Last month my husband made his first joke about my illness. We had made a few meager attempts at joking before but this was the first one that took. We’d been watching our dog run in the grass and my husband claimed that he (the dog) was becoming more and more like me. No, think about it, he said. He sleeps whenever he gets a chance, the highlight of his day is eating, his favorite spot in the house is the fireplace. And hey, he added, with a twitch of his lower lip, he even walks with a limp sometimes. There was silence for a second and I felt the fizz of surprise in my chest. I sucked in my breath, my eyes locked with his, and then we exploded. We laughed until we were nearly crying, doubled over, gasping for breath. All the months of pressure and pain, fear and grief, that had been building since my diagnosis was released into the wind that day, our laughter filling the backyard and scattering the birds from their branches.
Six weeks after my diagnosis, on the morning of my birthday, I read Walt Whitman’s Song of Myself.
I CELEBRATE myself, and sing myself,…
My tongue, every atom of my blood, form’d from this soil, this air,
Born here of parents born here from parents the same, and their parents the same,
I, now thirty-seven years old in perfect health begin,
Hoping to cease not till death.
One year too late, I thought bitterly. I wasn’t celebrating and singing. I wasn’t thirty-seven and in perfect health. I was thirty-eight and still staggering under the weight of what I had learned at the ophthalmologist’s office in May.
My hip, Apple watch-wearing ophthalmologist had given me the good news first. No masses or abnormalities, he said. No signs of a stroke, dementia or injury. No developmental anomalies or infection. But, he paused and pursed his lips and I knew what was coming. Two days earlier, after an abnormal central vision test had prompted Apple Watch to send me for further testing, I had sneaked a peek at the order for my MRI. Anxious about strokes, which run in my family, I leaned over the front desk when the scheduler turned to grab my file and I saw what had been written at the very bottom of the page. Suspicious for MS.
Seeing those words, I nearly called the whole thing off. My shoulders sagged in relief. I had been tested for multiple sclerosis fifteen years earlier and the scans had come back clear. Everything was going to be fine. But something made me keep the MRI appointment all the same and when I got home that night, I googled the disease for the first time.
Until that point, at every doctor’s visit and in every obsessive internet search for what was wrong with me, I never considered MS a possibility. There was no need to keep it on my WebMD radar. I’ve already been tested for that. I don’t have it. But the night before my MRI, in the darkness of my room, my husband sleeping beside me and our two boys dreaming in the room down the hall, I read the list of symptoms Google proffered and I had the sensation of so many locks sliding home. My body was suddenly very still, the only movement the rise and fall of my chest, up and down, up and down, in front of my screen as I scanned the list again and again and again. Nearly every symptom matched. I shut my laptop and slid down under the covers, pulling my blanket up to my chin. No. I’ve already been tested for that. I don’t have it.
When I was seventeen, I woke up one morning with blurry vision. I could see but when my dad appeared in the doorway of my room, his face was fuzzy. I rubbed my eyes, washed my face, rooted around in the medicine cabinet for Visine, but there was no help for it. I spent the entire next day at an ophthalmologist’s office – a different ophthalmologist — undergoing test after test after test. By the end of the day, all of my central vision was gone. Grayed out and distorted. The doctor didn’t have a clue. Definitely not MS, he assured my parents, given that my vision loss was bilateral (involving both eyes) and MS vision loss is typically unilateral. But there was no way to know if my vision would return. As we walked out of his office, I couldn’t see him but I heard him mutter to my dad, I give it a two-thirds chance… that she’ll see again.
I had to drop out of school. I was a senior in high school and, thankfully, already accepted to my college of choice. A tutor came to the house twice a week to help me complete coursework for the one class I needed to graduate. Driving, reading, gymnastics practice and the diving team were all obviously out of the question. The collection of audio books at our small town library left a lot to be desired but my mom read Mary Higgins Clark mysteries out loud to me most evenings and slept in my room every night so I wouldn’t be afraid. Friends called on occasion and I would talk with them on our cordless phone in the dining room, running my fingers up and down the grass cloth wallpaper in the dark, trying to figure out what to talk about. It was hard to care about the prom theme when I knew I wouldn’t be there to see the crepe paper and balloons. Mostly I laid on my back on the floor of my bedroom, listening to sad ‘90’s soft rock in the walkman my parents had rushed out to buy me in a desperate attempt to make my sorry situation feel a little less dire.
