I look in the mirror. And I’m old.
I don’t feel my age, for the most part. That is not to say I feel as though I am still in my twenties. But, thankfully I am able to do most of what I want and all of what I need.
It is the ironic gratitude of having disabling pain confined only to my face and eye – as opposed to the rest of my body.
When I see the image looking back at me sometimes I am dumbstruck. Who is that person? I expect to see my 25-year old face, not the reality of my 61 years.
I shake my head to clear it. I remember that was who I was then, before the pain started. The then when I had hopes and dreams. When being a singer or an actress was a possibility. When the world was still at my feet.
I see the old me in the mirror and I ask myself, “What have I done with my life?”
Instead, I have been disabled for 30+ years. I spent many of those years essentially housebound, abandoned by family, friends long gone.
It is a bad place to be in, one that only leads down the road of desperation and despair. Trying to think happy thoughts to change how I feel is an exercise in silliness. A solution that works in Disney films, but not in real life. Maybe a good thought helps for a second or even a minute. But thinking of flowers or a puppy is not a solution.
Wait a minute, I tell myself. What have I done in the last 30+ years? Is it really nothing?
I wrote a book yes, and now I have this column. I am very grateful for both but there is something else I have done. Something that many of us have done, but often do not see as worthwhile.
To stop or decrease the pain, I have had 12 brain surgeries. That is not an accomplishment about which I like to boast, but I have fought the good fight and I continue to do so. I have been able to keep my independence. That in itself is a major accomplishment.
How many of us have taken drug upon drug, fighting side effects that disable in their own way? How many therapies and procedures have we agreed to, sometimes painful ones that did not work or made us worse? How many surgeries, some causing side effects that disabled in their own way?
I am not that 25-year old girl. I miss her. I miss the promise of her. It hurts to look at my 61-year old face and be reminded of the lost potential.
When someone says me, “What a shame, you could have done so much,” my answer is often, “No. I couldn’t because of the pain.”
Left unsaid is what I know I accomplished instead.
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.