teeth, minds, hips, cheeks

my teeth don't meet anymore. i can feel it. can no longer chew the skin of fruit and meat as satisfyingly. something about teeth forever shifting forward. molars eroding and gums receding from clenching all these years. i do it mostly when asleep. attempts to calm my jaw have met with some success. still, i can sense the tension in my lips and cheeks.

i see them coming, my son's seizures—a source of some anxiety. the omens are plenty: sun-staring spells. drops to the ground. bad balance. sudden manic tantrums. sour breath. pimply nose and chin and cheeks. fingers snapping madly. his own grinding teeth.

we met a friend wandering in yesterday's heat. he marched right up behind us on the knotty sidewalk, tried passing on the right. one-handed, i wrestled the squirrely stroller. my other hand held nellie's leash. the man's fine hair was tipped with sweat. though his cheeks were flushed, his face was peaked. far from home, he said he'd been running. it was nearly eighty degrees. friends for years, it wasn't clear he recognized me. he spoke a mix of non sequiturs and lucidity. when we reached our house, i offered him a glass of water. he rested on the green couch. calvin hugged him fiercely. when he was quenched we drove him home. a friend was waiting for him anxiously. on hot black asphalt, he waved and thanked us fervently.

while holding calvin in the wake of this morning's seizure, eyes closed, my mother came to me. for years she suffered alzheimer's. we lost her by degrees. my running friend awoke the memory of her. i recalled a photo of her in bed with baby calvin. as a girl i sometimes slept with my mother, my achy growing legs draped over hers, like calvin's slung across my hips.

breathing and cursing

When Elizabeth, a woman I’ve met only once but have known a few years, picked up the phone, my tears began to flow. I’d called a month or so ago, hoping she’d help quell my pain, worry and frustration about my son. I knew she’d understand because she has a child like Calvin of her own—Sofie—but also because I know, in part from reading her blog, that we seem to see the world and react to it in similar ways.

I wasn’t looking to Elizabeth for answers, only for her to lend an ear and perhaps validate my emotions and concerns. I used to turn to my mother, for one, when I succumbed to the gravity of despair. Mom always said in her loving voice, “No one can know how hard it is except for you,” and that was enough. But I lost my mother to Alzheimer’s, by degrees these past ten years then, finally, in early October.

It seems, too, that I may have lost a dear friend, a single woman with no children whom I've been close to for years. I'd called her last July in a similar moment of grief over Calvin, needing someone to listen, my mother long having become unable. Her voice was familiar, soothing and kind. Then, at one point she said something like: 

Christy, ever since Calvin was born you’ve been so angry.

She went on to talk about acceptance, and I questioned whether acceptance had to mean a denial or absence of anger. I asserted my belief that expressing anger can be healthy, even cathartic, and should be honored as one of our core human emotions right alongside joy and sorrow. She talked about the universe trying to find balance. Hearing this widely held theory, while appealing, offers me little consolation, the cosmos often feeling so much as if it tends toward chaos, albeit astonishingly beautiful nonetheless. After the mention of balance, we lost the connection mid-sentence. She tried to ring again but I didn’t pick up because I felt more disheartened than before I’d called, so she emailed me and began by saying:

you called today in a place we've all been and sometimes what we need is an ear, sometimes a distraction, sometimes an insight we didn't know we were seeking. 

And while I understand her meaning—knowing we all have our burdens to bear—she's never been where I am with Calvin. Still, I tried my best to be open to what it was she was saying, though I must admit I probably failed to hide my agitation. She ended with this:

my intent is unwavering which is simply to love and support you.

I replied:

i know. xoxoxo

I haven’t heard from her since. I wonder if she knows about my mother. I didn't contact any of my friends when Mom died—didn't have it in me. But friends and strangers soon learned from reading my blog.

A few days ago, when Michael, Calvin and I were in the throws of flu, seizures and sleepless nights, Elizabeth, Sofie's mom, wrote to ask if we could talk; she was in a hard place. I told her we were sick but that I’d try her over the weekend. I reached her yesterday and could hear her daughter softly moaning in the background.

For the good part of an hour we chatted about cannabis and a new strain she’s begun giving Sofie, one that has helped calm most of her seizures which were getting out of hand again. We talked about grief, frustration and anger, and about the parents who attest to graceful and patient caregiving of their complex, disabled kids. We marveled at such a feat, indeed wondered if it were truly possible. We joked about losing it when our kids' shit and food fly, when we fear for their lives, when their bleating becomes too much to bear, and when so much of our sleep is deprived (some call our condition PTSD, though in our case the P stands for Persistent). It seems we two, Elizabeth and I, are sisters in arms when it comes to our fleeting gracelessness and, at least for me, ceaseless complaints and pity parties with little restraint. We agreed that being able to get out our frustrations, at least by cursing, helps renew us for our endless duty to endure more. Because this caregiving of our disabled children and adult children who are non-verbal, incontinent, unstable and racked with seizures, is relentless and indefinite, the worry, fear and burden proverbial barbed thorns.

Elizabeth says to me, after I lament not being able to talk with her on the phone at the very moment of her most recent crisis:

I always know you are there breathing and cursing.

I smiled and chuckled as she went on to describe two tin cans connected by a string, as if we lived next door. If only.

Breathing and cursing, I mused. What a nice thought, and I felt much better when I hung up the phone.

Photo by Michael Kolster

rain, chalk and supernova

This rain is not enough to quench these parched lips, wash away the sorrow, ease the furrow in my brow. The thought of her gone—truly gone—haunts me with melancholic arcs, not so much for myself as for those who had to watch her struggle, then take her final breath.

Her place on the couch is hollow now, and I imagine her bed made smooth but without linens, slippers still tucked neatly beneath where her thin legs draped, their skin, like the rest of her, wrinkled like crepe.

A shell of a woman, she had held the sound of motherly seas in her voice, the way lapping waves mesmerize, hypnotize, and we clasped her diminishing form in ours like a burnished and beloved stone, put her in our pockets and carried her along.

