Doctor explains what it’s like to live with condition



Switching from slide to slide, a different song played.

Dr. Michael Goodman encouraged the Crothersville elementary and junior high students to rock out.

It didn’t matter what they looked like while they sang or put their hands in the air. All that mattered is that they were having fun and didn’t worry about what other people thought about them.

No matter the situation, show kindness to others, and life will be much better, said Goodman, a pediatric hospitalist at Riley Hospital for Children at Indiana University Health in Indianapolis.

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For the past 38 years, Goodman said he has tried to keep that in mind while living with Treacher Collins syndrome, a condition that affects the development of bones and other tissues of the face.

Despite varying signs and symptoms, most affected individuals have underdeveloped facial bones, particularly the cheek bones, and a very small jaw and chin, according to the U.S. National Library of Medicine.

Some also are born with an opening in the roof of the mouth called a cleft palate. In severe cases, underdevelopment of the facial bones may restrict a person’s airway, causing potentially life-threatening respiratory problems, according to the U.S. National Library of Medicine.

People with the syndrome also often have eyes that slant downward, sparse eyelashes and a notch in the lower eyelids. Some also have other eye abnormalities that can lead to vision loss.

The condition is characterized by absent, small or unusually formed ears. Hearing loss occurs in about half of all affected people and is caused by defects of the three small bones in the middle ear, which transmit sound, or by underdevelopment of the ear canal, according to the U.S. National Library of Medicine.

One thing Goodman stressed is people with Treacher Collins syndrome usually have normal intelligence.

“When someone looks different in their face, it does not mean that their intelligence is necessarily lower than yours,” Goodman said during the March 8 program at Crothersville. “It doesn’t mean they are not smart. Intelligence in Treacher Collins is normal, so I want to drive that home.”

Goodman began his program asking the third- through eighth-graders if they had seen the movie or read the book “Wonder.” In that story, August “Auggie” Pullman deals with the ups and downs of living with the same facial disorder as Goodman.

After “Tubthumping (I Get Knocked Down)” by Chumbawamba played, Goodman said it’s a song about the importance of getting back up again after getting knocked down.

“We all have to do that, some more than others,” Goodman said.

Montell Jordan’s “This Is How We Do It” played so Goodman could tell the students the topics he was going to cover in the presentation.

“If any of you have a chronic medical condition or something you’re always going to the doctor for, please do not let that define who you are. Make it a part of you, but don’t make it all of you because if I defined myself by Treacher Collins, I’m not talking to you today, I can guarantee you that much.”

Dr. Michael Goodman, a pediatric hospitalist at Riley Hospital for Children at Indiana University Health in Indianapolis, on living with Treacher Collins syndrome

Then “It’s My Life” by Bon Jovi played as Goodman began talking about Treacher Collins syndrome. He said the bones in his face and jaw are a little too small because they didn’t grow as much as they should have, resulting in a lower jawbone and a small chin.

“Because of that, you can have problems breathing, and so you might need a tube in your neck called a tracheostomy,” he said.

He also talked about a cleft palate, his cheekbones looking small and bones in his ears being smaller and leading to hearing loss.

Growing up in Valparaiso in northwestern Indiana, Goodman said he was a normal kid in a lot of respects. He liked to make noise, play with Legos and Transformers, play video games and follow sports.

“Be True to Your School” by The Beach Boys played before Goodman talked about going to school in Valparaiso and then continuing his education for eight years and completing a three-year residency to become a pediatric hospitalist.

Goodman said his elementary years were good, but middle school and high school were difficult having to deal with people teasing him because he looked different.

“In elementary, I loved it and got treated really well,” he said. “Middle and high school were really, really rough. I got teased every day pretty much, and it really made me want to not go to school some days or there were days I was hoping certain classmates of mine would not show up or be absent so I wouldn’t have to deal with them.”

Goodman said he got to the point where he had no self-confidence or self-worth.

He noticed when people whispered, stared, pointed or ran into things while looking at him, and it took him a while to not let it bother him.

“If you see someone that looks a little different, go up to them and ask them why they look different. Don’t ask what’s wrong with them,” he said. “Only ask why they look different because I would much rather have that and let me tell you why I’m different.”

He said he is a person and is not defined by Treacher Collins syndrome.

“If any of you have a chronic medical condition or something you’re always going to the doctor for, please do not let that define who you are,” he said. “Make it a part of you, but don’t make it all of you because if I defined myself by Treacher Collins, I’m not talking to you today, I can guarantee you that much.”

Goodman shifted gears to talk about “Wonder.” He played a song of the same name by Natalie Merchant, noting that is where the book got its name.

He shared what the students have in common with Auggie and the good and bad qualities about other characters in “Wonder.”

Tim McGraw’s “Humble and Kind” preceded Goodman’s talk about being kind and controlling what you can control.

People can’t control whether others genuinely like them or not, what’s said to them or about them and any conditions they are born with, like Treacher Collins syndrome. They just have to learn to accept it, Goodman said.

“All of this comes from outside of ourselves. We have absolutely no control over that,” he said. “Here’s the key: You have to be kind to yourself about things that you do not have control over. It took me 20 to 30 years to realize this. I’m 38, so it took me that long to realize to stop beating myself up over what I was born with because I beat myself up a lot on the inside.”

With Michael Jackson’s song “Man in the Mirror” playing, Goodman said he likes its message: If you want to change something, you have to look in the mirror and start with yourself.

That includes making good choices with respect to kindness, he said.

“If you see someone who looks or acts different, try to find something in common with them,” he said. “Don’t focus on if they are looking or acting different.”

If a person is being bullied or teased, he or she needs to try to block it out and not let it get to them, Goodman said. That message was illustrated with Taylor Swift’s “Shake It Off.”

He said people have control over their actions and reactions, and resorting to violence is not the correct response. It’s best to ignore them and just walk away, he said.

“Please, please, please love and believe in yourself,” Goodman told the students. “If there’s something bad or negative in your life, you need to work and find something positive about it. … Everything negative or bad that happens in your life, there is something good that comes out of it. It just may not be very, very obvious.”

Goodman also told the students if they ever feel down about themselves or sad, they need to talk to an adult.

“My parents were great, but I did not tell them everything that was going on in my life, and I got to some really dark places when I was younger,” he said. “If you’re feeling down about yourself, please, please, please tell an adult.”

Another big message was the golden rule: Treat others the way you would want to be treated.

That resonated with Crothersville third-graders Jude Howard and Bella Riley.

Jude said it’s important to always choose kind, and Bella said that’s especially true if someone doesn’t look or act the same as you.

“So they don’t feel left out or different and so they also feel loved like everybody else,” Bella said. “I think it’s important to always be nice.”

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Anyone interested in having Dr. Michael Goodman do an “Auggie Talk” should send an email to [email protected].

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