My mom wrote down this story of my meningitis journey, which I’d like to share first. After her words, I’ll share a bit of my own reflection.
My mom’s reflection:
September 28th, 1986. At first, it seemed like any ordinary Sunday: rushing around in the morning getting myself and the two kids, Kristin, aged five and Andy, nine months, breakfasted and ready for church. As musicians at the church, it was always a long morning for our whole family.
When I picked Andy up from the nursery after the last service, I could tell he had a fever, so we came home, and I gave him Tylenol. It helped, but did not break the fever, and he was becoming a little fussy. I figured it was an ear infection, which I would call about the next day if symptoms continued. I called the doctor the next day, as the fever persisted and had an appointment for the afternoon.
As the day wore on, the fever spiked to 104° Fahrenheit. A friend stopped by and found me bathing Andy in the kitchen sink of cool water to try to bring the fever down. She drove me to the doctor, but our doctor was off that day, so we saw a new, young doctor who didn’t seem terribly concerned and sent us off with a prescription for amoxycillin. We started the medicine, but I was concerned because the fussiness was being replaced by lethargy, and the fever was becoming more and more stubborn.
I checked on him several times in the night, not realizing the seriousness of his illness. My husband was a teacher and went off to work on that Monday morning, but he was also concerned. By midday, he had secured a substitute teacher and arrived home just as I was discovering that Andy’s temperature was now 105° Fahrenheit.
I don’t even remember if we called the doctor before showing up in the office. Our doctor was in on this day and took one look at Andy and said, “I’ll meet you at the emergency room.” We were all there within minutes, and Andy was whisked away for a spinal tap. The diagnosis was soon apparent: homophiles influenza, a deadly form of spinal meningitis. Our doctor was not a particularly affectionate type, but he put his arm around my shoulder as he was telling me the diagnosis and explained that Andy was very ill, and that the next 36 hours were critical. He made me very aware that things could “go either way”.
The next time I saw my baby was in the paediatrics unit, hooked up to massive doses of antibiotics and other things that were hopefully to avoid seizures. It is sobering, of course, to hear a diagnosis, then to see your baby in a huge crib attached to all kinds of tubes, but most disconcerting was that he wasn’t crying. He was just limp with infection. He made it through that first night breathing and without a seizure, and we were all so grateful in the morning. This was the beginning of an almost two-week stay in the hospital with lots of medicine and huge relief after those first 36 hours had passed.
Thankfully, Andy made steady improvements, each one cheered on by the hospital staff. At some point in that stay, we were told that he might be deaf or at least suffer some hearing impairment from the massive doses of antibiotics that he received. That news really didn’t even register much with me at the time because I was so grateful that he seemed on his way to recovery.
We brought him home on Sunday, 12th October, so excited to have our family back together and getting back into our regular routines. Within a few hours, it became apparent that Andy had regressed in some areas of development. He had forgotten how to crawl and had to figure out how to pull up on the furniture, which was so routine for him before his illness.
Then, one day, a few weeks later, he was in the living room playing; I was in the kitchen. I could see him, but I called to him, and I could tell that he could hear his name, but he had no idea which direction the sound came from. This was the beginning of a new journey. There were many tests to determine the extent of his hearing loss - not an easy task on an almost one-year-old, but a pretty good reading was secured. As he got older, he could help with those assessments by following the instructions of the audiologist. He received training in lip reading and sign language beginning at the age of three and had also been fitted for a hearing aid by that time.
By the age of three, Andy was also showing great interest in music, wanting a “shiny trumpet” for his third birthday. He could sing, he played around on the piano, and soon I started to actually teach him, but I quietly wondered how his trumpet-playing aspirations would work out with a profound hearing loss.
As he did when he was nine months old (he turned ten months old in the hospital), he fought beyond that challenge to become a wonderful trumpet player, carrying him in leading roles throughout his grade school, middle school, high school and college years. He still plays, but in graduate school, he discovered not only a love for but an expertise in creating beautiful sounds with a choir. The next part of the story is his to tell, but I am pleased, proud, and mostly grateful that against the odds, he is making the world a more beautiful place as he teaches and shares great music.
My reflection:
I’m filled with gratitude for so many people, but especially for my mom for sharing this story. As a parent, I can’t imagine watching my child fight for their life. Since I was a baby, I don’t remember any of this myself, so I’m thankful she took the time to write it down so I could.
I stopped wearing my hearing aid sometime in the late 1990s, both because it didn’t really help (it only amplified a terribly distorted sound) and because I didn’t want the social stigma of being the “deaf kid.” For much of my life, I tried to hide the fact that what was supposed to be so perfect in me as a professional musician - my hearing -was profoundly flawed.
Thankfully, technology has improved drastically and so has my sense of self. In July 2024, I received BiCROS hearing aids, and now I’m hearing better than I probably ever have since 1986.
As I’ve grown older, I’ve realized that I don’t need to hide my disability. It is part of me, but it doesn’t define me. In fact, sharing my story has become freeing - and I hope it can be an encouragement to others. Today, I serve as Director of Choral Activities at Illinois State University - something that seems oddly contradictory to the daily challenges I face with hearing.
Meningitis Research Foundation is aiming to gather 2,030 stories of meningitis by the year 2030, and I’m grateful to contribute mine. On their social media page, they write, “Meningitis doesn’t just take lives - it changes them." That rings deeply true for me. Meningitis didn’t take my life, but its effects have shaped mine - and the lives of those I love - for nearly 40 years. I share my story to raise awareness for this disease, which continues to affect people worldwide, and to hopefully offer inspiration.
I can’t fully explain my healing, but I am deeply grateful to God for providing for me throughout my life. God often chooses the weak and unsuspecting, and that is the only way I can explain the life I’ve been so graciously given.