When you’re first diagnosed with a serious condition, most likely you’ll fall into a stunned silence. The silence will thrum in your ears and in your brain. It will undo language; it will deconstruct the words and letters that give form to your thoughts. Imagine the straight line that anchors the loop of the letter “p” flying off into space. After it, the camel’s hump of “m” and the assertive angles of capital “L.” That’s what dire news does to language. The letters will re-make themselves in a few seconds or a few hours, depending on your level of shock.
Of course, once the silence retreats like the tide, there will be a great clattering of noise: people asking you questions, you asking doctors questions, hospital nurses bellowing in your ear as you awaken from surgery, concerned friends and family phoning to see how you are. But the silence will return.
At first, I kept up with the racket that followed the silence. I tried to keep everyone apprised of my health. I explained, and then re-explained what sarcoidosis was. I educated myself about treatment options and then talked to my husband, my parents, my doctors, my friends, my family. I burned up the phone lines soliciting opinions and conveying information. Although I didn’t see it as such at the time, what I was attempting to do was build a bridge between my bizarre new illness and my life. Each letter and word, now nicely returned to its original shape, was a brick in this bridge.
Maybe if my disease had done what it was supposed to do (seventy percent of sarcoidosis cases spontaneously remit), I would have kept talking. But it didn’t. Like a drunk lost in the woods, sarcoidosis lurched from organ to organ, sometimes doubling back to hit one of them twice. My complicated disease now required complicated treatments — each of which seemed to cause a complicated health problem of its own. The initial excitement of diagnosis, and the flurry of activity to get through what I thought was a short-term crisis, gave way to the medical equivalent of World War I. I’ve been in the trenches for four years now, and the artillery is still exploding overhead. Once high doses of prednisone alone couldn’t stop the disease, I tried a chemotherapy agent called methotrexate. Then I injected myself with a fancy new drug called Enbrel. That failed. Now I’m on high doses of prednisoneandan even fancier new drug called Remicade. My notes home from the front keep getting shorter and vaguer. I’ve been shell-shocked into silence.
War imagery implies trauma, and there is a good bit of that that goes along with illness. I’ve had my share. For me, there’s been the botched liver biopsy that left me flat on my back, warned that any extra movement could cause internal bleeding. There have been surgeries and hospitalizations. There’s been the onset of neurosarcoidosis, and with it headaches and vertigo so disabling that I spent days in the hospital, curled on my side, counting the minutes until the morphine pump dripped its next dose into me. There’s been the doctor’s visit where the florid-faced internist tried to cheer me up by telling me, “Well, at least you know what will kill you.” And there’s been the other doctor’s visit, where the thin-lipped doctor in a skirt and boot ensemble just a little too fashionable for Montana said I shouldn’t count on seeing my then two-year-old son graduate from high school. And I shouldn’t leave out the handsome cardiac electro-physiologist who wouldn’t promise me I wouldn’t drop dead from the sarcoidosis in my heart.
My point isn’t to complain. I know I don’t have it as badly as others with sarcoidosis. But Idofeel besieged by this disease. It’s as if every week, I have some new manifestation of it, or some new reaction to the treatment, or some crisis emerging somewhere in my embattled body. Just as I’m sure those World War I soldiers self-edited some of their letters home (how many scenes of gangrenous feet, young men dropped by mustard gas, and dismembered bodies could a sweetheartreallywant to know about?), I have grown tired of being the bearer of bad news and catch myself omitting details about my illness. It pains the people I love to think of me hurting, to think of me stumbling around my own house because the disease has taken root in my head. My mother doesn’t want to contemplate her youngest daughter having lung damage; my friend Amy doesn’t want to hear that the sarcoidosis is in my bones; my sister doesn’t want to find out that my steroid therapy has left me diabetic or that I might not live to see Andrew enter college. I’m not saying they want ignorance — because they don’t. They want the truth, but they want the truth to be good news, something I’m in short supply of these days. Every phone call I make to report on a doctor’s visit leaves me feeling like I’m disappointing people. So rather than repeat my daily dose of doom and gloom to the many people who care about me, I find myself choosing silence. I’ll let a day or two go by before returning a phone call from a friend; before I know it, weeks have passed without me having delivered bad news.
But my newfound silence isn’t entirely noble in its origin. It’s not just about sparing other people from worrying about me. I get tired — physically, emotionally, and spiritually — of rehashing the very things in my life that make me feel sad and hopeless. I want to — I need to — step away from this disease, to have conversations about the weather, the Democratic primaries, or my son’s latest accomplishment. But everyone, quite rightly and quite kindly, wants to knowhow I’m doing. If I side-step the question, they become more direct: “How’s your health?” Brush that off with, “Oh, you know, ups and downs” or “Pretty much the same,” and they start asking specifics. It’s like trying to brush off a cobweb. And having a chronic disease already involves living among too many gossamer threads that refuse to release me. Having sarcoidosis has imbued me with a reverse claustrophobia. It is not me that is confined to a small space, but the disease within me is pressing against my cells, wiggling into crevices, crowding me out of my own body. There is no space left for me.
Once the silence starts to assert itself, it is difficult to end it.Ihave a hard enough time keeping up with the vicissitudes of my disease. Explaining it to everyone else has begun to feel impossible. Just yesterday I learned that my lungs — which have always been sound (odd, I know, given that sarcoidosis is primarily a pulmonary disease) — are now affected. Every week seems to bring a new test that reveals a new aspect of what sarcoidosis is doing to my body. I’m on a fast-moving merry-go-round. If you’ve stepped off it for a week (or if I’ve kicked you off it through my silence), how can I ever pull you back on and get you up to speed? In one week, I might have been hospitalized, had a trip to emergency room, or learned that my heart isn’t functioning properly. It is too much work to keep up, to keep you up.
Also, there is a great divide between the well and the unwell. We who live in chronic town might look like you, but our lives are fundamentally different. We move to a different rhythm — one dictated by medical appointments, medical regimens, medical successes and medical failures. Something as simple as accepting a lunch invitation is a tricky proposition for me. Will I even be awake by lunchtime? Sometimes the fatigue that comes with my illness makes me sleep until late in the afternoon. Will I be able to get out bed? Ever since the disease has moved into my brain, I have bouts of vertigo where walking across my bedroom is like navigating a ship’s deck in a storm. Will there be food for me to eat now that prednisone has made me a diabetic? Will I have the stamina to answer how I’m doing? And will I have the inner resolve not to feel like a worthless human being because my life is spent in hospitals and waiting rooms, not working at an exciting job or raising a pack of children?
Not talking about my disease — or not talking at all, which is sometimes easier given the persistent “how are you doings” — also involves a vain part of me not wanting to become tiresome to family, friends, or even acquaintances. “There’s Rebecca,” someone might say to themselves in the grocery store, before ducking out of sight down another aisle before I catch side of her. “Run into her and you’ll get stuck for an hour hearing about her liver and her T-calls.” I imagine myself as a sort of Jacob Marley, dragging my sarcoidosis around after me with a lot of clanking and ceremony. Maybe it’s better ifI’mthe one who scoots out of sight at the grocery store.
I know it’s ironic that in explaining the silence that has claimed me, I am broadcasting the news of my disease to the world through this blog. I know this means there is a piece of me that still wants to build that bridge between chronic town and your town. I can create a cathedral of silence, a welcome respite from the world of illness. But still I crave to be heard.