May 2008: There’s nothing like a near death experience to defibrillate the desire for life. I always imagined I’d take the news of my impending death with a brave, stoic grace. Instead tsunamis of panic drowned me whole.
Diagnosis: A pebble-sized blood clot lodged deep inside the back of my left knee.
Prognosis: Death within 24 hours without emergency surgery.
Cause: Factor V Leiden, an inherited disorder that makes my blood far too thick and overly prone to clot.
Treatment: Surgeons implanted a steel umbrella-like filter within my Vena Cava, the human’s largest vein—a wide river that flows life through the body’s core. Life-long reliance on blood thinners, weekly testing, and further surgery probable.
Long-term implications: I’m hemmed inside a radius travelled by automobile and airplane, along with a medication regimen that tethers me to an oncologist as my new overseer.
Bedbound, I waited for my body to break up and clear away the remnants of the clot. I imagined chunks of hardened-black bullets launching through my veins— bullets that would’ve killed me only hours before if it weren’t for my new siphon of an umbrella. And I thought an awful lot about Louise from Jeanette Winterson’s novel Written on the Body.
In graduate school I’d gotten drunk on Winterson’s sensuous language and pined over the unnamed narrator’s heartbreaking tragedy of love lost. However, I never considered the novel from Louise’s point of view, the narrator’s lover who’s diagnosed with leukemia. Elgin, a cancer specialist and Louise’s soon-to-be-ex, bargains with the narrator to save the woman whom they both love. The battle lines are drawn; negotiations falter. Elgin offers to provide exceptional medical care for Louise with one giant catch: the narrator must disappear from Louise’s life. For good.
Long-term illness strikes in much the same way as civil war; it annihilates the fulcrum rendering immobility before you realize what’s happened. I struggled with the strong sense that both Louise and I had been betrayed, that our own bodies had suddenly turned against us:
“The inside of [our] body is innocent, nothing has taught it fear. [Our] artery canals trust their cargo, they don’t check the shipments in the blood. [We] are full to overflowing but the keeper is asleep and there’s murder going on inside” (Winterson 115).
Blood: our very source of life had now turned the equivalent of death. By the time I exited emergency surgery and Louise received her diagnosis, someone else had developed our treatment plans: almighty specialists who’d refuse to consider alternative methods of healing. As a result, Louise and I catapulted head-first into the masculine West’s standards of medical treatment.
March 2010: Mindless morning television chatter eased the anxiety of illness heavy within the air. Most everyone in the oncologist’s waiting room wore a ball cap, a sock hat, or a scarf to keep hairless heads warm. I studied my puffy knees and rehearsed what I’d say: I’ve come for answers. I cannot stand to be sick any longer. My pocket bulged with a sandwich baggie full of lost hair. Guilt consumed me—how dare I complain when I had enough on my head to hide the loss? Who was I to demand answers when nearly every chair held someone fighting a deadly cancer?
Before every weekly appointment I prayed that the head nurse had retired. No such luck— the same dead-ringer for One Flew over the Cuckoo’s Nest’s Nurse Ratched led me to an examination room where she pricked my finger for a blood count.
All those practiced words came out in a jumbled mess. “It’s the meds.” I handed Nurse Ratched my bag of knotted mouse-brown hair. “My skin’s so red. Bumpy. The slightest touch hurts.”
She examined me over half-lenses, her line-thin lips pursed in irritation. She reminded me of a prison warden who could drop the guillotine without a flinch.
“It’s not the meds,” she stated matter-of-factly. “Blood thinners don’t cause hair to fall out.”
“Hair loss is listed as a side effect.”
She challenged me with her icy stare. “Where did you see that?”
“On the manufacturer’s website.”
She tossed her head back with a hard HA! It flew out at me like a launched pebble. “The Internet’s full of rubbish.” She collected her measuring instruments and left with the crisp thud of the door.
I’d become The Problem Patient. I imagined my chart read like a flared warning littered with exclamation marks:
Asks too many questions!
Looks stuff up on the Internet and believes it!!!
The oncologist entered with a cautious smile on his face and a limp handshake. “You must take the medicine,” he declared with his hands on his hips. “You have a life-long condition that will be medicated the same way you’d treat a condition like diabetes.”
We’d been through this discussion so many times. I asked if there was any other way. He insisted there wasn’t. I asked what will happen if I stopped the meds. He claimed I would get another clot and could die. On that day, though, I was armed with new information.
“I’ve done some research.” I ignored his slight groan. “Some blood thinners are derived from rat poison.”
The doctor shrugged my words away and closed my chart. “You know the risks. Continue with the meds.”
