meningitis — Blog — The Patient Advocate's Chronicle

In the 35 years since my first terrifying medical incident, a rare and often deadly disease, I have never met someone else who survived what I had. That’s unsurprising since it only affects only one or two children in every 100,000, and there is a 10-20% mortality rate. In fact, of the three children with bacterial streptococcal meningitis that year, I was the only one who survived.

But a couple of weeks ago, I was in the elevator of my apartment building (yes, I am the kind of person who starts conversations in elevators), and I found one! Oddly, we were talking about the switch from hard copy bulletin board to digital bulletin board in our garage elevator lobbies. Someone mentioned that it really helped the elderly residents who had vision problems, and I piped up that I appreciated it because of my steroid-induced cataracts. The other meningitis survivor asked why I was on steroids, and *boom* there we were, two meningitis survivors on one elevator.

I suspect she was about 10-15 years older than I, and she was 16 when she got sick which is a little more dangerous than six, but it also means that we had it within a couple of years of each other. Weird, right?

We got off the elevator and had some time to compare notes. We were both in a coma. Hers was longer, but my fever was higher. We had similar experiences coming out of our comas (too personal to share here), and we both had major, lasting side effects. She lost 10 years of memory, going from new driver to first grader in the space of her coma. She had to relearn everything she’d lost in those 10 years. I didn’t have 10 years to lose, but I lost some motor skills and the use of the left side of my body (temporarily) through paralysis.

That meant that both of us had to relearn how to go to the bathroom, how to write, how to feed ourselves. She recovered faster than I did, but it left is both with some . . . things. She still has muscle spasms and I have back issues from muscle atrophy and occasional shooting pains from the base of my skull into my left shoulder, occasional reminders that will never go away completely.

As we stood there in the lobby, it was weird to have so much in common. Have you ever had the feeling of being happy to see someone you had never met before? And that you very likely will never see again? I live in a building with over three thousand other people. In over 10 years, I had never seen this woman. I gave her my card, but if she hasn’t reached out in the last month, she probably won’t.

And that’s ok. When you have a rare condition, sometimes it’s enough to know there’s someone else out there just like there. However, instead of waiting to find support in random elevator conversations, you might want to find an actual support group, either online or in person. There’s nothing quite like finding the people who know your condition as well as you do. For all the ups and downs you weather every day, you will never have to explain it to them.

Someone asked me recently to write about what it felt like to be a child patient. I had over half a dozen starts, but I ended up scrapping the article because it was too heavy.

Maybe that was my excuse because I wasn’t ready to put that period of my life down in words for everyone, even me, to read. But that’s not fair. Keeping it to myself or glossing it over to sound more optimistic can’t change what was or what would be. So much of my self developed from that one event and the nearly two years of recovery that followed. I just spent a happy weekend with maybe half of the people on the planet who remember that time, and I am reminded that it can’t hurt me anymore. I won.

This is the third of three posts where I will share the things almost no one knows or remembers from the beginning of my healthcare journey, and how the monster that personifies my conditions came to be. (Read part 1 here and part 2 here.)

The Aftermath

Thirty-five years ago, I survived meningitis. Two years after that, I had managed to recover from the paralysis of my left side. But it doesn’t end there. There were ripples, long shadows that I am still dealing with. My memory is much better for this part, or rather, my understanding, but the ripples are complicated. They are physical and psychological, acute and chronic, affecting me and affecting others. Years of therapy have helped me understand the good (yes, the good), the bad, and the ugly.

The physical

The big stuff was behind me, but that wasn’t all there was.

