Meningitis in your words

John's story

  • Location: USA
  • Categories: Meningococcal
  • Outcome: Recovery with after effects
  • After effects: Sight problems
It was an ordinary day in the Spring semester of my sophomore year in college. While driving back from an intermural basketball game I felt the start of what I thought was a cold or minor sinus infection. I stopped at a drug store to get some OTC meds, then returned to my apartment. After making a quick dinner and visiting with my roommates, I still wasn’t feeling better. 

I had a poli sci test the next day. I hoped the medicine and a good night’s sleep would help. So, that’s what I did. I woke the next morning, vomiting profusely. My head was spinning like a top. I could not stand. The best I could do was crawl on my hands and knees. After what seemed like an eternity, I climbed back into bed. I wasn’t going anywhere. I called my parents. I told them I thought I had flu. 

After all, it was flu season and it really seemed logical at the time. Looking back, I have never felt that type of sickness. Before going back to sleep, I told both of my roommates to get as far away from me as possible because they did not want what I had.

Fast forward seven days and I woke up in the hospital. I had been in a coma. I attribute my survival to a miraculous visit by a friend who found me unconscious on the floor in my bedroom and called 911. I was rushed by ambulance to the hospital where they raced to make an accurate diagnosis to begin treatment. After eliminating several possibilities, a spinal tap revealed it was meningococcal disease, or meningitis. Treatment began immediately. 

I was quarantined in the ICU where the fight for my life began. It is because of the grace of God and the quick response of my friend and the healthcare workers at that hospital that I am able to share my story with you. Although rare, meningitis is deadly for 10-15% of people infected and can take the life of an otherwise healthy teen in as little as 24 hours. About 1 in 5 survivors live with permanent disabilities such as brain or kidney damage, hearing loss or limb amputations.

Coming out of the coma was not like I’d seen in movies. I was in and out of consciousness for the better part of a day before fully becoming aware. It is nearly impossible to describe the realization of what had just happened. As a typical teenager, I thought I was 10 feet tall and bullet proof. I had never heard of meningitis and back in 1998, there were no routinely recommended vaccines for it. 

I was confused and exhausted. I was irritated by tubes coming out of my arms and my nose, beeping and pulsing machines, a constant stream of doctors, nurses and therapists, coming and going, poking and prodding me. Most of all, I remember being disoriented by darkness. It was as though someone had turned off the lights and I couldn’t find the switch to turn them back on. I was comforted by the voices of my parents, who were at my side. 

I immediately became aware that my body was ravaged. My muscles had atrophied from laying in the hospital bed for a week. I was unable to perform simple functions like swallowing, sitting up and lifting my feet. Because of partial paralysis on the left side of my face, I couldn’t form a smile or open my eye lid. I remember telling my dad I couldn’t see anything and wondering out loud why my eye lids were not opening. He told me that my left eye lid was closed but my right eye lid was open and blinking normally. It was then that I realized that I had lost all of the sight in my right eye.

The first time I heard the word meningitis was when I was being transferred from ICU to the recovery section of the hospital and they told me I survived meningitis. With the support of my family and friends, I was determined to get out of the hospital and back to a normal life. 

Over the next two weeks we worked with cognitive, physical and occupational therapists to the point of exhaustion to relearn basic functions like sitting up, talking and swallowing without aspirating so we could remove the feeding tube. By the end of my three-week hospital stay I was cleared to be discharged. Although in a wheelchair, I felt blessed to be leaving the hospital alive. My mother and I boarded a plane for the one-hour flight back home.

That’s when reality set in. Life after meningitis was going to be very different than life before, but I was lucky to have a support network of family and friends to help guide and encourage me. I love my parents and have a great relationship with them, but being home was not where I wanted to be. I was determined to get back to my independent college life by the beginning of the fall semester. 

That gave me about five months to rehabilitate my body and learn how to interact with the world with my new visual impairment and neurological challenges. I got to work with orientation and mobility training, physical and occupational therapy, weight training and technology training. With my new sight limitations, I had to learn how to use a computer without being able to see the screen. After hundreds and hundreds of hours of work, I reached my goal of returning to campus and reestablishing the 200-mile buffer zone from my parents.

It was time to move on with life and figure things out on my own. While this was exciting, it was terrifying. Fear and anxiety hit me like a ton of bricks during the first class of my first day. For some reason, this newly blind guy selected English literature as a way to ease back into college. 

As the professor reviewed the lengthy list of required reading, all I could think about is how am I going to do this? I’m happy to report that with much trial and error, I did figure things out. As it turned out, I was on the five-year graduation plan but am very proud of my accomplishments and the life lessons I learned during those college years.

I’ve had a lot of wonderful things in my life, like meeting my wife and starting a family. As someone who beat the odds and survived meningitis, I feel compelled to use my story to educate others about this rare disease. In addition to being an advocate for the National Meningitis Association, I host a podcast called Ambiguously Blind where we discuss my story, talk with meningitis survivors and others who have faced adversity, overcome life’s challenges and people thriving with vision loss

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