Don’t Trust Your Senses

My senses have changed. Because of my shakiness, any vibration from noise or even music causes some nausea even when I sing. All sounds overlap with the roar of tinnitus, especially when I’ve exerted myself mildly. I can’t trust my sense of being upright with my eyes closed and I have a sense of shifting, even of dropping down like turbulence on a plane. Taste and smell are muted and sometimes altered. I might smell something burning or be barely able smell my coffee. My vision shudders and narrows when I’ve done something as simple as making a meal and my eyes go crossed in the evening.

Since my specialists tell me their tests show I’m normal, I now have to wonder if I am to ignore each of the ways my brain has of interpreting my environment and my sense of well-being. I spent my first sixty years believing all those sensory experiences were a signal for caution.

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.

Myopia

I suspect we’re not going to address the issues of sustainable life on Earth. Even though scientists have narrowed it down to a few different issues that keep us alive, carbon emissions, the water table, plastic, ocean acidification, deforestation, and I don’t remember the last ones, we can’t seem to listen with our whole selves and make changes. I really can’t remember the last ones, but it’s ironic that I can’t, isn’t it?

We just spent a year holed up in our houses, most of us, and the minute our vaccinations became effective, we resumed pushing, moving, consuming, and chattering as if nothing happened.

Remember the small joy we had when the air became cleaner in cities around the world? Remember when animals we thought were extinct roamed the streets freely? Remember when we looked in the mirror for a long hour in the midst of the fear and said we’d do better, we’d reduce our plastic consumption, we’d work more often from home, we’d plant a tree, if this scourge ever ended.

You didn’t?

I’d like to think I did. I mourned that I couldn’t use my own grocery bags. Plastic piled bags piled up in the laundry room. When Amazon delivered, there were ten or more plastic bags that we collected, or for those that sealed over onto themselves, just threw into the trash.

We promised, didn’t we?

At this point, we’re not just trying to save the planet, we need to save ourselves. We’re trying to save all life on this planet.

I sit in a well-lit room with unnecessary candles burning, and the computer is on, to tell you this.

The Keystone XL pipeline has been canceled. Bill McKibben said that if it went through, it could be the tipping point that put us over the edge into the irreversible. Poor Bill McKibben. He’s been shouting at us into the void for decades. I remember when his books were about the joy he found in nature.

Already, we’re in the irreversible in some areas, but scientists think we can science the shit out of it if we start working now.

Now.

We’re not working on it now. The projections I read about are that we’re going to cut our carbon emissions in half by 2030. Isn’t that too late? Does that even come close to what will save some of us?

When I was still watching the death toll rise, I was thinking that at least the Earth was breathing a little easier while we were cloistered, but did any of the companies change their practices to become more sustainable during all that? Did Amazon put 10% of their profits into paying their employees more fairly and another 5% into sustainable practices? Did people vow to work from home a couple days every week when things opened up? Did I choose to eat more locally?

No, I ate whatever Amazon could deliver to me. And if I couldn’t get something, like the dear toilet paper, from them, we ordered it from Walmart or Target, or—gasp—from a furtive trip to Albertsons.

While we watched people lick windows, call the cops on each other, and rage in the streets during the pandemic, we didn’t make any lasting changes to our predicament. There are too many of us and we’re not using Earth’s resources as if they have a limit. But we couldn’t really see or hear any of the warning cries more clearly as we sat on our couches and watched the year unfold.

We are in the middle of a mass extinction event.

Insect numbers are dwindling. Bee populations are collapsing.

Australia, California, and Washington state are burning.

Coral reefs are dying.

Storms are more intense.

Heat waves are killing people.

The polar ice caps are melting and the polar bears swim around and around in circles looking for a place to rest.

And yet, we are myopic.

Why can’t we open our eyes and start demanding that corporations and political leaders and each one of us make changes? Why can’t I make changes?

Seriously!

The Cost of Words

And that hour I just spent at the computer, sitting upright in a chair, pouring energy into words that tell stories that no one will read…

That hour just cost me the ability to eat my leftover lunch of jalapeño chicken on angel hair pasta

with steady hands

that wouldn’t spill. I wear the evidence on my shirt.

Thank you for listening, jules

Labeled

Yesterday, as Mike stood poised at the bannister to go downstairs and out the door for a walk, he said something as he said goodbye. I don’t remember what he said. I don’t remember what we were talking about. All I remember is that he used one word to refer to me, disabled.

Disabled.

I spent much of the fall mourning my ability. I have so much less energy that when people want to talk for very long, I have to take it into account in what energy I have to spend. It’s why I haven’t been here. It takes a good part of my daily energy. My students take up most of my energy on the days I tutor them. I work with them seven hours a week. Seven. I even struggle more when I try to convince doctors that something is wrong. It hasn’t been going well with most of my doctors.

But I got used to the idea that I’m changed, diminished. I learned not to expect much of the rest of my life. I grieved. I went through all of the stages of grief. I tried to catch people up who lagged behind that process. My sister finally listened to me. My friends who said it was just stress without really listening finally managed to see who I am now. I’ve lost friends. I thought I’d made peace with that.

I can feel the shaking coming on, so I don’t have much time right now. Plus, I need to have enough energy for one student today. I need to figure out what we’re going to have for dinner. Can I even make dinner? That’s not always a given.

Mike said I was disabled. Disabled.

It hit me hard yesterday. I’m disabled.

I guess I’m not done grieving for my life.

