(Written Dec. 26, 2022)
I cannot make out with my husband any more. I can kiss him, but I don’t have the lung capacity for long lip locks. I have to keep breaking away.
I’ve also learned I can no longer sustain a sound (ooooo or eeeee) and go up or down in pitch. (Is it called melisma?) I don’t have the breath for it. When I try, I just spastically staccato 3 or 4 different notes.
Just a few ongoing gifts from Long Covid.
I hit my 2 year Covid anniversary on Christmas Eve. Thinking about it makes me weep.
How irritated I was, Christmas Eve of 2020, that our plans for that evening had to be canceled. I smile wryly at the irony of it all. To think how annoyed I was that I couldn’t do what I had planned. It’s fortuitous that I did not realize that I had years ahead of me, stacked with plans I had to cancel, tasks I couldn’t complete, events I couldn’t attend, and symptoms I couldn’t understand, let alone clearly explain. And that I was just beginning a lengthy, interminable receiving line of doctors and nurses who either shrugged, dismissed, or were intrigued in an “aren’t you a fascinating specimen” kind of way.
There’s been progress. On nights like tonight it may be hard to recognize, but it’s true. And I need to state, unequivocally, that the past two years have also carried plenty of joyful moments, and countless blessings. Truly.
But I guess I’m allowing myself to mourn a bit tonight. It’s 4:48 am, and my body aches and each limb feels weighed down and cumbersome, and my breathing feels shallow and off-kilter although o2 is perfectly fine right at this second (92%).
But the body aches are keeping me up and I can’t sleep. So I figured I might as well process by writing. It’s what I do.
I’ve blogged a bit in the past about a few lessons learned along this journey. I learn them, and re-learn them, and then start to forget again. I’m obviously not great at retention, when it comes to Lessons from God.
But as I think about it, I WANT there to be growth and wisdom harvested from this horrid experience. Otherwise… what a waste. If I have to suffer, I want to learn from it.
The writer in me wants to be able to summarize the experience neatly into a tight, clear, precise thesis: Here’s the conclusion. End of story. End of suffering.
But it’s not quite that tidy.
Even with 2 years under my belt, I still haven’t given up fighting for a denouement to this story, and I’d like it sooner rather than later, thank you very much.
I want Long Covid to be a mountain I conquer. Huffing, sweaty, legs wobbly, a bit dehydrated, but eventually sitting at the summit, being cooled by the wind, and taking in the beauty and immensity of the view below me.
I want it to be a formidable and worthy opponent whom I finally conquer, bleeding and staggering, but victorious. A half nelson on the wrestling mat, with the ref pulling my weary arm to the sky in victory.
I do not want it to be a slog along I-80 through Wyoming and Nebraska, the road endlessly stretching before me, each view similar, not knowing where the summit is or even if there is one.
I do not want it to be the horror flick villain that Just Won’t Die, the one who keeps jumping out from the shadows, just when you think he is gone for good.
I want a Hero’s Journey; a resolution; a victory. Not a weary, monotonous trudge.
But perhaps I’m being a bit melodramatic. (The middle of the night can do that to a person.) I realize there have been small victories. And that I’d be a fool not to recognize it. I am significantly better than I was a year ago. Chad & my kids remind me of this when I start to feel sorry for myself.
I no longer have an o2 machine next to my bed. (Although strangely, I miss the o2, sometimes.)
My POTS is better controlled, so that I can drive most days, and thus I have regained my independence. I am less dizzy. My heart doesn’t race and jump all over like it used to. I can go to the grocery store without resting heavily on the shopping cart to steady and support myself. I can do more around the house. I can even exercise on good days. Not like I used to, but I remind myself that something is better than nothing.
And did I mention? I rode a bike for the first time in 2 years. It was blissful.
I’ve moved from an 80-85% cancellation rate to about a 15-20% cancellation rate of planned events.
So there really is much to celebrate.
But not quite enough to say, “I'm on top of this.”
My body aches most of the time, and sometimes it is quite severe. It feels like the flu.
My chest occasionally feels tight and sore, particularly after breathing exercises. I already talked about the spastic breathing. It’s like my mind forgot how to breathe, and now it seems to take concerted effort and focus to do it right.
Then there’s the fatigue. Oh, the fatigue...
My hands go numb each morning and night when I kneel to pray. And several times throughout the day. My feet also go numb quite often.
I still get occasional tinnitus in my ear.
The dizziness is better, as mentioned, but I still often have to seek out a wall to balance me. I’ll be standing and suddenly, standing up straight is a tricky business. When using stairs, I now have a white-knuckle grip on the handrail. And I’ve picked up the habit of automatically moving my hand along a nearby wall when walking.
I fight sleep issues more often. (Case in point - tonight.)
I am constantly trying to find the balance of pushing myself enough to improve and avoiding the dreaded Post Exertional Malaise crashes. But I am crashing less often than I was a year ago. So that’s something to celebrate. (Crashes are not fun.)
And in other good news, there is more research coming out about Long Covid. And some studies have been encouraging.
I’ve blogged about lessons learned, and re-learned. Things like:
Everyone has their own Hard, even when it isn't visible.
Don't compare.
My value is not my Output.
My value is not my Body.
I believe in a God of Healing. I need to actively seek out and spend time where I can encounter Him. I need to continually reach out to Him. He makes things easier.
Healing can mean many different things.
It's okay to rest.
Progress isn't always linear.
It's important to take care of myself.
Life is a gift.
I can reach out to others, even when I don't feel good. Connections bring joy.
(Anyone feel like they are in a greeting card factory explosion?)
But one lesson I still am having trouble with is the difficulty of the Ongoing Trial.
It’s one thing to say, “This sucks” but still recognize that at the end of the day, or week, or month, it will be over. It’s another thing to navigate it when the end isn’t in sight.
The difficult relationship, despite sacrifice and herculean efforts to improve it.
The job that you hate, with no prospects for promotion.
The childlessness that doesn’t look like there will be a Sarah and Abraham ending to it.
The Long Game can be brutal.
What I am starting to realize, and trying to get a buy-in from my heart about, is that I can’t be so focused on that Takedown Moment. I can’t postpone my happiness for the denouement.
I have to just put one foot in front of the other, and be happy for good walking shoes, kind companions on the journey, and the knowledge that God is real, He is loving, and He is near.
I’m still not happy to be on this path. In fact, I’m quite cranky about it.
But I can at least try to notice the beauties of the backdrop.
Elder Neal A. Maxwell called it “enduring well”. But then again, my problem is I don’t want to “endure”, I want to “conquer”.
We don’t always get what we want in life.
And we can get stuck or move.
Most days I choose to move.
So I will have my messy, snot-smearing cry tonight, and then I will keep trudging along with my clumsy, heavy, weak, overweight body.
Because there is a lot of loveliness, even on I-80.
And I choose to have Hope God can help me find it.