I’m Afraid

February 13, 2007 at 6:20 pm (Uncategorized)

It doesn’t seem so long ago that I was first diagnosed with sarcoidosis. Out of the swirls of the anesthesia fog, the surgeon’s pinched cheeks and beaky nose slowly came into focus. “Good news,” he said. “It’s as we thought. The biopsy showed it was just sarcoidosis, not lymphoma.” He dissolved back into fog as suddenly as he had materialized, and I fell back into the dreamless post-surgery sleep that feels more like death than dozing. But I was relieved. “It’s not lymphoma. Not lymphoma. Not. Lymphoma.”

The fear I felt before the biopsy on my enlarged lymph nodes was like nothing I’d ever experienced. I had been in some pretty frightening situations before this. But now I had a child – a three-month old dumpling of a boy with dark, red hair and a smile so pure it was almost inhuman. Just as I was getting to know my son Andrew, to comprehend that I would have the privilege of sharing his life, I was told that I might have lymphoma. Cancer. The fear I felt was like a razor. It cut into my guts and my brain. The fear completely took me over. I could not settle myself. I could not push away the thought of cancer eating me away and then devouring my relationship with my son. Finally I had done something right. I had become a mother. “And now you’re going to die,” the fear said, in a sing-song voice. “Now, you’re going to die.”

“It’s just this weird disease called sarcoidosis,” we told friends and family after the biopsy. Yet every time we delivered the good news that I didn’t have cancer, we had to glance down at a sheet of paper on which I had scrawled the name of my new illness. Sarcoidosis. Our tongues tripped on this odd word. We should have paid attention to our mouths fumbling the diagnosis. Maybe it was some kind of sign, some physical manifestation that it wouldn’t be smooth sailing on glassy seas. But we didn’t. “Yeah. Sarcoidosis. We never heard of it either,” we said. “But apparently, it’s not that big of a deal. Over half of the cases just spontaneously remit. I won’t need medication. I’ll be fine.”

I recovered from the surgery and from the terrible fear. Suddenly becoming conscious of my own demise had sharpened my senses of the every day things around me. The wooden floors of our bedroom gleamed in the sunlight as though they were alive. Books and movies brought me to tears, as did simply watching my son learn more about the world. I felt like I had been given a new lease on life, that I had dodged the proverbial bullet, had gotten a second chance.

A few weeks after the surgery, I started to experience weird symptoms. My left leg would tingle as though my foot was falling asleep; then it would go numb. I tripped over that leg constantly and one time even fell down a flight of stairs. Then the left side of my face went numb. I ignored these omens, telling myself I was simply having a late reaction to the anesthesia or to childbirth. Then, my heart began behaving oddly. I would have episodes where it was beating so quickly I thought it was going to jump out of my chest. The room would reel, and the palpitations would leave me covered in a clammy sweat, my stomach roiling in nausea.

“Call the doctor,” my husband Jay told me. So I did, fully expecting he would tell me to stop being such a hypochondriac and to get on with my life. Instead he ordered a battery of tests that showed abnormal heart rhythms and likely neurosarcoidosis. Suddenly, no one was telling me that sarcoidosis was no big deal – at worst a nuisance I was lucky to have instead of something more serious. Now I was sent off to a hospital that specializes in sarcoidosis. And my life in Chronic Town began.

Three years later, that fear I felt when I thought I might have lymphoma has returned. I wonder why, after so many months of dire diagnoses and difficult medications, I am suddenly seized by the fear again. I’ll try to run away from it by shoving my nose into a book or watching a mindless movie, but I can still feel it moving inside me, fluttering in my guts like a fetus demanding to be born. What is this fear? Maybe if I can break it down into its constituent parts, I can understand it. Maybe I can ease it away.

I’m afraid of this disease.
I’ve been struggling with it for over three years, but all of a sudden, I feel defenseless. Maybe it’s because, for most of my time in Chronic Town, I’ve been able to spend my days in denial. While the Freudians might take issue with denying the reality of life, I think it’s actually much healthier not to dwell too much on the disease. I have a toddler and a husband and a life I want to live. Sickness keeps me from being a good mother, partner, writer, and human being. So I have deliberately chosen not to give sickness too much room in my life.

