Thoughts on my silver anniversary of illness

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?