Thank you for listening, jules

Simplifying

Hi there. I’m so much quieter than I used to be. Sometimes, I join in the chatter when I feel a bit better. I twitter sometimes. I twittered on Saturday with the joy of Joe Biden’s and Kamala Harris’s election. What a fucking relief.

Some part of me believed all my symptoms would go away if it happened, but I lie here to attest that isn’t true. Damage has been done.

I keep wanting to get better but I can’t wish it to be so.

Our culture is a wish-it-better culture.

I used to have a lot of friends. No more. Yet, when I begin to count my true friends, they are enough. These are people who sent me silly cat videos, who wrote snarky or sweet letters, who actually asked how I was doing, who didn’t negate me when I said how hard it was or what was happening. Yes, even family members told me it wasn’t happening.

I used to be active and involved. I’ve quit almost everything. I still work about half the time I normally would. I’m in a tiny but vibrant book club. We just finished discussing ‘So You Want to Talk About Race.’ And I still try to meet with my writer friend even though I’m barely writing. I try to walk with another friend, but I can’t usually make it.

I’m only half in and half out of the church I used to be dedicated to. The minister never called to ask how I was doing. I believed I was dying and my friend told him and he didn’t call. So I don’t know what to do. I didn’t make it to the prayers list. Were the prayers a popularity contest anyway? Churches are only human after all. I still haven’t decided about church. It’s been hard to feel joy in my soul. Do you have to feel joyful to be a good Christian? Do you have to be a cheerful worker bee? I was a worker bee for twenty years there. Maybe I wasn’t cheerful enough.

I quit my quilting group that I’d been in for twenty years too. They would have asked how I was sometime in seven months if they’d cared, right? I was the comic relief. It’s not a real relationship if all you’re doing is entertaining, right?

I quit my open-mic group. I didn’t mind that I was the comic relief there, but the guy who led it really didn’t want to hear alternate ideas, didn’t want to talk about diversity. After I read from my almost-finished book, he told me I wrote the wrong book. Seriously, I was on the way out before the awkwardness of zoom meetings.

I’m cleaning house. Simplifying. I just wish I had the strength to get rid of physical junk too. It seems like those parts would go together. Alas, my house is still full of junk. At least I have plenty of books.

Thank you for listening, jules

It Kills Me

I tried to finish. I did.

I have a book about a kitten. It only needs a bit of editing. I love this book about how my terrified little kitten found a way to live through it and how I knew exactly how he felt as he ran and hid.

I wrote another book about how Mike and I fell in love, how so much of who I became began with him on a lake or river in a canoe. I wrote our love story.

I wrote almost the whole story about my dad, what he taught me and how he died. I never finished because I didn’t know how to end that book. It hurt but it was a balm to write about him.

I had other stories, something I wrote for Nick before Mike made me realize he’d never read it. It was my funniest book.

There were others, characters who I loved, one character who terrified me. He was too real. There was an alien. What will happen to her?

I tried to finish, I tried, but so many nights I lie awake, surrounded by the notebooks, the binders, and reams of stories printed on green paper. I lie in the dark and realize that when I die, they’ll turn to dust as I do.

I’ll die and no one will ever read them. I regret not finishing. I wish I could let it go, but I can’t. No one cares if I wrote.

I don’t know why it matters, but it kills me that no one will ever read those words.

Thank you for listening, jules

Forty-Eight Minutes

Today, Mike, Nick, and I went to the store to get flu shots. It was an outing. I needed an outing, but I had to get Nick and Mike out as quickly as I could. They’re susceptible. I work to protect them.

I had fun until the part when they were finished and I still needed to pick up groceries.

Shopping is exhausting and I struggle to push the cart. Plus, I try hard to avoid the contact with people. At this point, I must be in a high risk category if I catch COVID myself. Already breathless and with chest pain, I must be at risk.

Knowing that the guys were waiting in the car, I stopped at the deli to get some spicy chicken tenders for salads. It figured that my deli guy, who I usually have trouble getting to smile, wanted to talk today. It figured.

But I let him talk. He fell into a story then began to tell me about how he’d had a heart attack. I’d heard he’d been out. I’d even prayed for him last winter because they’d said he was so critical. He’d come back and been so quiet. Today he decided to pause and tell me how he’d fallen to the floor of a restaurant and he laid there for forty-eight minutes without a pulse. He said a doctor recommended that his brother pull the plug after he’d fallen into a coma for three weeks. I stood across the display case trying to hold back tears as he spoke. I stared into his blue eyes.

When he awoke, a young doctor told him it was a miracle. Then, a more experienced doctor spoke up and said it wasn’t a miracle, but it was because of the man who gave him CPR that whole forty-eight minutes, the guy who broke four of my deli guy’s ribs, the guy who left bruises all over his chest. That was why he was still alive.

“You must have something else you need to do,” I said. “You should get to doing it.”

He nodded. We were quiet for a moment.

“But make sure you don’t finish it too fast,” I said.

We had to stop talking then. Another customer had slipped in line behind me.

I always liked saying that to people who told me their near-death experiences, that they had a purpose in the universe. I want to believe it. I used to believe it, that if a person lived through an event, they must have something else they needed to finish.

I had a rough summer this year. I thought a lot about death this summer. I lived through it. I did. I’m doing a little bit better now, a little bit.

But I’m not so certain about my hopeful theory any more. I wish I believed I have something else I need to accomplish to set things right. I wish I did.

