Chapter Four

In search of Control

In the following weeks my thoughts were totally dominated by the events of that night. From the time I awoke until I went to bed, I would lie awake half the night, could think of nothing else.

Everything that had happened, I knew, was very important. It raised more questions. How had I worked so long without medicine? Why was this day different than any other? But more exciting was the hint that I could possibly find some answers. Had I been reminded of my pills because I had felt weak? No, I was feeling great until after I realized I had not taken medicine in ten hours. It was fear that had triggered that crisis.

This was no ordinary fear. This fear could kill me!

But how did this day happen anyway? The art class was fun, yes, even exciting. Was that it? Excitement? I had never felt such enthusiasm!

The realization slowly came. The excitement had produced Adrenaline and had raised me up to a level where there was no MG. My enthusiasm had kept me suspended there until fear, anxiety, apprehension slammed me to the ground. Enthusiasm, Excitement, Adrenaline! Fear, Anxiety, Apprehension! They were opposing forces. One was my enemy and the other my friend!

I concentrated on anxiety for awhile. I was fascinated by the power it had exerted over me and wanted to understand. Convinced that the anxiety had come first and had magnified the weakness, I came up with this view of its roll in an MG crisis.

In other words there could be, in the beginning, anxiety that produced weakness or weakness that produced anxiety but once the chain started they fueled one another. Greater anxiety producing greater weakness which in turn produced greater anxiety etc. etc. This view is decidedly different from the view that anxiety is merely a side effect of the disease as all disease will produce more or less anxiety. This anxiety was playing an active roll on the path to CRISIS!

The other view of a crisis was frightening indeed. The immune system, acting entirely on its own, would begin attacking the body, driving it further and further into a state of weakness, until finally the patient would stop breathing and collapse.

That's what would have happened the night of the painting episode had I not been able to take my medicine. But did it have to be that way? If the new view of the role of anxiety was correct I could have simply laid down and relaxed and rid myself of anxiety which would have stopped the downward spiral. I use the word "simply" but I believe it is obvious that controlling anxiety is not simple. Still, this had to be a useful tool.

By understanding this view, and being convinced of its validity, I received an unexpected bonus. In the following months the weakness no longer seemed to generate the fear as it had done before. No longer afraid of crises I began to relax about my condition.

I had effectively neutralized the negative side of MG. Anxiety was still a part of my life but when it did occur, such as in a room full of strangers or people that I wasn't at ease with the resulting MG would be minimal. Further, the MG, having produced no anxiety of its own, would stop there.

A Major Victory!

I realized I no longer had to fear the disease but this was not enough. Once having tasted victory I wanted more. I wanted to improve my condition, work my way to remission, if possible, and the key had to be on the positive side. The painting episode had strongly suggested that Enthusiasm--Excitement--Adrenaline would do the job.

I had always spent time drinking coffee and thinking in the morning. A very good time to think! These periods, then, were perfect and I don't know if I made a decision or just fell into it but slowly they became periods of meditation with the goal of producing anticipation. Anticipation of the coming days events.

Each job that I wanted or had to do would be put through the wringer until something was found that would excite me, something to look forward to. Something like painting.

Something as mundane as taking out the trash posed a special kind of problem. (It's really, really hard to get excited about taking out the trash.) This type of job I simply side stepped. For instance, I had planted some flowers near the trash can---I wonder if they are doing well, even blooming? The anticipation of finding out would carry me through the job and it was done.

As a child I had been the world's greatest day-dreamer and in my fantasies I always won the battle, always came out on top, always was the hero. I tried using this as a tool with the hope of producing excitement and discovered something. The fantasy blocked out all anxiety, all worry.

Is this the reason children day-dream? To block out a world that has a lot of bumps or rough spots. Could be. I had been so busy trying to produce the positive experience that I had neglected the negative.

I began thinking of different adventures and placed myself in them as the main character. Soon I had three or four fantasies running at the same time and I would flit in and out as I pleased. When I tired of them I concentrated on the tasks ahead and found it easier and easier to produce the desired anticipation or excitement.

This, then, was my daily routine. Have two or three cups of coffee. Relax. Day-dream a little and meditate on the day ahead until excitement was generated. I did nothing that I wasn't enthused about doing. Jobs that generated no excitement had to be put off until they did. If I was in the middle of something and I lost interest I switched to something else. A lot of things were half done but I usually managed to complete them at another time.

Soon work became easier. More and more my days were free of Myasthenia Gravis. I was pleased with the progress. I was still taking Mestinon every three hours but it was working better.

Months went by.

I began to experience signs of overdose. Mouth watering--stomach--cramps--diarrhea--chest pains. I lowered the dose from six to five every three hours. No more overdose symptoms and I did just as well on the new dosage. This was the first time that I had ever been able to reduce my medicine. Always, in the past, it had to be increased.

A month or two later I lowered it again to four and then to three.

After getting down to three pills every three hours something began to happen. MG weakness was showing up more often and it was getting more severe. I increased the Mestinon back to four and then to five. A cloud of depression set in. What was happening? All of my victories were melting away. Had it all been one big coincidence? What a cruel joke that would be. Maybe all that meditation was so much hooie! The disease had just gotten better on it's own and now it was getting worse on it's own.

God, I couldn't accept that!

Countless hours were spent going over every scrap of information I had, in an effort to find the flaw. Everything has an explanation and I would find this one.

Slowly the realization that, at some point, I had increased my work day to six and seven hours. The last two or three hours of this period would be filled with MG. Apparently working into that area that produced MG wiped out any long term benefit and actually reversed my progress.

I would have to cut back on the hours I was physically active, but how? My enthusiasm was still high after five hours. The solution was not long in coming. I had noticed that if I had a can of beer or a glass of wine that my enthusiasm diminished. This, then, was the answer I settled on. Meditate and do my work but after four or five hours or at the smallest hint of MG have something to drink and relax. My work day was over. The alcohol effectively mellowed me out, killing my drive and it also helped to block anxiety.

Looking back I'm not sure if this was the best possible solution but for a man who was stumbling and groping for answers it would have to do. It worked and in those days anything that worked, I did!

Since first writing this I have, once again, developed the need to use alcohol in this manner, for this purpose. This time I resisted as I had stopped drinking altogether and didn't really want to start again. Unfortunately I could not find a satisfactory substitute. So far I've succeeded in limiting the drinks to two and this has worked to shut down excessive brain activity in the evening.

At any rate I had to modify my thinking a little. I had thought that all work in the presence of adrenaline was beneficial and would move me toward remission. Now it was: All work, in the presence of Enthusiasm--Adrenaline is beneficial, provided you stop working short of experiencing physical stress with the resulting MG weakness.

In the months that followed I once again experienced overdose and reduced my medicine. First to four and then back to three. I had regained a good deal of control and no longer felt helpless.

I approached the VA for schooling and, after testing, was soon in a full time art school. I really had no choice for, by this time, I was as dependent on art as I was on my pills. Art still was the major source of excitement in my life.