Remember when we were kids, and we’d flip our hands onto our faces and make the Batman mask? Still makes me laugh every time. I’d race into a room shouting “I AM BATMAN! UNHAND THAT POOR LADY NOW!” to imaginary villains robbing old ladies. Then I’d imagine the old ladies giving me the homeless kitty they had just found wandering in the street as a reward for my bravery. (What? I was seven. Kitties were the best rewards ever to me back then.)
Can you still do it? Go ahead and try. (You know you wanna!)
Looking through the “mask” take a look around you. (Mobile users in public. You should totally do this. After all, do you really care what these strangers think of you? You don’t. If anything, you’ll appear very confident and interesting.)
Why am I asking you to do this? As you’re looking around, notice how limited your field of vision is. You can see clearly in front of you, but try walking to the bathroom without looking down, and you’ll probably trip. Like I do on just about anything in the floor. That limited field of vision is how I see the world every day. And y’all, it’s a beautiful sight indeed.
On a Twitter rant the other day, I accidentally confessed my secret that I’ve never quite fully explained to anyone really. Maybe it’s pride, maybe it’s because I don’t want pity. I loath your pity. Take your pity elsewhere. Leave your support and ice cream.
Hi! My name is Mary Beth, and I have Usher’s Syndrome. *waves*
What is that? Easiest way to explain it is that it’s similar to macular degeneration, only I’m losing vision from the outside in. Kind of like this: *makes Batman mask* Everything inside the circle, I can see with 20/40 vision (corrected with glasses). Everything on the outside? I can’t see clearly. It’s blurry/black and glasses can’t correct it. Also I’m severely hard of hearing (Woot hearing aids!)
I’ve had it my whole life, but we didn’t know until I was in high school. How did we find out? My Mom was taking me to get my driver’s license. We had to get there early, so my Mom had me drive there at 5 am. I pull out of the driveway, like I had a million times at in the day but once I reached the end of the road, I realized I had no idea where to turn.
“Mom. I can’t see where to turn. It’s too dark.”
“The road is right there. Just take a right. You’re fine.”
So I took a right, and promptly crashed into my neighbor’s 6 ft tall hedge. (It’s ok to laugh.)
Photo: Normal night vision on the left. Night blindness on the right.
We thought it was just general night blindness, but an eye doctor mentioned the possibility of it being more serious. Some 20 different specialists (I swear Doctors sent me to their friends because it was such a rare case), until they all decided to send me to a specialist in Boston. So while my friends were on their senior year spring break, I had a doctor telling me that I was not only unable to join the military as planned, that I would also lose my sight completely before 25.
I was devastated. I barely made it through the end of high school. My friends were gearing up to go to college or join the military, and I stopped caring. Finally my best friend had enough of me moping (She’s a Marine from Brooklyn, she doesn’t accept excuses). She said “Look. Wearing hearing aids never made you think your life is over. Why is it over now?”
So I saved every dime from my job, and graduation fund, then bought a plane ticket to Boston. If I was going to go blind, I was going to travel and volunteer while I could still see. I almost changed my mind at the airport in front of the gate. My bestie threatened to kick my ass from Atlanta to Boston if she had to drive me there herself. (Fear isn’t a good excuse to her.)
Independence builds a lot of confidence in yourself. Having 9 other roommates in a 4 bedroom apartment makes you very aware that people genuinely don’t mind helping out. And those who do mind? They were never your friends to begin with.
Each year I’d move to another city, seeking summer jobs in remote parts of the country (Rolla, MO anyone?) and chasing adventure.
Eventually I married my college sweetheart (Completely deaf) and we navigated the full extent of my abilities. I even got trained to drive with my low vision by a specialist and drove, albeit very carefully and on side streets like a Granny. Getting my driver’s license at 25 felt amazing!
Watching your partner go blind is difficult. Watching your partner go blind when you are deaf, straight up terrifying. Eventually my then husband couldn’t take it anymore and asked for a divorce. Great guy, but he didn’t have the stomach for the life I was going to lead one day. (The anticipation of suffering is so much worse than the suffering itself.)
Freshly divorced, I started dating again, but never told anyone about my vision. I thought the hearing aids were a hard sell alone, but the going blind thing? Surely that’s a no go. (Now I know that any potential partner who sees this as a defect has defected thinking.)
I stopped driving in 2014. My vision started fluctuating, and I started feeling anxious. My greatest fear is that I’ll accidentally hurt someone. I’ll walk or take Uber instead.
By now I’m sure you have questions, so I’ll go ahead and answer them the most common questions I get asked here:
Q: You’re so courageous. How do you wake up every day knowing you might not have your vision one day?
A: The possibility of coffee and bacon gets me out of bed very easily. (I’m not courageous. I just do what needs to be done just like you. If a water pipe burst, you don’t just stand in the water, you call a plumber. If my vision prevents me from doing something, I find a way around it.)
Q: How do you cook?
A: I find kitchens to be helpful here. (Did you know that there are deaf-blind chefs all over the world. Millions of completely blind people cook for themselves daily too.)
This is my most commonly asked question:
Q: How do you have sex?
A: Loudly and frequently :3
Q: Do you use a cane and wear sun glasses inside?
A: I’m trained to use a cane, and know how to read Braille, but I use neither at this time. I do have special sunglasses to wear outside since retina burn is a real thing in my life since my pupils stay dilated most of the time. Makes transitioning from brightly lit spaces to dark spaces difficult without sunglasses.
Lately I’ve been considering buying a travel cane for crowded venues and grocery stores. I’m tired of bumping into people and having to apologize a thousand times. People get straight up mad at you. My sister once gently suggested I at least used one in public, like concerts and conventions.
“I know you’re blind, but they don’t. This gives them a heads up and protects you.”
I’m terrified of this. I can typically hide my low vision by explaining it away as not paying attention, but the truth is, it’s about that time. (I’m actually debating trying this out at MagFest in two weeks, but again. Terrified. I haven’t even bought a cane yet. Where do you buy them at? Can I even afford one?)
Doing this will change how people see me. It will change how I see myself. And worse, it means, I’m losing time to make art.
See I just discovered I love painting. I just started back in October and I’m not bad at it. Here’s a few I made since starting. (The girl in the umbrella in color was my first. I found a video on youtube and went for it, the rest are originals.)
The one of the boy walking in the rain of color? That’s the children’s book I’m currently writing: The Boy Who Was Afraid of Color.
This is my passion. This is my dream. Creating art and telling stories. And as of Friday, this is now my full-time job. Making as much art as I possibly can while I can.
See the trouble with Usher’s Syndrome is that your vision gradually decreases as time goes by. While there’s no specific timeline as it varies person to person, my eyes are tired. I can feel it. Some days it’s harder to see than others. It could be a year, it could be twenty. The universe may bless me and let me keep my current vision until I’m in my 70’s. But those numbers aren’t guaranteed, just like my possibility of living.
So I left my full time job, took a part-time one and I’m taking the leap. Deaf, blind and possibly bat-shit crazy, we only live one life and I plan to do so loudly. (Did I just yolo?)
You can check out my site here: http://www.sugarbeth.com. I’ll eventually get around to updating it to reflect my newer paintings.
In the meantime, you can also like my Facebook page: https://www.facebook.com/sugarbethstudios, follow me on Twitter @dammit__woman and/or @sugarbethstudio.
Want to support my art? I’ll never say no to a cup of coffee (or a commission!) 😀
Feel free to ask any questions below. It won’t offend me and I’ll answer as honestly as possible.
Now go live, love and make damn good art!