No one really wants to go to the doctor. But sometimes, when you get to pretend you’re Peter Pan in physical therapy or make your own super balls with hearing aid mold material at the audiologist, exceptions can be made.
My name is Megan Zahneis. I’m 18 years old, a senior in high school, and I live in West Chester, Ohio.
I have a very rare disorder called HSAN II (Hereditary Sensory and Autonomic Neuropathy, type 2), which prevents me from feeling pain, temperature, and touch quite like everyone else. I also have profound hearing loss – I am deaf without the use of bilateral cochlear implants – and I don’t have reflexes, nor do I have the ability to regulate my body temperature.
I spent my first 38 days in the NICU at Children’s, and have been to one or another of their campuses just about every week since. Needless to say, that’s a lot of doctor’s appointments! So I really do appreciate the fact that the staff goes the extra mile to be sure I have the best possible experience there, whether it be striking up a conversation as I sign in, calming me before I receive anesthesia, or answering my questions, and not just my parents’, during an appointment. They make me feel comfortable in situations that aren’t supposed to be comfortable.
Medically, I am a recipe for disaster. I’ve had eighteen surgeries, including several on my eyes, ears, mouth, stomach, back and hips. I’ve had to endure one health issue after another, and it certainly hasn’t been easy. I face a lot of social and emotional issues as a result of my disorder as well.
As you might guess, there are a lot of things my disorder renders me unable to do. Because I’m deaf, for example, I can’t wake myself up in the mornings. I don’t have very good balance. I’m unable to control my tongue lateralization well enough to enunciate certain words or even to pronounce the letter “z” that begins in my last name. I can’t button my own shirts, tie my own shoes, or eat many foods.
And while that may sound like a long list – and it is – the list of the things I can do is much longer. I owe much of that to the people of Cincinnati Children’s.
Cincinnati Children’s has helped me build my self-confidence: from my audiologist, who drew me a get-well poster for my first cochlear implant surgery; to my psychologist, who has come in on her off days to meet with me; to the members of the feeding team, who changed their busy schedules to fit mine; to my orthopedic surgeon, who does everything he can to make treatment the best for me and not just my injury; to my physical therapist, who personally called to congratulate me when I won a contest.
My parents and I turn to Cincinnati Children’s for guidance in learning how to cope with my extremely rare condition, and each time, we have been met with smiles, open arms and support. Through nearly 18 years of weekly visits to various Children’s campuses, I’ve seen nearly every department. And having had 18 surgeries, it seems only natural that I’d learn to associate the hospital with pain and suffering. Not so.
Today I realize that, along with adversity, some of my greatest triumphs have transpired within those walls. Children’s is where I took my first steps, where I graduated from pony walkers to walkers to canes and crutches to standing on my own feet. It’s where I got my cochlear implants, twin miracle worker bionic ears that gave me the gift of sound. Where my scoliosis-ravaged back straightened, where I learned to tie my shoes and button my shirts. It’s where I grew up and where I learned to accept myself.
It’s safe to say that my future plans wouldn’t be possible without my experience at Cincinnati Children’s. I plan on attending Miami University in Oxford, Ohio this fall as a member of the University Academic Scholars Program in Writing for the Media division. I was also recently named a Stamps Leadership Scholar by the Stamps Family Charitable Foundation. My work with Major League Baseball as a correspondent has inspired me to pursue a career in journalism; I’m passionate about using my writing to give a voice to others, especially those with special needs. I dream of publishing a memoir and of becoming a professional public speaker so that I can continue my quest to advocate for others and make a difference.