I tell stories, share experiences, ask existential questions, explore mental and physical processes, and make a lot of jokes all through the filter of living with chronic illness. I was diagnosed with me/CFS at age 9.. I recovered to an extent and managed all the way through college until I was working full time in New Orleans at a gallery (which I loved) and was forced to quit after two years as my health continued to decline. It was awful, and I still remember that sad ride home across the bridge and telling my mom in a quivering voice “I guess I don’t have to go to work tomorrow.” But it had to happen, I was only getting sicker.
I am now mostly housebound but continue to write–a gift I was given that somehow the illness didn’t touch. I continue to seek insight and value even through the dark times because I think we can find meaning through the pain, it just sucks some days and can often feel like you’re out there feeling around in the dark on your own. I try to remind people (by being honest about my own experience) that they aren’t crazy and they’re not alone–something someone with CFS feels a lot. I also talk about my dog Monty, a lot. He’s my best friend and hilarious and goes with me everywhere, which isn’t very many places 🙂 I only recently have begun “advocacy work” when on a particularly sucky day, after being sick for weeks and being tired of feeling helpless, I wrote a change.org campaign petitioning the NIH for higher research funding. So far it has attracted 31,000 signatures, which is awesome! Especially because it’s Me/CFS awareness month. So that’s still in progress right now and lately my writing has been more devoted to that aspect. But mostly I like sitting back and finding the unique in the ordinary, and since I have time to sit around and stare at ceilings all day, and people are just used to “Mary on the couch” I’ve sort of just turned into a piece of furniture, so I have a pretty cool vantage point from which to write. I try to write honest, humorous, creative non fiction stemming from my life which feels a bit on the margins of normalcy, and I try really really hard to avoid whining or self pity. I like to write about things that will resonate with healthy people too, because like they say, we’ve all got our battles. This one just happens to be mine and I’m out to make something valuable come from it: some days I find it and other days I don’t. But I notice when I’m really honest about my pain, so many readers reach out and share their own, or say “I’ve been there”.. And I think having an online community like that, especially for people who are mostly housebound, is great.
I am trying to squeeze every ounce of meaning from this process because even though I hate being sick and was bitter for a long time about all of this, I can also see now that it has changed me in positive ways. It has raised my consciousness and helped me see things I never would have paid attention to were I well. It’s an interesting angle to explore, and I look forward to continue finding the grace and goodness and meaning in a situation that could easily just be.. Well, crappy. 🙂 this is obviously not an easy thing to do, but it’s the only way to go, I think. I try to keep it positive but some days, things are just hard and it sucks and it’s OK to say that, my goal is always to break through to the other side of it so I can keep moving forward. See the bigger picture, find what I missed, type it out loud when I’ve obviously been stupid. I also try to be diligent about what’s happening physically with me, because I think one day in the future, I’ll be healthy, and I’ll have to try very hard to remember all these things my body went through. Many of them I’ll be happy to forget, but for now, I’m just using the situation as creative subject matter, and it’s been an important constant in my life the last five years. What can I say, it’s my baby.