She asked why I chose MS as a cause for which to raise money. I told her that I have MS, so it seemed a natural decision.
"You don't have multiple sclerosis. I've worked with people who have MS. There's no way you can do what you do and have MS. You need to see a neurologist."
This type of statement has never found it's way to my ear before. it did not find a welcome reception.
Initially, I listened to her discuss her past as a health care provider to those with MS. How debilitated they were - wheelchairs, walkers. I think she said other things as well, but my mind couldn't focus on too much beyond processing my gut reaction of "What did she just say to me?!? How dare she say such a thing to me!" I exercised some of my mental calming strategies that I use when my almost-5 year-old firmly decides to contradict me at a point when I have time to allow said contradiction. I suspect it helped that I could simultaneously watch him in his gymnastics class.
I chose an optimistic approach. Something far more easy to do in the public forum. My response:
"While it's true that I have thus far had a relatively benign course, it's also important to know that MS can affect anything controlled by nerves - which is just about everything. In fact, many many symtpoms remain invisble to others. Much of the frustration a person with MS has - in my opinion - stems directly from that invisibility feature." I began to describe some of my issues that no one can see. Issues that keenly, constantly remind me of the disease's grip on me: my tingling hands ("like holding a powersander for a while - then touching anything"); the sensitivity in them that makes me retract my hand when my wife wants to hold mine; the wrist pain ("nothing like resting your wrists on a belt sander to make you feel comfy!"); the discomfort to direct sun exposure ("like a hot sun on a bad sunburn"); balance issues; that zippy sensation down my back when I look down (Lhermitte's); vision disturbances (double vision with fatigue when looking up, particularly when fatigued - "perfect for riding in the aerobars during any ride over 2hrs"); the headaches resolvoable only by closing one eye or the other or wearing sunglasses with the lense from the right eye removed; the sensation that I just touched my tongue to a 9V battery two minutes ago; the inability to control my right quadriceps fully or maintain core musculature on that same side; the fatigue requiring me to nap every afternoon, regardless of how well I did or didn't sleep the night before. Perhaps the irritation from her initial question remained, as my description became more of a litany. Regardless, I didn't apologize.
None of this, aside from my balance, quadriceps, abdominals, and my eyes seeming to "wander around a little bit", is externally observable. From the outside perspective, I look "normal" and potentially behave "extraordinarily" in my ability to train / race at such a level.
"The best thing I can think of to combat this disease that will cause me to lose my balance, my strength, my endurance, my coordination is to work hard at elevating my balance, my coordination, my strength, my endurance as high as possible. The higher the bar, the further it can fall without losing the ability to simply do those daily things that I need to do without help."
But eventually I'll need that walker, or that wheelchair that she saw her clients need. "Maybe not," she said. "That's kind of negative."
Research would suggest that by age 63, I'll need at least a cane to walk. That's for folks with MS across the board. Men, while getting MS less often, typically progress faster than women. But given that at one point I had hoped to be racing Ironman in my 70's and maybe 80's, needing a cane to walk in my early 60's is somewhat discourageing at best.
Of course, the odds favored need of a wheelchair (at least temporarily) when I had transverse myelitis. I didn't, and I think I owe that in no small part to the idea that I was fit enough to have finished an Ironman the very day I was diagnosed with it. Well, the day before, anyway. Getting up a flight of stairs eventually became a struggle. I don't know that if I couldn't cover 140.2 miles of swimming, biking, and running one day, and barely a flight of stairs not long after wouldn't have meant a walker or a wheelchair had I not pushed myself so much.
"Expect the worst, hope for the best," came my reply to her pessimism comment.
I explain that the most potentially devastating aspect of the disease progression revolves around real estate. Location, location, location. One could have 25 form in the brain noted only on an MRI because no apparent symptoms ever presented. That same person could have one single lesion in the spinal cord and never walk again. Lesions can happen anywhere, and to my knowledge there is no way to predict where the next one will form.
"You seem really positive about how you're dealing with it."
"It's certainly easier in public. I certainly have my moments," I reply.
"Well, I can tell you next time I'm on a long run and suffering, I will think of you and realize I don't have it so bad. If you can keep going, so can I" she says.
I think to myself, And I'll remember that I have it better than many.
While I thought about noting that we all have our issues we're working through, it seemed like a good time to leave off the conversation as my boy came running up to me. He proudly told me of his accomplishments for the day. It was time for me to get back to the really important things in life.
In the end, I think it may have become a somewhat inspirational discussion for both of us - a chance for me to explain MS to those even "in the know" while simultaneously giving me a chance to improve someon's internal sense of motivation for training in a sport I love.
Used to love.
Well, really probably will love again once I get past Ironman Lanzarote. Less than a month to go. Then (finally) I can rest. Or train hard, or do whatever solely because I want to.
Mimosa for me on May 18th, the morning after finishing my 18th Ironman. I'm hopeful that won't require room service, but I'll be prepared to go that route if necessary.
