Today is World MS Day and those of us with the disease are encouraged to share tips about living with this very strange illness.
But first, a story.
Michelle and I went on vacation a few weeks ago to St. George Island, a tiny sliver of land some 4 miles off the coast of Florida in the Gulf of Mexico. We’ve been going there for nearly 20 years now and always look forward to seeing old faces and old friends.
I have progressive MS, meaning that the effects of the disease are slowly but steadily worsening. In my case, the lesions — or scars — in my brain and along my spine are slowly rendering my right foot and right hand inoperable because the nerve signals aren’t connecting anymore.
I am however still able to ride my bicycle if and only if I have the toe clips I need to keep my right foot on the pedal. The clips cost maybe $15. But they require a type of pedal typically found on better bikes (i.e., not the cheaper, beach cruiser type commonly found at the shops that rent umbrellas and bikes and sell suntan lotion and swimsuits and shot glasses).
Riding a bike is really the last piece of easy/normal mobility I have left (I need a cane to walk now and recently bought a walker). It’s funny how big of a deal it has become to me.
Last year we didn’t bring the clips along, choosing instead to try to fashion something similar out of camo duct tape bought at the Piggly Wiggly in nearby Apalachicola. Newsflash: Not necessarily a good idea.
We also rent a kayak while we are there; last year we saw a ton of dolphin, sea turtles, manta rays, snakes and the like.
When we were at Journeys of St. George Island (our favorite shop) to rent a kayak in 2016 I mentioned to the guy who was writing up our order that I was trying to find a bike resource that rented bikes with “rat trap pedals” for our next vacation.
His name was Justin, one of the owners, and he said to let him know when we came back because he could help me out. This surprised me because Journeys doesn’t rent bikes.
But this year I brought my clips anyway, and we went to Journeys to rent our kayak. And Justin was there. And I reminded him of our conversation from last year.
And then he loaned me his bike for the entire two weeks that we were there.
I rode 70 miles along the trails that follow the Gulf.
My tip for World MS Day?
Don’t be afraid to ask for help. Our bodies produce endorphins and dopamine (mmm) when we help someone else and it makes us feel good. Physically and emotionally.
By asking for help we help someone else feel good and for those with MS and other disabilities, it makes life easier, safer and maybe more importantly, more connected to our community.
If you have MS and can (safely) help someone else, even better.
Happy World MS Day…and I do hope you found this post helpful;-).