22: Waiting for John to Remember

22: Waiting for John to Remember

From Chicken Soup for the Soul: Recovering from Traumatic Brain Injuries

Waiting for John to Remember

Music in the soul can be heard by the universe.

~Lao Tzu

My son John loved to play hockey. It was a big part of his life, even when he was little. And it didn’t matter where the game was—in the driveway with boys from the neighborhood, knee hockey in the kitchen, in the basement.

John played ice hockey for the local travel team. He enjoyed the excitement and challenge of the game and being in the locker room with his friends. While I worried about John playing hockey, I was reassured that the peewee division banned checking.

On December 1, 2012, when he was eleven years old, John sustained a traumatic brain injury. In a short-handed play, John cleared the puck from his defensive zone. His teammate picked it up near center ice and rushed for a breakaway. An opposing player didn’t like that, and went after John. I watched in disbelief as the opponent came up behind John and used his elbow deliberately and strongly to hit my son’s head into the boards.

“Johnny!” My heart raced as I banged on the glass of the ice rink. John fell backward and hit his head again on the ice. This couldn’t be happening. And it never should have happened in a non-checking division, especially when John didn’t have possession of the puck.

I knew this was bad. I had watched my sons play hockey for ten years, and seen them fall on the ice. But this time was different. The coaches helped him off the ice and sat him on the bench. I immediately ran to his side. I wanted him out of the game.

I wanted to believe that John wasn’t hurt as badly as it appeared. He seemed dazed, but he was conscious. He told me his head hurt a lot and I was scared. His eyes were widely dilated and I knew that was a bad sign. But the emergency pediatrician in the evening clinic didn’t seem alarmed. She said he had a concussion and to watch him. So we did.

The next day we had tickets for a show in the city and we went. But John started acting strangely. He couldn’t walk well and he leaned against the walls of the theater for support. I called his regular pediatrician when we got home and made an appointment for the next day.

John’s symptoms worsened. By the time he arrived in the doctor’s office, he had no interest in anything. He was confused and withdrawn. The doctor performed basic neurological tests. I knew we had a serious issue when John couldn’t recite the months of the year backward from December. He couldn’t remember what came before October. There were other clues, too. I offered to make scrambled eggs for him one morning a few days after his injury.

“Please get some eggs from the refrigerator for me,” I asked.

“Sure,” John said. But he paused by the door and asked, “What does an egg look like?”

I tried not to look shocked, but I was starting to panic.

I thought all he had to do was rest and he would be back to normal in a week or two. Unfortunately, I wasn’t yet aware how “not normal” our lives would become during the following month. I watched helplessly as we discovered how seriously impacted John’s brain was. Within the next two weeks, his condition continued to deteriorate instead of improve. John couldn’t recognize familiar people or places. He couldn’t recall basic factual information. It was alarming that he didn’t know that the inside of an oven was hot, an electric outlet was dangerous, or what the difference was between “real” food and toy, or “fake,” food. He didn’t remember much of anything prior to his injury. It frightened us to see the extent of his amnesia. In his actions and abilities, John seemed to have regressed to the level of a five-year-old boy.

I continued to talk to his pediatrician on a daily basis, but quickly looked for a pediatric neurologist. Finding someone who had seen a case like John’s was difficult. A few doctors suggested that he was malingering and that these symptoms couldn’t be happening from a concussion. John had an MRI and it showed normal brain structure, which was somewhat reassuring. But the memory loss persisted and he was clearly unable to function at a sixth-grade level. John couldn’t go to school. At this point he was reading kindergarten level books, although he preferred that I read them to him. He lost even the most basic math skills. Friends came to visit. He had no idea who some of them were. John was also easily startled and refused to walk along the sidewalks, fearing that the passing cars on the street would hit him.

I spent most of the first three weeks crying, devastated. I was angry, angry that this happened to John and to us. I wanted to find the kid who hit him and let him know what he did to all of us. But most of all, I desperately wanted my son back. This was no longer the person we knew and loved. John spent most of that time staring vacantly—and humming music—and that was the only thing that linked us to his past.

We have a musical household. John and his brothers play violin and all listen to the classical music station on the radio daily. John absentmindedly hummed tunes he played years ago. Bits of melody swirled around inside his head and seemed to comfort him as he played with his Legos, the only other thing he could still do. It was Christmastime and the radio played Christmas carols and songs. John memorized the words to every single one he heard.

Then he started to play the piano, which might not sound strange except that he hadn’t played since kindergarten. John picked out his Vivaldi violin concerto on the piano perfectly. It was bizarre, but it made him happy and seeing him happy made us happy too. After four weeks, I gave him the violin again. Although he could not identify the numbered measures on the orchestral score, he could still read music and play the violin. Just before the injury, he was accepted into Westchester’s All-County Orchestra with a concert in three months. I am happy to say that he participated in the performance. Having the music definitely helped his recovery.

Unlike a broken bone, there isn’t much to do for a brain injury but wait and pray. Two months after his injury, he returned to school on a part-time basis. Mostly, he sat in classes and observed. His teachers realized he couldn’t do homework and stopped sending it home. They reported seeing him as a significantly different person in the classroom compared with prior to the injury. We all waited for John to heal. John’s friends were loyal and helped him every day in school to relearn normal activities (such as finding his classroom and opening his locker.) The school district also made accommodations for him. Three months after his injury, he was able to tell me stories about his day in school. But he still couldn’t do the homework. It was practically June before John made progress in school. He had tutors after school and throughout the summer to help him relearn or remember things he needed to know.

It is now eleven months since John’s injury. He looks like an ordinary seventh- grade student, walking to school and doing his homework and enjoying the company of his friends. There are still pieces missing from his past, and occasionally he asks questions that remind me that there are things he still cannot recall. But for the most part, life is good for him and that makes us all very grateful.

I always had faith that we would find a way for John to reconnect his life again. I never gave up hope that he would recover and thrive once more. I wished I could have met someone who had experienced amnesia so we would have known what to expect. In writing this, I hope I can inspire someone else to believe that they or their loved one will improve too.

~Anita Dziwura

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