Bodies When a Mystery Illness Strikes
This is what I have learned from the past months of pain: We are made of equal parts death and life.
As a child, I kept pet gerbils in my bedroom. One year, I had a female gerbil that kept eating her newborn. I would go to sleep with the aquarium at the foot of my bed, hearing her tiny scurries in the straw as she prepared to give birth. I’d wake up and see her slumped stomach, licking her paws, or fast asleep, curled in a tight ball of herself, the babies nowhere to be found. The last time she gave birth, I walked in to find the hairless curled bodies next to her, so vulnerable in their translucent skin that I could hardly look at them. I placed the newborns in a greenish Tupperware bowl, thinking this time I would save them.
In the morning, I went straight to their bowl in my closet. Their tiny claws were folded in loose fists, every single one now dead. I was six, and didn’t understand that the newborns needed to be both separated and fed; I just thought I was saving them from their mother. I never asked for another gerbil again, and when the adults died, I didn’t mourn them. I always remembered the babies the mother didn’t want, the ones it hurt me to look at.
In the summer of 2016, I return from a family trip after a week of sun and swimming, nights on the lawn at our hotel watching movies on a large outdoor screen. All through the trip and especially after our return I am conscious of a deep, unshakeable sickness, like a very bad flu.
When we arrive home, I sleep and sleep and sleep. One morning, I hear the baby cry and put my feet down on the side of the bed to stand and walk to him. My left leg is weak and my foot drags. I go to him and realize I am weaker as I pull him out of his crib.
My daughters, aged seven and four, start school. I pick out their clothes; pack their lunches every morning. They come home with handouts and I hold them close to my face, then far away—I am having trouble reading the letters. I am having trouble seeing the computer screen. I am walking with a full limp. There is pain blooming behind one eye, sometimes two. Do you have a black eye? my second grader asks one day. I always wear sunglasses now, because of the pain.
Should I buy a cane? I ask my doctor. She shrugs. If it helps .
Over the next several months, the doctors order four MRIs, a lumbar puncture, dozens and dozens of blood tests, eye scans, images of the nerves in the eyes, nerve conduction tests. My symptoms, meanwhile, come and go. There is no diagnosis, no name for what my body does—only descriptions; medications; the decision to rest or ask for help, use a cane, wear an ice-pack vest to lower my body temperature. The symptoms are similar to multiple sclerosis, but there is not enough evidence to diagnose it.
Sometimes I whisk through whole days in complete health. I can do yoga poses in my living room, one leg in the air, twist and reach. Sometimes I fall while walking slowly on the treadmill, or have a day when everything I hold seems to slip easily from my hands. Then there are days when I wake up and realize that, overnight, some new symptom has set in.
On bad days, when the family leaves and I have no work to do, no class to teach, nowhere urgent to go, I let myself be fully angry. I let myself rage at the effort it takes to leave my room and walk to the kitchen. I beat the mattress; hurl my cane across the room. If I could, I would beat every windowpane until no glass was left. Who is going to pick up the kids today? I ask myself. What plans do I need to cancel? Should I cancel them, or show up the way I am? Either way, I am judged.
This is what I have learned from the past months of unexplained illness and pain: We are made of equal parts death and life, more or less.
Some people’s experiences tip the scale toward that darker matter. These are people we seek to avoid, whose mere presence reminds us in the aisle of the grocery store, at the children’s birthday party, over dinner with friends, at school events, that what we most fear and want to deny can be embodied in a person’s physical form. The human equivalent of those newborn gerbils, so achingly bare that it is painful to look at them. We don’t know how to save them.
This is what I make of the gymnastics teacher who sees me on a bad day, when I can barely walk and am using the cane as a leg. She is the one who taught both my daughters how to flip over a beam, using their arms like two strong mini poles, swinging their bodies in the air. She is so upset she cannot speak to me, and babbles incomprehensibly. She is still babbling when I take my daughter’s hand and walk away.
We are taught to exalt the body in motion: the perfect limbs, balance, coordination, and grace dancing across an endless football field. As a young woman, my body was always praised. Its smallness; its ability to learn movements; to repeat those movements in dance and in coordination with other young bodies, to a beat that seemed to drum in the pulse of our muscled legs and thighs as we jumped, spun, held each other up. I would run and practice with weights at my ankles, my wrists, so I could will my body to do exactly what I wanted and at the precise moment I wanted it to.
