Living With An Invisible Disability

I’d been wandering around the Vegas airport looking for the international terminal for about an hour when I gave up and asked for directions. The employee who helped me was incredibly friendly, but became quickly and obviously frustrated by what she believed was my complete inability to comprehend simple directions. She kept pointing toward the huge, glass, double doors in front of us, telling me the building, “RIGHT THERE ACROSS THE STREET,” was international flights, “CAN’T YOU SEE IT?” she finally sighed.

I couldn’t see the building. I didn’t know I couldn’t see the building because, well, because I’m nearly legally blind WITH my contacts in or glasses on. How could she have known that? I hadn’t told her.

I often don’t tell people.

At work a few weeks ago I asked my boss a question from across the room. He either didn’t remember or didn’t realize that I can’t always see a head nod from across the room, and he nodded his answer, “Yes,”

Believing he hadn’t heard me, I repeated my question again and again until he jokingly called out, “Are you blind or something?”

I felt the open floor plan of the office close in on me as I imagined my coworkers staring, and laughing, and nodding their heads with mock exaggeration. I couldn’t breath, or think, or move.

A coworker and good friend of mine noticed my reaction, and asked if I was okay.

“My vision’s worse than usual today,” I told him, “I didn’t realize it until the mgr. teased me just now,”

“Why don’t you just tell people?” he asked gently and directly.

He can’t know how terrifying that idea is for me. I lost my vision sometime in 2015-2016. I don’t know exactly when because I was brown out to black out drunk for the majority of those years. My dependency on alcohol led to multiple seizures a week, and one or some of those seizures left me with permanent damage to my optic nerves -- the nerves that connect the brain to the eyes. My eyes see as they always have -- perfectly with the help of corrective lenses -- but my brain doesn’t register what my eyes are seeing in a normal way. Some days are better than others. Some days are worse. Color combinations, patterns, depth, height, and lighting effect my ability to see. It’s not as easy as — how bad is your vision using the 20/20 model ?— which is what everyone wants to know. It’s hard to explain, and it’s hard for people to understand.

I get asked regularly if I just need to go to the eye Dr, or need a new prescription: Nope. It’s permanent and irreparable.

I get asked why I wear glasses: Because it’s neurological; its my brain not my eyes.

People have told me I don’t look blind, and that I, OBVIOUSLY don’t have vision problems because I’m wearing glasses: I can’t talk to these people. Not today, not any day. If I were to respond, it would be snarky, and hateful, and sound something like, “WHAT…EXACTLY…DOES A VISUALLY IMPAIRED PERSON…LOOK…LIKE??? YOU F@#%&NG MORON!!!!”

I’ve been told it’s my fault: Yes, I know. Thank you. I’m just glad to be here.

A lot of people ask me to describe what and how I see things: This is an inquiry I’m happy to oblige.

So, why I don’t just talk about it or tell people? To be blunt — fear and ego.

I’m afraid people will treat me differently:

I’m afraid that if I tell people they’ll feel like they need to be careful with what they say and how they act. I’m afraid they’ll apologize for pointing out things in the distance and then realizing I probably cant see it. I’m worried people will feel uncomfortable when I say I can’t or didn’t see something. In order to avoid this discomfort I often pretend, nod, smile, or chuckle instead of acknowledging that I can’t see what they’re referring to.

Because my vision problem isn’t something anyone would notice without me explaining it, I also fear that people will think I’m exaggerating in order to get attention.

I can’t always see your body language or facial expressions. I can’t see your computer screen. I can’t see the screen of your phone unless I take it out of your hands and put it into mine. I can’t read menus at quick serve restaurants and coffee shops. I’m afraid that if I mention I can’t see something, ask you to describe it, ask you to blow up your screen, hand me the phone you want me to look at, or read something for me you’ll think I’m trying to get attention. In order the avoid this discomfort, I often pretend, nod, smile, or chuckle instead of asking for help.

I’m afraid of being a burden:

I have a hard time asking for help. With anything. Ever. I like to be seen as a strong, independent, self sufficient woman. Someone suggested recently that perhaps by taking my vision The Universe was doing something for me that I couldn’t do for myself — it put me in a position in which I have to ask for help in order to do simple things like order food, read street signs, or be driven to and fro.

That person is absolutely right. I’m now being forced to ask for help on a regular basis, and it’s good for me. I am not (much to my dismay) a superhero, and I’m not perfect. No one is. We need each other, buuuuut I have an enormous fear that people will find me and the things I’m no longer capable of doing on my own to be a burden.

Why share this post? I sometimes feel isolated, afraid, and lonely. People communicate through body language and facial expression. I can see general movements, but I often miss or misunderstand what is being communicated. When my fear and ego keep me from sharing with you that I think I’ve missed something, I feel separate and less than. When people discuss or laugh about something I can’t see, and I don’t speak up and ask for an explanation, I feel separate and less than.

Whether it’s a disability, or simply not feeling comfortable communicating your own fears, needs, and desires, I imagine I’m not the only person who ever feels separate or less than.

I’m learning that speaking up doesn’t cause people to look at me like a burden, or incapable, or less than. I’m learning that people love me, and want to help. I’m learning that not sharing my needs and not asking for help KEEPS people separate, and therefore deprives them of the opportunity to show that they care.

Obviously there’s a line. I’m not going to run around crying at the top of my lungs every time I miss something. But, I’m learning that it’s okay to express needs and ask for help. Now and then. ;)