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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.


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