I thought it was a sort of freedom, to be propelled through the air by other girls’ hands and jump split-legged into the echoes of drums, the trombone moans. I could learn a dance routine, practice it for hours with my team—at home, at friends’ homes, outside in ninety-degree heat—repeating the movements over and over with a smile. I could do it in odd layers of stifling polyester uniform, theatre makeup, sparkled and weighted pads, pom-poms, boots, and a ridiculous white cowboy hat. I could do it in a barely-there cheerleading skirt and black bloomers and a matching yellow-and-black top. When I walked out onto the field, the dance floor, no one could stop or control my body.
And I believed this was a kind of power. A power that was, during my fifteenth and sixteenth years, stripped away, nightly, by a man in the audience, using the worst kind of force: aggressive coercion. He was an expert at knowing just how to erase the power I had built up, as if it had never existed in the first place. I learned to wake up bare and build up enough power to live one more day. Every day. To squander, rebuild, remake.
A man who has been accused of sexual assault, a man who speaks of women as if they are his mules, a man who ridiculed a reporter with a physical disability, is now the President of the United States.
The day he is elected, I barely manage to walk from my car to the elevator at the rheumatologist’s office. You need a brain biopsy , she says to me. And you need chemo meds. I am still digesting this as I drag myself back to the van parked in a space that would have felt close, unremarkable, just six months ago. Today the space I have to travel to get to the van reminds me of my body’s condition. With every step, people are staring.
I make it into the car and begin to sob over the steering wheel. I have twenty minutes before I have to pick up my son from preschool. As I pay for my parking ticket, I hear laughter. Across from me, three feet away, a white man pulls his ticket neatly from the parking machine and smiles at me, a winning smile. He laughs. I am shocked into silence.
On the drive home I think of the arm movements of the disabled journalist, the ones the then-candidate emulated. He was doing something else , a Republican friend messages me. It’s not what you say it is . I think of all the words the President has used with intent to strip down, bury, or erase people; I think of all the words I’ve heard in the mouths of many others, mostly men and boys. I am in a space where wetback also means whore which also means cripple. All different words, all meant to dissolve power. What will I let it do to me?
What is wrong with you? What is wrong with you? Every day, teachers, friends, strangers, readers at my book events, ask me or tell me what is wrong with me. I know what you should do. What did you do to yourself? Maybe it’s allergies. Maybe it’s mental illness.
During flares, my body can be disconcerting to others. It is seen as a body that needs immediate holistic treatment, aligned Chakras, and Jesus. Have you talked to your psychiatrist about this? a friend asks me on the phone. Are you stressed before this happens, or after? Is this because of stress? There are so many versions of the question, with the underlying demand, unspoken: Tell me how this is not real, how you made it up in your sick mind.
Who do I remind you of? I think, when other people are busy talking about my body. I don’t blame them for wanting to look away. It is hard to miss that spread-eagled jump of youth, to consider that we might come crashing down at any moment. Thank you , I say to them. I know you want to help . I gently and gently turn, walk away, hang up on them.
You need to have a long talk with God , someone writes to me.
At our synagogue, during quiet prayer time, my mind goes blank. Why should we ask for help or saving or assistance if the condition was born not from our own doing, but was handed to us, buried in us?
I realize that I think it was not given to me. It alighted on me, like most things that happen to people or occurrences within nature. It alighted on me, and the light of God is somewhere else. God set our little boats afloat and watches. God’s body, present to me in the temple, is a body that I can fill with my prayer. I am unsure how to reach God’s light. I am unsure how to feel it or experience it. I feel like I am inside a glass sanctuary, with some greedy face not above, but beside me. What do you want , I sigh into the Shema. What thing do you want?
May the words of my mouth and the meditations of my heart be acceptable to you, Adonai, my Rock and my Redeemer.
Yih’-yu l’-ra-tzon im-rei fi, im-rei fi
V’-heg-yon li-bi l’-fa-ne-cha
A-do-nai, tzu-ri, A-do-nai
Tzu-ri v’-go-a-li, v’-go-a-li
What does God say if you hold out your hand and say, Take it ? Take more. I am not there yet, and won’t ever be.
I am unable to open my fist. I believe this life is mine. I pray with my hands in fists, my arms crossed. I am greedy, too. It is the only truthful thing I have.