RP Tricks of the Trade

Written By: Jeanne and Ingrid - Jan• 26•16

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A wise man once said “write what you know” and knowing is a perpetual education.

I know I’ve learned a lot over the last few years, much of it positive and most of it by trial and error. I’ve assembled an impressive bag of RP tricks that are likely familiar to you all.

Jeanne canoingWhen I was still driving I never turned left onto a two-way street. I ritually put my hand out first when meeting new folk (to spare myself the embarrassment of missing the hand they inevitably offer) and I habitually read restaurant menus online to assure myself a bright and frustration-free experience. I walk into darkened rooms and stand ever-so-coolly still; pretending to survey the scene when in reality I’m waiting impatiently for my eyes to semi-adjust.

Fake it till you make it is my modus operandi; anything to appear “normal”. I could fill a novel with silky pivots and stealth maneuvers but I’d rather write about two essential RP tools; the cane and the flashlight.

Audrey Hepburn made blind sexy in Wait Until Dark but there’s nothing seductive about a spindly white mobility cane. I was cane trained long before necessary and I still don’t walk with one. That iconic badge of the sight impaired has negative connotations for me mired in ego, fear and pride. Granted it’s my own baggage but I don’t want to be pitied, I don’t want to be helped and I don’t want the world to see me as less than I am.

My happy alternative comes from a small Winnipeg-based company called Ambutech https://ambutech.com/shop-online who make a groundbreaking lightweight graphite cane that hits all the right notes. It folds up small into a bag or a purse, its available in an impressive variety of lengths and it sports snappy colors – bright blue, red, green and purple, even yellow and pink if you’re so inclined. I have a 36” black model that serves more as a walking stick but keeps wandering stragglers at bay and doesn’t label me as visually challenged, just someone who needs a little support. This stylish accessory is the ultimate boon.

The flashlight was invented in 1899 but it took me some decades to discover its unlimited benefits. Pocket-sized and relentlessly bright – 250-300 lumens worth – it has enabled me to walk at night with added assurance, locate essential items in my semi-dim closet and navigate unmarked stairs. Pinpointing toilet paper in a dark public bathroom is a game changer. I have flashlights everywhere – my bag, my bedside table, my office and in the kitchen. This simple solution affords significant strides in the way of convenience and confidence. http://www.amazon.com/gp/product/B00D3Y3JEE?psc=1&redirect=true&ref_=oh_aui_detailpage_o00_s00

Let’s pool together our tips and tricks and make everyone’s life a little bit easier! – Jeanne

***

Ingrid blogI’ve been so consumed with saving my eyesight that anything that hints of accommodating my visual impairment has always felt like giving in to the disease. (I second Jeanne’s sentiments regarding the white cane completely.) But this year, as part of my overall GET HEALTHY strategy, I’ve realized that making life easier for myself is actually a way to decrease my stress and improve my overall health.

I’m determined to be healthy so when I saw Jeanne whip out a small flashlight and read through her menu with ease during a recent rendezvous dinner with her and fellow RPer Lesley Etchells (and our amazing spouses), I knew it was something worth trying.

A few days later, Jeanne surprised with a package of three high-powered flashlights that now accompany me wherever I go. And the difference has been life changing. I can now walk down the street in dusk or darkness without feeling the familiar panic wash over me. I can now read a menu in the ridiculously dark restaurants that dot my neighborhood. And I can now find my way to our car in the early morning or night and see the correct door handle—ensuring that I always make it into the front passenger seat.

It’s been so liberating that I’m ready to follow whatever RP tools of the trade tips Jeanne recommends (got to say…I’m intrigued by her colored walking sticks)—especially since she kicks butt more than anyone I know when it comes to living life fully and refusing to let RP get in her way. – Ingrid

 

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12 Comments

  1. Phil says:

    A cane and a torch (flashlight) has been my mantra for the last few years, but after reading the above I have to make a couple of points. Acceptance is a key part of RP, and using the best tools available is certainly not ‘giving in’. Why are you ashamed to use a white cane? A cane is just a tool to make your life easier, do you feel ashamed or like you have given in because you use a washing machine to clean your clothes? The serious issue is your comment about driving, clearly you had no business being on the street and were driving illegally. Most places require a visual field of 120 degrees to hold a licence, yet RP’ers choose to disregard such matters and carry on regardless. The sooner people with RP embrace the use of a WHITE cane and get on with living, the sooner the stigma of using one will be removed.

  2. Sandy Stella says:

    Ingrid you totally inspire me with your articles.Thank you for all these tips. I will share them with my daughter.
    My daughter Tiffany has RP 31yr old.She is so depressed she hardly gets out of bed. I have researched and traveled all around the world searching for Doctors working on a treatment for RP. Nothing I have read or heard from anyone has given me more hope for my daughter than your articles. Everyone has their own way of dealing with RP.Women deal with it different than men. They have different things to consider.
    I read everything you write you have given me hope my daughter can still have a productive and happy life. Your a very strong and courageous woman keep up the good work!

  3. tania says:

    Tip: I drink from a GLASS, despite breaking so many (!). I just like the experience – hate plastic. I used to cry every time my hand accidentally hit the glass because I was reaching for something else and didnt see the glass in my hand’s path. But now, I elevate my glass – I put it on a colorful pedestal on my counter when cooking, or when I am doing work. When eating, I strategically place my glass to my absolute right (against the wall) where my arm/hand wont go reaching for other things.
    So…there’s no need to give up EVERYTHING — enjoy even some ‘dangerous’ things, like glass by making some adjustments. And yeah, I’ll still break some glass, but doesnt everybody?

  4. Jana Cauldwell says:

    Thank you for this post. Once again it highlights that I am not alone in getting into the back seat of a car instead of the front (passenger) seat, knocking glasses over (that makes me so mad when I do that!), stumbling through dark restaurants etc etc etc. And one of my biggest coping mechanisms is being able to laugh at myself and enjoy it when my partner and my daughter tease me so much about it but they mean it with love and with humour. The cane…..I think I would prefer a guide dog though:)

  5. Alysa S. says:

    This was such an interesting insight into your lives and how you guys adapt. I’m glad there are walking sticks out there that make Jeanne feel comfortable, and I’m glad (and impressed) that something like a flashlight, that so many of us might take for granted, truly brightens your lives and changes them in so many ways. I loved this post, especially because I think it’s helpful to both people with RP, and those, like myself, who want to learn more about the condition because of a friend who has it. All the best to both of you.

  6. Nicole says:

    Living with RP is a daily challenge! There are times when people see me out in public and say hello to me. I always put a great big smile on my face and greet them in return, but I’m left wondering who they are. So that’s one of my tricks. Always smile!

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