Until two years ago, I had never had any real interactions with severe illness or with the US healthcare system. I am one of the lucky few living in the US who’s been able to have health insurance and access to healthcare for the vast majority of my life. Healthcare is a human right, but here in the US, we treat it like it’s a privilege and a commodity, and because of that people are forced to crowdfund for their healthcare, people go bankrupt and lose their housing because of healthcare costs, and people die every day because of lack of access to healthcare. All of this is unnecessary and shameful.
But, until two years ago, my belief that healthcare is a human right was based on my deeply held principles. It was not based on my experiences.
Two years ago, I was diagnosed with an extremely rare and particularly jacked up cancer – a sarcoma called DSRCT. DSRCT is a cancer that typically occurs in white, adolescent men between the ages of ten and 30. I am none of those things. Cancer does not care.
This diagnosis, like any cancer diagnosis, changed every part of my life and the lives of those who are closest to me. My relationship to the US healthcare system changed. My relationship to my physical body changed.
Cancer and My Physical Body
For a very long time, I have been a person concerned with the deterioration of my physical body. I don’t work out incessantly or carefully monitor what food I put into my body or anything like that. I’ve just had a deep fear of my body aging and my knees not working and my body losing strength. I have always wanted my body to be a strong and efficient machine-animal all the way until the end. Prior to my diagnosis, I never thought about how ableist that thinking was.
I’ve never projected ableist thoughts onto anyone else’s body. I truly believe that bodies all have different capabilities at different times along a person’s life path. And that’s just the way it is. But I clearly internalized certain beliefs about the capability of my particular body that made it hard for me to accept that my body could be equally valuable to me as my physical capacity changed.
I went through two years of non-stop treatment. I had the entire buffet of cancer treatments: 17 rounds of chemo, a massive sci-fi surgery, a bone marrow transplant, and 20 rounds of radiation. For whatever reasons, neither the actual cancer, nor the treatment really left me feeling physically sick or truly incapacitated. During the very first chemo treatment, I had an intimate relationship with all of the side effects you normally hear about chemo treatment, but those all vanished after the first chemo. [Shout out to naturopaths and alternatives to Western medicines]. For the rest of my time in treatment, I was in decent shape physically, but my ability to exercise and move my body would ebb and flow. During the times when my white and red blood cell counts were low, I had to guard myself against germs, so I couldn’t go to the gym. I also spent a lot of time being intimate with anemia, so my overall physical activity was limited. While I was recovering from surgery, the most I could do for several weeks was slowly walk for a few minutes at a time. Other treatments and procedures compromised my physical activity in different ways.
As my muscles began to atrophy and my fitness level decreased, I became more and more frustrated with my body. I couldn’t accept the shifting reality of my body’s ability. I am currently in the process of re-building my strength and stamina, and there are still days when I have to talk myself through feelings of inadequacy when I’m in the weight room. It’s ridiculous and self-defeating.
More Radical Reads: My Mother’s Cancer: Inside the Body of a Warrior
The Cancer Body as a Disabled Body
At one point in my treatment, I had to apply for short-term disability because I wasn’t able to work while I was recovering from surgery. Working through this process, I came to understand that, sometimes, a cancerous body is considered a disabled body. I knew this piece of information, but I still never thought of myself as someone who was living with a disability. Also, this particular definition is solely dependent on how well a body can labor within a capitalist system. I didn’t like identifying my bodily experience based on that system. But still, not identifying as a person with a disability seemed right. When I think about the people I know who’ve lived significant portions of their lives with disabilities, and I think about all of the discrimination, ostracization, and fetishization they’ve experienced, I know that my life with cancer looks nothing like theirs. Claiming to be disabled felt like it would’ve been fraudulent.
And yet, I know that all bodies fluctuate in terms of capacity. I know that most bodies will deteriorate in some ways before they pass on. And I know that, technically, if a person’s body is compromised in a way that interferes with their daily life and their ability to provide for themselves (in whatever shape that takes), then maybe they’re living with a disability. So why was I so reluctant to say that I was disabled during those years?
More Radical Reads: The Cure for Cancer Isn’t Optimism
I still don’t know the answer to that question, and I don’t know if I’ll ever settle on an answer. What I do know is that if I’m going to truly stand in solidarity with people who are differently abled and who are living with disabilities, I need to fully allow for the possibility of my body to deteriorate, to lose capacity, to become disabled. I need to relinquish the idea that I can only value my body if and when it is an autonomous body. Because that is a myth. And I deserve to love and respect my body regardless of its capabilities. That’s what radical self-love is all about. That’s why every body deserves to be loved.
[Featured Image: A photo of a person with a colorful headscarf, bright purple lipstick, a colorful beaded necklace and a bright orange crocheted top. They are smiling. Behind them are city buildings. Source: Blink O’fanaye]