Until recently, I think I’ve been quite good at denying sarcoidosis. One way has been shunt my fear into anger. For instance, I’ve taken such an enormous dose of prednisone for so long that I’ve gained a significant amount of weight. Rather than brood about my disease, I’ve brooded about my thighs. I’ve gotten angry at being fat; I’ve gotten angry at the doctors who prescribed the drug; I’ve gotten angry at myself for eating a slice of chocolate cake to comfort myself. All that anger has been a colossal distraction. In a good way.  I’ve also distracted myself with the business of living. I pushed myself to work out at the gym several times a week; I taught writing classes; I started this blog; I wrote articles for work. I made myself so physically tired, I forgot about being sick.

But, after what feels like the shortest remission in the history of the world, my sarcoidosis has come back with a vengeance and has wreaked havoc on my joints. Now just getting around the house is difficult and painful. I can’t imagine spinning the elliptical machine at the gym or hiking up the steep streets around our house. I feel so crummy I can’t summon the energy to teach or to do much writing. Suddenly, at the exact moment when I feel much sicker than ever, I also have much more time and emotional space to be sicker. Without my ardent busy-ness, I have wandered into a vast territory in which to become afraid, to ponder the incredible uncertainty of my life.

The new symptoms I have are much more debilitating on a day-to-day basis than any I’ve had before. I’ve never felt well since my diagnosis, and the cardiac symptoms of the past were certainly terrifying and upsetting, but they were intermittent. I was able to move and to exist like a normal human being. For the past couple of months – especially since the debacle of my liver biopsy of a few weeks ago and the attendant internal bleeding – I’ve had to spend at least a couple of hours each day in bed. Being in bed and, when I’m not in bed, hobbling around the house as if I have glass stuck in the bottom of my feet, doesn’t do much for my self-esteem. I feel like a failure. I feel like an invalid. I feel like I am being weak, that I am letting the disease win. At times, I feel like the all-too-happy-to-be-a- helpless-invalid-in-bed character played by Barbara Stanwyck in Sorry, Wrong Number. I loathe myself for needing so much rest, and just when I muster up enough compassion for myself to remember that I am actually pretty sick, it occurs to me that I no longer know myself. My own life has become unrecognizable to me. Who is this woman who is exhausted by simply being out of bed for much of the day? Where is the person who roamed the world, who hiked for twenty miles, who couldn’t wait for each day to start?

I’m afraid of my new medications. I haven’t yet been able to take Enbrel, the anti-TNF injectable protein, because my insurance company is still mired in the approval process. (I can’t say I blame them, since the drug will cost over $1,500 each month.) But I have gotten a packet of information about the medication and the host of horrible side effects and potential adverse reactions it carries with it: contracting multiple sclerosis and other demyelinating disorders; contracting lymphoma and other malignancies; congestive heart failure; rare blood disorders; serious, fatal infections; and so one. I’m already constantly sick because the prednisone is inhibiting my immune system, and now I’m supposed to take prednisone, methotrexate, and Enbrel? I feel as if I am being skinned, and then sent out into the world with the warning not to touch anything sharp. I am shutting down a key component of my immune response. This can’t be good for my health.

I am afraid of being afraid. People don’t respond well to other people’s fears. In our winner-take-all culture of combative capitalism and tough-love foreign policy, we don’t like to dwell on the weak amongst us. You aren’t supposed to be sick, and if you are sick, then you certainly are not supposed to talk about it and fear for your life. There’s plenty of sickness everywhere, but most folks focus on cancer, which I think is the defining disease of our era. More people in the world die every year of AIDS, malaria, and common intestinal problems that stem from not having access to clean drinking water. But the numbers don’t mean anything because cancer is all we talk about. We wear pink for breast cancer, or yellow for Lance Armstrong’s cancer organization; we walk for hope and bare our bald heads, but we don’t complain about having cancer and we definitely are not afraid of cancer. We’re all supposed to be mini-Lance Armstrongs. Upon his diagnosis of testicular cancer that metastasized to his brain and lungs, Lance didn’t turn into a fraidy-cat. He fought. And he won. Even when we talk about illness in our culture, we speak only of survivors. We don’t suffer from anything; rather we survive. We’re all survivors. Sometimes I wonder if we’re talking about the legions of the walking wounded or the contestants on that seminal reality-show, but does it matter? After all, we’re winning; we’re surviving.

