truth be told

don't diss me. don't dismiss me. don't chide me. don't deride me. don't belittle me. don't try to fix me. don't attempt to remake me. i'm not my parts. their sum is my whole. forgive me. listen. reflect. examine. review. express regret. don't doubt me. don't discount me. no, i'm not too sensitive or solemn. too stupid or foolish. too naive or unversed. this is who i am. i am good. don't get defensive. don't second guess me. imagine what's inside me. walk in my shoes. live a day with my load. don't assume. accept my indignation. if only you understood. don't misconstrue me. don't disabuse me. don't try to unpeel me. instead try to feel me. please don't curate me. i'm not a project. i have faith in my own works. take care not to bruise me. if i tell you it hurts, know that it's true. don't presume. don't try to justify. consider your part. practice saying i'm sorry. those foreign words. it's not hard. intentions are not everything. sometimes they're confused. if you love me, accept my perspective. it's simply my truth.

Photo by Michael Kolster

strange world

It's a strange world when ice rinks are made into ad hoc morgues, when conference centers become makeshift hospitals. Strange to see movies depicting throngs of bodies packed together. Already, that seems so ancient and alien. Strange to feel alone in a place where so many good friends live within minutes. Strange to lie in bed and wonder if the virus will spare my kid.

These past few days I wonder if Calvin may be feeling the strangeness, the heavy-chested, desperate anxiety of it all. He's not going to school. His nurses aren't coming to work. Life is off-kilter. Maybe his craziness is "just" that a seizure is coming. But Jeezus, he's been off his rocker the past few days. 

A friend from my years in San Francisco wrote to me:

I just wanted to touch base with you, as I am growing a bit concerned. It may be my imagination, but my sense from your posts is that you are feeling increasingly desperate, depressed and isolated.

I wish I could be there to give you a hug—and a much deserved break.

I’m here if you want to talk :)

I wrote back telling her that she'd been sweet and not wrong, that I'd had a bad day yesterday but that today is better what with the sidewalks clear and the snow mostly melted. I said that it does feel more isolating to have lost the ability to do the few precious things we were able to do with Calvin. I added that our lives have not changed much compared with most people's, and that maybe our experiences are more similar now.

It's a strange world to know all your favorite cities and people are on lockdown. Strange to speak on the phone with a loved one in hospice while looking at him through his kitchen window. To avoid people on the sidewalk. To no longer gather with friends over dinner. To not want others to pet Smellie, to put her on the leash when someone is coming. To wonder who in our circle of friends might succumb to the virus.

It's a strange world when one mother's child or sibling or parent is worth more than another. Strange that the wallets of oligarchs seem to take precedence over the ability for some to put food on the table. Strange and lamentable that, in a pandemic, so-called leaders don't hold themselves accountable for past mistakes, for present missteps and neglect. Strange when others don't see through the charade. Strange when wars are fought in the name of gods. Strange when pious people worship the shockingly ungodly.

The hospital set up at a pavilion in Ifema, Spain convention and exhibition centre in Madrid. Photo: AFP

snow day blues

When I take showers I turn on the baby monitor so I can hear Calvin in his room down the hall. He plays in his safety bed with a bunch of his favorite toys—Sesame Street cell phone, crocheted rabbit rattle, Oball football and other light-up, musical toys. Today, he is doing all sorts of vocalizing—screeching, grousing, cooing. When he coos he sounds like a big baby, which in ways, though he is sixteen, is just what he still is. When I hear his happy sounds, I imagine how awful it would be if he got sick. I feel my eyes sting and well up with tears wondering if we'll be able to fend off this flu.

Last night we got about a half foot of heavy snow. I wish Calvin and I could go outside and build snowmen and women and make snow angels. I wish we could go cross-country skiing at the fields and through the woods. I wish I could feel safe taking him to the grocery store, which is one of the two places he likes to go. The other is Cafe Creme, which is closed to indoor seating but, like many local establishments, is offering food and drinks to go.

Hopefully the town, which has been practically shuttered, will clear the sidewalks soon. Hopefully the snow will melt quickly; Calvin cannot walk well in deep snow or slush.

This coronavirus shit is getting real. The projected numbers are sobering at best. There is a massive shortage of ventilators and masks for sick people and health care workers. GOP senators are trying to funnel money to their rich constituents and corporate backers, twisting the truth to fit the absurd narrative their so-called leader tweeted so recklessly, "Democrats want the virus to win," when what Democrats are trying to do is to get a win for the average American worker. The Occupant is still lying to the American people, trying to save face, shifting blame, playing down the pandemic to secure his reelection and the solvency of his private businesses. Too many Americans put their faith in the Charlatan instead of in the scientists and experts who know and tell the truth.

I towel off and get dressed. Calvin is "singing" from his bed. Though he sounds happy for now, I feel sorry for him and for us, what with little to nothing to do. I imagine he is bored, but I guess that should be the least of my worries. We've got to take it one day at a time, even when it snows.

