Writing a post at 2 am when I’m absolutely exhausted and starting to lose it? Yeah, okay. This blog isn’t called The Late Night Writing Advice blog for nothing.
Okay, it’s 2 am and there’s something I want to talk to you guys about.
So my blog is known (I think?) as that one writing advice blog run by the visually impaired/blind person who makes posts on how to write blind characters. Those are my most popular posts. But I don’t talk as much about my personal experiences with blindness. So, here’s some of that.
I talk about the mourning period some people go through when they suddenly have a new disability, mourning the life they had before the disability and all the things they could do before but can’t do now.
For a lot of people that mourning period is depression. But saying that depression is the only form of a mourning period is a disservice and it actually hurt me in the long run to believe that.
The mourning period can take many forms, and a lot of it depends on how you got the disability, where you are in your life currently, and what your mental state was like before the disability.
Some forms are: PTSD, Anxiety, physical health issues such as fatigue, insomnia, oversleeping, anger, denial, emotional suppression followed by outbursts or emotional breakdowns. That’s off the top of my sleep deprived mind at least.
My personal experience of the mourning period was developing (redeveloping?) an anxiety disorder.
This is going to get long, but please keep reading. It’s important.
I had (and still would have had even if I never went blind) at least some anxiety. I thought it was social anxiety, but I would say it was more generalized anxiety, it’s just that the social aspect was what I was most concerned with when I got my diagnosis at age fifteen.
Uh, mental health history? I’ve had lifelong insomnia and anxiety and have struggled off and on with depression. I also might have had some PTSD in the past, though it was never diagnosed. I also have ADHD but I didn’t know that or get diagnosed until this past year, 2019.
I started noticeably going blind at the age of 22. I’d always needed glasses, but I was never (in italics) blind. Glasses always corrected to 20/20 until I was 22. I would like to mention that I started showing symptoms of vision issues at the age of 20, and at the time they were of some concern but I didn’t realize how concerning they were until I turned 22.
At age 22 I started getting shuffled around doctors office after doctors office. I wanted a diagnosis and to know if I would lose more vision. My mom wanted to help fix me. I did not want to be fixed. I’m not sure exactly why, but I didn’t want to be fixed. I was fine with it. At least, I thought I was.
Truth be told, I needed a cane when I was 20/21. I’m day blind and it began putting me in danger when I was 20/21, and I would need a sighted guide (usually my best friend) during the day time.
A quick note on day blindness: In situations with bright lighting, mostly outside during the day, as the name suggests, I am at my most blind. My eyes just don’t know how to process light. They take in too much light. Don’t know why. But image it’s like a camera and if it takes in too much light and becomes over exposed, the photograph becomes distorted and almost white. Literally take a photo of outside and use a photo editing app to turn the exposure as high up as possible. That’s me. Try navigating in that. Also bright light causes me awful, intense, never ending pain. I have to wear sunglasses outside to minimize the pain. The darker the better, but even the darkest lenses don’t completely take away the pain.
Back on topic-
And at 22, with enough vision loss, I decided it was “okay” for me to get a cane. I’d needed it for two years, but I waited because medically and legally I couldn’t be considered visually impaired, let alone legally blind, even though I had a whole section of the day, literally half the day every day, where I could expect to be 50-90% completely blind with white vision the second I stepped outside.
Which is why I get so pissy at the idea of “legal blindness” and letting sighted people determine what is blind and not blind and who gets aide and who doesn’t.
I wanted to get a cane. My mom said no. I was giving into my blindness too early. We could still get a doctor to solve all my problems. There had to be some surgery (which terrified me) to make me see normally again. But I didn’t think a doctor could cure what was wrong with me, and I was still terrified to go anywhere alone.
School was some kind of hell that year.
Seven months after doctors noticed I couldn’t see 20/20 with correction anymore, when I was starting to see 20/50 with best correction, I had an accident.
I was walking through a parking lot at two in the afternoon. It was October. It was bright out because I live in Southern California. I was following a friend. My whole method of travel was to walk one step behind and one step to the left or right of whoever I was with and stare at the ground hoping I could see their shoes and to listen for anything important. Not safe. Very bad.
And the world went blank.
I couldn’t see a thing.
I knew where I was. There was a building in front of me and I knew that as soon as I was in it’s shadow I would see more.
