U of O
The Center on Brain Injury
Research & Training

A Personal Perspective

The Invisible Epidemic

Luke OneTwo years ago, seventeen year old Luke was on the field running drills and hitting hard with the rest of the team. It was a football practice like any other: high school teens showing the coach their all-star moves, fighting for a starting position for the next Friday night game--until Luke received a sharp blow to the head. He was knocked out instantly, but after a few minutes he regained consciousness and was able to stand. Practice resumed, and afterward, Luke drove himself home. No worries: football is a contact sport--guys expect to get their bell rung a few times.

But a week later, Luke began to have dizzy spells. Since the first of these dizzy spells occurred at night, he mistook it for a dream and didn't mention it to his family. But when he had another spell the next day, it was apparent that something was wrong.

Luke's parents took him to the emergency room where he had a CT scan to help doctors identify the source of the dizziness. Fortunately, the scan showed no internal bleeding, but there were still problems. Luke had sustained a concussion--a traumatic brain injury--and the dizzy spells were one of the symptoms. Although most concussions resolve within a couple of weeks, Luke's brain injury was different. His symptoms persisted, and he eventually needed cognitive therapy, physical therapy, and vision therapy to help him recover.

Following his diagnosis, Luke's doctors prescribed complete cognitive rest. Besides staying home from school, he couldn't watch television, play video games, read, hang out with friends, or do anything that involved noise, stimulation, or concentrating. In short, he couldn't do any of the activities that typically filled his days. This was understandably difficult for Luke, and he tried several times to get back to school and on with his life. But each time, the effort of concentrating and dealing with noise, lights, and the stimulation of school brought on intense headaches. Luke tried to avoid getting a headache by "zoning out," but that meant he was missing critical information, so his schoolwork suffered whether he stayed home or went to school. Luke found himself feeling too well to be home on cognitive rest, but not ready for the challenges of full-time school.

Back at school

Luke 2After missing almost three months of school, Luke was finally ready to go back to classes after winter break. Before the injury, Luke had been in an alternative international school, but he and his parents and teachers agreed that he had missed too much work to catch up with the rest of his class. He transferred to the regular high school program where he could make up the credits he had missed, but he knew few of the other students and even fewer of the teachers.

The school provided several accommodations through a 504 plan, designed to provide supports to students who need them because of physical or medical challenges. For example, his schedule was designed to alternate academically demanding classes with easier ones--English, yoga, biology, study hall. He could have notes taken for him in class, but Luke declined the offer. In literature class, the teacher provided the novel they were studying on tape. However, because Luke had trouble retaining information he received through his eyes and his ears, he had to listen to the tape over and over. He couldn't finish reading the book, and he couldn't remember the parts he had heard.

In spite of the 504 plan, one of the biggest challenges for Luke and his family was helping Luke's teachers understand that he really had learning challenges as a result of his brain injury. To most people, he looked the same as he always had; there was no indication of an injury as far as the teachers could tell. But his outward appearance didn't reflect the deeper issues going on for him. Luke's mother, Lisa, recalls that because the teachers in the regular high school program had never had Luke in class before his injury, "they didn't know that he was a good kid and good student, and I think they just took him at face value and thought he was just using [the brain injury] as an excuse" to take easy classes and be able to take rest breaks. But one teacher made a difference: Luke's literature teacher, says Lisa, "bent over backwards" to support him in class. She understood that even though he looked the same, he needed help remembering things and getting work done. He also needed quiet time or rest breaks to prevent headaches--one way the school could support his recovery.

Luke's social life changed, too. Because of the length of his recovery, Luke was not able to return to the football team during the season he was injured. Football had been very important in his life, but he couldn't even sit on the bench or in the stands. "He couldn't do anything that his peer group was doing,"" recalls Lisa.

Luke took up hunting, and although it was good for him to be able to go outside and be out in nature, "be out with a buddy and walk fields all day,"" as Lisa put it, it wasn't really a substitute for his old social life.

Family and professional support

Since his injury, Luke has had a lot of family support, which has been crucial for his recovery. Although Luke didn't have any problems with depression, Lisa recognized that it was "a real threat, especially as [recovery] goes on longer and longer, because no one can tell the family or the child when they're going to be better." Recognizing Luke's need for emotional support, Lisa "just tried to be there for him and let him cry and not deny that it was scary for him. I did totally understand. But then after a period of time, I tried to cheer him up and remind him that he had made progress and that very few people ever are permanently impaired [by concussion]. I also gave him the freedom to go do the things that he enjoys. I really value that."

Lisa found that she also needed support during Luke's recovery. "I couldn't just sit down and learn everything that I needed to [know] in just one day. And also, his challenges evolved. I needed to learn different things at different stages." Support was available from several sources. The athletic trainer at Luke's high school has a particular interest in TBI and sports concussion. She provided Lisa with information about what Luke was going through and helped her get answers for all her questions.

Fortunately, Luke's family has medical insurance that covered most of the medical and rehabilitation expenses. The pediatrician who managed Luke's recovery specializes in sports injuries and is extremely knowledgeable in the area of sports concussion. He directed the family to a team of rehabilitation professionals who, according to Lisa, "really helped him with some coping skills, like writing things down, and encouraged him to use a planner. He needed to accept that he couldn't keep things in his head. He needed to write them down, and then look back at it." Luke also learned new strategies for studying. For example, rather than just reading through a chapter once to prepare for a test, Luke now goes over the concepts several times, maybe explaining it to someone or quizzing himself on the vocabulary. Rehabilitation "really helped him understand what was changing in his life and where he was deficient and what he was going to need to do to adjust," says Lisa.

Moving forward

More than two years after the injury, some things have changed for Luke. He is still on medication and has some effects from it. He's a "little bit absent-minded. Still feels his brain being challenged when he thinks really hard." He still uses different strategies to learn and organize things, and some things take longer for him to do. Luke is aware that the effects of TBI can be long term, and this sometimes causes him to be concerned about his future. Lisa recalls, "he said, 'One day I'm going to be a father, and I'm not going to remember what my children do.'"

In many ways, life has returned to normal for Luke. He is playing football again, he has a job and works a lot of hours, and he's working hard in school. He still finds time to go out with friends. "He wants to do it all," says Lisa. But Luke has learned he has to do some things differently now. If he doesn't get enough rest and enough to eat and plenty of liquids, the physical stress can still trigger headaches.

Although most teenagers think they are invincible, Luke now understands that is just not the case. Because of his injury, Luke has had to learn that he has limits. And because of the support he received after his injury, he has the strategies and skills he needs to cope with those challenges.