A Pained Life: The Hand of a Stranger

By Carol Levy, Columnist

I went to the Women’s March on Philadelphia Saturday. I am very politically minded.  I love doing these things. And each and every time, I have the same problem

I forget about the pain. I forget about the specifics, logistics and potential for pain.

I have trigeminal neuralgia, which causes severe pain on the left side of my face. It can be set off just by touch. I am also legally blind on that side.

It puts me in a precarious position. It is essential that I not let anyone get close enough to accidentally brush against my face. For me, the innocuous sign of an outstretched hand or arm is dangerous. And since I can't see on that side, I have no idea how close someone might be to touching and triggering the pain.

I did not expect the size of the crowd, which was estimated at 50,000 people. Small rallies are bad enough, but this one was so enormous that as soon as I left the train station and went towards the designated rally area, I was engulfed in a sea of people.

And I was petrified. Thousands of people were bearing in on me.

I tried to make my way through the mass of people. Everyone was very nice. “Excuse me. Excuse me,” I said.  Some moved, but some could not with the press of so many bodies.

image courtesy of philadelphia mayor's office

image courtesy of philadelphia mayor's office

One woman smiled as I explained to her I was trying to reach the borders of the rally, so I would not be in the midst of so many people. For this kind of event it was an odd thing to say. She looked at me quizzically. I figured I had better explain.

I have learned to be hesitant about explaining my condition. My family has been nasty about the pain. Strangers, even friends and acquaintances, can and have been unpleasant about it. As way too many of us know firsthand.

This was a “'talk with the stranger in the next seat” moment. I would never see her again, so there was no risk in explaining and no worry if she didn't understand or could not care less. Plus, my need outweighed my concerns about how she might react.

Her reaction was unexpected. She put her arm around me and held out her hand. Taking mine in hers, she led us through a bastion of folks. When we got to an area less crowded, she let go and I continued on.

What a wonderful experience and for so many reasons, not the least of which was I said what I needed and I was heard.

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.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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.