The MELAS Game

Hello, and my apologies for the lack of blogs.

My last post was in April.  As you may remember, I was finishing up my first semester of law school.  Devoting my efforts to study (I hope), I did not post any more social commentary.  … Well, I finished that semester well enough, and started the second semester.

The problem in life is that we can’t focus on one thing at a time.  We have to multi-task, and devote out energy to more than one task.  While I was studying I was also looking for a place to live.  I was burning all my energy, and, to be honest, I may have been not taking in enough energy.

I was going to write this post in the past (once I learned to write again) –  and this post is a struggle, (as it may become clear), but for lack of energy, lack of words, lack of knowing what to say and lacking to want to write this, I have not written.  I was going to name this post “Life Changing;” instead it is called The MELAS Game.  The reason will be clear.

At the end of May, in the second or third week of my second semester, I had a stroke.  More specifically, I had a minor, non-vascular stroke (not a blood clot).  It hit, if I am correct about the area of the brain, my left temporal lobe, which controls language.  I couldn’t read, write, or speak without great effort.  Being stubborn, my first thought was that I was sick, and I made no effort to go to the ER.  It took a couple days of being unable to communicate that I went to the ER with assistance – what convinced me to go was a pounding headache.

As I said, what happened was a stroke.  It took an ER trip and an ambulance ride to San Francisco to tell me that what happened to me seemed random and the solution (if I can call it that ) was baby aspirin, which is a blood thinner.  My stroke was not a vascular stroke, so baby aspirin may not be the answer.  (In fact, use of aspirin and aleve (and perhaps Tylenol – things we all use at some point – may have caused my 10 day hospitalization for an ulcer).

I left the hospital to put my things in storage and return to living with my parents.  But before the 800 mile trip to home my mom decided that I couldn’t swallow and was having trouble.  Whether I could swallow or not was debatable – I thought I could, but after a stroke I was no position to argue.  I returned to the hospital in San Francisco for another four day stay.

I have made it home.  I have had at least one more stroke, which hit both my right hand and my right eye.  If you ever have a incredibly strong headache  and lose your bodily function in your hand or your eye or some other extremity, it is likely you had a stroke.  If so, I will use a phrase I never before believed in – go to your doctor (actually, go to the ER).  I have spent, according to one count, 24 days in the hospital since the end of May; I have as a patient been admitted to the hospital seven times; I have gone from healthy to unhealthy to healthy to near death (I have heard from concerned parties) to healthy, and back and forth again.

It is time to explain why.  A passionate ER doctor who who was not responsible for my care visited me in the hospital after my first stroke.  He surmised correctly, that I have a disease called MELAS.  It is in fact more than a disease: it is a genetic mitochondrial disorder.  It is, as its names implies, a mitochondrial disease/disorder that causes, among other things, random strokes.  It also produces lactic acidosis – the lactic buildup that athletes suffer.

Many people, I know, want to know how I’m doing.  I’d like to inform everyone interested how I am at any particular time, but it’s not that easy.  There is no email list going out to inform people that now I am well or that now I don’t feel well.  There is no energy to create such a list; my ability to write has returned but my day is now dedicated to survival and appointments; my parents dedicate their time to me, and there is no time to inform the world how I am.

Let’s return to MELAS.  There is no known cure that I know of.  The plethora of specialists I have visited look up their information on google, and admit they don’t have an answer.  They refer from one specialist to the next, as if climbing a ladder and somewhere at the top will be the expert of all experts, but his name will never be revealed.  There is no predictability to MELAS … after having a first stroke, I had a second a month later.  Since that second stroke, I seem to have had no stroke in the intervening two months.  There is no literature I know of that says I may have a stroke every month, or every blue moon, or only every couple years.  No one knows.

I know I’m not the only one with MELAS – if I was it wouldn’t have a name.  But the research is minimal and the discussion hard to find.

MELAS has taught me about the (in)efficiency of our health care system.  It has taught ( or reminded) me about our fallibility, and that we are not as physically perfect as we would have ourselves believe  we are.  It has taught me that if you are in the hospital or feeling sick the thing to do is to get up and see that there is a world out that, that some people have  it worse of than you do, and that there is a world to return to.

What does MELAS mean to my life?  It means that the predictability of life is gone.  I had a goal to make it through law school.  For health reasons, I don’t know if I ever will.  It means that I don’t  know when my next sickness will be, and I no longer trust my body to stay healthy for a long period of time.  It means that I returned to live with my parents  (at) until I am well – and there is no knowing when that will be.  It means that other people are in charge of, or spending great effort on, my care.  I was successfully navigating the world and was mostly independent for a short time.

There is no definitive statement about how I am doing.  It changes every day, as it does for so many of us.  At the moment, about ten days after a bleeding ulcer (never have internal bleeding!) , and two months after the last stroke I know of, I feel fine.  The goal is to keep it that way.