The Mighty Logo

The Memory That Transforms My Hardest Days With Lupus

The most helpful emails in health
Browse our free newsletters

When the world was busy falling apart, it seemed like my world was saying, “Hey, cue the music,” and the floor was starting to crumble from beneath me. It was poetic I suppose — poetry is the only thing that ever came easily to me.

I’ve come to learn that pain is quite powerful, and chronic pain can wear away at you — etch you in places you haven’t even known before.

It’s my mid-morning escape — perhaps meditative, perhaps spiritual, maybe even transcending. I climb into my bed feeling broken, and my handful of morning pills do little to sew me back together. In these darkest moments, illness takes over every piece of me.

I lie there in my dark, silent bedroom with the rest of the world moving along outside my walls. I imagine a missed morning commute, a frosty car window, a cup of hot coffee, and the way sunlight bounces off the downtown St. Paul skyline. I see the faces of my co-workers, missed morning meetings, office gossip, and laughter with my patients. That’s what it seems I am missing the most: impromptu laughter.

Pain settles deeply into each and every joint, while ceaseless nerve pain travels from my shoulders to my elbows and from my hips to my knees. It creates a highway of seemingly senseless, painful destruction. Lupus, you are cruel, uninvited, and unforgiving.

I force my defiant body to become heavier and heavier, pushing myself into the depths of my bed, pushing myself further and further away from this illness. I move further and further not only from the destructive pain but also from the loss of impromptu laughter and morning skylines.

Seeking solace, perhaps I have brought myself to this transcending place, or maybe I’ve been led here. It feels like the latter, too rich in immeasurable love for happenstance. I am immensely grateful all the same.

She is tall and slender, and her embrace is soft. She wears fake pearls and full lipstick and smells of perfume and Budweiser. Her apartment is there for me, and I am small, probably 7 years old.

Nine or 10 city blocks separate her Grand Avenue apartment and my downtown St. Paul office, where if all were well, I would be in laughter and vocation. Decades separate us too — more than three decades since her passing — but time and death as well as the separation of this world and our next must be inconsequential. Somehow all of these degrees of detachment have blurred — and her presence is real all the same.

She leaves this place for me and I learn to bring myself back. I return to her whenever my body defies me.

Another day of sunlight beyond my walls.

After opening my bedroom door and crawling back into my unmade bed, this world moves along without me. I deliver my “broken” body, pushing it deep through the core of my bed. It seems the heavier my pain is, the easier it is to fade away and find my way to this woman — my grandmother.

I make myself small. I climb each rich mahogany stair that leads up to her third-floor apartment. My Mary Janes proudly announce my arrival, echoing in the vastness of the grand staircase. I wear a white ruffled shirt and corduroy pants. My mousy blonde hair is pushed back with sweet barrettes. The pain melts away when I am small.

Once I reach the third floor landing, her apartment is on the left side. It has an ornate 1920s knob on the door. I reach for it and enter. All of her things are just as they always were. She offers me her warm embrace but says nothing. Her eyes are soft and knowing. Sometimes I hear the sounds of the city through her open bedroom window — pleasant and hushed. Childhood memories play briefly in pastels in the corners of her living room — and then they fade away. I curl up on the tightly woven plum-colored carpet. I’ve come here to rest. I have no pain, and I have no worry. I drift away, in both of our worlds, I suspect.

I’ve found refuge here.

I can’t begin to understand the mysteries of this world or the next, but I do know that when I seek solace, He has carved a place for me, and she is there — in pearls and full of love.

Getty image by Egle Jociute / EyeEm

Originally published: December 13, 2022
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home