Alternate title:  “Why I didn’t write an inspirational goodbye to 2020,” by Bethy Bright and Dark. It felt too long? Not punchy enough? Too literal maybe?

You know I’ve given in and done it in the past.

I was so young (in MS Years which are kind of like dog years but worse). The lure of looking back on the year with all of the idealized thoughts about what that meant for my future was too seductive for me to resist. My first end of year post in 2016 after exactly one year of officially having multiple sclerosis was particularly popular, and upon looking back, extra cringey to me. I mean, nicely done past-version of me, but oh my! The naivete! It’s almost darling. Click this link and feel it with me, folks. Awwww…you’re cute, baby BBAD.

The year-ending writing for 2017 was a lot more realistic, to be sure, but things for me and my MS hadn’t gotten as ugly as they would after my first round of Lemtrada in 2018. I still had some of the bright and shiny about me, but I was beginning to get the hint that things might be a bit more complicated than I first thought. See for yourself right here.

I continued to look back in 2018, but I was still clinging to hope that the next year would bring me big positive changes that I can now say, with great certainty, would not be coming. Hope is like a drug. It was my drug of choice, along with a shiny new disease modifying therapy to give my hope real teeth. The headline got a little more on the nose, you could say, if you’d like to see for yourself right here.

The year-end of 2019 kind of did the same thing. I was seeing a definite pattern and it felt rather bleak but still I clung to my hope that I had some control over what was coming – in that case it was baclofen pump surgery scheduled in early 2020 before I ever had a clue what Inpatient Rehab meant or what a Corona virus was. Hope. You can read it in my slightly more realistic end-of-year words right here.

Being realistic about the past didn’t stop me from seeing some idealized version of myself on the road ahead, where my last year’s losses became the next year’s gains.

Coming back was my constant theme. I could come back! I would come back. I’d get back some of what I’d lost in the past year even if it was just a tiny piece. Every tiny piece of my pre-MS wholeness that I could claim or aim to recover meant the coming year had to be better in some way. It just had to because the alternative was unthinkable.

I wonder sometimes which part of the A-TYPICAL AGGRESSIVE CHRONIC PROGRESSIVE DISEASE memo I skimmed over, but to be fair, none of my illustrious medical team was ever as straight with me as I longed for them to be and that’s likely because they didn’t know either. The straight-faced doctor from The Cleveland Clinic was the most direct with me. She’s not at the Cleveland Clinic anymore but I will be forever grateful for her lack of flim-flam vagueness:  “There’s nothing available to us right now to fix this kind of damage,” said Dr. Cleveland Clinic. ‘I’m so sorry.'”

2020 though. Amirite?

I won’t write more about how much 2020 kicked my ass. Yeah yeah yeah. I know. It sucked for everyone. I get that. But three, count ’em, three month-plus long inpatient stays in the hospital during a pandemic felt like some kind of special torture. Yes people have survived a lot worse. It’s just that I haven’t. Not so far anyway.

It’s what I find myself doing now, since getting home again, that kind of blows my mind a little.

“I was able to walk 40 feet after the last time I got out of the hospital why can’t I do that now?”

“My toes weren’t as badly curled at this time eight months ago, why can’t they be that way again?”

“I could stand up without holding on to pull up my pants six months ago I should be able to do that now.”

“This neck pain didn’t exist five weeks ago. I never needed to use so many ice packs in the past why do I need them now?”

“I never had problems with my hands before. When will this numbness and burning go away already?”

I could go on but you get the picture.

The allure of better versions of me that existed a few months or a few years ago is irresistible. I look back and wonder when I’ll get back to that better, more able, less diseased version of me. It’s a tape that plays over and over in my mind on a loop until I think I’ll lose my mind.

Here’s the thing. Those versions of me are gone. Just like yesterday’s rain or last week’s snowfall. Constantly looking back and thinking I see something so much better than I see ahead of me – or worse – what I see when I look in the mirror at any given moment – is perhaps the worst symptom of this chronic disease I’ve been living with.

I used to think the worst symptom of multiple sclerosis was fear. I now firmly believe the regret and wishful thinking for past versions of myself is so much worse. It’s like how aging feels but at supersonic speed. Aging sneaks up on you. My MS progression is relentlessly current and timely. I’m not only grieving what I lost last year and the year before that and the year before that. I’m grieving what I lost last month.

It’s exhausting and completely unproductive. If wishes were horses beggars would ride, as my mother used to tell me when I was young and healthy and trying to max out my The Limited credit card, and goddamn if she wasn’t right again. She’s pretty much always right.

It seems like the second I got all excited and giddy about how much easier my life was with my spiffy matte black wheelchair, I began wistfully longing for the days when I didn’t need it. Those days are gone. GONE. And I was ok with that idea because hell! Struggling to walk when you can’t fucking walk because you have a real-ass aggressive disease is not any kind of fun. Wheeling around my new, wide open and accessible home is a thousand times better.

The allure of past-versions of me is real. Insidiously so.

“Remember when you used to be able to take a drive with the top down? Maybe you can do that again if you try hard enough.”

Um. No. Maybe I could do that again if I learn to use hand controls but not if I just try hard enough. There’s not enough trying in the world that could make that version of me come back again. So when spring comes, I’ll talk to Franzi about that driver training but wishing for legs that can operate a vehicle simply won’t make it so.

I don’t want to look back on 2020. I also don’t want to look back to 2019, 2018 or any other year when this disease wasn’t making me what I am right now. All I have is right now. All I want to think about is right now. That, in the end, is the true lesson I need to learn.

What I am right now has to be enough.

That is the biggest challenge facing me today and it will be the biggest challenge facing me as I look at 2022, 2023 and 2024. I mean. If the universe’s plan has me getting those years they will be a hell of a lot better if I don’t try to drag rear view mirror images of myself into my present. The present is hard enough without that kind of extra baggage.

So this isn’t my “good-bye 2020 you suck-ass year” post. This is my remember to appreciate what you have right now, post.

Grace. Gratitude. Determination. Every right now. That is my challenge and forever practice.

Wish me luck. I wish you the same.