Meningitis in your words

Tiffany Humphrey's story

  • Location: USA
  • Categories: Bacterial meningitis
  • Age: Adult 25-59
  • Outcome: Recovery with after effects
  • After effects: Learning difficulties, Memory loss
TiffanyHumphrey
My father drove me to an ER in Georgia when I was 8 weeks old. My body was limp, and I was pale. After the doctor examined me, my father was told to take me home and let me rest, he told my father that I just had pneumonia. 

As my father carried me out to the car, my body still limp, something kept nagging him not to leave the hospital. He turned around, walked back in and demanded to see a different doctor.

A doctor who had just arrived from Buffalo, NY (ironically my father's hometown) earlier that week came into the room, and after a slew of tests, figured out that I had bacterial meningitis. It was about that time that my head began to swell with fluid, and so the doctor's needed to work fast. 

The only physical scar I have from that is a tiny white scar on my ankle where they inserted an IV.

After recovering from bacterial meningitis, I went back to normal life as an Army brat. I had already lived in Virginia and Georgia, and then at the age of 3, we moved to Germany. We remained in Germany for 3 years. I have not a single memory of this time. 

At the age of 6, we moved back to the states, and I again moved around a few times. Because of the moves, I never had one doctor following up each year to make sure I wasn't having any adverse effects of the meningitis. 

My first memories start around at around the age of 10, and they are few and far between. 

I began having learning difficulties in middle school, but I quickly adapted to my long-term memory loss after learning a trick in school one day. We were taught the acronym for North, East, South, West as "Never Eat Shredded Wheat". I used that method all throughout middle school, high school, and college. In college, I would make up long 20-word Acronym sentences, because my brain just couldn't seem to hold on to the actual information I was being taught. 

For learning the scientific (Latin) names of animals, it would look something like this-

Latin name - Acanthaster planci
Common name - Crown-of-thorns starfish
Abbreviation - COTS
So, I would write down "Cots Are Plush" - Then on the test I would write that down and then disassemble my code....cots (crown of thorn starfish) are (acanthaster) plush (planci). For some reason, I could remember what the A and P stood for, but my brain just wasn't able to connect the latin words to the common name, because it never made sense to me. There was no real connection between the words, so I needed a trick to connect them. And if I saw the words "acanthaster" and "planci" enough times during the week or weeks that I studied, then somehow, I would be able to attach them to the A and P in my acronym.

Everyone else just did flash cards, one side was the Latin name and the other was the common name, and that's all they needed. I needed that extra step to connect the two, because it didn't make sense to my brain why those words would all be connected - Acanthaster planci crown of thornes starfish

I graduated college with a BS in Biology, yet I couldn't tell you what the Krebs Cycle is. I can show you what it looks like, and you can imagine what I had to do to memorize the circle in clockwise fashion using a long acronym for all of those words. (see attached photo)

I struggled with long form math questions on standardized tests; however, I excelled at English and creative writing.

Since middle school, the minute I would get home from school, I would shut myself in a completely silent room and do my homework before the lessons of the day escaped my brain. I never procrastinated on a project because I knew I would forget, so I did my homework and projects as soon as possible after they were announced to us. I cannot study or read if there is any music still to this day. It must be completely silent. This also affects me in other ways, such as at the movie theater, if people are talking or crinkling paper, I cannot focus on the movie.

I studied three times longer than my peers leading up to a test. I was able to get straight A's all throughout the year, but then when it came time for the final exam, I would bomb it because it was as if I was seeing the information from the beginning of the school year for the first time. And there just wasn't enough time to learn 9 months of material in one month. Luckily, my grades throughout the school year were so high, that even after doing bad on the final, I would end up with an A.  Because of this, neither my teachers nor parents knew I was struggling. I never told anyone.

I graduated from high school on the Honor Society, retaining not a single fact that I had learned. To this day, if I am asked about a president or war, any sort of common knowledge historical fact, I simply cannot recall the answer. Because of this, I have struggled with self-esteem. I feel "dumb". I steer clear from conversations if I think I will look stupid by not being able to keep up. 

I know the term "The Civil War", but I cannot recall everything I was taught about that time period or what the dates were. I can't recall who our allies were in each war. I cannot remember names of presidents that I've had in my own lifetime.

It makes you very insecure and nervous to meet new people. I am an extreme introvert, and I wonder if that is the reason why. I feel comfortable and safe around a few people, and I don't like to venture outside of that bubble for fear of people thinking I'm just a dumb American who knows nothing about politics or history. 

I have read or heard all of the information, yes, but I cannot retain it or recall it later on. I've watched countless documentaries and read articles on Hamas and Hezbollah, yet if you asked me what they are right now, I'd have nothing to say. My mind is simply blank.

I cannot pull up images of my own children when they were babies in my mind, I have to look at photo albums. 

I am really good at procedures that are done in repetition. I learn best being hands-on as opposed to reading it in a book. I performed necropsies on whales and dolphins for 5 years and became quite good at my job. However, one year later after not doing that job anymore, I cannot recall anything. It's as if I never did a single necropsy. All the terms I learned are completely gone. 

My memory is so bad that if I read something that I wrote in the past, I have no recollection of writing it, and it seems foreign when I read it, I don't even recognize that it's my voice.

In high school, I was first-chair clarinet, yet I cannot read music. No one ever knew this. I was able to look at a note on the sheet and simply knew where my fingers needed to go, but I didn't know if it was an A or a G. 

I often feel like an imposter because of these setbacks. I have a fear of speaking in front of crowds, only because I'm afraid that I won't be able to retain the information. 

I struggle to find common words, and it's only getting worse as I get older.

I have a 5-month-old puppy, and I cannot even remember what she looked like 2 months ago. 

I do fear that I may end up with dementia, since I've basically had a form of it my whole life. I hope that I will be able to work for the next 20 years without struggling too much.

The one thing I want people to know is that you cannot tell by looking at someone who might have had bacterial meningitis. My physical appearance was not affected in any way. The problem with this though is that I am seen as rude at times if I cannot recall someone's name, or I forget their birthday.
 

Have compassion and empathy, as we never know when someone is silently struggling. And if you are the one silently struggling - TELL SOMEONE. A teacher, a parent, a doctor, an aunt, anyone. Ask for help! I wish I had.

Tiffany Humphrey
November 2024

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