Chapter Two

You're on your own!

My relief at having a name for what was happening to me was indescribable. There was a reason for my weakness and my recent failures and it had a name.

Myasthenia Gravis? How did I catch this disease? What exactly is it? Nobody seemed to know much about it.

My doctor told me they had a medication that would control MG and that I would be able to lead a perfectly normal life. This good news held up for about two days of taking the medication, but the side effects were so severe that I wondered which was more disabling, the disease or the cure.

The following months were filled with doctors, hospitals, tests, medicine that didn't work, more tests, more doctors, medicine that worked and then didn't and then, finally the verdict that I was "stabilized." At least I could function a little better.

Words like "Incurable," "Rare" and "Crisis" became very important and personal to me, and it was soon clear that the amount of real knowledge about this disease was minuscule. So that was something new to worry about.

The relief of having identified it slowly eroded as I came to realize, more and more, that I was on my own. There would be no magic cure. No doctor was going to solve my problem. This feeling resulted in a sense of isolation that was with me for years. I tried but couldn't shake it. I felt very much alone. True, I was alone with a loving and supportive wife and five great kids, but in this one area I felt a need to communicate, but couldn't. I tried from time to time but was always misunderstood until I felt it best to keep it to myself. The fault was not theirs, I knew. It was mine.

What exactly was I trying to say? Why did I hurt so much inside? Why wouldn't the events at James Connally Air Force Base near Waco Texas, leave me alone, get out of my mind? The Tears! Always the tears and why was it impossible to express any of this?

There was no shortage of questions but very few answers.

Medically retired from the Air Force, we returned to our home town, San Diego. The VA awarded me a 100% disability rating and assigned me to a Dr. Brown who was in charge of the psychiatric dept. Normally MG would fall under neurology but San Diego's VA didn't have a neurologist. Since I still needed someone to write my prescriptions, Dr. Brown was my man.

Compared to the Air Force Hospital where I had been poked in every place that it's feasible to poke a person and stuck in every other place the VA was a very friendly place. No one wanted tests because they admitted that they knew very little about MG and apparently weren't the least bit interested. That was fine with me.

Dr. Brown looked up the medication and wrote my prescriptions. He would ask if I wanted to try something and would get it for me if I did. He knew enough about the medicine to keep me out of trouble and, at the same time, gave me the feeling that I had some control. This seemed very important. We always talked when we met and, although I wanted to, I never managed to talk about James Connally or the pain and tears.

Build a wall--Chink the cracks--and get on with your life!

During one of our talks, Dr. Brown mentioned that he had read about a psychiatrist who had achieved some success with nine or ten MG patients. Unfortunately the doctor had died without writing about his treatment. A Good News-Bad News joke! An interesting piece of information but it just raised more questions. How could a Psychiatrist help someone with MG? Wasn't this a physical disability? The nerve can't transmit the signal to the muscle. That's physical. Well then back to the first question. How could a psychiatrist help someone with MG?

During another of our talks Dr. Brown mentioned an article that said that all MG patients seemed to have very similar personalities. If this were true it would seem feasible that a psychiatrist could play a role in this puzzle. Did ones personality have something to do with why they got MG? Interesting.

I filed all this away along with the new questions. At this time I had no hope of ever making progress toward real understanding.