After two months of bumping into furniture and rarely leaving the house, fragments of light began to splice through the grainy lines of TV static that had become my vision. And as the days wore on, shapes and colors slowly started to reassert themselves until all that was left were a few bright, tell-tale blind spots — scotomas, they’re called — in my otherwise normal field of vision. We all breathed a collective sigh of relief. How weird was that, we asked ourselves over and over again in the months that followed. How weird was that, we’d say as I resumed reading books and watching movies. How weird was that, I’d think as I started driving my car and hanging out with friends or when I pulled out my diving suit, donned my graduation gown, packed for college.
Five years later, newly married at twenty-two, I began having bouts of pulsating pain in my extremities. I’m sure it’s nothing, my don’t-worry-about-it-always-optimistic- glass-half-full husband assured me. But after several months it became bothersome enough to seek advice from my doctor but again the professionals were stumped. Nothing serious, the neurologist assured me, this one old enough to be my grandfather. It’s probably just some randomized nerve pain, he said. But given my earlier vision loss, he ordered an MRI of my brain to check for multiple sclerosis. Just in case, he said. Let’s just knock it off our list. I’m sure it’s not that. And it wasn’t. So far as we could tell. The scan was clean and I crossed it off my list of potential culprits. I never considered it again.
But my list of symptoms continued to grow. By the time I was sitting with Apple Watch ophthalmologist last May, fifteen years after that first MRI, it had expanded from nerve pain and vision loss to include vertigo and tingling, numbness and fatigue, weakness, spasticity, mobility issues, and then some. And in the intervening years I had probably spent upwards of twenty-thousand dollars out of pocket in what had become a seemingly endless search for an answer.
Now, suddenly, I had one. But, Apple Watch said after ticking off all the things I did not have. But you do have thirteen lesions in your brain that are consistent with multiple sclerosis. I’m so sorry. I felt the same stillness settle over me as I’d felt two nights earlier reading the list of symptoms in my bedroom. I knew. I nodded and looked down at my feet. I was wearing a pair of trendy hipster loafers. How preposterous they looked. My legs were crossed and I bobbed the offending shoe up and down, faster and faster as my breath began to quicken. We sat in silence for several minutes, Apple Watch passing me a tissue once, twice. Eventually he broke the silence; a gentle hand on my arm and quiet words I don’t now remember about next steps, neurologists, optic neuritis and further testing.
Margaret Atwood, in Alias Grace, says that
“When you are in the middle of a story it isn’t a story at all, but only a confusion; a dark roaring, a blindness, a wreckage of shattered glass and splintered wood; like a house in a whirlwind, or else a boat crushed by the icebergs or swept over the rapids, and all aboard powerless to stop it. It’s only afterwards that it becomes anything like a story at all. When you are telling it, to yourself or someone else.
The days and weeks following that day at the ophthalmologist’s office were indeed a dark, roaring blindness and I groped wildly, trying to get my footing. First I had to tell my husband. When I stepped through the front door of our house that day, he was already racing up the stairs, having heard my footfalls on the porch. He was breathless, waiting, staring at me. I sobbed as I told him and we stood speechless in our entryway, one of his arms around my back and the other gripping my head, holding it against his chest. I could hear his heart beating like a flock of birds.
Then there were, of course, phone calls to make and text messages to send and we were made to repeat the words over and over and over again. My parents needed to know and my sister and my brother and their families. My husband’s family. All of our friends and dear ones. Our boys, who were just seven and eight years old.
On the one hand, to finally have answers to all my questions, to finally understand what was happening inside my body was to lift a weight that had been pressing in for over a decade. It was, in its own way, validating. I had always known that something was wrong with me. But when test after test after test came up with nothing year after year, puzzling practitioners and stumping even the best of the best, even I had started to wonder if I had some sort of psychosomatic disorder exacerbated by a wild imagination. To hear that it wasn’t all in my head, that I wasn’t crazy, was to feel a vindication perhaps only the chronically ill can understand.
