In a comment on my post earlier this week, Em mentioned that Laura Hillenbrand, the author of Seabiscuit and Unbroken, had spoken publicly about her struggles with Chronic Fatigue Syndrome. I had never heard her “story” before so I looked up her New Yorker essay, along with assorted interviews and articles. So many parts were eerily familiar. We were almost the same age at onset, dropping out of college, being accused of making up our symptoms to avoid going back to school (so puzzling since college was the best thing ever!), and deemed more fitting for a psychiatrist than a physician. Many things from this interview on Beliefnet resonated with my experience, but especially her response to what advice she would give to others with CFS. She said:
It’s such an individual journey. But what I would say is, no matter what happens with this illness, I think it is possible to carve out a dignified and productive life. This illness takes everything away from you, and you have to find completely different ways to define what your life will mean to you. But I think it’s possible to make a good life. I have been happy in the time that I’ve been sick. It requires a real redefinition of everything, but I think it is possible to do.
More than anything, getting sick as a teenager forced me to completely redefine my life. Everything was gone, and I had to put things back together one little piece at a time. But like her, I know it’s possible to “carve out a dignified and productive life.” I’m really not sure how long this new “day job” will be sustainable for me, which is why I’m so grateful to live in a time where I know I can do productive work right from my own bed. Despite the hopelessness that I’ve sometimes felt over the last month, I know I’ve had a good life and that I will continue to, regardless of how my health ebbs and flows.