I stood at my bathroom sink. The mirror reflected someone I didn’t recognize. Bloated and egg-shell white. Dark circles of worry under my eyes. I was in desperate need of a good night’s rest and the warmth of the summer sun on my winterized skin.
I shook the medicine bottle and let the pills tumble over each other inside the plastic. Quick, before I could change my mind, I dumped the tiny orange pills that look like flattened tic-tacs into the toilet. Bubbles floated up to the water’s surface. With each flush of that toilet, I resolved to take full responsibility for my illness. With that responsibility I shouldered the right to choose how to treat my condition.
Similarly, Louise declines her cancer-specialist’s help. Soon she goes on the lam—something I fantasized at length about from the confines of my bed. Grounded, I wondered what Paris must smell like in spring or how fresh February snow in the mountains around Boulder must taste. I craved the freedom to find out.
Winterson’s narrator returns for Louise after the realization that she/he carries “only the weight of wrong-doing. I had failed Louise and it was too late. What right had I to decide how she should live? What right had I to decide how she should die?” (157). Like Louise, I was determined to take life on my own terms even if that meant death due to lack of treatment.
May 2010: Maria was as alternative as I would allow myself. The compact woman nearly half my size and twice my age instructed me to lie down on her massage table fully clothed.
Her hands traveled over the quadrants of my body, hovering inches above me in a form of Reiki. Nervous, my stomach rolled over itself. If someone had told me then that Maria would become part of my blood-healing ritual, I would’ve found it absurd.
“Blood is our life force.” Maria leaned close to examine the look of my eyes. “Yours is thick and sticky.”
I’d stopped the blood thinners and replaced them with the natural remedies that Nurse Ratched had scoffed at. Then I fired the oncologist. Ever so slowly, I limped towards some resemblance of health.
I jumped when Maria’s hands wrapped around my left calf, the spot where the clot had been. Her hands slid over my leg, gentle and warm. She closed her eyes and held her hands on what I call My Surly Stranger. Since the clot, my lower left leg had lost much of its feeling and continued to swell with areas of discoloration. Remnants of thrombosis lingered with damage of the vein.
My gaze fell on Maria’s bindi, the bloodred dot over her third eye. In the quiet I heard both of our breaths and even though her lips weren’t moving, I detected a slight hum. Soon that hum became louder. With each vibration of the sound, I felt the weight of my left leg, the connection it had to my hips, and the oceanic sound of my breath that reached all the way from the crown of my head down to my toes.
What exactly I looked for from this woman, a stranger, I couldn’t name. Did I really believe that a person could heal another through mere touch? That the movement of energy could release the body from a serious illness? The only answer I felt certain of was the way that Maria made me feel: wholly and unequivocally loved. Through Maria’s whispered prayers and hand movements, I experienced something profoundly feminine, a mysterious strength shrouded in softness. Compassion, a necessary ingredient that my medical treatment had thus far lacked, flowed from her and transcended all boundaries of body.
Maria moved to my side and her fingertips kneaded around my right hip. She pushed against the hipbone with her open palms, rocking me gently side to side. Deep within, something shifted. Panic spiked at the strange sensation and I sat up.
“Strong mind,” Maria quieted me. “Shhhhh—feel your body. It knows exactly what it needs to heal.” With her guided breath, the soothing movement lulled me into a state of tranquility. Little by little a cavern opened up, a deep well I never knew existed within the bowl of my right hip. An overwhelming sadness spilled out of the newfound opening that bit my eyes with tears.
“Trust yourself,” Maria said. “Your intuition’s a mighty force.”
Silence surrounded us once again, an utter stillness that seeped deep into the core of me.
“Listen,” Maria whispered. “Do you hear it?”
I did. I heard the thrush of my own blood whistling through brachiated veins, shooting through arteries at break-neck speed. I heard its constant thrum, the life-rush of the river inside that carried little red donuts of oxygen to every millimeter of my body. Fresh blood washed away any remnants of a war, cleansing those battlefields so everything could begin to work once again in balance.
While Winterson never tells us the fate of Louise in Written on the Body, I like to believe she’s found this same sort of love and compassion within the novel’s narrator. In the hands of her lover, I hope Louise feels the electric paddles jolt her desire for life. And with her illness in remission, I bet Louise says exactly what I still do today:
My blood. My body. My choice.
Kesey, Ken. One Flew Over the Cuckoo’s Nest. New York: Viking, 1962. Print.
Winterson, Jeanette. Written on the Body: a Novel. New York: Knopf, 1993. Print.