FEBRUARY 24, 1997
With multiple sclerosis, everyone's best is different
by Maria Hall
I was reading the feature story "Bothell woman running to extremes" (Jan. 20) with growing interest, especially when it stated that this woman, who was training to participate in the Iditarun, has been suffering from multiple sclerosis for the last 20 years!
The article described the incredibly challenging training this woman with M.S. puts herself through before her events: dragging a tire down the Sammamish Trail; doing 7-mile runs around Lake Union. It was exciting to read about her accomplishments.
Towards the end of the story, the woman is quoted as saying, "People need to understand that if you put your mind to it, you can do anything." This is a statement that struck a nerve. A nerve sensitive enough to motivate me to write and clear up what I firmly believe are some misconceptions about the effects of multiple sclerosis.
I was diagnosed with multiple sclerosis in December 1994. The disease hit me with a bang: slurred speech, extreme weakness and fatigue, numbness, and a severe lack of coordination.
What I and those who know me found hard to believe is that two months prior to this severe attack, I was being dropped off in remote areas by helicopter in Southeast Alaska. Before this type of work as an environmental consultant, I had worked with the U.S. Forest Service conducting wildlife surveys (hiking 35 miles per week) and fighting forest fires in Oregon and at Yellowstone.
During these last two years, I have fought very hard to bring my physical fitness back to "normal." I lift weights four times a week, manage some aerobic exercise, and follow a strict nutrition regimen. I have managed to recoup much of my physical loss, except a major one: endurance. The ongoing joke between my husband and me is that I could probably lift him up over my head but I couldn't walk anywhere with him! I still can't walk more than a quarter-mile without my left side "disappearing" and refusing to support my weight.
I still have hope, though. My endurance is much better than it was two years ago. So I keep at it with the hope that my endurance will only keep improving, although I know it will likely be slow progress.
I consider my attitude towards overcoming the effects of M.S. as very positive. But I can yet only dream about running down the Sammamish Trail, since my legs still will not allow me to run at all. That is why I cringe when I get the impression, as I got from your article, that even some folks suffering from M.S. believe that if you put your mind to it, you can do anything: "Mind over matter." "She could get better if she really wanted to."
The range of M.S. symptoms and their severity is vast and custom-designed for every individual suffering from this disease. There are those like the woman in your article whose M.S. has allowed her to lead an extremely active life. But there are those whose M.S. has left them completely paralyzed and unable to move, despite daily physical therapy and a strong will to improve. Then there are those like me: Never giving up the hope that I will once again be able to hike a wilderness trail.
The effects of multiple sclerosis are very often invisible. There have been countless times when I've gritted my teeth at the mall as I use every ounce of energy I have left to walk in a straight line and not trip, so people won't think I am drunk.
I don't expect everybody to know how M.S. affects its victims. But I definitely felt the need to clear up what I perceive as a few misconceptions concerning M.S. I believe that if you put your mind to it, you may not necessarily be able to do anything, but you can be assured that you've done your best.
And with M.S. everyone's best is different.
Maria Hall is a resident of Woodinville.