brain fog

Planting Seedlings and Publishing Books

I still live in a dual world, it seems. During the day, I face outward. What do I need to do today? Dishes, groceries, library pickups, preparation for my students, something that Nick and Mike need or would love to eat, connections with friends and family, especially socially approved connections with friends and family. I worry about looking weird. During the day, I act my age.

With long Covid, this has gotten more polarized, this differences between showing the authentic parts of me and trying to hide them.

At night and early in the morning, I wake, knowing what I really need to do in my lifetime, knowing what I need to do just for me, because it’s important to me alone, because it reflects my beliefs and my vision of who I am in the world. This morning, I woke at 4:44 am. I like those numbers, 4, 4, and 4. I’m here as my quirky self. Instead of the normal one who plans her day around going to the grocery store. In the middle of the night, I try to plan how I might ask someone to go into the woods with me somewhere nice and do some ninja planting so my baby Western red cedar trees will have homes before I die. I plan how someone says they’re going for a hike, and I can give them one and they’ll plant it in a stand of other cedars and maples in a beautiful place. Maybe they’ll think of me when they walk by there over the years. I envision these little sprites as strong and tall and sucking in tons of carbon dioxide for years to come. I picture them with families of other trees, reserving water and nutrients for the plants they host beneath them, conversing quietly through the mycelium network under dead leaves. Western red cedars like growing with maple trees. These baby trees were given to me in my flowerpots by my grandmother trees that stand around my house, trees that have hosted me and my family for thirty-one years. I love them. I mourned that some of the seedlings died in my care over the winter. When it starts to rain, I want to go into the woods to my favorite places with a trowel and a canteen of water and kneel down in a good place and plant my baby trees. The Forest Theatre, the Snoqualmie trail, Twin Falls, Beaver Lake, Lake Alice, the Snoqualmie river, Little Si, Rattlesnake Lake, the Snoqualmie Pass. I want them to grow as a blessing to the places I’ve wandered. It’s weird. I know it is. But at night, I don’t care what people think of me. I want to accomplish the things that I need to accomplish before I die or at least before I lose my mind.

At night, my unfinished books seem like broken things, fragments of pottery scattered on the floor around me. I have at least five, maybe six or seven to finish. Why is a book about a cat important? If I do it right, you’d understand after you read it. No matter how hard I try to sweep these fragments up and glue them together, they don’t come together. My mind has trouble doing the things that are required to put them together, executive function, revising, editing, and uploading them. The writer me has gone into hiding again. In 2017, when I was out and honest about being a writer, those were the happiest days of my life. I don’t want to die before I finish my books. I feel the pressure of time. I always have, but now it’s worse. But when I’ve asked for help, people didn’t know how important it was to me or maybe they were uncomfortable because my impetus to ask for help is that my brain is injured or dying. People don’t want to stare those things straight in the face.

I do.

I need desperately to talk to people about the beauty of life in the face of dying. It’s important for me to talk openly about brain injury from long Covid, from dementia, from whatever, so that other people don’t have to quietly feel so ashamed if it happens to them. At night, I feel the right to think of what I need to do. Me.

In the morning and throughout the day, I turn to what other people want me to do or how I’m supposed to look to the world. These deepest desires suck back inside me and sound unimportant, frivolous, pathetic. The world has to turn. People are busy. There are groceries to buy, meals to cook, television shows to watch, appearances to keep up. Don’t look at the face of a woman who is slowly, inexorably, losing her mind. Don’t let’s let her look strange in public. Those baby Western red cedars and those unfinished books are only important to her and to no one else.

What is that weird thing that you want to accomplish before you die that matters to no one else but you?

Thank you for listening, jules

To Lose a Soul

Last weekend, I shifted into another level of my reality. I’ve come to grips with the fact I will probably die earlier than I would have without long-Covid. I’m okay with that. I’ve grieved over it, made preparations. I’m finally mucking through with the things I need to finish before I die and I feel loved. I feel deeply loved. Dying is okay when you’ve felt your purpose and you’ve been loved. Well, it’s not exactly easy, but it’s a reality I’ll be ready to face when it comes.

