I am 30 years old and going blind from retinitis pigmentosa. I was diagnosed at 9, and it was mostly just difficulty seeing in the dark. At 25, I started seeing "hallucinations" of throbbing floaters in my vision from my brain attempting to fill in gaps of vision and it was becoming so distracting I went to my neuro-ophthalmologist. I was told I had to stop driving and have lost almost a third of my peripheral vision. While I live and worked in the city, losing my car was not an interference to my job, but a brutal destruction of freedom and independence, especially as a fan of muscle cars.
In 2006, I had cataract surgery caused by the R.P. Ignorant, flip co-workers called this, "getting Lasik on the company dime" with no understanding of my plight. By 2008, my left eye is all but useless, and I'm constantly tripping over children, and slamming into street signs or poles in the sidewalk. In 2008. I decided to see the world expert in R.P., in some kind of hopes of ... I don't know. In short, I was basically told the same thing, and that I have about a decade left in my right eye. This sent me into a tailspin of (even more) depression and drinking and manic, stressed-out panic all the time. This led to massive headaches, and I decided to go to the hospital because they were so bad I was becoming dissociative. My blood pressure (normally good) was a constant 260 over 140, and I had to be put on a drip, and a couple days stay.
Then in 2009, the company where I've worked for seven years got bought out and they closed the office. Since then I've worked from home. In spring 2009 my five-year-long relationship with my girlfriend ended, mostly due to her complete inability to communicate anything and instead just refused to talk with or sleep with me anymore. She would later just admit to being afraid how I would react to anything she had to say, and never wanted to commit to anything. She wasted five years of my life, with nothing but two-faced lies and told me to my face she thinks she can do better and she would be settling if she stayed with me. She also told friends she doesn't want to take care of someone (my eye thing). For someone whom I considered my best friend and partner in crime/life, this was devastating.
Anyway, I am just at my wits' end. For a year now, I go weeks and months without ever talking to anyone. I have no friends, no partner, no world, no office even to just get out and go somewhere. I work from home, and every day hide my hatred and disdain for this soul-destroying employment.
The future is never going to get better. The only thing I have to look forward to is going blind, and more lies and pity and deception from people. Most people get to see the light at the end of the tunnel, but I only see more misery. I feel the whole world just expects me to just shut up and take it. And yes, I understand everyone is expected to get by in this world, but I'm pretty fed up with the whole game. I've become so angry all the time and am just sick of putting up with the world expecting me to sit down and shut up and play the cards given. No more happiness, no more fun. I thought it was just a phase I had to snap out of, but it's been over a year.
Dear Going Blind,
I am so very sorry you are going blind.
It is something to mourn but it is not something to throw your life away over. It is something that has come to live with you and you must move over for it on the couch. It won't go away and it won't listen to reason and it eats your raisins and your cereal. It drinks your milk and leaves the carton out but there is no power on earth you can call that will make it move into the next apartment. It has come to stay with you.
Blindness has come to stay with you. It is your companion.
It has something to teach you but for me to say that may seem almost to insult you, or to be bland and preachy, so I say only that annoying people and tragic loss both have something to teach us. Of course we don't want to listen. Who wants to listen to blindness? Who wants to listen to an asshole?
But here is the thing about your dwindling store of choices. Bad stuff happens to us for no good reason. This I know. Bad stuff happens to us and limits our participation in the world, or alters our participation in the world, and forces us to adapt. So we change. If we resist change, if we refuse to adapt, we are in for a world of hurt. If we resist what the world brings to us, we are asking for a fruitless battle that we will eventually lose. So if we can think straight for a few minutes we look ahead and see that this is a battle we are not going to win so we put down our arms and see how we can live with it.
You're not going to win this one if you fight against what is clearly beyond your control. So you have a choice of accepting it gracefully or fighting it. Changes will come to us. The ultimate change will be death. But before that there will be other changes.
There's a person in the treatment room where I go every day for radiation. Every day I ask her how she is and she says, "Better than some, worse than others." We exist on a scale, in a continuum. There are people worse off than us. There are blind people who have lost limbs too. There are blind people who cannot walk. There are blind people who cannot think clearly enough to write a letter.
You have many, many gifts.
You can fight this thing or you can make up your mind to accept it and see where it is taking you and possibly respond to it by trying to do some good. You can help other people who are going blind.
Let me now say some things that are a little impressionistic. The world is a blindingly beautiful place. It blinds us to its true beauty. The beauty of the world is not just in our perceptions of it. Its beauty is in how it holds us in its grasp. We are in the world, embraced by it, surrounded by it, held to it by gravity, and no blindness or deafness or infirmity can throw us out of its orbit or cast us from it; we are still wedded to the world. We must learn to feel this intimate motherly connection. Some of us ignore it as long as we can, preferring to live up in our heads until the very last minute when we are forced to the earth by illness or violence, returned, finally, to the earth in a ritual of farewell. But some of us are forced early to confront our earthboundness, our subjecthood, our mineral belonging. We are forced to accept that we are subjects of this great, vast globe.
I am not saying it is a gift and you should feel grateful. I'm saying it has arrived and you have some choices. I am saying the facts are the facts and you have leeway how you view the facts. You can choose what to do about this. Your choice will define how happy or unhappy your life is.
We know that people who choose to use their misfortunes to be useful to others find self-worth and self-forgetfulness. (Or do we? See Stephannie's Open Salon post.) So how can you be useful? Well, to start with, you are arriving at a place many people have already been, but many others are yet to arrive. You can be helpful to new arrivals. They will have questions. You can say, yes, I went through that at first, and here is what I did. You can direct others to the appropriate rooms. You can keep them company while they wait for their appointments. You are part of this thing now, this world of the blind, this world of shared circumstance. You can be useful to others.
We are handed these things. We don't know why. But we see what we can do with it. See what you can do with blindness. It is your new, strange friend. Let it walk with you.
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