How I cope with progressive MS.

The range of symptoms and experiences that are lumped together under the label of multiple sclerosis is as great, I believe, as the number of people who have received the diagnosis. While some people who get it can declare that it "isn't that bad," treat their condition effectively with drugs, and live on in relative normalcy, others have a much different time of it. At the far end of the spectrum are people like me, who are devastated by losses of ability and function and find that our lives have been inconceivably altered. I wish that knowing we are in the minority made me feel better.

From the time of my first symptom, optic neuritis, until I had to take a disability retirement from my job as a postal carrier was just three-and-a-half years. Previously I had walked eight or nine miles a day; by then I could no longer walk more than a few steps, my vision was poor, and my bladder control nearly gone. It has become progressively worse in the 12 years since then.

When the first ophthalmologist suggested that my optic neuritis could be the presenting sign of MS, I was determined and positive that it wouldn't get me. One of my sisters had been diagnosed with MS so I knew what it looked like--and I didn't want any part of it. (Now there are three of us in a family of ten siblings who cope with the progressive form of it.) I had always been healthy and kept a good attitude. Surely I could overcome anything. That's what I was thinking, but I was wrong.

I tried a lot of things to make it better: chiropractic therapy, yoga, bee stings, a macrobiotic diet, acupuncture, heavy doses of antibiotics, and, when it became available, the first disease-modifying therapy. Nothing worked. In fact, when I took the interferon therapy I happened to be in the 5% of people who reacted with the side effect of infection. Mine was unusual, a huge systemic infection that resulted in several extended stays in the hospital, multiple surgeries, and two years time to recover.

I hung onto my optimism through it all. But I finally got the picture. I'm a person disabled by a horrid disease that I'll live with until I die. When the anesthesiologist came to talk with me before a surgery I asked him to put a little something in the IV mix so I wouldn't have to wake up. But that didn't happen. I'm still here.

Because of my nature and personality I slowly shifted my perspective to an attitude of acceptance. Today I acknowledge and deal with the negative aspects of my existence. I have good family, friends, and helpers who feed me, get me into and out of bed with a mechanical lift, and much more.

Voice-recognition software on my computer gives me the ability to communicate by e-mail and letters. With a high-speed Internet connection I can view live Webcams in places from the Trinidad Pier in northern California to Times Square in New York City. I play Scrabble with people or on the computer, and enjoy the beauty of flowers and birds in my backyard.

For many years I've solved cryptograms for fun. Now I am creating some of my own and have a Web site to share them with others at www.jgpuzzles.com.

I liked myself as I was before all this happened and I miss being that person. My life is nothing like what I would have chosen or hoped for myself and I think I have plenty of justifiable reasons to complain. I try to allow myself to complain without guilt. There are some moments when I feel enough contentment that I verge on happiness, and, every day, I do the best I can.

Julia plays Scrabble on her porch in the year-round moderate climate of Northern California.