I'm Making This Up As I Go

When the eye doctor filled out a certificate of legal blindness for me she asked if I had any questions.

Getting asked that felt like the new boss asking if I had any questions five minutes after hiring me. Where am I supposed to park? Where are the bathrooms? What was your name again? Which of my coworkers are cool and which ones should I watch out for? Do I bring a lunch from home? Where's the fridge? The kinds of questions the boss expects me to ask - work related questions - haven't crossed my mind yet. They won't until the next day, or maybe even the next week, after I've tried the work.

Yeah, I have questions. A million questions. But I'm so new at this blind thing I don't even know what they are yet.

The first thought that came to mind was Now that I'm not allowed to drive anymore how the hell am I supposed to get my car home from this clinic?

My second thought was I need to learn Braille and get a guide dog and a white cane and dark glasses, fast!

That seems really stoopid now but the stereotypes were all I had to go on. I had only met three blind people in my life and had never spent more than an hour in their company. No one in my family is blind. No one I knew was blind. I had no idea how to be blind.

Almost two years later I'm still trying to figure parts of it out.

In my first blog post I mentioned how we're prepared for most situations in life because we've seen Hollywood go through them. We know what we're supposed to say and do. But the only things Hollywood taught me about blindness were dark glasses and white canes. Those are accessories, not guidance. They're Hollywood shorthand for telling the audience this character is blind. But identification isn't the same as instruction, and knowing how to dress blind is a far cry from knowing how to act blind.

There isn't an instruction manual. There isn't a blind Aristotle or Gibran or Freud to tell us how to think or act or feel. If you're lucky enough to live in a big city there's probably a support group but you can't drive yourself there. And do you really want to meet a bunch of strangers whose only commonality with you is blindness? Would they even accept you since you've still got so much functional eyesight?

Most of us are on our own.

Religions come with commandments and beliefs. If you're in one it's clear what you're supposed to believe and how you're supposed to behave. Blindness isn't a religion.

A caste comes with expectations and a sense of belonging. If you're in one your duties are understood and your place in society is known. Blindness isn't a caste.

Even a dance club comes with unwritten rules everybody knows. You can sing along with the song, you step in time with the beat, you can cheer when the song ends. Blindness doesn't even have that.

It's more like Tom Hanks in Castaway, alone on an island with nobody to help him figure out how to live.

More than anything I wanted role models to show me the possibilities during those first few weeks after the diagnosis. Hollywood reduces us to stereotypes so we think that's what lies in store for us, because we've never been shown any other possibilities.

But blind role models aren't mainstream. I don't have any. I've had to make this up as I go.

In some ways it's liberating. I've never felt as free in my life as I do now. Part of that is because I don't have a job anymore, but part of it comes from not having any expectations for who I'm supposed to be. There's no pressure. Accountants are supposed to be boring, Canadians are supposed to be polite, scientists are supposed to be absent minded, doctors are supposed to be smart, but blind people? Nobody knows what we're supposed to be like so there's no expectations for me to be anything. I enjoy that part.

But in other ways it's incredibly lonely. Sometimes blindness runs in families but otherwise we are few and far between. Most people we meet will never understand what our lives are like. We're often without a sense of purpose. On really bad days we even feel we somehow deserve this, like we're being punished for an unspoken flaw in our character.

We make it up as we go. Not as a community, but individually. We each decide what it means to be blind, how to act blind, how to live blind, how to feel blind. We do it on our own because it's the only option most of us have.

But once we figure it out we have a degree of authenticity most people will never have. Our direction in life wasn't handed down to us by a religion or a caste or a peer group. We made our own decisions on how to act and how to feel because we simply had no other choice. We are who we are, not who we're expected to be, because nobody knows what blind people are expected to be.

We are free.

If you're going blind and looking to this blog for guidance, look to yourself instead. Don't be like me, be like you. You'll never be authentic until you be yourself. Blindness is a mixed bag. There are good parts mixed in with the bad. The freedom available to us is good. So is the authenticity. But they'll stay in the bag until you take them out and claim them and really make them yours.

Chart your own course, captain your own vessel. I know it's lonely but freedom always has been.

Be free. This is blindness' gift to you. Or maybe its apology.

Either way, be free.