I’m not so sure about it now. Maybe it’s just a bunch of bullshit.

Thank you for listening, jules

Lying on the Couch, Thinking

After reading Rilke’s second elegy—

Your angels have become so benign now, but weren’t angels supposed to be terrible in your sight, birds of the soul, the ones that blocked your easy path through parkland and pushed you into wilderness? Did Mary wish for the shame of a virgin birth? Did she wish to see her kind son, at the end, a dead man walking?

Can an angel be a transparency, making a simple scene, your home or a mountain hovering over your walk, seem altered, full of unspeakable beauty, choking you? Or unspeakable horror, choking you?

Can an angel make you see how you will soon evaporate like mist over a warm river on a cool morning? Can an angel make you smell the ember of your soul, then leave you standing in the bland dust of afternoon, feeling its vacancy as it leaves your heart? Can you really feel that slight warmth of an angel’s soul then coolness when it leaves the bed of your dreams every morning? Can you briefly taste infinity on your tongue in the divinity that fills the June strawberry you just bit into as you stand in your kitchen staring out the window at your eternal trees? When you look into a dog’s eyes, can you feel the angel in his soul? And most of the time, the rush within moments of doing, the angel-less time, you barely even see his features in your push toward getting work done. Are your eyes even open?

Maybe angels exist in the air, in your love’s breath, or in the musk of shame, hovering over truth whichever it is in that moment. What is rapture? The essence of what? You reach for abundance, the infinite, but in an angel’s absence, find that truth has vanished.

Only dust and emptiness fill your mouth.

No Courage to Yell

The last time I was here in crabby mode was April 6th. There is no way I’ve been continuously cheerful since April 6th.

I’ll tell you why I haven’t been here since April 6th: I’ve been so damned crabby that I wasn’t funny any more. I stuck with chatty that long and I know that my crabby state spilled over and flavored it, maybe even poisoned it. Let me know if I poisoned what is supposed to be a cheerful rant.

Friends, I believed I was dying more than one day in a row over the past months. I wanted to make it funny, but I felt pretty isolated and misunderstood because so many casually calling and texting friends couldn’t—or were afraid to—let me acknowledge my own death.

Mike and Nick let me talk about death, about how terrifying and imminent it felt, a presence that hovered. It was a comforting realization that I was isolated with the two people in the world who loved me best. It was a comfort they listened and hugged me whenever I wanted.

The sad thing is that, now that I’m further off that precipice, some of my relationships are still in disrepair. Some didn’t make it. I haven’t even told some of them of that change.

So, yeah, I’m still crabby sometimes.

But, you know what?

I’m redefining joy. I learned that joy can be as slight as looking for the branches on my companion Western red cedar that waved in a breeze. Joy was the field of various greens that blocked my view of the sky. Joy was reclining on the same couch with Mike as he played his video game. Joy was burying my fingers in a cat’s fur.

So, no, I wasn’t always chatty since April 6th, but I didn’t have the strength or the courage to yell to you about it.

I’m so sorry if you thought I was dead. I’m not dead yet. I’m just hanging out on my recliner.

Thank you for listening, jules

Slowing Time

And now, I can’t work either. Oh, I know I was only working with one student a day, but I was able to do on little thing every day. One thing.

Not now. I don’t feel well enough to sit upright for an hour. I’m waiting for my angiogram on Thursday and I’m reduced to watching my guys take care of things around me while I lie in one lounging chair or another. They’re like hummingbirds, Mike and Nick, moving faster than I can comprehend. Right now I’m out on the deck looking at the way the Western red cedar waves its branches in a slight breeze and thinking that my phone shouldn’t be so heavy. My tree is beautiful and slow but I can almost always see its branches wave. There’s a soothing sound it makes too.

Mike’s grilling steaks and baking potatoes. They smell perfect right now, but I don’t feel all that hungry.

I feel the way I used to feel after a hundred yard dash, that putting food on it would be a mistake until I caught my breath. Don’t worry. I’m not getting thin or anything. I’m eating enough, especially with steak and potatoes on the menu.

I wonder if being sick is for slowing time and feeling the weight of small things. I wonder if I wasn’t intended to watch the breeze in the branches and to listen to its soughing song.

Pray for me, if you will.

Thank you for listening, jules

Having to Sleep on It

I don’t know how to do this, to get my affairs in order. I don’t know how to resolve that argument with Mike about whether or not I’m worth the money to buy me something I’ve needed for a while.

I don’t know how to resolve the problem I have of getting my sister, my brother, and my friends to listen to me when I say this is real, this thing that’s wrong with me, and I’m scared. I’ve needed someone to listen to me like this since I was nine and broke a vertebra. No one noticed then either. I needed someone to listen to me. I always have. Why else would I be here?

I don’t know how to reach out to my friends to ask for prayers. I’m afraid enough that I want prayers but I’m not that person who puts my medical instability on social media to ask for support or makes an announcement out of the blue during a zoom meeting I don’t feel up to joining in the first place. I’m too sick to talk for long on the phone, but no one calls. Letters are lovely and quaint yet people don’t think to send them. People automatically expect me to get better after a couple of weeks as if I had a bad cold. This is nothing like a cold. I’m not getting better.

The only new development is that I’m finally in a position that doctors see evidence of how I feel on their tests. I’m having an angiogram next Thursday. I’m not confident I’ll live that long. I don’t know why I feel this way. I wish I didn’t, but I do. I feel so much pressure in my chest especially when I lie down. At night I dream I’m dying.

