Posts Tagged ‘Alzheimers’

work // past

“You’ll get over him,” she whispered as she downed a shot of creamy, unfiltered sake. I’m not sad because of some guy, you twit, I thought as the 19-year-old waitress crouched down behind the sake bar with me as I sobbed. Something had set me off. Some movement of a plate or a gentle hand gesture, maybe it was the way that elegant woman had unfolded her napkin–something had unleashed the well of sadness that had been lingering just below the surface. I had turned from the table, plates in hand, a stream of tears falling from my chin, and silently slid down the wall until I was out of sight. I had planned on a quiet cry, just letting the sadness valve open for a short time–until I could find some way of plugging it up and getting back to work.

She offered me a shot, “If they don’t drink it, we shouldn’t just let it go to waste.” We had a policy of eating any untouched sushi and drinking any unfinished sake. “It’s not like they’re drinking from the bottle,” we’d told ourselves. “They didn’t actually touch the sushi. I mean, it’s on an entirely different plate. It’s totally not gross to eat off a platter of unfinished food,” we’d convinced each other. I didn’t have the energy to explain to her that I was mourning. Mourning my mothers slow decline into nothingness, watching her body finally decay the way I had watched her mind rot over the past five years–not the demise of some crush. I didn’t have the patience to watch as she attempted to grasp the seriousness of my situation, the weight of the truth. I couldn’t bear to politely nod as she fumbled around for some platitude that would serve only to make her feel better. You live in a bubble, I thought as I stared into her dark eyes, following the shine of her tightly pulled back ponytail, down her slender shoulders, over her perfect tits.

I was only a few years older than her but it felt like we lived on different planets. She, with her pressed black pants and heels, next to my threadbare Dickies and black sneakers–how did she wear those heels all day? We must have covered two miles during our 8-hour shift–not to mention all the bending down to place the bowls just so and the ginger to the left and the wasabi on the right and all the trekking back to the kitchen, carrying boxes of avocados and bags of shredded cabbage. I got a weekly lecture on how my shirts weren’t clean enough, “But, I washed them, I swear,” I lied. I had two shirts to wear to work, which meant if I worked 5 days a week, I’d have to do laundry twice during my workweek. I didn’t even have a car–I hitchhiked to work every day–how was I supposed to hitch (arms filled with dirty clothes) to the laundromat twice a week? Meanwhile, she looked like she’d bought a new shirt for each shift. I was fresh out of college–filled with sermons on feminism and class struggles, on systemic racism and the wealth gap. I had traveled Europe and the U.S., I’d lived outside our small town for four years and would never have returned had my mother not been dying. She was fresh out of high school, no desire to go to college, no desire to do much beyond wait tables and look beautiful. What a wonderful life, I thought, staring at her manicured hands. I’ll never feel that. I will never know what it’s like to be unburdened, to be young, to be free from responsibility.

“Yeah, he’s a real shit,” I said–creating the version of my life she could comprehend. “But, I’ll get over it, him, whatever.” I faltered. “Totally,” she said through her bright white teeth. “Now, let’s get back to work before Madame sees us!” She grabbed my arm, handed me another shot of sake and stacked my plates. “You’ll so find someone better,” she offered as a parting sentiment. “Yeah,” I responded. “Totally replaceable.”

 

in a parallel universe

I recognized it immediately–the gentle, familiar nudges and consoling words whispered in her ear. The way he held tightly to her arm and corralled her in the right direction. The way he looked up pleadingly, embarrassed, overwhelmed. The way she pulled away from him–dark, hollow eyes, seeing but not seeing, knowing only that she must flea–from what or whom she’s not sure, just that she must get away, from him, from herself from this confusion, from this dark, smelly place. Where am I? She must have thought, hearing the screech of the Q train in the distant tunnel. Who are these people? She must have wondered, feeling the staring faces of nervous strangers on her.

Did you ever see Defending Your Life? It’s a film about this guy who has never done a particularly good or brave thing in his entire existence. Therefore, he has to prove that he deserves entry into heaven. I think of that movie often. The way they played scenes from his childhood like it was a TV show. Intimate moments, fights, embarrassments. All if it caught on film. Well, the collective pearly gate “film reel”–for purposes of standing on trial to determine where you belong in the afterlife.

