This has been a monumentally good week for me in regard to my vision. Finding out that I will likely maintain enough sight to be able to read and write and see the faces of those I love, has altered my path and left me feeling immense gratitude. I have allowed myself to feel genuinely happy about this, which isn’t something I always do. However, I am also left reflecting on how RP has and will always impact my life.
I have spent so many years on the edge of blindness, agonizing about living in this confusing place between being sighted and being blind. I have held my breath in anticipation of being pulled from the precipice by inevitable darkness. I have been on a wire, balancing precariously, waiting. Now, knowing that I may never go completely blind, I am elated, but still on the wire, still faced with the confusions that come with being partially sighted. I had resigned myself to the future I thought RP had in store for me, but now I have to figure out how to settle onto this weird middle ground, how to resign myself to the fact that I may always reside on the edge of blindness.
I am, of course, grateful for the vision I maintain, but living in what I have called the “purgatory of sight”, comes with its own set of challenges. I am not a religious person by any means, but from what I have read, purgatory seems like a pretty fucked up place to be. It is neither here nor there. It is nowhere and nothing. It is a place of invisibility, which does not hold the cool factor of a cloak of invisibility, because you can’t take it off when you feel like being part of the clear and whole picture. There is a picture and I can see it, but it will never be clear and it will never be whole. I feel stuck, trapped, truncated. But, this isn’t new. This has been my reality for years. What’s different is that I have been given a choice I didn’t know I had a week ago. I can choose to focus on the good fortune of the sight I still have and may have for the rest of my life.
The landscape in front of me has at once changed and stayed the same. I still have RP. I am still blind and the reality of my brand of blindness is incredibly confusing. I am still on the edge, but perhaps it is where I have always been, long before RP came into my life. It is a crazy view from where I stand, but it is the view that gives me the words that I write and see on the page. I can see the words on the page. I will be able to see the words on the page tomorrow and maybe for the rest of my life. I don’t take this lightly. I am so incredibly lucky.
January 21, 2018 at 7:49 am
You are trully a blessing! Thanks so much for allowing us to be included in this journey with you. As I read the words here on this page, I could feel the happiness with you. All I can do is imagine what it has been like for you, but when I see your pictures & you are smiling it gives me hope to endure whatever. You are a real trooper!
January 21, 2018 at 8:40 am
Thank you Flo! I am so grateful for your kindness and inspiration. I am also glad you commented because I have been wanting to tell you that I am having trouble commenting on your posts. I am a bit tech challenged. Is there a trick to it? Also, how are the bifocals going? Or are you doing trifocals?
January 21, 2018 at 10:34 am
You are so welcome! Ok, once you are on my blog site, you can click on the title of the post you are wanting to comment on & scroll to the bottom to leave a reply. I think this will be easier for you because the other way is after you like a post,& comment on this post will pop up to the right ,but it’s small. If that is not sufficent, have you tried through Reader. Please let me know if this will help you. Thanks for bringing this to my immediate attention. It took me a full three weeks to really adjust to my trifocals. Some days I still have to figure out how to adjust.
January 21, 2018 at 3:39 pm
This is super helpful Flo. Thank you!
January 21, 2018 at 4:17 pm
Anytime Love!
January 21, 2018 at 8:14 am
Only an exceptional human being can look at this level of adversity and extract the beauty from within it. The darkness caused by your vision loss has also brought extraordinary light to your life, and I adore the absolute hell out of you for being able to recognize and acknowledge that. Not so sure I would handle it with the grace that you do. You are an inspiration, Susan, and you should be so very proud of yourself.
January 21, 2018 at 8:47 am
Tanya, you are so incredibly kind and generous. I don’t really understand why you see in me what you do, but I am so grateful to have your light in my life. If I live with even a fraction of the kindness and bravery that you do, then I am doing something right. Perhaps part of this living thing is to learn how to struggle beautifully, because no matter who we are, the struggles will come. You are a gift, my friend!
January 22, 2018 at 6:36 am
As I was reading along it occurred to me that most of what I see, on a daily basis, ain’t worth seeing, anyway… Maybe this is a gift! 😊
All kidding aside, though, I’m still just elated about your good news this week. Your journey (and courage) definitely makes you a hero in my eyes! 💪
January 22, 2018 at 7:59 am
I am with you Sir! I often take my glasses off when I am out in a restaurant and I have to say it can be much more peaceful when I can’t see any of the chaos. Thank you, as ever, for your lovely words, your care and support. You are awesome!!
January 22, 2018 at 11:51 pm
I think of you often, I fear sight loss. I would be walking around terrified if I had to deal with what you do! Yet, you tell us the stories and handle each and every situation with calm determination. You are amazing.~Kim
January 23, 2018 at 9:02 am
Oh Kim, Thank you so much! I feel the same about you. You totally get all of the challenges that come with having an invisible disability and you do life with so much grace and light! You are awesome! Susan
January 23, 2018 at 10:58 am
So nice of you Susan!
January 23, 2018 at 11:44 am
I really admire your strength and positivity in your journey. I could only imagine how tough that is… I’m wishing you all the best! Love and hugs 💖🌈🌻
January 23, 2018 at 12:35 pm
Thank you so much!!!
January 30, 2018 at 6:15 am
I am glad for you. Regards
January 30, 2018 at 8:14 am
Thank you Lakshmi! I am very lucky and grateful!