To Speaker Ryan and the GOP, From a Woman With Multiple Sclerosis
Dear Speaker Ryan and the GOP,
Here’s a picture of me waiting to learn the details of how the #AHCA would impact my health care, preexisting conditions and disability, taken while I get my six hour immunotherapy infusion. Treatment for my progressive, incurable, neurodegenerative, autoimmune disease.
Just so you know, without the #ACA I wouldn’t have health care coverage at all, and after a grueling six years of trying every medication available for multiple sclerosis and having them fail, I wouldn’t have access to the immunotherapy concoction that has allowed me to remain mobile and keep my eyesight from failing regularly.
When I was diagnosed with multiple sclerosis, I had no health care coverage in the U.S. I was studying overseas and came home for a friend’s wedding. Then I went blind in one eye. I tried to ignore the symptoms for a week, hoping they might go away, knowing I had no health care coverage and couldn’t afford an ER visit. A week later, it got worse, and I spent seven days in the hospital. Seven days that would start a stream of tests, seizures, falling, and more. I could barely find a doctor who would see me, and all of this was paid out of pocket. The bills were in the thousands within a month or so. This process took everything I had, literally and figuratively. It was only thanks to SSI disability assistance that I was able to find a place to live and feed myself.
Yes, SSI disability not SSDI. It turns out the time I spent working for the state, and a state-funded agency that didn’t pay into Social Security, meant I was just two quarters short of the required amount of work to receive full disability coverage. Those five years of work didn’t count, and there was nothing I could do about it despite being 15 when I got my first job.
I was more than broke. I was in debt. Trying to be a good citizen, I paid my bills with everything I had, including student loans I had intended to use to finish my degree. It was thanks to the incredible kindness of my friends — one of whom allowed me to live on her floor for over a year — that I wasn’t homeless. All this while learning I now had a diagnosed, therefore preexisting, neurodegenerative disease. Lucky for me, the #ACA took effect, and thanks to it, while having nothing at all to my name, I was able to get health care. Finally, after almost a year of accruing medical debt.
The reality of my financial situation and the unpredictable nature of multiple sclerosis and its impact on my ability to function well enough for any regular job means I must remain below the poverty level in order to remain on health care and have a roof over my head. Yet you seem to believe I’m living a luxurious life on the taxpayer’s dime. Every month I hope I am able to make ends meet and maintain my independence. I have to remind myself that I am a worthy member of society and I deserve treatment for my condition.
I haven’t even mentioned the reality of learning I would slowly get sicker and sicker, likely end up immobile, and a million other things that come with life with multiple sclerosis (and the co-morbid autoimmune diseases I hadn’t yet realized I had). The reality of my condition was enough to bear. The treatments, side effects, and ever-increasing failure of my body was enough trauma to induce its own medical PTSD, but again I continued on thanks to determination, desperation, and the kindness of the people around me. I haven’t talked about the half-written dissertation that held all the passion of years of work, how I would change lives, and that I can’t finish it now. All of this is an aside to this conversation, but gives a bit of context through which you can view what I’m telling you.
When the #ACA passed I had visions of future policy discussions, dialogues about improving the system, maybe even seeing disabled Americans of all backgrounds, socioeconomic statuses, and racial/ethnic backgrounds as deserving quality of life — not just those humans you’ve given the “privilege” to continue to live. I thought I could be seen as someone who has a contribution to make regardless of my health, and that the United States is a place where you are supported when you’re struggling. I thought maybe we could do that in a way that helps people flourish. I can hear you laughing.
I believe you and your party have proven those thoughts to be nothing more than laughable, a pipe dream. Beyond that, you’ve decided it’s time to revoke that “privilege to live” you bestowed upon me. That fear you use as a tool was so successful this election. Fear of the other, the struggling, the afraid; fear of those whose lives have hit rock bottom or lives that could be beautiful but require a long-term helping hand. With that fear fostered, hate and blame are given the biggest of platforms, and it seems you have decided now might be time to take back that privilege to live. You want to revoke that “handout” because anyone of us could be “choosing” a life of poverty, stealing from the “hard-working” Americans. You embrace this, I suppose you always have, and use it in your daily dialogue discussing which of us truly deserve the help we need to simply survive and what, in your opinion, isn’t really essential to our existence.
For the last six months, I have sat and watched my life discussed as something we may just have to sacrifice so wealthy people can be wealthier and you can have a win for your party and the president. Congrats, it has dominated the news cycle in such a way that every mention of the #AHCA leaves me on the verge of a panic attack. That probably sounds silly to you. I suspect nothing you just read is new information or particularly meaningful to you and your goals. My story doesn’t evoke empathy beyond that momentary trained reaction to someone’s sad story.
No, my story doesn’t remind you that this is the story of a huge number of Americans you represent, or of human beings in need of support. It doesn’t even help you connect your policy goals to the fact that this is something that could happen to anyone — to someone you love, or even to you. I believe you are fully aware of all the things I have discussed here. You’ve heard stories like mine, you know people like me. I think you understand what your tax cuts and health care plans mean to someone like me. You repeat these party lines about maintaining accessibility despite cuts, caring about preexisting conditions by claiming we will always have “access” since insurance companies won’t be allowed to refuse us outright. You repeat this over and over, completely aware of the difference between availability and accessibility. I can’t honestly believe you do not understand the difference. I cannot believe you’d assume the homeless man standing by the door to a restaurant you are walking into has access to dining there simply because he can walk through the door.
All of this leads me to conclude that you must truly lack empathy for a good portion of your fellow Americans. It seems reasonable to assume you care more about your reputation and political power than the lives of others. At the very least, it is incredibly easy for you to forget we exist. You won’t see the blood on your hands if you accomplish even half of your goals, and that is the scariest part of all this.
So enjoy this picture. I am back home now and will be spending the night on the bathroom floor. Be aware, at least one of the moments I find myself retching in the toilet tonight will be at the thought of such incredibly thoughtless, heartless men and women celebrating the idea that they may be able to rid the American taxpayers of the burden of people like me.
A Chronically Ill, Disabled Latina Who Votes
P.S. Please feel free to prove me wrong on all points. I’m an open-minded person and always willing to rethink my opinions; maybe you are too.
Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.
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