What Happens To Me Affects Who I Become

The mainstream rhetoric for a reality lived with cancer is filled with battle imagery and military terms. As if cancer and the human being diagnosed with it are opposing forces destined to have met on a battlefield set in array for the epic fray of good (the human) versus evil (the cancer).

In some ways, I dig a metaphor to solicit healthy escapism when one’s world is shaken by something as traumatic as hearing “you have cancer.” But in this case of such black-and-white language surrounding an illness that many facing “lose their battle,” I have come to question the impact of this particular diorama laid out as the normal cancer or rare disease experience for everyone.

In 2020, I was privileged to attend a virtual summer Crip Camp led by BIPOC (Black Indigenous People of Color) and disabled humans (based on the Netflix documentary of the same name). Hearing their lived experience and gleaning from their work, I learned why describing my survivorship as a “win” as opposed to others as a “loss” incorrectly puts the onus on the person living and dying with the disease at fault for either existing after treatment or passing away because of cancer or long-term treatment. If one continues to live post-cancer, they must have had a moral superiority of sorts or a better fight in them, whereas the people who died after cancer must have had a moral failing or simply gave up their fight. This perspective leaves no room for nuances like accessibility in healthcare and access to clinical trials and treatments or who has community and support systems.

In my own life, I live adjacent to my middle brother who is a professional soldier. He currently serves in the United States Army and has been for the last 16 years. He has been on tours in Iraq and Syria as well as various European countries and around the United States.

He talks of the bond with other soldiers and the shared trauma when they engage in warfare, and the shared community when they engage in building architectural projects in hope for the community they occupy. He’ll always have these humans to both mourn and find great support in when they survive and when some of them don’t.

It can seem so parallel to the cancer community, but when I’ve used military and battle terms to describe my rare life with disease and cancer, it almost feels like I’m appropriating terms specific to the experience of soldier life. While there are also parallels in the condition of PTSD that affects some military people re-entering civilian life and PTSD affects some cancer survivors, PTSD is for differing life experiences.

One major difference between soldier life literally and soldier life metaphorically is sometimes people choose to be soldiers—no one chooses to fight cancer and disease. Albeit, yes, there are political and social dynamics that have and will demand humans of certain ages to sign up for military duty.

No one engages in an ultimate good vs. evil fight in a medicalized and pathologized body. Being a part of a community wherein the commonality is the lived experience of disease and chronic illness isn’t all bad nor is it all good. Many of us have found out who we are as humans within the scope of gender and sexuality to things as benign as professions and hobbies through the lens of a cancer diagnosis. Others have also experienced the most horrible and heart-wrenching moments in their lives engaging with a system of rare that intrinsically lessens the experiences of their patients in regard to race, gender, sexuality, class, ability, size, age, and religion. Some have strengthened faith while others have found faith or disregarded faith completely. This is also relatable to veterans who have come home from war in a healthy body only to return in a disabled body.

This loaded and diverse experience under the banner of cancer deserves clarity and complex language instead of being glossed over within a strict storyline that the majority of persons experiencing this life can’t relate to themselves. Instead of others who don’t have the commonality of a cancer life determining their narrative, we should be listened to and allowed to speak about what it’s like to be us, fully.

Disability Rewritten, an advocacy page on Facebook and Instagram that is run by a human with rare disease, beautifully articulated the intersection of disability that veterans home from war experience with the disability faced by those born with it (or acquire a diagnosis later) on this Memorial Day 2023 with their essay, How Veterans Are Impacted By Disability:

“This Memorial Day it is important to remember the sacrifices many Veterans took as they defended our freedom. One such sacrifice was becoming disabled due to their service. 4.9 Million Veterans, which is 27% of all Veterans, have a service-connected disability. From physical disabilities such as Tinnitus and Paralysis, to mental disabilities such as PTSD and Depression, there is a wide variety of disabilities veterans get due to being in the military.

“Sadly, support for veterans is severely lacking. Services that are meant to help veterans such as the Veteran Affairs (VA) makes veterans jump through many hoops to get proper medical care and support that many give up. Society also ignores disabled veterans and their struggles, and instead highlights the fallen soldier or the brave heroic one that is able-bodied.

“This makes so many veterans question if the country they became disabled for truly cares about them. Most disabled people will never experience what it was like to be in the environment veterans were in. Will never know what you went through, and we thank you for protecting. However, we can still empathize in your disabled journey. People in our community share the experiences of being able-bodied at one point, or the feeling neglected by society, or the feeling of being abused by insurance and healthcare. We have to always remember to defend the rights of disabled veterans, because they have been there to defend the rights of all disabled people in all parts of the disability rights movement. They are just as valid members, and we thank you for your service today and everyday.”

The commonality with the disabled population and the military population is in public treatment after no longer being consistently healthy and with a broken healthcare system, our commonality is not in how we became disabled.

Carl Jung, the founder of analytical psychology, is quoted as saying, “I am not what happened to me, I am what I choose to become.” I may not be what happened to me, but what happens to me sure affects who I become and my public treatment by those who know what happened to me when they’re around me.

I also wouldn’t consider rare disease as happening to me so much as a condition I exist with; as in, it is not actively imposing its will onto me so much as progressing and adapting to how I live in my body on this planet.

My cancer diagnosis happened to me because I was old enough to remember getting another rare diagnosis at the age of 12. So in this way, I choose to become more than just a patient receiving chemotherapy treatments.

And it makes me question the battling rare disease and warrior rhetoric because it’s not a fair or equal fight and I won’t be a failure if it is my primary cause of death.

Cancer and rare disease sure have and do affect much of my perspective in this life. It isn’t an overcoming matter but an acceptance into new normals repeatedly.

I suppose this is also how a soldier feels about their time in service. There are indeed many intersecting layers between literal military living and literal disease living. How we got inside this disabled community is the difference. And sometimes they both collide in the same human experience. I hope to listen when someone who is both disabled and a veteran speaks.