Back in what seems like another life—before my marriage and the birth of my two children—I was a busy single chick immersed in Manhattan's social scene. It was very Sex and the City: running my own business, getting together with friends, and going out almost every night in the quest for love. In fact, it was such a hectic life style that when I woke up one morning with weakness in my legs and tingling in my hands, I initially figured it was a result of too many long days and late nights.
Going easier on myself didn't relieve the symptoms, however, in fact, they kept getting worse. By the time I became frightened enough to book an appointment with a neurologist, I could barely keep my balance. When he called to tell me my MRI results, he said, “You have multiple sclerosis (MS), and the lesion on your C4 vertebrae could lead to paralysis if we don’t treat it now. Get in a cab and get to the hospital—don't even pack.”
I was 35, single, and suddenly a member of a community I knew very little about: people with chronic illness.
After my release from the hospital, I spent a lot of time online reading about the ways MS progressed and manifested: things like loss of bladder control, vision, cognition, and motor skills. I started seeking out people who had lived with MS for years, and was dismayed to see the way the disease had made some of them angry, bitter, and resigned to a life of pain. I realized that all I wanted, in those first months, was to meet someone with MS who could give me a sense of hope.
And there was another huge reality sinking in: if I'd thought that finding a husband seemed hard before my diagnosis, it was nothing compared to dating with a chronic illness. How (and when) does one tell a prospective partner about an incurable neurological disease?
In the form of a blind date, the heavens opened—I met Tyler, a man who not only embodied the qualities I'd been searching for, but who also had a close family member with an autoimmune disease. He understood, accepted, and embraced all that I was—MS included. Nine months later, we were married.
In the two years between being diagnosed and meeting my wonderful husband, I had thrown my energy into documenting my MS journey in a series of short videos, which I posted on katescounterpane. I was surprised and overjoyed by the feedback they received—65% of 50,000 unique visitors watched all 50 minutes of my films and many contacted me personally after watching my story. It was profoundly moving to hear people tell me that by witnessing my emotional honesty, they were able to garner a sense of hope about their disease.
After getting pregnant on my honeymoon (on purpose!) and giving birth to my son, I began developing the idea of an online community that would harness the power of storytelling in illness. I decided to raise funds through a crowdfunding campaign and build a site for others to record their stories the way I did—using text, photos and by recording video. Our storytelling platform uses great technology, but what’s different is we ask people to give us their story by how they feel. We ask users to pick from a specific list of emotions to precede the part of the story they tell that day and what is coming out of our users is not only emormously powerful, but also easily searchable, so others in a time of need, can find someone to learn from. The site is called mycounterpane (a counterpane is a word for a patchwork quilt and we think this is the experiential version of different experiences coming together to be something beautiful as a whole). Currently, we are in beta and are focused on the MS community, though we are also testing it with mothers of children with autism, and it’s working great.
I am a non-tech CEO starting a tech company. I am a woman with MS who has to be careful with her body. And I am a mother with not one, but two children now. The mission of finding a balance is often overwhelming, and it wouldn’t surprise me if I got sick because of how hard I am working to juggle it all. But today I am not. I think that’s due to pursusing my dream (and it’s risky!) and also being surrounded with love. My MS remains in remission and even in the most stressful moments, I feel enormous gratitude. There was once a very real possibility that I wouldn't have what I have now, and I rarely forget how far I've come.
About the Author
