On the winter solstice 11 years ago, I was diagnosed with relapsing/remitting multiple sclerosis (RRMS). MS is a degenerative, progressive, incurable disease of the nervous system and brain. The disease attacks the sheathing on nerves, exposing them, much like peeling back the cover on electrical wires. Exposed, these nerves misfire, sending confusing information all over your body. MS can lead to paralysis, mobility issues, blindness, and other frightening ailments.
One morning earlier that inauspicious December, I had noticed numbness in my fingertips. I expected it to go away, attributing it to sleeping on my arm wrong, but by evening the numbness was still there. Over the next week it became apparent something wasnâ€™t right. My vision started changing and I was having trouble with my balance. I was in my 20s, newly married, and we had just purchased a lovely home inÂ San Diego.
Three weeks after the initial symptoms began, we went to the emergency room. The next morning a kind, gentle neurologist gave me the horrifying diagnosis.
When I was discharged, I called my manager and tearfullyÂ shared my personally heartbreaking news. He insisted that I take whatever time off was needed, but I chose to come immediately back to work once a steroid infusion arrested my numbness and blindness. My work was compassionate and attempted to provide accommodations, but my personal life suffered, and I found myself single one year later.
I left sunny San Diego, and joined Amazon for an exciting new advertising role in Seattle. I didnâ€™t tell my new employer about my disability, fearing job security. During the first few years I felt ashamed of my diagnosis, and kept it entirely private,Â not wanting the world to perceive me as broken. I tried six different diseaseÂ modifying treatments (DMTs), but although I wasn’t experiencing any physical issues, my MRI results weren’t looking good. Three years into my employment, my monster (who had remained dormant since the initial onset) reemerged. I awoke one morning paralyzed on 50% of my body, and it took multiple rounds of steroid infusions, a cocktail of DMT’s and months of rehabilitation to recover.
Iâ€™m thankful to say that Amazon took excellent care of me, even retaining my job role during a term of disability absence. In 2016, my insurance paid 100% for a groundbreaking chemotherapy that has permanently paused my disease progression. I have spent the past magical seven years in full remission. There has been no disease progression during this time, and I feel healthy and vibrant as ever,Â which is a blessing. I do experience fatigue, which could be MS, but it could also be parenthood, pandemic life or any other aspect of being. I will always live with my disability, and the PTSD it caused, but it doesnâ€™t stop me from chasing my dreams.
In this decade, I elevated my career, created and captained a bike race team for the MS cure, earned my yoga teacher training certificate, built a large-scale ArtWalk, attended Burning Man six times, and started a beautiful family. I also mentor newly diagnosed people when they enter my life. None of these things seemed remotely possible that winter solstice so long ago…
Iâ€™m currently writing a memoir about my journey called “What A Mess.” The purpose of my story is to provide hope for others facing a devastating diagnosis, and to remind them they still have one beautiful life to live. Please let me know if you’d like to learn more about my book!