Some ashes and a lock of white hair is all that will be left of the physical her, ashes that will look, sound, feel and taste no different than Dad’s. Like his, we’ll cast them back to earth and ocean to become something new.

I’ll still see her every day when I look into my son Calvin’s face. Hers is somewhere there; I catch fleeting glimpses. And when I do, I remember her great sacrifice, her many years swollen with child and laden with dirty cloth diapers for six, shopping and cooking and ironing and cleaning for eight, taking little to nothing for herself, no cup of coffee or glass of wine with a friend, no solitary stroll in the woods to escape.

This rain reminds me of when she’d cry in the shower; she told me it’s what she did to hide her despair. But it seemed she’d forgotten all that, the Alzheimer’s dissolving her memory and her bones into chalk, which if scrawled on a rainy sidewalk washes into one big galaxy of color, like some celestial body, or perhaps a glorious supernova outshining everything else.

Composite view of the Crab nebula, an iconic supernova remnant. www.jpl.nasa.gov

Harriette May Shake

I suppose the easiest way to begin is by saying that my mom died Saturday night—somewhat unexpectedly and yet not—in my sister Caron’s and my brother Matt’s embrace. Just a week earlier, she'd taken a fall and had broken her femoral neck—something I doubt she’d have done except for Alzheimer’s and its decade’s decay of her mind and body. In a San Diego hospital she underwent emergency surgery to replace the ball of her hip. The operation went well, so she was transferred to a skilled-nursing facility for rehab, but she developed pneumonia. It was touch and go back in the ICU, her vitals fluctuating wildly, while my brother Matt lovingly called to inform me of any changes in her state.

Like she'd done so many times before, we thought maybe she’d dodge this bullet, thinking that perhaps her fighting spirit and sheer zest for life would pull her through. But in the end it was just too much for her to bear and so we let her go. Mom was just shy of eighty-six.

My sister crafted a beautiful note to family and friends. In it she wrote:

As all of you no doubt know my Mom was such an exceptional and special person. She was kind, funny, beautiful, smart, curious, adventuresome, and sweet beyond compare.

My Mom was a tough and strong woman all through her life and particularly late in life living with Alzheimer's and fighting to stay strong throughout.  

Caron finished by saying:

At this time I don't know what the next steps are regarding my Mom, but I would like her to be remembered for all her inspiring attributes and let you know that after death she did one last commendable act, she donated her brain to medical research for Alzheimer's in hopes of finding a cure.

My sister-in-law, Matt’s wife Stacey, posted a poem she wrote on Facebook, along with a gorgeous photo of a cloud-laden San Diego harbor sky opening up to a spray of sunbeams:

She's in those clouds somewhere
I know
I heard them say, "Angel up"
when she had taken her last breath
no longer tethered to this earth
nor gravity's captive
"Angel up" I heard them say
She is now the moon, the constellations
and these clouds
Angel up.

Several times throughout her life, my mother told me of her desire to one day have a Viking funeral, to be set out to sea on a flaming boat, and to have this poem read. I hope I can be there when she finally sets sail:

Sunset and evening star,
  And one clear call for me!
And may there be no moaning of the bar,
  When I put out to sea,

But such a tide as moving seems asleep,
    Too full for sound and foam,
When that which drew from out the boundless deep
    Turns again home.

Twilight and evening bell,
And after that the dark!
And may there be no sadness of farewell,
    When I embark;

For tho' from out our bourne of Time and Place
    The flood may bear me far,
I hope to see my Pilot face to face
    When I have crost the bar.

—Alfred Lord Tennyson

I am no religious person, not one who believes in the God of scripture. But I think of myself as spiritual. And so, I like to imagine my mom, and my dad who died nearly twenty years ago, as swirling around in the cosmos as stars or moons or comets, meeting no resistance in their space, just gliding along and perhaps colliding with each other in one big beautiful, glittery bang. No pain. No fear. No worry. No constraints.

Harriette May Shake, November 6, 1929 - October 3, 2015

moon and mercury

There is the moon in a mackerel sky, staring down at me through gossamer clouds, the same moon illuminating the harbor masts not far from where my mother fell. It’s as chalky and round as the ball of a bone she broke, and the blood moon of the night before as full and red as her pain; perhaps its gravity brought her down. The surgeon cut below the break where he drove a metal spike, then fit a foreign ball into its joint. I wonder if she had an anesthesia dream.

As I glare skyward, I feel weary—all these years pocked with seizures, drugs and sleepless nights, counting them on calendars scarred with black and day-glo ink, splitting pills, pressing oils, weaning meds. My skull is full of woes of my mother's Alzheimer’s, my brother’s Parkinson’s, of friends’ children’s epilepsy and all the layers of senseless suffering in between for which no grand design exists, and if it does, it's sick.

The children, some huddled near my feet, ask after Calvin, tossing me epilepsy questions, pondering the mess of his pain and disability in classrooms mostly healthy, white and neat. Some of their faces are masked in fear and sorrow while others beam with enlightenment and hope. I tell them they can make a better world if only they'll embrace difference as much as things the same.

Dipping my lips in the sweet burn of bourbon, the moon and the mercury work their gravity sweeping my boy toward an epileptic fit. Outside, the storm rolls in, the mercury falls, its heavy chrome-like beads running into one thin strip. Finally, the sky swells and the rain thrums unrelenting, soaking withered leaves, quenching parched ground and bark. It reminds me of how, on the night of the blood red moon, I cried for the first time in weeks.

