Toward the end of last year, I started writing a bit more about the ways in which RP affects my physical life and tried to answer some questions. One question that I haven’t answered, posed by two of my fellow bloggers and friends, Mandi and Tom, is about how my other senses are affected as my sense of sight is swallowed up by RP.
There are differing opinions about this. Some people say that the idea of your other senses getting stronger is a myth, others think it is pure fantasy – who doesn’t want to be DareDevil after all? I think it is an inevitability, but also something that can be cultivated over time.
I didn’t realize the extent to which I had expanded the use of my other senses until I was learning how to use Zelda (my white cane). A lot of it happens without having to think about it. Our brains help our bodies compensate for the things that are lost to darkness. I haven’t found a way to adequately describe what my personal vision loss looks like – it is difficult – but it is as if it happens silently and secretly. The progression of RP is, in my case, a slow process, and because I lived for years with it before my diagnosis, having no idea that I had the disease, I thought what I was seeing was normal. In basic terms, you don’t know what you aren’t seeing because you can’t see it. However,my brain must have been throwing signals at my other senses and pushed them into overdrive. I was using sound and touch and even smell to help paint clearer pictures of my surroundings, and I didn’t even know it.
I think it is instinctive for most sighted people, and partially sighted people like me, to turn to their sight first in order to gauge the parameters of the physical world. This is one of the things that makes it so confusing, and potentially dangerous, to be partially sighted. Because I still have some usable vision, I automatically go to my eyes to get the picture, but after Zelda came into my life, I started realizing how quickly my ears started working to fill in the gaps. Most often, the only way I know someone is near me or next to me is by hearing their voices, footsteps, breath, clothes rustling. I hear cars in my blind spots that I never actually see. I know when dogs are approaching because of the sound their tags make against the metal bits on leashes. I use my ears to keep me alerted to possible threats on the street and to give me an idea of what the activity of the city around me must look like.
When I started working with Zelda, I learned that I could cultivate the use of my hearing to further help me. I learned that it isn’t enough to just let my hearing do its own thing, but that I need to pay attention to the sounds, be vigilant in my listening. Be patient.
The most significant day in my mobility training, in regard to using my other senses, was the day I was blindfolded and walked around my neighborhood. You can read about it in further detail in my post “Blindfolded”, but that was the day I learned to let go of my eyes. Without my vision to turn to, the sounds of the city came flooding in all around me. With my ears, I identified certain intersections, I heard the hum of specific makes of cars and people coming from a block away. I heard the buzz of electrical wires mingling with the traffic, and birds communicating as if they were circling my shoulders. I wish that I could say that I had suddenly developed bionic hearing, but what happened is that I was forced to pay attention to the sounds some people are able to disregard because they can rely on their eyes.
As all things, the cultivation of using sounds to help me navigate the world is a process. Some days I walk down the street with Zelda, eyes closed, and allow my other senses to kick into full gear. Most days, I still fall into the habit of turning to my eyes for answers, but I am now more aware of the sounds that lay beside and beyond my limited field of vision. I listen like I have never listened before.
I know there must be things that I miss, questions that I don’t answer or that crop up from certain posts. I love the questions, so please don’t hesitate to ask.
*Note: The title of this blog is actually taken (in all but one word) from a book by one of my favorite authors, Amy Tan, called “The Hundred Secret Senses”. There is no correlation between this post and the book, beyond the title, but I wanted to give credit where credit is due, and turn you onto Amy Tan, if you aren’t already familiar with her.
February 21, 2018 at 11:34 am
Thank you for sharing what you are going through… Hugs 🙂 ❤
February 21, 2018 at 11:35 am
Thank you Walt!
February 21, 2018 at 11:36 am
You’re very welcome 🙂
February 21, 2018 at 11:55 am
Thank you for sharing this part…you know you better get to writing about her….I am serious. The Adventures of Susan and Zelda.
What has she learned about Susan I wonder.
February 21, 2018 at 11:56 am
I am plotting the story in my head……!
February 21, 2018 at 11:57 am
Oh wonderful. 👏👏👏👏👏👏👏👏
February 21, 2018 at 11:59 am
Hey dear, thanks for sharing.
I do have a couple questions (which, I’m sure, doesn’t surprise you). I was wondering what city you live in since you obviously go out on your own. Not many cities are sight-impaired friendly.
I guess the one where you abide is walkable and pedestrian friendly. BTW, are you able to run errands on your own and which ones?
February 21, 2018 at 12:07 pm
Yay!!! I love the questions, Bojana. I actually live in one of the least sight impaired friendly cities in the U.S., Los Angeles. But, thankfully my neighborhood has everything a person needs within walking distance. I can pretty much run any errand that doesn’t require carrying super heavy or bulky items. It does make me incredibly exhausted being out, simply because of having to be so constantly vigilant, and the fact that over use of my eyes can be painful. I really am lucky to have as much sight as I still have, but it comes with complications. I am also not always as vigilant as I should be and have gotten hurt while I am out doing errands; which is of course totally my fault.