I want that chance to tell my sister, my brother, and my friends that I love them, but I don’t know how to get past this awful feeling of being neglected first. Maybe I don’t have to get past it. Maybe my message is that I feel neglected, but I love them very much. I want my mother to call me and tell me I matter, but maybe I’ll have to try to call her instead. Everything is so hard to do, but maybe that’s my last big lesson.

Mike came to kiss me goodnight. I just now resolved that old argument with him. He said he loves me. I feel that. He has loved me forever. I don’t have to sleep on that old argument tonight. But will you pray for me anyway? Or something like that? Please?

Thank you for listening, jules

What is Inside My Heart?

I’m in the middle of a scare. I have to get a angioplasty next week. I could either have a blockage or some inflammation in my heart from autoimmune disease. I have a lot of the post-COVID symptoms. It is scary. Somehow though, six and a half hours after I got the news, I feel less afraid because at least there’s a reason I feel this way and my cardiologist wants to look inside my heart.
What will he find there?
I’ve been writing down the important stuff in my notebook. It’s there under today’s date, what’s in my heart. That’s what I needed to do because I was scared. You can find it there if something happens to me.

Next week, my cardiologist will look inside my heart and hear that I loved Nick so much that without him, I wondered if I could continue to breathe. All those nights up with him when he had pneumonia, even the fifteenth time through Star Wars Episode VIII with that pallid love affair between Anakin and Padme were worth it because Nick had finally, finally after days of sleeplessness and struggling to breathe, Nick had finally fallen asleep. Nick taught me the meaning of oxygen.
My cardiologist will look inside my heart and find Mike’s love grown into its walls the way a trees roots will clutch a stone or grow over a curb. He’ll see our 28th anniversary and all the way back through to our honeymoon in Maine when we spent our last night on the Alagash waterway zipped into our double sleeping bag in 29 degree weather with our sandy dog Indiana tucked between us despite the fact that she smelled of dead fish she’d rolled in earlier. He will find all my dogs, cats, and even hamsters souls tucked in there where it’s warm. He will find that a lifetime with Mike does not feel like enough in my heart. Yet it has been just a moment.
My cardiologist will feel the curiosity that flows in my blood, the stuff of learning about lichen, electricity in a heartbeat, astrophysics, and the joy of Fibonacci numbers popping up in nature. The mysteries of the Universe lie along the waterways of my blood.
My cardiologist will hear the echoes of laughter of my friends in the big hollow spaces in my heart. He will find room for change in my demand for social justice and ethics in DC. It’s right there in the hollows.

And I really want my cardiologist to find the little note of hope that he can patch some duct tape over a worn spot in my left ventricle and I can go home to be with my breath, my joy, my love, my curiosity, and my laughter for a few more years to come.

Please pray for me. It’s still a little scary.
Thank you for listening, jules

I Can’t Breathe

I can’t breathe. That’s what George Floyd said. I can’t breathe. That’s what Black Lives Matter protesters say. I can’t breathe. It’s what COVID-19 patients say.
I can’t breathe either. I haven’t been here much for a while. I tried and have a bunch of blank drafts to show for it, but it turns out that I was too exhausted, in part, because I am not getting enough oxygen. I get out of breath and have a high heart rate just making toast.

Yes, I’m working working with doctors to figure it out, but it turns out that the ones who would help me, the pulmonologists, are pretty busy with people who are on ventilators right now. So I’m on COPD medicine until they get me in to scan my lungs.
It’s exhausting. Everything is exhausting. Please send good thoughts.
Thank you for listening, Jules

Here I Am, Speaking Instead of Listening

I find it hard to write about how much our society would improve if we all took up the Black Lives Matter protest.

I’m going to make mistakes. I have made almost every mistake in the book regarding ways I could be insensitive.

But a friend of mine said I should keep trying anyway. In fact, she is someone who should be the speaker and not me because she’s learned more. Plus, she is nicer than I am. Why do I have to be the one who’s always shouting into the wind? I’m not an expert. More than once, I’ve asked, ‘Why me?’

Because I was born that way. I’m like a bird that only stops singing when it’s asleep. I make noise. It annoys some people and other people like that about me. Fundamentally, I can’t change who I am. I talk. I write. I sing when I’m trying to make myself be quiet.

Why me?

Because, though I don’t know everything, I feel better when I write it out to try to understand it more thoroughly. I am not that person who sits down at the keyboard because she has something to say. I’m that person who, through the process of writing around and around a subject, begins to see it more clearly.

Why me?

Because I know it’s the right thing to do to try. I don’t want to be among the silent ones who became complicit because she didn’t speak out. I don’t like being hated, and there is so much hate out there. I’ve felt it, especially when I spoke out in social media. But if I don’t speak out, I will be complicit.

So, I have to speak out, to write about what I’m learning, what I’m hearing oppressed people say, what I think about where we are in this country right now as long as the light still shines on it.

Here’s what I’m learning:

I know that racism still exists, but I didn’t understand my part in it until I started reading authors who’ve experienced it. My job, though I’m going to babble on, is to keep reading and to listen. So I’m listening.

