When I was diagnosed with cancer my entire life changed. My life was threatened and then put on hold, I lost all of the structure and routine that has kept me stable, but the most significant loss was the one of my body. Over the past 4 months I’ve gone through 6 rounds of chemotherapy in the hopes of combatting a form of Non-Hodgkin’s Lymphoma. Before cancer I had an intense relationship with myself, as many teenagers do, but post diagnosis everything changed. How was I supposed to treat a body that was no longer…mine? At first I felt sad, then I felt scared, but ultimately I became angry at myself for not seeing the ways my body was trying to tell me I was sick. I wasn’t sure if I felt more betrayed by my mind or my body for not telling me sooner. How could I have missed something like this? I thought I was friends with myself, or that we were at least on better terms.
Before my first hospitalization at the end of this past September, my body knew that I wouldn’t listen to my physical self, so my pain manifested emotionally. At first, I had nights where I laid in my bed staring at my ceiling thinking to myself “I feel like I’m dying, I can’t breathe”; but when I paid no attention to my physical symptoms I began to have dreadful panic attacks that made me a danger to myself– blacking out in front of people that I loved, crying about how wrong my body was, how there was something inside of me that was trying to hurt me– but I never dreamed it was something physical. I thought I had an emotional demon in me, but really I had a tumor the size of a frisbee that was covering my heart and lungs, blocking my airway.
I finished my final round of chemo 11 days ago and I’m already back in the hospital for fever, neutropenia and a suspected case of the chicken pox. When I called my clinic to report a fever, I was instructed to go to to my local emergency room. I checked myself in ( I turned 18 a month ago, all of the fun parts of being an adult are off limits right now), and calmly described my symptoms to every stranger that came through to speak to me, while my mom silently supported me from a chair that sat in the corner of the dull room that has become our regular hangout spot. I told the resident about the mysterious bumps that were popping up all over my body, but he ignored them completely to congratulate me on finishing chemo. The attending doctor glared at me when the thermometer revealed that my fever had gone away. I told the doctors that I thought I needed a blood transfusion because not only had I needed one on that exact day during past cycles, but I knew my symptoms. I could see all of my veins, I was fatigued, dizzy and had a headache. The doctors reluctantly did blood work on me, and then reassured me that I looked okay, that my blood looked normal, and that in fact I “Looked really good!” I went home feeling unhelped and humiliated, let alone really sick. The next day I was admitted to the hospital and was immediately given a blood transfusion, antibiotics, and a skin biopsy for all of my little red spots. Turns out I was right.
It’s painful to give up something that hasn’t felt like my own for such a long time. My body has belonged to girlhood, it has belonged to the notion that girls and feminine people will always feel that there’s something wrong with themselves, with their bodies. My body has belonged to gender norms, dysphoria and dysmorphia. I was a vessel that used to make love, feel pleasure, and feel truly alive; but after my diagnosis, that was taken away from me. I had to give up all of the glory my body had to offer just so I could save it. Not only do I feel the physical repercussions of countless procedures, side effects and treatments, but I have to endure the harsh realities of how hurtful it is saying yes to anyone with medical intentions. When that meant saying yes to a bone marrow sample, a spinal tap, and getting my port put in without any anesthesia, there was no question about my doing it. I don’t want to be touched all time, but I will do anything to stay alive. Saying yes meant getting a skin biopsy in my hospital bed without any prior notice, it meant getting an echocardiogram even though I wasn’t in the mood to have my chest touched by a stranger for an hour straight.
Sometimes self-care means giving your body to other people for your own well-being, even if it means that lines will be crossed and the experiences will be too intimate and too invasive for your liking. I don’t like feeling so vulnerable all the time, and it’s like my doctors know parts of my body better than I do. But sometimes doctors are so focused on treating the body itself, they forget that there’s a person in there grieving a body that isn’t theirs anymore– it is theirs when it is in their care. While there’s been strength in having the ability to give myself up out of love, I mourn my lack of choice everyday. I wish that radical self-care could be something besides consenting to poisoning myself in 6 day chunks, every 16 days for 4 months. I prefer showing myself love in other ways besides hair loss, nausea, mucositis, bone pain and mouth sores. I deserve to show myself love in the moment with no compromises.
When I’m home, I turn off the lights in my family’s shared bathroom, bring my favorite candle to life, and listen to Heart’s best album, Dreamboat Annie. I think about how cool I feel because I’m listening to Heart, and then my mind usually drifts to thinking about how I miss seeing my curls dance underwater, but I gently remind myself that not having hair means not having to wash the thick and frizzy mess that never dried correctly. After drying myself off, I cover my face in an overpriced green tea mask and let it dry for 20 minutes too long as I sit in my crumb filled bed and scroll through my social media pages. Before I go to bed, I write myself a love letter in my journal, scribble an entry in my seperate breakup journal (if I’m feeling tender enough), put on at least the top half of my retainer that rests without its case under my bed, and hug myself goodnight. I’m trying to be kinder to myself these days.
I might not know all of the numbers when it comes to my health and my blood, but I’m the one experiencing it and I know what I need. I am a part of my own treatment because I want to be, and I hope that doctors stop getting so scared of that. My body is mine, despite all of the forces trying to keep it foreign to me.
Emily Jack is an 18 year old High School senior living with Non-Hogkins Lymphoma in Brookline, MA. They enjoy giving fake Ted Talks, the rush of high school curling, and coughing when other people cough as an act of compassion.
