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

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

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

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