After an extended bout with bronchial pneumonia, my life turned upside down. I woke up one morning and found I could not see. My gift of sight was stolen from me, leaving feelings of isolation, loneliness and fear. At first I felt completely lost. Denial sets in as you first think it will simply go away like a common cold. But it didn’t. Nights are days. Days are nights. You live with it 24 hours a day. Vision loss can bring profound challenges along with moments of intense frustration and discouragement.
At first I was very sad about my loss, but then I made a decision — after going through some very dark moments (excuse the pun) — to go on with my life. When you’re faced with vision loss, you can either engulf yourself in self-pity or find ways to overcome this obstacle and continue to live. I believe as soon as you acknowledge this, work to accept new gifts, not accept limitations, and move on with your life, the better off you are. With vision loss you become a somewhat different person. How could you not? You learn to navigate by learning new skills. Eventually you adapt to living a new life.
I understand sorrow is a natural feeling, but when I first lost my vision, it was much harder for everyone else to adjust to it than it was for me. The hardest part is people treating me differently. Strangers have even asked me what’s “wrong” with me. I just say let’s talk about what’s right with me. People who don’t even know me will often start a conversation without introducing themselves. They tend to get hung up on all the wrong, personal and inappropriate questions such as, “Have you been blind since birth? What caused your vision loss? Are you completely blind? Will you ever see again? How do you use that ‘big stick’? How do you get around? Can’t glasses fix it? Isn’t there an injection for that?” And my favorite, “Gee, you don’t look blind.” Really? This is insulting and frustrating. I usually respond, “Well, you don’t look sighted.”
I now have a white cane, which I love. Although I still bang into things, I can’t imagine traveling without it. It is how I now perceive the world. My self-consciousness about it is gone in exchange for my increasing level of mobility.
I’ve been asked, “Don’t you wish you could see again?” This is a difficult question and hits me on many levels. People of course expect me to immediately exclaim “Yes!” But I’m finding it increasingly hard to answer. It’s been almost a year at this point, and I can’t do anything more about it apart from what I’m already doing. I also find the question somewhat offensive and subtly biased, coming from a sighted person who I feel is really asking me how I could possibly go on with my life while being blind.
Yes, early on I desperately wanted to see again, because that’s all I had ever known. I suspect I was dealing with some level of denial and anger. But now, I’m finding I would answer the question differently. I live in a very different world and have learned a lot. I don’t look back, feeling as the lyric in the jazz standard “Here’s to Life” says, “There’s no ‘yes’ in yesterday.” I don’t feel like a broken machine that has to be “fixed.” I guess it’s about coming to terms with my vision challenges and accepting what is.
Now that I have accepted my blindness, I’m beginning to feel joy and happiness once again as I continually learn to adapt. I do everything I did before — work as a writer, perform as a jazz musician, listen to cool books on tape, walk fast with my new longer white cane, and sail big fast boats, among many other cool activities. I’ve also met many new and wonderful friends I never would have met before.
I have new windows of perception opening up to me every day. I believe having meaningful relationships with people is what makes life worth living, not whether or not one of your senses works the same as everyone else’s. I’m the same person I was before, I just happen to not be able to see with my eyes. It’s only one aspect of who I am. My goal now is to help other people who are perceived by others to have a disability — to communicate that we just have a different ability. My gift of sight may be gone, but my gift of vision is just beginning.
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