I’ve written before about how people like me, blind and with a severe often debilitating illness, are not represented in the media as more than tokens – if we’re represented at all.
Because of this, there are a lot of misconceptions out there about what it’s like to have a chronic illness and more profoundly, what it’s like to be blind.
I wanted to take the opportunity, through a series of posts, to share what it’s like to be blind. I want to clear up misconceptions, enlighten those who are unaware and provide a voice and solidarity for those who, like me, experience the world in a very different way than the average person.
I want to share what it is like to have a part, or all of, your body constantly rebel against you.
First let’s clear up what blindness really is. It is not, as most people assume, being completely devoid of vision, seeing only white or black nothingness. In some cases, it can have little to do with whether or not your visual acuity is the average 20/20.
Being blind encompasses a whole host of issues and truly the term ‘visually impaired’ is more appropriate. I use the terms interchangeably. They have the same meaning.
Not all blind eyes look the same either. Some people have eyes that wander. Some have eyes that don’t go anywhere. Some blind eyes are oddly shaped, etc… You wouldn’t know that because the main reason why people wear sunglasses is not to protect themselves from light, it’s to protect themselves from bullies who might stare or make fun of their non-normal eyes.
To recap, two of my brothers and I all have a mitochondrial disorder. Mitochondria are the part of your DNA that give your body energy. Our mitochondria do not work well or in some cases, at all. Mitochondrial diseases are debilitating, painful and in some cases deadly. They are also an enigma to doctors. They understand very little about the diseases and many doctors believe that no two people’s mitochondrial disease will present itself in the same way. This means that I’m likely the only one who has my particular strain of illness and both of my brothers have their own strain.
As one of my neurologists sarcastically said ‘YOU WON THE GENETIC LOTTERY! YAY!’
But what my brothers and I do share is blindness. When my brother Jake was born the doctors told my parents that he couldn’t see at all. Of course, this wasn’t true. He could see. He just couldn’t move his eyes. Neither can I. My eyes are paralyzed. We also share the trait of having ptosis – in laymen’s terms, our eyes do not open all of the way. This is partially due to the paralysis and partially due to our eyes trying to protect themselves from various factors – such as light, dryness or too much visual stimuli.
In this picture, you can see what I’m talking about. I’m not squinting. That’s just my face. By the luck of the draw, I’m a girl who’s pretty good with makeup so I know how to ‘trick the eye’ to deflect and detract from the ptosis but at the end of the day, I can’t hide what’s essentially written on my face. I’m blind and abnormal.
We also cannot see 3D images. Our depth perception is horrible. In fact, when I was a toddler doctors told my mother that I would never walk up and down stairs or ride a bike. I can walk some stairs, but this has become more difficult as my vision has worsened. Bleachers, however, have never been something I can navigate for some reason.
We also have very little peripheral vision – which means cabinet doors left open, tree branches and the like are major hazards.
My depth perception is worse than that of my brothers’, they can drive, while I cannot.
I have a tricky relationship with light, which I’ll get to in another post. Most often, even in my own home with the blinds drawn, I need to wear tinted glasses. Even when the sky is overcast or in stores with harsh lighting I need to wear the darkest sunglasses possible.
My eyes do not focus normally, so crowds and other activities that involve hefty visual stimulation are difficult for me. It takes me longer to focus and understand the information I’m taking in. If my eyes take on too much information at once my brain overloads.
Currently, my brothers both have cataracts that they need to have removed. One has already had cataract surgery on one eye. He is 41. My other brother is in his mid-30s. The average age for people with cataracts is 75.
As I said before, the average visual acuity is 20/20. Without any correction my vision is considered immeasurable. Even with corrected acuity, I see everything in a blurry filter and there is no way to correct the depth perception, light or focusing issues. Currently, correction for my vision is not possible.
When I was 15 I was told that my vision would be beyond help by the time I was 30. Well, it isn’t beyond some repair but every day I face new challenges and consequences from being blind. I’ll discuss them in a weekly post. If you have similar issues, please share in the comments. I want to start a dialogue and hopefully help people feel less alone and scared. And if you don’t have similar issues, I hope you keep reading these posts to learn more about what it’s like for people who aren’t as lucky as you are.