Giving Thanks for Multiple Sclerosis
by Al Siebert, PhD
THRIVEnet Story of the Month - December, 1996
The sympathy many people feel for a person "afflicted" with a physical condition is a projected fantasy about how they might feel if such a thing were to happen to them. Most people with physical challenges do not dwell on feeling sorry for themselves. They talk about the gifts and blessings they have gained. That is why it is important to ask people about their experience instead of making assumptions. For example, several years ago I was talking with a man about his multiple sclerosis. He told me "It is both the bane and boon of my existence."
Multiple sclerosis is a breakdown in the myelin sheathing that surrounds and protects nerve fibers in the brain and spinal cord. Nerve impulses to and from the brain are interrupted when myelin is damaged. The term "sclerosis" describes patches of scar tissue that form over the damaged myelin. The symptoms of MS may include tingling sensations, numbness, blurred vision, muscle weakness, poor coordination, spells of fatigue, bladder problems and paralysis.
I first connected with Maryam Rahbar when she wrote me from Iran a while back. This fall, as I was planning a vacation trek to Nepal, I coincidentally receivedword from her that she was in Kathmandu. I made arrangements to meet with her.
Maryam is a radiantly happy woman who describes her MS as "a gift." When I talked with her in her apartment in Kathmandu a few weeks ago she told me she was a rebellious little girl. "I am Iranian," she says. "My mother always gave me a hard time because my room was untidy and I was not submissive in school. In fact, my teacher's complaint to her was, 'Maryam asks too many questions!' "
When Maryam was seventeen she left Iran to attend art school in England. From there she went to the United States and from there to Nepal where she met a Tibetan Lama who became her spiritual teacher.
In 1987, Maryam went to a neurology clinic to find out why the periods of weakness in her legs were getting worse and lasting longer. Maryam says "I was actually told point-blank on my first visit to the neruologist 'It's MS.' She then had me stay in the hospital nearly one week to 'do tests.' I was all by myself. I didn't know what MS was, but the way she said it made it sound like a death sentence. She was a monster. She was totally insensitive."
Maryam spent the next month in her apartment in Kathmandu crying, suffering, and feeling sorry for herself. "Then one day," she says, "I decided to get on with life." For many years she had dreamed of being a fashion designer in New York, so she went to New York, got a designing job and lost herself in her work.
After returning to Iran, she broke her leg "My leg was in a cast 45 days," she says. "After that I had no strength in my legs. I had gone home to live with my family, but a disabled person in Iran, like most of the world, is not treated well. I had to choose between spending many hours every day working at strengthening my legs or doing what I enjoyed. I chose to not let my legs control my life." She busied herself with an exhibit, reading and writing.
Maryam flew back to Nepal where she is now continuing her study of Tibetan Buddhism. She paints beautiful pictures, writes poetry reminiscent of Kahlil Gibran, and spends time with friends. "I needed the MS to slow me down," she says. "I treasure every moment of my 'being' in Nepal. It is my Karma, my gift, to live my life this way, to learn the lessons I need to learn."
Maryam is writing a book titled Of Changes. She wants people to know "it's not the end of the world to be or become disabled. There's always room for taking a second look. You gain courage, the will to go on, a determination in a gentle and human way to not give in or give up, until one day you realize you've gained more from MS than MS from you."
Coincidentally to my writing this story, in her November 28th Thanksgiving day column, Ann Landers printed a poem written by a man with multiple sclerosis. He began his poem:
I asked God for strength, that I might achieve.
I was made weak, that I might learn to obey.
I asked for health, that I might do greater things.
I was given infirmity, that I might do better things.
He ends his poem saying "I am among all men, most richly blessed."