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Junk Genes: Getting Diagnosed with MS at 55
The story arc of MS in my life
I pen these words from Room 604, Tower 6 West of Providence St Vincent Medical Center, on the final day of a five-day sojourn. I am receiving potent doses of steroids aimed at halting the active demyelination of my spinal cord and brain. Although a series of diagnostic tests are still in progress, I have a strong inkling that the eventual diagnosis will be Multiple Sclerosis (MS)—a shadow that has trailed me all my life.
A Pioneering Birth
My mother, Nedine Davis, received her MS diagnosis at a young age. In the 1950s, when MS was considered a death sentence, she initially refused to marry my father, Robert Davis. However, his persistence and loving commitment—famously stating, "Then I'll be there to push you"—convinced her otherwise. My elder brother, Kevin, was born in 1961, and the pregnancy miraculously put her disease into remission for several years. It was seven years later, with the disease resurfacing, that she made the decision to have me, hoping for another reprieve. I was born in 1968 and have no recollections of her ever walking.
The Responsible Offspring
The '70s were not a favorable era for those with mobility issues; the Americans with Disabilities Act (ADA) was yet to be enacted. My family faced the all-consuming challenges of caring for a parent with MS, including periods where my mother was hospitalized due to seizures and altered mental states due to medication. When my brother joined the military, I took up the mantle of caregiver, a role that I embraced as part of my identity.
When I was 22, my mother passed away following a seizure, and the stress of the ordeal also hospitalized my father. This loss sent me on a journey across the Pacific Northwest. During this time, I became fiercely independent, vowing never to be a burden on anyone, given the high likelihood of inheriting MS. This resolve led me to avoid marriage and parenthood.
A Purposeful Pivot
As I entered my 40s without any MS symptoms, it dawned on me that my previous life decisions might have been overly cautious. I decided to redraw my life plan, aspiring for a family of my own. Remarkably, I met Heather and her two children, Sahalee and Tarn, who perfectly fit the picture of the family I had envisioned. We married eight years later, marking it as the best decision of my life.
The Inevitable Reckoning
Now, at 55, MS has made its grand entrance, serving as the final chapter in my life's story. Thanks to advancements in medicine, MS has moved from being a death sentence to a manageable yet incurable condition, similar to cancer and HIV/AIDS. With optimism, I am adapting my lifestyle to meet these new challenges head-on, including innovative projects like developing a sensor-laden exoskeleton to extend my mobility.
An Optimistic Outlook
As I prepare for my upcoming specialist consultations and likely diagnosis, I feel grateful for the circumstances that surround me. My resilient family, well-equipped to deal with health crises, is my rock. While MS is undoubtedly an unwelcome guest, I am buoyed by the belief that I am in the best possible situation to face this long-expected specter.
I am heading home today, not yet officially diagnosed but confident of what lies ahead. When I saw the term "demyelinating" on my MRI results, my first thought was, "Once again, I was right." But being right isn't the focus; it's about being prepared and hopeful for whatever comes next.