This story is based on a conversation with Brooke Parrish, 29, a higher education admissions advisor and TikToker who lives in Louisville, Kentucky. It has been edited for length and clarity.
The doctors in the rural area in Kentucky, where I was born in March 1996, were unsure of my condition when I was born.
They referred me to a hospital in Louisville, Kentucky, a two-hour drive away, where I was diagnosed with Pfeiffer syndrome.
The genetic condition — which is caused by early fusion of the bones in the uterus — strikes people differently. In my case, it led to the premature fusion of my skull and elbows, also affecting some of my fingers and toes.
My parents, Angela and Chip, now 55, relocated to Louisville, where I had several cranial procedures when I was young.
Courtesy of Brooke Parrish
Mom and Dad were incredibly supportive. Mom didn’t treat me any differently, as if I were fragile. I would climb the stairs just as much as my cousins did.
I tried not to limit myself, despite being challenged by the lower range of motion in my arms. I couldn’t lift them beyond my breastbone and could only touch my face with two fingers.
I never saw myself falling in love or getting married
Meanwhile, the pain was intense from the operations and healing.
There is a difference between knowing that you have a certain condition and accepting the reality of it. I didn’t speak about it for years.
In fact, I internalized it. I never saw myself falling in love or getting married.
Thankfully, I wasn’t bullied, but the other kids would often stare at me. Between the ages of 13 and 18, I grew bangs to cover my eyes, which were my main concern. I could hardly see where I was going.
Courtesy of Brooke Parrish
Then, as I grew older, I began to gain confidence. My bangs got shorter over the years. It was a sign that I’d become more accepting of myself.
I realized that going through so much at a young age gave me the strength and resilience I needed to overcome challenges. Over time, I began to accept my differences.
I wished I could have given my younger self a hug and told her that she’d become grounded and happy.
I started dating at the age of 18
When I got a job as a cashier at a retail store, I dealt with the stares I got by being super friendly. I’d strike up a conversation, rather than deal with any awkwardness. It worked. People were receptive.
I went on several dates between 18 and 21 because I had a lot of catching up to do.
My preference was online dating. Unfortunately, as much as I would have liked someone to fall for my personality, I wanted the men on the site to make an initial decision based on my photograph. I was fully transparent.
Courtesy of Brook Parrish
One guy I was involved with for a few months couldn’t cope with the stares. He couldn’t handle what came with someone with multiple disabilities. And that’s OK. It’s not for everyone.
I met my future husband, Joe, now 30, on Tinder eight years ago. It was cute because, two days before our official first date, he popped into the store I worked in unannounced.
He said that he wanted to take away the nerves of getting ready and driving to our first date. We walked around the store to get to know each other a little. He was right because our first date was more relaxed.
Courtesy of Brooke Parrish
We’ve been together ever since, and our beautiful wedding was in October 2021. I never expected a man to be so attentive and devoted. He does anything for me that I can’t do with my arms. He can braid my hair and create updos. He puts on my necklaces and earrings. It’s the little things that count, and they’re wonderful.
Social media is a way of spreading my message of hope
I want people with facial differences to know that, through TikTok, you can feel powerful and proud. I’ve had an overwhelming response from people with or without craniofacial disabilities.
One of my pen pals is a 15-year-old with a condition like mine. It’s like looking in a mirror. I want her to be strong, open about who she is, and to allow other people to love and help her.