Photo by Michael Kolster

missing this face

I am missing this face today, and the mind behind it which, because of Alzheimer's, is slowly dissolving like a cube of sugar in water. Still, the essence of my mother remains, though not so much in her watery eyes but in an aster's bright reminder of her favorite color, in rose water's faint and sweet scent that calls to mind her mild skin, and in her smile, which I see clearly in Calvin's face on days when he is feeling good.

the trouble with epilepsy

In the nine years since Calvin was diagnosed with epilepsy, I've been reminded of my childhood friend Debbie's firstborn daughter, Kelli, who suffered from a severe case of epilepsy since infancy and who died from complications at the age of fourteen. I've learned that another childhood friend's niece started having seizures at the age of five as the result of a brain tumor. I've also been informed that my mother's uncle had epilepsy, my cousin had nocturnal seizures, and Michael's cousin once-removed has epilepsy.

In these nine years I've been told by a couple of my former swim teammates that their sons had seizures, one of them dying from SUDEP (Sudden Unexplained Death in Epilepsy) when he was in his early twenties. I've met scores of mothers and fathers whose children have seizures monthly, weekly, daily and who suffer terrible gashes on their foreheads, cheekbones and noses from falls during seizures. I've met a mother whose fourteen-year-old son drown while having a seizure. I've come in contact with mothers who blog about their children's seizures, the ills of the anticonvusants used to treat them, and of the promise cannabis holds for people with medically refractory epilepsy.

In just the past year a friend with an immune disorder began having comorbid seizures and another dear friend told me just this weekend that her young son was diagnosed with epilepsy. I've learned of a long list of celebrities who had or still have epilepsy and of others who had or have family members with the disorder: Neil Young, Susan and David Axelrod, Margot Hemmingway, Danny Glover, Jason Snelling, Jim Abrahams. Susan Boyle, Prince, Hugo Weaving, Florence Griffith Joyner.

While visiting my mother a year ago and sleeping in her bedroom in order to help get her to the bathroom safely, I was convinced she suffered two, short grand mal seizures in her sleep, the familiar rhythmic rustling of her sheets a dead giveaway and seizures often being comorbid events in people with Alzheimer's.

The trouble with epilepsy, besides the seizures themselves and the drugs used to treat them, is its prevalence. It would appear that no one is immune. Its victims are fetuses and infants, toddlers and teens, young adults and the elderly. It can strike the healthy and the infirm and can arise from head injuries, vaccines and viruses or simply seem to appear out of thin air. It claims men, women and children, rich and poor, black, white and brown. Epilepsy knows no boundaries. It is a taker of all that is most important to us: our well-being and that of those we love most.

caregiver woes

Of recent, when speaking to my mother on the phone, I sense her fading away. These days, she rarely responds to Mom, but rather to her name, Harriette. My brother Matt, who cares for her, hasn’t called her Mom in years. Sometimes, she becomes silent on the other end of the line and I know she is weary of conversation, and so I must simply hang up.

Our conversation the other day got me to thinking whether or not Calvin knows his name. When I call his name he doesn’t respond, doesn’t look at me, doesn’t register in any way, is silent on the other end. Ours is a relationship of cues, physical and verbal. Often, I sing to him or click, whistle, tweet, hum or otherwise make silly sounds. We spend much of our time together hugging, and I shower the boy with kisses and raspberries whenever he’s in my embrace. Though Calvin is eleven, developmentally he is still much like a baby, mouthing his plastic toys and playing with them like an infant might. Michael tells me Calvin will not be much different in years to come. I think he’s probably right.

While watching my son, I thought about my mother again, thought back to the conversation I had with two of my four brothers and my sister regarding her care.

“Remember,” I said to them, “if Mom stops eating or drinking, don’t force-feed her or push fluids.”

I went on to explain what my mother-in-law, a former Hospice nurse, told me: that, when it comes to someone with Alzheimer’s, the refusal to eat or drink marks the start of the dying process, rendering digestion and intake of fluids uncomfortable, perhaps even painful, for a body that is shutting down. I recall my mother not wanting to get to this stage, the stage where she doesn’t really remember us, except fleetingly. But, under the care of my brother, she has managed to stay mostly upbeat and still loves life. At eighty-five, I hope she goes quickly in the night before she’s consumed by fear, confusion and panic, all hallmarks of late-stage Alzheimer's.

While bellying up to the bar the other night with Michael, I was doing my usual worrying about Calvin. He’d had a bad fall recently at school—landing square and hard on the back of his head—his balance and consistency, though improving, remaining precarious at best. I wonder about the future of his care, wonder if he’ll live with us until we are too feeble to carry on. I worry that no one else will love him the way we do. He’s a cute, affectionate little boy now, but what will happen if or when he becomes a man? What will happen if we’re not around? I’ve had fugitive thoughts about taking him with us when we die, just so he won’t have to suffer neglect or abuse at the hands of strangers who exploit the vulnerabilities of the disabled. I worry about who will give him his seizure meds on time—morning, noon and night—and if they’ll give him the right amount. I worry about who will make his cannabis oils, who will care about the side effects of the meds, who will change his diapers, shave his face, give him water, feed him, know when he is hurting, cuddle with him when he gets injured or feels bad. These woes are enough to last a thousand lifetimes, yet worrying won’t extend my life even one day. The best I can do is to love him and to click and clack and smooch and smack my lips against his pretty skin, like my mom did with me, and still does to this day, even when names escape her.

Mom, Calvin and me, December 2005 Photo by Michael Kolster

crossroads

I can barely talk with her anymore. It's clear, on most days, that once she figures out how to use the phone she usually doesn't know who is on the other end. She's distracted, can't answer most questions and sometimes she simply disappears. It's what's happening to her. She's disappearing, dissolving really.

I'm struck by the fact that my son and my mom, who are seventy-four years apart, are meeting at a crossroads. While Mom is losing her ability to communicate, Calvin seems more and more present and responsive, though I doubt he'll ever talk, his brain's open window to speech likely having closed soon after he began having seizures and having to take so many drugs. While Mom is gradually losing her ability to walk, at this point shuffling and taking baby steps, Calvin is walking more steadily and with less assistance. More and more my mother is being spoon fed, while Calvin's body, as we reduce some of his medicines and increase his cannabis oils, is calming down enough, perhaps, to some day use a spoon again. Both of them require a spotter standing behind them on the stairs, my mother becoming more feeble, Calvin gaining strength.