But getting lost as I walked back to my car was a reality I hadn’t prepared for. I could end up being a person who forgets who I am. I could forget who loves me. So, I spent the weekend grieving. I did. I leaned over during a movie we were watching and told Mike that Dr. Kevorkian had a point. Mike paused the movie and we talked for a while about the progression from getting lost to being lost. I talked about how the point I’d want to do a kevorian would be a point beyond which I’d recognize him and Nick or even be aware of myself. It was a conundrum.

“You’re not there yet,” he said. “Not even close.” It helped, but not a lot. So, I sat in front of the TV and burned battery time on my phone playing Solitaire. And I grieved.

What is worse than death? Is it losing your body as your mind continues to reel through its ideas and conversations or is it losing your mind, and knowing it, and not dying before you sink into the muck of never being able to recognize your son or say, “Thank you, Sweetie,” when your husband brings you a plate of hot food?

Do I continue to write so you can see when the confusion takes over and I have no coherent ideas left? Is that a legacy I want to leave to the world?

My cognitive therapist says the long Covid may not progress that way or that far. I tried to smile and nod, but inside my head, I didn’t feel her hope. I still don’t. I know I have more time to bumble about at home, feeling loved, and not being responsible for too much, but I dread the end, the weight of my confusion making Mike and Nick’s lives impossible and turning them into strangers. I don’t want to do that. I also don’t want to suck down thousands of dollars at a home having no significant way to appreciate the painting classes, the card games, and the prepared meals. I don’t want to lose my soul as my brain deteriorates. Will I lose my soul?

That sounds like hell to me.

Thank you for listening, jules

Orienteering

Sometimes, I decide to make the best of my uncertain future. Sometimes, it puts me into new territory and I don’t feel at all confident. I’ve been feeling lost on occasion. It’s usually only a minute or less. The other day, after taking a picture of my car in its parking spot, and after taking a photo of a street sign, but not a very good one, I walked about a block to a small shopping center. I wanted something to eat, that bookstore on the map app, and a place to pass some time between my cognitive therapy and my occupational therapy sessions.

Lunch was good, but the bookstore was gone, vanished, kaput. Damn. I’ve bought way too many books on Amazon. We all have. I miss shopping in a real bookstore.

I decided to walk back to my car and find a shady place to sit and read. I had plenty of reading to do. But as I walked, I realized I was tired and had that extra fatigue that accompanied having a meal. Did you know how much energy it takes to digest a meal? I learned that fact with the onset of long-Covid. I walked along, but I couldn’t figure out where I’d parked my car. And I had to keep walking or sit on the sidewalk if I needed to rest. Suddenly, I’ve become a connoisseur of benches. The light of the sunny day sparkled my peripheral vision. That didn’t help. I took a couple deep, slow breaths. It wasn’t that far away. I would be okay. I took another slow deep breath. I would, I promised myself, be okay.

I took out my phone and realized that the picture of the sign I took only showed one of the streets but the other was obscured by the angle of the shot. Stupid. I connected the street I knew with my phone’s navigator. I’d have to revise my use of the word stupid.

Crap! I was still disoriented. Did I park east of the shopping center or south? I looked at the picture of my car parked on a lovely residential street with a chestnut tree. I tried to remember my walking route an hour earlier. I had stopped and turned a corner to take the picture and I left the tree-lined streets. A cyclist had stopped abruptly as she raced out of an alleyway. Had I been invisible? We’ll talk about the way middle-aged women become invisible some other time. I still couldn’t figure out where I’d left my car. After the cyclist, I had turned the corner to the shopping center where I could get a sandwich. Easy-peasy, or it should have been.

I was on the other side of everything familiar now, the building, the block, my mind. I couldn’t be more than a block and a half from my car. I kept walking and tried to look not lost. I tried to settle myself without quite knowing where I’d left my car. Then, I saw the biker’s alley. You know, this whole episode was less than three or four minutes. I wasn’t hot or excessively tired or afraid. I was, however, disoriented.

I spent the weekend grieving over my brain. It’s hard to stay serene when it’s your brain that you’re losing.

Thank you for listening, jules