But I’m afraid. I don’t feel like a Survivor. I’m afraid my un-trendy disease that no one has ever heard of is going to slowly eat away at me, one organ at a time. I’m afraid it will cause my heart to stop beating, or my liver to erode. I’m afraid it will infect my brain and send crossed signals. I’m afraid it will gnaw at my lung tissue until I gasp for air. I’m afraid I’m dying.

I’m afraid I will never come back from this illness.
Being ill sucks you in and changes the way you look at the world and your place in it. I have met other chronically ill people who wear their sickness as a badge of honor; they define themselves by being sick, and the symptoms of sickness give shape to their days. I think I am lucky to have a vibrant toddler around me, who reminds me that there is more to me than the medications I take and the physicians I must visit. Andrew demands that I roll around in the snow, whether or not I feel well. He forces me to leave the house and show him the world. We go to birthday parties, and we go ice-skating. We make cookies and eat the dough. But even with Andrew pushing me to be just another Mom, I can feel the sickness altering the way I think. With all the immuno-suppressants I take, I’m afraid of catching a cold and having it turn into a walloping, serious infection. I worry when I touch the handle of a shopping cart, when one of Andrew’s buddies has a runny nose. There is a piece of me that wants to stay home in a bubble of sanitized space. I am becoming afraid of the world.

I am afraid of what this illness is doing to my marriage.
No one could ask for a more supportive partner than Jay. I’ve read of other sick people who have horribly insensitive husbands or wives. In addition to being ill, they have to deal with an oaf telling them there is nothing really wrong with them or that they should stop complaining. They don’t get extra help around the house, nor do they get any love or sympathy. Jay, on the other hand, does every conceivable thing he can to make my life a little easier, ranging from taking over laundry duty to using his vacation days to spend at doctors’ offices to making sure I get sleep on the weekends to spending every available dollar on the best health care. And he never complains.

Still, there are times, like after my liver biopsy when I was ordered to stay flat in bed for a week, when I saw the glazed look in his eyes of raw fatigue and overwhelmed-ness. He has stuck by me, even though his once-independent wife has become unable to work, and his slim bride has ballooned into a different-looking woman. “None of that matters to me,” he has told me on numerous occasions. “I love you.” And I believe him. But I also know that it must fill his heart with sorrow and regret at how much I have changed and how much our lives together have changed.

My mind has turned to thoughts of winter, since we’ve had several inches of snow in the past couple of days. I remember an afternoon, long before Andrew was born, when Jay and I went for a hike in early spring in Lake Tahoe. We walked for ten miles in unbroken snow. The sun illuminated the snow so that it looked like we were traipsing through billions of individual crystals. It was one of the most beautiful things I’ve ever seen. We ate snow, and flopped in the snow, and watched the dog run in circles around us in the snow. And then, since we were in such good shape, we decided to run intervals up and down a snow-covered hill. Up to the top we’d sprint, and then, with the cold air searing our lungs, we’d lope down and do it all again. In the scope of the adventures Jay and I have had together – eating live grubs in Thailand, driving alone in the mountains near Burma, motorcycling around the Cambodian country-side, living for over a year on a tropical island, hiking in Vietnam, scuba diving on the Great Barrier Reef – dashing up a snowy hill in the Sierra Mountains shouldn’t seem so special. But it does, not least because it is so emblematic of the small things Jay and I have lost. We’ve been told not to have another child (at least not for a while); we’ve been told to curtail our travels so that we’re always close to a major medical center; we’ve been told we may not go live abroad right now. These are all big losses. How can Jay not mourn these things? And how can he not miss walking in the woods with me? How can he not miss the small things we shared every day?

I’m afraid of not really living. I’ve never been what you would call the most cautious person. An indicator of my character is that the first time I went downhill skiing, I couldn’t be bothered to learn how to slow down by carving turns as I progressed. Instead, I pointed my ski tips straight down the mountain. Even after I learned how to slow down and stop, I preferred the fastest, most heart-stopping path down.

