On how to see

I am doing an in-person interview because the editor who has hired me to write the piece I’m working on prefers her writers to do in-person interviews. This is important only because while I understand the point—it helps build rapport with someone you are about to ask a bunch of very personal questions—I am thinking of time, and how I don’t have time for this, for shoes and combing my hair and driving into town and hunting for a parking spot.

The magazine is paying me a lot of money so I am making the time. But I don’t have it. I am working on a developmental edit with a tight deadline and teaching a feedback-intensive class and trying to deal with Jessica transitioning from pediatric to adult medical services, which for a lot of people amounts to making a new patient appointment with an internist but not for Jessica. For one thing, I have to deal with a bunch of people who refuse to talk to me, despite my being her legal guardian, because she is eighteen. Apparently Jessica is the only young adult in the world who isn’t fully capable of taking care of herself. Anyway, don’t get me started.

She is living with me full-time now. For a few years she split her time more or less equally between her father and me but now she is living with me. In her idea of the world, she is a grown up and we are roommates.

In my idea of the world, I love her dearly and I would never consider her a burden but she takes so much time.

I have a novel I am trying to finish and I hate the novel but I would like to finish it but I am doing all the paying work because it is available and I like to stack up money in the bank for when the work slows down, which it will, inevitably.

Right now there is no time so I am cramming together the interview with buying some lentils at the grocery store and picking up some of Jessica’s glass from the ceramicist who fires it.

I arrive at the studio and she begins packing the pieces in bubble wrap and placing them in a box. There are a few candleholders that turned out very well and then some trays, and we both frown down at the trays, our hands on our hips.

The glass has bubbled. It looks as if the bubbles you get in a pot of boiling water have hardened, as if this were the glass version of the bubble wrap Melissa is using. I have never seen this happen before and I don’t know why it has. I do know that glass is hideously expensive. All I can see is a hundred and thirty five dollars I might as well have set on fire.

“I wonder if it’s the glue,” Melissa ventures but I shake my head.

“It’s the same glue as always. And she only put a little on the corners to hold the pieces in place, not where the bubbling is.”

I frown. Jessica is trying a new approach, fusing big slabs of glass together, then slumping them into shapes, but something is going wrong in the process. It’s always something. Like with my writing. Just when I think I know what I’m doing, it turns out I don’t have the slightest clue. This is why I hate the novel I’m working on; it has bubbles like this and I don’t know how to fix it.

Jessica doesn’t have the technical knowledge to understand what’s happening; kilns and cones and firing cycles are too complex for her to understand. It is one more thing for me to figure out and I don’t have time. It is an especially difficult challenge when someone else is doing the firing. If I had my own kiln, I would test until I found out but to have my own kiln I would need my own house or at least my own studio; the small rental I live in with Jess has no room for a kiln. Plus imagine trying to explain to the landlord.

So I have to buy a house with a shed out back and hire an electrician to install the commercial 220 volt power I need and so far I haven’t been able to scrounge together a down payment. I don’t know why she couldn’t have found something simpler to love, like horses. Her grandmother has a barn and a pasture. Horses would have been simpler.

But glass is her thing and I respect that and I understand that this is all part of the process; it is like the one million words I’ve written that will never see the light of day because they were the wrong words in the wrong order. But it is an expensive process, costing more time and money than I have.

“I suppose it could be air getting in between the layers,” Melissa says. “These big slabs . . . air might be getting under.”

I nod. “Right, and to secure the pieces so no air gets in, you’d have to use a lot of glue and that much glue will burn.” We’ve had that happen before. Two hundred and fifty dollars of glass with burns on it.

I sigh. I will have to see what I can find out about the problem and how to fix it. Maybe the people who run the glass society I joined a few months ago will know or could recommend a book.

“Thanks,” I say, and carry the box to the car and wonder how I am supposed to keep doing it all, forever, keeping my daughter’s dreams alive and my own, too, while making sure we have a roof over our heads and food on the table. I am fifty-one years old and it should be easier by now; I should know how to do this but somehow I never do.

I am just in time to pick up Jess from school. When we get home, we unpack the glass. I lift one of the candleholders to the light.

“Look at that,” I say. “Gorgeous.”

But she is not looking at the candleholder. She has taken out the trays. She has removed the wrappings and set the pieces on the table. She is running her fingers over them, studying the bubbles with her fingertips. She leans down to look at each tray in turn. The bubbles have formed in different patterns.

“I wonder how that happened,” she says.

“Not sure. I talked to Melissa—”

She looks up at me. “I love the texture. It is like the glass is breathing. It is like it is alive. If you look hard enough you can see it move. I want to do more just like this next time. I will try to get more bubbles in. Mom, aren’t these beautiful?”

###

On not being quiet

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On Wednesday Jessica had an early release day from school and so we went into the studio and made some glass. Jessica is a glass artist, an eighteen-year-old senior in high school, my daughter and my ward. She is cognitively impaired and through a painful and too-lengthy guardianship process, her father and I proved to the court’s satisfaction that she could not handle her own affairs.

She has tuberous sclerosis, a disease that causes seizures and brain tumors. She has a degenerative spinal cord disorder that affects her physical function. She has spent too many weeks in hospitals and has too many scars on her body from all the times the surgeons have cut into her flesh to keep things from going more badly wrong than they already have.

I am intimately aware of what her condition has cost her. I know precisely, to the last measure, what it has cost me.

On Wednesday I am not thinking about any of those things. I am relaxed for the first time in weeks—work has been very busy lately—and being with Jessica is like what I imagine being with Buddha would be. No judgment, and many smiles.

The studio owner who fires Jessica’s glass greets us with enthusiasm. She has new glass molds that she wants Jessica to try. What I like about Cheryl is that she talks to Jessica, not to me; most people assume Jessica won’t understand and sometimes she doesn’t, but then sometimes I don’t, either, so I don’t really see the problem. But other people do, and so they talk to me about her instead of talking to her.

We spend hours in the studio, working and playing long past the time we meant to leave, and I am thinking what a good day it has been.

The next morning, Thursday, I turn on my computer and I click on the link to my favorite columnist’s column, and my jaw drops: the cartoon accompanying the column is so breathtakingly cruel that for a minute I can’t believe what I am seeing. It’s a caricature of a cognitively impaired person, and I sit there, stunned, trying to figure out how this got past Carolyn Hax, who is usually not an asshole even on those occasions when I disagree with her advice, and her editor, who I assume is charged with “let’s not offend readers and advertisers for no good reason.” The cartoonist is a jerk, that much is clear to me, and exactly the reason why we have editors, or should have editors.

I post a “wow” comment on Facebook, which is mostly ignored, whether because Facebook algorithms have hidden it from everyone or because no one gives a fuck, I don’t know and can’t tell. A friend asks if I am going to email the Washington Post about it, and I say, “I would if I could articulate anything other than visceral rage.”

When I am capable of articulating anything other than visceral rage, I decide not to email the Post. I’ve had these kinds of conversations before. Some bloviating blowhard will tell me I’m being overly sensitive or “artistic expression” or “I’m sorry.”

And the thing is, “I’m sorry” is bullshit. “I’m sorry” doesn’t fix the harm that is done. “I’m sorry” means “I’m sorry you feel that way because now I have to spend five minutes pretending I give a damn.”

I am tired of these battles. I am tired of trying to point out that my daughter is worth as much as any Ann Coulter and almost certainly more; I am tired of trying to find new ways to say that making fun of the intellectually disabled is such jackassery that I can’t even understand why I have to form words to try to explain. And I am tired of everyone’s fear and judgment: that somehow it will rub off on them, that somehow Jessica is to blame for being damaged in ways she cannot control. I am tired of being dismissed every time I say “please stop this,” because there are so many bigger problems in the world. I guess like that Starbucks cup.

And so the result is a dreary little accounting; the columnist falls several notches in my estimation, the two friends who bothered to respond to my comment rise a couple of points.

My Thursday is a much less pleasant day than my Wednesday. “Just ignore it and move on,” I say to myself, and I turn to an article in my local paper about how the university has hosted an open house discussion about racism and racial tension, and considering what is happening at Mizzou, this seems like a good idea to me. But the reader comments on the article make me angry all over again: a bunch of privileged white men tell the students they should just shut up and ignore it, that they’re overreacting, blah-blah-blah. Mansplaining to the oppressed what racism is and is not.

Several of my colleagues take a slightly different tack. They would never want to appear racist so they focus on making fun of the idea that students should be able to have safe spaces in the public sphere. The right to be free of harassment in the public sphere accrues only to the privileged. The idea that the disempowered might desire—even demand—the same consideration is met with condemnation and ridicule.

I’m sure none of these people—not the cartoonist or the columnist or her missing-in-action editor—bore any specific malice towards the cognitively impaired. Nor do I think that the colleagues and commenters are frothing-at-the-mouth white supremacists. But I see a common thread, a failure in understanding the experience of the disempowered is vastly different from that of the privileged. I think maybe it’s time for the privileged to sit down and shut the fuck up.