And that is hard, I’m telling you. How many videos showing abuse, overt racism, and murder can I watch before I turn it off to recover? Yet, what I’ve learned is that people of color can’t turn it off. They have to go to sleep at night knowing that it could be them tomorrow, or worse their children. Yesterday, Mike watched a video of a six-year-old black girl being arrested in her school. I didn’t see the video, but my heart broke listening to her beg. She was a baby, and she was arrested for acting out at school. I didn’t see what happened to cause her to throw a tantrum, but I’d guarantee she deserved to be angry in that moment. The school resource officer called in for backup.

What the fuck?

I thought that a school resource officer in an elementary school was there to protect the children from dangerous people trying to get in. I didn’t realize the children would have to be protected from them.

It would be so easy to stop watching, to go back into my protected shell and try to ignore the pleas of people of color to be heard.

There it is—my white privilege.

So, what does a mother of color do when she can’t take in anymore? I know she can’t turn off her fear, but can she back away from the onslaught of violence caught on video, from the hate that spills onto social media? She has to live with the rest.

I just learned about swatting last week. Did you know that people hoping for violence ‘make prank calls to emergency services in an attempt to dispatch a large number of armed police officers’ to the house of a person of color? How is that a prank? That’s vicious. It’s potentially deadly.

I’m learning so much these days, and it’s hard work.

Poor baby, right?

There’s my white privilege again.

I spent hours during the beginning of the pandemic reading about statistics, about what worked and what didn’t, about the PPE problem and doctors and nurses wearing garbage bags. I felt it was critical to keep looking at the wave of information that kept crashing over my head. Why was the Federal government holding back tests? Why were people of color more likely to die? What were the latest rates of new cases in areas with large groups of people together? What treatments worked? How were doctors and nurses feeling when their beds filled up and so many people died in one day?

And now, I am looking at racism in the same way. Don’t look away even though the next wave is crashing onto the shoreline. At what point will we, the ones who have the privilege to do so, get exhausted and turn to other news? There is always some horrific news, isn’t there?

Syrian refugees, food deserts, healthcare and funding deficits on reservations, botched aid to Puerto Rico, missing indigenous women, refugee children in cages—has anyone released the children from their cages yet?—poisoned water in Flint, Michigan, and racism inherent in police departments.

It’s all about human rights, isn’t it?

Even years ago, when I fought for equal rights, equal pay, and the right not to be groped by a coworker in an elevator, I fought for human rights.

For me, then a young female in the predominantly male engineering community, it was about survival. How could I dress to prevent the belief that I was ‘asking for it?’ Could I afford to have a drink when people would assume that I was drunk so I was ‘asking for it?’ Could I laugh at the dirty jokes while rejecting the filthy propositions in an attempt to sidestep the problem and not appear to be ‘too sensitive or too angry’ all the time? I just wanted to be able to do my job, yet I walked a fucking tightrope in some of the companies I worked for and, yes, my life was threatened more than once. Those people who threatened me were never punished. It was exhausting and if I wanted to keep my job, I swallowed so much shit.

So, at least in a way, I know a little about how racism might feel. Yet, I have only felt threatened by police three times in my life. Other police officers changed my tire, unlocked my car door, and stood in awe with me on a country road while a herd of deer casually crossed in front of us. The videos I’ve been watching don’t make me think of the protect-and-serve mantra I was raised to believe in.

‘Those were just a few bad apples,’ people said of the first few videos and I believed them because my experience was so vastly different. But it’s more than that. This volume of police who are not held responsible for their violent actions can’t be just a few bad apples. I can’t say that there aren’t some police officers who still model the ‘protect and serve’ motto, but we need to make some serious changes in policing. We need to make them now before anyone else dies.

Too late. Somebody else died last night, didn’t they?

Yet, I feel resistant to discount my own experiences with police officers who were kind. I hate to admit it, but I do.

And that’s the problem with identifying white privilege.

Police seem to love protecting white women. I remember the times when I was stopped by a police officer but, even though it chaffed to do it, I put on the charm, tried to look innocent and a little vacuous, and they totally loved it. I shouldn’t have had to do that to keep from getting a ticket for going two miles over the speed limit, but I wore the mask of a damsel in distress and it usually worked. The flip side of that coin is that black men are seen as villains, outlaws, beasts, scoundrels, felons, convicts, hoodlums, thugs.

Look at the synonym for villain and picture the race of the face that pops to mind for each of the slightly different words.

Crap. I’m part of the problem. Villian brought to mind that cartoon who looked Russian, you know, the one with the damsel in distress tied to the railroad tracks. But too many of my villain synonyms were black men.

So, I’m a mixed bag here. I may argue for human rights, for police to be reformed and demilitarized so that people of color are safe, for people to be treated with more respect at our borders and within them…

…but there’s still privilege and racism that exists in my own mind. I’m working to discover it.

That’s why I wrote today when I should be listening instead.

Thank you for listening, jules

Sleep, Wake, Rinse, Repeat

Insomnia sucks. You finally have all the time in the world to

write that novel

vacuum the attic

reorganize cabinets

read War and Peace

watch a whole season of Madame Secretary

…and instead, you stare into the inner space behind your eyelids, worry-cycle through all the ways you and your family is going to suffer then die, and finally put on an old movie that you’ve watched a hundred times that you chose mostly for its even sound level and length of play. If you had the energy to sit upright at the computer to edit, you’d manage to delete the last two weeks of work before you realized you’d better stop. You did this once, and every effort you made dig yourself out of that that techno-bumbling state delivered you further into file damage, computer viruses, and deletion. Even if you had the wherewithal to clean the house, you’d have to stay quiet for those rat bastards in the other rooms who might actually have the ability to sleep at night. No, they’re not really rat bastards, but how dare they mock you unconsciously as they twitch with blessed REM dreams.

