Leslie Feinberg died today. I did not know until reading the article about hir passing that zie was struggling with Lyme disease. Andrea Gibson posted about Leslie’s passing on Facebook and came out publicly as also having lived with Lyme. Leslie Feinberg and Andrea Gibson are two of the most influential and inspirational people I have ever encountered, so it’s strange to think they they have the same disease I had (have?). I never realized that other people (particularly those knew/knew of) had Lyme disease. I used to think it was something that only one other 4th grader and I had, and that it ended after I left the hospital.
I separate myself from this disease. I hardly think about it anymore, except for when I wonder if my chronic migraines and joint pain have anything to do with it and again a few weeks ago when I saw the “Lyme” challenge briefly on Facebook. I was so young when I had Lyme, I didn’t even know what it really was, apart from that it started with a rash and almost forced me to miss Christmas of 2004. I thought it was called “Limes disease”. I was scared, but also proud because not only did I have a real and serious disease but I had a meningitis infection that was really dangerous. I was in real trouble according to the doctors, which can make you feel important as a kid. Despite the scary sleepless nights alone in the hospital, the trips to the bathroom with an embarrassing collection of bags of fluid attached to IVs, a terrible christmas morning when I had to get a huge bandage ripped off my arm while I tried to open a present through tears, and the discovery that I am allergic to latex when it is on my skin for long periods of time (aka I had a nice rash just slightly larger than the bandage that occupied most of my upper arm), I still felt important. Maybe because after months of uncertainty about what what wrong with me, I finally had something concrete and defined.
I’ve had my fair share of concerns about possible diseases/illnesses/injuries, but most of the time I am overreacting or made to feel like I am, which I would retrospectively attribute to my anxiety. So for a little kid, I guess being told that there is something wrong with me that could explain what I was going through was comforting in a way (medicalization is some shit like that). I imagine though, if I were to go through this kind of thing now that I identify as trans and am supposedly an independent adult, that would be pretty scary. I can hardly imagine what kind of struggles Leslie Feinberg must have gone through in the last years of hir life as zie struggled with Lyme disease.
Death seems so unreal, and even now I’m not actually able to wrap my head around the fact that Leslie Feinberg is dead. Leslie’s death has reminded me how terrible I am at dealing with death. I think that I try to separate myself from illness and death because I internalize too much of it all the time. I am entirely too tender-hearted. I mean, for fucks sake, my heart hurts when worms are washed out by the rain and are at risk of being squished. Whenever people die, I think about death (go figures). Specifically, I think about other people who have died and all the people who will die. The Beatles are the first that come to mind, because two of them are dead and two of them are getting older. And then I’m forced to think of my Dad, because when I was little he was synonymous with the Beatles and he is close to Paul and Ringo in age, which scares me more than I thought it would.
Death is such a strange thing to conceptualize because it seems just like another experience, something closer to illness than health, yet still another experience. But it’s not just another type of experience. You cannot ask someone who has died how it was, or how they are coping. Death is a sort of end to experiences and I’m not sure how I feel about it all.
Unruly Bodies 
When someone dies, I think about death in the same way you do. I begin to think about all of the people who will die, and all of the emotions that will cause, and then, because I dig deep chasms of thoughts in my brain, I think about money, and homes, and families, and what the day will be like when X person dies, or what the world will look like after them, and on and on. As a teenager, the mere idea of death was enough to send me into spiralling, existential anxiety. Luckily, now, it takes serious concentration for me to despair about oblivion. The unfortunate thing is how prone I am to serious concentration. I don’t know what will happen when someone close to me dies. I have no idea how I’ll react. Honestly? I try not to think about it.
I find myself doing the exact same thing and I almost always come to the same conclusion, that it’s best not to think about it unless I have time and feel able to get myself out of that anxiety spiral should I go into it.
Death is such a strange and frightening thing, and you’ve articulated all the uncertainty, vagueness, and terror that surrounds it so beautifully here. I hadn’t known anyone close to me who died until very recently, and I’ve been surprised at how disconnected I still am from her death–how I’ll find myself half forming plans to visit my grandmother before I remember that she’s not there anymore. She’s not anywhere anymore. I thought that when I went to her funeral it would all click; that it would finally hit me in a wave of grief and I would finally understand it all. But I didn’t. My grandmother’s experiences ended, but the people who loved her had to live on, learning how to carry her with them in this new and distant way. And I still don’t have the closure that I wanted. I still find myself unable to fathom that she’s really gone.