This is my story about my near death experience from bacterial meningitis.
In June 1980, when I was 18 years old and home for the summer after completing my freshman year at University of Maryland, I almost died from meningococcal meningitis, the bacterial form of spinal meningitis. Luckily I came home that summer instead of staying in my dorm. Another student at the college contracted bacterial meningitis that same summer and died; she had stayed in her dorm, gotten treated at the school health center and died soon after.
I came down with what seemed like the flu and I had a rash on my leg. I said to my mother, “I’m not feeling well, I think there’s something wrong with me.” I said to my mom, “I think there’s something wrong with my body; I think there’s something wrong with my body.” She said, “No, there’s nothing wrong, there’s nothing wrong. Just go to bed and you’ll be fine.” I went to bed and I didn’t feel any better. In fact I felt a lot worse. I said to my mother, “I’m really not feeling that well, I’m throwing up and my head hurts. I think there’s something wrong.” She said, “No, you’re fine and I have to leave now to pick up the car which is being repaired.” I said, “I’m really sick and there’s something wrong.” My head hurt so much and I was in so much pain that I started banging my head against the wall. When you’re in pain, you don’t realize that some things will actually make you feel worse. I was banging my head against the wall hoping my mom would come back with her car. Half an hour went by. An hour went by. I thought, “I’m so sick.” I couldn’t even move, because when you have spinal meningitis, the lining around your brain becomes infected. The membrane becomes swollen and almost touches your skull. Finally my mother came home and she realized something was wrong, because she took my temperature and I had a 105 degree fever. She said, “Oh my God, we’ve got to call the doctor. Oh my God, we’ve got to call the doctor. We’ve got to go to the hospital.
Luckily my doctor knew what was wrong. When I got to his office, my eyes were sensitive to the light; I could barely move my neck. The pressure against my skull was unbearable. It was the most excruciating physical pain I’ve ever felt in my life. Now, almost thirty years later, I cry thinking about this pain. He said to my mother, “We’d better rush her to the hospital right now to give her a spinal tap.” I went into a coma on the way to the hospital and had a near death experience while in the coma. The last thing I remember is moaning on the back seat of my mother’s car as I lay down. Every time I tried to move, I would throw up because my balance was off. The infection affected my balance.
The next thing I remember was moving down a black space. It was a wide black space. There was nothing in back of me. There was nothing around me. I wasn’t scared anymore. It was all very peaceful and calm. Then I heard a doctor say, “Move your legs Sharon! Move your legs or you’re going to be paralyzed! Move your legs!” I couldn’t move my legs because I was actually out of my body and looking down upon my body. I saw the doctors with one of those reflex instruments they use to get you to move your leg. Then I saw a bright light. A bright, white light. I read later that it’s common to see a bright, white light when you’re about to die. But at that time, I didn’t know it. I wasn’t afraid but something inside told me, I don’t know what it was, something intuitively told me, it wasn’t my time to go. So I started floating back down. My mother later told me my doctor wasn’t sure if I would make it through the night.
I was pumped up with an antibiotic in order to treat the infection. The intravenous drip had to be administered through a needle in my hand, which was very painful because the nurses had to change my IV every two hours, including when I was sleeping. At night, I would wake up when my IV was changed and could smell the the antibiotic coming out of the pores of my skin and from my hair. My head still hurt and I was still throwing up, but I wasn’t in as much pain. A tube was put down my nose and throat at one point, in order to get out a lot of the blood I was coughing up during dry heaves. The rest of my family had to take another antibiotic so they wouldn’t get meningitis from me. I was very sick for almost two weeks.
After I was released from Holy Cross, I recuperated at home and tried to resume college. Unfortunately there are many after-effects of meningitis, both physical and emotional. I had short term memory deficits, concentration problems, depression, moodiness, spatial orientation difficulties and learning disabilities due to some brain damage, and these were exacerbated by other personal problems I was experiencing at home and at school. It got so bad that I had to take a year off school. At that time, there wasn’t a lot of awareness about meningitis and I didn’t understand all the changes I was going through. I thought of the girl at my school that had died; I thought it should have been me and not her and for about five years after my recovery I wasn’t sure if I wanted to live or not. I experienced a lot of survivor’s guilt. For a long time I thought I must have lived for a reason and channeled all my energy into finding that reason, through the means of creative, spiritual and intellectual pursuits. Now I accept that I’m alive simply because I was lucky enough to get help quickly.
I feel fortunate to have lived and to have kept my legs. I sometimes get weak and dizzy, but I have full use of my body. In working through the trauma of my near death experience, I became stronger in mind and body. I tried hard to finish college by working and attending school part time, but I ended up leaving in my senior year. In 2000, I finally finished my B.A. at Mills College after receiving neurological testing and treatment at Kaiser Permanente Medical Center in San Francisco. I was told my frontal lobe had experienced some damage but not enough to severely limit me. By overcompensating in other ways, my functioning resumed to almost what it had been before my illness. After I got out of the hospital I had some of my most creatively fertile and productive years as a musician, artist and writer. I still mix up left and right sometimes, still have moments when my hearing drops out, still have moments when I can’t remember something I’ve recently said or done (I’ve learned to write everything down), and still have moments when the correct word won’t come to mind. Yet I’ve succeeded despite these challenges. Our minds and resilience are more powerful than we often realize. I feel grateful for my doctor’s care and skill. And I’m grateful that those who cared for me at Holy Cross Hospital were able to save my life. With meningitis, every minute counts.