Becoming the Cardboard Cutout

I have come to exist in a different space, part in and part out of the world I thought I knew, definitely out of the understanding of some people I know and still love. I am talking about disability, Long Covid, perpetual illness. I can’t think of the right word, enduring, long-lasting, never improving illness. I have a disabled placard now, though I can’t possibly explain to them how someone feels who needs a wheelchair. I do know, however, the difference between the days when I choose not to use the space because I have enough energy and the days when I wouldn’t be able to make the stop at the grocery store if I couldn’t park in the handicap spot and yet I and still feel like an imposter. I silently argue with the imagined person who yells at me for using the space when I don’t deserve to use it. I’ve planned my retort, but it never sounds sufficient in my mind’s ear. But that’s not why I came here to write.

I want to tell you about people I lost, though they cheerfully flit in and out of my life, never being able to see who I am now, only seeing the person they used to know or someone else who needs to have things explained to her, slowly and a little louder than is normal. Mike—remember Mike? My husband? The one who understands what is happening to me? Mike says that since those people don’t see me during my recovery days, the days that inevitably happen after they visit, they’ll never understand. They don’t see that it takes three or more days in bed or on the recliner to recover after they’ve gone and the smile has slid from my face.

Just now, I opened a window that is usually closed then lifted my skittish cat to put him onto the space I made for him. It’s oddly balmy outside and I thought he’d enjoy it. Instead, he struggled in my arms and leaped away, but when I arranged a towel and sat back down here with my words, he got up in the spot himself and glared at me. Then, I apologized to him, telling him I should have known he could get there on his own without my help. Or not. I should understand these people whose authentic presence in my life I mourn like a lost limb. They too are skittish. Death and disability are ugly and frightening, not a way of life but something, and someone, to be avoided. I am not the person they knew. They close their eyes to who I am now and see only the cardboard cutout of who I used to be. It’s hard to be the cardboard cutout, never filling three dimensions, speaking into empty space and seeing that they hear nothing.

They will jump into the cozy spot I cleared for them on their own and in their own time. Or they won’t.

Thank you for listening, jules

5:54 AM

A Jumble of words

Frustration

Unfinished everything

After-the-race cramping

A daily slog through waist-deep mud

Half of a thought

Vicarious traveling

When someone laughed at my trouble

Extra gravity

Double or triple my weight

Pinpricks don’t bleed

Invisible wounds

Shrunken eyes

Double vision

Three-week headaches

Disappeared

No one noticed

The sound of static screaming

Sleep overcomes me

Clinging to the railing

Forgetting the plot

Forgetting that I read it

At all

Can I imagine

Ten more years

Of this?

Indifferent and Imminent

Mike and I are watching The Three-Body Problem, I finished reading The Hundred Years War on Palestine, and now, I’m reading The Sweetness of Water. In each of them, there are characters I relate to, Will Downing, who’s sent into space alive but not quite alive to travel for hundreds of years, the people of Palestine who have had their land, ways of life, and lives stolen from them by a people who want to deny their millennial hold on their homes and eradicate them, and Isabelle who realizes that she is on her own, completely alone and free, despite being surrounded by people who love her. Will Downing gave up on the love of his life and spending his last weeks with her. The people of Palestine barely continue to exist without land, money, food, and even a water supply of their own. And Isabelle gives up knitting and tending her roses as being productive suddenly seems futile.

I wonder what I would think about travelling thousands of miles over a few hundred years being disconnected from everyone? Would I focus on futility or beauty? I wonder why I water and feed my plants and the hummingbirds. They would live and die on their own. Don’t worry. I’ll care for anyone who’s dependent on me. I just get sad when I think I’m helping someone, and yet it doesn’t work or it’s not enough. The vet technician lectured me on how fat Blitz was and how long his claws had grown. I was so ashamed. And I wonder about people who exist despite all their suffering. Am I comparing my life to the genocide of millions of people? Maybe I am. I know that’s selfish but no matter how much pain I am in, no matter how deep the fatigue, and despite the daily temporary loss of my faculties, people don’t seem to see me or hear me. People ignored the plight of the Palestinians until just now when they’ve become the most recent sympathy-fad. Where will they be in a year or two when we forget them again, still struggling to survive? And Isabelle, out in the wilderness, losing her son and finding him again, but different, not connecting with her free-range husband. The forest will reclaim it all after she’s gone. Why should she fight it?

