Chapter Five

STEVE

In 1964 our oldest son, Steve, came down with Myasthenia Gravis. Steve was nine years old. Was the condition hereditary? No. I was told, we were the first father-son combination to ever get MG. This honor of being the first father-son to have this disease failed to thrill me.

I first noticed the odd expression on Steve's face and a few days later, when he began walking by dragging his toes, I knew what I would have given my life not to know. Our fears were confirmed at Camp Pendleton with a Tinsalon Test.

Steve went into "Crisis" and as a result spent the next six years on a respirator and gastric tube. Nothing that I had learned, to date, helped us improve his condition.

At one point, using Excitement, we did manage to get him walking. After several weeks of slowly increasing the distance each day, he was taking thirty or forty steps. Then disaster struck in the form of Pneumonia! Steve, once again, was flat on his back and the time spent fighting the Pneumonia left his body even more wasted than when we began.

It is difficult to control one's own emotions and I found it impossible to control or influence Steve's. Emotions were the only tools I had to work with at this time.

I've given Steve a lot of thought over the past twenty five years and I'm left with more questions than answers. To go into detail here would only muddy the waters of my own story.

One point that might be worth mentioning is the idea that there might be more than one TYPE of MG. Both types being Myasthenia Gravis, but arrived at from different directions or by different means.

When Steve died, in 1970, we were all devastated. Loosing this battle was, I think, inevitable. Joan and I had taken 12 hour shifts for the past six years and we were both tired beyond description. Steve's younger brothers and sisters also helped when they could have been playing like other kids, and this went a long way in making our job bearable. For the first time in my life I accepted failure. There just was nothing that we could have done. We lacked the knowledge just as the doctors lacked the knowledge. It was not my failure or Joan's failure or the doctors failure. It was a failure of circumstances and a failure of knowledge.

With the burden of Steve's care gone my condition improved. Soon I no longer needed Mestinon on a "every three hour" basis. I still used it on occasion but never more than one or two pills a day. This was a long way from the thirty six plus pills a day I was taking in 1962.

I owed Steve a debt as his care had forced me to work harder than I would have and the end of those six years found me in pretty good shape. Physical conditioning for the MG person is vital and he had given me that gift.

In the dark aftermath of burying our son and brother the family did what it did best. We went camping. I painted a picture, which hangs on our living room wall, and I composed a verse to send to our friends and relatives.

OUR SON DIED!
We bought a grave.
We went to church.
Then people came that
Steve had touched.
WE CAUGHT A GLIMPSE OF GOD.

Most of our friends and relatives understood our feelings but, I guess, we left a few people confused and worried about our mental health. They needn't have worried.

Today I don't think of Steve as being dead as he lives in each member of his family. He's in me and Joan and in Dave, Phil, Linda and Brenda.

We gave him our time and we cared for him when he was sick. Silently, secretly, he gave us a finer gift. One that we weren't aware of at the time. Steve's care forced us out of ourselves into a more generous world. A world where we could see beyond our own self interests. A more precious gift has never been given. We could not save Steve's life but he may very well have saved ours.

Thanks Steve.