A blog about my experience with chronic illness and finding hope in the darkest days

Month: November 2020

Grief and Gratitude

Thanksgiving is universally weird this year and truth be told, I’m relieved.

I don’t think I had it in me to participate in a normal holiday season, sitting around tables full of food I can’t eat, trying to resurrect old traditions that were made by a much different version of myself. These days, traditions only remind me of how much I’ve changed, how much of my old life I’ve had to let go of, and how much my dysfunctional body continues to reject typical norms.

Picture of a sad turkey, in appropriate 2020 fashion.

Today is the national day of food and I’ve found myself nursing a flare of stomach issues. This is fine because I can’t eat large, glutenous Thanksgiving meals anyways, but nevertheless is a painful reminder that chronic illness gives no days off. POTS is my annoying plus-one to everything, showing up uninvited but aggressively announced.

Today is also the national day of giving thanks, which brings up complicated emotions for me.

I have a lot to be thankful for. Rarely is this lost on me.

I’m thankful for my family, for their big smiles and enjoyable company. I’m thankful for their good health as well as the improvement of my own.

I’m thankful for friends that send kind texts and funny TikToks. I’m thankful they choose to stick around, despite the many years passed or the miles between us. 

I’m thankful I woke up this morning, that I saw a beautiful bluejay in front of my home and heard him call out to me.

I’m thankful that I’m still here.

I’m thankful that life got better.

But whatever I am grateful for, there is grief there too.

While I am grateful that unlike this time last year, I now have a diagnosis for my collection of symptoms, a name to my pain that unlocked life-changing resources, I am also devastated that I needed a diagnosis in the first place.

While I am grateful for my therapist, as well as my physical therapists, my dietician, my doctors and anyone else that helps me be well, I am also filled with heartache that it took two years of medical trauma in order to find them.

While I am thankful for all I have learned from POTS, for the wisdom found within hardship and the knowledge of how to take care of my body, I am also deeply sad that it’s been three years of symptoms, tainted holidays, and enduring what should be fun events.

My gratitude and grief exist together, intertwined. They are a package-deal that can’t be separated, and believe me, I’ve tried. But I have found that when I stifle my grief, my gratitude weakens, becoming diluted and flimsy. Without my grief, my gratitude means little, and without gratitude, I only have grief.

So on this national holiday dedicated to Thanks-giving, I try to make space for my grief too, alongside all the other emotions that aren’t traditionally acceptable at holiday gatherings. I invite grief to the socially-distanced party, set a place for it at the table, letting it know it’s welcome here, with me. 

Wanna Trade?

Yesterday, a worker at Whole Foods caught my eye. It wasn’t so much that I was attracted to him except yeah, probably a little. It was more so that I was attracted to what he was doing: standing outside the store’s entrance, sanitizing grocery carts and noting how many customers walked through the doors.

Fascinating, isn’t it? Just enthralling, right?

Kidding, though only partly because I actually was intrigued.

I was intrigued because as he leaned against the wall, drumming his fingers on the beige concrete, I was peering out my car window, thinking of all I would give to trade places with him.

He probably didn’t know his job is a challenge for someone like me. He was probably unaware that while he was standing in the sun with ease, I was watching from afar, boiling with raging envy. Frankly, he probably takes his whole gig for granted, and for that, I really can’t blame him.

I know with absolute certainty my old self would’ve done the same. Without even closing my eyes, I can see 17-year old me leaning against that wall, checking my phone periodically, willing the time to move faster. Years ago, I was unaware that standing is a privilege, that it could and would be stolen for me, over and over again. My old self took it all for granted too, each and every day, and to that I say, of course she did. She didn’t know how much she could lose.

Even so, in my envious state, I’m convinced if it were me in that job, I’d cherish every minute of it. My yearning persuades me that for the rest of my life, the art of standing will never be lost on me; that every successful hour on my feet will feel victorious, euphoric even. I know I’m being generous, and eventually the novelty of standing will wear off. But staring at that Whole Foods worker on a warm Friday afternoon, I felt assured that what to him is probably considered mundane, will forever feel miraculous to me.

It is worth noting my stop at Whole Foods took place following a physical therapy session, so POTS was certainly heavy on the brain. But it always is, that’s nothing new. POTS is with me wherever I go.

I’m aware, all things considered, that I could do that job, right now, if I wanted to. I’d need a stool, maybe a fan, but I could do it. And that would be okay, to need a stool or other accommodations, except that I don’t want a stool. I want to stand in the sun in front of Whole Foods, greeting people for hours until everyone went home. And I want to feel well, up on my feet, without the dizziness and high heart rate that usually ensues. And I want to leave that shift without feeling utterly exhausted, and I want to wake up the next day and do it all over again.

I want to do that job and I want it to be easy. I want to feel so well, sanitizing those carts, that I dare to bravely deem myself bored. I want to feel so normal, standing there in the glorious sun, that for the first in a long time, I take it all for granted too.

If I were more brave and cared less of what others think, I would tell people these things. I would walk up to them and scream into their face, “Don’t you know how lucky you are?” In my daydreams, I do.

But in real life, I sit inside my car, nursing my longing, swallowing my rage. I fiddle with the radio, tuning out words I never say, waiting for my mother to eventually return with the groceries.

She does, puts them in the trunk, I put the car in drive. I hear the click of her seatbelt next to me, and then, we drive away.

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