Giving MS A Place by Debby Myers

Debby Myers brings a special voice to the Window. Her experiences and her writing voice educate and inform as well as--not to be shallow about it--keep us interested. She's a thespian and a circus performer as well as a reluctant voice for Multiple Sclerosis. Welcome her please. Hold your applause till the end, but by all means, let her hear it.

My birthday is this month. From the time I was old enough to remember, it’s been hot outside on my birthday. I used to love it – I could tan, go hang out at the beach, or just enjoy the great outdoors watching my grandkids play. It’s just another perk that I’ve been robbed of by multiple sclerosis. Heat is no longer my friend, especially combined with our Indiana humidity.

I’ve written here before about my MS. It’s been six years now since my diagnosis. You’d think I’d be used to it by now, although I’m not sure I ever will be. It requires me to be in temperatures around 70 degrees as much as possible. Anything more exposes my body, particularly from my ribcage to my toes, to an awakening of prickliness and spasms. Pins and needles in my legs and jolts of uncontrollable muscle jitters in my thighs, along with tightness from my MS hug tugging at my ribcage, begin when the external thermometer climbs over 80.

Lack of tolerance to heat is just one of more than a dozen symptoms in my unpredictable life with this disease. Don’t get me wrong. I know we all suffer from ailments as we age. I’m 59 now. When my six-year-old grandson asked me how old I was going to be on my birthday, and I said 59, he made an awful face. Most days I make that awful face too. If we really are "only as old as we feel," then I must be 159.

A dear friend came to visit me last week. When he saw me, he said he thought I looked good – healthy and happy. I didn’t want to correct him, because I have become an expert at using my acting skills in these situations. I do my best in social interactions to put on my friendly face instead of an awful one. Because MS is one of those invisible conditions, I can get away with that. Despite my appearance, my body is constantly struggling with stability. It’s not to say there aren’t times when I do feel healthier and happier, but not like I used to before February 12, 2016.

I saw my neurologist in May. She told me she’s pleased that the MS is holding stable. I am getting infusions every six months of Ocrevus. FDA approved in 2017, it is the only drug used to treat Primary Progressive MS, so it came just in time for me. When I began taking it, the drug was new, so the only results to base its effectiveness on were trials. It is designed to slow progression of the disease, reduce new lesions that eat away at the myelin on nerve endings that cause new symptoms. For me, it seems to be doing just that. I am grateful.

I made the decision to attend the circus parade this year. It will mean being pushed around in a wheelchair. That is one of the things that wears away at my dignity. That chair is where I’ll be living permanently one day. I don’t even like anyone to see me in it. Yet I can’t miss the parade. My oldest grandgirl is the new drum major for the Maconaquah Marching Braves. She has been playing flute since sixth grade and was part of the group last year when they took the state title. At the parade I will see her for the first time in her hard-earned role. I can’t miss it because of a wheelchair or because of heat.

Often people ask why the wheelchair. Why not a cane or a walker? Well, those can only take me so far. I struggle the most with my legs, particularly my right leg. the signal from the brain that says “lift the front part of your foot” doesn’t make it. My brain says “take a step” but my body only gets part of the instructions. If I try to walk more than a city block, weakness sets in quickly, as does my balance.

Life with MS can be unpredictable and downright odd from day to day, due to the wide variety and severity of symptoms. All of these and more can be frustrating to experience, let alone try to explain to someone. No one sees the pain, the numbness, the tingling, the tinnitus, the eye problems, bowel and bladder problems, weak for a few days, strong for a few days, energy one day, totally weak the next, depression, the frustration.

I try my best to make peace with it, to give it a place. Yet my shelf is not big enough anymore. Sometimes I feel there is just no more room to hold it. Despite all of it, I will continue to fight it. For this is my life, this is my body, and this is my soul. Mine. And now I’m 59.

~*~

Pick up Vex and Valor or Verdicts and Vows at Gallery 15, Anita's Boutique, or from Debby - she'll sign them, too! Book 3 - the climax, Verve and Valor, will be out in the next couple of months, so now is the time to catch up on this amazing trilogy focusing on two families everyone can relate to. 

Also available on Amazon.