It’s no fault of my own that I have this disease
Even with great insurance my medical debt is racking up faster than I can pay it off
The two most recent Hell Worlds are for paid subscribers only but they’re both really good so check out excerpts of each below. The first is about a cancer surgeon who realized he was operating on a surprising number of patients who were exactly 65 years old. Hmmm. Gotta be a reason for that.
The second is about the guy who took the infamous photo of the pathetic Fyre Festival sandwich trying to sell it as an NFT to raise money for a kidney transplant so he won’t die.
Please subscribe for only $4.73 a month to read them here and here.
It’s no fault of my own that I have this disease
Often times people will send me stories saying something like “this is some real Hell World shit right here man” and I appreciate that because I love to be constantly angry all the time and to never know a moment’s peace. That was the case this week when headlines like “That Fyre Fest tweet with the sad sandwich will be auctioned as an NFT for medical expenses” started coming out. I don’t know how to define what Hell World is specifically but that certainly gets at the idea.
That Fyre Fest tweet with the sad sandwich will be auctioned as an NFT for medical expenses.
You could live an entire life dreaming up stupid shit and never land on a sentence like that not even accidentally. Its magic is unknowable.
As with anything concerning crypto or NFTs my initial reaction to the story was for my brain to shut down. But then I looked into it a little more and realized the guy who took the infamous photograph of the most pathetic sandwich of all time was trying to raise money for costs associated with a kidney transplant he is hoping to receive in the near future. As Trevor DeHaas — a 30 year old photographer from Philadelphia who now lives in San Jose — writes on his GoFundMe his “weekly blood test, daily dialysis, frequent visits to my nephrologist, and evaluation fees at transplant centers” are a significant burden.
“Even with great insurance my medical debt is racking up faster than I can pay it off,” he writes.
I think a lot of us probably saw that tweet when it was posted and thought eat shit that’s what you get you rich asshole. But Trevor turns out to be a real sweet guy who just loves the Eagles and camping and his dog and taking photographs and not dying from kidney failure.
I called Trevor to talk about his experience with kidney disease and his crowdfunding effort and our perverse American healthcare system that forces people like him into positions like this. Also about how much fun he had at the festival.
Please consider chipping in on his GoFundMe here or if you want to buy the photo go here.
It’s a sensitive thing to speak about one’s health issues in public. Did you have any trepidation about doing so?
Oh yeah. Big time. I’ve had my kidney disease since I was ten. Growing up I would keep it to myself because I would see other kids in school who had issues that they would be made fun of for. You kind of get defined by your disease by someone who’s younger who doesn’t really fully understand. For a long time I never really talked about it other than with close friends and family. I guess it was 2015, and I knew that once my health got bad enough that I wouldn’t be able to travel and go camping and do all these things I enjoy doing, so I quit my job and road tripped around the country with my dog for as long as my money lasted. I knew once I got older that might not be possible until I got a transplant. That was my first time talking about it on social media. But I still didn't talk about it too much until the time I needed a transplant, about two years ago, when my GFR, glomerular filtration rate, which is equivalent to your kidney function, dropped below 20. Once it’s below 20 you’re eligible to start being vetted for a transplant and be put on a list and start pursuing a living donor. So when I was officially eligible to receive a transplant I really started talking about it on social media to try to bring awareness to, not just myself, but that there are 100,000 people around the country waiting for organ transplants in general. But it still hasn’t gotten any easier or less awkward to talk about. I don’t know. In ways I feel bad saying this, but I feel embarrassed and ashamed of it. I have no justification for that. It’s no fault of my own that I have this disease.
No of course not.
But I still worry about judgement or people treating me different or taking it easy on me. The last thing I want is to be defined by this disease.
If it makes you feel any better I can call you an asshole here or whatever you want.
That works too!
How has living with this condition made your life more difficult? What are the general contours of the condition?
Until I was eligible for the transplant it hadn’t affected me too much in my life. It’s not something that affects you right away. For me the biggest thing was nutrition and diet. I had to be restricted to the three P’s: protein, phosphorus and potassium. Also monitor my salt intake. With kidney disease normally comes high blood pressure, which makes kidneys fail faster. For about the first twenty years of living with the disease it was more about nutrition.
