“I’ve never spent a more conscious day in my life.”
–“Hawkeye” Pierce, Season 5, ep. 4 “Out of Sight, Out of Mind” *M*A*S*H*
In this episode, Benjamin “Hawkeye” Pierce is blinded briefly from blowback in the woodstoves used in the *M*A*S*H* 4077th to heat personnel tents. Through various encounters, it’s revealed his companions assume he’s focused on the possible permanent loss of his sight—what would his life be like? Could he still practice medicine? How would this redefine his sense of self? But through a conversation with B.J. Hunnicutt, his closest friend on base, Hawkeye reveals he’s more amazed by what losing something so vital to his self means for his perception. He spent two hours that morning, simply listening to the rain and realized the sound of water splashing in the mud makes the same sound as a steak sizzling on the grill. He’s able to detect an error in surgery with just his nose.
This is what being chronically ill is like. Perhaps not a heightening of the remaining senses due to the loss of one, but a heightened awareness of all the subtleties and complexities that surround us. We rely heavily on our sight. We use it everyday to try and discern the world around us. The same goes for our health. We attach great meaning to out fitness, virility, and physical abilities. Just look at the latest trends in exercise: CrossFit, Tough Mudder, Yoga. They’re all based upon perfecting our physical selves. Even to those who do not spend hours in a studio or gym or in training, sickness and disability are regarded with a perverse kind of reverence. A reverence based in fear of the control they could suddenly exert over our lives.
When that is gone, when walking becomes a chore and the pills you swallow everyday couldn’t fit in both fists, your vision shifts. I can no longer rely on the day to day functionings of my body. One day I can eat anything I want. The next I could eat exactly the same diet but it will leave me curled in pain. Sometimes I can spend the entire afternoon sitting up, but the next day I’ll be lucky if I can roll over in bed.
Lupus makes your best days into distant dreams. The worst days I had before Lupus now look like the brightest and sunniest times in my life. To add to the cliché, my worst days now would be harrowing to my former self. The morning I had to lie down on the bathroom floor because I couldn’t move with the severe abdominal pain I was experiencing from a salmonella infection couldn’t have even entered my imagination prior to being diagnosed.
And yet, yesterday I sat in front of my window for an hour watching the snow fall. One of my favorite parts of the day now is when I open the blinds and look at the sunshine. My favorite feeling in the world is when Rufus comes and curls up against my stomach or behind my knees. I once spent twenty minutes staring at a preying mantis on my window screen before relocating her to where she was safe from the neighbor’s cat. Flannel sheets and a memory foam pillow are enough to make me content. I can read any book I could possibly want.
The days I can move out of bed, or make it somewhere besides a medical appointment are precious. Every interaction I have outside of my family is larger, more significant. My world has shrunk. Everything means more.
At the end of “Out of Sight, Out of Mind” Hawkeye gets his sight back. The natural story arc would suggest that there would be a sense of loss in his gain. That he’d miss the ability of his other four senses.
But he doesn’t.
That’s the reality. If I were to wake up on May 9th, 2013 and get a phone call telling me not to come in to RMH Rheumatology—all my blood work was normal, nothing wrong, I’m the picture of health—I would hang up the phone and go on with my life. I’d graduate with honors, on time, go to work in South Dakota on a reservation, contemplate seminary or graduate school in history. I’d probably be in love, see my friends regularly, and still be volunteering.
I know what you want me to say is that everything happens for a reason. That this adventure with Lupus is just that, an adventure. But it’s not. It’s horrible. It’s terrifying. It’s stressful and degrading. It’s painful and exhausting. I would take a cure in a heartbeat with no second thoughts or regrets.
But there is no cure for Lupus. Not even the glimmer of a hope of one. So this is where I’m stuck. Why not make the best of it?