A Pained Life: Living on Hope

By Carol Levy, Columnist

"Never lose hope. Storms make people stronger and never last forever." Roy T. Bennett 

"He that lives upon hope will die fasting." Benjamin Franklin

"Hope is the thing with feathers That perches in the soul And sings the tune without the words And never stops at all."  Emily Dickinson

I could go on and on. Why am I in this mood?

I have an appointment tomorrow with a new doctor. He spoke at our trigeminal neuralgia support group some weeks back, so I know he understands the condition and the pain.

He also specializes in neuropathic pain. This is a source of pain that occurs as a result of diseases, lesions or injuries to the nervous system.

As a result of the many neurosurgical interventions I have had, this -- as opposed to “merely” trigeminal neuralgia -- appears to be the cause of my pain.

I was very lucky in that the worst of my trigeminal neuralgia pain -- constant, triggered and spontaneous – suddenly went into remission. Unfortunately, the eye pain that keeps me in pain and disabled remains.

Almost every doctor I have seen -- neurosurgeons, neurologists, ophthalmologists and neuro-opthalmologists -- have tended to have the same response to my plaintive cry: "What causes this pain when I use my eyes? Why do I still have it? Isn't there anything that can be done?”  

Shoulders are shrugged, eyebrows raised. “I dunno” is the usual response.

I have heard that answer too many times to count. I know this is the standard answer. I also know it is probably the true answer.

And yet.

I am anxious about my appointment tomorrow. Maybe this doctor, maybe he will be the one who finally says, “Yes. This is why your eye pain persists. Here is a prescription (or a treatment or heck, even a surgery, I'm game if it is a real answer). This will fix it.”

In my heart and mind, I know I am probably setting myself up for another disappointment.

But how do you stop hope? Especially when hope is all that keeps you going. Maybe today, maybe tomorrow. Maybe someday.  Maybe. Maybe. Maybe my pain will stop or be reduced to the level where I can work and be out in the world for as long and as much as I want. Dickinson said it. Hope "never stops at all.”

Bennett is wrong. My storm of living with pain has probably made me stronger. More resilient and more dogged, but it has lasted for 39 years. My storm of pain is a forever storm. Maybe it is time to let the hope go.

Franklin may have said it best, living on hope means that I die fasting and hungry. But what choice do I have?  Giving up hope would mean giving up the one thing that keeps me going. Even if the hope is false.

And who knows? Maybe tomorrow's doctor will have the magic pill.

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.