Compassionate Care

The Definition of Success

Focusing on what they can control, these patients live life on their own terms

Like many first-year college students, Emily is considering her major and working on her time-management skills. She hopes to join student clubs and get a part-time job.

To help her stay focused, Emily draws on a well of strength that comes from a lifetime of contending with a rare, difficult medical condition that affects her physical function and appearance. She has been through more than 10 surgeries.

“The surgeries brought physical, men­tal, social and emotional challenges that required a certain frame of mind to over­come,” Emily said. “While physical pain is often uncomfortable, I realized it was easier to deal with than other types.”

A commitment to self

Emily has Treacher Collins syndrome, which affects craniofacial development. She has undergone many of her treatments at Shriners Hospitals for Children — Chicago, under the care of Pravin K. Patel, M.D., plas­tic surgeon. “I have hearing aids due to my hearing loss, a smaller than average jaw, a gas­tronomy tube and severe sleep apnea,” Emily explained. She said reconstructive surgeries helped her eat, sleep and breathe better.

As she coped with each treatment, Emily began to notice a pattern. “The times when I distracted myself from my current situation and tried the best I could to continue with regular life were the times I recovered faster.”

Finding something that was under her control gave her purpose. “I invested all my energy into performing well in school,” Emily said. “In the process, I was subcon­sciously developing a positive mentality.”

Experience has taught Emily not to look for success or acceptance outside herself. “My version of success is reaching satisfaction with where you are in life,” she said. “Life is never perfect, and challenges always come up, but success is feeling satisfied despite these challenges.” The team approach to care at Shriners Hospitals has helped Emily live a healthy, full life.

Her advice to patients and families who are living with a difficult diagnosis or similar challenge includes making space for self-care and self-reflection. “Self-expression is important, especially when you can’t put emotions into words,” she said. “Your emo­tions, thoughts and feelings are valid.

“If you ever feel nobody understands your challenges but you, know that I felt the same way,” she said. “Everyone has. Know that you are not alone, and you will overcome.”

A triumph of spirit

Ryan, 43, is a successful business owner and fitness consultant with an impressive client list. But it wasn’t always this way. Ryan’s journey has taken twists and turns and at times severely tested his mettle. Now he wants to tell his story, to motivate and inspire others.

Ryan was born with multiple differences, including a clubbed foot on his right leg, which was 7 centimeters shorter than his left. At Shriners Hospital for Children — Canada, he under­went numerous surgeries and other corrective procedures. Thanks to the treatment he received combined with his own efforts, Ryan became physically fit. But not, he said, without going through what he refers to as the “Dark Ages.”

Even though he comes from a supportive family, he said, his condition became a burden that was difficult for him to bear. He began seeing himself as an outcast, angry with people who did not have to worry about losing a leg or being paralyzed. To deal with the pain, Ryan said, he started hanging around with the wrong crowd and getting into a lot of fights.

“I wanted people to hurt like I did, and I wanted them to be afraid,” he admitted. As things went from bad to worse for Ryan, he left his family.

“I lived on the streets, even though my parents loved me,” he said. “I slept wherever I could, regardless of the weather. I was homeless because I was stubborn, proud and stupid.”

Still, something drove him to continue his fitness training. One day, his coach gave him an ultimatum: If Ryan did not change his lifestyle, he would stop mentoring him.

Returning home, Ryan said he realized that for each negative moment he experienced, there was also a positive one. Instead of considering his physical limitations as weaknesses, he came to understand them as strengths. The physical difficulties he experienced as a child had led him to become passionate about training. Suddenly Ryan saw that he could use that passion to help others.

Leading by example, Ryan trained and participated in bodybuilding competitions. Now he has a purple belt in jiu jitsu and co-owns a fitness studio. His clients include professional athletes and former Olympians. Ryan credits Shriners Hospitals for Children — Canada with giving him the tools to succeed. “I just have one message: Eliminate negative thoughts or actions, because there will always be someone better looking, stronger or faster,” he said. “However, never let them work harder than you!”