I don't drive very often, I don't own a car. I never cared about getting my driver's license in high school (it was after my 18th birthday when I got it). I honestly hate driving.
Between 2004 and 2011, I drove at least 40-50 miles a day, first to Niagara University, and then to my first job in Elma. In 2009, I had my first flare of uveitis. My vision did not decrease that much, so it wasn't a huge issue and I was still able to drive. In 2011, my office moved two blocks from my apartment, so I no longer had to drive to work. My uveitis continued to come back, seemingly every spring and fall. Still never too bad. It was manageable.
I have two environmental degrees. I was called "The Queen of Green" at my old job. I moved Downtown to limit my environmental impact. I am an urban planner committed to building a better world through my work and my actions. I am on the board of a nonprofit which advocates for alternative transportation modes and runs our bikeshare program. I work for the nonprofit Business Improvement District responsible for establishing my downtown neighborhood as a neighborhood where you can live, work and play. I am committed to all of these things....i have never been one to just talk to the talk, I insist on walking the walk.
Those are all reasons I give when I explain to people that I sold my car in 2011...they're solid reasons. They make sense to people.
Here's my secret, the deep dark truth I've don't think I've ever told anyone. I don't even like to admit it to myself. I sold my car in part because I was terrified to be reliant on it if the uveitis ever got bad. My first "I'm going to try riding the bus" bus rides were to watch Sabres games at my favorite bar. Everyone thinks it's because I was being safe and not driving drunk. While that's part of it (driving drunk is stupid and I do not condone it), I've never been a heavy drinker, and those first bus rides were actually taken because my eyes were flaring. While my eyes were was never previously so bad that I shouldn't be driving -New York State has a fairly lenient vision requirement, you don't have to have 20/20 vision to drive. But I started to use the bus first because of my eyes.
It all changed September 2017. I had a busy day of meetings the day before. My eyes hurt, but I thought it was because I was tired and stressed. I woke up that morning unable to see. After heavy steroid treatment for six months and eye injections, my vision was 20/50 with my glasses on. Not back where it was, but in a manageable range, and fixable by new glasses lenses. I had an appointment with my eye doctor to finally be able to taper off of the steroid eye drops, to finally be back on the path towards new glases and regular vision. You can't get new glasses while on the steroid drops because there's so much fluctuation with the vision, it's not feasible for me to spend all the money on new glasses that might not work in a day, a week, or a month.
Then, the flare came back. Instead of getting to taper off of the eye drops, I had to increase them to every two hours. The past two weeks have been tough. While not quite as bad as last September, it's a pretty significant vision loss. This morning my vision was 20/200 in my left eye and 20/125 in my right. Legally blind is 20/200. Normal vision is 20/20. My vision is currently not correctable to 20/20....meaning right now, if I get new glasses, I still will be moderately visually impaired.
My driver's license expires on June 8th, my 35th birthday. It cannot be renewed at this time, because I cannot pass a vision test at this point. My eye doctor will not sign off, and rightfully so. As of June 8th, I will no longer be able to drive a car for the foreseeable future.
You'd be amazed at all the things you can accomplish. I had to Chair our professional organizations awards program last week. It required creating a script, a power point presentation, awards certificates, and a press release. Taking the bus to a suburban plaza Office Depot to buy the paper on which to print the certificates. And then presenting the awards with a script written at 30 size font that is still really hard for me to read. I did it. The last two weeks, I had been preparing for a big meeting we had at work yesterday. I am so proud of the work I have accomplished. I have made maps that average people cannot make. I have analyzed survey data from 4004 survey responses in excel tables that would probably scare most people. I haven't missed a single day of work (and actually worked a bunch of overtime, because this stuff takes a lot of time!) Visual impairment will not stop me.
So there's still so much I can do. I can navigate my city easily using public transit sighted or no sight. So why do I feel so bad about not being able to drive? I hate driving. I've never been someone who enjoys it. But it represents so much more than just driving. Riding the bus because you choose to felt empowering because I was putting my values into action. Now it just feels like the bus. This is the first step into a world where I honestly could actually go blind. It's terrifying.
Visual impairment is weird. I can't read menus at places that just have a sign up behind the counter. I go to Public Espresso nearly every day. For all I know, their board says "Angela, please stop coming here, you are annoying" (I know it doesn't....love you guys!!) It's difficult when you're somewhere new to be able to order coffee or food or whatever. Going down steps is a major challenge - depth perception is really hard when things are blurry and steep steps that are all the same color make it really hard (cough cough...I'm talking about the subway system here!) Uneven sidewalks and sidewalks without curb cuts at intersections are very difficult. It's hard for me to know when my cab, uber or lyft has arrived.
I can't make out faces of people standing on the sidewalk near me. I feel bad for all the people I've seen across rooms, or passed on the street, that I've ignored over the last seven months. I don't mean to, I just really honestly can't see. It's really hard to be in groups when you know there are people you should know, such as a networking event. I feel like I'm missing saying hello to someone that I really should say hello to. It gives me major anxiety and is far more upsetting than it should be. It's weird. Some people, you can recognize easily from across the room by their height, their hair, their ears, their glasses. Some people, you know by their voice. But some people, you just can't place. I've had a few people actually talk to me that I'm not entirely sure that I knew who it was in front of me. It's easier in smaller groups - like my work meetings, where there's a limited number of people it could be, and I know all of them, so it's easier to narrow it down.
I'm terrified to live life as a visually impaired person. They don't know why this keeps happening. There isn't a clear solutions for how to make it stop. I have a colonoscopy on June 14th to try to see more of what's going on. And then maybe we can talk about starting a new medicine or something. And then insurance has to approve it. It could still be months before I have any answers. I'd give up my colon to be able to see again. Hell I'd give up a lot more than just my colon to be able to see. I'm exhausted. Isn't two years long enough to be unwell? Two years of my body failing me? I'm so done with this. May 19th was World IBD Day and I couldn't even talk about it. I hate my colon more and more every single year. The motnh of May is actually also Healthy Vision Month. Awareness that I need to spread, because at least I can use what happens to me for something I suppose. If I can let one person suffering know they're not alone. If I can have one person get their colon screened and it prevents all of this from ever happening. If I can convince one person to donate towards research for cures. Because life with my IBD is so much more than you'd ever imagine.