Mom and Calvin are like two ships passing. They met briefly, but have continued on their paths, each trajectory opposite of the other, while I stand in the middle watching, vastly unable to affect either course except to embrace it, and hope for them a soft landing.

two peas in a pod

Tuesday 7:00 a.m.

I’m sitting here in Newark airport sipping coffee during my three-and-a-half hour layover after having taken the red-eye from San Diego. Michael’s phone call came in just before seven a.m., startling me out of a dead sleep that I managed to get with the help of some ear plugs, the puffy jacket Macauley gave me and two padded airport seats facing each other. Calvin had done the dreaded thing and vomited his morning seizure meds, so Michael had redosed them. A few minutes later Michael called telling me he vomited again.

At the exact moment my eighty-five-year-old mother had been ramping up to have another panic attack at home in San Diego, shortly before I kissed her goodbye, my ten-year-old son Calvin was having a seizure back in Maine. Mom managed to dodge the bullet. Calvin was not so fortunate and had a second seizure several hours later, then a third and possibly others.

Back in San Diego I had learned that my mom’s panic episodes have been occurring more frequently, perhaps the result of what we think was a November stroke, perhaps simply because that’s how Alzheimer’s rolls. During these events Mom hyperventilates, seems overly confused about where she is and disturbingly cognizant of her fears. I'm told they happen when she’s had too much stimulation: lots of activity, looking at photos from her past or at pictures on the computer—perhaps even Skypeing. They are heartbreaking to witness. Yesterday, I’d taken her to the park twice for a change of scenery, to get her blood and lungs moving and to keep her body in the best shape possible to avoid a fall. And, since we can’t leave her alone in the car anymore, I’d also taken her into a convenience store to pick up a few supplies. My visit, in and of itself, might have been enough to trigger an attack.

Calvin's seizures are triggered whenever he gets sick, even the common cold can induce them. With the help of two cannabis oils—one CBD, the other THCA—we’d managed to keep the seizures at bay for twenty-one days even though he’s been sick with one virus or another since before the holidays. But his little brain and body finally succumbed to the winter assault, and he crashed last night.

Tuesday Noon

Finally arriving home just before noon, having been shuttled from the airport by Lucretia and her husband and after being smothered with kisses from a very excited Nellie, I enter Calvin’s room just as he is waking. Michael, who is there sitting in the dark with the shades pulled, gives me a warm welcome. He tells me Calvin has been waking, crying, vomiting and falling back to sleep every fifteen minutes since morning. I turn to Calvin and see his eyes rolling up into what looks like a complex partial seizure. Fearing it will turn into a grand mal, and this being at least the third in a cluster, we lift him out of bed and onto his changing table where I give him the Diastat rectal Valium. Slowly, the color seeps back into his lips and pale face, his eyes relax and just before he falls back to sleep I give him his afternoon seizure meds in a spoonful of yogurt. This time, he keeps them down.

It's not quite 10:00 a.m. in San Diego, so Mom is still asleep. She sleeps a lot lately, probably because of all that ramping up mania, like Calvin before a seizure. I slip in next to Calvin as he sleeps and I remain there much of the day while Michael cleans up and walks Nellie in the bitter cold. When I kiss Calvin's head I realize it's the same way my mother kisses me, and I think of how similar they've become. They're like two peas in a pod, I think, my mother and my son, snuggled securely into their little husks of lives—small, sweet, green and alive.

Calvin and Mom, February 2005

essence of my mother

Last night Mom was wired. It was as if she’d taken the wrong medicine, too much of one or none at all. At times she was speaking in full sentences, though not making any sense. I think, perhaps, she was seeing things that I couldn’t see. She was amped, but not unhappy. She’d stitch together a few words, pointing this way and that, clap her hands, punch the air a time or two with a growl, then turn to me and ask, in a semi-coherent way, “Does that make any sense?” At one point she asked me if she was crazy.

“We’re all crazy, Mom, especially him,” as I pointed to my brother Matt. She smiled and laughed in agreement, then squeezed my leg, kissed my cheek and rested her head on my shoulder. Later she turned to me out of the blue and said, “I'm not sure you know what you are doing.” I chuckled, thinking she might be right.

All day long I’d had a nagging headache, perhaps from too much coffee or not enough. I abandoned my evening bourbon hoping that might help but it seemed to make me feel worse. I went to sleep with the chills and woke at midnight sweating. As my head pounded I thought about how Mom must feel at times and wondered if her panic attacks are in any way painful, wondered if they were Alzheimer's-induced or drug-induced. I thought about Calvin and worried about his benzodiazepine withdrawal symptoms, which at some point he’ll have to endure again, and which I imagine include nasty headaches and behavioral changes. I remembered my dad and the pain and nausea he suffered from bone marrow cancer and chemotherapy, and how the morphine stripped him of his essence.

Mom’s essence survives in her tiny, eighty-five-year-old, 115 pound self. Though it is dwindling and sometimes fleeting, I can see it in her eyes, feel it in her embrace, see it in her smile, hear it in her laugh. I'm leaving Mom tonight and, as always, I'm experiencing a mix of emotions. I'll hate to say goodbye knowing it could be the last time I see her, but I'll be relieved to get back to my family and to my usual routine. I'll miss the warmth of San Diego, my long walks along the flowering waterfront, miss sitting next to Mom for hours holding her hand, but I'll be glad to hug Calvin, kiss Michael and take Nellie for long walks in the fields. I'll worry about Mom and Matt and Stacey and wonder when I'll  be able to (somewhat) easily return. But at least I'll have had a handful of days basking in the essence of my mother, knowing that image will be lasting, if not in her then hopefully in me.

parallels

I’d just returned from walking my brother's dog Sadie along a narrow strip of beach skirting San Diego Harbor when Mom arrived home with her caretaker Stephanie after their usual drive around town.

