I often think about how lucky I am, in the scheme of things, to have trigeminal neuralgia (TN).
I know some folks reading that may be doing so with jaws fallen open, and exclamations of, “Are you kidding me! How can you even think to that say that?”
Let me explain.
My trigeminal neuralgia is the result of a neurovascular birth defect. There are many, many fine tiny extra blood vessels throughout the left side of my brain. They are the cause of my TN.
Dr. Schatz, the neuro-ophthalmologist who finalized my diagnosis of trigeminal neuralgia, was also the doctor who studied the syndrome and gave it a name: Sturge-Weber.
He called my Sturge Weber “partial”. I never asked him to explain what he meant by that. Instead, I went to the medical library and researched it. What I found terrified me.
People with this disorder, that is children born with it, can have paralysis, severe epilepsy, psychiatric disorders, blindness, and intellectual deficits. The only “cure” is to remove the entire effected half of the brain, before the age of 12. With luck, the remaining half picks up all the processes and abilities the bad half was in charge of.
Even though I was older then a child when my TN started at age 25, and been born with no signs or symptoms absent a visual syndrome specific birthmark (ignored until Dr. Schatz noted it), I became obsessed that some of the problems associated with it could still happen to me.
“Could I go blind? Can I become paralyzed?” I asked him during innumerable office visits. To his great credit, he was patient with me answering the same way each time.
“No. That is not going to happen,” he said.
I can walk, talk, think, feel, and see. By all rights, given that I have the disorder, my brain defective in its landscape, maybe that should not have been the case.
I have been disabled by trigeminal neuralgia for over 30 years. As with many of us, I have tried many attempts at a cure, sometimes even lucky enough to be helped but often, unfortunately, also hurt by many of the medications, therapies and surgeries attempted to help stop the pain.
It is so hard to see past the pain, to feel past the pain. I hate it. I hate the disability it has caused and the complete disruption to my life. The encryption of pain into my brain has made my existence smaller and has diminished the possibilities.
It is hard to look past the horror of the many ways and things pain has taken from me. Of the many things and life it has taken from so many of us. On the upside, as hard to find as it often is, there are things we still have that make us continue to fight, continue to be able to have a life.
As the New Year comes in, it is a good time to look past the awfulness of what we have and, as we prepare our midnight toasts, to look carefully into the glass and see it as half, and maybe, sometimes, even more than half full.
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 was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.