Finding Silver Linings Through My Work as a Health Advocate Has Helped Me Live with MS for 38 Years

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As told to Nicole Audrey Spector

A few weeks after college graduation, I was in a bad car accident. I had a concussion and a gaping wound that required 16 stitches. I don’t remember the accident, but I do remember a truly odd sensation that haunted me for a while after — my feet were numb.

I went to our family physician, who checked me out and told me that my feet were numb because the shoes I’d been wearing had been too tight. It sounds silly to me now, but I believed him then. I didn’t want to think anything was wrong with my health. Who does? Particularly not when they’re 21 and in the middle of creating the brilliant life they’d always dreamed of.

Fast-forward five years: I’m walking to the bus station after work and realize my feet feel funny — completely numb, plus I can feel the floor. I look down and see I’m not wearing shoes — nothing at all. My high heels slipped off, and I didn’t even notice. And that wasn’t all. I was weak and tired beyond comprehension. Something was seriously wrong.

I went to see a general neurologist to get a thorough examination. This was 1986, and they didn’t use MRIs back then — only spinal taps and CT scans. I had both those tests to get a diagnosis.

After the test results came back, the doctorcalled me in his officeto tell me that I would need to quit my job and move back in with my parents. Indeed, something was seriously wrong. But what? The doctor didn’t give me a definitive diagnosis.

But he did tell my parents, whom he knew. My mom broke the news that I had multiple sclerosis (MS). I’d never heard of this disease, but immediately understood, based on my mother’s ghost-white face, that it was devastating. I stifled my tears. I had to be strong for my mom.

I was always taught to be brave and listen to what the professionals said. So, I heeded the doctor’s advice without even understanding what was happening to me. I quit the job I loved and moved back in with my parents. It was painful, yes, but I kept a positive outlook. I saw this mysterious diagnosis as a challenge. I would learn everything about this disease that was robbing me of my hard-earned independence.

The local library had mostly outdated publications, so I went to a bookstore and bought all the titles they had regarding MS. I wrote letters to national MS organizations requesting information and was met immediately with generous responses — even personal phone calls.

At the recommendation of my neurologist, I went to a local MS care center. That ended up being the smartest thing I ever did.

When I first visited, a nurse practitioner at the center told me, “Never allow MS to become the sum total of who you are.” These words switched a light on inside me. They inspired me. I knew I had to devote myself to MS advocacy work.

But I had to get through the grueling treatment for my MS flare-up. This was the Dark Ages regarding what was known about the disease. All the doctors offered was to pump me full of steroids, which helped with the overwhelming fatigue but came with other horrible side effects. I blew up in size and was always starving. My doctors forbade exercise, believing physical activity could cause another flare. It’s now well known that this is untrue — but again, the Dark Ages. I followed the doctor’s orders and became a miserable couch potato.

My family and my then-boyfriend (now husband of 35 years) helped get me through that terrible time. They showed me how important it is to have someone by your side. Their love lifted me into a place of wanting to help others. No one should have to go through MS alone.

I dove into ways to be of service. I led an MS support group that allowed me to connect doctors and other MS experts with patients. We discussed big ideas that weren’t much discussed back then — like how complementary medicine, such as acupuncture, can help and the importance of advocacy and inclusion.

Together, we paved a silver lining to living with a difficult disease.

My husband and I decided to try for a successful pregnancy. After consulting with experts (which were few back then), I became pregnant and had a great pregnancy and birthing experience. We now have a wonderful son.

So much has changed since then. The MS landscape looks different. There is awareness around chronic disease, and there are unique medications designed to manage flare-ups. I’ve followed every new development with passion and curiosity, and I’m as dedicated to advocacy work as I ever was. Thanks to social media, I’m global and connect with MS experts and patients worldwide. It’s amazing.

I don’t wish to sugarcoat it. MS is hard, and though I have more effective treatment now, there are still challenges. I still, for example, can’t feel my feet. I have some cognitive dysfunction, some bladder dysfunction and other comorbidities. But I’m also waking up every morning to a new day. With my husband, I’m unraveling new territories within my abilities. And with my walking stick, I’m touching new ground.

MS happens, and yes, it doesn’t go away since a cure is yet to be found. In the meantime, we’re here for each other through our darkest and brightest days. The MS community is a place you can trust. So lean in, because MS will never be the sum total of who we are. We can do hard things together.

Resources
MS Support Group Finder

This educational resource was created with support from Novartis.

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