I’ve made more than my share of stupid mistakes with my impulsive streak. I hiked and skied and cycled the cartilage in my knees into nothingness. I’ve contracted every bizarre travel illness you can get. I’ve ruined the productivity of many a day by staying up all night dancing. I used to choose cigarettes and coffee over food . I wrote too much bad poetry. I fell in love too quickly. I used to drink until the room spun around me – and then I’d start sipping the vodka instead of chugging it. Most of my wildness had passed by the time I met Jay, and I have no urge to return to it. But, still, I feel as though I must apportion my life now. Every thing I choose to do exacts some toll on my health. If I expend energy today, I’ll pay for it tomorrow. Always thinking about the consequences of every activity deadens me. To paraphrase T. S. Eliot, I must now measure out my life with coffee spoons.

I’m not sure where my fear will leave me. And I’m not sure how much space to accord it. I’m still partial to the strategy of my youth – point the skis down the mountain; don’t think; just go down, through the fear, without stopping. There’s wisdom to this notion of moving through fear to some other side. But I’m afraid of that other side. I wish I could follow the advice of Marie Curie and say, “Nothing in life is to be feared. It is only to be understood.” But I don’t believe that. I can taste the fear against my teeth. So instead, I’ll remind myself of the words of Eleanor Roosevelt that I have posted on the wall next to my computer: “You must do the things you think you cannot do.” And that includes being sick.

7 Comments

  1. Nancy said,

    Thank you again – I have many times read about others symptoms mirroring my own – your fears have so mirrored my own – I too have the pinned/sticky quotations arround my limited world, and use them as ways to focus my whirling brain on a positive word or thought. They are small, but they help a bunch. I continue to send you strength and peace everyday – your voice is appreciated – Nan

  2. Morfeen said,

    WOW! This is the best thing you’ve ever written IMHO.
    1 — it’s so emotionally raw and real. By the very act of sorting through something in order to write about it, the writer usually puts emotional distance between herself and the subject. This is a brave piece because you’re writing right there from within the hurricane. No answers, no looking back on something from a safe distance. The immediacy of the fear is palpable.
    2 — it speaks a truth that is seldom voiced in our culture. We’ve all heard a million success stories, before and afters, that it’s a cliche. HERE is the reality that most of us live with and carry as a secret shame — when we’re the 2% that doesn’t respond to the treatment, when the miracle drug doesn’t work, when the disease is winning. Much more heroic, to face the full reality of what is happening, to wake up each day to uncertainty, and still go on.
    3 — it deals with a big theme: the existential crisis, when there is no busywork or denial to distract us, and we see our life for what it really is.
    Again, WOW!
    When you write “I’m afraid”, it’s one of the most courageous, moving, humbling acts I’ve ever witnessed.

  3. Raymond Brigleb said,

    Thanks for sharing. That was a wonderful story.

  4. rebecca said,

    Thanks, Nancy. I’m glad this resonated with you. It helps me to hear from all of you and know that we are all finding ways to cope. Thanks for the praise, Morfeen. Yes, I suppose T.S. Eliot is a tad gloomy, Josephine. Any recommendations on which Dorothy Parker to start with?

  5. Louise said,

    I’m afraid too. Afraid of pushing myself too hard; afraid of being too complacent with myself. This is the biggest challenge of my life. I want to do it right. I want to have the right attitude. I want to exercise myself back to autonomy. I want to replace the things I can’t do anymore with things I always dreamed of. I have to push myself, schedule myself, motivate myself, take the next step. I’m a fighter. But you know what the scariest part is? It’s that I don’t know if I’ll ever get there because I am sooooooo tired….

  6. Krysta said,

    Wow. I’m overwhelmed by the honesty and emotion that you put down here. You’ve got me bawling! I want to ask you about Enbrel- will you write to me?

  7. Joyce said,

    I have sarcoidosis and those horrible immune suppressants with ghastly side effects could resurrect my tuberculosis. Horrors. I have found an experimental program that is curing people with sarcoidosis, MS, RA, lupus, etc.

    You can check it out for yourself. sarcinfo.com is a site with links to marshallprotocol.com

    Good luck.

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