Skip to content

Sweat off my brow

September 14, 2011

Denial, Anger, Bargaining, Depression, Acceptance.  Originally these were the stages of the terminally ill, but now they are applied to much more.  I can through the stages when I lose my job or when my girlfriend breaks up with me.  I’m sure it gets more trivial than that.

I can’t believe the bus didn’t pull over to pick me up.  I am so pissed.  Maybe I can convince the next driver to get there faster.  That’ll never happen.  Oh well, I’ll get there when I get there.

I always applied it to those that are dying and their loved ones.  My father was diagnosed with ALS, a terminal disease, but now things have changed and I have begun to look at how I reacted.  I wrote on here of steadfast loyalty and pledged to learn all I could to ease the end.  I don’t think I ever denied reality, nor was I ever abnormally angry.  I don’t remember bargaining.  I don’t feel depressed.  At least not due to my father.  I think I just accepted the situation and began to figure out what I could do.

Did I even have enough time to move up the levels?

Like I said, my father is no longer dying.  He has Myasthenia Gravis.  It is an auto immune disease that has a few similarities to ALS, especially in location, but its outcomes are quite different. Both involve the nerves and the muscles, but instead of a progressive degradation, he now has recuperation.

The science as I understand it is this.  In order for you muscles to fire, they need orders from the brain.  The brain sends these orders along the nerves.  The nerves meet at synaptic junctions and communicate with each other by releasing a neurotransmitter.  There are many kinds of neurotransmitters but we only need to be aware of one here, which I will get to.

So the neurons, the basic units of the neurological system,  meet up with each other along nerve pathways.  In order to get one to pass enough of its message on to the other, it needs an adequate action potential.  This is basically the strength of the message.  If it is strong enough, the message is passed on, if the next is strong enough it will do the same.  Eventually, this message is passed to a muscle at a place called a neuromuscular junction.

Picture a hand with fingertips outstretched.  The tips of the fingers open and tiny little pods are released.  Inside these pods are the neurotransmitter.  The end of the neuron (fingertips) never actually touch their intended target (the muscle).  So these pods carrying the neurotransmitter go across a small open area called the synapse and reach the other side where the muscle is waiting.

The neurotransmitter is release from these pods and connect with the muscle.  They don’t just connect though.  They fit like a glove.  Receptors on the muscle take in the neurotransmitter perfectly.  If there is enough, and the action potential is strong enough, the muscle will flex and you will save the woman trapped under the overturned mailbox.

This is all normal, except for the mailbox part.  What is wrong with my father is that there is something blocking the receptors from taking in the neurotransmitter (the message).

So the neurotransmitter is called acetylcholine.  It is commonly known to make your muscles fire, but it also can help you calm down by slowing your heart rate.  For this instance, its job is to meet up with the acetylcholine receptor and make a whole other set of parts work to make your muscle fire.  Also, there are a few types of receptors in use here but only one that pertains to MG.  It is called the nicotinic receptor, though I don’t know if smoking will fix the problem.

What is the problem?  What is blocking the receptor from receiving the acetylcholine?  Antibodies.

Specifically, acetylcholine receptor antibodies.  Your immune system produces antibodies to fight disease, there are many different kinds but we are only concerned with one at the moment.  These antibodies can come from the thymus, a specialized organ of the immune system that sits behind your sternum, but there are other places where the antibody can be produces and I don’t know how to find where they come from.

Basically, some of the acetylcholine will get through, but not all of it, and if untreated, it could get progressively worse.  The body’s reaction is fatigue.  The muscles don’t work as well.  The good part is that with rest they recuperate and work again to some degree.

To find out if you have MG there are a few tests.  My dad had two.  One was a blood test to check how much of the antibody was in his system.  Answer: a shitload.  The other was called a single fiber EMG.  Its like an EKG in that they send an artificial electric shock to the nerve to make it release the acetylcholine and make the muscle fire.  Answer:  the muscle fired but small tremors shook the pattern of the action, which is consistent with MG.