I used to write every day, sometimes six or seven pages a day. I felt an urge to write, almost a panic that I might not finish in time. I thought that people wanted to know my stories. Now, I wonder who would ever read any of it anyway. If they do read it, would my stories matter? Am I like Will, whose thoughts go into the void forever and ever without ever connecting? Why bother putting in on paper if no one wants to hear? Why not cry out to empty space?

Mike listens. Nick listens. My cats and my hummingbirds listen. They love when I tell them how amazing they are. I live for them. If I continue to write, it’s for them too, even if they never read it. Pain is exhausting, but there’s a beauty to the life around me as I lie in place and watch it spin. The children I see are tender and spirited and unique. My friends are wrapped up in the cycle of their lovely lives, their families, and their interests. Do people see the intricacies and magic in this world, in the tiny organisms, in the delicate balance of our orbit in space, in the love that keeps each of them breathing?

But what makes me think they need me to show them? The progression of life and death, life and death, new indifferent life and imminent death, will reclaim me and all my words too. Why should I fight it?

Surpassing the IDGAF Crew

So much existential angst. I’ve begun to wonder why it matters if I write. Who cares? This seems to be the season of IDGAF in our world. Or have I been cruising too much social media and people really do still care?

I sit in my little room with Blitz lying on the quilt behind me. He likes to come to zoom meetings with me, so he’s here now. When he heard that I was awake, he came in and asked, “Mmm?” When did I first notice that that he does that every day? I turn around in my seat and say, “Mmm?” back to him. Then I pet his floofy belly and we blink at each other for a bit. I’ve been trained. When I go upstairs, my old Seth will chirrup at me too and I’ll go over and greet him good morning. Of course, I will. I haven’t talked to him in about six hours. My post-Covid condition has been good for him. He’s an eighteen-year-old cat with a frequently available lap. Mike and I will repeat our morning words, like birdsong, they come out mostly the same, over and over again. It’s a comfort.

So, back to the season of IDGAF. Yesterday, I didn’t have a perky face to do a selfie with as I stood in the foreground with Blitz as he tried to crawl into the new deck umbrella box I got for Christmas. Close your eyes and picture a five-by-five-by-eighty-inch box with both ends opened. Then picture old Seth who put his head and shoulders into the space, realized how it would affect his arthritis and backed out. Then, Blitz gave it a try because Seth did. He pushed in as far as he could go. His belly regrouped, bunched, and shuffled. Eventually, even Blitz backed out. He tried this a couple of times, but no, he didn’t get stuck. I’m glad for that. He’s silly. He’s a chonk. He’s always going to act like a baby cat. But he’s not stupid. You can picture it, but don’t try to imagine me in the foreground looking casually made up with pouty lips and arched back. I haven’t combed my hair this morning and my back doesn’t arch in a photogenic way because of arthritis in it.

So, did that get past the IDGAF crew! I doubt it. I don’t even know if people read blogs anymore. I just hate to get rid of this one because I didn’t backup some of it and I don’t remember which. It still matters to me. I’m not sure why, but it does. For now, I’m going to go make instant coffee, tea for Mike, cat food for the kits, and toast. If I take my coffee out on the deck to watch the hummingbirds, they will give me a morning chirrup too and I will repeat my birdsong of ‘Hi, Baby, hi baby, hi Baby’ to them. I’ve been talking to the new little bat roosting near the heated hummingbird feeder too. He may not hear me though because I think he’s hibernating.

Have I been cute enough to get past the IDGAF crew? It’s probably irrelevant because they all reside in my mind too. And idea is hard to kill. I’ll remember this when I scroll past so many perky faces and talking pouty lips who are also trying to be relevant in this jaded world.

Thank you for listening, jules

I've Become an Annoyance

Hiya.

I’ve reached a level in my brain injury that I seem to be annoying some people, even when I tell them about the things I try so hard not to do. I babble on and on as if I’m drunk. When I get tired, I talk out loud to walk myself through difficult tasks. Actually, my cognitive therapist said I should talk it out. I repeat myself. I have trouble stopping or leaving when I’m sitting down and I’m tired. The best part of this one is that I told my students about these difficulties and they happily let me know when they’re finished. No drama. No irritation. And they’re quite smug, in a nice way, to see that I make mistakes when I’m tired, especially in elementary math. But adults have more trouble with my blunders. I can tell when I annoy them and I’m trying so hard to change when I really can’t.

