There is a movement of positivity sweeping the disability community, and I love it. I think it’s empowering and life changing for those of us who have found ourselves stuck in cycles of denial, loneliness and even despair. I love how people within communities like The Mighty can write about negative experiences and find the positive lessons within them. I am constantly learning something new and feeling encouraged.
But there are moments when I feel the gravity of my disability’s effects, and am flooded with disappointment. Like three months ago on Disneyland’s “Soaring Over the World” ride, in which I saw very little of the world over which we were soaring.
Having grown up legally blind, I am accustomed to not seeing the things other people see. I am used to smiling politely as people “ooh” and “ah” over stars in the sky, an adorable puppy wearing a sweater, the winning touchdown in a football game, etc. These missed sightings usually result in very little disappointment, but there are occasions when I feel side-swiped by disappointment, like at Disney.
We had waited in line for over two hours to experience the legendary “Soaring,” and I was excited to see what all the hype was about. I strapped my seatbelt on and squeezed my 6-year-old daughter’s hand with shared anticipation. But as the ride began, my excitement dwindled. There were no voice descriptions, and everything was extremely visual. Plus my husband, usually my extra set of eyes, was two seats away. My neighbor leaned over occasionally, saying “African jungles!” or “Paris!” and tried to briefly describe them, but she was also trying to take in and enjoy the ride. And I realized with surprised sadness that I didn’t even want it described. I just wanted to see it.
The multisensory experience did include scents from each place, realistic breezes and sound effects, but the 3D effect that made everyone feel like they were actually flying was lost to me. The spread out images and colors that zipped toward my fellow riders like magic appeared to me as pixelated puzzle pieces that didn’t seem to form any recognizable picture. Something about the lighting and speed with which the images came made it impossible for me to see anything at all.
My two daughters, husband and neighbor exited the ride in awe, saying it was incredible. I experienced portions of it, and still felt it was a neat experience, but nothing close to what everyone else raved about.
I was in the “happiest place on earth” and felt completely sad. But my sadness was followed by something worse: guilt.
Because I am a writer who loves to share insights about what living with vision loss has taught me, I felt guilty for feeling such sadness. I felt guilty for feeling something other than brave and grateful and positive. This feeling of disappointment in myself and my emotions seemed to increase my negative feelings exponentially. My sadness and guilt quickly turned into shame because of one searing thought: “There must be something wrong with me if I can’t look on the bright side all the time.”
I held that feeling in after Disney, not knowing what to do with it, and it squelched my desire to blog or write anything for The Mighty over the past couple months because I felt like a hypocrite. But then I came across a book that talked a lot about the benefits of negative emotion. Harvard psychologist Susan David talks about how our culture overvalues positivity in her book, “Emotional Agility,” stating “Research shows that attempting to minimize or ignore thoughts and emotions only serves to amplify them.”
In a recent podcast interview, Susan explains “Emotions have evolved to help us in the world, and with these emotions — even negative emotions — come gifts.” She goes on to explain that spending lots of energy trying to be positive can take away our ability to be authentic in our difficulty. “Sometimes when we’re spending so much time and energy trying to be positive, it takes away from having the real conversations we need to have with our family and friends.”
So when I felt that same feeling of disappointment resurface on a recent whale watching tour, I was a bit more prepared. As the vessel rocked, and the other passengers skittered to one side of the boat to view a family of dolphins, I again felt an isolating disappointment over not seeing the sea life others raved about.
Fortunately my friend Mandy, who is also a trained therapist and extremely intuitive, was on the tour with us and sensed my disappointment. “How much of that were you able to see?” she asked as the boat pulled back into the dock.
“A shadow and change in the water here and there, but not much,” I admitted.
“Thank you for going,” she said simply, and her underlying intention was felt. She recognized that I came along to be with her and my family, to accompany them on an activity I wasn’t able to fully experience. She didn’t speak any further or try to add anything trite, such as “well, at least it’s sunny out!” or “at least you can hear the waves!” There was no trying to “make me feel better.” I sensed permission from her to feel whatever I needed to feel. And no judgment.
And so I let myself feel. I felt sad and disappointed. But I didn’t feel guilt over it, or shame.
I want to encourage my Mighty friends to sit with negative emotion from time to time without trying to stuff it or change it. Some things in life are disappointing, and so it’s OK — refreshingly so — when someone in my community says, “this is hard.” It leaves room for me to connect and say “For me, too.”
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