Grief, Racism, Uncategorized

High elopement risk

IMG_2880.JPGMy mother spent the better part of March of this year living on the geriatric psychiatry floor of a hospital near my home. To get into this wing, I had to pick up a phone, sign in and surrender my purse. Signs at the doors warned of “high elopement risk.”

Elopement: leaving a safe space.

My mother was the most ill patient in the psychiatry ward. She did not speak coherently, her only words short riffs of old phrases thrown together. She made no connections with her fellow patients and she never slept. My visits were spent in the common area of the wing. This space brought together a small crowd of regulars, folks whose faces became familiar to me. There was Mary, lucid enough to once say “I haven’t seen you here before,” but always disheveled and melancholy. I noticed an inscrutable woman who played cards without playing cards, deploying all the motions and none of the method of a card game. And then there was Ethel, loud and urgent, yelping “Heeeelp!” but sometimes losing interest before anyone came to her aid. She was my favorite, full of drama in a pink nightgown.

It seemed like a tough gig, working behind those locked doors. Decisions requiring a certain nuance would arise in chronic rhythm. Ignore the latest wail from Ethel or go to her?

Elopement: leaving a safe space.

Among the staff members dressed in scrubs was a young African American man. He was a bright eyed twentysomething with a ready grin, his hair long and in dreadlocks. He was friendly, freely commenting to me about the newspaper I could no longer share meaningfully with my mom. He filled me in on her preceding hours, which generally consisted of my terminally ill mom refusing and struggling. He betrayed not a moment’s frustration with her. In fact, the two of them always managed it all, making it through my mom’s showers, her garment changes and her meals.

Research in social psychology has long provided insight into the impact of bias. We’re biased to favor our own viewpoints. The “false consensus effect” is a classic observation, in which we believe our knowledge and beliefs are shared by a majority of others.

A related phenomenon is known as naive realism. This is the belief that one’s private experience, which is inherently subjective, is a universal reality. A clever way of demonstrating this, first undertaken by a psychology graduate student in the 1990’s, is to ask individuals to tap out a song on a table. While a tune in your head might seem well conveyed via those taps, the tempo and melody both clear, the effect tends to sound like just so many random knocks to a listener. Still, subjects overestimate the likelihood of a partner’s success in discerning the tune.

So we tend to think that our views and our experiences are shared by others. And we are inclined to think that our own ways of being are objective, unvarnished and universal.

Elopement: leaving a safe space.

I liked my mother’s young care provider and admired his ease. There were things to be done, and he did them. I would have had a harder time in his role, even with my own mother — or perhaps especially with my own mother. I might stop to lament, or I might hesitate, or I might impatiently murmur why can’t you. My frail, confused mother moaned and groused her way through the acts of caregiving this man provided, and she was met with only his gentle face and firm instruction.

Now that months have passed and my mother has died, I still think about that man. I’m aware that although I found all the staff members’ jobs intriguing, my attention was so focused on him because he did not fit my stereotype of a professional in geriatric medicine. I couldn’t help but wonder why a young black man would choose a position of caring for elderly, mostly white individuals with serious psychiatric illnesses. Moments of connection would be less than in other medical specialties, the tasks of caregiving especially fraught with awkwardness for those of us observing. Moreover, patients with psychiatric illness — like my own mother — can be noncompliant at best and aggressive at worst. And I feared what I knew was possible: this man’s own patients could very well be biased against him. So why choose them?

Elopement: leaving a safe space.

I know that I made certain predictions about my mother’s care provider based on his appearance: his long hair, his thin frame, his young age, and, I don’t doubt, the color of his skin.

Even if my predictions were as benign as expecting him to like hip-hop, they could have impact. We are all repeatedly generating, and repeatedly subjected to, biases. For me, a middle aged white woman who drives an old minivan and could stand to lose a few pounds, these biases may often be favorable or at least neutral: I probably have children, or am friendly toward kids. I probably speak English fluently. I probably enjoy the company of other women my age, am not filthy rich, am not a marathoner, and am trustworthy.

