By the time I was 5 years old, I was experiencing 100 seizures a day. I would often fall and bang my head on the floor or another hard object. The only way my mom could shower and dress for work without worrying was to prop me up with soft pillows and place me in front of the television. She usually turned on Mister Rogers' Neighborhood, and for the length of the show I never had a single seizure.
Something in Mister Rogers’ voice must have calmed the electrical circuits in my injured brain and allowed my body some rest. My mother and I performed this ritual every work day for two years. I began to consider Mister Rogers my real friend and not just my TV friend. I talked back to the TV screen, saying, “Yes, I will be your good neighbor!”
Eventually, my neurologists determined that I had contracted a rare brain disease called Rasmussen's encephalitis. They theorized that a slow-growing virus was killing cells in the left side of my brain and causing my seizures. The only treatment was a hemispherectomy, a surgery to remove half of my brain.
In advance of my surgery, my mother called the TV studio where Mister Rogers’ Neighborhood was produced. She explained to his assistant that the show was a sanctuary for me and that I believed Mister Rogers was speaking directly to me when he sang his song, “Won’t You Be My Neighbor.” She also told the assistant about my seizures and my upcoming surgery and the fact that I never had a seizure while watching his show. My mother hoped that Mister Rogers’ assistant would send an autographed photo of my TV friend, or even a note from him assuring me that I was going to be okay.
One week before my hemispherectomy, the telephone rang. My mother spoke for a few minutes, then handed the phone to me, telling me that a friend wanted to talk to me. I was excited that someone calling himself a friend was on the phone for me. Friendships were difficult for me. Seizures scared adults, never mind kids.
I took the phone from my mother and said hello. I heard a familiar voice and felt immediately at ease. Mister Rogers asked about my brain surgery, and I told him things I hadn’t told my parents. I told him I was scared, but I wanted the seizures to go away. I told him that I wanted the kids in my class to like me and to play with me. I asked him about King Friday, Lady Elaine Fairchilde, and Daniel Striped Tiger. We talked for nearly an hour. Before I hung up, I said, “I love you, Mister Rogers.”
We drove the seven hours to Johns Hopkins Children’s Hospital in Baltimore, listening to the many audio cassette tapes Mister Rogers sent to me a few days after his call. His soft voice discussed so many topics that concerned young children.
The day before surgery, I underwent medical tests to determine whether my body could survive the 12-hour surgery to remove my entire left hemisphere. I was confused and scared, but I knew that my doctors and parents would not do anything to hurt me.
In between the tests, I was able to spend time with my beloved brother, playing games and watching movies. I didn't realize it at the time, but my 10-year-old brother was worried that he might never see me again.
The very last thing I said to my parents as I was wheeled into the operating room was, “No more seizures.”
My 12-hour surgery was a success, but later that night, I fell into a deep coma. Amid the sounds of life-support machines beeping, IV fluids being pumped into my body, nurses and doctors running in and out of my room, and my parents softly sobbing, you could hear Mister Rogers singing I like you just the way you are from a cassette player on a back shelf in my room in the intensive care unit.
In the midst of this, my mother was called from the room to the nurses' station, where she was handed a phone. It was Mister Rogers asking how I was doing. My mom reported that although the surgery went well, I had sustained severe brain stem swelling and was in a coma. They talked a little more, and he told her that he would pray for me.
For the next two weeks, Mister Rogers called every day to ask about my status and to pray with my mother. One morning he called and asked her if it would be okay if he visited me the next afternoon. My mother told him I was still in a coma and would not know he was there. He said he would come anyway. He asked her not to tell anyone. He wanted it to be a private visit without any press.
The next afternoon, Mister Rogers arrived at the hospital with a clarinet case in hand. My family immediately recognized the tall man with the kind face as he stepped inside my room. Mister Rogers gently placed his clarinet case on my bed, opened it, and took out King Friday, Lady Elaine Fairchilde, and my favorite character, Daniel Striped Tiger. For the next hour, I was the star in his neighborhood.
I'd love to end this story by telling you that right then and there, I emerged from my coma. Sadly, I did not. After his visit with me and several more minutes with my family, Mister Rogers flew back to his hometown in Pennsylvania, taking along an empty clarinet case—leaving all three puppets with me.
What I can say is that when I emerged from my coma two weeks later, Mister Rogers and I became good friends. We remained close and shared many conversations, birthday wishes, and milestones for the next 20 years, until his death on February 27, 2003.
Watch Beth discuss her childhood and hemispherectomy below.
Beth Usher lives in Stamford, CT, where she is a humor professional certified by the Association for Applied and Therapeutic Humor (AATH). She is also a member of the board of directors of the AATH and a national keynote speaker. She travels the country speaking about how resilience, gratefulness, kindness, and humor can help people survive some of life’s most devastating challenges.