It is Friday now. We are getting ready for school and work and I have promised Jessica I will finish packing for her art show this weekend. My visceral rage has subsided into sadness, that she lives in a world that thinks she is so much less than, that fears her so much it has to turn her into a caricature, that doesn’t even try to understand her as a human.

“I hope I sell some pieces,” she says as she gets out of the car with her book bag, the one with fifty pencils in it, a pencil for every time she has done something right at school this fall and has gotten rewarded for it. She carries the bag like a talisman of her worth.

“I bet you will,” I say. Thinking, it is harder to be an entrepreneur for a young woman like Jessica than, say, Donald Trump, and a hell of a lot more amazing. But no one ever notices that.

Her attention is focused on the school building ahead of her. I know she is going over in her mind all the things she will have to do before her first class. Get her locker key from her teacher and put her book bag in her locker and get a notebook and pencil out to bring to her first class. Going over and over the steps so she won’t forget them.

I drive home. I turn on my computer. I think how I am tired of trying to make people understand. I think I should just shut up and get on with life.

But I don’t. Because it is not okay to devalue my daughter. It is not okay to treat her as less than. It will never be okay. And I will never shut up about it.

It is a promise I made a long time ago when she was first laid in my arms and I knew we would have battles ahead. I did not know then what shape they would take, but I know now. And I will not be silent.
###

On using a knife and fork

Jessica’s last day of school is really just a last morning of school, so when I pick her up, the whole day stretches ahead of us.

“How about lunch in Lawrence?” I say.

“Yes.” She is without hesitation. Jessica is a girl who likes lunch. “Where?”

“Let’s go to Encore,” I say. “They have those bento boxes at lunchtime. I love eating my meal out of little compartments.”

She shakes her head. When we arrive at the restaurant, she does not order a bento box; she orders a regular meal.

“Junior year is done!” I marvel. “You’re officially a senior now.”

“Can you believe it?” she says, like a ritual response. I have been saying, “I can’t believe you’re going to be a senior” for about three months now.

“No, I cannot.”

Our meals come. She hesitates, then picks up her knife and her fork. I bite down on the offer I am about to make. She cuts her meal into pieces without any help.

It is the first time in her life that she has ever been able to do this. Usually there comes a time when the need to use both hands at once defeats her, when her shoulders sag and I pick up the knife without a comment. But not today. When she is finished, she is proud and relieved. I know I need to say something because it is a big deal, but it has to be the right thing. She knows that other people could manage this when they were five years old. But she is not other people.

And she knows that in a few years the disease she has might steal away this small triumph and I will be back to cutting her meals up for her. No victory, whatever the cost, is permanent. But that does not mean they are pointless or we should not celebrate them.

“Good work,” I say, and she smiles.

Just yesterday I sat on the front porch, a notebook balanced on my knees, wondering why I am still trying to learn to write, thinking of all the people who do it so much better than I do. I will never achieve what they have achieved and why—at my age!—do I even bother? I am not even talking about praise and reward. I am talking about craft. What if I had not decided that I would be a writer when I was five years old? What if I had chosen another road, and found the thing I am better suited for? I would be a lot less frustrated, I can tell you that.

But drinking my jasmine tea across the table from my daughter, I know the truth is that we are each on our own journeys. The suffering comes when we think our journey should be like someone else’s.

She does not order dessert. She knows when to be satisfied. Maybe tomorrow. But right now, what she has done is enough.

###

On Halloween decorations

This is a Halloween essay from 2011.

 

This weekend, at Jessica’s behest, we decorated the house for Halloween. Now, at your house, Halloween may be all black and orange and eerie music, but at our house, it is quite pink and sparkly. The witch’s broom glitters, and the pumpkin has a cheerful smile, and we had to put out a sign that says “spooky” so that people who might not otherwise realize it would know that the house is, in fact, spooky.

She pronounced herself satisfied with our efforts once we added the black cat to the mix.

“It is a ceramic cat,” she tells me, “which means it is breakable and starts with an s.”

I untangle that and say gently, “Ceramic starts with a c, although it certainly does sound like an s.”

“It is a ceramic cat with a c,” she says, her index finger writing in the sky in the way that means she is trying to remember something, always an unreliable and inefficient process for her.

“Do you like the ceramic cat with a c?” she asks.

“I love the ceramic cat with a c,” I say.

“And why is that?” Her idea of a conversation is to impersonate an investigative reporter and pepper me with questions. Sometimes she writes her questions down in a notebook so she will not forget them.