That last one is a big one. Does my mother’s care provider enjoy the same assumption in his favor? Mike Ditka, former NFL coach, commented in response to the recent silent protests of professional and amateur athletes that, “I just don’t see the atrocities going on in this country that people say are going on.” Lacking particular insight or empathy, Ditka and those with similar attitudes remain naive realists. A masculine white man in a male-dominated high-income career like Ditka’s may be relatively unlikely to encounter biases against him that undercut his sense of freedom, that question his dignity, or that impede his progress. Ditka’s movement through the world is his perceived reality, which he — like all of us — mistakes for an objective truth. Lifting oneself out of one’s own veil requires effort. It requires pause. It may represent an elopement of sorts: a willful movement out of a safe space. Most of us, most of the time, choose the well-greased path instead and allow our own perspectives to dominate our beliefs about and responses to others.

My mother had a career as a school librarian. She was a skilled researcher, adept at connecting with both students and faculty. She was well liked and well informed. At the end of her life, she had lost virtually everything: profoundly disabled, she required nearly constant care to make it through the day. It was an elopement of body and brain away from the safe spaces of ability and achievement to the modest floor of pronounced, unremitting need. Once pushed away from her safe spaces, she was tended to by a man whose place at her side may have represented a further elopement, his own: defying the likeliest expectations of him, despite challenges both shared by others in that role and unique to him, there he was.

For the sake of both of them, the dying white woman and the young black man, may we all elope more. May we accept that there is no one reality apart from each of our minds, and that the fears, beliefs, and even the joys of others ought not be dismissed simply because they are not our own.

My mother was fortunate in her final weeks to have that gentleman at her side. I wish now that I had learned his name. There they were, at that moment in time, existing within a practical safe space but both far from anything so describable. Life crosses paths of souls, and we are all at turns both powerful and at each other’s mercy. Let us all elope together.

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Fate, Grief, Love, Uncategorized



I wrote many poems when I was in college, handwritten in a journal or on the proverbial back of an envelope — or in one case, tucked into a piece of paper so tiny that keeping track of it was a long-term marvel. I had many ideas that could often tumble forth despite me. I was cautious in life but free and forward in these poems. Whereas the poems I wrote in high school were meant to impress writing instructors, the words of my college years were only for me. In one poem, I wrote, “I think the wind begins like love does” — both are just there. They needn’t build up from some nascent state, gaining skill. Both have no real demarcations, no moment available to discern: the before versus the now.

Even on a day that seems still and windless, when one stops to look at the tall branches of a tree, they are moving. The wind’s work, the many modest bobs and pitches, are persistent and unpredictable, and the factors numerous: length of branch, moment in time. The end result can be pleasing, the motion created like what a child might imitate with arms extended and hands loose: swaying.

Our lives too. The interveners are many. Our course is begun long before we arrive, by the bobs and pitches of other lives, the paths laid and the decisions, a reflex, a moment, then another. 

I have a thin notebook in which my father wrote only two diary entries, two years apart. The first, dated September 1, 1964, describes his arrival in Denver. Thirty two years old then, he had been a Redemptorist priest for five years and had received a new assignment after spending nearly all his life in Missouri. He was bound for St Joseph’s parish in Denver.

“It was Tuesday. Expected someone at station — no one. Came out by cab. Lady cab driver never heard of St Joseph’s.”

After a brief description of the house where he would reside, he laments: “The transition stage with so many changes is very confusing.”

A bob, a pitch: thus were set my Colorado roots, ten years before I was born, setting in place the more than four decades of my father’s life spent in Denver. 

My father fell in love with my mother, a young nun at the same parish. The circumstances of this most consequential gust were not discussed often by my parents as I grew up, they both turning taciturn whenever we brushed past the topic. The two of them first moved for several months to Salt Lake City, renting a modest apartment. My father did speak of being a day laborer there, even describing the day that his shoes were ruined by chemicals on the job. My parents’ furnishings in that first dwelling are captured in a few photos, my favorite being their cinder block and plywood “shelves” in their living room. In all these photos, they both look content, their smiles wide. The gust fell swooping in, their love already there, and then they chose the upstream route. They would be together.

They returned to Denver with their baby son, eventually settling in to a brick bungalow near a Catholic church. By the time I was born, they had bought a house in the western suburbs. My father never stopped writing love notes and love poems and painting sweet illustrations for my mother. They remained devoted to each other, chatting in the kitchen at dinner time most weeknights, attending a spirituality group together for two decades, fearlessly renting cars and driving around Europe after my father retired. My backdrop and foreground as I came of age were filtered through a prism of love most human. My mother, a French major, kept her copy of Blaise Pascal’s Pensées for years: le cœur a ses raisons que la raison ne connaît point. The heart has its reasons which reason knows nothing of.

