A Tool for the Chronically Ill that Puts Emotion First
I woke up one morning in 2006, put my feet on the floor, and had the horrific realization that one of my legs was not following direction from my brain. The thought of “time to start walking” seemed to be delayed on the left side of my body.
At the time, I was living a Sex in the City existence — residing in Manhattan, running my own business, and going out almost every night on a quest for love. The busy and very fun life of a single, 35-year-old woman. I initially assumed that what I was feeling was a lack of sleep, but it didn’t go away — in fact, it got worse. I became frightened enough to book an appointment with a neurologist, and by the time he called with my MRI results, I couldn’t keep my balance.
The official diagnosis? Multiple sclerosis, or MS, a progressive autoimmune disease for which there is no known cure.
After three days in the hospital I left to go celebrate Christmas with my parents. It was a tough time to be merry. I felt awful and spent a lot of time online reading about blindness, paralysis, loss of bladder control and cognition. All things that could happen in a life with MS. A friend coordinated a lunch for me with a woman who had lived with MS for 30 years, and I expected to be encouraged. Instead, I left upset, as she was bitter about her future, and I wanted to be hopeful. This was the first moment I realized that just because two people share an illness doesn’t necessarily make for a connection.
I’m a video producer by trade, and as I navigated my first few years with MS, I shot a series of short documentaries detailing my emotional journey through the ups and downs of my new life. In 2009, I posted my videos on www.katescounterpane.com, and since then, the site has received over 50,000 unique visitors, many of whom have reached out personally to me to share their own stories. Very often, they are newly diagnosed, and desperate to believe they are going to be okay. By witnessing the moments of fear, sadness and joy in my MS experience, they feel a connection, and they leave our time together with a sense of control, perspective, and hope.
The benefits of storytelling in medicine (sometimes called “narrative care”) are real, but even with 67 million chronically ill individuals searching for health information online, no social network currently exists for patients to connect to each other based on the way they are feeling. The communities that do exist (i.e. Patientslikeme.com), seek personal details, but are more clinical in nature. I’ve created the Moodifier™ to change this.
The Moodifier is an online storytelling tool that guides patients and caregivers to share their stories via their emotional ups and downs using text, photos or video. What emerges are personal details of a user’s own journey through illness in a searchable format and a view of the user’s entire emotional experience in one glance.
For example, here’s a look at Bonnie’s journey. She’s been a caregiver to her husband Jim who has been living with MS for 42 years. Click on the dots to read her story.
These Moodifiers are the foundation to the main site, called Mycounterpane.com. A counterpane is a patchwork quilt created from many different fabrics which, when sewn together, create warmth and beauty as a whole. MyCounterpane.com will be the experiential version of this quilt: an online place that celebrates the virtual, remembers the real, and counters pain with the knowledge of who we are, what we know, and how we feel.
Since being diagnosed seven years ago, I have made 36 points on my Moodifier, some scared, others determined, and many points that are pure happy. I continue to update my journey. Anyone who deals with chronic illness will tell you that the ups and downs may slow down, but they don’t stop. My Moodifier reminds me that when things are good, I’ve got it great. By building this tool for others, I’m aiming to make my life, and the lives of others, even better.
To learn more, or to contribute to the project, please visit my Indiegogo campaign or watch the video below.