While reading Bill Tchakirides' diary "What do people without insurance do?" earlier today; I found myself wanting to ask a question of my own:
Am I the only cancer survivor that is suffering from this crushing survivor's guilt?
I remember feeling so terribly, terribly guilty everyday on the drive to my blood and cancer clinic... I knew if I was told I needed a new drug, or yet another surgery, I'd be treated right then, that day, or the next day at the latest... and I knew that some of my friends wouldn't and there was nothing I could do to change that terrible fact.
I knew I had some of the best insurance money could buy and I wasn't going to have to wait and see whether or not my insurance was going to cover my doctor's recommendations, because I knew I was going to get whatever I needed... Unlike so many of my fellow patients.
I feel guilty because here I sit, healthy and safe... While my Uncle is dying, without even the benefit of pain meds to help ease his suffering and so many others are dying or already dead.
I have a tremendous amount of guilt, because I'm alive and so many of the friends I made during the years of treatments are not. I says friends, but really they were more than that, they were like family.
During the periods of my life that I was undergoing treatment, my friends at the clinic and the hospital were sometimes the only friends I had... I saw most of them everyday and they weren't bothered by my bald head or scared by my skeletal appearance and feeding tubes.
They knew and understood what I was going through, because they were going through the same things, right there with me. They didn't come to see me in the hospital because their parents made them and avoid eye contact the whole time they were there... They sneaked over while the nurses were changing shifts and they actually liked being around me, because like me; everyone else was uncomfortable around them too. Sneaking about in the middle of the night with my friends and making balloons out the rubber gloves in hospital rooms while giggling our fool little heads off and trying to be quiet about it, are some of my fondest childhood memories.
I was 8 years old when I was first diagnosed with non-Hodgkin's Lymphoma and even then I knew it wasn't right that I was able to get everything I needed and Jamie - the first little girl who shared my room in the hospital did not get the things she needed. Even at 8 years old I was able to figure out that just because my parents had better jobs and better insurance than other kids parents, it didn't mean I was any better than them, or I should be treated better than the other kids.
Jamie was beautiful, smart, and funny. She was absolutely stunning, before she lost all of her hair, she had curly golden locks, cute little freckles on her nose, dimples when she smiled and a gorgeous tinkling laugh. If she weren't my friend and so very, very nice, I would have been terribly jealous of Jamie. I can remember stabbing my fingers into my cheeks in a desperate attempt to give myself dimples like my older, more sophisticated friend.
She said she was going to be a scientist and discover the cure for cancer when she grew up... and who knows? She might have done it... but she never lived to see adulthood. I'm 30 now and Jamie died when she was 11.
I knew another little girl that never saw her 4th birthday. Her parents lost everything they had while trying to save their child and get her the medical treatment she needed. We had to hold a goddamned spaghetti dinner to raise money to help her parents give their little girl a proper funeral. They fought so hard and gave up so much to try to save their daughter that they had nothing left to bury their dead three year old. My heart breaks whenever I think about that family and all the families out there like them.
It should just never be... Things like that should happen in America... and yet they've been happening for nearly as long as I can remember and probably longer than that... Jamie died just after I had turned 10 and the little girl that never lived to see 4 years old faded away when I was 26.
Sixteen fucking years and people still dying because the medical system in our country is totally fucked!
I can't say that those little girls would have lived even if they'd have had good health insurance, but they'd at least have had a chance. The way it was/is, they didn't even have that; they didn't even have a chance.
I ask you... If a child is capable of figuring that the way our health care system in this country functions is wrong, what the fuck is wrong with all of the adults?
Just what the fuck is wrong with our country? The health care issue is something so freaking basic that even a child is capable of figuring it out. I can assure you that is true, because I figured it out when I WAS a child.
Like I said, I was lucky and I've known too many during the years of my life I've spent in hospitals and cancer clinics... I'm no better than anyone else and yet here I am writing this diary, while a lot of the ones that weren't lucky that I've known are dead or dying. It's just so unfair and so very, very fucked up... and I know I'll carry this guilt with me as long as I live, until every man, woman, and child can receive the same heath care that I receive.
I'll just never understand that kind of greed. I'll never understand the kind of thought process that puts profits above people, but I'm not a powerless child anymore. I'm an adult and I can vote, and I can fight to change things... and I'll never stop fighting to reform our health care system and our country, until I draw my last breath.
I've decided that last breath won't come until sometime after health care in America is seen as an inalienable right, not a source of obscene profits and I'll do it too... Because like I said before, I'm pretty lucky.