You Have Epilepsy? Off to the Lunatic Asylum You Go!

I've been trying to figure out what I want to write for my next post, and I think I've finally got it. I am working on something, and I came across a person from the 1800's who died from epilepsy and one other thing. It said she was in a lunatic asylum.

Did you know that if I had been born in the early 1900's and prior, I would have been called a witch, put into a lunatic asylum, gotten a lobotomy, and if they were *really* nice, put me in a place for epileptics. I'm not kidding. In the 1600's during the Salem Witch Trials of Salem, Massachusetts (for which I have relatives that were both convicted "witches" and accusers), they would have considered me a witch because of my "fits" (I really hate that word). Most likely I would have been drowned, been one of the 19 people hanged, or even like the poor man, Giles Corey, who was pressed with rocks. Of course this is if the seizures hadn't killed me or fried my brain by that point.

I found out that I could have been thrown into a lunatic asylum in the 19th century and beyond, simply for having epilepsy. I watched a video about lunatic asylums that I will share below, and patients with epilepsy would often receive a "special diet" that was different from the others. Apparently they were not to be given foods that would "upset them" (the amount of quotation marks I have to use is crazy). Things such as corned beef with cabbage, and "heavy, indigestible foods." These places were literal torture, and I am sure the seizures would be even worse if I was in one of them. The stress, torture, malnutrition, etc.

In 1935, when the genius doctor named António Egas Moniz invented the lobotomy, he would have looked at me and said, "Sara is the perfect candidate for this groundbreaking procedure! She has a myriad of mental health issues and epilepsy!" I am sure I would have come out of the surgery either dead or with no bodily functions. Look at what happened to Rosemary Kennedy! I would like to think that my family wouldn't have had me get a lobotomy, but if it was normalized then and an option to help, maybe they would.

I discovered that one of my great-uncles married a woman whose cousin had epilepsy and ended up in a place called the "School for Feeble-Minded and Colony for Epileptics." Great name, huh? It changed purposes several times. This particular girl I am talking about was born in 1893, and the first seizure she had was at a year old, which temporarily paralyzed her right side. She was affected in every aspect of her life: having to miss school and other activities, having a hard time writing, weakened memory, and wearing protective padding on her head. She lived with several family members for a while until her dad decided to put her in the Colony in 1909. This makes me angry every time I think about it, and I know I'm technically not related to her, but I am close to this one. The things she went through daily, I also struggle with. She was just tossed into that place and stayed there until she died in 1920 at age 26, from either pneumonia or the result of a seizure (unsure which is correct). I was 26 when I discovered her, so it was hard. I think there's a mixture of things that bother me, but I really hate the thought of this girl enjoying her life with her family, then being thrown into that institution, if that is what they want to call it. I can almost feel the betrayal, and I am wondering how she felt. I understand it was a different time, but I don't imagine it would feel any less painful to have your family put you in this place just because you have epilepsy and they don't know how to handle you. I researched the place and it was supposedly a "nice place" that was also a school, and they say that they were supposedly "helping families cope with having a child with a disability." Something tells me these kids didn't get a lot of visitors, and I don't think my "relative" did either.

What I am saying is that my life is difficult, living with epilepsy. The unpredictability of the seizures, modern medicine only doing so much. I will say I am grateful I am not in some lunatic asylum or being strapped down or hanged. We seem to have progressed thus far. Maybe one day they will actually use the donated money to research and find better treatments.

Above is something I happened to find on Reddit when I searched "lunatic asylums" on Google. I was trying to find out if having epilepsy was actually a legitimate reason to be in one, since the person I found earlier had been in one when she died. These are apparently some of the reasons one could be admitted and they are completely ludicrous. I hope you enjoy reading them!

The link to the video I found on lunatic asylums is here.

The lesson: Be grateful that you weren't sent to a lunatic asylum because your son got married, or because you were feeling lazy.

