Meet WYSK Kate Milliken. In 2006, at age 35, life was good. The driven, smart, athletic, fun seeking, single-gal-about-town was running her own video production company, mixing and mingling, and taking life by the balls in NYC. One morning, a week before Christmas that year, Kate woke up feeling really tired – like she hadn’t even slept – and caught herself tripping as she walked up the stairs. She chalked it up to exhaustion compliments of her work hard, play hard lifestyle. “I’m fine”, she told herself.
Then her hands started tingling and she was losing her balance. She was not fine and she knew it. Five days later, the monster curve ball hit… Kate was diagnosed with Multiple Sclerosis.
One week into her diagnosis, someone introduced her to another woman who had lived with MS for thirty years. Kate thought talking to her would help, but it didn’t. The woman was bitter and Kate wanted to be hopeful.
Searching for a way to make sense of her new reality – chronic illness, pain, medications, doctors, a crazy range of emotions – Kate decided to make a documentary about her first year with MS. She called it Kate’s Counterpane. In the end, it totaled 50 minutes, but she presented it in a series of multimedia platform video shorts that she posted online. Offering these individual, consecutive segments of her entire story allowed people to watch according to what emotion she was feeling/sharing and what part of her story they wanted to see.
Her ultimate goal was to give other people affected by MS a sense of hope… the same hope Kate was looking for when she was first diagnosed.
She eventually built a dedicated Kate’s Counterpane site, which launched in June 2009 and immediately took off because of the uniqueness of what it offers. Its raw and emotionally honest storytelling gives viewers something real to relate to and something tangible with which to compare their own experiences. Almost four years later, Kate, the now Arizona based mother of two says of her site, “I continue to get 2-3 phone calls a week from people newly diagnosed who are deeply grateful for its presence.”
“I can’t stop thinking about how much this community needs a better way to emotionally connect.”
That kind of reaction made Kate realize that the chronically ill need a way to connect with each other, not only via sharing the daily experience of illness (the clinical), but by sharing the emotions behind the illness (the psychological). She told us, “For the past year, I have had the equivalent of a raspberry seed in my back tooth; I can’t stop thinking about how much this community needs a better way to emotionally connect.”
She was determined to develop a solution. The result, My Counterpane, Kate’s latest online venture to help others confront, cope with and counter the physical, mental and emotional pain of a range of chronic illnesses.
Set to go live this May, Kate designed My Counterpane to be a first-of-its-kind, social network for the chronically ill. It’s an interactive space where anyone with a chronic disease can construct their own multimedia “counterpane” through which to share his or her own story and emotionally connect and engage with others who are dealing with the same ailments and issues.
As Kate explains, “A counterpane is a patchwork quilt created from a variety of fabrics which, when sewn together, creates warmth and beauty as a whole. My Counterpane is the experiential version of this quilt: A community that celebrates the virtual, remembers the real, and ultimately, counters pain with the knowledge of who we are, what we know, and how we feel.”
At the heart of My Counterpane is an innovative tool Kate calls the Moodifier™. It allows patients, caregivers and supporters to connect through their type of illness and by how they feel about it.
Accessible on a desktop or smartphone, the Moodifier™ gives users a way to tell their story via text, photos and videos and to categorize the emotional highs and lows. By accessing the Moodifier™, other users can view someone’s entire emotional journey in one look, making it easier to find someone who might be a positive connection.
The first counterpane on My Counterpane will be focused around MS. As the site gains traction, other diseases will follow, broadening its focus and expanding its user base.
To help raise additional funds to complete the site’s Phase I build, Kate launched an Indiegogo campaign earlier this month. If you want to learn more about helping to make her My Counterpane vision a reality, click here.