two inches of invisible sand

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.

 

 

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