Incanceration

30 Jan

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.

Follow @suleikajaouad on Twitter and on her Facebook Page

 

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9 Responses to “Incanceration”

  1. Susan Ayari January 30, 2012 at 11:02 am #

    Bless you, Susu, for sharing this very personal experience with so much honesty and grace. If I am repeating myself each time I read your latest post it’s because I am struck, each time, by your ability to fearlessly bring all of us into your experience. Thank you!

  2. Camille January 30, 2012 at 12:13 pm #

    My turn to feel ashamed thinking of how strong i wanted to stay in bed this morning – i realise, reading your article , how lucky i am to go at work, even early, even in the cold weather. I’ll think differently the next days, that’s for sure.
    I send you a great bubble of French fresh air!
    Bises!!!

  3. EL January 30, 2012 at 1:00 pm #

    “incanceration” –I’d never heard that before. If you coined it, spot on.
    these are more than blogs. they are deeply reflective essays that carry a memoir quality while remaining light and at times amusing. bravo!

  4. CMW January 30, 2012 at 4:31 pm #

    the above poster said it perfectly; these are so much more than blogs. you have the talent of an artist, as you clearly are one in so many ways and beyond in capturing this experience. i look forward for you, when you can read your words at a different time, as not a current patient, but a a former. i struggle to even comment here – because i feel like i cannot say what you give all of us who are reading. but thank you.

  5. sylvie degiez February 9, 2012 at 12:00 pm #

    Beautiful writing Suleika, it really helps me, to hear you speak about your present life.
    Although you must feel so alone in this trial at times, your suffering and joy are universal.
    I didn’t realized that writing a comment wasn’t sufficient to be on your list but now I’m signed in.
    Sylvie

  6. Zoe February 19, 2012 at 8:12 pm #

    Suleika, this is so incredible. I don’t know what to say besides that. Amazing writing!

  7. Lucy Manning February 21, 2012 at 8:52 am #

    Thank you Susu for sharing and in such a beautiful and thoughtful way. Thinking about you and your family.

    Lucy
    Your old orchestra teacher from years back.

  8. Pete March 2, 2012 at 5:36 pm #

    This is Pete who sat by you Tuesday at the Rottenburg center, I watched your battery charger for you as you went in to see the doctor. Your story is so similar to my wife’s experiences. I told you that i would keep in touch. I’am computer illiterate and my daughter is forwarding my thoughts to you. You told me your brother would be giving you a bone marrow transplant, when you said it would be your brother your eyes lit up. We spoke about Knick tickets and I’m sure that in some time after your transplant you will be sitting at MSG watching the Knicks and having a sip of beer. I saw in your eyes, the eye of a tiger. You will defeat cancer and hopefully write a book to help people because you eloquent words are inspiring. My daughter is close to your age I worried at first when I saw you alone waiting to see the doctor, but after my daughter and wife read me your story I am so happy to see that you have a great support system of family and friends. Best wishes to you and keep writing always.

    • suleikajaouad March 4, 2012 at 7:16 pm #

      Hi Pete — It was great to meet you the other day. Thinking of you and your family!

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