I made a poor choice a few weeks ago. “I’m so tired and sick, and there’s so much to do,” I told myself, “I’ll just wait until I’m feeling better before I write my next blog entry.” That was two rounds of chemotherapy, one sarcoidosis flare-up, four solid weeks of antibiotics, the holidays, and many days of solo-parenting while Jay travels for work ago. Waiting for the right time to do anything is the perfect solution for staying exactly where you are. I should know because I’ve done it a lot.
I take up writing this evening still exhausted, still sick with the world’s most pernicious sinus infection, and still having trouble typing because my hands are swollen from the sarcoidosis. I am on the third day of a week’s course of daily doses of IV antibiotics. I’ve moved into the guest bedroom in the basement because 9-year old Andrew is sick with yet another form of The Crud, and he’s probably already passed it onto Jay. My doctor told me on Friday that I need to avoid “further exposure” to any other bugs while I’m on these ass-kicking IV antibiotics. Easier said than done when one has a compromised immune system and lives with a walking—and hacking—petri dish. One might be tempted t say, “Oh the hell with this,” and go lick the slides at McDonald’s Play Land—just to get it over with. But instead, one finds herself lurking in her own guest room, washing her hands like Lady Macbeth, and going a little overboard with antibacterial wipe usage—not to mention formal pronoun choices.
It’s the New Year, which in the past has meant ritually pledging to do everything from losing weight to writing a book to making my bed every day to stopping swearing. Not this year. I am too tired, too sick, and too worried about the next acute illness landing on top of the chronic sickness. My enforced quarantine in my own home and my overall siege mentality have helped me appreciate the life I have. I want to live it. It’s so easy to wait for things to get better, for things to go back the way they should be, or the way they used to be. But what if by waiting for better times to roll in, we let the ground we still have wash away?
I am writing tonight, even though I’m not feeling up to writing. I called a friend this evening, even though I didn’t quite want to chat. I am staying in the guest room for another night because I want to beat this infection and not catch another one. I am practicing what I preach—or, at least trying to—and living the life I have.
Recently, I’ve had friends pass along links to new blogs by others living with chronic illness. Reading these has prompted me to think about my writing here and why I do it. In some ways, Chronic Town is a personal story. For the past seven years, I’ve shared the details of my very specific journey. As a new mother, I became ill with a strange-sounding and serious auto-immune disease. I’ve grown up, and I’ve grown into a new life with the unique responsibilities and challenges that parenting and illness brought me. I’ve written vignettes about Andrew in his toddler years, meditations on chronic pain, and tirades at losing so much of myself to sickness. I’ve written about my family, my feelings, my disease, my treatments.
As years passed, and my archives have grown past 275 essays, though, I hope that I’ve transcended the specifics and contributed to a bigger—more universal—story. We all live in a state of siege. There’s always some invisible threat to our plans looming just past our control. We all live with exhaustion, in bodies that don’t always obey our wishes, in lives we didn’t necessarily construct. But we live. There is such joy, such hope, such beauty—even on those days we don’t feel quite up to it, even when we’d rather wait to feel better. I hope all these essays go past a macho (or masochistic) recitation of all the hard-ass things I endure and the implicit claim that in enduring them I am somehow more special.
Because I am not special. Chronic illness doesn’t make me special. Or tough. As I hopefully embark on the next 275 essays and seven more years of writing on this blog, I think it’s important to make this clear. If chronic illness taught me one thing, it is this: we all live in Chronic Town. I don’t mean that we’re all sick, but that we all live on a ledge between life and death, that we all live with the constant possibility that everything might change in the next breath, that we all make do with what we have here and now. This is terrible. This is wonderful. This is what we have.
May this year be healthy and happy for you. I hope 2013 brings you all peace and adventure, new opportunities and stability, and as much love as your hearts can hold (and then a little more). May we all have the courage to live the days we have right now before us. Happy New Year.