I wonder how many times I have been irritated with neurodivergent people? Oh, it’s embarrassing to think about. I think I’ll sign off now so I can go meditate an apology to some people.

Thank you for listening, jules

The Day After I Meet with You

The problem with planning is that I never know what a day is going to bring. One day I’ll feel great and make plans and the next, I’m tossed back because I stayed too long at dinner with friends. I had a good time. I laughed and was the designated driver who didn’t drive home too slowly. I ate well, drank a half a beer, and even listened. My whole life, I was never very good at listening. I’m plracticing.

And today, I don’t feel up to it, to anything. My head hurts. My feet and hands thrum and shake whenever I try to reach for something. I drop things. My chest hurts and my oxygen is on the low side. It helps to hum with each breath, but I don’t have the wherewithal to make it pretty. Lights sparkle behind closed eyes, colors and patterns are a mandala of pain. I sit here, breathe in and out slowly the way they’ve taught me, metta meditation. I concentrate on the people I love who are grieving. There’s so much grief in the world. Later, I close my eyes while the TV is on something I care less about then let my mind drift to dreams I had of being halfway up the stairs when the carpet peeled back, and I had to cling to it as it snapped its tacks. I’m left clinging to a crumbling rail. That beautiful house, coming apart bit by bit.

I dream in metaphors.

Thank you for listening, jules

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

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

Fractured Inner Monologue

My inner monologue is broken. I never realized how much I loved hearing the voice in my head, especially the quiet morning voice that seemed to have so much wisdom. I can conjure other voices into my memory, my son’s and my husband’s, but this voice belongs to me even though it didn’t always sound like me. It seemed kinder and wiser than me too, so sometimes I attributed it to God’s voice. Who else could it belong to?

Later in the day, my inner monologue sounded like me. It would shift to my continued conversations with people I had spoken to, arguments I’d make, dialog to match scenes I imagined and the looks on the cats’ faces, and…

I forgot that Mike was home after all, and I just got pretty freaked out for a minute. You know, when your eyes dilate and you stop breathing for a moment to hear what’s happening in another room?

Okay, I’m going to go talk to a real person, not try to listen to a fractured voice in my head. I know he’s got plans for helping someone today, but he’s here now and I need to hear a coherent voice.

Thank you for listening, jules

The Intersection between School and Brain Injury Therapy

I’m almost finished with cognitive therapy. They call it speech therapy, I think, so that we’re not embarrassed about it as we negotiate with the world to get to our appointments. I’ve decided to go the direct route, not hiding that I have brain injury. What good does it do to hide that my hair doesn’t grow well? I could wear a wig, but you’d probably recognize that It’s a wig. In the same vein, what good does it do to work so hard to pretend there’s nothing wrong with my brain? No matter how hard I try, you’re still going to see my mistakes.

Last night, while watching Uncharted (I had to google the name of the movie), I said that there had to be some squashbuckling. in it because they found Magellan’s ships. I fixed it, said swashbuckling two or three times, when I realized my mistake, but it is part of my difficulty, my brain injury, recalling words. Here’s my list of difficult words so far.

There are some words I have trouble simply recalling as I speak:

• cognitive

• nursing home

• pernicious

• histoplasmosis

• cookies

• mayhem

• deadline

• navigator

• rivalry

• cadaver

• quarry hole

• swashbuckling

Oh, there are more, but those were the ones I wrote down the way I’m supposed to. Then, there’s the loss of spelling:

• medieval

• dependant

• annihilate

• dilemma

And so many more. I used to be really good at spelling.

The cool thing is that I get to start working the same way my students do to work around my shortcomings. The hard part is that I know I’m going to admit my shortcomings with my students and their parents instead of trying to hide them. Will they still want to have me tutor their children if I don’t have the levels of executive function I used to have? Maybe not. Or maybe they’ll watch me struggle alongside them and they’ll see the benefits to their children of learning that learning is a struggle worth pursuing. I guess it depends on the student and their parents.

I don’t organize as well as I used to. I forget how when I’m tired. I have trouble following directions. I have some challenge even reading when I have too much I need to read. I have lots of trouble organizing my writing projects. I have students with this difficulty so I’m going to make copies of the paperwork and workbook to teach them what I’m learning. I’m getting a headache just writing about this. It’s time to wrap up soon.

Together, my students and I are going to break large projects into smaller projects, plan how long it will take, organize our space to make it easier to concentrate, schedule tasks on a calendar, plan and implement breaks, set up people to report progress to, and celebrate the completion of our small steps as well as the large ones.

