Not sure if any of you have noticed, but I have not been around for quite some time. That is because I have gone blind. We still don’t know why, though we have some ideas, but that is not why I am using my speech recognition and narrator software to write to you today. I am blogging today because I want to tell you all about the days that I almost gave up. I wanted to give up writing, being online and do nothing but lay around all day and bemoan the loss of my eyesight and the loss of my faith in certain people.
Really, that’s the reason behind this post: loss. Back in February the pain that I’d been experiencing in my back and hip, from being injured in the Army, got worse and were only surpassed by the dizziness and pressure that I experienced in my head every day. When that dizziness and pressure turned into words no longer making sense to me—leading me to feel like I was becoming stupid—I knew that something was definitely wrong. The first time I lost my vision it was only for five minutes and it was more everything went completely white. I stopped in my tracks and immediately sat down, putting my head down and blinking rapidly, hoping against hope that it would pass.
I called the nurse manager for my former primary care doctor and left a message on her voicemail detailing that the symptoms were getting worse and I needed her to contact me.
That was about two months ago.
When blurriness and flashes of white turned into melted colors and finally to the morning when I woke up and was completely blind for two hours I prayed. I prayed to YHVH and I prayed to Jesus. I cried for my Granny to help me and desperately wanted to talk to one of my parents. I even considered calling my biological mother. I thought I was being cursed, punished for being transgender and gay. I thought it was because of my penchant for standing up against bullies, perhaps because I’d just had an extremely stressful time online only months ago.
I was grasping at straws.
When my sight returned I told my sister, Cherie, and we began stepping up trying to me in to see the doctor. Weeks passed and my periods of blindness extended, each instance becoming longer with less periods of blurriness or clear sight.
Then two and a half weeks ago I woke up and was totally blind. My sight hasn’t returned at all.
I’m not ashamed to say that I’m scared.
I’m absolutely, totally and completely scared shitless.
I have moments where I want to curl up in a ball and sob my eyes out, ask God what I’ve done wrong to deserve this treatment. I have moments where I want to throw shit around the room and destroy everything around me. I want to push everyone away, scared that this “curse” is going to spread and contaminate them as well. At the same time I want to gather all of my family and friends around me and be surrounded by support and encouragement.
I feel confused and scarttered and not just because of the fact that words don’t make sense to me all of the time.
Writing is harder than it’s ever been before and I’ve only recently realized that I can actually send emails and things, although I’m never sure if things are spelled correctly unless someone tells me. My narrator can read emails to me, in her monotone voice, and read the immediate screen to me so I know what my next action should be. I am back to writing, which makes me happy, but at the same time I recognize much more than ever before the people, the friends, the “family” who are no longer around.
I realize that my life can be filled with drama and very soap opera-esque. I realize that can be hard for some people to take… and because I have so much going on I don’t need people who are leaves in my life, who when the wind blows hard they disappear. I had some who as soon as something bad happened they disappeared. I Don’t need people who are like butter and as soon as the heat turns up they melt. I need solid people especially as I walk through this unknown terrain of being blind and not exactly knowing the cause of it all.
A lot of different guesses and opinions have been thrown around, everything from MS (multiple sclerosis) to stress to testosterone overdose—which is very unlikely as my T-shots have been monitored from day one—to diabetes. No one knows exactly, but everyone knows that support is needed, not just for me but for the people whose lives are being affected right now: Cherie, the Neiceling, and Chipmunk to name a few.
So to those of you who have been sending emails and tweets and Facebook messages and comments to me, my assistant Cinders, Lor or Cherie, even those of you who have been showing support to Chipmunk, thank you so much. It means a lot to me. Now that I know I can use my speech recognition and narrator I will try to be online more than before, but until my sight returns or my accommodations improve, it won’t be completely like before. Thank you, in advance, for understanding supporting and encouraging me, it is greatly appreciated.
Vicktor Aleksandr B