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, 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 www.katescounterpane.com. I was surprised and overjoyed by the feedback they received – over 50,000 unique visitors, many of whom 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 invented a tool called the Moodifier™ to allow people to chart their emotional journeys through the course of a disease – turning medical storytelling into something anyone could do. Now I’ve been working to bring the Moodifier™ to life on a site called My Counterpane, a social network for the chronically ill to be launched in June.
Here’s an example of a Moodifier™. Bonnie has been a caregiver to her husband since his diagnosis with MS 42 years ago. Click the dots on the graph to read her story: http://www.bonnie-beach.com/moodgraphs/images/b02-concept.html
I’m anticipating a day when patients of all kinds can come together and connect through a network of Moodifiers™ – they are truly stories that never stop and I believe sharing them can help us all to heal.
As for me, I have discovered that much of being a mother is about reveling in the simple actions and discoveries of my children. Sometimes, I need to slow down for the sake of my health. Turns out those moments make me more accessible as a mother, and the bond with my children has strengthened as a result of being present. 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.
To learn more, or to contribute to my latest project, please visit my Indiegogo campaign: http://igg.me/p/321295/x/2190745
About the Author
Kate is a 41-year-old mother of two who lives in Scottsdale, Arizona. When not working to create a healing environment through storytelling, she runs an independent production company that produces high end mini-documentaries for private clients (Milligrace.com).