Living Life

I keep waiting for my life to begin. Every day I think of the things I want to do and what I wish I could do, and I think, "I just have to wait a bit and then this will happen!" I have realized there's a problem with that mindset. Whether I like it or not, my life began over 27 years ago, and it's going to keep going no matter what. It won't pause, it won't let me take a break until a miracle happens to let me love things. No. It's time that I keep that in mind because I only have one life, and no matter what happens, I need to live it to the best of my abilities.

Now that I said that, I also have to say that it is easier said than done. I have so many health issues, and it makes daily life incredibly difficult to not just enjoy, but live. One of my conditions is called "Migraine With Aura." I have mentioned this in the past, but I called them "Complex Migraines." These mimic strokes, and even when they don't take me to the Emergency Room, I am in bed all day. I get extreme double vision and can't see squat or move. It's a whole thing and very traumatizing. The thing with these is they come on at random times. I will be fine the day before, but then the next morning I get one. That makes it difficult to plan things, and I have had to cancel many appointments because of it. Because of the unpredictability, I can't be sure I will be fine on the day of plans. Let's say I want to fly somewhere to visit family. Well, that may or may not happen because there is a risk I will wake up the day of my flight and not be able to see or move without assistance (and even then, I almost fall, and have). These have gotten more common over the years and it's distressing. Is it so much to ask that I go see family like I used to? Apparently so. 

I really don't want to be depressing, and my parents are always telling me to write "more uplifting and cheerful things," but then it wouldn't be authentic, and there wouldn't be a point to this blog. Sorry, Mom and Dad.

So I think I will just have to do the best I can with this life thing. I may not be one of those people that seem to have a life calling, and I may not be able to do things that others can, but I can do the best I can. And I really need to work on not talking bad about myself, but I've done it for a long time (since I was diagnosed with epilepsy) that it's just natural. I know, I know, bad Sara.

One thing I am proud of is how I have handled the past year and a half. I decided at the end of 2021, when my mental health was at its absolute worst, that I needed to take care of my mental health and that is what I have been attempting to do. It hasn't been easy, and it has involved doing things I didn't think I could do. I thought I was too weak. But I had help from someone and you know who you are.

Life is short, that saying is true. Sometimes young people are taken way too early and it's absolutely not fair, but it does show that we need to live life how we want (or are able) because life is unpredictable. I think I am going to just do the small things that make me happy.

I Deserve A Life

Want to know something frustrating? The fact that I have to fight to have even the most basic of a life. I am not going to whine, at least not now, but I do want to say some stuff.

Everybody has something going on, right? Doesn’t matter if it’s mental or physical. But what’s the basic life that most people have? You go to school until you’re 18 and then you go to college if you want, right? Oh and you probably got a job in your teens and maybe got your drivers license. But then you go to college and take whatever classes you want, at whatever time you want, probably working as well. After college you have a degree and probably do something with it, or maybe you decide to pursue something different. Oh and you’ve probably lived on your own or with roommates for a while, and maybe you’re dating and gonna get married or something. Maybe have kids.

Okay I said I wouldn’t complain but I guess I am. Well I guess what I am trying to say is that you should be grateful if you can do any of those, because the ones I was able to do, didn’t last.

I am currently working on fighting for basic needs. For example, getting my own food. I don’t have a job because I can’t work. So I rely on my parents. And I finally got SNAP (food stamps), at least for now, but the government does not really like helping people with disabilities. They tell you whether you are disabled or not and they’ve told me I am not before. How fun, huh?

It really takes a toll, and it’s quite humiliating, trying to get Disability and Social Security benefits. Going through so much and sitting on the phone for hours being #106 in line, only to be talked down to when the specialist answers. They have you scrambling, trying to prove that you are indeed disabled. I’m not a fan.

This may have been all over the place, but I’m going through a lot (ESPECIALLY) right now.

I will say how grateful I am that I am on Medicaid, because I would be doomed without it.