For new readers: When I refer to Zelda, I am not talking about a pet or a child or a childhood toy I just can’t seem to part with; Zelda is my white cane.
It seems I am always waiting; waiting for the next decline in my vision, waiting to hear about that poem I submitted 6 months ago, waiting for the package to be delivered from Amazon, waiting for the scale to give me good news, waiting for the next time I get to eat, waiting for the end of the day and that bottle of wine, waiting for it all to be over. And then, suddenly, something I have been waiting for, arrives.
On Monday of this week, I spent the day seeing doctors and getting tests; nothing serious, just inconvenient, exhausting, and honestly, pretty gross, so I am not going into further detail. That said, I spent a lovely day maneuvering through the seriously fucked up American healthcare system, without Zelda. I have been leaving her at home a lot lately; we are having a heat wave in Hollywood and I have been feeling lazy and not wanting to carry yet another thing when I go out, so Zelda gets left behind. I may have also still been in a tiny little bit of denial, but it really is fucking hot here.
Anyway, I made it through most of my healthcare nightmare day unscathed, until I was being escorted out of the maze of the hospital by a kind, lovely and very fast walking ultra sound tech. I was matching her pace, feeling confident striding down the corridor, and then she said, ” take a right here”, and she turned and I didn’t and the collision ensued. When she said to turn right “here”, I thought she meant a right turn that I saw coming up about 10 feet ahead of us; the right turn she was actually talking about, I didn’t see. I had no idea what was next to me, or how close I had been walking to the wall, or how many adjoining corridors we had passed. When she and I collided, my confidence plummeted to the ground, but I quickly scooped it up, apologized to her and told her I have severely limited vision and I really should have been using my cane. I felt bad about almost knocking the poor woman down, but I didn’t feel embarrassed about admitting that I had a cane and that the collision was my fault because I should have been using it; it was just the truth. If I had taken Z with me, the tech would have walked slower and I wouldn’t have been trying to groove right alone with her, feeling dangerously confident about my non-existent visual capabilities. I took my time for the remainder of my walk through the hospital, and found a comfy chair to settle into while I waited for my husband to pick me up.
Yesterday, I was taking one of my frequent walks to the grocery store, sans Zelda, for the same reasons listed above. As I approached the first street crossing, I thought I heard someone walking near me, but I had no idea how near. I slowed my pace a little, tuning my ears to the sounds of footfalls and rustling clothing, but when I got to the corner and reached for the cross button, I bumped into a woman who must have been just inches away from me. I still get fooled by RP a lot of the time and think people and objects can’t be as close to me as they actually are; my ears are not that well trained, yet.
The woman was super nice and friendly and didn’t seem to think twice about our collision, but it gave me pause. I realized, or perhaps I have known for a while, that my vision has gotten worse. Decline in vision is something that someone with RP is always waiting for, but in my case there has been a lot of uncertainty about whether or not it is actually happening. I am fortunate that my vision loss has had a very slow progression, and there have been so many times when I feel pretty convinced that I am not seeing as well, and it turns out that my vision is stable. This time is different. I feel the world pressing in against me; the shrinking circles of my vision have become more prominent. But, somehow, being in the center of the decline, looking at the world with the heightened sensation of tunnel vision, I don’t feel afraid. I have been waiting for this.
During the rest of my sojourn to the grocery store, I must have had at least 10 near collisions and people coming at me from, seemingly, out of nowhere. I kept thinking over and over again, “I wish I had Zelda with me”. I think I’ll take her out today, no matter how hot it is.
November 25, 2017 at 9:53 am
DAMN IT WHERE ARE THE ROBOT EYES ALREADY!
November 25, 2017 at 4:00 pm
I totally adore you!!!!!!!
November 27, 2017 at 12:03 pm
May I explain and then comment? I have a rare form of Multiple Sclerosis and am a paraplegic. – Over time I’ve gone from shy about my wheelchair to flaunting it. Of course I get stares, but I also make friends. Indeed, take Zelda along and enjoy her company!
November 27, 2017 at 2:00 pm
Thank you!!!!!!
November 28, 2017 at 9:22 am
Susan I wish i could get you to stop thinking of Zelda as an inconvenience and yes it can be inconvenient to have your wand of power in your hand when you already feel overwarm (especially if you use a backpack for your shopping so you can have a free hand) but Zelda will give you fair warning of obstacles and give other people warning that you cannot necessarily see them. Unfortunately she can’t prevent stupidity (Wanda Power certainly hasn’t stopped staff saying over there when I ask where a product is) or rudeness (being walked into by someone too intent on their phone screen) or sheer bloody mindedness of someone seeing you are blind and wanting to blame you for their bad manners because you should have seen them.
Embrace Zelda and the freedom and independence she will give you.
Love and hugs.
November 28, 2017 at 12:56 pm
Thank you Lynne!!!! I am getting there, definitely. You are an inspiration for me!
November 28, 2017 at 1:39 pm
Absolutely!
November 28, 2017 at 2:47 pm
Babes, can I get your email address? I need to send you some information about being featured in Decembers Side bar!
November 28, 2017 at 5:26 pm
Yay! Yes. Thank you! I️ will send you a message on Twitter. You are the best!
December 1, 2017 at 8:59 am
Boy, can I relate. I have retinopathy of prematurity, which is a mostly stable retinal condition, but due to complications, often people do lose their vision. I hated using my white cane until I was fourteen and had no more useable vision. Now I make sure to carry it everywhere. I want to reassure you, acceptinb vision loss gets easier as your vision gets worse. This may be a little ironic, but now that I only have light perception left according to the doctors, I am more appreciative of my vision than I was when I had more. Then after all, I was constantly waiting for it to go.
December 1, 2017 at 9:09 am
This makes total sense to me; I have sometimes thought that being in the” in-between” is so much harder, but I was afraid that sounded selfish. I am grateful for the slow progression of my RP, but the anxiety of waiting can be so debilitating. I am so glad you commented and I am looking forward to reading your blog. Also, completely unrelated to being VI, I love your name; I thought seriously about changing my name to Astrid when I was younger; I have loved the name since I was a child.
December 1, 2017 at 12:48 pm
New to your blog, visiting from #BlogCrush. The thought of losing my vision petrifies me and spurs me on to get my eyes checked as I feel my vision is deteriorating. Not in a losing my sight way, but nevertheless I shouldn’t take my vision for granted. In terms of Zelda’s company, you shouldn’t see her as a burden, but as a wonderful companion. But as with all things, easier said than done! #BlogCrush
December 2, 2017 at 8:23 am
HI Kristy – Thank you for reading. Your comment went into my spam for some reason, but I have retrieved it and wanted to make sure to respond. I visited your site yesterday and I love it!
December 7, 2017 at 12:17 pm
I can only imagine how difficult it must be to slowly be loosing your vision. I love that your stock is called Zelda! I hope your sight stays stable for as long as possible x #blogcrush
December 7, 2017 at 2:01 pm
Thank you!