Touched in the head and dying of the damp: On being sickly and afraid of the AHCA

Had I been born a century earlier, I don’t know if I would have made it. I spent my first birthday in an oxygen tent because I had pneumonia.

I was born in July.

A lot of my earliest memories are of being in the hospital for surgeries. I had ear tubes installed 5 or 6 times; that’s what we called it,, or at least that’s what I’ve told myself we called it to make this a better story. Even my parents can’t remember how many times I had that surgery, how many installations, but I remember the earaches that precipitated the surgeries and made me wish for death even before I could express that thought. By the time I was ten I had already been through the chicken pox, mono (twice), pneumonia (twice), flu almost every year, and at least two major orthodonture surgeries (I’ll write another time about when I had ten *extra* teeth removed). Then there were my allergies, the most excruciating of which was poison ivy. I only have to be within a certain proximity of poison ivy to be infected; I once was so covered a Nurse Ratchett berated me before surgery as I sat in my underoos and she eyeballed the rash on, as Ian Anderson sings in one of my favorite Jethro Tull songs, “the parts they never mention.” She threatened to cancel the surgery, which was a big deal because I knew how hard it was for my parents to get off work in the first place, so being the sensitive soul that I am I took the fact that I got poison ivy as a moral failing. The surgery–my tonsillectomy and adenoidectomy, I think, which had to be done because of my jacked-up teeth and to prepare for the retainers from hell I wore for six years–went forward. The list goes on. My back issues started when I was 16; I was once on disability for four months. I had a shingles outbreak–see aforementioned Tull song–while chaperoning a youth retreat at Purdue University, which was a fun drive home.

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What’s especially funny is that my mom’s name really is Peggy. 

And, of course, you’ll be knowing that I have Bipolar Disorder, which brings with it not only the mental aspect but also the fact that depression writes itself on the body. I went through three years of hell having almost every -oscopy under the sun to deal with my stomach issues and nothing came up because it was my bipolar screaming for attention.

All of this to say, I have spent a great deal of time in bed and dealing with the attenuating anxiety that comes with fearing that everyone sees me as weak. Or unreliable. Or lazy. Oh, I know the intellectual arguments against this and it does not matter how many times people tell me such is not the case, in my mind, there is always the pull between wanting to rest so I can get better and the incessant fear that everything is going to fall apart because I am ill too often. People will stop thinking I am capable. I will be unable to fulfill my responsibilities. I wonder if my decreasing desire to do much of anything social outside church, Xavier, my studies, and the occasional village event is owed less to my being 40 and more to do with the fact that I am becoming even more sickly.

Sickly.

See, that’s the word I think would have been used for me had I been born a century earlier. That’s how it would have been written in the family lore. Oh, Aaron was the sweetest little boy but he was sickly. I imagine that I would have perished fairly young, vanquished by “the damp.” Perhaps I would have made it to early adulthood before dying in an unseemly way, only to be spoken about after a few drams of whiskey. He was touched in the head, that boySmart, but troubled.

I have the unmerited grace bestowed upon me to live in a situation in which I can maneuver my schedule to work around the illnesses. It is one of the reasons I am so transparent and honest: I want people to know that I hate this reality and when I commit to things I do so out of a genuine desire to participate and make a difference. I am writing this right now because I can’t lie in that bedroom any more worrying myself into a tizzy, so I write hoping that my words will communicate the deep, genuine desire I have to not be “sick again.” I wish my eyes were not on fire and my hands blocks of ice. I’m not ready to stop planning or to think that I can’t accomplish the things I want to do, but I also realize I kind of hit the lottery. My friends and family and community are understanding; I have a home and access to medical care. I have work that *barely* allows us to pay the basic bills. If any of these ingredients were to go, I cannot be honest about how resilient I would be. I physically cannot work a 9-5 job. It is important for me to be honest about this; it is important for all of us to be honest about how the loss of healthcare or slipping further into debt can decimate our lives. I have more of a security net than many, but it ain’t much.

I don’t feel sorry for myself and I do not ask anyone to feel sorry for me. My life is an abundance of blessings and I thank God everyday. I did nothing to deserve the incredible life I have been given, so I’m just grateful for it. The flip-side of that is being honest about what frightens me. People like me have a long history of ending up in terrible places, of having our vulnerabilities be too much to defend and we lose control. As I wait for the medication to kick in so I can go back to sleep, I am thinking about how many people have lives that can be destroyed with the single blow of an unfateful wind. Of what might happen if my healthcare goes away; if Miriam and I can’t afford to keep the house when it is passed to us. And I see a country in which a not insignificant number of people would be just fine if I were to die, because my political beliefs mean my physical ailments don’t deserve treatment. A country in which we are content to prioritize making money as a right, but not a society in which we recognize that some people, through no fault of their own, have physical and mental struggles that directly impact their everyday lives and therefore need care. I don’t know any of us who deal with chronic illness who are happy about it, or want to be a drain on others, but for fuck’s sake we are not going to just go ahead and die. That doesn’t get to be part of the deal, okay?

I will be seeing a new doctor in July and I am hoping that like finding the right therapist, this will be a key to my being able to navigate and negotiate my health more successfully. But let all of us finally take a stand against the politics of healthcare. This is not about one side winning; this is about real suffering and dying. This is about a commitment to being a species which prioritizes using knowledge to help people. All people. Because we all need help, in one way or another. There are none of us who can do this on our own. And we are none of us more deserving by merit of our birth. It baffles me that a country that was supposedly founded to stop the abuses of a ruling class has produced perhaps the most genocidal, despotic autocracy in human history. The AHCA will be a death sentence to millions. Literally millions. Some more quickly than others, but the toll will be massive. We can do better.

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