Posted on

Women On The Move: 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: 

 

26 thoughts on “Women On The Move: Jenelle Landgraf

  1. Reblogged this on doublevisionblog and commented:
    Jenelle was featured on Bold Blind Beauty several weeks ago, and we thought our readers would enjoy reading her post!

  2. It sucks that you felt so wrong in these different ‘worlds’, Jennelle, but I’m happy you’ve finally realised they’re both one and the same! I can’t even imagine how hard it must have been for you.
    Suzy x
    http://www.suzyturner.com

  3. I grew up with RP too, and I tried to fit in the sighted world, even though they repeatedly gave me the message that I wasn’t welcome. Interesting story. I wouldn’t have thought that twins would have such drastically different responses. My ignorance.

  4. What an amazing story! It had never occurred to me before that with genetic conditions, both twins will probably share them. It’s inspiring to read about how they have dealt with it all. 🙂

    1. Hey Bun, yeah same here, it’s something I hadn’t previously considered until I began meeting several sets of twins with genetic eye conditions.

  5. Gorgeous ladies in that picture. You are an inspiration to others who have to overcome struggles not of their own making. Be blessed in your story so that others also can be encouraged. You are amazing.

    1. Hi Oneta, thank you for such a lovely comment. I will pass this on to Jenelle.

  6. Its always fascinating to have such a different take on things. Very honest and very insightful.

    1. Yes, it is Alex. I never tire of reading stories like these and learning of other perspectives. Thank you for coming by. 🙂

  7. In doing peer support I’ve learned that denial is common and isn’t a sin. But, as Jenelle so eloquently explains, there is a place where we blend with the world. It is not easy to find, but it is worth the search.

    1. Hey George how are you? Last time we spoke you weren’t feeling so well, I hope you’re having better days. Thank you for coming here and reading Jenelle’s post. Going through the stages of grief when experiencing a major life event that is beyond our control is almost like a death. Getting to the place of acceptance can be a long road but as you say it’s so worth the search. It’s freeing.

      1. Hi Stephanae. Doing well (almost). We needed to get away and booked a last minute cruise. Didn’t get off the ship. Just chilled and drank Frappuccinos.

      2. Oooo, Nice!!! Chilling and drinking Frappuccinos on a cruise sounds divine.

  8. I found this post very inspiring. We may not all get to a place at the same time…but we often all get there in the end. Very eye opening read as well.

    1. Thank you Deb for your kind words. How are you doing?

  9. What a great post. The interaction of twins going through this together is fascinating.

    1. Thank you Sarah. Jenelle and Joy are the second set of twins who I know personally who are experiencing sight loss. As Jenelle mentioned here their condition is RP. The other set of twins have Usher Syndrome which is a combination of RP and hearing loss.

  10. You’ve brought your Aunt Bebbie to tears Nell. As I have said to Joy, your beautiful twin, I never realized watching you both grow up, that all these issues were part of your life. Sometimes I thought I got it and now as I look back,I didn’t get it at all!

    I believe my dear, that you and Joy are right where you’re supposed to be, right now, at this place in time. I’d acknowledge both of you for your courage to write what you’ve written and to let us all know your story.….I am forever grateful.
    ❤️❤️Aunt Bebbie

    1. Awe, thank you for leaving such a loving comment. Both of your nieces are such wonderful people and I’m so grateful to have met them and blessed that they would share their stories here with my readers. <3

  11. What a great and inspiring post. Acceptance of possibly one of the greatest losses a person can have.
    Thank you for sharing Steph.

    1. Hey Cameron, how are you?
      You’re welcome and thank you for your coming by and leaving your kind comment.

      1. All good here Stephanae 🙂

  12. So interesting to read about the struggle of accepting this…I wouldn’t have thought about that.
    jodie
    http://www.jtouchofstyle.com

    1. Hi Jodie, Thanks for stopping by. I didn’t either until I went through it, and while I knew it wasn’t logical I felt like it was somehow my fault that I couldn’t see and I didn’t want people to know. I’ve heard of other people who have vision impairments who go to great lengths to hide the fact that they can’t see. On one podcast this young man said he would rather people think he was mentally incompetent rather than let them know he couldn’t see.

Comments Are Always Welcome