Photo by Matt Spaulding
Catching Up with the R.E.M. Runner
On My Own, Together Learning to reach out to others for support By Julie Flygare
iagnosed with narcolepsy in my midtwenties, the concept of a “caregiver” scared me deeply. I didn’t want to be a burden to anyone. Like most twentysomethings, independence was deeply important to me. I had recently moved away from home, chosen an ambitious career path, and planned to survive and thrive on my own.
Narcolepsy was clearly not in those grand plans. Nevertheless, when faced with narcolepsy, I was determined to take on the serious medications and life-style changes the best I could on my own. At the time, I equated accepting help with weakness. Relying on someone would’ve meant that I’d given up on myself and let my illness win. My stubborn determination didn’t make me healthy again, but it satisfied my big ego, at least for a while. Five years later, I’ve come a long way. Here’s what I learned:
1 . Support starts within: Oddly, many people are really good at seeing the worst in themselves. I had to learn to muffle my negative self-talk and treat myself like I treat others. When is the last time I told a dear friend, “You’re a terrible person for skipping your workout today”? Never – because that would be ridiculous. I deserve the same compassion, and it must start within. 2. Finding support: Newly diagnosed with narcolepsy, some of the people closest to me were not offering care. Sadly, they didn’t seem to understand or empathize, no matter how hard I tried to explain. The disconnect was disheartening and isolating. With time, I made friends who did “get it” and believed I was amazing for overcoming adversity. I quickly gravitated toward these new friendships.
3. Learning to lean on others: When these new supportive friends offered care, my gut response was still to say, “No! Reject!” But with time, I realized that accepting care did not mean I was weak or disabled. Instead, being honest with my needs and letting people help me was smart and strategic – working with everything I had, my advantages and disadvantages, to create my best life. 4 . Creating a personal Board of Directors: Chronic illness can feel as overwhelming as running a Fortune 500 company. This past year, I created a personal Board of Directors, a.k.a. “Team Julie,” listing eight people who know me from different aspects of my life. We don’t hold formal meetings or conference calls, but these are my goto friends on speed dial when I need advice, assistance or a shoulder to cry on. In my twenties, I didn’t have any one person as my main pillar of support. First, I had to learn to care for myself, and eventually, to accept care from others. “Team Julie” may be an unconventional version of caregiving, but we’ve made it through the darkest of days. And now that I can accept care, I am more restored and better able to be there for my loved ones. With time, I imagine we all lean on each other. As Leonardo da Vinci once said, “An arch consists of two weaknesses, which, leaning on each other, become a strength.” Julie Flygare is a leading narcolepsy spokesperson and the published author of “Wide Awake and Dreaming: A Memoir of Narcolepsy.” Her story has been featured by Marie Claire Magazine, ABC News, NBC News, Psychology Today and the Discovery Channel. www.julieflygare.com 19
Caring Voice Coalition's quarterly magazine - the spring 2013 Caregiving Issue