From a Gryt prompt,

What things cause you to lose hope or lessen your hope?

If I just listed everything that depleted my sense of the future, I’d be here for a month, so, let’s just focus on two big ones.

  1. Watching the federal government debate over whether I should be allowed to live or die.

This is likely something that majority members will never experience. But, if Congress defunds certain aid initiatives, or deprioritizes certain medical research, that’s enough to lead to my untimely demise. I can’t speak to the experience of being an ethnic minority, but I’d imagine a similar situation would be listening to the LAPD discussing conviction quotas — it’s very sanitized and white-washed conversation surrounding practices and policies that have (dangerous) real-world consequences that your non-white friends are likely not to understand.

It’s the horrible sensation of simultaneously being hyper-reliant on society, and super-excluded/isolated from society, in a very weird, specific way. I was actually discussing this with another chronically-ill friend, that, even though there are points of intersectionality between minority groups, chronically ill people have far fewer intersectional points or empathetic perspectives available than other groups. Not to diminish their pain and suffering, but it’s a weird, bizarre, and horrible feeling when you realize that your existence is reliant on goodwill from the political majority, and you don’t really have much in common with them any more. And they get to vote on your life. Not really a comfortable feeling.

2. Watching your friends get sick and/or die.

This is what the Baby Boomers are going through right now, and, hopefully, it makes them slightly more empathetic and kind. When you go through intense treatment, you start seeing familiar faces in the infusion center, and I can not tell you what it feels like when someone in a similar situation just stops showing up. I remember the first time this happened, in a writing group for survivors when a guy who frequently attended stopped attending. When I asked the woman who ran the group what had happened, she said (I’m paraphrasing and trimming out extraneous details) that he’d gotten too sick to keep coming in. Damn. Another young survivor recently contacted me to tell me his tumor had returned. Damn. I offered everyone the best advice and condolences I could, but it still sucks more than you can begin to imagine. And your friends and acquaintances dropping like flies is horrifying (especially in the face of systemic indifference; see Item 1), but it’s way worse when you begin to realize your own, relative impotence in the face of that sort of evil. A friend recently wrote about feeling powerless in the face of an aggressively predatory and racist immigration policy that has created for-profit concentration camps. If only there was a history of resisting fascism and creating illegal networks to help people that could be applied to the current situation. In the face of a poorly-understood, nearly-abandoned set of diseases where it would take seven digits’-worth of funding to start making miniscule differences; it’s hard to drum up sympathy for her.

Ultimately, I suppose that what gets me down, consistently, is how extraordinarily isolating and dehumanizing chronic illnesses are, and how it really doesn’t have to be that way, it’s a societal choice. I feel guilty for all those times I didn’t comfort another survivor because I was in a hurry or feeling lousy; Americans are the butt of every bad joke in the industrial world because we’re sinking billions of public dollars into unnecessary military programs, while leaving the actual burden of problem-solving to the victims. I’m sorry, I don’t have any pithy or insightful remarks other than to say, “It’s a shit situation, what are you going to do?” But that should not also be the exact same response from our elected officials, who are, let’s remember, elected specifically to fix those shit situations.

What gives me hope — oddly — is that rich, famous, and powerful people are starting to die from these diseases. I’m not wishing death upon anyone, but, historically, once the wealthiest 1% realizes bad shit can happen to them, things start getting done.

Written by

Science journalist, cancer survivor, biomedical consultant, the “Wednesday Addams of travel writers.”

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