On my way to the fields

sheltering in place

Sheltering in place. Stuck at home. Missing school. In our current circumstance, we can't go to the movies. Can't browse our favorite stores. Concerts and birthday parties and day camp and sleepovers aren't options. Can't go out for family dinners at our favorite restaurants. Can't do play dates. Can't go to the playground to swing or climb on the equipment. Can't go on vacations or spend the night away while someone else babysits. Not yet, anyway.

Stuck at home for what is and will be hours and days and weeks and months on end—for the foreseeable future considering the state of things. We can listen to music, turn on the news, call friends, read a few chapters, write a little. We can do house chores, take naps and long showers, enjoy films, go to bed early. We can watch our offspring play alone. We can cook and eat and drink. Weather permitting, we can take walks in the neighborhood. We can go on long car rides. We can stroll through the woods. Mostly, though, we're stuck at home.

Visiting friends for family dinners isn't an option. Going to the grocer is a challenge. They're frequently out of what we need, often when we need it most. When we do go, other shoppers regard us with suspicion. We have to steer clear of touching certain surfaces, especially since some of us so often touch our face and mouths.

Times are strange. Life is hard. Welcome to our world.

As the parents of a non-verbal, incontinent, impatient, unsteady, severely developmentally-delayed teenager with autism and frequent seizures who is often loud, can't sit still or play with others, touches and mouths everything including his fingers, and who sleeps in a special safety bed, we've lived the way I've just described—stuck at home, mostly, with little else to do—for sixteen years. Thankfully, in great part because of the love and support of others, I've survived and remain mostly sane.

That's why I'm convinced, in this strange and scary time of coronavirus, you can too.

Call me if you need a pep talk. I'll most likely be at home.

Photo  (screenshot) by Michael Kolster

love in the time of cornavirus

nap in the sun on the green couch with my child. rest heads together. love his calm, weight and warmth. hold him in the wake of his seizure, arms around his waist under a comfortable cover. get extra sleep if possible. take in blueberries one by one, noting the tart ones from the sweet. facetime with friends at cocktail hour. build a fire in the wood stove. watch its blue and yellow flames as they roll. light a few candles. love them. drink a glass of wine slowly. take long walks with smellie in the woods. fascinate over the strange state of things. love those willing to help. remain calm, yet vigilant. hope and expect the same from others. know that some things are out of our control. care about neighbors. resist the impulse to hoard. try new recipes. focus on music. contribute to local establishments and hunger banks. study a familiar photograph and its beauty as if for the first time. regard the outdoors—watch limbs quiver, see leaves unfold in the sun, note the plumping-up of buds, look up and dream on blue sky and passing clouds. remember to forgive. love the morning frost glimmering on a landscape absent of snow. love the crunch of it underfoot. delight in spring coming. listen intently to a robin's chirp. find the zen of things—washing hands, wiping door knobs, washing apples, folding linens, mopping floors. study loved ones' faces. embrace their changes. hunker down when it's cold. smile at strangers. empathize with those most fragile and afraid. embrace loved ones as if there is no tomorrow.

dear students

The field behind our home belongs to Bowdoin College. On its eastern edge sits a small dorm which used to be a retirement home. In the center of the field is a picturesque, one-room schoolhouse painted all white and raised up on cinderblocks. It has been vacant for decades and now serves as a toolshed of sorts. Every year from August to May, we watch students come and go from classroom to dining hall, to dorm. In the spring they play frisbee in the back field, or lay on blankets in the sun and study. On weekend nights they walk in groups to and from parties. In the spring and autumn, I wave at them when I'm watering the garden as they stroll past. I learn to recognize and get to know some of them. I come to love others.

A couple of nights ago we got the news that the college students will not be returning to school after spring break because of the coronovirus. Their belongings will be put in storage or sent back to them at home, wherever that is. They'll spend the break with their families—at least those who have families—and some of them will come back to collect their things in a few weeks. Those who cannot return to their homes due to hot spots of coronovirus, like Italy, are allowed to stay on campus where they'll be mostly alone, though fed and supported. Classes will resume online somehow.

The absence of close to two-thousand students in this fairly small town is already palpable, and will be for some time to come. We won't see them at local establishments. We won't pass them walking to athletic practice, won't hear them laughing and cheering when the weather warms, may not enjoy seeing them in them dressed in their spring best and caps and gowns for graduation. Without them, ours will feel a bit like a ghost town. My heart already longs for them. Because of Calvin's disabilities, I grieve the fact that he'll never go to college. Instead, and though it's bittersweet, though mostly sweet, I imagine him in some of them.