My parents’ love story made me feel special as I grew, if not a bit embarrassed by the tale during my teen years. This spring, not long after my mother died less than 100 days after my father’s death, I wanted to return to Denver. I wanted to nest into the familiar places and cling on and touch, to hug the people whom the wind’s bobs and pitches had put into my parents’ lives and mine. The love was already there. I needed to visit people I had known for decades, those bobs and pitches having matched our lives together from streams that began in earlier lives and then endured. 

And so I went home to Denver. I rested in mornings and evenings on the shaded patio at the home where my elementary school friend grew up, hosted by her kind and soft-spoken mother, and enjoyed how loud the birdsong there could be. Another week, a friend I met at age 6 spent several minutes searching among her handmade quilts for one in blue — my mother’s favorite color — on which I could reverently rest the boxes of my parents’ ashes. Thirty six years after our first Brownie troop meeting, and there she was, tending to me in her search for the perfect quilt.

These welcome times continued, my claiming eagerly among these faces our shared memories both distant and recent. My mom’s longtime friend, her high school classmate and one time roommate, invited me and my children to join her family Sunday dinner one week. I liked when she called it “supper”, reminding me of my mother. Her backyard porch swing was perfection, smooth and steady like she, her manicured lawn and abundant flowers reminding me again of my mom’s similar joys. The breeze that blew there was a comfort, its love knowing no beginning and no end. 

And so my parents’ love story continues. Their twin declines and deaths have had an undeniable gravity that pulls, slow, on my heart, but the bobs and pitches of their lives were meant for synchrony. Le cœur a ses raisons que la raison ne connaît point.

My father disembarked from a train on September 1, 1964, and I began to love. And so I would write this by hand as a young woman, both new to and seasoned in the navigation of heart as true north: “I think the wind begins like love does.” Both are just there, unbeginnable and without end.

Dying, Grief

Picture Day



My daughter dressed herself for Picture Day this morning. When I went into her room to check on her, she was wearing the dress I’d bought her for my father’s funeral. She had worn it throughout the mid-April day of my father’s funeral mass, including the fried chicken lunch reception in the church basement. We flew home a couple of days later, I washed the dress and hung it back up in her closet, and she and I hadn’t considered it since. But there she was. She requested braids and help zipping up the back.

I said nothing about the dress. It’s sleeveless and pale blue, a reasonable choice for a warm late August day. It was perhaps an overdressed option for fourth grade Picture Day, but a part of me was just glad we hadn’t forgotten the occasion entirely. We likely would have spaced the whole thing if it weren’t for our carpool-kid neighbor arriving at our door with gelled hair and a polo shirt.

I could think of no reasonable objection that would be fair to a nine-year-old. Don’t wear that dress because it is imbued with my grief didn’t sound like it would do well paired with And find your PE shoes.

My parents died 97 days apart in the first four months of this year. I am often lonely in the wide gap the two of them left, despite being rarely alone. I realize now what a poor steward through grief I was for friends who endured losses before my own. Most of us are not eager to press into others’ grief — it feels messy, private, and, at its core, bereft of remedy. I had started a job three months before my father died. My new coworkers were distant around the time of his death, but seemed sympathetic enough. I told them I was glad to have something to focus on. When my mother also died three months after that, the company had no clue. A coworker commented on materials I had submitted twelve hours before my mother’s death, wondering why I had missed a requested minor change. It took some self-control to not respond just as coldly, to explain a possible cause to her. Reply to comment: “Maybe it’s because my mother was twelve hours from death.” My own mother. The woman who gave birth to me and cut my hair and gave me crooked bangs every single time, the one whose lullabies I mimicked with my own children, the one who sent me to writing camp and who researched every cough and rash I ever had. That woman.

That company let me go a month later, in what was likely the universe’s most urgent “blessing in disguise” possible. Despite being freed from that situation, there are some realities I am stuck with. I am spending these months as The Daughter Whose Parents Both Just Died. I field occasional calls from the hospice company that tended to my mother in her final three weeks. A counselor asks me how I’m doing with my loss. I feel compelled to remind him. “Oh. Um. You know my father died in January, so…” What I leave unsaid: so I’ve got a double. And they didn’t just drop dead. There were years — for my father, more than a decade — of decline. Of loss. Of loss after loss after loss. I can shake free from an ill-suited workplace, and by now I can whip on some sunglasses to shield tears that I often reject. But I can’t ever stop being the daughter whose parents both fell into heartbreaking dementia in their later years. I can’t ever remove the fact that despite being ten years apart in age, my parents died only fourteen weeks apart. And it will always be true that they both died frail and already-gone, the goodbyes to them both drawn out and never announced, their needs many in their final years, their eyes searching through their mutual confusion.

My daughter chose to wear the dress from my father’s funeral this morning. And there’s the thing about grief: we have to continue on in life. We have to remain our flawed selves with teeth to brush and household chores and children growing up. My son had a Boy Scout campout the day after my mother died, and I sent him with no money, no help in packing, no permission slip, and after not so much as opening the door for the family that drove him to the campground. But off he went. And I threw myself right back into life too, driving as planned to my college reunion that weekend, buying dinner for my longtime mentor and crying hardly at all throughout the weekend. And yet. I dropped off my son at an activity the next week, stopped my minivan in the parking lot, and sat there with tears dripping messily from my cheeks.

My brother and I waited two months to scatter our parents’ ashes, wanting to be together in our home state when we did so. The moment he began scattering into a creek not far from the house where we were raised, my phone fell down my pant leg. Right then. I picked it up and wondered what to do with it — I had no pocket, which is why it had dropped in the first place, and I didn’t feel like I should be crassly holding a phone at that moment, and yet I didn’t want to look away just then to put it in my backpack. This is what I was thinking as my brother began distributing all that remained of our parents’ physical bodies on earth, letting them fall into a pool and be picked up by the current.

And so it sometimes has to be. This is all part of this. I’m still here and sometimes I should’ve put my phone away earlier. My parents are gone. And now my daughter’s funeral dress has been reassigned. I have never used the word “battle” to describe a person’s experience with a fatal disease. My parents did not lose battles. Their dying was part of their living, as it will be for all of us. It’s clear that we do not get to choose the circumstances and timing of our births, whether we arrive in health and ease or whether we’re a hard-born baby. I think we expect control over our own deaths, but then life ends against script — someone far too young, or by suicide, or in my parents’ cases, after becoming so relentlessly humbled — and that control is more slippery. So the bravery might not be so much voiced in a contentious fit with a foe, but in recognizing that dying is part of life. We die. Just as our living is often unsteerable, defiant, different than we once predicted, so too is our dying, and it is all part of us.

I focused on my daughter’s braids. I’ve never been good with hair. Today I was happy with how it turned out. I decided to dart into the bathroom to get some hair spray. She looked cute in her braids and glasses and the blue dress. She brought home an essay last spring, handwritten in her 9-year-old scrawl. The topic was what she had done over Spring Break. She had attended her Papa’s funeral, she explained. “The next morning I went to a buatiful church for my papa it felt like you are sad and happy at the same time.” Our lives, our deaths, the moving on and the pushing forward, the looking back, the loss, the joy, the pain. It is all as my child understood Papa’s funeral. This is, all of this, both happy and sad at the same time.


God-Like Joy

Rachel Stewart Johnson's photo.

When Michael and I got married 16 years ago, our officiant, Father Kevin Novack, gave a memorable homily in which he reflected on the concept of “God-like joy.” We don’t hear much about God being happy, or joyful, or possessing other human emotions like pride. Yet we do impart negative emotions to God, a male figure who is occasionally angry, impatient or even vengeful. Why the lack of a happy God? Why doesn’t our understanding convey what we would probably enjoy having around: a playful figure, one who marvels at the greatness of creation, one with whom we can sit back and enjoy a lazy afternoon? Scriptures instead present God and Christ as a counselor, a source, one who can help us endure what comes. We are urged into patience, contemplation, and prayer. We are told to seek God’s help. God is not happy, but God is wise. So what then might “God-like joy” look like? I think the joy of God is in our learning. It is in the path. It is in the persisting despite trials. It is patience and quiet and chins turned finally up. The point of God is not to convince us that we ought to know only light hearts and dancing and leisure. It is to compel us to recognize the strength that exists within. God-like joy is to take what comes in life and recognize it as our own, as blemished and uncomfortable and unfair as it might seem. God-like joy might be to bear witness to the evidence that beauty is persistent. As my mother enters this denouement of her earthly life, brain and body both markedly diminished, she is at some level weak and pitiable, dependent on others, losing more every week. But she who gave much of her mind, heart, and treasure to God still folds her hands in response to prayer, still flutters dry and mute lips at the words. She has been given much in return. She was not made to avoid struggle, as has not a one of us, but I do not believe she is alone. God-like joy can be carried by even the most frail; in fact perhaps there it most meaningfully rests.


The Stuff That Matters

Awkward phase, month 4, day 9. Circa 1986.

Awkward phase, month 4, day 9. Circa 1986.

Back in 2012, I posted about a milestone. “Tomorrow,” I wrote, “My child begins middle school.” And now here we are with this: tomorrow, my child ends middle school. “You can do this thing,” I wrote then. “You can have a good heart and a ready smile, even in those ridonkulous gym clothes we had to buy for you emblazoned with ‘Exercise Science’.”

Her set of gym clothes lasted all three years, thanks to her dislike of actual sweating and probably owing in part to the B- she got in PE one semester in seventh grade. I almost wanted to praise her. Way to tell them you don’t give a shit, my dear. Because my child has always been quiet. Meek. Obedient. She cared when it mattered, to her future, and to her. One of the top two science students this year, her teacher said. Hell yeah. She joined the choir, the shy girl who can’t help but sing. We went steely-eyed clenched-jaw on algebra all year together, side by side on the sofa, me “reminding myself,” as I put it, how to do this stuff. We reduced and factored and squared together. She ended the year with an 89.9%. Her teacher called that a B+. We are shaking that off.

Her seventh grade language arts teacher couldn’t figure out subject-verb agreement in her own handouts. This pissed off my Inner Editor. Her math teacher that year didn’t show up one day. She was at Starbucks, my daughter said they learned, somehow confused about the day’s schedule. I think maybe we need a few more good middle school teachers. Her eighth grade social studies teacher professed so often to such an enduring love of the beautiful young eighth graders that we started to worry about the use of hallucinogens. Perhaps middle school teacher gigs could become like national service. One could earn medals for withstanding this age.

Back on that August day in 2012, I wrote, “Dear sweet holy holy Jesus unto heaven eternal, if you do anything for this baby in middle school, help her find the friends she will still be silly with in 30 years.” Did the good Lord oblige? My child was happy enough. She found her clique, girls with braces and good grades who coaxed her playfully at times: “Come on Sophia!,” with a grasp of the wrist. She was never bullied. I still remember when a group of girls called me a lesbian in junior high because I looked at them in the locker room. They told me I had body odor too, for good measure.

There are still Mean Girls, you can be certain, but the children all walk past signs around the school that say things like “Kindness Counts Avenue” and I think it sinks in, or sends it underground, and here’s what the holy holy Jesus unto heaven eternal did provide: he kept my kid off social media. Not a moment did this wee gal spend on any of it, and that’s akin to riding a higher plane of consciousness above the madding fray when you’re that age. Excellent call, dear baby. Well played.

Because kids still bully. They are still little assholes at this age. There are still eighth graders who look 20 (and, adorably, those who still look 9). Whenever she witnessed bullying or someone was obnoxious, I reminded my child that she was traveling through the very Peak of Human Cruelty. She was enduring three years of that merciless minefield in which bodies spring and skin sprouts and everything kicks in, out of synch, at once, and it makes everyone out for hurt.

“It gets better,” I might’ve said, but my kid didn’t really need that salve much. She grew tall and lithe and skipped the stuff I still find cringe-worthy from my own experience: the awkward hair, the awkward clothes, the awkward blue eye shadow, the incredible awkward vomiting in PE we must not forget (I. Threw. Up. In. PE.). Her bus stop had no drama; both years she took the bus, there was only one other kid at the stop. So there was no vomiting in PE and there was no perm, no braces, no leaking out of maxi pads, no zit cream, no handwritten notes tucked in boys’ lockers. She didn’t even use her locker, robbing herself of the junior high stress of rapid-fire recitation of locker combinations.

Instead my child asks me many questions. She became boss at launching “What if?” scenarios. She thinks. I feel as if she has saved her brain for stuff that matters. Last summer we spoke often about Gaza. She regularly catches herself in First World Problems. She can be crafty. She figured out how to play to a teacher’s preferences when writing papers — and her Tea Party social studies teacher gave her more than full credit, a shining A+, for Sophia’s staunch defense of the enduring importance of Second Amendment rights. Ca-ching. She reads people. She reads. She admires Malala. She admires Anne Frank. She discovered 1980s author Cynthia Voigt in a reading marathon throw-back throwdown that her ever-sentimental mama enjoyed.

