The Systems of Cancer, Disability, Poverty, and Everyday Life
I’m going to break open a very personal side of my cancer and disability story. As a young adult who received a brain tumor diagnosis 10 years ago and has been dealing with intensive medical treatment ever since, from scans and medication and treatment to surgeries, job changes because I could no longer do what I was doing because of a decline in my health, and subsequent conditions caused by my primary childhood cancer, and these new tumors... I was in a very similar situation to the story listed here.
Except for all the systems that are in place to help me couldn’t, because another system was in the way. I was blind, so the blindness system was supposed to cover me, even though the cancer system had the resources I needed.
Several years ago, I found myself in a similar position to the story here regarding housing. I had a beautiful home, worked hard, and then family circumstances, plus health decline from my latest round of neurosurgery forced me to the brink. There was nowhere for me to go.
And filling out all those forms when you can’t see? Yeah, good luck with that. You become everyone’s case of pass the buck, and shaking heads. You don’t get answers from anyone. And when you do, there’s something in the way, like medical bills. WE have this idea that insurance magically covers everything... and that money magically appears for meds, specialists and hospital stays. It doesn’t. And then when it doesn’t, your credit takes a hit... and then you can’t use the resources everyone points to when they tell you that you should just be able to figure out a way through this.
With tears hot in my blind eyes from cancer (and I’m not saying that to be melodramatic, but honestly because this is the first time in the media I’ve read a story so close to my own...) I sat here reading this, hearing echoes of scenes from my past few years of life almost word for word. I’m grateful to the ones who have supported my family and me in all kinds of ways... but these systems have to change. And we have to know and publicly acknowledge and deal with the consequences of financial toxicity on patients like me. As this article says, we don’t know. WE’re just falling through gaps. Believe me, I know that one all too well. So does my family. They feel it every damned day!
WE have a failing system. WE go through treatment, and all the while the medication is flowing in, we’re wondering how to afford the medication, and the rent and the food. It never stops. You’re always juggling things you can’t keep up with, no matter how much you make...
That’s the scary part. I make a very good living. But cancer takes a very big bite... bigger than I think anyone stops to fully consider, as this article says And yep, that stress adds up on me, and those nearest to me who have to live through it with me. I’m the primary source of income in my household... taking time off work isn’t an option for me. Disability payments wouldn’t cover the cancer bills I’ve racked over 10 years. I don’t know if anything ever will. I used to be on solid footing, but this is the story of my life, fight cancer, and the systems that force poverty down your throat like a pill because you got sick at the wrong time. How dare you, the systems say... and to be disabled on top of that? Or an immigrant? Or any other additional marginalization? This is the US healthcare system... and the US housing system, and the US disability system... and I’m stuck in the middle, just trying to stay alive and well and care for my family... and I’ll do whatever I have to to do that.. but yes, we choose between many times. Between meds and rent. Or food and a treatment to reduce the numbness in your limbs because you are dizzy and can’t feel your hands or feet. You choose. Every day, you live with that stress, and you choose.
I want the stories heard loud and clear. I too hid my struggles, afraid to say aloud to anyone that the systems were failing me because when I did say that, I got told I was lucky that I was disabled, someone would help me. Or someone should help. Many did. And do still when they can... but we all have struggles... and systemic failure is not one friends and family and hope can clean up. Hope is not a plan.
I’ve stayed very silent on this for years. But I’ve been at that table, sick and shaking, begging an attorney not to kick me from my home as I was on treatment. I’ve not had to go through eviction yet, because I had chosen family who took us in and I make enough that I could pay legal costs and eventually recover and pay back rent after my health recovered somewhat... but hiding these stories, shame-laden as they are, doesn’t fix them.
The systems are not print-accessible. Everything is a print form, and no one in the systems is available to make them accessible or assist in completion... so you have stacks and stacks of forms to sit with someone you trust and try to fill out.... you have waiting lists of ten years... and part of you always laughs when they tell you that because A: you make too much to qualify, and B: you’ll be lucky to live that long. It’s all you hope for. Every day. Until it’s told to you as a date when someone might be able to help you take time to recover stress-free for a few months with no work. It doesn’t work that way. At all.
Go to treatment. Go to work. Juggle food or med... Repeat.
And yet we find good moments, we enjoy life anyway. Because life doesn’t stop happening just because you have to skip a doctor’s appointment to pay the rent or skip the rent and the car repairs to buy life-saving meds... you make the trades, you live with your choices... and you try not to agonize, because you have enough to agonize over, and you can’t change it right now. You just keep working, fighting, knowing it’s not only you... so maybe if you get better someday you can change the system that is hurting you so secretly and so severely. That is my dearest wish. That people start to understand what a cancer diagnosis does to you... and you don’t have to start poor, it’ll get you there if it goes on long enough. I know that one well. And yet? I”m fighting to get better and stay that way... or something... so that no one ever has to go through some of what I’ve seen from these systems. Like what happens in this Boston Globe story. Thank you, Globe, for telling the story of so many of us... through the experience of one. WE all share it. Much love to this family... you are not alone. I’ve been right there.