By Carol Levy, Columnist
I swim at my local YMCA. A new pool just opened and there are no flags or indicators showing when a swimmer is close to the end of the pool.
I can only do a backstroke. Not knowing where the wall is can be dangerous. I had already hit my head once miscalculating where I thought the wall was.
“I wish they had something as a warning that we are close to the wall,” I said to Jennifer, one of the lifeguards.
“Well, don't swim on your back. Then you can see it yourself,” she replied.
“I would love to, but because of my neck situation I can't swim on my stomach,” I explained.
Jennifer responded strangely: “Wah, wah, wah.”
I looked at her in surprise. Usually she is sweet and kind.
“My neck is held together with 12 pins and 2 clamps,” I told her. “I can't swim on my stomach. The posture and head movements for breathing are impossible for me.”
“Wah, wah, wah.”
“Jennifer, my entire neck is held together with metal. That's all that holds it up,” I said, starting to feel angry and frustrated.
“Wah wah wah. Wait! What if you used a snorkel?”
Her suggestion ignored what I had said about why I couldn't swim on my stomach.
There is another reason I can’t use a snorkel: I have a phantom touch-induced discomfort in my face. But that was more then I wanted to explain. And the explanation would require more explanation to explain what I was trying to explain.
On the other hand, my facial paralysis is very visible. The left eyelid is almost always swollen. As soon as someone sees me they know something is wrong.
“I can't keep my head in the water,” I said. “My eye doctor told me I shouldn't even be in the pool.”
Jennifer's response was quick and easy: “Oh I'm sorry. I didn't realize. That definitely would be a bad idea.”
I was flabbergasted. She dismissed my neck issues even after I explained the situation. But I was astounded by how quickly she capitulated when I said my eye is the problem.
Oh, I get it. The eye she can see. It is not something she needs to understand. All that matters is that it is visible and obvious. My neck, on the other hand, is not.
The conversation with Jennifer was the perfect embodiment of the visibility/invisibility issue we all face. At what point do we decide it is not worth the explanation, the struggle to let ourselves and our truth be heard?
Too often I feel like my integrity is being questioned by two people.
The first person is the one who refuses to listen and accept.
The second person is me, because I am too often forced to lie.
I don't want to lie. I don't like to lie. I like to think my word is my bond. But, sometimes it is just easier to break that bond with yourself then struggle to explain and be heard.
Add one more pain to the list.
Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.