A Pained Life: What Price Would You Pay for a Cure?

By Carol Levy, PNN Columnist

I recently had my deep brain stimulator removed. The implant made my trigeminal neuralgia pain much worse. As much as I hated the implant for the entire 7 months I had it, I knew I had to give it a try. I was obsessed with finding a cure.

I was looking for something mindless to watch on TV that would help get my mind off the failed implant. I saw a listing for a movie called “PAINLESS.” The name was interesting and so was the plot, about a man unable to feel physical pain:

“Born with a rare condition that leaves him alienated… a man becomes obsessed with finding a cure. A need for normalcy leads him down a dark path, and he must decide if finding a cure is worth paying the price for it.”

For many of us with chronic pain, that is our story too. I was also desperate for a cure.

Because of my very long and involved medical history, my doctor told me I was pretty much out of options. The only choices left were the implant or two risky surgeries.

Now those are the only options left. One surgery is dangerous and with possible complications too great to even consider. The other is essentially a mini-lobotomy that would leave me cognitively impaired.

“You would still have the pain. You just won’t care that you do,” the doctor explained.

Because of my pain, I am about 80% housebound. I have been for decades. The movie character knows this reality of alienation, as I do. Work helps you create a family and network if you don’t have one. No work and staying home most of the time equals alienated and alone.

Like most people, I want to have a “normal” life.  Sometimes the idea of going to the other side, and being “painless” seems like a good thing. And yet, people who can’t feel physical pain have to be even more careful then we do.

We know what triggers our pain and try to avoid those things. Someone who can’t feel any pain has to be on constant lookout that they don’t get injured in any way. They could cut themselves with a knife and not know it. They could get burned touching a hot stove because they can’t feel it.

We are two sides of the same coin. We want to get rid of the pain. The movie character actually longs for the sensation. He even has surgery without anesthesia.

Ultimately, we all have to decide how far will we go in our quest to find a cure. What price are you willing to pay?

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.”