“She’s having one of those again,” Steph said, as she helped my mom out of the car.

I opened the courtyard gate to see the shell of my mother pale and trembling with a fretful look on her face. Gesturing to Steph, Mom said in a worried, feeble voice, “Thank God for this woman. She takes such good care of me.”

I wrapped my arms tightly around Mom while Steph went to get a pill, then I helped her down the steps into the courtyard over to the bench so she could sit, and when she did she kissed my hands all over and thanked me profusely for taking care of her.

“I want to go,” she said in a panic, and I wondered, where? “Will someone please take me home?”
“You are home, Mom,” I assured her.
“How do you know?” she asked, and I wasn’t quite sure how to answer but by saying, “you are right here with me.”

We sat for a bit, Mom hyperventilating and shivering in my embrace. She’s so small, I thought, half thinking that she'd melt into nothing right then and there. I wanted to cry, never really having seen her in quite a state and remembering, when she'd first been diagnosed, she had made it clear that she never wanted to get to this point.

Steph brought a pill meant to calm her, which I put on Mom's tongue like I do for Calvin at times, and she chased it with a big gulp of water. My cell phone rang in my back pocket. It was Calvin’s nurse Beth calling from home. I had to take the call but I hesitated letting go of my mom.

For the next ten minutes Beth and I discussed Calvin's telltale signs of an impending seizure. He had woken at 3:30 am and had never gone back to sleep. He hadn’t had regular bowel movements for days, had developed a rash on his chin, was hyper in the bath, had a runny nose and was stuck in a finger-snapping trance. At times I could hear him shrieking in the background. Beth wanted to know what to do about his bedtime cannabis oil. Together we mulled it over, taking into account his relatively low dose of CBD (cannabidiol) along with the fact that we’d just increased it five drops last Monday under similar circumstances.

“Michael thinks he’s amping up, too” she added.
“Well, if we increase it by only five drops and he has a seizure tonight, we’ll want to increase it five more tomorrow. So maybe it's better to increase it by ten drops tonight in hopes of thwarting a seizure. It can't hurt him,” I added.

After hanging up with Beth I joined Steph and my mom back in the kitchen. Mom had calmed down some and was eating. The pill seemed to be working.

“I can see them coming,” Steph said, explaining that when Mom doesn’t nap during car rides, she often ends up having an episode.
“It’s the same with Calvin,” I replied, describing how when Calvin wakes early and doesn’t go back to sleep he almost always has a seizure the next night or morning.
“So many parallels between them,” I added.

Stephanie left for the day and I put Mom down for a nap. Tucking her in I gazed at her watery brown eyes which, like everything else about her, look smaller to me now.

"There's my baby," she said with a smile.
"You know who I am," I told her, aware that she couldn't recall my name.

After her nap we took a drive to Shelter Island for a walk in the park at dusk. Though beautiful, the trees there are knotted and tangled reminding me a bit of my mother's brain, of Calvin's brain. Mom shuffled along as I held her hand and elbow. I thought about my neighbor friends Woody, 81, and Mike, 92, back at home and marveled at how aged Mom is compared with them. Darkness quickly fell around us and we found a bench at the water's edge and snuggled in like two lovers against the chill. We were mostly alone in the park when a man wearing a hoodie hobbled past tapping a white cane against the path. I greeted him as he approached.

“So cozy,” he said in a happy Jamaican accent, “I can see.”
“Do you know him?” Mom asked in a moment of clarity.
“No, he's just a nice man passing by.”

Back at home Matt and I tag-teamed with mom during dinner then helped her get ready for bed, not unlike Michael and I do with Calvin. So, too, Matt encourages Mom to do as much as possible by herself, even when simple things like washing her hands or getting undressed can sometimes be difficult or confusing. After we got Mom settled, after I stroked her head and told her that I loved her, I gave Matt a hug goodnight and thanked him for taking such good care of Mom.

“I don't know how you do it, Matt,” then I paused for a second and added, “well, actually, I guess I do.”

san diego sunrise

Last night, at 10:00 pm, I took a cab from the San Diego airport to my brother Matt’s house where I was greeted with a hug and then a smooch from his dog Sadie. My brother’s wife, Stacey, is visiting her sister in the Seattle area while I help Matt with my eighty-five-year-old mom who has Alzheimer's. After a brief chat with my brother I lugged my bags to the upstairs guest room. There, on the dresser, was a care package that Stacey had left me. It included a card wishing me respite, a bottle of seven-year-old bourbon and a crystal glass with which to drink it, a miniature pewter motorcycle tied with twine and slung around the bottle’s neck, a bar of caramel and sea salt chocolate and a silly book called Stuff White People Like. My sister-in-law definitely gets me.

This morning, after a restful night, and as the sun rose over San Diego Harbor, I thumbed through the book, at times chuckling over the author’s satirical list of 150 things that white people like. Here are some of my favorites:

Standing still at concerts
Religions their parents don’t belong to
Farmer’s markets
Wes Anderson films
Asian girls
Yoga
Marijuana
Having two last names
Gentrification
Renovations
Knowing what’s best for poor people
Bottles of water
Multilingual children
The idea of soccer
Music piracy
Scarves
Premium juice
Public transportation that is not a bus
Rock climbing
Gifted children
Acoustic covers
Plaid

After flipping through its pages I realized the book might have been better titled Stuff White Yuppies Like. Still, it made me laugh at myself and at the absurdity of it all—that being the truth. At the end of the book is a score sheet labeled How White Are You? My score was a mere thirty-four percent. Praise the Lord.

