November 17, 2010
More than meets the eye: Burke wants you to look beyond his disability
UW Medical Center patient Eric Burke probably realizes people stare at him when hes out on the street or in the halls of the medical center. Its because of the wheelchair, and how he looks a bit different from the average person. People look at him in the same way they do when they see Stephen Hawking, the famous physicist, who suffers from neuro-muscular dystrophy.
Burke, 36, was born with cerebral palsy. He has almost complete tetraplegia, also known as quadriplegia, a paralysis that results in the partial or total loss of use of the limbs and torso, and severe speech and swallowing impairments.
Plagued by bouts of recurring pneumonia and illness in recent years that sometimes required hospitalization, he decided after consulting with a team of UW Medicine doctors to have a laryngotracheal separation. It was a big decision for him and the medical team, because the surgery meant he would have to forego the ability to use his vocal folds.
Erics speech was difficult to understand prior to surgery, but even the little bit of verbal communication he used in everyday life was sacrificed for the safety and health of his lungs and the ability to eat. The surgery was a success. Burke continues to communicate with an augmentative and alternative assistive communication device known as a Dynavox Vmax.
To help introduce readers to Burke, its important to set the scene for what hes encountered from a medical standpoint. But at the same time, he and his medical team wanted to make it clear that theres more to him than just the medical facts. “He has a lot to say,” said Deanna Britton, a speech-language pathologist in Rehabilitation Medicine.
Burke said that life is better since he had the laryngotracheal separation, even though it meant that he had to lose his voice. “If I didnt have surgery, I would have pneumonia, diarrhea, stomach aches, and I wouldnt be able to eat,” he said via e-mail. “I have not been hospitalized or sick since the surgery. I was sick all of the time before. I can eat normally now. Before the surgery, I had to eat through a tube in my stomach. Also, I can go back to college because I do not choke and cough in class anymore.”
What foods does he now enjoy eating? “Ice cream, potatoes, grilled cheese sandwiches, my moms fried chicken and candy,” he said.
Burke said hed like to study more math in school and is keeping his mind open to other topics. He currently attends classes at Shoreline Community College. Burke graduated from Seattles Nathan Hale High School in 1995.
He has used the Dynavox since high school. It was hard to get used to at first, but now he really likes using it. “I use my Dynavox with a switch by my head. I can use the mouse [like on a computer] and move it with a dot on my glasses,” he said. He has an electric wheelchair that he drives, but he needs help sometimes with the driving.
He likes to travel, and enjoys watching sports. Burke said he goes to Mariners games and to spring training. He said that he was sad when Ken Griffey Jr. retired earlier this year. “He loved playing baseball and I will miss him very much,” Burke said.
Why did Burke decide to share this very personal story? He said that he would like to help other people. “I want people to be more understanding and have knowledge about me so they dont judge and stare at me like Im a freak” he said. It doesnt seem like much to ask.
Eric Burke has a big health care team at UW Medical Center. As one doctor described it, there are almost 20 people he interacts with on a regular basis, in addition to care he receives at home.
“Everyone helps me at the U,” Burke said.
The team includes: Rehabilitation Medicine, including Speech Pathology and Rehabilitation Counseling: Deanna Britton, Curt Johnson; Occupational Therapy: Ann Buzaid, Kenneth Jelinek; Physical Therapy: Peg ORourke; Laryngology, Otolaryngology/ Head & Neck Surgery: Dr. Al Merati; Medicine/ Pulmonary & Critical Care Division: Dr. Josh Benditt, Louie Boitano.