My Dad lives across town and when I visit him, usually a couple of times a week, I often take the bus to UCLA and he picks me up by the medical buildings. I was walking to meet him the other day, at the usual pick up place, not really paying attention because I am pretty familiar with the route, and bang; I had a head on collision with a bright blue light pole. The thing is, I had Zelda with me…tucked safely inside my bag.
Zelda is my white cane and we hang out together, a lot. I take her pretty much everywhere I go, but I have to be honest, I haven’t actually been using her. I figured I could just use her when I need her, but this is some pretty skewed logic. The nature of my blindness is that I don’t see what’s around me, so things like poles and curbs and cars, jump out at me from, seemingly, nowhere. With the exception of walking at night and in dark spaces, I can’t really anticipate when I will need Z. I understand that this means I probably need her all of the time, but that means accepting her and the truth of my vision loss. How is it that I can live so deeply inside the reality of my blindness, and yet turn my back on it with such alacrity? Perhaps I am not really living inside the reality of my disease, but more tangled up in the confusion of it; one of the most difficult parts of my blindness is that I can still see.
I know that one day I will come to accept and appreciate Zelda, but it has always been my way to come to things slowly. I am more of a stare at the water for a really long time and contemplate the idea of putting a toe in, rather than a jump in with both feet, kind of person; honestly, I often get up and walk away from the water altogether, taking a road no-one else seems to see. I guess I am trying to walk away from my affliction, but the reality is that now, all roads lead back to RP.
January 14, 2018 at 9:18 am
As you say, the hardest part of your living with RP is that you can see. And you don’t know what you can’t see. Most of the time being careful you can totally bluff it. And so you do!
January 14, 2018 at 9:20 am
And I have you, always watching out for me; literally seeing what I don’t see. I am lucky!
January 14, 2018 at 10:11 am
I’m quite the opposite sometimes, a jump in with both feet kind of person as you call it, which isn’t necessarily a good thing (always). It depends of the context, right? With you it’s perfectly understandable, it has nothing do to with thinking twice but acknowledging and accepting the inevitable and getting used to the new reality. The sooner, the better. Or you want to bump into a few more trees/posts first?
January 14, 2018 at 10:18 am
I know I know…I promise, I am usually pretty smart, but I guess I haven’t gotten bruised up enough. Ha ha.
January 14, 2018 at 10:33 am
I guess not.
January 14, 2018 at 11:48 am
Dude, not a fan of cars and poles surprising you out of nowhere! Umm, like not a fan at all. Man, how can I even begin to understand what you are going through, it’s just not possible, so I can’t tell you what to do, but, I hate the thought of you being in danger because you have left Zelda folded inside your bag. Did that sound like a lecture? Totally not!!! Just don’t want you to get hurt, that’s all. Have I told you lately how fucking brave and awesome I think you are?! You are facing this shitty hand with such grace and courage, and I applaud you for maintaining your perspective through all of it. You are a warrior, girl!
January 15, 2018 at 9:05 am
You are good for my soul and my spirit, Tanya! Honestly, I can probably use a bit of a lecture. I have always had issues with my stubbornness getting me into trouble and I suppose this isn’t any different. You are lovely and caring! Thank you for your support!!!!! xoxo
January 15, 2018 at 7:30 am
More power to you…
January 15, 2018 at 9:10 am
January 15, 2018 at 9:01 am
We are rational creatures but our brains are not. It’s one thing to know your experience of the world and another altogether to actually experience it ya know? I went to school for psychology and the most effective frequency of two forcement is intermittent. So when you can see many things even in the absence of others it’s easy for your brain to think “ahh maybe not this time”. Once again in obsessed with hearing your perspective!!
January 15, 2018 at 9:16 am
Thank you for this Mandi! This totally makes sense and yet I still feel as if it should all be so easy; I should be able to be the blind lady with the cane I imagined myself to be, before I even held Zelda in my hand. But, why would I be? My vision may be changing, but my brain is still the same brain that has always been incredibly skilled at turning the proverbial blind eye (perhaps pun intended – haha). You are lovely and make me think! Thank you!
January 15, 2018 at 9:02 am
That should say reinforcement but oh well loll
January 15, 2018 at 9:16 am
I got it!!!!
January 15, 2018 at 3:52 pm
I always try to put myself in your shoes, whenever I read your updates on what you’re going through. I’m a slow-into-the-water guy myself, I suppose, but I always THINK, in your situation, I’d use my Zelda everywhere.
Of course, I’m a comic geek, so Matt Murdock made white canes cool for me. 😉
But it’s impossible to know what I’d do, right?
I admire your fierce stubbornness. When I was young a buddy of mine had a black light poster on his wall of an eagle flying down to scoop up a mouse and the mouse was ready for death with an uplifted middle finger. The title of the poster was “Defiance.”
I admired that mouse. I admire you. Like the others, I don’t want you banging your head against light poles or being surprised by jumping curbs and cars, because, like them, I care about ya. But, dammit, I also got your back if you want to go un-gently into that dark night.
What’s a few bruises in the name of defiance, anyway? 😏
January 15, 2018 at 6:11 pm
Have I told you that I adore you? I was exactly as you described; even the Matt Murdoch thing. I remember thinking that I was going to be the cool, tattooed, kick ass blind lady with the white cane. And, then I actually had the cane and the water looked cold and the contemplating began in earnest. Thank you for being awesome and having my back; it is highly possible that I will go incredibly un-gently into that dark night. I may also be a bit stuck at level 2 (you realize you have given me an entire new way to look at aging). I am the mouse and I am proud to be the mouse!!!!
January 15, 2018 at 6:34 pm
Damn right you’re that mouse, sister! ❤️
January 18, 2018 at 5:08 pm
“one of the most difficult parts of my blindness is that I can still see.”
Such a great line!
January 19, 2018 at 6:07 am
February 14, 2018 at 10:46 am
Oh you and Zelda…there’s a love-hate relationship story in here. You need to write about yourself from Zelda’s perspective. Here’s a possible title:
“Zelda and Why Susan is a Cane in my Ass”
February 14, 2018 at 11:14 am
I love it!!!!!!! Hysterical!
February 14, 2018 at 11:14 am
Hahaha…so glad. Imagine the stories she could tell.