5 Things the Online Community Taught Us About Blindness
Losing eyesight sucks bigtime! Shame, fear and helplessness threatens our well-being. The word ‘blind’ alone conjures up visions, of living an unfulfilling, lonely life in darkness but those of us experiencing sight loss come to understand this is not entirely true.
While learning to adapt can be challenging we are moving upward, our combined voices are being heard, and we are changing societal presumptions on blindness. The article below celebrates two of those voices. ~Steph
So much has transpired in the last 5 years of blogging together. Our perspectives have shifted dramatically. If you look at one of our very first posts, “To Tell or Not to Tell”, about whether to disclose our vision loss in public, to more recent posts about guide dogs and canes, the shift is obvious. But it didn’t happen overnight. And it didn’t happen without a lot of input and support from friends we met in the online community. Continue Reading…
REQUIEM FOR A RAINBOW
request from the newly blind
Walk with me awhile.
Be at my side, a steadying hand.
A whispered voice should I stray.
Don’t lift my burden, I must learn its weight.
Merely bide with me awhile
‘Til god compensates my sight.
It’s 1983, and two curly-haired 5 year-old girls sit on their dad’s lap, staring into a screen of flashing lights. They hold their heads back as doctors place stinging drops into their matching hazel eyes, and they wonder what all the fuss is about. They hear adults whispering about problems with their eyes, and they become aware that something is wrong with their vision.
It’s been over 30 years since that initial diagnosis of retinitis pigmentosa (RP), a degenerative eye condition that begins with the loss of peripheral vision and night blindness. The journey of vision loss hasn’t been an easy one, and each twin has dealt with it in her own way.
I’m the older sister, by 4 minutes, and this is my story.
For many years, I felt caught between two worlds. Parts of me felt like I belonged in the sighted world, I could see any object or person that I looked directly at with my central vision. But part of me feared that I belonged in the blind world, as I was unable to see objects or people in my periphery or in dim-lighting that other people were able to see just fine. I felt like this was not the life I was supposed to live, like I was meant to be a different person who was not caught between these two worlds. I often envied friends and family with perfect vision, and scorned my twin sister for her inability to see like a normal person.
The more I tried to stay completely grounded in the sighted world, the more displaced I felt. I avoided any association with the blind world, fearing that it would suck me in. I froze as my sister, with her identical faulty eyes, connected with groups like National Federation of the Blind. I hoped that my despondency would keep me from entering this foreign world filled with canes, guide dogs, and braille.
I observed as my sister began untangling the web of shame, and she waited as I continued to mask the shame I felt over my blindness. I watched as my sister began to live an authentic life, and it motivated me to start dealing with the feelings I had kept bottled inside for so many years.
Five years ago, my sister seemed shocked when I asked her to co-author a blog with me about our experiences going blind. Doublevision Blog became a place where we could share our fears, challenges, and triumphs with family, friends, and complete strangers.
After several years of blogging, the two worlds I thought I needed to choose between seemed to converge. I found myself living in one world, and it was not defined as “sighted” or “blind”, The place I live has sighted elements, along with canes and adaptive technology. It is a place where I continue to accept myself and all that I see and do not see. I am exactly who I am supposed to be, living the life I was meant to live.
About the Author: Jenelle Landgraf lives in a picturesque mountain town in the Northwest with her husband and two young children. She spends much of her time outdoors – skiing in the winter, swimming in the summer, and hiking with her family. Her bad habits include designer denim and cheap red wine. She is an active member in her community, serving on the PTO board at her daughter’s school and volunteering weekly at a domestic violence agency. She works for a consulting company as a grant-writer and continues to blog with her twin sister.
You can connect With Jenelle at the following links: