Clarity: Here & There but not Everywhere

Recovery, Redistribution & Rediscovery

When I was diagnosed with meningitis on 12.4.23, I never ever could’ve imagined that it would not only spend months being the literal keyword in our household and completely monopolizing my life, but that parts of it would say with me far longer than anyone might be able to see. 

It’s been nine months now, three quarters of a year from that day, and earlier this week I noticed in a crevice of my brain that either hasn’t come back online yet, or that it never returned to it’s full capacity. [Sidenote: No, I am not okay. Yes, this makes me furious, angry, frustrated, disappointed and sad, dragging up to the surface a very specific type of grief, and it’s expectation that I will pay homage to it right at this very moment.]

You see, I used to define myself by my intelligence. I worked hard, really hard, but I was also privileged in being a few steps ahead of everyone else. I never thought of myself as the popular girl, the pretty girl, the skinny girl, the flirty girl, the nerdy girl or any other of the superlatives that were so pivotal to our school year identities, but I did think of myself as a smart girl.

My brain has done a lot for me - and I refuse to dismiss that thought given how fiercely angry and disconnected I feel about it, about the body I live in. I didn’t get my first academic B until I went to college and then on to graduate school, of which from both I graduated both magna cum laud with a 3.83 GPA. Do most people remember their GPA’s from when they were 22 or 26 or even 30? No. But I do. Because it proved something to me. It proved that I cared. That even though I didn’t align with all of those other groups of individuals, I truly did my absolute best to succeed at learning and retaining knowledge that would set me forth in the world to do good [Not just well, but good. - Mr. Feeny, Boy Meets World]

Since December, I have lost a lot of that advantage. The first few months were the worst - I couldn’t remember a single thing, no new information processed, I wasn’t easily able to recall words or express myself, I spent most of that time bed-bound attached to an IV pole, but I didn’t find myself suffering from ‘bed rot’ - it was the ‘brain rot’ that really caused me so much distress.

In the spring, I went through an 8 hour neuropsychological evaluation to identify lingering holes or gaps in my cognitive abilities, and while nothing significantly concerning arose, I was reminded over and over again that it can take up to two years to recover from bacterial meningitis - and that’s for the lucky ones. Some never fully recover at all.

Here we are now, several months past that, working full time, resuming my status as a chronic illness patient, struggling with my mental health, trying to spend quality time with my daughter, and again, earlier this week I was reminded while experiencing decision paralysis (the inability to make a decision, no matter how consequential or inconsequential it may be) that it likely wasn’t just because of the depression treatment I’m going through, or the ADHD I was finally diagnosed with a few weeks back - but likely a lapse in memory due to one of those meningitis related pockets in my brain. One still not fully online yet. One of how many that still have not fully recovered.

In retrospect, now that this trauma has come back up to the surface, I’ve noticed that I’m still struggling at times with my short term memory - it’s considerably shorter. My long term memory - it often comes up empty or needs extra time for what it went in searching for in the first place. Sequencing facts or ideas in terms of explanations or connecting the dots is much slower, and to be honest, my executive functioning still has gaps in processing and/or recalling. 

As someone who knows me, or who has been reading my writing this season, it’s likely (I guess I’m hopeful that) you had no idea that any of this was occurring. And that goes back to luck - as my brains baseline functioning was higher than average to start, this just means that it’s prolonged deficits are harder for the average person to detect - a huge win for me at trying to pass as fully functional, but a loss when it comes to being seen or believed when it comes to these topics especially.

Now, add in the very real effects of recently identified and not yet medicated ADHD, and I’m right back in a place that I truly hated with all my being - a place where at times I can’t mentally handle all that I used to be able to do, where I have to ask for help more often with what I consider easy tasks, and where I’m supposed to still be in the business of giving myself grace.

Except grace got thrown out the window in April with my last trauma crisis, and then I started a brand new job, and then my depression took over what was left of my functioning brain, leaving me feeling empty, naïve and flailing. 

Last week, the failing paused.

It wasn’t my depression brain talking. It wasn’t even my own short comings playing upon my insecurities - it was the very real effects of not enough recovery time from a bacterial infection in my brain, one that started with a sizable abscess and one that has not fully been put to bed.

To me, there’s a certain type of validation that comes with that. One that I wouldn’t have been able to give myself several months ago and maybe not even several weeks ago.

But last week, I was asked why I felt so frustrated. And when this is what I unearthed, I felt shocked by my own resilience - I knew I’d “reintegrated” my life since the daily effects of meningitis and the coupling 14 week migraine had subsided, but then I also had to survive and process a spontaneous surprise ectopic pregnancy which ruptured my fallopian tube requiring emergency surgery, a new job in which I wanted to show up as my best and be a consistent and confident team player, and a season where my brain has fought nearly everything i’ve tried to do, cutting me down and throwing out negative suggestions every five minutes. So for a while, I literally forgot about the infection that shut my brain down. I had regained some clarity here and there, and it seemed to be enough to function with, so I had sort of let go of the rest, assuming it would continue to heal as I went about living my life.

Well, I learned I’m still trying to heal.

Not just from the things that have happened recently. Not just from the things that I can see. And not just from the things that I continuously remember.

From all of it.

I’m sorry - this sounds and feels impossible.

But guess what? lolz theres no other choice.

If I could learn to do one more thing in this life - it would be the practice of radical acceptance. And I say that not because I don’t have the mental space or the time or energy to try to learn this - it’s because the concept has been fed to me for 11 years, and I still just can’t believe in it. I can’t wrap my mind around it. I can’t accept when good things happen to bad people. Or worse, when bad things happen to good people.

I asked my therapist yesterday what she would say about all of this, all of the items on the rapidly growing list of compounding trauma’s I’ve encountered in the three years we’ve worked together, and she noted that there just wasn’t one.

We’ve past absurd.

Pushed right around ridiculous.

Considered flabbergasted.

Played around with unfathomable.

But what comes after that? How do I explain that I’m here and I’m surviving because I have to, not because I want to, or even because I believe I can. In truth, I have no idea if I will ever reach “the other side” of this because every time I try to take {even a partial} exhale, the next shoe falls.

Or rather in this case, I fall.

I spent one or two days believing that ketamine treatments were starting to sometimes, periodically let a little of the light in, and the I missed the mat getting out of the shower and slide across the soaking wet floor, breaking my kneecap and my shin bone, and will now am unable to bear weight on my leg or even do anything on my own for a minimum of 6-12 weeks.

Seriously, yo?

Do YOU have a word/words to describe this “Amanda and the terrible, horrible, no good, very bad {day} few years” adaptation from ironically one of my favorite childhood books?

Language is always something that has helped me to process, and processing is the first step in the tune of healing. So if anything comes to mind, I’d love to hear it. Helping me find words that feel true and encompassing of my experiences would be really helpful for me - it would also make me feel like I’m not sitting in my feelings all alone.

Much thanks, friends.