Pain is a paradox. It both gives and takes away. It’s a fickle, double-fisted force that can reveal or conceal, bless or curse, galvanize or paralyze. At best, pain wakens me to fierce joy; an electric awareness of the breath of life moving through me and every blade of grass; to the rapture pouring from cellos and flutes. With pain as my reminder, I am conscious that I stand on holy ground—but only if I allow myself to understand how precious life is.
At best, pain goads me to grab hold of my life with both hands, to push the flame of my soul higher. Pain galvanizes me to write with heightened energy that kicks in when I struggle hardest against it. I refuse to let pain beat me down, even when I have to write lying in bed with a yellow pad or laptop perched on my knees. Pain snapping at my heels propels me faster, so I won’t miss a beat, a breath, a word, or a moment to connect with the people I love. At its worst, though, when it’s too overwhelming, pain sucks up all my energy, steam-rolls me into my bed, paralyzes me, and pushes me up against a glass wall, with everyone and everything I cherish on the other side.
Most people picture pain as an enemy, a heavy-breathing Darth Vader that stalks, pounces, and always wins. I did. But after more than thirty years of living with twin auto-immune diseases, I’ve found ways to live almost peaceably with pain as my unwelcome doppelganger. I’ve learned to outwit, out-think, and overcome it—most of the time. I don’t love pain, but I try not to hate it anymore. Hate requires energy and attention I’d rather spend living my life.
It wasn’t always this way. I had to learn to control pain instead of letting it control me. Pain medication helped, as did making pain an “object”—something not-me. My work with Dr. Eric Cassell—a medical doctor taught me self-hypnosis—is key. That way, I can go into a quick trance each morning and imagine pain as a greasy-green icon I drag to one side of my computer screen each morning. Then, as Flannery O’Conner said, I can attempt to use the same twenty-six letters of the alphabet to write something no one else has ever said before.
But I still struggle with a strange paradox: How can pain, and the fear of pain, morph from curse to blessing? Why, when I’m alone in a cab, terrified, having a stroke, racing to the Neurological Institute with the entire left side of my body stone cold, pain crushing my face—why does dawn breaking over the Hudson River never look more lovely? And why do the blooming cherry and pear trees along the median strip make me think of bridesmaids in a procession toward the altar of morning? Why had the sleeping city never looked more valuable? These are more than simple distractions.
When I find myself trapped between the calipers of terror and exultation, why do I snap awake to anything beautiful or that I can construed as beautiful? My eyes become microscopes or telescopes, finely focused on the emerald-and-ivory arrangement of my spine on the fluoroscope; the network of veins on the back of my hand; the warm gold of my wedding ring. And as a thick needle enters close to my spine, I experiment: How many colors can I find if I squeeze my eyelids tight—scarlet; tighter—lemon; tighter—purple.
* * *
For most of my life, I avoided medication, including herbs, aspirin, vitamins, even (gasp) vitamin C. It takes many sessions before Dr. Cassel, a specialist in pain medication, can teach me how foolish this is.
“Not taking medication is a luxury only the Temporarily Well can afford,” he says, peering over his smudged glasses and under his scraggly white eyebrows. “And you, my dear, are not one of them, nor will you ever be again. Oh, I know you’re strong and independent—a writer, wife, and mother.” He crosses his arms and rivets his eyes on mine. “But if you want to keep going and enjoying your life, you have to take pain medicine. Otherwise, you’ll fall by the wayside.”
It’s two years after my diagnosis of CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) and I already feel as if I’m falling apart and it terrifies me, but I glare at him anyway. He’s the first doctor I’ve found who fully understands my rage, my dilemmas and frustrations, when it seems my whole life is being shattered by disease and pain.
He looks at me tenderly. “I look at you and watch you move, Ellen, and I can see pain in every inch of your body. Don’t you want to feel better?”
I’m afraid painkillers will fog up my brain, but I don’t say it.
“And tell me: Are you still living three lives—working at three full-time jobs—Bank Street, family, and going to the hospital four times a month for infusions of IVIG? Come on now.” There’s a tiny edge to his voice.
“Why are you so against it, Ellen?”
“Well, if you won’t tell me, I’ll tell you,” he says, “because I’ve heard it a trillion times: ‘I’m strong. I don’t need medicine. I want to be natural. I don’t want to be: a coward, a baby, a chicken, an addict.’”
I try not to guffaw, because he’s skewering all my reasons.
“Or a yellow-belly, chicken-livered sapsucker,” I say. “The worst insult in third-grade.” He guffaws instead.
“Yes. And there’s more,” he continues, “I want to be a good soldier, a good patient—” and he nails me right between the eyes with this one—”a good little girl. It will make me stronger if I overcome my pain. It will make me feel weak if I rely on medication. It will undercut my moral fiber. I want to be part of the Wild Frontier, Davy Crockett, the American dream. Blah-de-blah-blah-blah.”
He leans forward, engulfs my cold hands in his warm ones, and says softly, “It’s just blabber, Ellen. I hear all these excuses all the time. And I respect the anguish behind these feelings. But they do. not. take. away pain. Medicine takes away pain.” He sits back suddenly and bangs on his desk with his fist. Everything jumps—including me.
“Medicine will free you to do whatever you are capable of doing, and maybe then some. You’ll be happier. You won’t have to get that steely, unattractive look I see on your face when you’re pushing against pain.”
He sits back in his desk chair, wheezing a little.
“So shall we try it? It will be such an enormous relief for you not to walk around, sleep, make dinner, write children’s books, and love your husband and family when you don’t feel like your arms and legs are attached to live wires.”
Tears crowd into the back of my throat at just the thought of relief.
“Ellen, people have sat in that chair where you are sitting now who are dying. They have very little time left. But they don’t all suffer the pain you do. And you live with it every single day. Don’t you think it’s time to help yourself?”
