By Jonathan Anthony Burkett
For almost nine years, my body kept sending me warnings I could not control. Dizzy spells, headaches and seizures dropped me on a sidewalk, in a school hallway and at work. This is that story from my memoir Neglected But Undefeated, told plainly, along with the people who helped carry me to the operating room.
The first seizure
The dizziness started when I was a little boy in South Florida. During one beating at home, my head was slammed into a wall, and that was the first time I felt the spinning that would keep coming back. For a long time I told no one.
On March 17, 1997, the day after another beating, I was stumbling at school. Staff brought me to the office, and I ended up on the floor covering my eyes because the room seemed to tilt. The following Monday, walking to school, I had a seizure and collapsed on the sidewalk in front of a woman's house. She called an ambulance, and I woke up in the hospital.
I was ten years old. Doctors asked what could be stressing such a young child. My memoir recalls that clinicians initially discussed stress in connection with my seizures and dizzy spells, and they put me on anti-anxiety and antidepression medication. But the seizures were not finished with me.
Sixteen seizures and “something growing”
In March 2003, in tenth grade, I went to school with a huge headache, slept through class and blacked out in the hallway. I woke up two days later in a hospital bed. They told me I had had sixteen seizures since I was admitted. The doctor called it a near-death experience.
No one was sitting by my bed. When they asked for a parent's phone number, I said I didn't have one. Then an MRI and a neurologist found what had been hiding behind all those years of dizziness. The doctor told me, “you have something growing in your brain.”
Those conversations are part of my recollection of that period; they do not establish the medical cause of seizures or imply that expressing feelings treats a neurological condition. Later they told my mother I needed surgery for a tumor on the left side of my brain. She refused to give her consent, and the operation did not happen then.
Living with seizures and no home
The next few years were the hardest of my life. I was sleeping on the streets, at bus stops and on friends' couches, and the seizures kept coming. I had them at school, in the street and later at work. More than once I ran out of a hospital after a seizure, because they would not release me without a guardian's signature.
In February 2005, after the seizures started happening at work, I was kept in the hospital for four months. Doctors said I needed surgery, and that life on the street was not helping me survive long enough to get it. My seizures were still uncontrollable.
During that long stay I became calmer. I smiled every day, and the nurses kept asking me why.
What the hospital notes said
Afterward, a doctor looked up my past hospital reports and shared them with me. In October 2005 I had a seizure in the cafeteria at Broward Community College. The notes from that stay describe me as a “pleasant 18 year old” with a seizure disorder who was not a student but wanted to be one.
They recorded that my CT scans that spring had all been abnormal. They listed me as homeless, and noted that I did not smoke or drink and was planning to get my GED. One note described a lesion in the left temporal area of my brain, likely linked to my seizures, and recommended surgery. Another said earlier follow-ups had been missed “because of financial and social issues.”
Those lines show how easily a young man can fall through the cracks: no money, no stable address and no parent at his side.
The godmother who found a surgeon
Then there was Marise. Marise Christophe was a worker at Memorial Hospital and my caseworker, and in my book I name her my godmother and one of my three VIPs, along with my grandparents. She “treated me like a son,” and I knew she cared about my well-being.
Before I left the hospital, I called her, thanked her for all her help and told her about the plans for my surgery. She ended up coordinating with a surgeon who would not charge me for his services. I promised myself that one day I would buy her a Mother's Day gift, because of her efforts to mother me.
After that I moved in with a friend who had his own place, and I began having faith in my future. On January 30, 2006, two days before my nineteenth birthday, I had a craniotomy at Memorial Regional Hospital for the left temporal abnormality described in the hospital notes reproduced in my memoir. I tell the story of waking up afterward in another post.
If you are carrying something no one can see
I share this for anyone whose health keeps getting pushed aside because of money, housing or family trouble. I am not a doctor. If you are having seizures, blackouts, constant dizziness or bad headaches, please see a doctor.
And if you know someone in that situation, you could be their Marise. One phone call, one person willing to coordinate the next step, can change a life. If a child is in immediate danger, call 911. In the U.S., the Childhelp National Child Abuse Hotline is 1-800-422-4453.
“If I couldn’t get up, God had someone else come into my life to hold my hand and help me back up.”
— Jonathan Anthony Burkett, Neglected But Undefeated
The full story is in my memoir on my Books page.
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