Mike and I seem to take turns sleeping well, as if there’s some cosmic seesaw in which only one of us is allowed respite on any particular night. Or the seesaw’s completely cracked in half and neither of us sleep. There have been too many nights like that lately. I blame the pandemic and social unrest. I still blame trump. Does he really have to ruin everything? There are so many nights when Mike and I are both up worrying about it all and trying to get enough sleep so that we can function the next day.

And that’s not the cozy kind of two-people-not-sleeping because we both know if there’s any chance at all that one of us will sleep, it’s if we don’t talk to, worry with, or otherwise touch the other person in case they’re closer to the divine dream-state than we are. So, we’ve developed solitary night-time habits, lonely habits.

I’m up now, really up, but my jaw pops each time I open my mouth to sip coffee and it’ll take a while to work loose. I don’t think I grind my teeth so much as clench in my sleep. I wake up with my fists sore too. I was too tired to use the espresso machine, so I reverted to the instant coffee that takes minimal effort and tastes like it too. I haven’t made a mocha in at least two months.

Mike, taking a break from working at home, stands in the kitchen and keeps saying, “Back to bed,” in a sympathetic tone and I try to remember what I taught Nick when he was little: We don’t hit.

There is such a thing as psychosis brought on by the lack of sleep. I’m not quite there, because I do eventually get enough sleep to feel a little cheerful, but I can feel the Jekyll and Hyde cycle of being short on sleep in the wee hours and almost rested during the day. Combine that with the fact that I’m not really seeing any of my friends until there’s a vaccine and I’m pretty weird these days. I’ve been writing letters to those friends but I’m wondering if I sound more and more strange with every word I send.

So, yeah, my life consists of insomnia, working, cleaning, trying to grow a garden—that’s a whole new level of failure I’ll tell you about later—decontaminating groceries, cooking, trying to appear normal on camera, watching the news, and insomnia all over again every single fucking night. Welcome to my groundhog day.

Thank you for listening, jules

Unprepared

Apparently, I’m not done being ridiculous. I stumbled into being a moderator for a Black Lives Matter ally book club. I hadn’t intended to start a book club let alone try to lead one to support Black Lives Matter, an area in which I consistently make the very mistakes that liberals make that promote racism. I will probably tell you a whole bunch of embarrassing stories about my journey but today is one more good example.

This week, I struggled to figure out how I could stay at home to keep my family protected against the pandemic and still become an ally. I sent a letter to my local police department. I haven’t gotten a response, but that’s a great opportunity to be lame, not to follow up if I don’t get a response. Then, I drove through the Black Lives Matter protest in my area and beeped my horn a bunch of times and cheered people. I drove back and forth a few more times, then went home with my banners still in my windows. I can’t tell you how ridiculous I felt when I realized that I probably honked and shouted over a black leader who was trying to make a point and deserved to be heard.

Then, I posted that I wanted to discuss Ijeoma Oluo’s book So You Want to Talk About Race and a bunch of people responded, people I know who are up on social justice, and me. Anyway, I began to organize. I bought a copy of her book because when I read it before, I’d checked it out from the library. It was time for me to have a copy, to make notes, and to send monetary support a black author I liked. I was excited that it was scheduled to arrive in two days. That would be today in the afternoon! Then, a friend who was joining the group asked me if I could pick up another copy while I was there.

Where? I was shopping online!

So, I ordered her a copy, sent it to her house. Even that said it should arrive on Sunday in the afternoon. I was already a great moderator, wasn’t I?

Yesterday, I sat down on my computer and figured out all the email addresses of people who didn’t respond when I asked for email so I could send them a Zoom link. I looked at updating to pay for a longer session, but figured we could squeeze everything into the free forty minutes. Then, I figured out why my computer wouldn’t let me set up a recurring meeting and what that blip was that stopped me regarding the password. Mike helped me through that. I interrupted him working for his actual job to help me crawl out of the technical hole I’d dug for myself.

Five minutes after I sent the email, someone emailed me to say they had a paid subscription and we could use that if I wanted. I did want, but I was worried that this woman was notoriously late. I’d have to eat it and say yes for the sake of the time. We would probably need that time. It was just one more way I would be ridiculous as the moderator of this group.

And speaking of ridiculous, I’m the person who talks too much, who forgets herself and interrupts. Who on earth thought I would make a great moderator?

I did. Or rather, I didn’t think, but I leaped in without thinking.

This afternoon, I checked Amazon to see if my book was here yet. I was too lazy to walk around to all the places they’ve delivered packages in the past.

Yup. It was delivered. I walked around the house to all the places they’ve delivered packages in the past. Nothing.

I checked again. The delivered copy was my friend’s copy that was delivered to her house. Check. I’m helping.

My copy, however, would be delivered tomorrow evening.

Tomorrow? How could I moderate a book club about a book that I didn’t even have in my hot little hands? How could I remember what I’d read more than a year and a half ago? Why had the Universe plotted to let my friend’s copy arrive in time and mine a day too late?

Because I am ridiculous. Even Amazon wishes it to be so.