I cry big, kindergarten sobs, imagining how it would feel. But—“Can you make sure it doesn’t take away my mind, Eric? Make me fuzzy and sleepy? I am so afraid of hurting my mind. It’s the only thing I can count on.”
“If the first one makes you foggy, we’ll go on to the next, and the next, and the next. Your mind is too beautiful to waste. Let’s try it, shall we?”
He scribbles on his prescription pad, then pulls me gently up to my feet.
* * *
It takes a little maneuvering, but we find a medication that doesn’t create a buzzing, gray fog in the middle of my brain, make me sleep till noon, or keep me awake all night. I have to be patient while we titrate up and down to reach exactly the right dosage. But then—I feel released from the prison of my body. Part of the real world. Far more energetic. I no longer have to fight deep aching pain to walk up a few steps or endure fireworks up my fingers and arms to pick up a pencil or edit a manuscript. I don’t waste most of my energy merely to push through the day.
Eric also makes tapes I can use to relax into protective trances that lift me above the pain that remains. Once they’re familiar, I can induce them anywhere and go right on with what I’m doing—chairing a meeting, having a treatment at the hospital, or writing my new picture book, a true story about a Hopi Butterfly Girl who used cleverness rather than violence to save her people from the warring Apache.
I realize I don’t have to see pain as an enemy relentlessly pursuing my body and me; that it’s possible to forge a truce, make the best peace we can. Otherwise, I’ll go on living in a constant stage of siege. Trading war for peace gives me much more energy to live joyously and fully, even though my diseases are incurable and may be getting worse.
* * *
Send your tired, your poor to New York City, and they’ll turn into taxi drivers. I love talking to these men, and our conversations are a great way to take the pulse of public opinion on elections, war, peace, terrorism, and the president—of any country. They come far-flung from Kashmir, Siberia, Senegal, Uzbekistan, Mongolia, and more predictable places and offer a perfect opportunity to compare America’s hostile mentality toward illness, pain, and disability with the kinder attitudes of other cultures. And I can do all this sitting down.
Many Americans seem to become blind and deaf in the face of chronic illness, and I see them quickly turn away from disability. They refuse to notice my disabilities—too inconvenient? too embarrassing?—and consequently refuse to see me. Crutches and canes usually don’t register on their radar and seem viewed as awkward and irritating when they do.
Not so with cab drivers—those from overseas, not native New Yorkers—and they almost always ask, “What happened to you?” which at first makes me want to gnash my teeth and growl. I bristle at their incessant queries about my ‘condition’ and try to get the best of them by snapping preposterous answers to their innocent questions: “I broke my legs on a flying trapeze,” or “I took a fall jumping my mare—or was it the stallion?”
But as time goes on, and pain wears me down, I’m humbler, more open to sympathy, as long as it doesn’t tip into pity. I begin to understand their questions as expressions of concern and generosity, good-hearted attempts to help, especially because they often jump out of the cab, open the door to help me and my crutches in and out, and gallantly help with my packages. And though polyneuropathy isn’t likely to be cured by diet, part of me feels healed by their nutritional suggestions, growing as they do out of genuine concern. My sarcasm feels tawdry in the face of their compassion.
I learn that my simple answer to their “What’s wrong?” or “How you get hurt?”— “a neurological disease”—almost always elicits energetic concern, promises of prayers for my recovery in a Babel of languages, and home remedies sure to cure. My favorites:
“Wodka. Lots of Wodka. For drink, and for rub on chest.”
“Beets. Eat only beets. It cure my aunt in Ghana, who once walk crazy like you. I hope it cure you, too. For you I will pray all the time.”
And my all-time favorite, from an Indian driver: “My brother, he once walk veddy, veddy bad like you, and now he walk wonderful just like me. You must rub alcohol and marijuana on your chest once every day, and you, too, will be cured.”
Either that or I will no longer care.
After I tuck myself into a corner of the cab and I enjoy slivers of stories from faraway places, I feel a bit of healing seep into my heart. At times, their kindness sets loose a few of the tears I steel myself never to shed; to my surprise, this makes me feel a bit better. I come to vastly prefer their good-hearted intrusions far more than the All-American crippled-woman-of-glass syndrome that tries to erase my very inconvenient existence.
* * *
I’m constantly on alert, asking my doctors about the best and newest drugs. I don’t spend much time trawling the Internet, and I stay away from herbs and health food essences that promise to cure whatever ails anybody. But I’m now injecting myself daily with Interleukin-1, after Simponi, my fifth bio-engineered drug (IVIG, Enbrel, Humira, and Remicade) stopped working. I feel better than I have in years, and there are no serious side effects as there were with the others (aseptic meningitis; respiratory). Some would say I’m taking enormous risks, given the small print about possible negative side effects—everything from “redness and swelling at the injection site” to “possible cancers.” But I don’t live only for tomorrow.
Each time disease creeps into another organ, I can’t help moments of panic. Then I take a deep breath and remember all I’ve learned about taking care of myself. I make an appointment with my rheumatologist or neurologist to find out what’s happening and what we can do about it, then go to the St. Luke’s-Roosevelt Center for Pain Management to repeat the procedures we know help and to explore new ways to curb new pain. I bless my partnerships with my carefully chosen doctors.
I used to kiss my pills before I swallowed them, but now there are twenty-six, not counting a Fentanyl patch. I use every resource I have—spiritual, pharmaceutical, psychological, physical—to gently push aside the iron fists of pain. I exercise as often as I can in a heated swimming pool, relishing the aquamarine water, then invite help from my body’s natural painkillers, the endorphins.
I trust that my pharmaceutical saviors will keep giving me my body back, and grant whatever physical freedom is possible—one dose at a time.
* * * * *