By Carol Levy, PNN Columnist

I have become housebound 90% of the time. I don't want to go out if the pain has already started. And if it hasn't, I don’t want to go out and risk setting it off.

I have looked for groups to join, online and preferably in “real life.” Each one I find invariably involves an activity that triggers my trigeminal neuralgia and causes eye pain.

I love to read, but a book club requires reading a chosen book within a specific period. Then at the meetings, looking through it as certain passages, paragraphs and pages are referenced.

I thought of trying to find a hiking or walking group. I need exercise and I enjoy walking. But if it is breezy or, even worse, windy or very sunny, those are triggers for the face and eye pain.

I adore cooking. But cooking groups require cooking together and reading recipes, which requires a lot of eye movement and usage, which are my personal recipe for causing severe pain.

Before Covid I found a local choral group. I wanted to be a singer when I was young and moved to New York in my early 20's in search of a career as a singer. But six months after I got to NYC, the pain started and brought a halt to all my hopes and dreams of a singing career.  

The choral group offered a chance to sing and, more importantly, to be with others who love to sing. But it is a horror in terms of having to use my eyes to read the music and to follow the choral director's hand movements as she directs the timing.

The other night we had a concert. We only go to nursing homes, so the audience is happy to see us and accepts that we are kind of raggedy. I was excited that I would be performing with the group, but I was also very afraid. I would have to use my eyes continuously and the lighting may be too bright (another source of severe pain for me).

Like many of us, I don't like taking opioids. I have found through the years that none work for me, so my doctors and I agreed on codeine. I take it because it makes me feel as though I am doing something about the pain, something that gives me a false sense of control over it, a small amount of succor. But it’s no help for the pain.

So what do I do? Do I tell the director I can't do the concert? That would be very unfair to her and the other members (there are only 11 of us). Or do I try to smile, sing and not grimace through the ever-increasing pain?

Most people's lives are based on decisions. Do I take the car or the bus? Do I have the steak or the vegetable plate? Do I buy the house or rent an apartment? Do I tell the boss I quit? Many of the decisions we have to make are often life-changing or life-altering.

Outside of decisions regarding medical treatments that have potential risks, our choices are rarely life-altering. And yet, they can be just as devastating. Do I go and make the pain worse? Or do I stay home and regret not going? Is it easier to hide from life or easier to face the pain?

That is a conundrum that has no easy answer.

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.