For now, I need to do this for my tutoring, plus for my writing if I’m ever going to finish another book. I really want to do both. Don’t I?

I’ll admit that it would be easy to slide into oblivion, painting in a memory care class and not worrying about the future. It would be easier to let go of my life and my dreams, but that’s not who I am, is it?

How are you going to make sure you finish what you started?

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

A Snippet of Morning Thoughts

Early some mornings, I now make the mistake of thinking about my life on the past tense. I know I shouldn’t, but some days start off that way anyway. Long-Covid is a bitch. It makes me dream I’m dying, of being suffocated, of being a disappointment to my friends. Life in its past-tense is new in my early morning fog of consciousness. Go ahead, try to control your own morning mind. Let me know what’s there, truly.

Thank you for listening, jules

What I Bought

I’ve been avoiding you because I can’t write much at one time. I used to be able to write three to five pages a day, but now sometimes a paragraph is too much. I’m okay with my 280 characters on Twitter, usually, but more is hard. Editing is really hard. Logic, organization, and spelling elude me. I had always believed you would require more of me than 280 characters.

Oh, who am I kidding? Some days a handful of words for a fractured poem is too much. Would that be enough for you?

Today, I’ve been lounging with earbuds in, listening to podcasts because I can doze and it’s easier not to lose my place. Yesterday, I took a short walk and I’m paying the price. This morning, the fatigue tested my resolve to keep trying. “Just keep swimming,” I hear Dorie say, but the water is thick and I am tired.

Still, I am here. Long Covid is the new polio. I keep trying to tell you about my experience with it. One of you might need to hear.

Yesterday, as I trudged along then sat at a picnic table, the sun was out, fishermen were out, kayakers, dogs and their people were out, even a mating pair of bald eagles were out. It was abundantly beautiful. I wrote: I wish I could sit in my kayak, fingers dangling in the water. I wish I could smell the algae of the lake the way I could as a kid with my nose just above the surface as I watched a bluegill kiss my knee.

I may be paying a price, but what a purchase.

Thank you for listening, jules

The Weight of the Universe

What’s the fucking point? I try to keep trying, but some days, I can’t see why I bother. I can’t see why I’d see another doctor. I can’t see why I’d try to keep doing the little things like running the dishwasher. Often, at the end of the day, I’ve squandered the day buying groceries, cooking a simple meal, often hockey pucks, and sludge, and I’m too tired to run the load of dishes let alone finish editing my book or taking a walk. Hell, sometimes I try to read a book and can’t understand it. I can’t see why I’m still breathing. Wouldn’t it be easier for me to drive off a road?

Some days, I feel my inner space. I think about planets and galaxies and curved space and time. I feel for the weight of the universe. I imagine the places in the world that are beautiful, without trash or crowds or the hazard of getting there. On other days, I’m just trying to find the words for putting away that food so it doesn’t turn green. This is fucking hard. I try not to complain every day, but I do. Mike reassures me he’s here with me every single day. Nick often comes out of his room and shows me a funny video and leans in for a hug.

I know I should keep trying, but it’s hard. I’ll admit it’s hard. I wonder at the point of trying.

I wanted to go swimming, but I’m too tired to get there…

…or to get home afterward. I want to sit in the sun, but when I get chilled, I shiver for hours afterward. I want to talk to friends but it’s exhausting to stay focused for too long. And they always stay too long if they even come to see me.

I wake up in the morning, bleary, and things I want to do pop into my mind, this and this and this. It’s going to be a good day. Then, I realize I’ll be lucky to do just this one thing. Grief is forgotten in the night. And how important is that one thing anyway? How important is trying?

Until I find out, I’m living for the moments Mike reaches over and silently touches my elbow. I’m living for Nick handing me his phone with another video of a silly cat.

I’m still trying to make a simple meal, despite the weight of the universe, or maybe because of it.

Thank you for listening, jules

Spend

Yesterday, I felt like I had a small but precious life and I was grateful to have it. I promised myself I’d keep trying no matter how hard things were. I believed that even though all I managed to do was make pizza, my life was worth something. I kept thinking of the infinite moments between seconds. I kept thinking of the infinitely small and the vastness I could find in my imagination. It was intricate and stretched through time and space. It examined the song of a nebula. Yesterday, I wondered if infinitely small is the same infinite as infinitely big.

