About Us Stories
People Are Staring At You Because You're Pretty
"Your condition is considered life-threatening, Carolyn. Please follow your doctor's advice and be admitted to the hospital," the nurse urged me over the phone.
I could barely respond. My Dystonia had left me so breathless that I was unable to speak more than a couple words before stopping to gasp for air.
Since I was a teenager, Dystonia had affected my life. When I spoke, others often could not understand me due to Spasmodic Dysphonia. Because of Cervical Dystonia (Spasmodic Torticollis), I walked leaning to one side.
Keeping my balance could be tricky, especially when going up or down a set of stairs.
Both types of Segmental Dystonia also greatly affected my breathing. Despite using asthma inhalers, oral steroids (such as Prednisone), and other medications, I wheezed loudly and was always very short of breath.
But the worst part of having Dystonia was dealing with people's stares and questions. When asked about my unique postures or tremors, I would become self-conscious or embarrassed.
One day I mentioned this to my good friend Duane. "Carolyn," he explained gently, "people aren't staring at you because you have Dystonia. They're staring at you because you're pretty."
Duane's kind words brought tears to my eyes. How thoughtful of him to be able to look beyond my physical limitations and to see something more!
Over the years, family and friends have helped me to deal with my severe Dystonia. In fact, nowadays I can even look back and see how Dystonia has blessed my life.
I know that my health struggles have made me a more empathetic and compassionate person. When I see others who struggle with a chronic illness, I recognize and admire their courage.
Thanks to having Dystonia, I have also learned to look for the positive side of situations. I'm very grateful for the days when I am able to accomplish what I'd like.
Recently my neurologist told me that I am an inspiration to others who have a disability. He, my friend Duane, and many others would agree with me that despite having Dystonia, my life is very blessed.
Carolyn Bolz
orangeblossom813@charter.net