Two inches of invisible sand
Multiple Sclerosis has been eroding my brain and CNS functions for 24 years now. An MRI reveals that my brain currently has a “Moderate” plaque load. Over time (barring sudden miracles or disasters) this will increase and be re-labeled a “Heavy” plaque load and it will keep that moniker for whatever time I have left.
I take Avonex, a weekly intramuscular injected drug, to slow the development of plaque in my brain, and to extend the amount of time my plaque load keeps the label “Moderate”. For someone with a moderate plaque load, I am remarkably active. I walk 4-5 miles, once a week; I ride my bicycle 50-100 miles a week & I still climb hills on my bike, although quite a bit slower than I used to.
I feel very fortunate that I began my MS odyssey with a body that was strong from 3-4 years of endurance cycling. Right away I understood that if I was only going to have partial control of a muscle, I preferred that it be a big muscle & I have deployed a lot of creativity toward keeping my muscles as strong, limber & useful as I can.
My best estimate is that I control somewhere between 65-70% of the muscle fibers in my legs. Unfortunately, the ones I don’t control don’t just sit there –they involuntarily contract at inopportune times & cause me to do extra work. To explain to an able-bodied person what the increased effort of riding a bicycle with my level of MS malfunction is, the analogy I offer is: It’s like riding in two inches of sand most of the time.
When I look at my Heart Rate Monitor, I can immediately see how hard I am working. When I compare it to the power output I am generating &/or the speed I am moving, it shows me how deep the sand is, at that time. Once it gets to the equivalent of 3” of sand, I stop and stretch, rest and re-group. After a little break, the sand is shallower, perhaps only an inch or so for awhile. But when I am climbing hills (the biggest challenge I have on a bicycle), the sand is usually at least two inches deep.
I often think of this invisible sand, when I am riding and getting passed by other cyclists. This way, they can feel great and get to “pass someone”, and I don’t have to feel lousy about it or begrudge them their relative ease. Those who know of my challenges respect the creative accommodations I use to adapt to my changing struggles. Those who don’t know can simply pass me and have that small burst of satisfaction. Perhaps it brightens their day a little bit, and it costs me nothing.
Leave a Reply