I thought about that movie today when I held a strangers’ baby while she battled her stroller, when I helped a woman get through the turnstile with her giant bags and scooter, when I co-carried a woman’s stroller up three flights of stairs, when I looked on and did nothing for the old man struggling to get his wife off the subway platform.

Couples kissing, homeless men shuffling, men in suits texting, mothers with children held tightly to their chests, but no one, not one single offer of help. Standing on the downtown platform I wavered. Run up the stairs and over to the uptown side, ask if they need help? Risk spiraling into my own darkness, risk offending, risk an empty offer if I can’t actually help to physically carry her out? As my train screeched to a halt, I watched the couple disappear. He’d managed to calm her, they sat side by side on the bottom of a dirty stairwell. Bodies piled alongside them, figures moving, but unmoved, seeing but not seeing.

What will those strangers’ movies look like when they’re defending their lives? Will they be reminded of the time they left two elderly humans to struggle on their own, two helpless, frightened people to fend for themselves? Or, will this play out only in my own reel? Because, I alone saw, I knew what I was seeing. And, yet, I boarded my train, I sipped my coffee, I got to work on time and lived my life.

memory

When I was little my mother used to play this game with me before bed. Most nights we were left to our own devices, my siblings and I–brush our teeth, put on our pajamas, read one book, turn out the light–but on the occasion that she was available for bedtime I would beg her to play our name game.

I really have no recollection of how frequent or infrequent these evenings were. They all sort of blend together into one singular experience. Me, lying face up under the covers, my mother hovering over me, sitting close enough that I can feel the warmth of her body against mine. It’s dark and I’m cuddling my favorite brown stuffed bear, or was it red?

“Good night, George,” she would say. I would stifle my laughter and shout, “I’m not George!” She would look confused, furrow her brow, lick her lips and look toward the ceiling. “Oh, you’re not? My mistake. Good night Marianne,” she would say. And, once again I would howl with laughter. This would go on for four or five names before she would finally settle on mine. “You are my daughter and I love you, whatever your name is.”

There were only a few moments when I truly felt my mother didn’t know me. They were during these seemingly random episodes of intense anger and fear–when, out of nowhere, she would look around and think that everyone was trying to harm her. She didn’t recognize anyone or anything, she didn’t know where she was or who she was. They wouldn’t last more than half an hour but they were traumatic and frightening events where I often had to elicit help from strangers because she would get so out of control. That marked the end of our outings to parks, restaurants, the movies–it was too risky to be alone with her in the car, impossible for me to restrain and carry her myself if and when she lost her faculties.

During these episodes I would try to soothe her–I would breathe deeply and make eye contact. I would hold her hands and hum and reassure her. I would remind her who I was and that she was safe with me. But her eyes were wild and her nails would dig into the undersides of my wrists, she would kick at me and curse, spit in my face and call me vulgar and nasty names. Words I had never heard come out of her mouth. Then slowly, slowly, she would come back to me. Her features would soften, her grip would release. She would smile and hug me and make jokes, hiding behind her large sun hat and marching around like a clown–as if nothing had happened–she would just come back into herself and any memory of the episode was gone. As if it never happened.

I would often think about our bedtime rituals after these episodes. Was it a game? Was she pretending at not knowing me just as she had done all those years ago? Was there some small part of her, screaming to tell me something, even as another part of her brain took over? Were the words she spoke and the words she thought the same? Did the actions she wanted to take get lost somewhere between her brain and her limbs–get reversed and scrambled and turned violent? Was there thought, was there understanding–or just instinct? Did she think I was someone specific or just someone who wanted to hurt her? If we weren’t in her favorite public garden, where were we? If I wasn’t me, who was I? But, these were never questions she could answer. The episode would pass and she would be docile again. Non-verbal and goofy, smiley and loving. As though her actions could express her every desire and emotion. Except when they couldn’t.

hell is a hospital bed in sacramento // past

“Take her to the hospital!” I shouted to the bumbling attendant on the other side of the too-white desk. “She’s really sick. Just take her, for god’s sake. You sent her to the fucking ER when she fell out of her chair. A distance of, like, one and a half feet.”

“That’s policy, ma’am. We call in every fall…”

“That can hardly be counted as a fall,” I interrupted. “She scooted off her chair. Whatever, I don’t care about that right now. She’s really sick now. I can’t believe you haven’t sent her to the doctor. She doesn’t sound right. She can hardly breathe, she’s not eating. What is wrong with you? She’s coughing but it sounds like something is stuck in her chest. She is NOT OKAY! Take her to the hospital!”

“Ma’am, I’m going to need you to calm down. If you feel as though she needs to go to the hospital, you can call 911. At your expense. Or, find a way to get her there yourself,” She said with steely eyes trained on my quivering lips. I could feel my pulse, my heart racing, my stomach turning. Why hadn’t I just borrowed a car? Why didn’t I ask my friend to wait while I checked on my mom before she drove off? I knew she wasn’t well. I should have come in to figure out what was going on before letting her drive off, leaving me–us, stranded.

“May I please use the phone?” I asked calmly. The attendant was whispering to another staff member. Why hadn’t we put her in a place with nurses and doctors? Why did we think she needed this make-believe, hotel-resort? It was a sham but it seemed like the right place at the time. All the nursing facilities were cold and too bright and too sterile. They smelled like shit and clorox. No character, no charm. This place looked like the Four Seasons. Fresh flowers, carpets, thick curtains and elevator music everywhere. Even a small, enclosed outdoor space where mom could get some sun, smell some flowers, look at the clouds. It seemed so perfect. It seemed so much better than the other places. It felt like the obvious, though regrettably most expensive, choice.

Now, it felt like a beautiful prison. A stupid, fucking facade filled with incompetent people doing whatever they were told. Nothing more. My mom was a body, a bed, a mouth, a dirty diaper. Nothing more.

“Hey, Rach? Can you come back?” I sniffled into the cream-colored phone, twisting the spiral cord between my fingers. “Yeah. I need you to take us to the hospital. My mom’s really sick and these assholes won’t take her.” The two women in white glared at me for a moment, then seemed to forget or lose interest and walk away.

My mom was frail by then. No more than ninety pounds. All five feet, nine inches of her reduced to nothing. She just looked at me. Pleading with her eyes. Sad, quiet. Spit pooling at her chin. She would cough and I’d tell her to keep coughing–pound her back, rub her chest–in the hopes that something meaningful would come out and the gasping would stop. It was just a long, never-ending string of spittle. I pulled at it and wiped at the creases of her mouth, holding the gooey drops in my palms. She was feverish and chilled and pale. Dark grey circles framed her giant, unblinking eyes. She looked like a skeleton. A shadow.

“Pneumonia,” the doctor had said after the chest x-ray. “It’s good you got her here when you did. It’s quite advanced. A lot of fluid in her lungs. And she’s dehydrated so we’ll start an iv immediately,” he explained. “Also, you’ll need to begin adding a thickening agent to her liquids if she’s going to be drinking on her own. It’s entirely possible she did this to herself, it looks like aspiration pneumonia.”

I pinched myself. Squeezed my fists until my fingernails drew blood from the soft skin of my bare palms. I felt the shame building in the back of my throat. Felt the tears pooling behind my lids. Fuck. I knew she was sick. I should have come yesterday. Or the day before, I thought. I should have been there. Why am I working these stupid shifts at the restaurant all day and the bar all night? What is it for? So I can pay rent for my shitty room in a shitty apartment in the middle of fucking nowhere? Meanwhile, my mom is dying sixty miles away. Why did I even move back? I wondered. What was the point. What good was I actually doing?

I laid down next to her in the stiff hospital bed. I pulled the white sheet up to our chins and played peek-a-boo. I fed her bites of hospital pizza and ate her rejected, drool-covered pieces. When was the last time I ate, I wondered. We turned on the television: daytime soaps and game shows. She smiled at me. “I’m sorry,” I whispered as I spooned small scoops of chocolate pudding onto her tongue. She licked at it, like a house cat and nodded in approval.

It took them five tries and three different nurses but they finally managed an iv. They only blew up her vein twice. Ballooned up and out into her skin, all blue and purple. I nearly fainted. I’ve seen a lot, I’ve been through a lot. But, I have never felt so immediately woozy. The fluids helped bring her back a bit. She let her eyelids fall, half closed. She rested her head on mine.

I am a terrible child, I thought. I let the tears slide, silently down my face. Let them gather and fall onto my chest. Let them pool and grow together. A salty pond to wade in, to remind me that I am not whole. I am nothing. I’m always a step behind, a moment too late. It’s never enough. It never will be.

hell is a hospital bed in brooklyn // present

“Grampa, Grampa!” the woman next to me screamed. “Can I come to your bed, Grampa? I can’t sleep.” Silence. Maybe it’s over, I think. “Grampa, please! Can I sleep in your bed tonight, Grampa?”

Her thin frame lay mostly exposed above the white sheet, her wispy grey hair like a halo. A frail arm reaching toward the wall, a bony finger catching for a moment on the ruffle of her diaper.  A wild-eyed look of terror and confusion, not to me or the nurse, but just to the world. I knew it well. I recognized it immediately.

“Please,” I pleaded. “I don’t think I can stay in this room.”

“Miss, we don’t exactly have extra rooms lying around,” My nurse quipped. “This ain’t the Four Seasons. You’re lucky you got a bed. Ever since LICH closed, this is how it is. How long you was in the ER, huh? Exactly.” She paused for effect. To let me know I was being a pest. I was ungrateful and probably not empathetic enough. “You lucky you in here. We gonna take good care of you. Now, just relax.” Her tone shifted, perhaps because she remembered I too was suffering. Maybe she could see the look of fear in my eyes, genuine, real, huge. She knew how the hospital functioned. Blood work took half a day, CT scans ordered ‘immediately’ took 14 hours, iv fluids–for a a thirty-something woman exhibiting symptoms consistent with dehydration–8 hours. “You’re gonna be just fine. Just lay back. Call me if you need anything, sweetie.”

She threw in the ‘sweetie’ as a trick, I thought. So I’d let my guard down and so I’d think she was my friend. I pressed the call button immediately.

“Yes?!” a very annoyed voice from a loudspeaker asked insistently.

“Hi, um, yeah. Is there, can I, am I allowed to eat?” I stumbled.

“I don’t know.” The line went silent. “Looks like…no. No eating.”

“I, okay, I”m just…” she was gone.

I lay there, alone, numb from the knees down, my bottom lip still curled and contorted. The stiff, white sheet scratchy against my bare thighs. The neon light humming above my bed. A blue-white glare, hard and intrusive. It’s high-pitched buzzing like a zombie-mosquito, incapable of death, so it drones on, attacking, sucking, blood-letting through the night.

Hospitals are supposed to be places to rest and recuperate, I think. This is hell. This is where people come to be tortured. To humble themselves, to be lowered so far down into the depths of self-pity and shame and fury that they will submit simply because they lose the will to go on. What’s the point? you find yourself thinking. And the next minute you are crying and screaming that you need to get out. One breath of fresh air, the feeling of sun on your skin for just one moment. But, they ask you to wait. To be patient. So you try to breathe and you try to stay calm but every moment in that room–that room with it’s incessant beeps, its flashing lights, its filthy thin curtain, a veil, an illusion of privacy–feels like an eternity. Doctors unannounced, waking you just when you’ve finally drifted off to sleep to deliver, nonchalantly, some upsetting news. To announce a diagnosis, to provide no context, no explanation of process. They give you a card, walk out and in comes another one. With a different title and a crisp new card. Another theory, another acronym. Scrubs come in and poke your belly with needles, they draw vial after vial of your blood with no explanation. Where is all this blood going? you wonder.  Voices drift in, stories of other patients with attitude, with too many requests, with some sob story. This is their workplace, you remind yourself. It’s only fair that they should be so casual. It’s natural. Except that people are dying here. And being born. And doing all of the business in between. And, it’s too hard to be reminded that life, outside of your own experience, is continuing without you. Rivers will continue to flow, trains will stay on schedule, emails will be answered, books will be written. And the exact placement of your body–growing or dying– in space has little to do with the order of the world.

 

an anniversary

The reality–that her death was imminent, unyielding to the tonics and colonics and healers and herbs, that turned her shit tarry and black, that made her vomit everything she consumed–took shape in my body, growing and multiplying, like a cancer slowly taking over every cell of my insides. It was physical, my pain. A churning in my belly. A small seed that grew and took form and had to be birthed or otherwise disposed of. But, it stayed. It stays still. Dormant, retreated, hibernating through winter. I feel this tiny beast in my throat, in my chest, behind my eyes, under my breath, in my balled up fists–veiled but not gone.

The thing about your mom dying when you’re 24, and getting sick when you’re 17, is that you miss out on that adult relationship that happens later in life. I’m not complaining, I got a lot more years than some people get with their parents.

But, I know so little about her life–who she was before joining a cult and having four kids. I know so little about my own childhood or her choices as a mother–how long did she breastfeed, how old was she when she first had sex? These conversations were just beginning when we started noticing troubling signs in her short-term memory and daily habits. It didn’t take long for all conversations about the past or the future to cease. Every day was just about getting through that moment, that hour. We reminisced a bit and read the newspaper to stay up on current events but she couldn’t hold on to much and she would become confused and embarrassed quickly.

My mother was an elegant lady. Elegant and refined and brilliant. Not traits you would typically expect from a cult-follower. You envision women who follow their male gurus without question–into illegal activity, into immoral actions, into a life of pain and confinement and hate–to be astonishingly simple and broken. Women who are looking to fill hollow, emptied out spaces in their bodies with the weight of pain and suffering–women who are consumed by trauma, looking to forget or run from something more awful than the reality they so willingly sign on to. Or else, women who are just too naive, too juvenile and too feeble to realize before it’s too late.

My mother was none of those things. She was a college-educated woman. She was studying Neuroscience before leaving to join a commune. She opened a women’s health clinic in Vancouver, followed the Beatles through Europe, lived for two years in India. She modeled in New York City and had dozens of close friends. She kept in touch with her family, traveled as much as she could and made an effort to look put together every single day. I can still hear the cla-clink, cla-clink of her heels on our wooden floors as she rushed to grab the phone. She read–early in the morning and late into the night–with a voracity and focus I have yet to see replicated. She was smart. Whip-smart. And yet…so confused and so lost and so misguided. Even before her disease took over.

“They’re after me,” she said one morning. I was home from college for the summer and spending most days with her.

“Who? Who’s after you, mom?” I asked.

“Them. They’re after my jewels. They’re taking everything. They’re not good people.”

At the time, I assumed her paranoia was just another aspect of her dementia. One more exciting side-effect of losing your mind. And it was, for the most part. But as it turned out (I discovered years later during an ebay search) they had ransacked her room. Taken her jewelry–giant amber beads from India, my great-grandmother’s delicate pearl necklace–and pawned what they could. When I confronted my father (who returned both aforementioned necklaces–but sold who knows what before I found out) he said it was to cover the cost of her living there. Which was confusing considering they had happily accepted my mother’s inheritance (which my grandmother gave up prior to her passing because we had no money and no options, my sister and I, so we went to her family looking for help) as payment for “housing” and “caretaking” despite the fact that she had been a productive–some might argue, the most productive– member of the community for 25 years and had never previously been asked to pay for room and board. And, didn’t that cover the cost? Then he said it was just so he could assess the “street” value of the jewelry but he had always intended to return the goods.

My sister handled the finances. I helped, but she was organized and efficient and incredible with the details. We were disgusted to be paying the community for what we felt she had earned after 25 years of service, of servitude. But, we had no other options at the time. Until we were so sickened with her care, or lack thereof, that we moved her into a home with a specialized (and locked) memory care unit. $5,595 a month. Her entire inheritance (minus the cost of her funeral) was gone by the time she was in the ground.

“He’s not a good man,” she’d finally said toward the end. Just before she lost all speech.

“No, mom. He’s not,” I’d acknowledged with such immense sadness and regret. Part of me wanted to lie and convince her that she hadn’t wasted her life following a man who couldn’t even be bothered to say a final goodbye when she was on her deathbed. I wanted to tell her her choices hadn’t all been misguided, that she had found meaning and beauty in her life.

