What No One Owns But You

by Phyllis Dunham

My hands are a pair of tricksters. They hide my secret —that I have rheumatoid arthritis—but they exact a price. They insist on trying to reveal me as a weirdo. I must constantly flex my fingers and hands to keep them from stiffening. As I work my knuckles, they pop audibly, sometimes causing people to look at me as though I’ve belched out loud without excusing myself. I usually don’t know I’m doing it unless someone, sometimes a stranger, places a hand over my hands to stop me. They think, I suppose, that my hand-flexing is a nervous tic over which I’ve lost control.

My hands hurt. My hands hurt all day every day, but mostly I block out the pain. Like the finger-flexing calisthenics I perform every few minutes, the pain has become white noise, mere traffic sounds in the background, something on which I cannot afford to focus. I compensate as we all do. We counterweigh. We cope.

Rheumatoid arthritis isn’t normal joint deterioration due to age. That’s osteoarthritis, and it, too, is painful. RA is, instead, an autoimmune disease wherein the body attacks healthy joint tissues as if they were a disease. RA can also attack healthy organs. I once spent a week in the hospital because RA had surrounded my otherwise healthy heart with fluid and had partially collapsed one of my lungs. RA doesn’t play, and neither do the insurance companies who are reluctant to keep sufferers from receiving the expensive medications that often alleviate what can be life-threatening symptoms.

My friend Amy, a young mother who was diagnosed with RA several years ago, occasionally PMs me about our mutual affliction. She asked me once if I ever get angry about having RA.

“Only when some bro thoroughly trained in the extra-firm handshake gets hold of me,” I typed. “One day I may just kick a dude in the balls without thinking. I fear the bro-shake.”

 “Yeah,” she wrote. “I just tell people I don’t shake hands anymore.”

Perhaps I should do as Amy does. Perhaps I should tell people I can’t shake hands, but, then always, my fear of the pain is outweighed by my fear of being thought too strange.

There are so many things my hands can’t do as well as they once did. I can’t knock on doors with my knuckles, so I beat on doors with the side of my fist, the soft part that doesn’t always elicit a loud enough sound. On days when the pain is particularly bad, I simulate a knock with the toe of my shoe or the notebook I carry in my handbag. I avoid talking to people on the phone because holding a phone can be agonizing, and some people have a low tolerance for the speaker. I cut conversations short. “Sorry, gotta run. I need to walk the dog.” I say, or, “My dinner just dinged.” I read with my book open on the table before me or on a cushion on my lap. I often place a closed book across the top edge of the book I’m reading to hold the pages down so I don’t have to. I hand jars to my friends and keep talking so they don’t notice. If we’re deep in conversation, they’ll often open a jar and hand it back to me on auto-pilot without my having to ask a favor or explain. I don’t let them see me struggle with the blue rubber Ronco Cap Snaffler I’ve kept in the kitchen drawer for years.

As a once-productive DIY type, I hate that my hands restrict me so. Time was when I could move into a new place on Friday and have the walls painted my preferred sunny colors and my art neatly hung by Sunday afternoon. I have lived in my current apartment for two years, and the north and west walls of the living room are still the landlord’s dismal gray. When I paint them, I’ll risk being in debilitating pain for days. The potting soil and containers for my dreamed-of backyard herb garden sit just outside my back door as they have for the last six months. I rarely use my beloved cordless drill since I dropped it on my foot twice in the same morning trying to install a curtain rod. My grip is shot.

My “schedule” is volatile, depending on the whims of my disease. Plans drift in current and cannot be fixed to dates and times certain. “Sorry I can’t make it tonight. Perhaps another time. So much work to do.” I lie. What strength I can muster must be reserved for earning a living, and social life is the first casualty in the triage of my capacity.

Painkillers aren’t an option. Opiates nauseate me for hours and constipate me for days. Enduring the pain is more practical than vomiting and being blocked up—a state that makes productivity impossible rather than merely difficult. Doctors always offer Vicodin or Tramadol, but I refuse them. The last time I tried Tramadol, I retched and cramped an entire lost day of work. I now bid my hands to write lies for me. When I fill out paperwork at a doctor’s office, I pen the word “codeine” in the blank for allergies. It saves on time and explanations.

Some years ago, before I became ill, I took part in a group workshop in which the facilitator guided the participants in an empathic visualization exercise. She directed us to close our eyes and imagine losing various body parts or functions, to envisage each potential loss and see what came up for us. She guided us to imagine losing our hair, then our eyes, then noses, etc., one sense of loss at a time, all the way down our bodies to our fingertips and toes. Because music is such an important part of my life, I assumed at the outset that the loss of hearing would be the worst for me to contemplate, but that’s not what happened. By far the most terrifying segments were considering the losses of my speech and my hands. “That makes sense,” the facilitator said to me as we discussed our experiences afterward, “You’re a communicator and a writer.”

I began to think differently afterward. I became more empathetic. When I see a veteran or some other who’s lost a body part or ability, I think about that person’s loss and its meaning specific to him. Is he a runner? A painter? Is she a swimmer? A pianist? How do they compensate? How do they cope?

I think, too, of the afflictions that are not visible, the ones that echo unexpectedly: the rape survivor rendered incapacitated by the scent of a certain aftershave as she steps into an elevator, the mother whose child has died and who makes a wrong turn into the toy aisle at Walgreen’s, the recovering alcoholic who finds himself holding a celebratory flask that his buddy passes him when their team scores. Unseen afflictions can leave us becalmed in the fiercest of tempests or silently howling in the midst of others’ laughter.

We carry these things always, seen or unseen, but seldom shared unless the nature of our afflictions force us to do so or simply cannot be denied. We grind ourselves up in the maddening machinations of trying to show our employers that we are healthy enough to work while proving to those who can help us that we are sick enough to receive proper treatment.

My RA is mostly a secret to the world. Surprisingly, considering how long I’ve been sick with this disease, my hands are not gnarled, and whenever I must change doctors because I move or they move or they retire, the new doctor examines my hands and instantly concludes that I have been misdiagnosed. The new doctor, no doubt under considerable pressure from my insurance company, pulls me off my prescription medications, the ones that keep the worst of the symptoms at bay. The result is always the same. Within weeks, joints throughout my body seize up, knots form on my knuckles and wrists, I need an extra half hour to uncurl from my bed in the morning, and the outrageous, almost unbearable pain—the kind that refuses to be ignored—invades. I become debilitated. My livelihood is at risk. After several weeks or months of this, the new doctor orders more rounds of blood tests. Then the numbers arrive from the lab—conclusive, undeniable, RA factors through the roof in all categories.

A Cuban American with a gentle manner and a lilting accent, the newest new doctor who put me through another hellish hiatus before restoring my medications, seemed genuinely apologetic. He placed a folded sheet of paper along with the stack of renewed prescriptions into my hand. As I unfolded the page, he said, “Those are your test results, and you need to keep a copy of them with you. Your hands lie about your condition.”

Call me lucky. I’m employed. My employer provides health coverage. And there’s a piece of paper, the results of a scientific test that substantiates my ownership of a particular invisible affliction. Unlike so many, I can carry my proof in my handbag.