“Well,” I say, “I like the ceramic cat because it reminds me of Halloween. And it is very pretty. And you picked it out, and I always like the things you pick out.”

She nods graciously, a queen accepting the praise that is due her. “What would you do if the cat spoke to you?”

“If the ceramic cat spoke to me?” I ask. “I would definitely be startled.”

She giggles. The idea of mama being startled appeals to her. “What if it said, ‘Hello, Jennifer’?”

She slants me a sly glance. She loves to use my given name in conversation, as if using it gives her a certain power over me. I may be mama, the source of all things, but I am also just Jennifer, as ordinary as a pin, and I better not forget it.

“Hmm,” I say. “Well, after I was through being startled, I would probably say, ‘Hello, ceramic cat.’”

“‘Hello, ceramic cat,’” she says, as if perhaps the cat has spoken and I just didn’t hear.

“Hello, Jessica,” I say in a silly voice and she pokes me and says, “That is you. Isn’t it? That ceramic cat cannot talk, can it?”

“No,” I say. I am never quite sure what she thinks. Her toys seem to have a secret life that goes on around me while I sit here doing my work obliviously. She is the same teenager who thinks there is a monkey in one of the trees near the library. She has seen a squirrel in it, and a blue jay who made a terrible racket, so why not a monkey? Why not anything?

She takes a strand of my hair and winds it around her hand as she has done since she was three months old, as oblivious to her fate then as she is now.

“Do you think the ceramic cat is glad to be here?” she wonders. “Instead of on the shelf at the store.”

“I’m certain it’s glad to be here,” I say. “Can’t you see it smile?”

“No. I can’t see if from here.”

I wince. Even after all these years, I often forget that the world is a fractured kaleidoscope of indistinct patterns and colors for her. But she is never impatient with me when I forget.

“Well, you will just have to imagine it,” I say and dutifully she closes her eyes and imagines it.

Then she opens her eyes and says with a smile, “What would you do if that cat said, ‘boo!’?”

“I would say, ‘eek!’”

“No you would not,” Jessica says disdainfully. “You never say ‘eek.’”

“That’s true.”

“You would say, ‘Dammit! That startled me!’”

“Probably,” I say and lean over to kiss her cheek, so plump and smooth.

“Boo,” she whispers.

“Dammit!” I say. “That startled me!”

And she laughs and unwinds my hair from her hand. “That was me, Jennifer,” she explains. “That was not the ceramic cat with a c.”

“Thank goodness.”

“Yes,” she agrees. “I think that would be too much startling for you.”

“It would indeed.”

“Ceramic with a c,” she says.

“Ceramic with a c.”

On the view from the other side

We are watching a movie, a romantic comedy, and I don’t even remember the title right now because the movie doesn’t matter; the movie never mattered, it is just the thing we are doing together when I look up to see that Jessica is crying. I have no idea why; there is nothing we have said or done today that would provoke this.

I say, “My goodness, what happened, darlin’ girl?”

“I am so afraid that you will die,” she says.

It shocks me into silence, that she could articulate this. Someone has died in the movie, a minor character, and so I can see why she is thinking of death, but not why she would relate it to her life or to me. As far as I know she doesn’t have the slightest conception of what death is, although she has experienced the loss of people who matter to her.

But to Jessica, losing someone to death is like . . . . birds; they fly south for the winter and as far as she knows they’ll return again some day. She does not understand permanence or forever.

Why should she? Nothing is permanent for her, but that does not mean it is lost. She cannot remember what happened last week but that does not mean it never took place. It is just waiting somewhere for her to find it and she never knows when she might happen upon it again.

But I am taken aback by her weeping. She does not want to lose me. In all of my calculations about the world and What I Will Do About Jessica, it has never once occurred to me that she would mind so very much.

I’m a single mother in my late forties, and years ago I did all the things I was supposed to do to ensure my daughter would be cared for in the event of my death. I took out a life insurance policy, and I made a will, and a healthcare proxy, and a supplemental needs trust. I have named executors and trustees and who I want to be Jessica’s guardian in the event that her father dies at the same time I do, reasonable and rational through it all, not even flinching when the attorney asks me, “How likely is it that she’ll survive you, anyway?”

I don’t know. If you had asked me when she was nine months old, I would have said, “Not at all,” but these days I think she might surprise everyone. In any case, I have always known, then and now, that I will have to outlive her.

When she is in the hospital, and the neurosurgeon is speaking unpronounceable words to me, I cannot bear the thought that she will leave this world, I cannot even contemplate my life without her. But I know that it would be best if someday I were to hear those words: I am sorry but she did not survive. Years from now, of course, decades. But someday.