Thank you for listening, jules

A Fist Full of Hope

Hi there. I’m sorry I’ve been gone. I’ve been here, but I haven’t been able to find words. I’ve had so much trouble with everything that’s happening in this world. I’ve felt so hopeless. I should have written anyway. I should have tried. I should have sent you this:

The Hope Stone

I found this in the woods as I tried to walk Teddy a couple days ago. Remember Teddy? But walking was hard because I had fallen, strained my ankle, and split open my knee. Walking was hard because people weren’t wearing masks and I was afraid they would come too close. Walking upright was hard because I’d watched a police officer kill a black man, George Floyd, on video. Everything was hard, except this fist-full of hope some little kid had left for me in a knothole of a Douglas fir that had stood for at least a couple hundred years before this awful era.

Did you see in The Hope Stone the way the blue dominated, and the yellow, the hope, couldn’t be the center of the flower any more. I understood the message, that hope was still there, but it had been pushed aside for a bit. I somehow felt the softness of the little fists that had painted The Hope Stone and used it to fill a hole at eye level where I could find it.

I don’t get to hold small hands these days, but I remember how soft the backs of their palms are. I remember how the knuckles haven’t yet outgrown their dimples. I could imagine pink transparent nails with just a crescent of white where they grew as the creator of The Hope Stone reached up and placed it in the spot most likely to do its job.

I almost took it. I would have. My house could have used some hope. I could have tucked it into the pot that grew the Chinese evergreen that my mother-in-law had given me. I could have placed hope in the little pile, the cairn, of rocks on the end table next to my pile of books. I could have put hope in my pocket for the moment when I needed to quietly reach in to feel its reassurance.

I could have, but I remembered that viruses can live on stones, even hope stones, for… How long can viruses exist on hope?

So I left the hope in its little knothole for someone else to find, someone who wasn’t afraid to reach out and take it in. And I began to limp away with Teddy leading the way. Remember Teddy?

Then, I stopped, hobbled back, and pulled out my iPhone to fiddle with its camera. There is more than one way to pick up hope.

I left The Hope Stone in its knothole for some other recipient to find but as I walked away, I tucked a little bit of hope into my pocket inside my iPhone, something I could pull out later, as I watched the burning, the shouting, and the looting, something I could cling to.

I’m grateful for the kid who shoved a painted rock into the knothole of an old tree. We can all use a little bit of hope.

Thank you for listening, jules

Filthy

I wear a mask in public. It’s not a political statement.

Yesterday, I had to get some dirt and sand for my raised beds. I’m growing a garden. I’ve always wanted to plant in raised beds and already, I have tiny Brussels sprout sprouts growing in the temporary pots I planted them in last weekend. They’re cheerful little greens. They grew an inch yesterday. Cheerful.

Or maybe I’m the one who’s more cheerful than I was last week. In all the staying-at-home, I didn’t get my usual blood draw and my usual visit to my friendly endocrinologist and things went a little wonky for me for a while, maybe a little more than a little. I was exhausted and sad, wonky. But then I finally realized why I was feeling wonky. It’s hard to do, you know. Even after all these years of having thyroid problems, you’d think that I’d understand that the fatigue came from the place it always comes from, that there was a reason for my sadness. I thought I was reacting to the pandemic. Thousands of people are dying. It makes sense to be sad, right?

My family is at risk. My husband, though he works as a project leader and volunteers for Boy Scouts, is in the same category of risk as an eighty-five year old. My son, though he’s studying engineering in college, is bundled with seventy-five year old people. My mother, my brother and even my sister are in high-risk categories. To some, they’re expendable. But not to me. I’m fierce and angry and sad that so many people think getting their roots colored is more important than the lives of my family. Whenever I thought about that, I started crying again. And every day there were reminders. I was sad and exhausted, so exhausted.

It felt normal to react to that way. I’d never lived through a pandemic before. This is what I thought people did, cry and worry and sleep too much for fear of losing their family members. After one day of trying a higher dose of my thyroid medicine, I felt better. After two days, I realized I could still worry about my family and react to the pandemic without crying, forgetting to clean the litter box, and sleeping too much.

Now that I’m feeling more cheerful, I wonder if it’s acceptable to be cheerful during a pandemic. I’m still worried about my family, but in between, while I’m doing my usual stuff, writing, reading, helping my students, cooking, sewing PPE gowns, all that stuff, I feel pretty cheerful. Like my baby Brussels sprouts.

Yesterday was weird again.

I arrived at Home Depot to buy sand and compost for my raised beds, for my baby Brussels sprouts. Before I got out of my car, I put on nitrile gloves and my homemade mask with the vacuum bag filter in it. But was it good enough? As I loaded compost and mulch and seeds onto my trolley, I realized that only half the people in the building wore masks. Not all the employees wore masks. I worked really hard to avoid the unmasked people, but we were in aisles that were narrower than six feet. It was impossible. It was frightening.

Then, I needed help. Which was the cleanest sand for growing vegetables? One of these guys ought to know, right?

An employee with a mask approached me when I waved at him. He was safe for me to talk to. He wore a mask. Whew.

But as he approached, he pulled his mask down to his chin and said, “Can I help you with something?”

I tried to act normal. But what is normal when the safety of your family is at stake? You’d think he’d just understand that if I wore a mask, he should also keep his mask in place, right? I tried to reply to him.

“Uh, I, uh…”

I was speechless as I looked at him breathe in my direction. How far had his aerosol breath come toward me? I took a step backward. He raised his eyebrows. I tried again.