But, all I could think about were the bruises on her wrists when I had come home from school one day, the red streaks on her jawbone after a misunderstanding with one of the other women, the fists pounding on her back as I screamed, “Please don’t kill my mom! Please!’ I remembered hiding behind locked doors, with pounding on the other end, the blacked out windows, and crouching under tables hiding from the cops who’d been called for the umpteenth time by the neighbors–which, it should be noted were half a mile away, but could still hear the screaming. I remembered running for the woods, memorizing escape routes, lessons in suicide, rantings of World War III. All I could see was years and years of of her wilting posture, hearing the screams and the “bitch, bitch, bitch” mantra of my dad’s diatribes. And I thought, this is good. It’s good that your illness has brought upon something real. Something true amidst all the make-believe. He was not good to you. He was not good to me. He was good to no one but himself.

And yet. Through it all. She was the most congenial person you’ve ever met. A ray of light through the blackest of nights. A positive presence even in the absence of hope. She was a problem-solver, a negotiator, a wily little thing who could get absolutely anyone to do absolutely anything. She had star quality. People wanted to be around her. She emitted confidence and tenacity. And, that smile. It could light up a room.

As my sister and I sang her Silent Night, she smiled up at us–as if to say, “I’m okay. I love you. Live and love and be happy.”–her eyes fluttered, half closed, face upturned, one hand in each of ours. She took her last labored breath. Exhaled, and died. Ten years ago.

I miss you every day, mom.

social expectations // past & present

I’m out in East Hampton teaching for two weeks. It’s a strange place. I haven’t spent a lot of time in communities like this. Seasonal. Divided. It must be very odd to be a full-time resident here. This insane influx of people and of money for three months out of the year. And then they’re gone. The shops close, the restaurants die down, the traffic (thankfully) subsides.

I went to Montauk once for spring break with a few of my college girlfriends. It was March in New York so, off-season. It was great. Gorgeous beaches that we enjoyed on overcast days in our hoodies. The ground was still covered in a light dusting of snow and there was only one open bar. The Point. I will never forget the morning after our shot-drinking, pool-playing night there. A dark blue Toyota truck rolled by us as we sauntered through the diner parking lot the next morning. “You girls were the hottest thing at The Point last night,” some mustachioed blonde said with what sounded like a southern twang. That was it. No hooting or hollering at us. No whistles or unwanted leering. Just a simple pronouncement and off they went.

The summer school crowd is made up of those who need remedial work in math or reading, students with special needs and English language learners. It’s a pretty wonderful group of kids.

Sitting inside, in an over-air conditioned classroom and looking out at the sunshine is pretty difficult. At lunch, we sit outside on the grass and play tag and hide-and-go-seek. We stare at the sky and pick up stray dandelions. We inspect nearby trees and wipe the oozing sap from craggy bark.

As I sat on our little peach blanket (which we started using at lunch because Kai was so genuinely terrified of bugs she couldn’t even set foot outside without screaming — a city girl if ever there was one) discussing for the third day in a row why a cereal bar is called a cereal bar despite bearing no resemblance to the breakfast food, I felt content. And, at ease. A feeling I rarely experience in the city. A sense of calm that is unattainable in a place like New York.

“Are you having a picnic?” a voice said from above us. It was a small, plump girl who looked to be about eight or nine years old. She had her long, brown hair pulled back into two low-hanging pigtails. She wore an ill-fitting pink, ruffled skirt and a too-tight white polo.

“Hello,” I said as I squinted into the sun to see her.

“Are you having a picnic?” she repeated.

“Carmina, you could say, ‘Hello. How are you?’ and then introduce yourself to them,” said her teacher coming up behind her.

“Hello. How are you? I’m Carmina,”

“Hi Carmina…”

“Are you having a picnic?!” she interrupted before I could introduce myself.

“Sort of. We’re all eating our lunch on this blanket in the grass. So, yeah. That’s pretty much a picnic,” I answered.

“You can ask, ‘Is it alright if I join you?'” her teacher prompted.

“Oh. Can I join you?” Carmina said as she plopped down on the blanket next to Kai.

“Sure. Please do,” I said with a smile. “Would you like some grapes? We’ve got plenty.”

“Yes,” she responded as her hand grabbed for a handful of green grapes which she quickly shoved into her mouth with a wide grin. “Mmmm.”

“Carmina, what grade are you going into next year?” I inquired.

“Um. I don’t know.”

