How a Diagnosis of MS Inspired an Emmy-Nominated Author

On March 17, 1999, a neurologist finally diagnosed me with Multiple Sclerosis. I say “finally” because for over five years, my symptoms had confounded all the other doctors I had seen, and there were many. Some called it idiopathic, which basically means, “something’s wrong but we don’t know what it is.”

(These Words Were Meant for You: Publishing Thoughts for the Minority Writer)

One doctor told me I didn’t get enough sleep. He prescribed a pill, which did nothing except make me groggy. My favorite advice came from a top neurologist in New York City who offered a shrug and a prescription to “go for a run.” Oh, and after his thorough neuro exam he pronounced me a “strong right-handed person.” I’m a lefty.

Like other MS patients, my symptoms were many. They rapidly came and went. Sometimes my vision was blurry. I had debilitating exhaustion, electric “zizzing” in my arms and hands, intermittent stiffness in my legs that would suddenly stop me from walking and an inability to have words reach my tongue. I would stutter or stumble through sentences as I tried to talk.

The last neurologist I saw, looked at all my past MRIs and compared them to the one he ordered. He identified new brain lesions that appeared on my corpus collosum, the largest white matter tract in the brain that connects the two hemispheres. MS is one of the few diseases that include those lesions. A spinal tap confirmed his diagnosis—I had it.

My first reaction was relief. I wasn’t crazy—there was a name for what I was experiencing.

To be fair, MS is a hard diagnosis to make, there isn’t just one test that is definitive. But for me it was especially difficult. I had CNS Lyme and terrible migraines which can cause lesions on the brain. There was also evidence to conclude that I’d probably had a few mini strokes with no outward symptoms. They also cause white spots on the brain. But my new lesions, together with other symptoms offered a picture of a patient with MS.

The doctor said my disease was “relapsing-remitting,” which meant that while flareups would come and go they wouldn’t be permanent. “Progressive MS” worsens over time, leaving most patients with lasting disability. There’s no guarantee that relapsing-remitting won’t turn into progressive disease, but after nearly 24 years, mine hasn’t.

After my initial feeling of relief, I quickly became terrified. Would my husband leave me? We had a great marriage. We were both active and adventurous. How was he going to deal with a healthy young wife being bound to a wheelchair? I was going to be in a wheelchair, wasn’t I? He was angry that I thought so little of him. I remember him saying, “That’s not going to happen. And if you end up in a wheelchair, I’ll push it!” (Great news—I’ve never needed any assisted devices except a cane occasionally.)

What kind of mother would I continue to be to my three small children? Would I be able to take them to soccer practice? Drive them to dance rehearsals, help with their homework? Would they feel embarrassed to have a mother who was sick in bed. As it turned out, sometimes I could take them, sometimes I couldn’t and no, they were never embarrassed.

And what about my career—How would I be able to write or work for Seventeen, where I was editor-in-chief?

I was overwhelmed, anxious, and depressed, and I didn’t like the reactions from my friends. Some were too upset and offered pity, which I didn’t want. Others were too la-di-da. The comment that hurt most came from someone who said, “Be thankful you live in a time where there are disease modifying drugs.” Be thankful? Are you kidding me? I was furious. I quit my job and decided to attack the first item on my bucket list—write a novel. It took me 20 years.

I never thought MS was the reason it took that long to complete Friends with Issues. I thought it was because I doubted myself as a writer. Or that I wasn’t committed enough. I avoided my writing office to take care of my children, husband, two cats, and three dogs. And then there was the fact that I’m a life-long procrastinator.

After I moved from New York to Florida I joined a writer’s group. Those women helped me get over the finish line to complete my book. On most days I forgot I had MS.

But the thing about MS is that it doesn’t forget you. Flareups come suddenly and unexpectedly. One day I feel wonderful, the next I’ll be at a restaurant and can’t communicate my dinner order to a server because my tongue won’t connect with my brain. It’s difficult to be a writer when you can’t find your words—orally—or on the page.

Heat is my enemy, igniting disease activity. Living in South Florida doesn’t help. At the same time, most days I’m symptom-free.

IndieBound | Bookshop | Amazon
[WD uses affiliate links.]

What to do? Without really thinking about it, my character Elizabeth Altman in Friends with Issues, appeared early on in my novel. She is the cog in the wheel that keeps all my other characters together. Smart, creative, and vulnerable, Elizabeth also has MS. Through her, I was able to tell the story of a woman struggling with a profound disease, while trying to return to a big job and confronting her limitations and ambition.

I think Elizabeth allows readers to get a glimpse into a woman who has MS. She isn’t in a wheelchair. She doesn’t need a feeding tube. She’s vibrant, romantic, intelligent and has a loving marriage and family. Elizabeth helped me deal with my own fears.

But unlike Elizabeth there were some things I couldn’t do while writing this book. There were days when indescribable exhaustion would send me to bed. Sometimes I couldn’t type on my computer because my hands were shaking so badly. And there were all the hours I would sit at my desk and be unable to find the simplest words to put on the page. Whether it was brain fog or word retrieval, it was tough.

Writing this book has been a slow, deliberate process. When I wanted to stop and throw out hundreds of pages, a friend—another author—yelled, “Don’t!” and then told me how he completed his. “I. Was. Determined.” Those three words inspired me to finish.

Writing a novel while having MS is hard. Dealing with physical and mental issues is frustrating. But it’s not impossible. We all run our own race. We all have our limitations, mine is a disease. In the end, “I was determined.” And that, more than anything, got me to the final page.

Click to continue.