“Do you know if this play sand is safe for growing vegetables?” It was embarrassing that my voice was muffled through the mask. I’d have to get used to that. I felt like I couldn’t breathe. I felt a little panicked. Yes, I got a shot of adrenaline. My heart rate rose. My eyes felt that little pop as they adjusted.

Then he said something but I couldn’t make myself understand him. He turned and walked to another area of the garden center. He kept talking. I made myself follow him, focusing on the trail of breath swirling behind him instead of the words he said.

Are you old enough to remember how Charlie Brown’s parents talked? The muffled, ‘wha wa wa-wa wha wha…’

That’s what he sounded like to me in my fear. I wanted to move away from him. My family was at risk here. I’m a mama bear when it comes to my family. They are not expendable. I couldn’t catch my breath.

He turned toward me and pointed to sand next to bags of cement. Then, I found my train of thought.

“Is that clean for amending soil in a vegetable garden? It looks like it’s intended for making cement. Would play sand be cleaner?”

And he said it probably would. I managed to end the conversation and push my trolley away without being rude. Why is it more important not to be rude than it is to protect my family? I put some distance between me and the employee who technically wore a mask, but didn’t really.

I tried to catch my breath and stay away from people milling about while I loaded the rest of my stuff and found a packet of zucchini seeds I wanted. Sweat dripped out of my gloves at the wrists. There was a line for checkout. I wandered about for a bit longer at a distance. I pretended to look at flowers. I could tell my arm pit sweat showed.

Fuck the flowers. I wanted to get away.

Finally, there was a gap in customers and I pushed my heavy trolley to the checkout guy. He stood behind a Plexiglas panel. That was good. He didn’t wear a mask. That was bad. But he stood between me and the way out.

I tried to smile at him. At least we had the Plexiglas. Then, at the end, he leaned down to give me my receipt. Could his breath blow under there? I wanted the receipt. I wasn’t sure if I’d bought the right sand. But still, I wanted to get away. I wanted to get outside where the breeze came from a direction with no people.

Finally, I pushed my trolley out of the store and across the parking lot. I was away from people who could be infected. Once I loaded the stuff into my car, I took off my gloves and got into the driver’s seat. I’d have to glove up again when I got home and unloaded the car. All of that stuff I’d just bought seemed filthy. I felt like I was filthy because that employee breathed on me.

I burst into tears.

And I couldn’t safely wipe my eyes because I was filthy. This is the new normal.

Thank you for listening, jules

Looking into its Eye

Compared to my friends, who are complaining that they can’t go for walks because the trails are closed, I don’t feel like I’m doing very well.

I’m still working and that work generally cheers me up. I feel like I’m doing something to be able to help a student prepare for a test that might have completely overwhelmed him if we hadn’t worked online together. I like asking students about their projects,. I like telling them to read, write, and do art. That’s one good thing.

I’m making masks and later today, I’ll make gowns for a nursing home that’s having trouble with PPE. That’s another good thing.

My family and I are tucked in at home and so far, we’re safe. We have good methods of disinfecting everything that comes in the house and we’re wearing masks and gloves when we must go out. That’s the best good thing. Right now, my family is as safe as we can be.

But I struggle with stress.

I remember feeling this way in previous years. Whenever Nick got pneumonia, I felt this way. He got pneumonia six times between the ages of four and ten. That was two to six weeks every spring during which Mike and I worked to keep him breathing, always gauging when we needed to take him to the ER. The staff there knew him by name, called him a frequent flier. They blew up latex glove balloons for him. They gave him paper and crayons. They let him teach them how to make the heart monitor fit the right way on his finger. They were so kind.

I was in a separate place than my friends who just couldn’t understand what I was going through. For days on end, I had been up all night with a boy who struggled to breathe while they worried about waiting for their children at soccer on days that it rained. They faced deadlines and errands and colds. I faced oxygen saturation and prednisone and heart rate. They slept at night. I slept when I could. I could see, easily, what my life might become on the other side of that struggle. If Nick died, would I have the grit to go on living?

I still don’t have an answer to that question. I suspect I might not.

The year of the H1N1 virus, Mike and I did not breathe easily. We were always washing hands, always wondering when we should take Nick out of school to keep him safe. That was training for this.

Every evening now, I sit down to contemplate the total number of people who have died from COVID-19. It’s getting harder to imagine the families of all those people. There are too many, a whole city’s worth of grieving people. But I sit for a few moments every day to think of them. I imagine their frustration because they couldn’t accompany their family into the hospital, their agony that they couldn’t hold their hand during their last breath, their grief because they died alone, their futility because they can’t even gather together with loved ones afterward.

One of my friends said I shouldn’t watch the news for a while. I can’t imagine ignoring it. It’s horrifying to think that these are the people who said that same thing to me when our government put children into cages. Turn off the news, they said. Don’t watch.

If we all stood on a beach and could see the tsunami coming, I would have to watch. I would not be able to look away.

Twice, I’ve been witness to someone I loved at the moment they died. The first time was when I was thirteen years old. I sat with my father. I could not have turned away. That grief was deep. It lasted a long time, years, probably because I had no one I could really talk to about it, no one I knew who related to that moment, the moment of the last shuddering breath of someone I loved.

I wake up in the morning, remember what is happening in the world, and feel that grief all over again. I know I have been given this wonderful life with my two wonderful people. I know exactly how fragile that is.

It feels like fear, but I have to tell you a secret: it’s really love. In all this stress, I know I am looking love in the eye and it washes over me.

Thank you for listening, jules