Feb 12, 2021

My White Cane (PART 1): FeatuRing FBC’s Shari Shaw

This White Cane Week we’re sharing an inspirational written piece from Fighting Blindness Canada’s very own Health Information Officer, Shari Shaw. Shari lives with retinitis pigmentosa (RP), an inherited retinal disease that damages light-sensitive cells in the retina leading to gradual vision loss.

Shari’s White Cane Story

This is so weird. I feel so weird. Suddenly, I have gone from experiencing my vision loss quietly, alone, to this.

I bought my first white cane. I was going to buy it before we went into quarantine, but it fell down the priority list until now. So here we are. Here I am. I have so many emotions I am practically vibrating.

I have retinitis pigmentosa, also known as RP. I was diagnosed at 10 years old. Back then, people diagnosed with RP were basically told to go home and wait to go blind. So, I have been waiting, and ever so slowly the darkness has creeped in. Until now, I have lived this fate on my own and with my immediate family.

Sure, I tell people all the time I have limited vision. But most people, minus a few close friends, do not really understand. It isn’t their fault. I have full central vision that helps me do day-to-day things, so I guess I usually appear “normal.” The truth is, I am just so used to trying not to think about it that I compensate for my lost vision by looking around a lot more or not engaging in activities where I may come across as ‘clumsy.’

Sometimes, I may come off as rude or standoffish because I am quietly dealing with the huge, unbearable pain of my destiny. This is why I got the white cane. I no longer want to suffer silently; apologizing for not seeing someone or something, cursing myself quietly when I stub my toe or bang my head.

To me, this cane represents freedom. Freedom from suffering my pain alone.

I think this will shock my other friends and family. My disease has been progressing so slowly that I feel they may not be ready to hear “I am visually impaired.”

It is not okay; I am not okay. But I am better now.

Shari Shaw
FBC Manager, Health Information

Access Shari’s My White Cane Story Part 2.

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