Speak Up

Enjoy essays and poetry by people living with neurologic disorders and their caregivers. Readers can also find letters to the editor.

Monday, February 6, 2017

Words of Hope


The pain of small fiber neuropathy drove the author to consider the unthinkable, but a letter from her daughter helped save her.


When I found the note on my bed, I could barely read it. But there it was: scribbled in my daughter's wobbly lines with hearts drawn in the corners, words stabbing me almost as much as the physical pain. She was sorry I was sick and she wanted me to be okay.

My 8-year-old's sentiments struck a deep chord, her words reflecting my own struggle with questions I would ask over and over. Why do my kids have to see me like this? Why can't I be normal, like everyone else?

These are questions I've asked ever since being diagnosed with small fiber neuropathy, a condition affecting small fiber nerves in the skin and autonomic nervous system that cause tingling, shooting pains, itching, numbness, and other strange sensations that migrate all over my body. I also get migraines. That day, four years ago, when my daughter left the note, was one of my worst. I'd pushed it aside to grab a trash can to my chest, rocking back and forth with waves of nausea.

The pain was so intense, I thought life wasn't worth living. I'd never had thoughts like that before: sincere feelings that I wanted to give up on life. The pain was very strong, intense. And my will wasn't strong enough. Even as I opened my eyes and saw the note—a blurry scrap of paper on top of rumpled sheets—the feeling was still there.

But then I read her words and something clicked. For too long I'd tried to deal with everything on my own. In the beginning I'd gone from doctor to doctor but eventually stopped, no diagnosis in hand, no advice or relief in sight. Now I realized I'd given up too soon. My life was consumed by fear. I feared the pain, the attacks that would come and cause me to have the horrific thoughts, ones a loving wife and mother should never have. This had to stop. I realized my life wasn't over. I had too much to live for. I knew I had to go back and pound the pavement again and not stop until I found answers and relief. I feared side effects from drugs, but at that point I feared continuing my life in that state even more.

Today, two years after my daughter scribbled that note, I no longer experience that level of pain. With a diagnosis in hand, I now have medication with minimal side effects. I use alternative therapies along with the drugs to bring much-needed relief. I have a diet and exercise plan that helps immensely. But most of all, I have a life free of those terrible thoughts, a life that still isn't easy but is definitely worth living.

I don't know what the future holds, but I do know I will never return to that state of mind. I'll do whatever it takes to live in balance with small fiber neuropathy, and I will treasure and appreciate many blessings in this life, including sweet words scribbled on a piece of paper from my precious young daughter. I've kept that note as a reminder of a place I will never go to again.

Thanks to her words, I recognize that life is worth living. I begin each day thankful for being strong and persistent enough to ask for help. Each morning I look at my reflection with pride. I feel triumphant that, for now, I've won.


​Teresa Davenport has a background in journalism and lives with her husband and children in Marietta, GA. She writes about small fiber neuropathy to raise awareness of the condition. You can reach her at davenportteresa@comcast.net.