*A note to new readers: Welcome to Stories from the Edge of Blindness and thank you for reading! I just wanted to let you know that when I refer to Zelda (or Z), I am not talking about a pet or a child, but about my white cane.
Sometimes, I am walking down the street, or more often, to the kitchen, and I have these revelations about my relationship to RP and Zelda and the whole blind thing; I suppose I am thinking about it all the time, but mostly with a great deal of confusion about why I am struggling so much with this particular part of my RP story. However, occasionally, these nuggets of realization will pop into my head and lead me to a little more clarity.
Yesterday, my Dad was driving me to the bus and he asked, basically, how much the cane was influencing my life and what benefit, if any, it provides. All I could tell him was that I was still feeling unsure and having a lot of internal struggle, asking myself the same questions he had asked me. I told him that Zelda definitely helps reduce my anxiety in crowded places, which is true, but I think I probably sounded more like I was trying to convince myself, rather than believing it. I told him that I was glad I have her for situations when I feel anxious or I know my remaining vision will be compromised: for example, if I forget to wear a hat on a day that starts out cloudy and becomes sunny; even with my huge sunglasses, if any sun pops through the gaps at the top or to the sides, I am completely blind and Z would probably come in handy in that circumstance. My Dad said he is also glad that I have her.
I forgot a hat yesterday because Joe and I left early in the morning, before the sun had fully shown its face, and we were rushed to get the dogs to the vet, so when my Dad dropped me off, I thought I may have to use Z to get safely to the actual bus stop. I didn’t end up using her, but I thought about it…….
Anyway, I digress. Back to my oh so profound (probably not) revelation.
I feel that if I choose to avail of the assistance of Zelda then I am choosing to be blind. On a logical level, I know this is ridiculous. RP isn’t my choice, blindness isn’t my choice, and I am already legally blind, but emotionally I have drawn a line that I can’t manage to cross. I am fighting the reality of my disease with iron clad resolve, and I am pretty damn stubborn when it comes to fighting off reality. My petulant self says that I don’t want to be blind and I don’t want this stupid fucking disease, so I will deny it for as long as I possibly can. The problem is, RP has no respect for lines, no matter how solid they appear to be.
RP isn’t the same from day-to-day; it can change in a second due to lighting or the slightest turn of the head. Something can be right in front of me one minute and gone the next; this is why I need Zelda. But, I have had years of practice dealing with the moment to moment changes; I am really good at hiding my blindness, until I’m not and I’m on the ground, bruised and broken and hating myself for having RP.
I imagine everyone must be tired of me and my writing about this struggle with Zelda; I am a bit sick of it myself, but it is a reality of RP that I think is important to write about honestly. I am stuck and afraid and trying to navigate my way through this chapter in the best ways I can. I think these little revelatory nuggets help me face the realities and complexities of my disease and bring me closer to accepting Zelda as a part of my independence rather than a co-conspirator to what keeps me captive.
October 25, 2017 at 1:03 pm
Hi. Firstly hugs.
Was registered partially sighted beginning of March and today the paperwork was done to register me legally blind. It is only 13 months ago (to the day it’s 56 weeks) i was diagnosed with P.I.C (Punctate Inner Choroidopathy). I adore my wand of power that i have had for 16 weeks and a week ago i got a new tip and in that week since getting my ball tip I’m far more confident when walking that i will find hazards. My biggest fear (as cars, buses, lorries are a different texture of blur barely distinguishable and bikes and motor bikes are invisible) is crossing roads so i learn (and if needed walk further to) the safest crossing places.
Try not to think of Zelda as a hurdle as she will truly empower you. Today even though the drops had made even the large vehicles more invisible so they leapt out suddenly like bicycles and motor bikes i felt confident walking to my daughter’s home. It gave me a glimpse of my future as my condition will progress and get worse but you know it made me realise i can learn to cope and that there are many lovely people ready to reach out and help like the car who waited blocking the road so i could safely cross (the driver even called out that i could cross safely.
Without my wand of power I would have to wait for people to come and take me out.
Lynne Nicholson age 56
Not ready to give up my independence.
October 25, 2017 at 1:39 pm
Lynne – Thank you so much for this! It is so wonderful to hear positive stories from people who have come to view and use their canes as tools of independence. I love that you call it your wand of power! You are incredible and I will keep your story and your advice in my heart. Zelda also has a rolling ball tip and it really is incredible how much she helps me see and feel when I use her. Thank you for reaching out to me. Hugs and gratitude. xoxo susan
February 10, 2018 at 11:01 am
Honestly, no. I am not sick of it.The struggle and way you deal with it is why you have a blog. It’s not all unicorns and lollipops, remember?
February 10, 2018 at 2:38 pm
I am lucky if I get a lollipop once a year, but when i do, I enjoy the hell out of it!!!
February 10, 2018 at 2:50 pm
That’s they way to do it!!!