OK, not dying.  But what is he.  He is treatable.  The medicine consists of immunosuppressants and other forms of inhibitors.  Some people end up with surgery but this doesn’t seem to be one of those cases.  According to the doctor, he should be back to a relatively normal state in 6 months or so with treatment.

Here are my current stages.

Denial:  How could the doctor’s have gotten the diagnosis wrong?  They were so sure; they repeated their assurances many times.

Anger:  The test for MG was ordered initially, but the doctor felt there was no reason for it because he was so sure.  It has been months of this whole ordeal, and over a month with an ALS diagnosis.  I never felt happy with any of this ordeal.  The doctors would take vacations and pass my dad off to someone else.  He was at three different hospitals, the checkups were irregular.  Documents and test results were hard to come by.  Communication between doctors was much less than ideal, and eventually tests had to be redone because the results of earlier ones were lost or never recorded.  An advocate can only do so much, how can a patient control their treatment unless they are a doctor in this specific area themselves and know the process?

Bargaining:  Thanks Fate, I’m not sure of all that was promised you over the past few months but i’m sure you have a few payments coming your way.  I know I will do a better job of expressing my opinion about symptoms in the future.  I will look at life differently now.

Depression?  The reverse is mania is some cases.  Elation, celebration.  The reality is that we all jumped head first into this.  Raised money to go on an ALS walk.  Worried about where money, insurance, work, and time play into the end of days.  Made decisions about what to do and when to do it.  For my father, it is, what do I do now?  Is it possible to accept death, find out youre not dying, and be sad about it?  I would imagine ambivalence sets in for many. Numbness.  A stupor that sends one wandering for a prior life that may exist in a similar way but couldn’t be exactly the same; perhaps like a middle aged man searching the car lot for a porsche.  Skydiving?

Acceptance: Is it as simple as saying, “that was weird” and moving on with where you were?  Accept that you are human and no longer one of death’s associates.  There is still a life to live.  It’s nice to know where you stand with people.  The friends that came by to see you, the well wishers, the donors, the onlookers, the devotees, the angry sky god epitheters, the passing through, the one last times, the see yas, the same as always, the bequeathers, the reality biters, the tell you what they think of yous, the condolences, the fist pounders, the memory lanes, the stoic silents, the awkward silents, the jump to helps, the put it all downs, the play by players, the scaredy cats, the same old same old, and the shoulders to cry on.  It’s nice to know that there always was an order of importance and not a blob of requirements.  Some things are more important than others and they come out at times like these.  The question is whether you were paying attention.

Maybe I am too young to put my mind’s eye upon my father’s gaze at newfound time.  I can’t know what having lived 60 years already does to the knowledge that there should be at least a few more.  The stages of grief are obviously flawed if I can relate them to burning my toast in the morning, but it is obvious to me that there are building stages as well.  Stages that go up and forward.  Where am I now? Is it all metaphors and representations of the swift reality that swept through and is now gone? ‘You are what you are’ is probably repeated countlessly in the minds of millions as they continue to keep their heads down and live day to day.  This sense of self that doesn’t consciously change, even when reality does, leaving you stuck thinking this is it.  You’re on page 60 and you see pages being torn from the end of the book getting closer and closer to your bunny eared diagnosis limbo, only to find a choose-you-own-adventure.  Maybe stop asking too many questions, quit while you’re ahead and just enjoy the ride.  How many anecdotal cliche phrases are necessary?  The answer to the beginning of this paragraph is not that I am too young to gaze into a crystal ball and see clearly, it is that I couldn’t know at any age.  The decision to take stock of the stock you’ve already taken is common.  The get back to work even more.  The freewheeling cautionless hippy soothsayer that knows it all now and ends up with the girl at the end of the movie may be a tall tale.  The aforementioned stages are not fact and shouldn’t be taken as such, they are one woman with a weird last name’s take on what is only normal when you just call it life and death.