“Fourth grade,” her teacher answered. “Carmina, you’re going into the fourth grade. Remember?”

“Oh yeah, fourth grade,” Carmina replied.

“Carmina, can you say ‘thank you’ for all the grapes? I’m sorry, is this okay? Is it okay that we’re crashing?” her teacher asked nervously.

“Of course!” I offered. “It’s wonderful to meet new people and make new friends.”

“Carmina, you could ask Kai what grade she’s going into next year. Or, what she’s doing this summer,” her teacher suggested.

Carmina obliged. She asked Kai a few questions. I asked Carmina a few about herself. Some of which she was able to answer, some of which confused her. We chatted while sitting in the warm sun, on the soft blanket protecting us from unwanted insect encounters and ate grapes.

It reminded me of so many encounters I’d had with my mom. She would approach groups of people and attempt to join their parties, sit at their tables, interject in their conversations. She had always been a social butterfly. Her habits were guiding her but her mind could not keep up. She would walk into these social situations and I would hold my breath. Never knowing what to expect. Would people see right away that she was a child? Would they be frustrated by her confused and confusing behaviors? Would they scoff? Would they say cruel things to her, or to me?

Mostly, people were absolutely lovely. Bringing me to tears with their empathy and compassion. Other times, I would end up running after my very perturbed and hurt mother because they hadn’t understood (or cared) that she was not functioning on an adult level.

I love working with children with special needs. I love working with older folks. I love babies and kids in general. It’s all the people in between who I find to be the most difficult.

a good man

I never met my grandfather. He died twenty-four days after I was born.

He was loved by everyone who knew him. Not just loved. Admired, revered.

He was a pastor. And, I suspect a very good one. Given the way people still talk about him. He had a fascinating life, as far as I can tell. Working as a staff assistant under Eisenhower, traveling the world as a missionary, eventually landing his dream job at Princeton. His portrait still hangs in his Alma Mater — a huge, gold-framed portrait in the Firestone library. He his smiling and gripping the handlebars of his beloved bike — complete with a wicker basket filled with books.

My mom, even at the end, would sporadically exclaim, “I love my father. He is such a good man.” When she barely had the language capacity of a two-year-old she would still mumble about her dad. “I love you, Dad,” I’d hear her whisper before bed. “Where’s Dad?” she would ask upon waking. Like a child eagerly awaiting the return of a parent who’d been away on a business trip.

She used to tell me stories about him. He was smart. Very well-read and well-educated without being arrogant or aloof. And, funny. The guy could really tell a joke. Or so I’m told.

My mother and her family lived in DC in the late 1950’s when my grandfather was working for Ike. Apparently, my grandfather grew bored of the long commute. So, he invented this game where you never stop at a red light. Sounds dangerous, right? Here’s how it works: You pay really close attention to the traffic lights. You have to be looking multiple blocks ahead. You can’t drive too fast or it won’t work. You watch for yellow lights. When you see yellow, you slow down. And then you slow down even more. You creep. You move at the pace of a 95-year-old woman with a cane. Never coming to a complete stop. Inch by inch, you keep the car technically “moving” until the light changes back to green.

I’m not sure how this game would work in the modern, fast-paced world. It’s one thing on those sparsely inhabited streets of the 1950’s. The game may not be suitable for the 2000’s. Just a hunch.

I’m not in too many cars. But, I do ride my bike. And, I do really hate stopping at lights. So, I use my grandfather’s game. I have the added advantage of being able to see the crosswalk. I know as soon as the red hand starts flashing, I’ve either got to excel and get through the light or slow way down so that I can coast until the light changes back to green.

It’s great fun. Sometimes I get weird looks and sometimes I’m inching into crosswalks and a bit into traffic before the light technically turns. Most of the time, it provides endless entertainment and makes me feel like I’m moving the whole time I’m riding. Makes me think about my mom and her sisters riding in the car with my grandfather. Giggling and rolling around on the back seat in their pressed, white, lacey dresses. All dressed up to play in the rose gardens. Loving their father and loving his game. It was a good childhood, I think. My mom’s and her siblings. They were happy. They had parents who loved them and who managed to keep loving each other all the way to the end. He was a good man, my grandfather. My mom was right about that.