Ironically, given that this is National Poetry Month, this post is not about poetry (they can’t all be), and it may not be particularly poetic. I just finished and submitted one of the most personal poems I have ever written, and although I am thrilled that it is the month of celebrating poetry, and I am reading it voraciously, I need to take a couple of days away from writing it.
I recently had what I now call ( thanks to Katrin), a “sucks to be blind” day. I need them every once in a while; I got through it, I always do, and I emerged from it on the flip side of what blindness and RP have brought into my life.
I have read a lot of blog posts, written by visually impaired writers, about the benefits of being blind. I always scoffed at them. What could possibly be beneficial about having a disease that is causing you to lose the one thing that pretty much everyone is terrified to lose? I thought it was total bullshit. I was wrong.
I’m not talking about looking at life through some kind of fantastical lens. I am not suddenly of the opinion that having RP is a great thing. It isn’t. I would rather not have it. I would never have chosen it. But I do have it, just like I have blue eyes and a propensity for red wine. It is a part of who I am and it offers me new and varied ways of seeing.
The way I look at life isn’t static, it never has been. I live from an emotional place and most of my decisions speak to that truth. Emotions aren’t static. I am not one to turn my back on the darkness and live out my days in the light. I don’t strive for the top of the mountain. If I get there, great, but on the way, I want to see and feel everything around me; I want to be a part of the journey, whatever it brings, despair, bliss, rage, love, loss, laughter; it is all part of being alive. And, for me, RP is also part of being alive.
I used to take my dogs to a play group on Thursday evenings, but it disbanded about 6 months ago. The other day, I got together with some of the dog Moms, who I hadn’t seen in ages, so the dogs could play and we could all catch up. One of the other Mom’s, who is also a writer, reads my blog and asked about my vision and my writing and how it was all going. In that moment, it occurred to me how lucky I am. Instead of going to an office every day, I get to stay home and do the thing I love. I get to do this because of RP.
When you have a degenerative disease, it’s impossible to avoid thinking of loss, but if you allow yourself, you can also choose to see what is gained. I have the freedom to write this, in the comfort of my apartment, wearing my pajamas, pugs asleep next to me, because of RP. I am part of an inspiring and supportive writing community, because of this blog, which I wouldn’t have started if I didn’t have RP. It is beautifully ironic that what is propelling me into darkness, has given me the choice to see good fortune in a whole new light.
I believe that some things happen for a reason. People come into our lives at specific times that can’t possibly be by chance. We end up able to do things we wouldn’t otherwise be able to do, if it weren’t for certain challenges that lead us down certain paths. This might sound a bit out there , a bit nuts, but it sometimes feels undeniable. I am the youngest child and the only one of my Dad and Step Mom’s kids who live near them. I am the only one who didn’t finish college and who has never had a high power job; I am the only one with RP. And, I am the one who is here for my parents as they get older; I am the one who can be here for them at any time, the one who gets to spend time with them and really know them, because I don’t work a regular job. I don’t work a regular job because of RP.
Is this just me looking for a reason that I got saddled with RP? Perhaps. But, I can’t help seeing the good that has come into my life as a result of my disease. It will never fail to amaze me that what has led me to the most profound spaces of clarity in my life, is blindness.
I still don’t want RP. I don’t want blindness or Zelda. But, in some ways, because of RP, I have so much that I do want, so much that makes my life rich and beautiful. I am incredibly lucky.