 

first off

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.

The Navy

January 22, 2011

Laugh all you want but it has a lot of benefits.

Yes, I have not been known to do well with authority. Yes, I have a major opposition to much of what the military does and stands for. Yes, I might be a bit old to be considering this. Yes, I could be sent to war.

But if I did 4 years, I would have enough aid to do multiple degrees for free if I wanted. I could try and get a job in the navy that fits into one of the major interests I have, like journalism. I could get in better shape and come out with a self discipline that is attractive to many employers.

Perhaps looking over the website and talking to that recruiter has made me delusional, but I don’t see too much wrong with this.

The main problem I have with many of the future possibilities I have laid out are that jumping into a vocation that involves school will stick me in a shitty economy with a skill that might not be marketable. With military aid, I could have the flexibility to try my hand and a variety of occupations without the hassle and negativity I bring upon myself to start. I wouldn’t have to worry about the costs of something and just do it.

It would be 4 years of my life, and perhaps I would be risking it by joining the navy, but the life risk is not really worrying me, especially when you look at it from a risk assessment standpoint. I am not likely to be killed or maimed if I join the navy, not when you consider the risks of daily life, end of story.

I guess ideology is a big factor, like being surrounded by people with very different realities then mine own. But I would only be 32 or so when I was done and could be debt free and with a degree by 35 or 36.

Perhaps this thought process is a symptom of my desperate mental state. I don’t really know. But I have a respect for life experience, and this would certainly be one.

Farming

January 22, 2011

I love the idea of it. It has so many facets yet they are so simplistic in their reasoning that it is intriguing to me.

I have spent the last year or so learning a bit about what people have done with individual farms. I like the idea of having that as my primary focus, though I am not sure if I could make it sustainable. If I had the land to do it, and had the opportunity, I would definitely try.

Honestly, I don’t know much about it, but I think that I could learn and enjoy myself. Plus, it would be fun to write about my experience with it.

I would like to spend some time WOOFing around europe to get a feel for it before thrusting myself into it, but the whole thing does excite me.

I could focus on sustainable living, write and think about nutritional concepts and live a healthy and productive lifestyle.

Psychology

January 22, 2011

Actual therapist this time.

I am interested in psychology, I take time everyday to read about new studies, and learn about old ones. I like the concepts it teaches. I like how broad in scope in can be. I like how specific I can make it, in relation to types of therapy one can focus on. I like being the person someone goes to for advice and perhaps love the sound of my own voice enough to enjoy giving it. It fits with something I would be comfortable with doing for a long time.

Now, I would need to do some prerequisite work, but unlike the Nursing idea, my lack of a background in any of the material worries me much less. I am much more confident of handling the workload, and can’t see myself getting bored with it.

I think this is a real possibility. Thought the amount of people that study this every year kinda scares me into thinking its not original enough and that when I go out into the world a psychologist there will be one on every corner and more than half will be waiting for the economy to get better and hoping that one day people will have the money to worry about things on an esoteric level instead of how the world is crashing around them and they dont have enough money for the duct tape needed to survive.

Occupational Therapist

January 22, 2011

Same thing as the last post. Safe and secure. Jobs to be had, not too much prerequisites. It can be done.

Speech Therapist

January 22, 2011

This was suggested by my father because of the job possibilities.

I would be able to help people. I could work in a school, hospital, or have a private practice.

I wouldn’t need too much prior work in order to get into a program, maybe some volunteering and a decent GRE score.

i could probably find work right away and be stable as far as money goes.

But, the simplicity somehow scares me. The idea that I could have a job in a community that stays within its confines, helps others and allows me to maybe have a family and stick put scares me, weird I know.

I have these grandiose dreams for myself that often conflict with reality. Perhaps I just need to focus on something safe such as this and get on with things.