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.
April 4, 2018 at 8:39 am
We all have things to be grateful for if we only take a look and see them, I am grateful for my life. And I know that in the end I am very lucky to have the family I have.
April 4, 2018 at 8:54 am
Not as lucky as I am, my love!!!!!
April 4, 2018 at 8:42 am
I understand where you are coming from. I have days like that too, but for the most part I’ve come to appreciate the things I always took for granted and don’t fret over a lot of trivial things that I didn’t consider trivial before. It’s funny how one’s perspective changes when something fundamental rocks your world
April 4, 2018 at 8:59 am
You are so right Steve. I can’t tell you how much I admire your strength and your attitude toward everything you face. It has been a struggle for me, and I know you have your struggles as well, but you really are such a strong guide for so many of us. Thank you!
April 4, 2018 at 9:53 am
And folks say I have a rosy outlook! 🤣
Susan, you’re just like me, with good days and bad days. Sometimes I can face the world with the gusto of a thousand rushing stallions and some days those stallions are running over me. But, most of the time, I can appreciate the beauty of the race.
I can’t say I can imagine what you go through, but I can tell you that nobody I’ve ever known deals with adversity better. Your heart is gold. Your will indomitable. You are a rock, to all who know you.
I am so grateful to have found you, and all these peeps we call a tribe. Your strength gives me strength, and I am grateful for this post. Is it poetry? You bet it is. Poetry inspires, elucidates, and challenges us. You, Susan, are poetry, and so is everything you write!
April 4, 2018 at 11:20 am
Tom, I don’t know how to thank you. How do I express gratitude for all the ways you make my life better, richer and fuller? Knowing you, learning from you, makes me a better person. You raise me up and help me grab onto hope in ways I never have. Every time you comment on my posts, I am a crying mess and I think you can’t possibly be writing about me. You have helped me see good in myself and there is no way I can appropriately express gratitude for that. But, I will keep trying.
You give me strength and new ways of seeing. I am grateful for you, for your friendship and your support. Thank you to the moon and back, my friend!!!!! You are the heart of us all!
April 5, 2018 at 9:06 am
You are welcome, my good friend, and sorry for all the tears! But at least they’re good ones. 😇
April 5, 2018 at 9:29 am
Definitely Good Ones!!!!!!!
April 4, 2018 at 5:32 pm
❤️❤️❤️ unspeakably beautiful outlook on your journey and it’s mountains, valleys and meadows.
April 4, 2018 at 7:55 pm
❤️❤️❤️ thank you Lovely Lady!
April 5, 2018 at 7:50 am
Thank you Rita! Waking up to read this had made my day!
April 5, 2018 at 8:22 am
I’m so glad ❤️❤️
April 5, 2018 at 5:28 am
Thank you so much for sharing. Regards
April 5, 2018 at 5:29 am
Susan, this post hurts my heart but also warms the hell out of it. You are a fucking rockstar – you know that, right? So much I admire you. If it were me, I just don’t know if I would handle it as gracefully as you do. To have this kind of perspective and strength and acceptance says so much about you. RP has forced you to face adversity and adapt to a whole new world, one you would have never chosen, but still, you find the beauty and the light in the midst of all the darkness. Not everyone has that ability or even wants to see something other than what they can’t. You simply refuse to surrender and are soaring high above the clouds, evolving and embracing the gifts that have been bestowed upon you. It’s an incredible thing to watch. I feel blessed because of RP; it brought you into my life and being a part of your story is something that will undoubtedly leave me forever changed.
April 5, 2018 at 8:05 am
Oh Tanya, I don’t know what to say. Whatever I say won’t feel like enough. But, Thank you and I love you and I am so grateful that you are in my life!!!!!
April 7, 2018 at 10:23 am
Me too, Susan!
April 18, 2018 at 6:17 am
I’m creating time this morning to read your April blogs. I’m thankful now to have a job that starts at 10am and a 10 min. drive away; it allows me to relax, have breakfast and a few other things too – like reading your blogs which I LOVE. Though I don’t like living in Seattle, it has brought me SO MUCH personal growth that I am fortunate to continue to receive. Thank you for sharing your experiences and appreciation of what you have in your life! XO
April 18, 2018 at 7:42 am
I Love you Lady!!!!! Thank you for your love and support!
May 3, 2018 at 2:15 pm
Holy god this is good! You are incredible, my friend. What an excellent post. Ii have been moping about feeling sorry for myself all day and now I’m crying at my desk—hahaha—but in a good way though, because of your post, because of meeting people by chance. Because of meeting you. So much is random in this world and yet is it? Really lovely.
May 4, 2018 at 7:14 am
Thank you my friend!!!!
May 4, 2018 at 7:19 am
I was thinking of you as I wrote much of this Sarah….you know why.
May 4, 2018 at 7:40 am
Oh Susan—-
May 4, 2018 at 7:20 am
Sorry, realized later this was not written yesterday. I’m still catching up. I still think it’s March.
May 4, 2018 at 7:29 am
xoxoxoxo