4:33 pm

    Hi Alex:

    It’s a gift to be that present for your dad.

    Doug Hill

  3. Shelley Carl permalink
    August 18, 2011 8:38 am

    There is not much we can say that you have not already expressed.
    We want to be there for your father, your mother, your sister and of course, you.
    Love, Shelley and Tom

  4. Lorie permalink
    August 18, 2011 5:36 pm

    I love you. I am more into the “fuck the neighbors” state of mind.

  5. Mary permalink
    August 19, 2011 8:51 pm

    Alex, I wish with all my heart that I could be there with you right now, miss you xx

  6. josh pancer permalink
    September 1, 2011 7:04 pm

    Hey alex. Your parents are lucky to have you. I’d love to hang out when I visit LA at the end of september.


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