Since publishing a post about my experience with CFS on Tuesday, I’ve received hundreds of messages of encouragement, heard from many others who shared their stories of success and struggle as a patient or caregiver, and connected with some remarkable people. I’ve tried to respond to as much as I can. The response has been touching and overwhelming and uplifting and freeing. I’ve cried a dozen times since Tuesday and will cry a dozen more by tomorrow; each tear feels like letting go of a secret that had to be told.
I did something last night that I’ve never done before, though now I wish I had thought to do so. Before going to sleep, I sat on my bed, closed my eyes, and pictured the people who support me, so many of whom I only know through their Twitter or mgoblog avatars, filling a room around me. I was taken aback by the mental image I drew, the size of the crowd, and especially the way I found myself lifted off my feet and carried through waves of friends looking at me with love in their eyes. The last time I daydreamed so vividly I was listening to Giant Steps in a bus with no air conditioning on a 100-degree afternoon. I was 17, on a class trip, an ocean away.
Tuesday’s post was about my struggle, but it goes so far beyond me. As anyone with CFS can attest, it takes a village to get through this, or at least an incredibly tight-knit and tireless support system.
There are so many people I’ve befriended through work or Twitter, many of whom I’m never met face-to-face yet I consider some of my closest confidantes. I started listing them all and realized sometime around the second Craig that I had too many people to thank in one space. Staying connected through social media helped me maintain my sanity(!) through some lonely, difficult times. I got needed distraction, helpful advice, delightful companionship, and a broader view of the world and the people in it than I ever thought imaginable from one’s own room.
I’ve mentioned this before and embarrassed my coworkers at MGoBlog but I cannot say it enough: not only is there nowhere else I’d rather work, I’m not sure there’s anywhere else I could work, certainly not all the way through these last six-plus years. The photographers have adapted when I’ve missed games on little to no notice, making sure we had a suitable setup for each recap. David drove me around the state to high school games for two seasons, and drove even more to film games for me to analyze at home when I wasn’t up to going out.
The other writers have never hesitated to cover for me, whether it’s Seth taking the time-consuming opponent film posts off my hands, Adam writing the special teams UFR early to fill a time slot, or Alex filling in for a hoops recap when I could no longer keep my eyes open. Brian had no idea what he was in for when he hired me, yet he’s never wavered in his support, and instead has gone above and beyond to make sure I have a comfortable present and future.
While I mostly keep my childhood and college friends out of it, because it’s nice to be related to as just another person, I keep a tight circle of people I cannot imagine being without. They provide a sense of normalcy in a life that often lacks it. I’ve had a friend drop everything on a weekday afternoon to drive over to my house when I felt potentially suicidal. It was nothing, he said, but in that moment it was everything. You all know who you are. Please forward this to the sane ones.
My girlfriend of over a year had no idea what she signed up for when we started dating, but she’s not only stayed by my side, she has a genuine curiosity in learning how my illness works and what she can do to help. On Tuesday, she came over just to sit with me while I worked and made a long-overdue grocery run for me. Again, it was a little thing, but for me it was like she’d moved a mountain out of my path.
I mentioned my housemates in Tuesday’s post and how they’ve kept the place livable while I’ve moved from bed to couch to chair and back. I’m much less effusive in person than in my writing, so I don’t thank them enough for what they do. That especially goes for my younger brother, who’s one of my closest friends and so much more generous than even he realizes. He’s cooked for me, picked up medication, driven me around; more importantly, he’s the only person I know with an innate sense of when I need to sit with someone in silence, having some companionship while I deal with whatever it is. He’s gone from my goofy little brother to someone I look to for advice and inspiration.
Finally, there are my parents. As I’ve mentioned, my dad suffered from CFS for nearly three decades, and over the last year he’s finally back to a point where he’s living a normal life. I cannot imagine going through this without him mapping out how to live with an illness so few, including doctors, know much about. As a child, I watched him build a business and support a family while seriously ill, and all while fighting a protracted workman’s compensation battle because the legitimacy of his illness was in question. As an adult, I’ve learned from him how to take every twist and turn of CFS without losing hope, and he’s led the way in finding the doctors who can make me well again.
The significant others of those will serious illnesses so often get overlooked even though their battle is every bit as difficult, in no small part because it’d be so much easier, and so understandable, to walk away. My mom took care of everything in the house, and I mean everything. She shouldered the burden of raising two children while her husband couldn’t even get behind the wheel of the car. She put a home-cooked dinner on the table every night.
It’s not easy to live with someone with CFS; we don’t go out, we’re often hyper-sensitive, we’re definitely not helpful around the house, and there’s usually frustration and depression and even rage bubbling just below the surface. My mom moved heaven and earth to make it work, then tapped into something even deeper to care for two sick adults when twice, after college, CFS forced me back home.
I’m tremendously blessed. I wouldn’t trade this life for anything. If there’s someone with more love in their life than me, they are truly rich.
Several of you have asked what you can do to help. Research and awareness for CFS lags far, far behind other illnesses with a comparable (or even much smaller) number of patients. So many people who deal with it aren’t as fortunate to have the resources at my disposal; believe it or not, I’m healthier than most CFS patients, part of a relatively small number able to work at all. I have access to world-class doctors and a community whose generosity seemingly knows no bounds.
I’d like to test that. Brian has given me the go-ahead to set up this fund for the Solve ME/CFS Initiative. I’m hoping we can raise $5,000, in honor of my parents, to support CFS research and push for a cure. I haven’t told my dad about this; I told my mom it was just in honor of my dad when running the idea by her. I’d love to surprise them.
If you have the time, I’d also appreciate if you watched the documentary that inspired me this week, Unrest. It’s airing on PBS (check your local listings) and is free to stream on PBS.com for the next couple weeks. It’s a remarkable, raw, unfiltered look into the lives of those with CFS and those closest to them, made by a woman with CFS who created the film largely while working from bed.
Thank you all for being a community I’d even consider asking to do this. This has been a powerful and reaffirming couple of days. Let’s keep the good going.