Survivor Stories

One summer I was home from college and I had a near-death experience. I was eighteen and had bacterial spinal meningitis. I almost died. 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.”

 

And so 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. 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. 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, the next thing that 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. I looked down and I couldn’t move my leg because I was out of my body. I was floating up out of my body. I could see myself down on the hospital bed. The doctors were looking down on my body and I was floating through this black space. 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. All I knew was that I saw a bright, white light.

 

I saw my grandfather at the end of it. He was standing there with his arms outstretched. I wanted to go to him because he had died when I was five, and he was like a father to me. It was a big loss when he’d died. I wanted to go to him. I wasn’t afraid. I wanted to be with my grandfather who had died when I was five. 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. Back, back, back, back

 

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In June 1980, when I was 18 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. They thought she only had the flu. That’s how it started for me as well. I had flu-like symptoms one night, then a slight fever, headache and vomiting the next day. I went into a coma later that day and had a near-death experience while in the coma.

 

One of the recognizable signs of meningitis is a reddish or purplish rash along with the flu-like symptoms. My mother noticed a rash on my leg when I first complained of feeling ill, but we didn’t know at that time what it was from or if it was connected to my other symptoms. I stayed in bed all day while feeling progressively worse, not realizing how seriously ill I was becoming.

 

My mother had to leave the house to get her car since it was being repaired. During the time my mother was gone, my symptoms became more severe and I began to panic because I was alone. My head and neck hurt more than I’d ever experienced, and I couldn’t stop throwing up. I was terrified because I didn’t know what was wrong. Whenever I tried to move, I kept throwing up or having dry heaves. Later I found out the meninges – the lining that protects the brain and spinal cord – was very inflamed and my sense of balance was thrown off due to the inflammation.

 

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. At some point, I complained to my mother and she joked by saying something like, “Don’t be a baby.” I was in such severe pain that I remember hitting my head against the wall to make the pain stop! I have no idea why I thought that would help. To be fair to my mother, she says she didn’t realize how ill I was until after she returned home with her car and saw me pulling the hair on my head as hard as I could to stop the pain. She was shocked that my condition had gotten so much worse in such a short amount of time and became scared. She took my temperature and I had a very high fever, around 105 degrees. She called our family doctor, Dr. Morton Shapiro, and then rushed me to his office. We got there about 30 minutes before the office closed. Luckily my mother had returned with her car in time to drive me there and to the hospital. Otherwise we would have lost precious time, and I might have died before getting examined by my doctor.

 

I was fortunate enough that my doctor recognized the symptoms of meningitis and rushed me to the hospital for a spinal tap. He noticed that it hurt me to look into the light or move my neck – these are classic symptoms of meningitis. My doctoru told my mother I needed to be rushed to the hospital in either an ambulance or her car. She chose her car, in order to get me to the hospital more quickly, and she drove to Holy Cross Hospital while I lay in the back seat. Even though my doctor caught the meningitis in time, I was too sick and soon after went into a coma. I went into a stupor in the car and then became comatose before getting the spinal tap. It upset me for a really long time that I couldn’t remember getting the spinal tap. I thought to myself – how in the world could I have gotten a spinal tap without remembering it? I just couldn’t accept that I was already unconscious at that point. I lost all bodily functions.

 

While in the intensive care unit, I had a near-dear experience. I came out of the coma the following day. The first thing I remember while in the coma is hovering over my hospital bed, hearing the doctors and nurses. I was out of my body. I could hear and see them trying to get a reflex from my legs, using one of those tools they tap against your knee. Since I was out of my body, I couldn’t feel or move my legs. I then heard them shout, “Move your legs Sharon! Listen to our voice. Move your legs or you’ll be paralyzed!” I was so terrified because I couldn’t do it. And then their voices receded into the background.

 

The next thing I remember is floating down an expansive, amorphous black space for a very long time. I had no sense of time. I felt very peaceful and unafraid. After what seemed like only minutes, although in reality I was in the coma for almost 24 hours, I saw my grandfather (my mother’s father) who had died when I was five. I had been very close to him, so it was a great loss when he died. He stretched his arms out to me and I floated towards him. I felt no fear or pain. I wanted to be with him. But something – I’m not sure what – made me realize I had to go back to the hospital room.

 

The next thing I remember is coming out of the coma and seeing my father sitting by my bed with a Popsicle. He said my mother was sleeping. She’d been up all night at the hospital and had to go home in the morning to be with my younger brother and sister. My mother later told me my doctor wasn’t sure if I would make it through the night. When it was clear that I was not going to die, I was moved from the intensive care unit to a regular room. My roommate had a brain tumor and one morning she woke up screaming that she couldn’t see. The nurses were concerned that I was too young to be in a room with an adult patient near death, especially given my own near-death experience, but since I was 18 I had to be in an adult ward.

 

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.

 

Bacterial meningitis causes many unnecessary deaths, amputations and disabilities. 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. If we learn to be more aware of our bodies and to get help quickly when we realize something is wrong, we can alleviate much suffering. What makes meningitis so insidious is that even though many people are carriers, not many actually get ill. It takes not only transmission of saliva but also the right breeding grounds. One of the reasons meningitis is more common among college students is because many live in crowded dorms with shared bathrooms, are under stress or stay out late at night, all of which contribute to lowered immune systems. Studies have shown that freshmen living in dorms are at higher risk than other college students because they haven’t developed immunity to the wide variety of bacteria found in such crowded living conditions.[1]

 

Beginning in the 1990s, many states passed legislation requiring incoming college students to show proof of vaccination against bacterial meningitis. The fatality rate is usually around 10-15% for cases in which antibiotics are administered and 50% for untreated cases. The disease is not common, striking about 1 person in 100,000 in the U.S each year, and the rate among freshmen in dormitories is 5.1 per 100,000.[2] According to a 2002 article by Anita Manning, the Center for Disease Control recommended that college students be given information about the disease and the vaccine. Some states then required college students to get the vaccination. Manning explained: “After the deaths of several college students in Maryland, the state enacted legislation in May 2000 requiring vaccination, the first state to address the issue by law.”[3] The vaccine was first developed in the late 1970s and not required or widely available when I was in college. Looking back, there could be any number of ways I contracted the infection, although most likely it was from sipping a friend’s soda at a nightclub and from being in the high-risk freshman category. Studies found “295 cases of meningococcal infection in Maryland from 1990 through 1999. Of those 295 cases, 71 (24.1 percent) occurred among people ages 15 to 24, and an unusually high number of these cases -- 16 cases, or 22.5 percent -- were fatal.”[4]

 

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. The trauma of facing one’s own mortality at such a young age is profound. On the positive side, I’ve gained a perspective on life and death that sees the bigger picture. Life and death are one continuum. I’m not afraid of dying, because I know how peaceful the process will be. I accept that I may have little control over how, when or where I die. Most importantly, I now have a greater appreciation for each day I’m alive. I cherish every moment and try to live life to its fullest. I know that life is precious because it may end at any second.

 

The meaning of life is to live it. The meaning of life is to live. The meaning of life is to live it. The meaning of life is to live. To live, to live, to live.

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[1] Laurie Tarkin. “Rare but Deadly Ailment Catches College Freshmen Unprepared.” New York Times (February 11, 2003).

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