Nothing about meningitis is fair. In mere moments it can devastate lives and destroy families. It can take away dreams and shatter plans.
These factors make marking my 20th year since surviving bacterial meningitis significant to me.
I contracted bacterial meningitis on March 2, 2005. I was a young, vibrant 18-year-old former three-sport athlete enjoying her freshman year in college. It was my first day back to classes after having a surgery for a rare spinal disc herniation, but I was expected to fully recover.
That night after I’d retrieved some notes from a friend in the dorms, I was hit with the most excruciating headache I’d ever had. My parents didn’t live far so I asked to be taken back home. My parents worked in healthcare and were concerned but were told to keep an eye on me through the night.
In the morning, I was very ill with a severe headache, stiff neck, delirium and a high fever. My parents suspected meningitis and called 911. I was transported by ambulance to a nearby hospital where I was immediately given antibiotics, and a spinal tap was done. Those results were inconclusive, but my spinal fluid was very cloudy. I was then transferred to a larger hospital where a second spinal tap was done. Those tests later confirmed I’d contracted a rare form of staphylococcus bacterial meningitis.
The next few weeks were agonizing as I fought the infection. The pain felt like I was being burned from the inside out, I would wake up screaming only to pass out again from the pain. I had several procedures and was given a PICC line. I was delirious and continually in and out of consciousness. Due to other complications, I was unable to lift my head above 10 degrees off the bed for days and had to be fed, bathed and clothed by others.
One night I began to breathe very slow, and my parents were told to prepare themselves for the possibility that I might not make it through the night. They wanted to move me to the ICU and be placed on a ventilator. I remember hearing this and was too afraid to go to the ICU since my family couldn’t stay with me. I was afraid that I’d die alone. So, I stayed in my room, as they reminded me to breathe over and over again. Somehow, I made it through the night.
After almost three weeks in the hospital, I was discharged to home health care and continued to receive medications and therapies daily. I had to relearn how to walk, how to stand, balance and care for myself. My hair was severely damaged and had to be cut. It was during this time I promised myself that one day I’d do something to help others become aware of meningitis and avoid the devastation that it could bring. I pushed through my recovery so I could return to school as soon as possible, and after about six months I returned to summer classes at college.
By my senior year I had transferred schools and had to take more time off to have a major spinal fusion surgery. I graduated in 2009 with a bachelor’s degree in communications. I love art and creativity and knew I wanted to help others and began my career in the non-profit arts sector. After a few years I found myself working in healthcare marketing helping other patients share their stories. It was then I realized that it was time to share my story as well.
Overall, I’ve had several dozen surgeries and procedures since contracting meningitis. I have three spinal cord stimulators and use different mobility aids to help me live as independently a life as possible.
Meningitis continues to dominate every minute of my life even 20 years later. However, it’s given me purpose and a chance to make a real difference in the lives of others through my experiences.
My husband Joseph and our family have supported me through so much, from surgery recoveries to endless doctor’s appointments, Joseph is always by my side. Friends, fellow survivors and advocates have been tremendous in helping me become an advocate as well. Just knowing there is someone out there who understands what you’re going through makes such a difference.
That’s also what I would tell anyone newly diagnosed and recovering, that as isolated as you might feel right now, keep going. It does get better. You’ll have gone through some of the hardest things anyone could ever experience. In some ways, things will be harder, but you will find a new way, your way through. I’d also make sure they knew that there is a global network of survivors, families, advocates, and organizations working together to defeat meningitis.
My hopes for the future are that my meningitis story won’t be needed anymore, and that meningitis would be a thing of the past. Until then I will continue to work to help others protect themselves and prevent this disease from devastating any more lives and families. I am grateful for every day that I get to still be here as a mom, wife, and survivor.
Source: Katherine Thompson
Katie is 38 years old, a writer, wife and mother of 2.
