Sick is an amazing word. It holds so much meaning. It can contain anything from a scratchy throat to a deadly, inescapably affliction. I have been sick many times in my life. So have you. Chicken pox, summer colds, flu season, 24-hour stomach bug and that darn vomit monster that just seems to be going around–these are things that most of us try on and then shrug off like itchy sweaters our parents made us model for the cameras, if only to prove to Grandma and Grandpa that we really did receive them. We hate them, uncomfortable and ugly as they are, but they are soon enough discarded and forgotten.
For a very long time I viewed illness as something that could be put off until it was convenient, or at least unavoidable. In college my modus operandi was to work nonstop until whatever swine-avian-big bird-H1N1-r2d2-superbug overtook me and I lay immobile in my dorm bed, shaking for two or three days until I could force myself up and about to start the whole thing all over again. (Once a roommate thought I was actually dead because I actually had not moved for 36 hours, but was too frightened to approach and confirm. She called her mother, who was a nurse, and was properly chastened for potentially leaving a dying teenager to, well, die.)
I’m not very good at being taken care of when I’m sick. The first time my now-husband even tried to turn off the lights in my sickroom I insisted I could do it. I could, too. For years I made my own tea, secured my own nightquil, choked down my own advil and held back my own hair. Or I didn’t. That was okay, too. I could clean up the mess when I was feeling better. (I don’t know if you know this, but I’m a little stubborn.) It has taken me years to even feel comfortable asking for popsicles when I have white spots on my burning throat, much less an extra blanket when I’m chilly or a glass of water when I’m tired.
About six or seven months ago my definition of sick changed. Forcibly. It started gradually–I was tired more, my brain worked a little more slowly, sleep seemed to come a little harder–and I did not think very much of it at first because I was very busy at the time, the kind of busy where you look at your calendar and realized you have to go forward a few months before you find a free weekend. I thought I was reasonably a little stressed. I was doing too much. Eventually I’d be able to cut some things out, but I’d tough it out for the present. But it got worse, and not in the normal ways. Normal, menial tasks like putting away dishes or cutting shapes out of construction paper (I’m a children’s librarian) required regular breaks for rest. I got frustrated by simple ideas and concepts halfway through. My normally quick, sharp mind was sluggish and could not keep up with conversations. Forget not being able to multitask–I couldn’t follow along with most books when I tried to read, or listen to the news on the radio. I felt like I was struggling all the time. I realized I was sick. Stubbornly, two months into my decline, I insisted on still hosting Thanksgiving. I stuffed the turkey the way I wanted, I made the gravy, and I had to sit the rest of the time. The centerpieces on the table–simple vases full of cranberries and clementines–took me hours and near-tears to figure out. My ordinary hawkish attention to detail, my perfectionism that resulted in me enjoying days like this so much (no, really) ended up tearing my exhausted self apart.
And then, all at once it got scary. The gradual decline turned into a sudden avalanche into pain so terrible I was crying and unable to sleep. My husband had to help me sit up, stand up, get dressed and undressed. A few times he had to carry me up the stairs when my legs simply gave out. Over the counter meds did nothing at all; I lay as still as I could, whimpering, feeling guilty for keeping Matt up beside me. While I had until this point managed to keep going to work fairly regularly through sheer force of will, I had to cut down my hours to two days a week with a day of rest inbetween. I quit teaching, a side job I loved, altogether. I stopped going to church because I could not handle the energy required on top of the work hours and the doctor’s appointments.
Ah! The doctor’s appointments. This is already getting long, so I’ll talk about those later. Bahahahaha!
Eventually, through many different methods, I slowly sort of improved. I say “sort of” because…well…yeah, I’m not “me” yet. At my worst Matt estimates I was at about 20% brain function, a blithering, breathing corpse who could sort of repeat the things you said back at you. Now I hover between 70-80% of where I was before this all started. Not as sharp, or quick, or aware as I was before. But I can feel shades of me again. I wake up and can feel interested in doing, sometimes. Occasionally I feel up to putting away dishes, or laundry. I actually shifted out my winter clothes for summer ones all by myself, and by my own initiative. I had to rest afterwards for a few hours but I did it. It felt awesome.
That’s the biggest change: the resting. I can’t plan ahead anymore. This new sick is one that runs everything. It’s a bully. I have to make all of my decisions at the last minute: can I go to work? To the grocery store? To your party? To your wedding?
“I want to,” I can say. “I’ll try.”
“We’ll see if I allow it,” the bully snarls.
That sounds overdramatic, but when your body dictates if you can get out of bed in the morning, every morning, it’s hard not to feel separate from it. That’s one thing I’m working on: still being a unit, one with myself. All zen and shit. The other thing I’m working on is being open: with me, with you, with my doctors, with the future. Hence this (very long) post. I’m going to try to keep writing. Maybe you’ll try to keep reading. I’m not going to edit–that would be impossible for me right now. And my writing may come few and far between. But it’s important, I think, for folks with invisible illnesses to be open if they feel comfortable being so. There is so much stigma out there, and I feel responsible to help end it.
My brain is kind of shutting off now (you’ve probably noticed its decline as I’ve gone on), so I’m going to thank you all for reading this and finish up. Thank you. Stay tuned.