Today, I just feel like I can’t do anything, so my life is useless. I’m going to go sit upstairs on my couch and read a book all day or worse, watch TV. What good is reading a book if I don’t live life differently because it mattered? What’s the value in a life of watching TV? [Laughtrack.] In ten minutes, it won’t matter what I wrote on social media while I was watching TV. [Laughtrack.] This morning, I got an email that my domain would be renewed in ten days if I didn’t email back saying I didn’t want it. [Laughtrack.] I get ten emails a day from people and companies that want me to spend my money on them. [Laughtrack.] TV interrupts itself to remind me to spend my money on them. [Laughtrack.] Or maybe it’s the other way around that TV interrupts its plea for me to spend my money on them to show me something they think will hold me on that same frequency. [Laughtrack.] The only thing in my life that seems to matter is that I can still spend money. [Laughtrack.]

Thank you for listening, jules

[Laughtrack.]

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

Wordless Prayers

Hi.

It’s been a while. I don’t know if you’re even here anymore because I’ve been gone so long.

I’ve been meditating. Have you ever meditated?

<crickets>

Right. I’ve forgotten that I’ve been staring into space and you might have floated away.

At night, I listen to the Guide to Meditation on Netflix. Oh, there are pictures evolving on the screen, but instead, I slide under the covers and close my eyes. There’s a beauty to having a CPAP. I can tuck all the way under and still breathe fresh air. I like when I can open and close my eyes without seeing any change. I listen to this series over and over under the covers. It’s simple. A disembodied voice tells me I can’t control my mind, but I can watch that thought flow by and refocus on my breath. Instead, I focus on colors. See, when I’ve been in the dark for long enough, I see swirling colors. Do you?

<crickets again>

Well, I like this feature of my brain. I’ve read that it’s not uncommon for the brain to be active in the occipital lobe when it doesn’t get visual signals.

When I meditate, it goes to a dark purple swirl. When I have a migraine, it crackles with a black and white herringbone pattern. Sometimes, when I’m trying to settle my breathing, I see red and orange.

So, imagine me there, under the covers, breathing fresh air through my CPAP tube, trying to fall asleep or at least meditate into some rest.

I think about the people that I love that need prayers. There’s a big list these days from all over my circle. I won’t go into detail. These are not my stories to tell. So, imagine me lying there, the cat sitting on my feet, and thinking about the people that I love. Somehow, I imagine these colors of mine swirling around them, blanketing them in pale blue comfort, healing them in a leaf-dappled green, drawing gold and silver threads to connect them with their families and friends. Oh, there are words flowing through my mind, always words, but I hear them and let them flow past in that unending river and I try to focus on the colors instead.

How do you pray? Do you even call it praying? Do you send healing thoughts, healing light?

<crickets even still>

I do all three along with this meditative swirl of color and imagination. It doesn’t matter what I call it. I could even call it quantum physics.

I’ve heard people say they don’t know how to pray. I always listen to people praying out loud and think I could never do that. I even bought a book once to learn how to say a blessing. I didn’t read it. Once, my grandma asked me to say the blessing and I choked completely and couldn’t think of a single word before I asked someone else to please do it.

And yet, I can easily imagine a comforting light wrapping around someone I love. Or I can swirl some colors around my own pain. I can express all the emotions I have in that process without naming it or judging the feeling. It’s just a color, green, blue, red, yellow, brown, orange, or purple.

Praying can be that simple.

Thank you for listening, jules

Whistling into the Wind

I was raised to be entertaining and to be cheerful.

I’m sick. I’m lonely. Some days, it’s hard to keep a smile on my face.

Oh, and I didn’t tell you, but Nick had mild symptoms last Friday, so we scheduled him for a test. We were worried because of his generally delicate lungs but by Saturday, he was fine. yet his test came out positive. He has Covid!

Now, I’m quarantined. I have a sore throat, possibly because I can’t buy distilled water for my CPAP for some reason, but I have a sore throat. I can’t go anywhere for two weeks even if my test comes out negative.

And I feel like shit, achy, fatigued, and headachy, all the Covid symptoms. I’ve felt this way for the last year and a half for the most part, except for the sore throat.

I’m sad. I’m lonely. I’m so very tired, but I was raised to entertain people and to keep a cheerful face on. It’s hard to show people how hard it is for me right now, so I’m quietly whistling into the hurricane and hoping you can still hear me.

Thank you for listening, jules