A Limp and Ragged Rant

I’ve been having trouble reading. Oh, I can still understand audiobooks, but I work harder trying to decode the words in print. Letters flip. Words switch into similar words before my eyes. It takes longer and gives me a headache to remember what I read. It’s the long-Covid brain injury stuff.

The term brain fog doesn’t have enough impact. People think it’s like when you have a hangover or the flu. It is like that at first, but after a few months, it’s more intense.

Sometimes, I wake up and my hand is crabbed into this position with my wrist clenched forward and my fingers splayed. Sometimes, when I’ve done too much, I get a feeling of being lost. I shake when I’m tired, type double letters, drop things, can’t write long-hand, and spill food. I repeat myself, forget to tell doctors my main complaint, and have things on my todo list that I don’t do for some reason other than forgetting or being too busy.

I miss my brain. I miss being an organized person. I miss being creative and working with plants on my back deck. I miss knowing how to end a good rant.

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

Remember

I keep trying to remember everything, but I just can’t. If I remember to write in the morning, I forget to take my pills. If I remember to take down the garbage, I forget to clean the cats’ litter boxes. I have trouble filling my pill containers with a list. I can carry on a conversation, but I forget to tell the main idea of a story, or I fall into drunk talking when I’m tired but don’t recognize it until later when I’ve rested. There are stories I’ve told that I had only ever told Mike and Nick. I make lists then forget to check them.

I drop things too. Three days ago, I broke two bowls in one fell swoop. What the heck is a fell swoop? A few weeks ago, I broke one of my grandma’s glasses. The other day, after I broke the bowls, I swept up a pill from the floor that I must have dropped. I’m glad the cats were smart enough not to eat it.

Yet, I can still remember the list of words the cranial, carotid, cognitive therapist gave me to test my memory. I made them into a story: candle sugar wagon hotel farmer village sandwich feather artist paper. It was a stupid story, but it was a story and now I can still remember it even though I don’t need to. I still work fairly well on exercises with my students, though my lessons are getting a little repetitive. Don’t worry. I’m on it. I have a list of concepts that I often forget to check.

But I can still see beauty in the world. I can still comprehend and appreciate geometry, visualize the planets spiraling behind the sun as it rushes its own orbit around a black hole, and hopefully write a decent sentence though my spelling is slipping away and, now that I look at it, my sentence structures are simplifying themselves. Dammit, I’ll have to do some editing. Editing is exhausting.

It’s hard to find a bright side to this. There are so many things on my body I would have preferred to break instead of breaking my brain. Maybe you’ll be entertained and enlightened as I spiral into my black hole. Maybe it’ll just be tragic with no redeeming features.

Thank you for listening, jules

Finding the Infinite in What is Limited

I’ll admit that it’s hard to look forward to a new year, hard to consider making resolutions, hard to anticipate trying anything new, when every tiny step of the last year was so heavy to make. I feel lonely that people don’t understand: I struggle to smile and to set aside pain when I’m with them. Later, in the silence, when I’m alone, I can admit I’m out of breath, how my chest aches, how I feel like a runner who vomits after giving her all, how my ears ring, how I need time to cry, and how my hands shake as I carry a cup of tea. It’s hard to anticipate the year ahead. I know how hard it’s going to be.

But here it is. I am making a resolution after all.

My resolution is to keep trying, no matter how challenging every day is, to stand upright, to keep trying to learn, and to keep taking one shuffling step after another even though every one is hard to take. I’m going to try to find the infinite within my limited life. I’m going to try to tell you what I see in what is small and what seems ordinary.

Welcome to 2022.

Thank you for listening, jules

The Building is On Fire

I’m sitting in my cool room in front of the computer. I’ve just now woken up. I’m wearing my old jacket and, though it’s getting hot outside, I’m still too cool to take it off. I’m wearing fuzzy slippers. I don’t get warm as easily as most other people do. Should I have to take off my own jacket because they tell me I should be too hot when I’m not?

I also have the sensation of just having run a long distance, that jittery noodle sensation I used to get afterward. My chest hurts and my heart pounds and flutters. I have a sour taste in my mouth. My diaphragm feels a bit tight. My vision wobbles and my eyes cross now and then. My ears are ringing. I feel as though I should heave and hold my sides as I cool down after that race or very long hike. I know what that feels like. I used to hike ten to sixteen miles at a time. I feel as though I need a refreshing drink too, preferably one with sugar and a little salt in it. All of those sensations, for my whole previous life, have told me that I need to take a rest, prop up my feet, take a load off after working hard for a long time.

But my doctors are telling me that they don’t see much of anything going wrong with my body. I’ve just now gotten out of bed and already, I have this feeling. I feel it in my heart, my lungs, in my muscles, and in my eyes. I feel a thrumming sensation throughout my gut, my hands and my feet. If I ignore this feeling, and I can ignore this feeling because my doctors tell me they don’t see anything wrong with any of the systems that I’ve had tested, my symptoms invariably worsen. I will begin to shake visibly. I will feel as though someone has punched me in the sternum. I will feel like throwing up. I’ll drop things and get dizzy. The roar in my ears will make it hard to hear anything else and my vision will begin to close down around the edges with either light or darkness. My chest pain will radiate down my left arm as if electricity were running through it.

All my life, I’ve had these physical warnings of imminent collapse after hard exercise, and I’ve been taught to pay attention to them. Now, I’m being expected to get up, ignore the warning signs, and keep moving. I’m expected to talk to people and act like none of this is happening to me.

It’s like trying to sit quietly at my desk and do my schoolwork when the fire alarm sounds, people run for the doors, the smell of smoke makes it hard to breathe, and the building begins to shudder.