John Taylor, Patient

His Personal Story

My first "attack" was when I was age fourteen, on a September morning while I sat in my Ninth Grade homeroom, not more than a few miles from where I now sit, over thirty years later. I remember that at that time, American Pie was on the radio, Watergate was in the news, and they were still building the World Trade Center. I am not sure what caused my condition, although I did play football that autumn.

I have not had a totally pain-free day in over three decades. But somehow I made a life out of this, and I finished high school, college, was married, had a son, was divorced, and even traveled a little around this world. Talking and chewing can trigger severe episodes of pain, so I am extremely isolated. I usually don't answer the telephone. I can talk for maybe half an hour, but then I am spent. This baffles people, because I must look and appear normal.

In 1992 I even underwent a major surgery to attempt to help correct the problem, but it only made everything much worse. I had to leave my job a few years ago, so I moved back here to my home town. I need dark and quiet during attacks, and it's difficult to find these. Due to my disability, I was allowed to move into senior apartments. It is terribly difficult living alone for all these years, but I need to be alone much of the time.

In spite of the headaches and the nerve pain, I can still do almost anything during pain-free moments, and I do have them. My son, soon to be age 23, now lives in Seattle, but I do have seven nieces and four nephews, most of whom live nearby. I spent many years as a chess teacher and life coach for children, especially where I lived for over twenty-five years.

Anything that has a fixed schedule attached to it can be difficult for me. I have missed weddings and funerals. During severe attacks, I am totally disabled, and my entire focus is and must be on keeping my will to live. And yet I have many abilities and can do almost anything if there is not a schedule attached to it. I know that just my presence, strength, and courage can often help others, and my years of living with physical pain have perhaps made me sensitive to the struggle of others.

I hope I can contribute to a Support Group. Please let me know what I can do to help anyone.

Updated 11-17-05