It is the best thing possible, you see, for her to live a good long life, but not too long. Just long enough that I can share it all with her, to the very end, before I succumb to Alzheimer’s or the infirmities of advanced old age. It would be best for her to go before I do.

If I have one thing to reproach myself for, it is in not having her sooner. I am more than thirty years older than she, and I would have been wiser to have had her at eighteen. The odds would be better, then.

I know that most mothers don’t want to outlive their children, but I do. I know what will happen to her when I die, and it isn’t pretty. It isn’t just that there will be no more trips to Rome, or lunch at Ingredient; no more George Strait on the radio while we make blueberry muffins. It is that they will take away her autonomy, her ability to choose who she will be in this world. They will make her fit into their rules and regulations, and she is a compliant girl, and she will go quietly and die by degrees, and her conversations will go unrecorded by anyone. They will turn her into nothing, bone and ash, and I have struggled so hard to reveal her worth.

There will be a home, I don’t think even the state government of Kansas is so lacking in compassion that she would be forced to live on the streets, although give the governor another twenty years, and who knows. But there will be a group home, I think that is probably true. I have seen how they are run, even by the people who try their hardest and with the best of intentions. They are warehouses for the less-than. It could hardly be another way. There is only so much money, and so much time, and almost no one cares.

I will have to live forever, I tell my friends but what I mean is I will have to outlive my daughter by just one day.

I have never thought this was too much to ask, but I know the universe by now and I will not be surprised if it has no intention of granting my plea. So far it has never granted one single pardon. So I put money in the bank and I say to friends, if you are here after I am gone, please look out for my baby girl.

Jessica does not know about these calculations, or what I talk about when I visit the lawyer. She does not imagine herself in the future at all. I tell her that after she graduates from high school in two years she will need to have a job to do, and even that is so much an abstraction that she can barely understand what I mean.

But she is crying now; she is imagining herself without me and it is deeply upsetting to her. Not because she is concerned about blueberry muffins or no more trips to Ingredient, but because she loves me and cannot imagine herself without me, just exactly as I cannot imagine myself without her.

She has never been a child given to demonstrations of emotion, and even so I have always known that she loves me. But I have always suspected that this is because children love their parents, they can hardly help it, it is part of the pact.

My love for Jessica is raw and bloody and violent and feral and deeply possessive, and if provoked even I do not know what I might do, but I would not be surprised to find it violated every tenet of every law ever laid down by a righteous man.

That is how much I love my daughter, and it has never once occurred to me that she might love me just as well.

Calmly, I tell her that if I die, her father will take care of her, and if he dies, then her grandparents will, and if they die, then our friends will. I name them one by one, a litany meant to reassure her that she will be okay, thinking I need younger friends.

It doesn’t occur to me to lie to her, not till the end when I realize that is what she wants to hear, a lie. I have never lied to her.

“I don’t want you to die,” she sobs and I don’t know what to say. This is not our agreement, somehow. I know the reasons I don’t want me to die, and they are practical, mostly. I want someone to take care of her because she will not be able to take care of herself, and since no one loves her as much as I do, then that person should be me. Only I can’t be sure that will happen and so I make careful plans, and try not to think too far ahead.

I have always thought she loves me insofar as I am her mother, and I take care of her and see her off to school, and take her out to dinner now and then and to lunch on Saturdays. I know what her favorite foods are and how to prepare them, and I know that she likes to go asparagus picking in the spring, and to the zoo in the last light of October.

I love every part of her, the literal part that can only identify sarcasm after careful consideration, the stubborn part that makes her intractable when faced with a challenge she doesn’t care to face, the slow pace she goes, planting one foot carefully in front of the other, because the world is full of dangers for a girl who does not experience it the same way anyone else does.

The asparagus picking and the learning to make risotto are all signs that I love her, they’re the way I show it, but I have never really thought she returns the feeling in the same way. I have made the mistake of thinking she is like anyone’s child, rooted lightly in the soil, and ready for a life away from home.

But she is not that child, and if her love is rooted in dependency, then that is true of mine as well. She is the one who believes in the stories I tell, and helps me bring them into being. She is the one who has never once lost sight of what we are to each other. She knows what our agreement is: that we will take care of each other until the end of our days.

She holds me tight while she cries, and I realize with a shock that she is the only one I have ever loved who has never let me go.

###

My collection of travel stories, Travels with Jessica, is now available! Kindle and paperback here; other ebook formats here. And I’ve published my essay “For Jessica” as a small book. Kindle and paperback here; other ebook formats here.

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