This morning I was reading a long and fascinating article in the New York Times, How Psychedelic Drugs Can Help Patients Face Death, by Lauren Slater. As I read, I began to compare the fear that patients with terminal illnesses have of their impending deaths and how I feel these days about my rheumatoid arthritis. No, rheuma pain doesn’t begin to measure up to actually dying. I don’t mean to trivialize the concept. But as I read, my recent, distinct dis-ease with my own RA joint and bursitis pain suddenly clarified: I fear the return of the much worse, frequently disabling and mind-jarring pain I lived with during the first 10 years following my diagnosis. It tints my every waking moment with niggling worry.
Fear. Dictionary.com defines it as “a distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined …” That’s clear enough. I’m experiencing that “distressing emotion” far more often than seems healthy.
Really, there’s nothing wrong with being afraid. Without fear, humankind wouldn’t have survived and I sure wouldn’t be around to write this today. It’s fear that compels us—involuntarily, more often than not—to run to safety, to take shelter. Fear compels us to be cautious. It urges us to prepare against future threats by creating safe havens or, perhaps, by arming ourselves in one way or another. And if we’re cornered, fear for our very lives can compel us to turn and fight savagely. It’s a useful, efficient, even life-saving emotion.
But fear does have its downsides, too. I live in constant fear of my returning rheuma pain. Every movement of my fingers reminds me I have the disease with small tweaks and larger, sharp stabs. Underneath those lays the mean, low, throbbing ache. Dealing with it—okay, trying to ignore it—can be exhausting all by itself. “Don’t dwell on it!” I mentally shout at myself. “Just move on!” And indeed, I do. I lift the coffeepot with both hands, the left protected with a potholder. I made a loop with a dish-towel and hung it on the refrigerator handle so I can slip my forearm through it and pull the door open that way, instead of with my hand. I’ve gotten so that I pause to think, even if it’s just a moment, before I do anything. Don’t dwell? Please.
To keep the pain tamped down and tolerable—so I can get on with the rest of my life—I take prescription painkillers. But even as I swallow them my mind flashes ahead involuntarily to wonder—fearfully—how I’ll manage when this current pain gets even worst and my painkillers don’t keep it under control anymore. I’m acutely aware that the drugs will lose more and more of their efficacy as my brain learns to override them. And even as I worry, I remind myself that I should be grateful for that. My pain has an ancient, instinctual, vital purpose: to help me survive. If these drugs totally masked it, I’d be in far worse shape than I am.
It’s funny. My family thinks I’m like old shoe-leather, scuffed but tough. Mom tells me about once a week that she doesn’t know how I do it, staying active and cheerful each day when I’m struggling with so much pain. I tell her I’m not really all that tough. If I didn’t have my pain meds I’d be whimpering damply and surely disabled to uselessness nearly every day. She frowns. She asks why “they”—my rheumatologist, actually—don’t give me medicines that work better. So I explain, once again, that “they’re” doing everything “they” can. That RA is incurable, and how our bodies learn to get around the various meds over and over again, always pushing us back to square one. “Well, you’re sure stronger than I am,” she says finally. “I don’t know how you do it.”
I smile and remind her just who my mother is, and how tough she’s always been. The branch doesn’t fall far from the tree.
Back to the point, though. I’m afraid of the rheuma and I’m afraid that my fear is beginning to disable me as much as the rheuma itself does. It keeps me cowering in place, too fearful to upset the status quo.
See, my pain ramped up so much after I started working out at the gym in February that now I’m afraid to go back for fear of making it even worse. But I’m also afraid (sigh) that I’m deceiving myself. My health depends on exercise. I need it.
It’s beneficial and, I’m beginning to understand, it’s as vital as eating, sleeping and breathing. It will strengthen my muscles so they can better support my joints. It helps my body to shore up and rebuild the bone that the osteoporosis is so busily undermining. Exercise burns a few calories, which can only be beneficial considering that I can’t seem to find the courage to give up peanut butter on my toast each morning. It increases my lung capacity and toughens my heart. It burns unneeded fat. It gets me out of my normal routine for an hour or so and puts me in contact with people outside my immediate family. At the gym, my fellow exercisers feel like a community, even if it’s a small one.
I need to overcome this creeping fear for all those reasons. But just as important, I need to overcome my fear of rheumatoid arthritis and the increased pain and disability it threatens me with. Those, I think, may be my lot no matter what I do, so it can only be to my advantage to face the future with a healthier body and mind.
Now I just need to figure out how. I’m still working on it.