Jan 14, 2020

The Way I See It: Blindsided

The Way I See It is a ten-part blog series about living with vision loss, written by FBC community member Marlene Cust. Marlene lives in Victoria, BC, and has retinitis pigmentosa. To celebrate The Year of Vision, we will be running Marlene’s series in our eNews.

My faith in a benevolent god was shattered when I was nine years old. I had learned about God: a magical, Santa Claus-like entity living up in the sky, who would do nice things for you if you asked him politely and truly believed he would do it. So I decided to make my own request.

I had started wearing glasses at age six and, although they helped me see the chalkboard in school, they made me feel ugly and uncomfortable much of the time. Also, my father was blind and I didn’t want to end up like him.

One evening before going to bed, I knelt and prayed fervently that God would give me the perfect vision I so desired. I was strong in my belief that he could and would answer my prayers. I closed my eyes, climbed into bed, and pulled the covers over my head. My expectation kept me awake for a long time. I lay there, resisting the temptation to peek because I knew I had to prove that my faith was strong. Finally I fell asleep. I woke up early the next morning, eager to check out my new improved vision. To my dismay, I found that my vision remained unchanged.

What I later came to understand was that blindness was part of our family legacy. My paternal grandmother carried a mutant X-related gene for an eye condition called retinitis pigmentosa, more commonly referred to as RP. This condition, caused by a deteriorating retina, results in decreasing peripheral vision, increasing tunnelled vision, and, eventually, blindness. My grandmother passed this gene on to her children. Several of her sons, including my father, developed RP, and several of her daughters became carriers and/or inherited the condition as well.

My father, in turn, passed his RP gene on to his daughters, but not to his sons. One of my sisters and I developed RP and my other sisters, although free of blindness themselves, became carriers who could pass the RP gene on to the next generation of sons and daughters. So, as I grew up, low vision and blindness were pretty commonplace, and even normal, in my immediate and extended family.

My own vision loss has been slow but relentless, demanding ongoing changes and adaptations to my lifestyle. I am now legally blind with macular degeneration as well as RP. I no longer beg an unheeding god to restore my eyesight. Over the years I have learned to rely more on my other senses, assistive devices and technologies, and the support of others. I have developed a positive attitude and strengthened my own inner vision which directs, sustains, and comforts me.

Marlene Cust