But to have the answer come in the form of an incurable, degenerative disease was, at best, disorienting. What did it mean to have a disease that is degenerative but not imminently fatal? What would it mean for my life? My children’s lives? My husband’s? For months afterward I tried to wrap my mind around and make meaning of what I was experiencing. But the words would not come. Writing, always a stalwart friend in times of sorrow and confusion and fear, failed to soothe. I couldn’t write and I couldn’t talk about it with coherence with anyone but my husband. So finally I gave up trying. There was nothing for me but to let myself be swept over the rapids and wait for the waters to settle beneath me.
For nearly fifteen years I had been on a quest. A journey. I wanted to know why I felt so unwell. Why did my body ail and ache in ways that my husband’s did not? Why did my friends move with such ease in the world while I struggled to get out of bed in the morning? I ate real food, worked out six days a week, I didn’t smoke or drink and I was not overweight. On the outside, I was the picture of health. Only those closest to me knew of my troubles and I’m sure even they wondered at times what I was going on about. I looked fine.
All told over the years I saw six massage therapists, one acupuncturist, three chiropractors, an osteopath, a naturopath, a bowen worker, four physical therapists, a gastroenterologist, an endocrinologist, a physiatrist, and ticked off countless trips to my general practitioner. Each one would have a theory or an idea about the possible culprit — an endocrine problem! a wonky thyroid! dehydration! — and I would balloon with hope. You should put a lift in your shoe, take out the lift in your shoe, test your hormone levels, your thyroid function, try proton pump inhibitors, learn to breathe through your pain, do more planks, deep tissue massage, myofascial release, reiki work, craniosacral work, drink this tea, take that supplement, stop eating wheat, stop eating meat, start taking supplements. Once I even ate only eggs for two days and then breathed into a tube that was sent off to a lab for testing – for what, I can’t remember. And that wasn’t even the weirdest thing I did. Twice I had to collect and store my own poop in our freezer so that it could be sent off to faraway labs for testing. I was a circus monkey jumping the hoops, riding the bike, walking the tightrope. I would try anything.
Always, dangling just out of reach, was the hope that I would one day discover the source of my troubles. One of the magic cure-alls would work and I would at last have the answer. The possibility of this taunted me, kept me up at nights falling into deeper and deeper holes of internet speculation. The elusive answer to all my troubles became to me a sacred object and I sought after it with more tenacity and dogged determination than I had ever sought any other thing. I knew that if I could find it, if I could but wrap my hands around it, I would finally have what I needed. I would finally be free to live the life I wanted.
Now, suddenly, I had the answer. My long quest was over. I knew why my feet tingled and my cheek felt wet when really it was dry. I knew why pain shot through my face and my left leg dragged. I knew why my left hand struggled to type and why I couldn’t walk that one time outside my boys’ school. I knew why I cut my thumb last Thanksgiving and didn’t notice until the blood was on the counter and what causes the crushing fatigue that feels like a hundred tiny weights hanging from my body like ornaments on a Christmas tree. I knew, finally, why “someone my age, my weight, my good health” could feel so bad. But the sacred object I had been so ardently hoping to find would not, it turned out, be my deliverance. Sacred objects rarely are. Finding it, grasping it at last, it crumbled to pieces in my hands.
In the weeks following the diagnosis, I kept imagining myself a phoenix. I didn’t know much about the mythical birds but I knew that they regenerate after death and that sounded pretty good to me. Mostly I was depressed and longed to be reborn into another life. Or, at the very least, back into the life I used to have. But what life would that be? The life before diagnosis? The life before I went blind in high school? Twenty years had passed since I had lost my vision. I had lived and I had loved in those twenty years. I had known and been known by my husband, my lover, my friend of all friends. Together we had brought newness to the earth. Twice had we created with God new life, grown in the mysterious place inside of me that none but our boys have known.
Six months after my diagnosis, I experienced my first relapse. After a sudden, gripping weakness swept through my body while on a walk in the woods near our house, I discovered I wasn’t able to walk any further and wouldn’t be able to make my way home. My husband had to leave work to pick me up and the subsequent calls to my neurologist resulted in orders for more MRIs, office visits, and a spinal tap. In between all the testing and the trips to the doctor, I spent the next few weeks sleeping. On the couch, in my bed, on the floor, in my chair, in front of the fire. I slept while my kids did homework. I slept while they played with neighborhood friends and had their afternoon snacks. I slept while my husband took them on hikes and bike rides, to the store and to school and to soccer practice. I slept until the episode passed, nearly as swiftly as it started, three weeks later. The only outward, visible sign of the episode afterwards was the aforementioned limp.
