You wouldn’t think looking around my house that I have much self-respect.
Piles of things that I’m sorting adorn my dining room table. The counters sag under a long row of canisters. Three pans (clean) sit on the stove despite the plethora of cabinets. My closet doors tilt open. Clean clothes have been hanging in the bathroom for two weeks.
But all of this just represents the end of energy each day. I often tell people that I can work or clean house but not in the same day. I can clean house and shop for groceries but only one per weekend. My body drains of the ability to move after six hours. I keep going because I see no other way to live.
I stood in a thrift store browsing blouses a few weeks ago listening to a Stanford doctor ask me if I had been overdoing it lately. He strove to find an explanation for my sudden regression. I flicked through a rack of clothing with one hand, holding my cell phone against my head with the other.
You know, I never slowed down, I never did less than I’ve always done. So, no, I haven’t added anything new. I’ve always done more than my body was capable of doing.
Silence from the other end suggested that the doctor strove to process the concepts that I relayed. I recalled his boss, the virus guru, telling me to avoid increasing my workload as I began to feel better. He explained that a lot of his professional patients overdid it as the drug worked its magic, causing backlash. Or whiplash.
I’m not like that. I’m worse. I make a list of everything that I have to accomplish and I hack away at the list. I work 50 hours per week, slog through chores at least halfway, and organize events. I volunteer, I write letters, I blog, and I try to find the time to socialize. I suffer eyestrain, headaches, worsening spasticity, and a few maladies too unpleasant to list or describe.
Yet I keep going.
So, no, Dr. Bonilla. I’m not feeling worse because I had been lying around for two decades unable to function until your pill coursed through my veins and quelled the inner battle. I did not rise like a Phoenix cured by the elixir and start slaying dragons. I did not forge into the street knocking windmills and run out of steam. I did not trigger a resurgence of the little bug that eats my DNA, sending an influx to override your potion.
I just kept chugging, day in, day out, ticking off boxes, ignoring the bend in my fingers and the wobble in my legs. I felt better for about a year. Then everything flowed back, water finding its lowest level. The sleepless nights returned. The fatigue-at-rest again consumed me. I reached out to you for help in understanding why. I’m wondering, Did I get better because of some profound placebo effect which abated when I was distracted by the affairs of the day?
It doesn’t matter, really. Just as the words used by each new generation of doctors to describe my condition have no impact on how I manage it, whether or not the drug prescribed by the gods at Stanford actually works means nothing. I’ll live my life just the same, day in and day out. I’ll be enough for some tasks and some people. I’ll fall short for other tasks and other people. I’ll be the best I can at everything I can do, and anything far enough down on my list that I don’t reach it will get moved to the top for tomorrow’s quantum of energy.
So double the Valcyte and give me one for the road. One more for glory. Duty calls. I’m exhausted at eight o’clock in the morning, but I’m not complaining. I woke this morning. My feet hit the floor. I stood. I’m way ahead of a lot of folks.
It’s the fourteenth day of the forty-third month of My Year Without Complaining. Life continues.