In the myth about Pandora opening the box that Zeus forbade her to, she is supposed to have let sickness, evil, and work escape into the world. Only after all that misery poured out did hope flit from the box. Hope is supposed to be an antidote to all the ugliness that escaped before it. Although hope can’t undo the havoc preceding it, at the very least, hope is thought to balance the destructive forces Pandora inadvertently unleashed. However, I don’t agree with this homage to hope. When it comes to living with a chronic illness, I wonder if hope can’t be just as damaging as the rest of the junk Pandora let loose.
Hope is a curious thing. People always encourage me not to lose hope—as if giving up hope means giving in to the sarcoidosis I’ve been fighting for over five years. But I have found that having too much hope—whether it be in a new medication’s promise to cure me or in my own stamina to survive difficult treatments like the chemotherapy I get every other week—poisons me. Hope raises my expectations; hope makes me believe that remission is just a week away. And when I turn the corner and am not cured, I feel lost and desolate.
When I suffered my recent relapse and landed flat on my back in the hospital for nine days, I was consumed by despair and wanted to give up. It wasn’t just that I had a new neurological symptom—terrifying lapses in vision. I felt lousier and bleaker because I had just experienced a taste of a different life—one that didn’t involve hospitals, searing pain, and weird neurological problems. I had listened to hope’s siren song and decided it was true. This meant that I had to deal not only with a neurosarcoidosis flare-up, but also with my dashed hopes.
Just a couple of months earlier I had thrilled in the good report I received at my semi-annual check-up with a sarcoidosis specialist. I had survived a challenging year of getting chemotherapy twice a month; I had made it through months of taking Thalidomide and getting Remicade infusions. And it looked like it had all paid off. I wasn’t instantly and magically cured, but I steadily improved. I had days without vertigo or head pain. With the doctor’s approval, I started tapering down on the drugs that had engineered my recovery. I could chip away at my daily dose of prednisone. Even better, instead of getting chemo every other week, I could wait two weeks between doses, and then—if all was well—I could transition to getting chemo once a month. It was ecstasy just to imagine having three whole weeks between infusions of Cytoxan and all its nasty side effects —nausea and vomiting, fatigue, and mouth sores.
By imagining those luscious three weeks, I allowed hope to seep under interior doors I had kept resolutely closed. Instead of enjoying and living as fully as I could during each precious day of better health, I heeded hope’s prodding. Rather than celebrate feeling better—and sharing this joy with Jay and Andrew—I strayed to dwelling on the better future I would have. I didn’t use my new extra energy to plan family outings close to home. Instead I began to yearn to visit Palau again and to travel to east Asia. I did the same thing with my work. I didn’t make much progress on my memoir or on this blog, but I used a lot of time and energy worrying about my agent, talking about all the writing I would do, and wondering what I should write after my book. I was able to start exercising on a regular basis. I quickly moved from delighting in strengthening my beleaguered body to expecting myself to be in good enough shape to go on long bike rides with Jay in the spring. I e-mailed Andrew’s kindergarten teacher and signed up to volunteer in the classroom. It would have been more meaningful to my son if I had focused on building Legos and putting him to bed at night. I forced myself to taper down and nearly off my narcotic pain medication so quickly that I made myself slightly ill with withdrawal symptoms.
And then, out of nowhere, the blindness came, the vertigo returned, the pain in my head was like a blow to my brain. As the pain intensified—and I could no longer control it with medications at home—and as the number of blindness episodes increased, I had no choice but to follow my doctor’s advice and go to the hospital. The very familiarity of the experience—the same kind and gentle nurses cared for me; the pleasant room with its view of the snowy hills seemed to have been waiting for me; the pumps delivering drugs and fluids wheezed and clicked in a rhythm I recognized–made it seem that I had made no progress. I felt like no time had passed since my last stay, that the weeks of better health were simply a mirage. Once I had tasted the sweetness of a normal life, returning to sickness was all the more bitter.
By eschewing hope, I am not resigning myself to a life of despair—though I’m sure some readers will advise me to start taking anti-depressants. After all, popular wisdom is on hope’s side. “Once you choose hope, anything’s possible,” Christopher Reeve said. “Hope never abandons you, you abandon it,” George Weinberg believed. Even Emily Dickinson, whose poetry more often than not dwelled on darker thoughts of death and obscurity, wrote, “Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops… at all.” I could fill a dozen pages with paeans to hope. They sound good, and I’m sure they even look good printed on motivational posters along with photographs of towering mountains or the sea crashing at the shore. But hope does not help me.
There’s an enormous difference between hoping for a cure and believing I’ll never be well. It is a fine line to navigate, but a line nonetheless. For me, not hoping does not mean that I won’t fight this disease with every weapon I can find. Not hoping does not mean that I have resigned myself to an untimely death or to a permanent half-life as an invalid. Not hoping does not mean that I don’t believe I can be cured or that I will be cured. Instead, by not hoping I pay more attention to the day I am living—to its battles and rewards. I’ve written before about surrendering my black and white worldview of cure and disease for the truer palate of grey that characterizes chronic illness. Sarcoidosis and other chronic, auto-immune diseases aren’t like strep throat or even cancer. There is no certitude that I’ll be cured. Certainly, I can go into remission. But counting on that remission—or making it a condition of my happiness—makes living without remission a difficult prospect for me.
When I am able to give up hope, I am happier. Maybe it’s a paradox, or maybe I’m just nuts. But hope too often whispers thoughts of the future in my ear. Hope lulls me into waiting to be cured. Better that I research the new medications I’m taking, investigate whether acupuncture can help with my pain, whether starting an “anti-inflammatory diet” can play a role in making me feel better. When I let hope carry me into a nebulous future, I find myself waiting for a week of “feeling good” to write, to start a project with Andrew, to plan a special dinner with Jay. That week rarely comes, and I remain in stasis— with hope chirping in my ear. But when I push hope back into its box, I focus on what I have here and now. I have about an hour a day to write before my neurological problems rear up; I can write a blog post in an hour or a couple of pages in my book. Maybe I can’t volunteer twice a week in Andrew’s classroom, but I do have enough stamina to bake cookies with him and read a good book to him. Although Jay and I can’t go to Laos, I have enough clarity to talk with him about his work, what he’s reading, how he is doing. It’s like Jean-Paul Sartre said in Existentialism is a Humanism. “One need not hope to undertake one’s work.”
I have much work to do. I have a son to raise, a husband to love, a book to write, friendships to nourish, a body to recondition, and a disease to vanquish. I don’t have time for hope.