bedtime stories

Jenelle and I telling our kids bedtime stories on a recent shared vacation

My twin sister and I have always had a strong connection despite years of people comparing us to those Sweet Valley High books we grew up reading (yes, I’m clearly the nerdy journalist, Elizabeth, and she is the popular cheerleader, Jessica).

People have always asked us whether we have ESP or any shared twin language. While for the most part, the answer is no, I did awake with strong stomach pains in the middle of the night without knowing that she was going into labor 2,000 miles away and sat straight up in bed the moment she had her second child, on the shared birthday of my older child. Beyond that, we have no known twin quirks.

My sister has, however, had a recurring dream about me, about once or twice a year, in which I have regained complete sight and can drive again while her vision remains the same.  You would think that such a dream would leave Jenelle feeling alone or unsettled, but she says that she always wakes up feeling happy, peaceful and comforted.  She has been telling me about this dream for years, and it has actually bothered me slightly because I can’t imagine what this would feel like, as we have always shared our world of vision loss together.

Our denial and acceptance of our lots in life have paralleled in many ways. I can remember going to summer camp as teenagers, and on one of the first nights there, having an activity where we had to run with our cabinmates through an obstacle course in the dark. We typically avoided evening outdoor activities due to the whole night blindness issue, but this was one of those “surprise” activities that was announced excitedly, followed my a herd of screaming teenage girls sprinting out the door with linked arms in a matter of seconds.  We were in different cabins, and mine went first. I, of course, stumbled through the course, trying to hold onto my friends but tripped and stumbled as they tried to drag me along through pits of mud and hula hoop tunnels. I ultimately ended up getting left behind in the mad rush. It was dark and scary and embarrassing.  I had become pretty good at “hiding” my vision loss during the day, but it was impossible to hide it at night, where I felt the instant transformation of low vision to no vision. I remember wishing that I could just have fun, as the activity was intended, instead of feeling terrified and alone.  At 16, I felt a certain shame about being different.

My cabin leader eventually “rescued” me and brought me back to the cabin. Since I was cold and muddy, I took a hot shower and remember thinking that I needed to get all my crying done in the hot steam so that I could be strong enough to be there for my sister, who I knew was probably tripping through the same stupid obstacle course and would be back with her cabin soon. I remember feeling this sudden burst of strength and perspective beyond my years.

A few minutes after getting out of the shower, my cabin leader told me that my sister was really upset and crying in the bathroom and wouldn’t talk to anyone. I remember rushing to get ready because I knew I could comfort her in a way that no one else could. She didn’t really even have to tell me what happened because I knew. I shared with her that the exact same thing had just happened to me, and that I was able to get past it knowing that she would need me to be there for her. I honestly don’t remember the words I said and don’t really think the words mattered. The comfort came through the empathetic presence of another human being who had a shared experience.

We have seen each other go from the extremes of not wanting any of our peers to know about our vision growing up to attempts at alternative cures to acceptance/grief counseling to joking about running into things to sharing our intimate thoughts with the public.

So when I told my sister that I was applying for a guide dog, she was genuienly excited for my next step.

And then she had the dream again, the one where I’m completely sighted and driving. And for the first time she woke up knowing the symbolism behind it. I am getting “eyes” and taking a pretty giant step into the next phase of acceptance. She is going to watch me to see how it goes.

I know there is such a thing as physical healing, and perhaps in the past, I might have wondered if that’s what her dream was predicting. But I also know there is a kind of healing of the human spirit that takes place when we relax into the pieces of ourselves that we have judged and fought with for years.

So I’m entering the obstacle course first again, and hoping that I will again be given strength and perspective to share with my sister when it’s her turn.

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17 thoughts on “Twin Powers, Mud Pits and Guide Dogs

    • Thank you! This is one of those times where little threads from my life that were just kind of hanging there finally found each other and tied together in a way I wouldn’t have predicted. I never would have thought that I would be excited about getting a guide dog….that would have been a dreaded thought only a few years ago!

  1. Another awesome post Joy!! And, I am excited for you and your family to get a guide dog! Very cool!!

    • Thanks Jill! We are very excited, though a little nervous to be honest! I’ve never owned a dog in my life! I know a guide dog is different, but it’s still an animal! I’ve heard from other friends with GDs that the bond is amazing, though!

      • What a lucky guide dog to get you guys as his family!! He or she will work hard…and get to play with the girls in his free time!! Do you get to pick your GD or the breed? …something that doesn’t shed?!?! 🙂

  2. Beautiful Joy. Loved this especially: “there is a kind of healing of the human spirit that takes place when we relax into the pieces of ourselves that we have judged and fought with for years.” Wow… That’s insightful. Adding to my journal now. Thank you. -SH

    • Did I really make your journal? I feel honored! 🙂 That line just kind of flowed out while I was working on this, and it felt really good to write, which is funny because it didn’t feel good at all to live out during all those times of judgment and denial. Yet those exact times of struggle ended up being completely necessary for moving forward.

    • Thanks so much Tammy! You’ve always been so supportive– I’m hoping this next step will be a fun one (and that I’m not getting in over my head with a dog!)

  3. Great writing. This took me back to my camp counselor summer and the gratefulness I feel about having a sister of my own. And, reading SVH books! Not gonna lie, jealous of the special depth of understanding you and your sister have since both of you deal with the VI lot. Sisters rock.

    • Yes, sisters are the best, and there is definitely a certain depth developed when you struggle together, though we rarely notice it at that time. We spent most of our younger years judging each other for our insecurities because we didn’t know how to handle them. I feel extremely fortunate that I have someone in my family who I can relate to (even if it is “Jessica the cheerleader”!– ha, love those books!)

  4. Thank you…I am grateful that my boys are twins and that they are both traveling this road together. “Mom, you know when Jesus healed those blind men in the Bible, the ones who kept talking even when people told them to be quiet?” (I expected the usual, “why did Jesus heal them and not me?” question) “Yes?” “Well, do you think they were brothers? I really think they were brothers, who liked to talk alot, like Mark and me. I am glad I have a brother.”….your wonderful blog served up that little memory to me and I wanted to share it.

    • I LOVE that memory, Tracy! Your boys sound so sweet! I’m glad they have each other too!!
      TThanks for sharing this!

  5. Joy, you are such a gifted writer! This is so well written. And I’m glad to hear you are getting a guide dog!

  6. […] a bit tricky, but my dislike of silent buffets is akin to my distaste for running through muddy obstacle courses in the dark.  Fortunately, Emily is one of my “seamless” friends who is able to assist me via […]

  7. […] Growing up with a disability, children naturally feel different from their peers, which can be lonely and isolating at times.  I remember longing to meet other kids my same age with low vision.  What I would have given to attend a camp geared specifcially for kids with low vision, where I could have competed athletically against kids who also had trouble seeing flying balls, or attended evening campfires with other kids who needed extra help in the dark. […]

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