I had brain damage. I still walked into walls since I had lost some depth perception and I had seizures. I couldn’t ride rollercoasters. They were afraid that would make it worse. The first two went away. The second might have, but I missed that childhood fearlessness window, so I never tried.
I had muscle atrophy in my entire left side, not something that can be fixed. It has caused a misalignment in the muscles in my back, which sends me to physical therapy occasionally, and may have contributed to a partially pinched nerve. My right side takes the brunt of any physical activity I do. I only discovered this when I was about 20. I went for new shoes, and the guy at the shoe store asked me if I knew my whole body sloped when I walked. Of course I didn’t. We tried to fix it with lifts, but it was so painful to shove those muscles back into alignment after that long, I gave up.
I have a strength difference in the sides. The left side is about 20% weaker than my right. I can feel it, but no one can tell unless they see me lifting weights. The left arm just quits sometimes.
I have had cataracts since I was 16, put there by the high doses of steroids I had to take during my illness and recovery. I should have surgery, but I don’t want to until I have to.
I have permanently stained teeth. All those teeth whitening commercials really rub it in, too. But stains that come from a high fever are too deep for easy, inexpensive fixes.

The psychological

I grew up too fast. After that I had no childhood. I had to know. Everything. My parents’ tenth anniversary was the summer I was seven, the same summer I started to walk again. They went to sailing school and left me and my brother with my grandparents. The only problem was that they had left the wrong instructions for my phenobarbital, a powerful drug that affects the nervous system. It is very addictive, a downer, and has a history of illegal abuse that lightened dramatically in the 70s and 80s, when it was replaced with a safer option, benzodiazepine. We had a huge fight and I ended up locking myself in my room until they got the sailing school to radio the ship my parents were on to verify I was right. The alternative would have been a 7-year-old overdosing on barbiturates for 10 days. Dosages are difficult to calibrate, so an increased dose for that long could have resulted in coma and death.
I hated having my picture taken. Hate might be too nice a word. Loathed. Abhored. Those might be better. I wanted no evidence of my time in a wheelchair. My shutterbug grandfather just wanted pictures of his granddaughter and I shut him down every time. Now I have no pictorial record of my triumph, which I regret. And I still hate having my picture taken.
The closest friend I had dropped me as a friend because I wasn’t in her grade anymore, so I developed a mistrust of people and an extreme need for privacy. It made me doubt my value. My closest friends are my closest friends because they stuck around – they proved themselves -not because I invited them in.
Boredom and apathy came often. School was easy, and what challenge could there possibly be after beating that one? I still struggle to find things that engage me for any amount of time.
Then there’s the rage, oh, the rage. I didn’t learn until much later that the meningitis would turn out to be the catalyst every diabetic goes through to trigger the onset of my Type I diabetes. Most diabetics get a cold or the flu as their catalyst. But no, it seems my body must do everything in spectacular fashion, good or bad. It took eight years for the diabetes to develop, but when it did, I was beyond the usual level of anger new patients feel. I had already paid my medical dues, survived more medical baggage than most people would in a lifetime. Problem was, there was no outlet, no fault. So, the fury just sat there, boiling for about six years, but still simmering. I am just now learning how to find a life without it.

Harm to my family

My parents never talked to me about it, but I am sure it strained their marriage. The worst was the unintentional neglect of my brother. He was two when I got sick, a time when he needed the majority of the attention from my parents. Instead they had to be focused on me. I still feel guilty. I know it wasn’t my fault, but it wasn’t his, either.

Now for the good

I am strong. I have no doubt. It’s something I’ve internalized, and can draw on when I need to steady myself. Nothing will ever be a crisis. 99% of likely life experiences aren’t going to be as bad as that one, so I can handle whatever you throw at me. Calmly and without drama.
Learning is easy. The only way I could look like everyone else during was to read, so I did. A lot. I was lucky to have parents who indulged me when I disappeared into the bathroom for hours, the only place I could be (fairly) sure I wouldn’t be bothered.
For the rest of the good, it’s hard to separate whether they’re from meningitis or diabetes or something else. There’s the risk aversion, the confidence in the value of the relationships I do have, and finding my worth outside of superficial concerns or other people’s opinions.

The bottom line is that being a child patient was a major foundational event for me, perhaps the foundational event. I have no idea who I would be without it, but I am fairly sure I wouldn’t like that person as much as I do this one.