This last weekend I visited my neurologist for the first time in seven years. He’s a nice guy—gentle, top in his field—but I stopped seeing him because he had nothing encouraging for me. After my last visit in 2012, I left his office drained and terrified.
At that time it was obvious my MS body was deteriorating. He told me my disease had shifted from the relapsing-remitting stage to secondary progressive, in which there are no more remissions. He performed all the standard neurological tests, proving only the worst. He also mentioned available drug treatments, which did nothing for my spirits. They may slow down progression of the disease, but they also come with side-effects.
“That’s life,” was all he said. On the ride home I cried while Stephen held my hand. The future looked bleak.
He may be a doctor but to me he is no healer.
This time however, things were different. I’ve changed my lifestyle, including my diet, and work out regularly. I thought he’d be pleased. There I was smiling ear to ear, twenty pounds lighter, hypertension gone, not bent over a stick but upright and fearless. I explained all the things I was doing that have reversed some of the most disturbing symptoms of MS, like extreme fatigue, dizziness and weakness.
He was genuinely pleased and surprised at what how well I looked but seemed to think it had nothing to do with what I was telling him. He literally scoffed at me saying that the approach is only worth consideration if it’s substantiated by a double-blind, placebo-controlled trial with a large population, and then published in the New England Journal of Medicine.
We never questioned his authority before, but we did discover how much I could do for my health. That was in 2014 when we found reputable health professionals— MD’s, medical fitness practitioners and others—who all suggest a proactive approach to living with MS. What stands out most is that they educate and motivate.
So for the last five years we’ve been soaking up information about nutrition, exercise and stress-management that made sense. I still see my GP and share with her everything I’m doing. If I’m taking any unhealthy risks, she’ll tell me.
I went from being an MS sufferer to MS warrior. It’s a hard battle but it pays off. I’m still working on my ability to walk better, and I’m encouraged to be stronger and healthier in every other way. I feel more energy, joy, purpose…’
MS is not the mysterious monster I once thought it was. I follow news about the drugs, immunosuppressants, stem cell transplants and devices that science is working on, and I look forward to having safe, reliable, affordable options—but I’m not going to just sit back and wait. These potential cures are just that—potential. I always remember the knee-jerk promise of my very first neurologist: “Don’t worry, there’ll be a cure in ten years. "For sure.”
That was twenty-seven years ago.
One thing I’ve learned as a coach is that change starts with a desire for change. Then, on top of that, you need to commit to a process and get whatever support you need. I have my coach, the online communities of my fellow MS-Warriors and my husband Stephen, who keeps me grounded every day.
I understand the value of science and also the dangers of wishful thinking.
But I also understand the debilitating effects of fear and the absolutely essential ingredient of hope.
For some reason doctors and scientists squirm rather than provide hope or even optimism, let alone prescribe a proactive approach to living with MS.
That’s not just a mistake, it’s a betrayal. Science should treat fear the way it treats other symptoms, and address it in every way conceivable. This would make patients less dependent on the health care system and enlist them as part of the strategy to find a cure for MS, and live with it hopefully in the meantime.