How a Multiple Sclerosis Diagnosis Changed My Life for the Better
Of the more than 2.3 million people worldwide who are diagnosed with multiple sclerosis, I’m only one story.
I’m a wife, mother, daughter, daughter-in-law, sister, friend and woman living with an incurable and unpredictable disease. And even though I’m only one person, my story can add great value by educating others about what it’s like to live with an autoimmune disease. One story can make a difference.
My story begins in 1981.
After my senior year of college, I drove to Vermont with my two best friends. Their family owned a home in a wooded area outside of Bennington. After I arrived, it began to snow heavily; we remained undaunted by the weather and hopped into their car to go into town. As we crossed a narrow bridge, I was later told a car crashed head-on into us. My only memory was before the crash when I heard my friend shout, “Shit.” When I opened my eyes I was in the midst of being lifted out of the car onto a stretcher. A plastic surgeon at the local hospital sewed my forehead with 16 stitches. I now have my very own scarlet letter.
After I was released, I noticed that I couldn’t feel my feet.
After returning home to New Jersey, my parents admitted me to our local hospital where our family doctor administered a battery of tests. I told him my feet were numb. His response?
“Your shoes are too tight.”
Fast forward to 1986. While rushing through The Port Authority Bus Terminal in Manhattan, clickety-clacking my way toward the gate in two-inch heels, I suddenly walked wobbly. When I looked down I noticed one of my shoes had fallen off. After turning around to locate it, I spotted it on the floor a few feet behind me.
My shoe had slipped off, and I hadn’t felt a thing. Something was terribly wrong.
A CT scan, spinal tap and MRI later, my neurologist informed me I had multiple sclerosis. Multiple what?
I gave up my apartment and my job and moved back home. The difficulty of walking, the numbness in my right hand and the overwhelming fatigue combined with the shock of this new diagnosis threw me for a loop. It hit my parents even harder. Now that I’m a parent, I can understand why.
My family surrounded me with love and support. My boyfriend ran past my mother and hugged me close while whispering, “Everything will be all right.”
I married that boy.
I was diagnosed in the Dark Ages of MS. There were no approved medications, no internet to turn to Google- reliable information or find others to help ease the incredible loneliness I felt with my new scary diagnosis.
Not many doctors discussed complementary medicine, and they never looked at what’s now termed the “whole” person.
Mentioning the word yoga to my first neurologist gave him a good chuckle.
My new journey had begun, and I realized I had two choices: I could either listen to my doctor’s prescription for total rest for the remainder of my life, or I could live a positive life within the abilities I had left.
I chose the latter.
I began by devouring books about MS, attending support groups, calling MS organizations for information and scheduling sessions with a physical therapist to learn how to safely walk despite the numbness I continue to live with today.
Although I live with the “best” type of MS (“relapsing-remitting” with flare-ups followed by partial or complete recovery) I’d be lying if I said it’s been easy because MS changed my life in many ways. It’s sometimes called an invisible illness, and for me this has mostly been true. I’ve had to leave parties early, cancel plans or not go out at all.
The repercussions of having an invisible illness is that at times I’ve been accused of being lazy or ill mannered.
There were times when I had flare-ups and scheduled nursing visits at our home to hook me up to intravenous steroids during the hours my son was in school. Or the time I forced my husband and son to leave me behind for a vacation in Florida with our extended family. Or the time I fell flat on my face in the middle of a restaurant and people laughed at “the yuppie drunk.”
But into each life a little rain must fall, and this is my shower.
I live with the unpredictability of a disease with no cure. So we built a home with raised countertops and grab bars in every bathroom. I nap daily because of MS fatigue, wear flat shoes and sneakers for better balance and mobility, and meditate and practice yoga to reduce stress and keep my muscles stretched.
At one point, a colleague questioned my cognitive functioning. (Some people with MS experience cognitive dysfunction.) She was ignorant, and I became angry. But my anger led to an “aha!” moment of clarity, and it was at this crossroad that I began to write, while also advocating for people with disabilities. And so began my next venture — fulfilling a lifelong passion of paying it forward to others.
So, no, I’m not resting. I’m living a full life within the abilities I have. Having multiple sclerosis is not within my power, but what is within my power is refusing to let MS gain the upper hand.
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