In two days, it will officially have been 25 years since my symptoms of Guillain-Barre Syndrome started.
Or as my mom referred to it, my ill-a-versary.
So bizarre. And honestly, the only way I ever remember exactly when it happened is because Martin Luther King Jr. Day was involved.
Back in the day
My symptoms started on a Sunday, but only got alarming enough to seek medical attention on Monday. And I remember that it was MLK Day because the student clinic was closed.
Thankfully, my aunt’s doctor was inexplicably working that day. He misdiagnosed it — the quasi-numbness was probably weird breathing or just weakness from all of the puking I’d done — but hey at least it gave me a milestone to remember it by.
I won’t go into the nitty-gritty because it’s a long story. So if you want more details, just read my posts about the whole horrific experience.
The short form is that within three days, I was intubated in the ICU. About 36 hours after that, I’d lost all ability to move.
Three months, and three hospitals, later, I got to go home, though there was extensive physical therapy to be done. And I later found that my chronic fatigue wasn’t going away. Thankfully, at least, the nerve damage in my toes has gotten far milder and far less common. Maybe once every two or so months, it acts up.
My post-illness life
Being a Type A gal, as soon as the new school year started, I went all-in thanks to a healthy dose of denial: “It’s okay! I’m better now!” I took a full load of classes, worked at the student paper and had an active social life.
But eventually You can’t push things down any longer. I went into therapy, where I was told I had PTSD.
And so began the many, many — many — year journey to accepting the new limits I was stuck with. I spent years trying to push through the fatigue. I knew it was irrational, but I think I kind of just thought that I could somehow push through to the other side — a side without the fatigue. Or maybe I just thought that if I kept pushing the limits, they’d budge somewhat.
Whatever the reason, I spent years trying to get back to a normal level of energy, only to set myself back physically for days.
Eventually, I get it
Even when I’d accepted that the limitations weren’t going anywhere, I put off applying for disability. People in my family work. That’s what they do. So when I finally realized I couldn’t, suicidal ideation hit hard.
Mom dragged me to get my meds updated and to therapy. I had no insurance, so this was a ton of money for her — and she was in the middle of a very unpleasant divorce.
I got approved for disability, and at some point — I don’t even remember when or why, really — I accepted that I needed to modify my expectations of myself rather than keep fighting very obvious limits.
Things got much better
I found a remote job back when those rarely existed, allowing me to get off disability.
I was able to use the new job to finish paying off Tim’s student and medical debt. We even were able to start saving, though it felt like every time I turned around, something (usually Tim-related, though not always) was pushing us a step or two backward.
And as my pay went up, even with unexpected expenses, we were officially financially stable.
Then I finally allowed myself to admit I didn’t just need, but actually wanted, a divorce. The guilt of the idea that he’d be on his own financially kept me in the marriage for several years.
Since the divorce, I’ve seen my finances have grow in leaps and bounds. My depression also decreased, and I actually had the emotional bandwidth to get things done. Heck, now I’m even able to cook regularly without emotionally curling into the fetal position at the thought of food preparation.
In short
All in all, it’s been a very weird, very up-and- down 25 years.
And it’s also just surreal that it’s been a quarter century since my life was turned upside down. I’ve spent about 57% of my life being the post-GBS me.
But part of me is going back to what my first therapist said in one of the first few appointments. And that was that I had to allow myself room to grieve for what I’d lost. The future that I’d planned, the person that I’d been before I had such a traumatizing experience.
Which, because I was still firmly in denial about many things at that point, I thought was the lamest thing I’d ever heard. And then I burst out crying 20 seconds later.
The death of Theoretical Future Me
So yeah, sometimes I still mourn the future self I’d always pictured.
Don’t get me wrong: I think I was headed for a nervous breakdown before too long. I was not only emotionally damaged by some childhood trauma, I now know that I have Bipolar II disorder. So the meds I was on wouldn’t have worked long-term.
So that the future I’d always pictured was probably never going to happen anyway.
But maybe the breakdown would’ve happened early in my career. Maybe I’d have done the work in therapy and gotten myself back on track.