So it was, in the end, fine. There was nothing to hate about middle school, save for those stinging, slicing subject-verb disagreements from that language arts teacher (language arts, for the love of God). It helps that now the egalitarian student council wears shirts that say “Bullying Stops Here.” It does help. We’ve progressed. My child got lucky too; the Gods of Jaws spared my kid the heavy orthodontia that plagued me at that age, and the Gods of Style spared her the permed hair fad I once embraced wholeheartedly.

And so we arrive at this day with this: getting better. Better for you than for me, dear baby. We talk. We will keep talking. She is nervous about high school, afraid of the Tiger Mom culture, afraid of a college admissions scene that feels rather stark and bleak for the kid like her: the sensible quiet girl who clung to her Malala book for two full months and who looked forward to playing with her baby sister’s friend’s baby sisters. But we will talk our way through it, shake it off when necessary, continue to humor preschoolers. We will hike. We will plan. We should perhaps hunt down and write a note of thanks to the girls who wanted to horrify me in that locker room twenty seven years ago: thank you but no, I’m actually not a lesbian.

We will travel. We will probably have to factor and reduce and square and now we’ll probably have to prove and reverse-triplicate and differentiate too, and we’ll shake it off when they call 89.9% a B+. We will do the things that matter. And this kid — now done with middle school, sweet holy Jesus — will care when it matters. To her. And I could not be more proud that the definition of “matters” is, to this young woman, a lesson in heart, a ballad to her place among many.


A mother’s look back


This is a reprise of an essay I wrote back in April 2009, on the one-year anniversary of my daughter’s diagnosis of Type 1 diabetes

One year ago this afternoon, my baby girl was sick. On and off, she had been fussy for days. Late in the afternoon on the 20th of April, she had vomited. I hoped for the random fleeting-sickness of early childhood. Twelve hours later, in the early morning, we awoke abruptly as she vomited again. And then, she slipped into something unfamiliar: sleepiness? That wasn’t it. It was lethargy. Eventually, non-responsiveness. Her breathing quickened. I remember the sight of her eyelids as I held her in my arms, still hoping for an explanation that would be treatable, something that would disrupt our lives for this day, this week, and then cure itself just like so many viruses, so many quirky kid bugs.

                There is a number when you are diagnosed with diabetes. That is all you need. A measure of blood glucose. It is a simple finger prick, a wait of some seconds, and then a number. 408. And then a rush, shock. For me, of course, who cries monthly, if not weekly, a steady stream of tears began that would not end for hours, as new sights and words urged them on.

                We rushed her ourselves to the children’s hospital. People stare at you, inevitably, when you walk speedily into an ER with that stubborn stream of tears and the baby who does not wake up. And then you yearn for an escape from the foreground, to be seated and anonymous, to believe that no one particularly cares what you’re doing and doesn’t attend to the message of your face. You wish for this: I want to just be, as everyone else.

                She returned to wakefulness the next morning. The nurse had promised it would be a long night. We will get through it. And then, after dawn, there was Gloria, awake, who pointed with a dimpled baby arm and declared, “Rice.” It was her word of the month back then, her catch-all proclamation, and of course I cried.

                And so, here we are, one year later, and I can’t help but reflect on that day. I have an imprintable heart, and I am not one to let dates pass without stirring their meaning in my mind. There is much to dislike about this day for me. My memories still feel young, and they have not taken pity on me yet, nor softened with any note of kindness. It saddens me to think that this is just year one of many, that there is nothing that recedes, there is no “getting better”, no past tense. I do not hope for a cure – there is nothing proximate about such an ending, so talk of a cure feels like folly to me. Neither am I on a journey, for that too suggests an end. Gloria is living her life. I am accompanying her. It is a maddening task, much of her phenomenology opaque to me. It is humbling, frustrating, unceasing. I repeat phrases: we have our good days and our bad days. More accurately, there are things that are good and things that are bad about virtually every day. I try. I have many five-second spans of concern when I wait for the results of a finger prick. Her blood sugar is too high. Her blood sugar is too low. Act. You miscalculated, overshot, undershot, almost got it, didn’t. I use faint praise too much: “decent”.

