By SULEIKA JAOUAD
As I mentally prepare for my bone marrow transplant I can’t help but revisit my first hospitalization following my diagnosis in May 2011. Eight months to this day, I entered a New York City hospital for five weeks of induction chemotherapy.
Within 48 hours, I was placed in isolation in a drab room where the windows didn’t open; an electronic bracelet was strapped to my wrist (my tag said my name but I half-expected to be labeled Patient 4256345); I was issued a uniform (are budget cutbacks the reason for backless hospital gowns?); my head was shaved by someone they insisted upon calling a beautician who gave “haircuts” for $25 bucks a pop (I had entered a new etiquette zone: how much do you tip for a cancer haircut?); and a triple lumen catheter was surgically implanted in my chest to create a central line through which chemotherapy and fluids would be administered. I was all tied up, with both limbs connected to a monitor holding IV bags that loomed over my bed like an awning.
This was to be the first of my many incancerations.
Over the next few weeks, I had a lot of time on my hands to reflect on the hospital experience. Before long, as my immune system became depleted, everyone who entered my room was required to wear a mask. (And I had to wear a mask anytime I left the room.) To say nothing of the loss of privacy a hospital patient endures (people burst in at all hours without notice), the face mask requirement added to the feeling of separation that distinguishes the helpers from the helped. Visually, it was a bold signpost for disease, delineating me from the rest, the sick from the healthy. What a strange sight it was to wake up day in and day out to find a cluster of doctors–only their eyes visible above their purple face masks–hovering over me. Eyes and ties. Sometimes, the rules were expanded to require visitors to wear gloves and a hospital gown. I wondered if the next stage would be hazmat suits, like in the last part of E.T. Suleika, phone home.
It dawned on me that along with the other patients on the floor, I was the “Other.” And it wasn’t the fault of the medical staff. Cancer has a way of issuing patients an instant ticket to the world of otherness. You look different, you feel different, you even sound different, as you drag the beeping monitor with you everywhere you go (I jokingly called it my “little friend”).
I couldn’t help but feel a bit like an “inmate” shackled to the schedule of the “outside world.” I remember guiltily feeling envy, and eventually some resentment, towards my visitors as they were leaving the hospital. “I’m taking a break, and I’ll be back soon,” a friend would say. I could understand this, but it also made me angry. I too desperately needed a “break.”
The escape fantasies began when I lost enough weight that I could slip my electronic bracelet off my wrist. Central Park taunted me from my window. I plotted my escape and dreamt about stepping outside the confines of the hospital and standing in the rain — even if just for a minute. Fresh air is an amusement ride in the imagination of someone who has been in the hospital for an extended stay. One day, as I was being wheeled out of the oncology ward for an emergency CT scan, I asked the man pushing my bed what would happen “if” I tried to escape from the hospital. He laughed but then gave me a serious look and said: “You’ll be in big trouble if you do: your bracelet will set off an alarm and the guards will drag you back up here.”
Finally, on a day when I was feeling relatively stable, I attempted to go through with my plan. I hid my electronic bracelet under my pillow and told the nurse I was going for a short walk. I made it as far as the cafeteria on the ground floor. Then, I froze. It was lunch time and people swarmed around me, brushing and bumping me as I tried to stand my ground. My anxiety mounted as I thought of all the germs in the air. I was having trouble breathing. What if I fell? What if I fainted? “I don’t belong here,” I realized. Within a few minutes I had returned to my room. Beep, beep. My little friend chirped. Strangely, I felt safe again.
As a cancer patient, the lexicon of punishment seems to scream out from everywhere I look. Your movement is monitored. Decisions as basic as what and when to eat require pre-approval from a higher order. Not to mention that chemotherapy feels like a semi-lethal punishment in and of itself. The medical staff plays the judge. At any moment, your doctor can issue a sentence: probation, house arrest, time in “jail,” and for some, even death row. I’ve never had to appear in court, but I imagine the adrenaline pumps the way it does before a doctor reads your biopsy results.
Of course, I was incredibly lucky to even have the option of hospitalization, a “right” denied to countless people in this country and around the world. But I couldn’t help but to reflect on the parallels between hospitals and those other (increasingly privatized) confinement palaces.
In retrospect, inventing the term “incanceration” to describe my new diagnosis reflected just how confused, scared and isolated I felt. It’s not that the hospital and my doctors were bad. Far from it. I knew they were the very best and I felt a deep sense of respect and appreciation for them. But on an irrational level, I also felt wronged by those whom I felt had “poisoned” me (medical staff who administered the chemotherapy) and by those who encouraged me (family and friends) to think positively. Finding the silver lining seemed like an impossible feat.
At the peak of my self-pity, I remember asking my favorite nurse, “Why would you ever want to work in an oncology ward?”
Her response really changed my perspective. She told me how she used to work in the spinal cord injury unit, but after a few months, she couldn’t handle the emotional toll it took on her. She transferred to oncology. “You mean there’s a place worse than here?” I asked. She described the patients who come in (often around my age) and wake up in a hospital bed only to discover that they are permanently paralyzed from the neck down.
I felt ashamed that I had forgotten one of life’s truest maxims: there’s always worse. Or to say it in a different way, people who are faced with disease, misfortune or loss in the world constitute an expansive, age-old club.
I remembered how lucky I was that a cure was even an option for me. That day, as I dragged myself out of bed to go for a walk, I forgot how tired I felt and luxuriated in the movement of my legs and the in-and-out of my breathing.
It took a long time for me to begin finding new, more positive ways of understanding what had happened to me. But learning to accept that I was very sick also helped me to realize that I needed help in order to survive this disease. Could I begin to see the hospital not as a prison, but instead as a place of healing that was at times punishing? Could I learn to view my doctors not as judges but as gate keepers to a long and complex healing process? This much I knew: I am lucky to have my family, friends and a dedicated medical team in my corner.
Still, every time I think I have come to peace with my reality, a new bump in my medical journey can quickly undo any fledgling resolve. But instead of listing all the ways in which having cancer has obstructed my freedom, I am challenging myself to think of cancer as my guru and to remind myself of all it has taught me. It’s hard, but I’m trying.
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