Friday, December 14, 2018

Hemispherectomy, Mr Rogers and Dr. Ben Carson

I had up to 100 seizures a day as a 5-year-old child. Often during a seizure, I would fall and bang my head on the floor or whatever presented itself in my descent. The only way for my mom to shower and dress for work without worrying was to prop me up with soft pillows and place me in front of the TV with my 7-year-old brother, Brian, beside me. She turned on the TV show, “Mister Rogers’ Neighborhood,” and I did not have a single seizure during the show’s duration. Something in his voice calmed the electrical circuits in my injured brain and allowed my body some rest.

My mother, brother and I performed this ritual every work day for two years with great success. I began to consider Mister Rogers my real friend and not just my TV friend. I talked back to the TV screen. I would say yes, I will be your good neighbor. So it was no surprise that my mother would call Mister Rogers’ TV station in Pittsburgh in preparation for my upcoming brain surgery. My neurologist had determined that somehow I contracted a rare brain disease called Rasmussen’s encephalitis. He thought that a slow-growing virus was killing brain cells in the left side of my brain causing epileptic seizures. The only cure was an operation called a hemispherectomy — the removal of one half of my brain.

My mother told Mister Rogers’ assistant that his show was a sanctuary for me and that I believed he was speaking directly to me when he sang his song “Won’t You Be My Neighbor.” She explained about my seizures and my upcoming surgery and the fact that the seizures did not happen when I watched his show. My mother thought Mister Rogers’ assistant might send an autographed photo of my TV friend or even a note from him assuring me that I was going to be OK.

One week before my surgery, the telephone rang. My mother spoke to the caller for a few minutes and then told me a friend wanted to talk with me. I was excited that someone calling themselves a friend was calling me. Friendships were difficult. 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 me about my brain surgery and I told him things that I did not even tell my parents. I told him that I was scared but wanted the seizures to go away. I told him that I wanted the kids in my class to like me and want to play with me. I told him that I was afraid that I might die and leave my brother. Mister Rogers’ Neighborhood characters, King Friday, Lady Elaine Fairchild and my favorite, Daniel Striped Tiger, assured me that the doctors and my family would take good care of me. We talked for over an hour. Before I hung up the phone, I said, “I love you, Mister Rogers.” He told me that he loved me, too.

We drove the seven hours to Johns Hopkins Hospital in Baltimore, Maryland listening to the many cassette tapes sent to me by Mister Rogers shortly after our call. His soft voice discussed so many topics that concerned young children. My favorite cassette was the one where he sang – “I Like You Just the Way You Are.”  The day before surgery, I endured back-to-back medical tests to determine if my body was strong enough for a 12-hour operation to remove my entire left hemisphere. I just wanted the seizures to stop and would go along with anything that stopped them. In between the tests, I was able to spend time with my beloved brother. We played games and watched movies. I didn’t realize it at the time, but my brother was worried that he may never see me again. He was only 10 years old. I was grateful that my surgeon, Dr. Ben Carson (yes, the former presidential candidate) recognized that he was scared and took him to the hospital chapel where they prayed together.

The very last thing I said to my parents as I was wheeled into the operating room was, “No more seizures.”

Dr. Carson told my parents that the surgery went well and they could see me as soon as I was placed into the recovery room. I lay swollen with tubes and wires in my head and body. My parents had faith in God and in my doctors, but this scared them beyond words. Later that night, for reasons that have never been explained, I fell into a deep coma.

With the sounds of life support machines, IV fluids flowing 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 Love You Just the Way You Are,” from a cassette player on a back shelf in the intensive care unit. My mother was called from the room to the nurses’ station where she was handed a phone – she was told a man claiming to be Mister Rogers was asking for her. It was Mister Rogers asking her how I was doing. Mom gave him the bleak news that although the surgery went well, it appeared that I suffered severe brain stem swelling and was in a coma. They talked a little more and he told her that he would pray for me. We did not know that Mister Rogers was an ordained Presbyterian minister.

For the following two weeks, he called every day to inquire about my status and to pray with my mother. One morning, he called and ask if it would be OK if he visited with me the next afternoon. My mother told him that sadly I was still in a coma and would not know that he was there. He said he would come anyway. He asked that she not tell anyone that he was coming because he wanted it to be a private visit. The next afternoon Mister Rogers flew from Pittsburgh to Baltimore with only a clarinet case in hand. His friend from Baltimore met him at the airport and drove him directly to the hospital. My parents, brother, grandparents and many other family members took turns keeping vigil by my bedside. Each tried in their own way to wake me from my coma. They 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 and took out King Friday, Lady Elaine Fairchild and my favorite, Daniel Striped Tiger. For the following 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 but no, this was not to be. After his visit with me and several more minutes with my family, Mister Rogers’ friend drove him back to the airport and he flew back to his hometown in Pennsylvania, taking along an empty clarinet case. I woke from my coma several weeks later and was excited to be surrounded by the neighborhood puppets he left for me.

For the next several years, Mister Rogers called me often and sent me many letters and books. In 1991, my mother was on the commencement committee for the University of Connecticut. The committee was searching for a commencement speaker and I suggested they ask Mister Rogers. He accepted the invitation and requested that I help him with his speech. I wrote that he should tell the students that they should be kind and do good things for others. I was 11 years old at the time and Mister Rogers quoted me word for word in his commencement address.

I can’t begin to describe how excited I was as my father, brother and I waited for Mister Rogers’ plane to arrive at the airport. We were to be his hosts for the entire commencement weekend. I was going to meet my lifelong hero while awake! He was just as I imagined he would be. His voice was so kind and gentle and we gave each other a huge hug. I could not help but cry with sheer happiness and hero worship. We did not stop talking the entire trip back from the airport. He told me that he was very proud of me and that he was excited about how hard I was working in school. He knew that the swelling on my brain which caused my two-month coma left me paralyzed on my right side. I had to relearn how to walk, talk and read again.

I looked forward to his phone calls and his encouraging words of support. What helped me most as I grew older and stronger were his words to me, “I like you just the way you are.” Mister Rogers also wrote to my brother, Brian, as he served in Americorps. When Brian became a member of the FDNY, he told him that he was proud of him and called him a true helper.

Mister Rogers passed away on February 27, 2003. I could not get out of bed. I had lost a close real life friend and not just a TV friend. He meant the world to me. I was sad for him and sad for his wife, Joanne. Sad for his sons and grandsons. Sad for me and sad for the thousands of children who would not get to know him as I had. Obviously, I wish that I did not contract a rare brain disease. However, I am grateful that someone like Mister Rogers came into my life and helped me heal. Whenever I am in a scary or confusing situation, I remember his words, “Look for the helpers. There are always people who are helping.”

Thank you for helping me, Mister Rogers! I miss you!

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