                I have to find something promising in this day. She is one year older. In that year, she has learned to talk. She has taken on the righteous outrage of the typical two-year-old. She plays. She feeds her baby dolls, puts on her own shoes, hones her toddler humor. She bops, grins, is still a fan of a good round of peek-a-boo. She has been to Disneyland twice, ridden a city bus to the county fair, gone on four camping trips, taken an airplane ride, discussed “Barracko Bama”. The reflection of her cuteness is no less blinding than it would otherwise be – I am overwhelmed by it, as I was and continue to be with my other two children. There are an abundance of moments for which I, like any parent, am grateful: when she rouses from sleep as I sit near her, and she murmurs, “My baby?” and her hand finds her nearby baby doll. She imitates my made-up songs, puts her head on my shoulder, pats my back. “Hold you!” she admonishes me, and I hoist her up another time, and she is back on my hip. I was never going to limit her, never going to sit down, never planning to stop encouraging her to enjoy the diversity of pleasures available for the grasping. Still, I resent everything about her disease, I resent our culture of sugar and of eating, and I resent the questions I have to ask myself every week: is she screaming or is that the diabetes screaming?

                So, we have made it to another April 21st, and it is a blessedly ordinary day. Memories will age, others will form. Eventually she will no longer fit on my hip, but her burden will remain. I am left with a lament known to many others: there is much, much – too much – that a parent cannot do


There is no memory of love


Soo and I met during our first year in college. We were dorm neighbors in that time most memorable: the first months away from home. I was barely 18, toggling between life stages, both kid and adult. My dorm room attested to this: on one wall, I pinned a koala poster; next to that, a print advertising an art show.

Soo was sweet and kind. She laughed well and often.  I admired her artistic talents, her effortless abilities with diverse media. A gifted potter, she made me a tea cup.

As often happens, time passed and we lost touch. When we reconnected, I was happy to see her side by side with Scott. His smile, frozen in a photo, matched Soo’s. The two were devoted parents to their two babies, a big sister and little brother.

I sent my daughter to spend a morning at Soo’s house early last summer, my not-quite-teenager needing some company for a few hours during her travels. My daughter taught the children a game she made up not long before: deciding if a described person was “real or fake”. Soo’s children jumped right in. Soo texted me a photo of her six year old’s handwritten scrawl: REAL OR FAKE?

Just over a month after that, Soo’s husband died suddenly.

An earlier traumatic brain injury had left him vulnerable to seizures, and one struck while Scott was swimming on a family vacation.

As another summer approaches, Soo and Scott would have celebrated sixteen years of marriage. Instead it has been almost a year now of soul-work of the most acute sort, the unquantifiable and unquenchable wrench of grief. Of loss.

Of the memory of love. Except that there is no memory of love. It knows no past tense. Their love was, and it is.

My parents, now 83 and 73 years old, both have dementia. Their common disability means that their interactions with each other are now addled by their confusion. Neither could report the season, much less the day. On a recent visit to their apartment where they live under my brother’s care, they both spent the entire time standing, shifting, pacing, as they together tried to decide when to leave for “home”. My father’s use of his same long-ago phrasing in his same long-ago inflection was striking. “I want you to be free to be who you are,” he told my mom, and then he shuffled, his steps slowed by the fact that he had removed his own shoelace entirely — and wrapped the lace around the locked front gate outside. I have been told that dementia patients are often looking for something — they just don’t know what. My father lamented, as he readied for this trip “home,” that he didn’t have his keys. My mother stared with little purpose or direction, just a sort of little-animal fright. “You’re the world to me,” he later told her, and she looked away, still searching.

This could be the sad, even pitiful exchange of two people who have lost themselves, two diseased individuals only lightly reminiscent of the thoughtful, well-read, well-liked people they once were. Or this could be all the truth that there ever needed to be in all the world.

In the earlier stages of her brain disease, my mother was at first like a trapped bird, wings flailing, pecking at the snare. Now she is past the battle, that storm quieted. This has all evolved with my father at her side, he too unable to reflect upon their situation, too distant to remember a detail of anything, too far into the pathology to generate my name. Yet he still knows that he is the love of her life, and she of his. He has forgotten what a remote control is for, but he knows that she is his center.

So while I might weep over the cruelty of a particularly trying disease, or steel myself against the declines that only continue, I might also be grateful that there is no memory of love. There is only love. And so for Soo as this most bittersweet of anniversaries passes, there is love. And in my parents’ side-by-side trials, their dual journeys most vulnerable, there is yet love. One can lose one’s understanding, one’s perspective on place and time, one’s stride or even one’s very life, but there is, assuredly, still love.