When I was first diagnosed with RP and thinking constantly about what it would be like to be blind, I was gripped by the spikes of claustrophobia. I imagined that the world would become tiny, the darkness choking me and snatching my breath; the term tunnel vision, which is used liberally in describing what it is like to have RP, absolutely terrified me. The thought of it was constricting; even writing this, I am holding my breath, as if doing so will stave off the inevitable. The day of my diagnosis was the day I started waiting for the world to close in on me.
I have always been somewhat addicted to darkness, prone to seeking out its path and wrapping myself up in the comfort of its fingers, but in the 15 years since my diagnosis, darkness has taken on new meaning and form; it has left the confines of my mind and heart, and settled into my eyes. I have come to realize that the reality of darkness, in relation to blindness, is the opposite of what I originally feared.
Now, the darkness feels immense. It makes me vulnerable and exposed rather than protecting me, like it did before RP showed up. The darkness swallows the edges of everything and comes into a twisting life of its own. In the dark, I feel as if I am always about to fall and whatever space I am in loses its definition and its structure. It is unsettling.
The most recent experience I had of total darkness, was during my ERG, which you can read about here. During the ERG, the darkness came to life; I could see its tendrils twisting around me, escaping boundaries that only exist in the light. I realized that the darkness is limitless; it has no parameters and nothing about it is predictable. It takes something compact and at once expands and erases it.
Although I am still afraid of what continued vision loss will do to my life and to my relationships, I arrived at a place of acceptance a long time ago. I suppose I have grown to both love and fear the darkness. RP has been a part of my life for a long time; fighting it is futile and although I never welcomed it, blindness is a part of my fabric and I accept its texture.
I want to help expand peoples understanding of what it means to be blind and how a disease like RP works, so I am going to write a series of posts about the mechanics of RP and how it has manifested itself in my particular case. The first in the series, called, “What do you See?“, I posted a few days ago, and I will continue the series next week. I hope that anyone who reads “Stories from the Edge of Blindness” feels free to ask questions; if there is something you are particularly curious about, please let me know and I will write a post about it. Thank you for reading and for being a part of my crazy road to blindness.
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And, if you are in the mood for some pictures of some seriously cute pugs, you can find my babies, Blossom and Jade, on Instagram.
December 16, 2017 at 9:47 am
Susan, I have a question you’ve probably already answered in the past, but I’m still new here. How does the writing work? I know, from reading, that you’re not fully blind (yet?), so is there enough vision still to type and read? Will that … diminish? What then?
I’m very intrigued by your journey, and your strength as you travel along on it. Thank you for sharing your inspiring story!
December 16, 2017 at 11:27 am
First, I love that you are asking questions! Thank you! As far as reading and writing go, I am really fortunate that I still have enough central vision that I can do both. I have to make some adjustments, like enlarging the font and inverting my screens (because of the glare). I have thought a lot about what I will do if or when I lose the ability to see the words on the page or screen and it terrifies me, but there is a lot out there for people who need it; there are screen readers (although I think the voices could use some work) and magnifiers that can change the size, shape and color of the words. As to my remaining vision and what will happen, there is no way to know. The first 7 years after my diagnosis, I lost 50 % of the vision I had at the time of my diagnosis, then the next 6 years, my vision was stable. In the past year and a half, I have lost more vision, but at a very slow rate. It really is different for every person with RP and that is part of what makes it such a mind fuck of a disease. But, in the RP world, I am lucky that my progression has been so slow. I am legally blind, but still have some usable vision, which is actually true for most people you see with mobility devices. Blindness isn’t black and white (hahaha). Ok, so that was a long winded answer, but I hope it clarified some things. I am so glad you asked and please continue to ask questions as they come to you. Thank you for reading and being a part of my journey!
December 16, 2017 at 4:39 pm
Definitely clarified a lot. It must be terrifying for someone who loves to read and write as much as you to think of the prospect of losing that, at least in the way you are used to. I have high hopes that coming breakthroughs in technology will help you, and others who suffer, in new and innovative ways.
Thank you so much for sharing your story, openly… I was afraid I was asking a redundant or overly personal question!
December 17, 2017 at 6:08 am
Thank you Tom!!!!! Your question was thoughtful and great!
December 16, 2017 at 10:21 am
Susan, I have always believed that when we accept the problems that come our way, it becomes easier to find a solution.
December 16, 2017 at 11:12 am
Yes!!! Thank you!
December 17, 2017 at 6:49 am
I am truly in awe of you. RP is not easy and here you are, writing about it, enlightening is and handling it like a boss.. I am glad you have central vision so we can be privy to these blogs. Love and light from India.
December 17, 2017 at 6:50 am
December 17, 2017 at 9:03 am
Thank you so much for your kind and inspiring words and for being a part of my journey. I am very grateful and I am so glad to have found your blog; it is teaching me so much!
December 17, 2017 at 9:04 am
That is such an honor. Thank you so much.
December 23, 2017 at 7:14 am
Your writing blows my mind, Susan. You have such a way with words and they always touch my heart.
December 23, 2017 at 7:39 am
I hope you know how much your support and praise mean to me. I am such an admirer of you and your writing!
December 27, 2017 at 6:33 pm
I do. And I hope you know the same. Truly.
January 2, 2018 at 1:28 pm
I was interested in the same stuff as Tom, so you pretty much answered my question too.
How about some special reading programs?
January 2, 2018 at 3:13 pm
I have my research cut out for me. Ha Ha!
February 12, 2018 at 1:31 pm
I just realized I never asked about this myself. I fell a little ashamed that I have read so much but never even stopped to ask you about reading and writing as RP continues to wear and weigh upon you. I am glad Tom did.
I don’t think I have ever heard a better description for darkness: “It takes something compact and at once expands and erases it.”
Utter brilliance Susan.
February 12, 2018 at 4:25 pm
You are very kind. And no shame, please; You have read my entire blog; you are amazing. I am so happy that you like my writing; it means more than you know!
November 23, 2018 at 10:50 am
I relatebto so much of this, and I have wanted to write so much more than I do, about my blindness, but was afraud of scaring people away from me, because in real life here where I am they zdO run away from me. But being wheelchair bound as well does not help much. I have not been blind for verymlong, and I still get scared, and no one wants to know my feelings about it. Oh well……l
November 25, 2018 at 6:17 am
Oh, Loraine, I am just now reading this and I am so sorry about the late response. This place, this weird virtual place, is exactly where you can write about it and where so many people want to hear your story, care about your feelings. I am so sorry for all of your struggles and I am here for you if ever you need to talk. Sending so much love to you.