As the sky began to brighten I stepped outside on the balcony with my camera. A foghorn sighed in the distance making me pine for my former home, San Francisco, which I haven't visited for nine years. Watching the sun come up I imagined my mother snoozing in a downstairs bedroom and wondered if she'd recognize me. I hoped my brother was doing okay and relished my sister-in-law's kind gesture. I felt a headache coming on in the absence of caffeine and wondered if Calvin had had a seizure last night. I toyed with the idea of eating the chocolate bar for breakfast, regretted not having been able to get the bottle of bourbon open last night, then considered going back to sleep just as the sun cleared the horizon, like a big bald head.

this morning's sunrise over San Diego harbor

leaving on a jet plane

Today I am headed west to visit my eighty-five-year-old mother in San Diego where she lives with my brother and sister-in-law. For the past several years I've traveled to see her every six to twelve months, and each time I am torn about going. On the one hand, I miss my mom, who is dissolving by degrees in the grips of Alzheimer's and whose essence I hope I'll still find. I miss California and the Pacific and the warmth of the West and I miss having even the slightest bit of respite from the daily grind here at home. On the other hand, I'm going to miss these guys. In fact, I already do. I'll miss Michael's jokes and his quick-to-forgiveness, miss his embrace, miss his handsome face. I'll miss watching Nellie frolic in the snow, miss those big brown puppy-dog eyes and soft, fluffy hair. I'll miss Calvin's hugs and giggles and the way he likes to sit on my lap now after so many years of being too hyper to do so.

But I won't miss the Maine winter, its ice and snow and subzero temperatures, won't miss cleaning up messy diapers full of oozing poop that sometimes, somehow, gets smeared all over Calvin's entire back and down his thighs. I won't miss Calvin's drooling, and his teeth-grinding, eye-poking, slipper-biting, carpet-munching, hyper-coughing, whiny-ass self. I won't miss waking up all through the night or the ungodly morning hours, the chopping up of Calvin's food into tiny pieces, the obsessing about seizures and all things Calvin or my grumpy-ass mood, which I hope to abandon on some sunny beach or grassy seaside park.

As I put Calvin on the bus this morning, in minus-nine-degree weather, I gave him a big kiss and got a bit teary eyed.

"Bye Calvin, I love you," I said as always, then added, "I'm so proud of you, sweetie."

As the bus pulled away I watched Calvin pat the window, completely oblivious to my lingering. A twinge of sadness came over me in knowing that my boy has no idea I am leaving, that I won't be there when he gets home or when he wakes up tomorrow morning. There's a hollowness in that knowing, one that never can be filled.

Yep, I'm leaving on a jet plane in a few hours, heading toward blue skies, sixty-degree weather, sandy beaches, restful nights, late mornings, mom's embrace and quiet. Here, it has warmed up to minus-three degrees, so I guess it's time to take Nellie for a walk before I begin to pack my t-shirts, jeans, tennies and flip-flops, and a photo of Calvin that I'll keep as a bookmark and gaze upon, often, with longing.

underwater

If only I could breathe under water I'd dive in and drink the liquid like sky, stay under for a spell drenching myself in the cool dark spaces that lurk at my feet. Then, I'd ride the thermals in a deadman's float, my fingers and toes trailing through the reeds and silt making marks like claws.

Underwater I'd forget about my son's seizures, his screaming spells, our sleepless nights, my exhaustion, worry, angst, dread, fear, my despair. Underwater I'd drift alongside smooth wooden boughs, and let myself get caught in beautiful eddies, but only for a while. Somehow, there'd be music down there with me, marimba for sure and perhaps velvety brass and some strings, happily pinging away as I pass over rocks and between sunken trees that look to me like ghosts or skeletons or both. And from that music I'd cry invisible tears.

Perhaps I'd come face to face with a catfish or an eel. Maybe we'd kiss each other in solidarity of life's hardships, hers from the hunger and the hook, mine from the messed-up brains of my son and my mother, both of which tug and tear at me until I'm raw.

I read this to my husband and he tells me how strange it is that when he took this photo he watched a large fish serpentine its way against the current up the channel. I'm swimming upstream, I think, and have been for a while. Good thing I'm a strong swimmer, the water being my second home. I know when to fight it and I know when to give in and simply let it take me under, if only for a spell.

Rio Grande, photo by Michael Kolster

i'm not a doctor, but.

Written by Elizabeth Aquino in her blog a moon, worn as if it had been a shell

International medical guidelines recommend the use of benzodiazepines as treatment for anxiety disorders and transient insomnia, but caution that they are not meant for long-term use, and should not be taken steadily for more than three months.

Melissa Healey, The Los Angeles Times

September 9, 2014

This is not going to be a post where I attack the use of benzodiazepines, despite my belief that they are horrible drugs, perhaps helpful in some ways but whose drawbacks far outweigh benefits. During the last couple of days, there have been a plethora of articles about their drawbacks -- scary drawbacks -- particularly as they are often blithely prescribed to patients with not just severe epilepsy but also garden varieties of insomnia and anxiety.

This is going to be a post where I deride the position of some neurologists who are actively blocking some families' pursuit of high CBD oil to try to stop their children's refractory seizures.

I've always hated the expression I'm not a doctor, BUT. I won't go into why I hate that expression, but I will state here that the only authority I have to "report" on the effects of benzodiazepines is the nineteen years of experience I have giving them to my daughter. At four months of age, approximately one month after she was diagnosed with infantile spasms and in the middle of unsuccessful high steroid treatments that were injected into her body, we were instructed to add nitrazepam to her regimen. Nitrazepam was only available through what's called compassionate protocol as it wasn't then approved for use by the FDA. We dutifully picked the drug up from the hospital, cut it into quarters with a pill cutter and crushed the infinitesimal piece to a powder that we dissolved in water in a baby spoon and placed in our baby's mouth. Nitrazepam helped somewhat to stifle the seizures, but it by no means stopped them completely. The side effects were drowsiness and irritability, as well as strange fevers that came and went. We added three more drugs to the regimen in the following six months and began a weaning process of the nitrazepam that landed up taking nearly two years. Sophie's seizures kept coming, and over the next ten years she'd be put on Klonopin which made her anorexic and didn't stop the seizures and then, finally, Onfi which we're in the process of weaning. At last count, we have tried 22 anti-epileptic, and none have been successful. I can honestly say that it might take years to get her off of Onfi alone, and given the six-plus years she's already been on it, I can't begin to imagine what the long-term effects of it have been, particularly when I read the articles that have been steadily coming out of late.