In the end it’s moot. Whether or not the future I had planned would’ve even been possible, that Future Me was real to me. So it’s still something that needs to be grieved once in a while.
Both things can be true
None of that is to say that I don’t appreciate where I ended up. I am incredibly fortunate. I really am really in a good spot in my life, financially and socially.
But I also still get frustrated when I have a bad fatigue day, jealous of how much healthy people are able to get done. And I’m extremely envious of people who can get by on fewer than eight hours’ sleep.
I gotta say, it’s a weird superposition to be in: grateful at how your life turned out — despite all the setbacks — but also sad for all the struggle and unhappiness those setbacks caused.
So I figured out the perfect ode to it all: this anklet.

The meanings behind it
People who’ve had Guillain-Barre always refer to it as GBS for short. And because the healing time is usually so long (think 9 months to a year minimum — my youth saved me) the joke is that it stands for Getting Better Slowly.
As a result, many ex-patients get a turtle tattoo with the letters GBS worked into the shell.
Not my inclination for two reasons:
- My nerves have been through enough already. They don’t need more trauma.
- Second, I already have indelible results of GBS, so I don’t really feel the need to permanently memorialize it yet another way.
Besides, I’ve been wanting to get an anklet in general for five or six months.
Unfortunately, most of the anklets I found online were somewhat dominated by a turtle (or multiple ones). Either there was a sizable turtle charm hanging off, or there were a bunch of mid-size ones punctuating the design in several places.
The whole point of this was to acknowledge that, while that nightmare will always be part of me (as will some side effects), it’s not the defining factor it used to be.
So I chose an anklet (silver, of course, for the anniversary) where the turtles are smaller — and they only interrupt the design only in one spot. The rest of the design is smooth and fluid. (Optimistic and heavy-handed metaphor, I know.)
Unfortunately, I only thought to order this yesterday, so I won’t have it in time for the actual anniversary. But it’s for more than just this one day, anyway.
Anyone else have an impending anniversary of something unpleasant?
Thank you for sharing. Hear you on this: I gotta say, it’s a weird superposition to be in: grateful at how your life turned out — despite all the setbacks — but also sad for all the struggle and unhappiness those setbacks caused.
And also… it’s probably the only way to live, eh?
I do have an anniversary of an unpleasant (traumatic event) coming up, and I think I need to use that as fuel/momentum for continuing on the right path for me.
“Anyone else have an impending anniversary of something unpleasant?”
Yep. Same as yours.
I’m proud of how well you’ve managed things but dammit I wish you hadn’t had to go through all that.
I understand.
Accepting what is and trying to be grateful some days is hard. Turning a negative into a positive is a gift very few are capable of doing. And you have that gift. You are also giving hope to people that are struggling. You are saying there is a way to a new normal. Seeing that someone can make a new life out of a bleak time leads others out of darkness. Keep shining a light for all of us.
I think I’m at 27 years of chronic pain this year. I’ve now spent twice as many years in pain as I’ve lived without chronic pain but maybe had the anxiety all my life. Who knows. My fibro experience was more boiling frog slowly, though. I’m still occasionally working through the grief of losing a life I thought I could have lived because like you, powering through was The One Way and losing that way has been disorienting.
We’ll keep trucking, slowly 🙂
Revanche @ A Gai Shan Life recently posted…2023 Annual Lakota Giving Project
It can be very, very hard to let go of what’s served well* all those years. The notion that some things can’t be negotiated with, argued with or simply ignored runs counter to everything we’ve learned as U.S. residents. (“Pull yourself up by your own bootstraps! When the going gets tough, the tough get going!” “God helps those who help themselves!”)
And even though you know intellectually that you can ask only so much of your body, there’s that nagging guilt that if you tried just a LITTLE BIT HARDER you would triumph.
Heck with that.
*It didn’t always serve YOU well, but others often reaped the benefits.
This is such a profound post. It sounds like it has been a really long road, I’m so glad things are going reasonably well at the moment. Gorgeous anklet!