Now I get why you were so pissed off about the Fyre Fest sandwich.
Well there’s a lot more to that, but that’s part of it! But since starting dialysis it’s been a major change in my life. I used to do photography full time, travelling around the country doing freelance work. Just living out of my car, sleeping in a tent. After starting dialysis that became impossible to do because I need to have an electrical connection every night and a sanitary station to hook up to. Now that my kidneys are at 8 GFR I’ve noticed a lot more symptoms of being fatigued. Somedays I deal with pain in the kidneys, and also catheter pain from the dialysis. A lot of it’s mental too. It’s definitely affected my relationships with women. Especially because I have to be hooked up to this machine every night for seven hours with a tube sticking out of my stomach. It’s made it very difficult to get back into the dating scene and feel confident.
I assume you haven’t been able to drink and do drugs for most of your life.
Correct. Well, I probably shouldn't have, but in college I didn’t take that seriously enough. I was young and naive. With this not being such a physical disease at that time it was easy to feel like I didn’t have anything wrong with me. But no, now I don’t drink at all. The last time I did was when the Eagles won the Super Bowl.
I’m a Patriots fan so once again I would like to tell you to fuck off.
Hey you guys beat us once too.
Fine. Fair is fair. I’ve written a lot about the nightmares of American healthcare, and how for people like yourself we have this sort of parallel healthcare system where people have to crowdfund medical expenses. Obviously I’d love to see you get your thing funded, but do you appreciate the sort of grim dystopian nature of this whole thing?
Yeah. In a way. It is unfortunate that GoFundMe has become the backbone of our healthcare system. But it’s also promising to see that if enough people join together we can save other people’s lives and help them get the treatment they need. Obviously our government and insurance don’t prioritize our health as much as they prioritize their income. So it has it’s pros and cons.
Of course. I don’t mean to say that it’s bad when people get help. I think it’s great. It shouldn’t have to be that way though.
Right. It should never have to be this way. Unfortunately in our country it’s profit over people.
Read the rest here. Find out how to sign up to become an organ donor in your state here.
Why do so many people get cancer at exactly age 65?
Amidst all the perversions of decency and the indifference to suffering embedded in the American for profit healthcare system there exists one (very relatively speaking) bright spot. It’s the belief and practice that our older more medically vulnerable people should be taken care of in the form of Medicare. To be sure Medicare has many faults and blind spots — as any five minute stretch watching ads on cable news about all the supplemental insurance people have to purchase on top of the Medicare coverage they already have makes apparent — but by and large it’s… decent enough. Especially compared to how we treat people under the age of 65 which essentially amounts to pay up or fuck you and oftentimes really means both pay up andfuck you still anyway.
In such a convoluted system with so many baked in impediments preventing people from receiving healthcare it’s natural that there will emerge some revealing statistical curiosities that put the inefficiency and cruelty of the whole damn thing into stark relief. A new study in the journal Cancer titled “Cancer Diagnoses and Survival Rise as 65-Year-Olds Become Medicare-Eligible” (h/t Medscape) has pointed to one I find extremely damning. They’ve highlighted a sort of medical limbo for people ages 60 to 64. People who are old enough to start getting cancer but not quite old enough to qualify for the Medicare coverage that would enable them to avail themselves of a diagnosis and subsequent care.
What happens as a result of that grim waiting period seems so obvious that when you read the results of the study it’s a wonder that it hadn’t always already occurred to us. Basically: everyone seems to get cancer at the exact age 65.
It’s not that there’s anything medically unique about that specific age — cancer doesn’t have a birthday reminder for you set up on its Facebook — but rather that people between the ages of 60 and 64 who are un- or underinsured put off getting screened for the more common types of cancer until they qualify for Medicare because then they can finally afford to get the tests necessary. It’s exactly the type of ridiculous gamble we force people to make in this country all the time when it comes to all types of health issues but on a much more serious scale. Think of people wagering that a lingering ailment or pain is nothing serious because they can’t afford to find out otherwise so they just hope it goes away or of how people will postpone seeking care because they’re waiting for their billing period to renew but in this case for years. Years that happen to be some of the most pivotal when it comes to early detection of cancer all squandered because we’re all terrified of getting the bill for saving our own lives.
Read the rest here.