During those three weeks I also read a lot of books. When I wasn’t sleeping, I was reading. My favorite was Roxanne Gay’s Hunger and while it is a memoir of body and body image, not multiple sclerosis, it had a particular resonance for me. Gay talked about her “unruly” body and how there were so many things about it that she could not control. She wrote of the grief it wrought and the outpourings it has had in all areas of her life. As someone who was prostrate on the couch at the time, at the mercy of a body I could not control and did not understand, I was especially drawn to the section about her tattoos. Of her seven arm tattoos, Gay says,
“I wanted to be able to look at my body and see something I didn’t need to loathe, that was part of my body by my choosing entirely.”
Growing up in a conservative Christian household meant that tattoos had been, to my mind at least, strictly off limits. Even as I’ve grown and shed many layers of my upbringing, I’ve never considered a tattoo. But suddenly I could see why one might be appealing and what Gay was driving at. I longed, and still long, to be in control of my own unruly body, to have some part of it be the way it is by my choosing instead of always at the whim of a degenerative disease.
Shortly after that relapse the howling wind of pain and fear and loss that had been whirling in my ears since the diagnosis finally began to abate. I had, for months, been immersed in blogs and forums and articles about multiple sclerosis, researching relapses, wondering what the future held for me, and I had read line after line about how much people with MS hated their bodies. How much they loathed the loss of control. I understood. But as I emerged on the other side I also wondered what it might mean if I decided to love my body instead. I can’t choose when I will have another relapse or if I will make it home from a walk in the woods but maybe I can choose to love my body instead of hate it.
In ancient mythology the phoenix is a sacred female bird. Also known as the firebird, the phoenix features in various mythologies through the ages and while many threads of the story differ from culture to culture, there are some elements that are found in most, if not all, of the stories told about the magical bird. It is not, as I had once believed, just a magical creature that regenerates. The bird is not felled by one foe or another only to be reborn. The bird is not, in most mythologies, killed by a foe at all. The phoenix, after a great struggle or at the end of a long life, gathers what she needs into her nest. She isn’t the victim of arseny. Nobody sets her nest on fire. She sets her own nest on fire. She does it. She chooses to die to the life she had been living so that she can be reborn and live into a new story; sing a new song.
For so many months, as I sat in the wreckage of my diagnosis, I had been paralysed. I had looked around at the shattered glass and splintered wood that Atwood so aptly describes and wondered how I would ever be able to put all the pieces of my life back together again. I know now that isn’t possible. But I also know that I have a few options. I can stay where I am forever, rubbing the pieces of glass between my fingers like a talisman until they’re soft as sea glass, mourning what I’ve lost. Or I can get angry and bash the wood against the rocks over and over and over again until there are a thousand splinters in my hands. The months since my diagnosis have indeed seen me alternating between an immobilizing depression and a bright, bereft anger and I’m certain I will cycle through these again and again over the years. But I also know that I have other options as well. I can gather up all the shards of glass that shattered around me along with the bashed and battered wood. I can feel my way through the roaring darkness, with the wind whipping wildly in my hair, groping with my arms outstretched in front of me to sweep up all the pieces of my life, making sure to gather every remnant that remains. Then, with splintered hands and tired fingers, I can take a match and light it all on fire.
Last year on May 18th I struggled to breathe as I stumbled out of the chair at the ophthalmologist’s office and made my way to my car. I could barely see out of the windshield as I drove myself home. This year on May 18th I did something different. I am not in perfect health but I am trying to love my body. I am trying to celebrate myself and sing myself. So I walked out my front door and down the front steps, gripping the handrail tighter than I used to. I made my way to my car with tingling feet and heavy legs. But I saw clearly through my windshield as I drove to a small house with a colorful sign hanging out front and a tattoo artist waiting to give me my first tattoo. A phoenix. A phoenix who was dead but lives again, her wings stretching toward the sky; reaching, reaching, toward all the possibilities of this brand new life.