I've discussed ad nauseum (most recently in my mini-memoir) the moment when I knew Sophie's esteemed neurologist had no idea what was going on or how the combination of drugs she was on as a nine-month old baby were interacting. If I were Oprah, it would have been the What I know for sure moment and what I knew for sure was that the whole situation was fucked up. I'm going to use profanity there because it's entirely called for and there are no other descriptors in my mind for just how dire the situation was and continues to be for countless children with epilepsy.

Now I'll get to the point of this post which wasn't to bash benzos but to bash those in the medical world who continue to obstruct families' pursuit of high CBD oil. I know of two instances in southern California alone where prominent neurologists have actually reported mothers I know to children's services for going against their doctor's wishes. There are countless anguished reports on social media of families butting up against their doctors regarding CBD oil despite those children being on multiple drug regimens with no relief of constant seizures. It's madness, and it makes me furious. I can't figure it out. I think about it all the time and wonder why? Is it ego? Is it hubris? Is it jealousy? Is it the way our doctors are trained? Is it our culture? Yes, I realize that "we need more studies," that research is necessary and that the traditional scientific method of testing is good practice, but what the hell?

Do you think giving my four month old baby a powerful benzodiazepine along with two other drugs was something done with confidence? Had the long-term effects of that particular combination been studied rigorously? Do you think the woman who called me the other day and told me that her kid was on five anti-epileptic drugs (three of which were only recently "approved" for use) and couldn't get her neurologist to cooperate with her wanting to try CBD is unreasonable?

I think it's madness and is only furthering my latent animosity toward the medical world. I want to be a builder of bridges. I want to improve communication between patients and doctors. I want to help break down the disconnect, but I find it increasingly difficult to do any of these things. If I were in a more measured mood, I'd craft something more particular and to the point. Instead, I'll resort to bad language, to using the word clusterfuck, to wonder about Sophie's increased chances of Alzheimer's Disease now that she's been on mega-doses of benzos for most of her life, to wonder what that would exactly mean for a person like herself. I'm not a doctor, though. I'm a writer and a mother, and my weapons are language and love.

photo by Michael Kolster

relics

Perched on an unfinished shelf above Calvin's bed are a dozen relics that he will likely never regard or understand. For me, however, they hold memories, a handful of images within each one—a meaning, a smile, a loss.

Some are photos from my Grandma Shake's trunk, the one that, after she died, my father told each of us to sort through and choose what we wanted for our own. I chose a rosary for its beauty, a handful of photos and a small red velvet album in which she'd written quotes from Emerson, Longfellow, Confucius, Mohammed, Buddha, Plato, Kipling, Goethe and John F. Kennedy's inaugural address. I'm fairly certain that my grandmother did not attend college, but she must have been an avid reader with an open mind. I wish I'd known her better. I really didn't know her at all.

The other photos are from a box full of loose photographs of my mother's and an album or two of her's and her dad's. My mother told me that I was the only one of my siblings who showed much interest in them. Each time I visited her I'd pull the box out of the closet and study them all. I got familiar with them, enough to recognize my grandparents, aunts and uncles at different ages. My grandpa's black-paged album had a couple of photos of dead soldiers from his time serving in World War I. There were loose photos of my dad sailing, of her mother as a girl, of her deaf brother.

On the left side of the case is a framed, candid photo of my Grandma Shake hanging laundry on a windy day. Resting against it is a cross-shaped wooden milagro that I picked up while visiting the Southwest, or perhaps Brazil, I can't remember. I was drawn to its beauty, to its tiny metal figures of body parts and beings carefully nailed to its face. There are legs and arms and hands, a pair of eyes, a few anatomically-shaped hearts and a couple of ears. There's a bird and a dog and a cow and a sheep and a rooster and a camel. There's a boy, a girl, a woman and a cottage, a horse head, a flower and a car. And in the bottom left corner, upside down, a tiny baby lays in an awkward, arching pose. I think of that baby as Calvin, often meditating on his healing.

Behind the milagro is a photo of my Grandma Shake as a young woman sitting in a big wooden chair. The back of the photo says it was taken in San Jose. By the look of her youth it was likely taken before she lived in San Francisco where my father was born and lived until the age of five. As a teenager, I'd been strangely drawn to San Francisco, but it wasn't until I lived there that I learned my father had too.

The portrait of my mother is from when she was in high school or college. She's radiant and a gleaming halo fringes her hair like sunshine behind clouds. In my move to Maine in 2001, the same year she was diagnosed with Alzheimer's, its glass broke, causing a clean crack that runs across the bridge of her nose into her forehead. My mother—broken—is still my mother.

In the center of the case rests a silver rattle that my friend Sandy gave me for Calvin when he was born. By the time Calvin had the strength and skill to play with it he'd already sprouted a couple of teeth that we feared he'd knock out with the heavy rattle, so we kept it up on the shelf. It sits next to his first pair of sneakers, denim ones with white rubber toes, which are too tiny and cute to let go.

The doorway photo of my Grandpa Shake wearing sports coat, cap and tie bears a striking resemblance to my father when he was a young man. I love it just for that. It stands next to a faded-out photo of my Great Aunt Mary, who I never liked much because she was so grumpy and always wanted me to wear dresses, but I keep the photo because in it she's walking down a San Franciscan street, where she, too, lived. I miss that place so much. Behind Aunt Mary is a portrait of my Grandpa at the age of two. He's got long blond, curly locks like Calvin used to have. In front of that photo is a favorite of me and my dad taken in 1965. Dad is dressed in his work clothes, the ones I remember him wearing when he'd stand drinking coffee and eating soft boiled eggs while reading the morning paper.

