Gia Jones shares her 'cancer glossary'. This glossary is part of a series exploring people’s individual responses to cancer, commissioned by Theatre & Cancer author Brian Lobel. Find out more about the series.
A Cancer Glossary by Gia Jones
A startled pause, wide surprised eyes that melt into puppy dog eyes accompanied with a stammered, “I didn’t know…” A feeling that is fleeting for the friend/coworker/family member for whom it’s easier to believe the mask I wear daily after 10 years of pushing through the pain, the Gastro Intestinal issues, the weight loss and gain. I don’t usually look like I have cancer so it’s easier to forget it’s there, lurking underneath the skin, knitted into the soft-tissue of my being.
Useful cancer performances:
I do them daily, my eyes open and the world is my stage. My performance is one based in guilt. I am broken, my tumors are wounds that will not heal. In a society where your worth is directly proportional to your productivity my illness makes me invalid - as in not valid - if I let it show. So I try not to.
Desire to create a narrative:
Initially there was no narrative. It wasn’t until 6 years post-diagnosis that I began to move away from apologizing and saying “I have cancer,” full of shame. I am working on stating it like the fact that it is. Having the opportunity to share my story, an atypical one, through art and theater helps. Perhaps through creating a narrative based on true events I can begin to craft my own.
A diagnosis of cancer, the big C, was so outside of the rough draft of my life that I didn’t know how to proceed. I had big plans and a chronic illness was not supposed to be my story. With my diagnosis this shifted: withdrawal from university, moving home, loss of work, and waiting, so much waiting. Attempts to get back to the way things were have not been successful. I look at the lives of my peers and try not to feel envy at their normative lives. As I near 40, I continue to try to rebuild my life, my finances, my mental health.
Breast cancer, pediatric cancer, and lung cancer; it seems like each cancer has a ribbon and a charity. I can barely pronounce my diagnosis so how is someone else supposed to be aware of it? A lack of awareness equals a lack of understanding. “But you don’t look sick,” despite consistent issues of diarrhea and a stint of pancreatitis. Or, “You look good,” minus 50 pounds and feeling alien in my skinny body. What does awareness do other than invite guilt or a sense of schadenfreude? How does this work in a world where illness is spoken of under breath, in whispers, and in sterile rooms with paper gowns and face masks?
No dispassionate audience members:
Cancer, like comparison, is a thief of joy. You utter the word and people hunch their shoulders and pull away. It’s the boogieman in nightmares or an evil that must be stomped out. It seems everyone has a cancer story these days and when they hear mine they feel a need to tell theirs in solidarity.
No dispassionate makers of cancer work:
Learning how to tell my story has NOT made me stronger. However, it has made me braver. I feel less afraid of the ticking time bomb of tumors inside me. Simultaneously it’s also tiring. I hear all activism is. I want to shout into the void my story of living with cancer day after day without remission in sight. I feel it’s important that people know that such stories and lives exist out there in the world. I understand that when cancer touches your life it leaves a trace, its essence lingers, that there isn’t a “getting over it.” But mine, mine is different in a way that is unknown within the world of cancer narratives, theaters, and even cancer research.
Staring and passing:
“So you didn’t have chemo?”“You didn’t lose your hair?”. Growing up slightly obese (that’s how the doctors described my BMI in my first clinic trial chart) losing over 50 pounds has led to stares of approval from family, acquaintances and medical professionals. I used to be able to pass unnoticed in the way that fat people are dismissed as ugly, undesirable, and lazy. Now, when I point out pictures of myself from 8 years ago people stare in disbelief, they can hardly recognize me. My weight loss means less passing and more staring in a way that makes my body not my own. Even as I struggle to make ‘cancer patient’, ‘tumor carrier’, not my primary identity.
Cancer stories without an ending:
When I was initially diagnosed I was told I could live a relatively normal life for 10 years before I got sick. A clock immediately came to mind and the countdown began. 10 years was going to be the end of normal life. I quickly found that normal evolved for me. Initially normal was GastroIntestinal and learning where all the best public toilets were. Normal was getting used to self-injections and monthly packages of medicine in between cold packs. Next normal was creating a schedule and routine of monthly visits to the National Institute of Health for clinical trials- initially with bi-monthly CAT and PET scans. Normal became taking thyroid and blood pressure medicine to combat experimental drug side effects. Recently normal has changes again, a new clinical trial means a new routine of NIH visits every 3 weeks instead of 4. My body and my employer haven’t adjusted to this newness yet. I miss work, I miss parties, I miss sitting in the living room laughing with family as I continuously feverishly chase a normal always out of reach.
Intersectional cancer stories:
There’s a famous Audre Lorde quote about how her mere existence is activism. To quote Audre directly, “Caring for myself is not self-indulgence, it is self-preservation and that is an act of political warfare” (the emphasis is mine). This is how I feel. To my dual identities of being Black and female I have added disabled/cancer patient. Now I get to fight ableism along with racism and the patriarchy. The invisible and confusing label of class is consistently present working against and for me. When I moved home it was to be closer to my doctors and for treatment, I explained. Now I am not sure what keeps me living in an intergenerational house. However, I feel like I need to explain why a 38-year-old single woman with a full-time job lives with her mom. Is it the growing disparity between the cost of living and wages? Is it because sometimes I still get so sick that I need a dependable person to bring me soup and rinse out my vomit tub? Educational and medical debt combined? A tangled web of reasons that all sound like excuses when I say them aloud.
Cancer Club has a lifelong membership. Its members don’t have biker jackets emblazoned with patches but we exist. Being a member means acknowledging your sense of solidarity when someone discusses the sound of an MRI machine. For me it has meant dropping what I was doing to pick up a friend and take her to the ER because she’d been vomiting for 30 hours and couldn’t drive herself. I chatted about nothing during the ride and she quietly apologized for the smell as she wretched in the passenger seat. Membership means I have a “first.” A first close friend who died of brain cancer after 8 years of living with tumors in her head. It means I am the person who another friend thought to call, locked in a public toilet crying after her diagnosis because she knew I’d understand. Cancer Club members come in all shades, shapes, and stages of the disease. I pay my metaphorical dues and try my best to support others when I hear their call.
This emotion is hard for me. I tend to be wry, full of dry humor and sarcasm. More than one close friend has confided that he/she thought I hated them when we first met. Cancer is hard and ugly at times and for me the softness of sentimentality doesn’t always match up. But I did stand unflinching, crying silent tears but not looking away as a sick person told me their story. I know I can sit close by and help a friend create a list of why an ex isn’t worth tears anyways. I can also hug tight and long when words aren’t enough. For me, I don’t want to be inspirational. I don’t want your pity. Everybody has their own shit; some people carry theirs in a colostomy bag because colon cancer is a bitch.
Featured image credit: Photo by Ray Chan. Available on Unsplash via Unsplash license.