I’ve effectively lived with only one functioning lung for twenty years. So, like other long-term survivors of serious medical issues, I’m in a high-risk group. I take the coronavirus pandemic seriously, and I look to the relevant experts for guidance.
Part of why I take it so seriously is that I’m almost 34, and I’ve never had a pre-trauma identity.
Lilly Hope Lucario describes such an identity as follows:
We have no idea what it’s like to…not feel fear, severe anxiety, hypervigilance, hurt, pain and suffering. We have no point of reference to understand ‘normal.’ Trauma is our normal.
In particular, I was born with Neurofibromatosis. I had brain surgery at four, and since then I’ve had five other surgeries. I currently take almost twenty medications, some being for migraines. I see ‘super’ specialists all the time for my bones, eyes, and everything else. I’m physically disabled, too.
It was a surgery in 2000 to remove large tumors on the phrenic nerve and diaphragm (such tumors have only occurred nine times) that left me with limited lung capacity, such that a regular X-ray will make it appear as if I always have pneumonia and such that I get out of breath easily.
Before these tumors were discovered, my left lung had collapsed, causing my stomach to move to where a functioning left lung would be. My stomach and the collapsed lung had pushed my heart to the right side of my body, squeezing my right lung. My diaphragm had also become paralyzed. For months afterward, I was in far more excruciating pain than ever before or since. I had to undergo regular breathing treatments. I was unable to speak beyond a tiny whisper for about six months.
I learned from my therapist that most people have their first encounters with serious health issues and medical doctors closer to their sixties and such is often jarring for them because they lack relevant frameworks for such to make sense and lack knowledge of how to navigate the Medical Industrial Complex.
Such people have a pre-trauma identity: They know what “normal” life can be like.
And this brings me to the second little-discussed reason why an alarming number of people continue to gather with friends (and do so without masks) and continue to travel or otherwise think they are invincible: As Twitter user Kat (@Chronicparent30) says, COVID-19 seems like some distant impossibility that if it did actualize could be easily cured.
In particular, she says:
All these people (ableds) are speaking about this virus as a hypothetical scenario. They are naive to the reality of being hospitalised and facing their own mortality. They can’t fully conceptualise it because they haven’t experienced it. I have. Many disabled people have.
Also they are used to living in a body that doesn’t let them down. A body that recovers easily from illness and probably doesn’t get ill very often – that is not my baseline assumption about my own disabled body because it’s not been my experience at all.
And lastly, they operate under an assumption that if they were to contract it the medical professionals would do everything they can. They’ve not had traumatising medical experiences like I have. They’ve not been ill for years and had doctors give zero shits.
Their baseline assumption is that doctors can and will fix things. That again has not been my experience. Also goes without saying they don’t have all the fears of being disabled in this pandemic and thus seen as expendable – an opinion legitimised by our government.
Kat’s words couldn’t ringer truer to me and to others. (As of this writing, she has received 200,000 likes, comments, and retweets!)
In particular, I relate to living in a body that’s not always cooperative. I have deep first-hand knowledge about what it’s like to have long-term damage to the body. Having medical problems that can’t be solved is common for those in the know. Because of how limited medical knowledge can be and how expensive everything is, sometimes medical problems indeed simply aren’t a concern for the Imperialist White Supremacist Capitalist (Heteronormative Ableist Theistic) Patriarchy.
I don’t even have a framework for which COVID-19 could be taken lightly. There’s a constant “mental load” or level of stress that comes with already having an extensive medical history and on-going problems. COVID-19 has only heightened my hyper-awareness, a type of always-present anxiety that people laughing at COVID-19 have zero conception of. Further, COVID-19 has also re-triggered memories of my medical history, and I suspect such trauma is a common experience for survivors.
People who don’t take every precaution possible to avoid COVID-19 have no idea how dangerous this dance with the devil really is.
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