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WOTM 29 Featuring Jenelle Landgraf

Freedom in Acceptance

Jenelle & JoyIt’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: 

 

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Guest Post: What it’s Like Being an Identical Twin: The Good, the Bad and the RP

Originally published on July 12, 2015 by Jenelle and Joy of DoubleVisionPhoto of Jenelle & Joy next to each other wearing hot pink Tees and turquoise statement necklaces.

Growing up, we were the best of friends.

Joy: Except for that time, in utero, when she sat on my head for nine months, and then made me wait four laborious minutes while she made her grand entrance into the world.

Jenelle: Or that time when we were 18 months old and she sunk her teeth into my arm after I stole her stuffed bunny.

Joy: Or that time when we were eight, and she poured a glass of milk over my head at the dinner table.

Jenelle: Or that time when we were nine, and she signed my dad’s Father’s Day card, “Love, Joy. p.s. not stinky Jenelle.”

Joy: Or all those times as teenagers when she chased me around the house trying to whip me with a wet bath towel, while I ran away, chanting “Violent lady! Violent lady!”

Yes, we played and fought hard like most siblings do growing up. We had a pretty typical suburban middle-class childhood. And we experienced the things that most identical twins describe. We learned to smile and answer politely when asked for the umpteenth time, “Wait, which one are you?” We delighted our classmates in 2nd grade when we switched classes for the last day of school. And we tricked boyfriends over the phone with our matching voices during high school.

Living 2,000 miles apart for the past 16 years, opportunities for trickery have lessened, though we have had fun watching our kids’ reactions to their “other mom.” Joy’s older daughter exclaimed, “Two mommies!” upon seeing Jenelle as a toddler, and most recently, we tried fooling Jenelle’s 2-year-old son, who is in the separation-anxiety stage, into giving his mommy a break. Though we occasionally succeeded, he seemed mostly creeped out, to the point of slapping Joy in the face!

In a quick, unofficial survey of “twin opinions” online, the general consensus among doubles seems to be that twins love having a built-in best friend as well as tricking people, and they hate being referred to as “the twins” and being constantly compared to each other. We can certainly relate to these sentiments.

Apart from being twins, we were just ordinary kids. Yet having a stunt double was not the only thing that set us apart from other kids. It was the elephant in the room that we tripped over on a daily basis, and yet we rarely talked about it. Our struggle with vision loss is amongst our earliest memories, right along with Sesame Street and learning to ride a bike.

Some might think that sharing this type of loss would have made us closer as a result, or perhaps made it easier. After all, most people with rare degenerative eye conditions don’t have the privilege of growing up with someone in their exact same shoes, or shades, not to mention someone with shared DNA.
But we didn’t quite see it this way.

All we could see was this other person, who looked just like us, doing the same seemingly dumb things we were trying to pretend we didn’t do:

Jenelle: like getting hit in the face with flying balls.

Joy: or pucks.

Jenelle: or not using her eyes.

Joy: or getting stuck in obstacle courses.

Now, at 37 years old, there are still mannerisms about each other that cause us to cringe:  Why is she scrunching up her nose like that when she talks? Is that what I sound like when I tell a joke? I hope I don’t sound like such a know-it-all when I talk. But our vision loss is a characteristic that we share and are learning to accept and embrace about each other and ourselves. Sharing our stories in this blog over the past 4 years has helped us in our process.

“Alone we can do so little; together we can do so much.” – Helen Keller