I need to begin this blog post by saying that I am not so sure I should actually publish it, but I probably will; more often than not, I do the things I shouldn’t do…….
I am in a dark place. That phrase always strikes me as so fucking ironic, given the whole blind thing, but it is appropriate on so many levels. So, yes, I am in a dark place; not the place I had imagined myself after completing my orientation and mobility lessons, but that isn’t a surprise. I am an expert at building up the outcome of things and calling it being positive, when really I am just setting myself up to fail.
I imagined that I would emerge from O&M feeling a renewed sense of independence and freedom, but instead I feel like a huge weight has been tied around my neck. I thought I would feel invigorated to go outside and be a part of the world, but I feel more isolated than ever. I know that I am depressed, and that isn’t a new feeling for me, but because I had so vigorously anticipated the opposite, I am pretty far down in the pit.
I have been spending countless hours trying to convince myself that I don’t need Zelda, so I can go back to my life before her; when I went hiking and shopping, and got to put some dedicated effort into pretending that my vision is just fine. But, maybe it is just fine and I can keep getting by like I was before….until something super cataclysmic happens and I am thrust back into reality. Or maybe that is the most stupid plan ever.
The point is, I don’t know. I just don’t fucking know. Is my vision really that bad? Do I need Zelda? Was the visual field correct? I feel so crazy walking down the street with Z, seeing what’s in front of me. Sure, if someone were to suddenly turn a corner or come around the side of me from behind, I wouldn’t have a clue they were there, but how often does that really happen? Do I even know how often that happens? Probably not because I can’t fucking see. But, I can see. I see you walking toward me. I see that you have brown hair and a red shirt. I see you from a block away. But, I don’t see you from even a foot away if you are next to me.
I can’t get out of the mind fuck, and I had to face the fact today that I have been acting like a real asshole by allowing myself to continue to be completely consumed by all the emotions that have come up as a result of bringing Z into my life. I haven’t been that nice to friends and I haven’t been a support to my husband in all the ways I would like to be. I cut myself off from so much that made me feel good, all so I could focus entirely on something that shines a light on everything I feel I am not supposed to be; flawed and broken and fat and lazy and blind. Focusing on all of that made me mean, which is something that is really not ok. Flawed, broken, fat, lazy and blind; well, those things just make me human.
If I sound like a total nutter….well, welcome to my brain.
I know that there are some people who may find the way I express myself to be detrimental, to me and to the blind community, but, come to think of it, they probably aren’t reading my blog. Anyway, I just want to say that I am not a representative of the blind community, nor do I speak for visually impaired people. All of this mass of crazy shit that I write about is just my journey and I have to do it as honestly as I can. My honesty is messy and uncomfortable and I feel so ashamed of it and of myself most of the time, but still I am compelled to write it out and scrape some of the bleakness off my skin.
Stories From the Edge of Blindness 
September 15, 2017 at 9:19 pm
I’m sorry you are going through this, it really sux. But thank you for keeping it real. Swear words and all. What you are going through is a massive mind fuck, well it was for me too. I felt like a faker and a failure for a long time as well. Sometimes i still do. My vision is pretty well shit now, virtually non existent yet my brain, my brain STILL thinks i can see everything and that messes with me from time to time. I don’t want to silver lining it, because this RP vision loss, visibly disabled thing is a roller coaster of ups and downs and maybe I’m on a bit of an up right now but things get better and easier. For me it took a long time, like a really fucking long time – maybe I’m hopeless LOL But if I’m somewhere near normal in the whole journey then it sounds like you are too. I could have written this. Keep the posts coming, I read them all, your words mean a lot to me. Liz .
September 16, 2017 at 6:26 am
Liz, I cannot tell you how much this helps me. I don’t know why, but for some reason this part of my RP story feels harder than everything that came before. I feel so crazy right now with all of it and I know you have been there as well, which makes me feel not so alone. It also makes me feel good when I see your pics and videos of Poppi. I am so thrilled for and encouraged by how well you are doing. Thank you for your kindness and your support of me and of my writing. xo – s
September 16, 2017 at 7:39 am
Please continue writing. Toda I met Mr L Subramani who is a journalist. He is blind and lost his vision due to RP. You may like to read his blogs in WordPress. Regards.
https://grapplingwithrp.wordpress.com/
September 16, 2017 at 12:32 pm
Thank you! I follow him and enjoy his blog very much.
September 16, 2017 at 11:39 am
Don’t you dare feel shame. Sharing your thoughts and feelings is a very courageous thing to do, and there is so much strength in your words. The rabbit hole and I are very good friends, so I understand the darkness you find yourself in. You don’t have to be a representative for anything, or anyone, you are simply required to be you…at all times. If people are uncomfortable with your honesty, then that is on them – it’s not up to you to make them feel comfortable. Your feelings matter and are valid, so you just keep doing exactly what you are doing. I appreciate you so much, and relate to you on so many levels. Go at your pace, and adjust as you need to. This is your journey, your experience, so it is yours to navigate the way that works best for you. You are strong and I know you will keep fighting through the muck. That’s what us people, who feel so deeply, do. You are incredible!
September 16, 2017 at 12:35 pm
You are amazing and so kind and generous and I feel very grateful to be getting to know you. I could tell from your writing that you feel things deeply and you get what it is to go through the world like that. Thank you for your encouragement and support and acceptance and for being totally awesome!!!!!
February 10, 2018 at 5:12 am
You know, by know, how I would have responded has I seen this in real time. I won’t go there for now….oooooh but you are in my radar, woman!!!
February 10, 2018 at 6:48 am
I am so grateful for this. You know, by now, that I have a lot of ups and downs and they can be extreme. Sometimes I am in these dark spaces for a long time, but sometimes I emerge pretty quickly. I am just so grateful that you are in my corner!
February 10, 2018 at 7:13 am
I have seen it, and I am n your corner.
May 20, 2019 at 9:53 pm
“Anyway, I just want to say that I am not a representative of the blind community, nor do I speak for visually impaired people.”
That may be true but you have provided some real insight on what the visually impaired have to go through. At least for me you have. Your narratives on your training with Zelda and how to use her have been a real education.Up until your blog I had no idea that there’s an actual protocol for using a cane.
Then again I’m often slow on the uptake.
May 21, 2019 at 6:48 am
I am so glad, Paul. This is exactly what I want to be able to do. I want to make the experience more tangible for people. I also knew nothing about cane use or mobility training before I started….and I had already been legally blind for years.