February 21, 2018 at 12:25 pm
So you have to learn to be a visionary. Or at least take Zelda with you ALWAYS.
February 21, 2018 at 2:13 pm
❤️❤️ hugs and hope
February 21, 2018 at 8:01 pm
Thank you so much for sharing this miss Susan!! Hope you have been doing well this month..
February 22, 2018 at 5:58 am
Thank you so much!!!!
February 21, 2018 at 10:15 pm
Very thoughtful. Thanks for this glimpse into your journey.
February 22, 2018 at 5:57 am
Thank you Bruce!
February 22, 2018 at 6:49 am
You are so fucking amazing, Susan. Your ability to process all of this adversity and darkness and extract something positive from it is remarkable. I do worry about you out there wandering around, but thankfully you and Zelda are working on your relationship and well, you are a warrior, so I know that you will be ok. Thanks for sharing this journey, it has taught me the true definition of courage.
February 22, 2018 at 8:29 am
Oh Tanya, I so needed this today! I was feeling so blah, so weighted, when I wrote this yesterday. I probably should’t post the things I write while in that space, but oh well. I do have those moments within my blindness that are kind of magical and even empowering. I adore you to the moon and back!!!!!
February 22, 2018 at 4:34 pm
Aww, glad that my comment helped you on a day you really needed it. Never question whether or not you should post something – it doesn’t always need to be shiny, only real. And this post was just like they always are, and that is why we all draw so much inspiration from you.
February 22, 2018 at 8:07 am
Thank you so much for sharing. You have many superpowers but writing is your ultimate superpower. I can’t get enough!!
February 22, 2018 at 8:23 am
Thank you Lovely Mandi!!!! I was feeling a bit drab yesterday when writing this post, but you have lifted my spirits. I am super excited about the new directions you are exploring with your own blog and writing. You know I am a huge fan.
February 22, 2018 at 9:37 am
I am your biggest fan ❤❤
February 22, 2018 at 11:23 am
This answered so many questions! I often assumed that alternate senses don’t actually get more acute (although I wouldn’t have any way of knowing either way 🤣), but that we just become more aware of their existence, and what they perceive, by default. I think we probably all rely upon what we see most of the time! Extremely well framed, my sister. Just awesome.
As always, I read everyone’s comments before I responded (good job, all!), and noticed that you said (twice) that you weren’t in your best place when writing this. Well, I’m glad you persevered! It’s perfect, absolutely. One of the biggest takeaways I got from Stephen King’s On Writing was that we have to write whether we feel like it or not, if we want to be a writer. Or was that Pressfield who said that? 🤔 Regardless, it’s true, and it’s also true that we don’t know when our best stuff is gonna come out, so we must … just … write!
I’ll close by saying how happy I am for Zelda; she must feel incredibly safe to be walking the streets with such an able protector such as you. 😎
February 22, 2018 at 3:59 pm
I think we would all love to believe that the other senses get magically enhanced, but although there is no magic, there is some pretty cool change.. Thank you, as ever, for you support and your amazing comments!!
It took me until about a year ago to start living what Stephen King has known for ages. Often, when I write out the blah moments, I get motivated.
I will pass your message along to Zelda; I think she doubts me sometimes….no idea why. hahahaha!
February 25, 2018 at 3:13 am
Other than you saying you were feeling blah, your writing gave no indication of it. Thank you for sharing this. It’s times like these (trying to figure out if my other senses are stronger) that I really wished I had paid more attention in school, especially science. I feel as if I have “bionic hearing” almost to the point of complete sensory overload though and have not figured out how to use this to help with my lack of feeling when I touch things. I do know that I rely heavily on my eyes for my balance, so much so that I can’t stand up with my eyes closed. Reading that you walk around blind folded, made the hair on my arm stand up, I can not even imagine. Hoping for the best, but planning for the worst. You are truly an inspiration my dear
February 25, 2018 at 6:25 am
You are an inspiration to me Grace!!! I find it incredible how we find ways to adapt as our diseases progress, how much we are capable of. You have had to learn to rely on your eyes even more than most, as your sense of touch changes, where as I am learning to rely on my hearing and sense of touch as my sight fades. Unfortunately, I think my strongest sense is my sense of smell, which can be extremely unpleasant….hahaha.
February 25, 2018 at 6:30 am
Mine too!.. I have a boston bulldog that has gas so bad she can clear a room (we have even vacated the car on more than one occasion)
February 25, 2018 at 6:32 am
Hahaha – we have pugs who have the same issue.
February 26, 2018 at 4:04 am
Thank you Susan for sharing.