But the curb came before the shadow and I tripped.
I fell without seeing where I was falling.
It was terrifying.
I was fine. Ish. Fine-ish. My knees were both bloody and swollen for a week. I had scars from that for eight months. My palms were scraped to hell. I was limping. Nobody saw the blood because I was wearing pants and I still started bleeding at my knees.
I went home less than an hour later. Saw my bloody knees and marched to my mom and demanded I get a cane.
She had already just had a panic attack. I didn’t know that. I don’t know what caused it, but it was good timing because for once she didn’t fight it. I ordered my cane. And two weeks after I ordered it, it finally came. And that first day I noticed that having it made me feel safer. I knew that (finally) I wasn’t completely helpless, at the mercy of whoever was with me and whatever circumstances I was in. I had a bit of safety to help me find all the things I couldn’t see but could get hurt on. Like curbs.
It’s been two years, to the day I think, since I got it. I had just gotten it before Halloween and was still getting used to it and how differently people treated me on Halloween night. Halloween in 2017, and now it’s the 28th of October in 2019 as I’m writing this.
So, what happened to me was I was waiting for the mourning period to be a period of depression.
But instead it was anxiety, and possibly PTSD.
Leaving my house was terrifying. Any time I was out in public I was hyper vigilant of everything happening around me, especially if I couldn’t see it. Loud and sudden sounds made me jump. I would tense up. I couldn’t think. Sometimes headphones was my only way to calm down.
That was my mourning period. But I didn’t understand that until a few months ago when I was writing a chapter from Ulric’s perspective (Ulric is my blind character in A Witch’s Memory, a novel I’m currently editing). In the chapter I was writing about the mourning period and how he experienced it. Depression would be very in character for him. And he already has PTSD and anxiety too.
But then I realized my anxiety disorder (generalized anxiety disorder) was my mourning period.
Actually, a lot of my experience with vision loss snuck into that story. Including Ulric fighting to get his parents to accept that he was blind and that he didn’t want to be cured because the cure had its own cost. And his fight to get his cane and orientation and mobility training.
That was my mourning period. I wish at the time I knew depression wasn’t the only sign of it. It might have led to me getting therapy or treatment earlier. But it’s too late to change that.
Maybe reading this will help someone else.
It’s getting late. I’m going to reread this and check for spelling errors, and then I’m going to post it before I chicken out. Goodnight.
The Case of a Blind Woman and Her Invisible Manuscript
By John F. Burns, NY Times, April 14, 2012
LONDON--When she went blind as a result of diabetes, Trish Vickers set out to fill the void in her life by writing poetry. Then she turned to writing a novel, her pen guided by a system of elastic bands stretched across the paper. With 26 pages written, and a plot that turned on a woman whose life implodes, she began to dream of finding a publisher.
Then the dream imploded, too. When her son Simon visited her at her home, near the town of Lyme Regis in the Thomas Hardy country of Dorset, she showed him what she had written, and he gave her the bad news: Every page was blank. Her pen had run out of ink before she began, and what remained was an empty manuscript.
Then came a twist in the story of a kind that would serve in one of the detective stories that have entertained mystery buffs for generations: Mrs. Vickers, 59, and her son turned to the forensic service of the Dorset County police.
After five months' work, done on her lunch breaks, one of the experts there, a woman usually set to helping solve cases of murder, arson and fraud, cracked the case, delivering a typescript of all the missing pages to the bereft author.
"I am so happy, pleased and grateful," Mrs. Vickers said in an interview with The Daily Telegraph. "The police also said they enjoyed the bit they read and can't wait for the rest."
A spokesman for the Dorset police said that the recovery of the text had been accomplished with a police technique that involves shining light from various angles on the indentations made in the paper by the pen--the sort of thing in detective stories that ends up sending the perpetrator to the high court, or the gallows.
"It was nice to do something for somebody, and it was nice to read the book as well," said Kerry Savage, the forensic specialist. "Fortunately, apart from one line, we managed to retrieve the whole lot."
A volunteer now visits once a week to type up new passages of the work, and Mrs. Vickers says she plans to send the finished novel to a publisher.
In the meantime, she has learned a lesson about her penmanship, and her memory. "I could remember the gist of what I'd written, but there was no way I could have written exactly the same way again," she said.