The photo on the far right is of my dad between two of his buddies. I think this was taken during his time at the Naval Academy just after World War II. At six-feet-four-inches tall he weighed about 175 pounds at most. Over the years his physique barely changed, as he kept up with running, light weightlifting and calisthenics. He'd be eighty-nine this year. It's been eighteen years since the cancer took him, robbed him of his retirement, of enjoying the great outdoors he loved so much, perhaps more so having spent so much of his life confined to an office desk.

I regard these relics I've collected and assembled into a shrine of sorts, look at them every day. They help me remember where I come from, though I'm not really sure what difference that makes. After I am gone, if Calvin survives me, he will have no desire or need for them and we'll have no grandchildren to pass them to. I wonder, and doubt, if my niece or nephews will care about them at all. The faces would mostly be strangers to them, aspects without any meaning.

Finally, I look up the exact definition of the word.

relic: 

an object surviving from an earlier time, esp. one of historical or sentimental interest.

an object, custom or belief that has survived from an earlier time but is now outmoded. 

I am struck by the last definition:

all that is left of something.

click photo to enlarge

synthesis, beauty and light

Jasmine fills my nostrils each time I enter the room, which is painted mustard and is mine for three days. My sister-in-law has left a pile of tiny laminated cards resting in a porcelain bowl at my bedside. The first one I choose says, Power, the second, Truth and the last has the word Patience.

I wake to the sound of a foghorn skipping across the San Diego harbor. During past visits barking seals have broken my sleep and in my brain’s morning fog I’ve mistaken them for the sound of Calvin seizing. When I open my eyes I see a string of Tibetan prayer flags hanging across heavy white linen swags. Sitting up, I can see out the sliding glass doors to the boats in the marina which are floating in glass. The city beyond, though laced in fog, stands sharply against a body of blue mountains, Mexico in the distance.

Tonight I leave all this behind, leave the lusciously warm weather, the rumble of airplanes, the caw of green parrots and the chirp of songbirds, the lush foliage, the restful sight of a big western sky, of dolphins and pelicans, of city lights and the feel of Mom’s silver head, soft hands and loving smile—and family.

Back at home it’s been snowing again and will dip down below zero tonight. My boys are likely cooped up inside. I can imagine Rudy traipsing around behind them all day dragging his claws across the hardwood floors. As I write this I realize I’ve been having bad dreams about them, and the ache to get home deepens. I wish I could bring them here or simply lasso the West, with its sun and calm and expanse and repose, and drag it out there to Maine to melt off all of that cold and ice which makes me draw my shoulders tightly into my neck.

But, I still have today to soak my body in the sun and sop up as much of my aging mother as I can. Whenever I leave this place I never know whether I’ll be seeing her again. Bit by bit the Alzheimer's is melting her into this California scene, dissolving her into its purple and gold wallpaper days. I turn three more cards over—for my mother—and the words that appear are Synthesis, Beauty and Light.

simply mom

She gets littler and littler each time I see her. In so much as it’s her frame shrinking over time, it is also her being, her mind.

Scott and I approach Mom on the grass and swoop in for a group hug. Her downy, white head buries into my chest, her longish arms wrapping around our waists. Though she might not remember our names she seems to know she’s being cradled by her adult children and I’m sure she’d embrace us forever if she could.

We take Mom to the San Diego YMCA to watch Scott swim. In the shade I feed mom pieces of a Subway sandwich and some blueberries, dolling them out one by one so she doesn’t eat too fast and upset her digestion. Just like Calvin, I think. The skin around her watery eyes is red and irritated from rubbing or allergies or both. After lunch I set her down on a lounge chair, thinking the slap-slapping of swimmers arms will help her to rest. I offer her a stick of gum that she attempts to put in her mouth, paper and all.

For a good part of an hour we sit there on the deck. I’m taken back to my days as a child when I spent nearly every day at the pool. Some things don’t change. There’s the lifeguard wearing red and white sweats sitting behind sunglasses, under a visor and atop a tall sturdy white wooden chair. A man on the deck teaches swimming lessons to a couple of grade school kids. One of them, the boy, swims like a spider the way so many of my swimmers did when I was a coach. He’s telling the boy, who is about Calvin’s size, though younger, to reach with his arms and I find myself smiling. Then I find myself crying. I want to be transported to a place and time where I’m teaching my kid how to swim, telling him to keep his chin down, kick his feet and keep his elbows up. I long to see his little scrawny body move down the lane inch by inch until he reaches the deep end where I shower him with praise.

I see Scott in the next lane over, his own long arms tanned and toned from hours spent in the pool every week. He moves through the water like a serpent and I wonder if my stroke looks at all like his, and I am aware that my own boy will never grow into the same kind of man that my brother is, that his father is.

After the swim, at my sister’s condo, we lay Mom down for a nap. She falls asleep hard, then jitters and shakes and I wonder what is going on in her brain. Thirty minutes later she wakes to go to the bathroom. I take her in to help her and as she’s washing her hands we look into the mirror at each other. With my arm around her I tell her that I love her. Looking into the reflection of my eyes and smiling, she replies, “I love you. Really. No kidding.”

photo by Scott Shake

happy birthday matt

Today my brother Matt turns fifty-four. For the past six years or so, since before he and his wife Stacey got married, they've been taking care of my mother who was diagnosed with Alzheimer's about a dozen years ago. As a result, Matt and I are living strangely parallel lives in that we are both primary caregivers for disabled loved ones. It's a tough road taking care of these family members, Calvin and my mom, who have great trouble communicating, must be bathed and toileted and fed and supervised, who are unsteady on their feet and who take loads of medications, Calvin for his epilepsy, Mom for her Alzheimer's.

Taking care of Calvin means I have a hard time getting away to see my mom, much less enjoy a vacation of my own. Matt and his wife, I imagine, feel equally trapped, not that it is impossible to vacation, just not easy.

So, happy birthday Matt. I hope you can get out for a long walk and a nice dinner and try to relax some. I'll be toasting you tonight.