At then end of every semester Michael invites his students over for dinner. It has been a tradition since he began teaching photography here twenty years ago. At those gatherings I look forward to communing with the students. Some of them I recognize from previous dinners here, their interest in photography as a means of looking at the world and themselves differently—as taught so masterfully by my husband—inspiring them to take advanced classes. Every semester there are a few who take the time to visit with me and to ask about Calvin. Some of them have made dinner for me and Michael at their apartments. Others invite themselves over here. Some have joined us for Thanksgiving. One dear has let me crash for a weekend at his family's home in Manhattan and has fed me at their restaurant. More than a handful follow my blog, for which I am most grateful. A few keep in touch after graduating by writing, calling and visiting. Some my heart has silently adopted. As if a child or brother of mine who lived with us for a stint or two, one former student's premature death I will mourn forever, just as memories of him I'll savor as life gifts. I don't remember all of their names, but some of my favorites come to mind—Arnd, Ivano, Nick, Emma, Hector, Katie, Ouda, James, Aspen, Moira, Micah, Raisa, Margot, Ahmad, Seth, Emily, Henry, Jude, Samantha, Hassan, Macy, Daniel, Victoria, Pawat, Ben, Meghan, Jean-Paul, Octavio, Drew, Blanche, Salam, Maina, Brennan, Theo, Garrett, Izzy, Darius, Trevor, J.P., Alice, Nevan, Preeti, Colin, Nate, Niles. We miss seeing all of them—all of you. I hope I didn't miss anyone.

Hopefully, sooner rather than later, we'll get on top of this coronovirus and limit its spread. The Occupant and his administration did not get off to a very good start, so its likely to get far worse before it gets better. Michael and I fear what it might mean for classes next September. I hurt for the students, especially those meant to graduate this May. But these Bowdoin College "kids" are remarkable and no doubt resilient. Others like them—so hopeful, curious, talented, generous, thoughtful, industrious—I rarely encounter.

Dear Students, call if you want. Stop by anytime, unannounced even. Try not to be strangers. We are here for you if you need. You are on our minds and in our hearts. Please know that we love and miss you.

May 2015

the state of things

When I reached him his skin was gray as flagstone, his sweet face twisted and ghoulish. He was in his bed on his back and seizing. It had been ten days since the last ones and, like the full moon to which his fits often seem tethered, I had anticipated its arrival. I felt it in his hot skin, heard it in his agitated grousing, saw it in his eye-poking, his heroic attempts at sun-staring and restlessness at bedtime.

As Michael and I sat down to the first of his famous home-cooked meals since having spent over two weeks in Paris, I predicted Calvin would have a seizure within the hour. I wish I could say that I was wrong.

After Calvin's grand mal, I crawled into bed with him, noting the earliness of the seizure. Three hours later, just before midnight, he had a repeat. This time I gave him extra THCA oil. I had a hard time sleeping with him. The bed is getting too small for the two of us to share. Nevertheless, I kept vigil, and at five o'clock he woke to a focal seizure, the kind I haven't seen him have since November. It was on the long side of things, and I wondered if it might turn into a third grand mal, so I slowly syringed in his morning THCA oil which seemed to break the spell.

Lying awake next to him, as usual I thought about the state of things in the world. I lamented the coronavirus and its subpar handling in this nation. I love, yet wondered about, the mild early spring we're having. I'm eager to know who is going to win the Democratic election, wishing the two old White guys would drop out and endorse Elizabeth Warren. I considered Calvin's aides at school who have the difficult task of taking care of someone so enigmatic. I wonder if they resent my efforts, advice and cautious criticism meant to make caring for him easier and safer for everyone.

My boy is home from school today. Not eating or drinking much of anything. Very quiet and mostly still. He's having too many grand mals of late—eight in January, seven in February, eight in the past thirty days or so. I asked his neurologist to finally prescribe Epidiolex, the plant-based pharmaceutical cannabidiol (CBD) oil. I told the doctor I would start Calvin on a tenth of the recommended starting dose, i.e. 0.5 mgs/kg instead of 5 mgs/kg of his weight. With CBD, I believe less is sometimes better. Insurance has approved it. We should be getting it this week. I'm hoping it works because I've pretty much run out of reasonably-promising back-pocket options for Calvin's therapy.

As I write, I go back to thinking about the troubles this world is facing: climate change, viruses, stock-market plunges, hunger, hoarding, reckless presidents, gross inequity, trolls, bots, election meddling. But then I remember the photographs of Paris parks Michael brought back to show me. I go to his website and look at more. I dive into them readily, forgetting the regrettable and inevitable, clinging to hope, hoping for change. Then I remember, spring is coming.

St Cloud, 2017 Photo by Michael Kolster

inevitable

While walking Smellie today I saw a pair of morning doves perched on a stump. These are not the kind of birds I see all winter. In a sunny patch near the house, crocuses are just coming up. And while there is still snow on the ground, I feel spring is inevitable. Days are getting longer. The weather is milder. The sun is higher. Soon, perhaps, I'll be sitting with Woody on his sunny front porch sipping a rare bourbon. Perhaps with the thaw will come the ever-so-slightly lessening of viruses. For now, however, outbreaks seem inevitable.

I've no doubt right now the birds are building nests in hidden places around us. Though the earth is still frozen, I've got plans to move a couple-few plants as soon as it softens. When I can, I'm taking longer walks, trying my best not to wipe out on the swaths of ice still coating large sections in the woods. I dream of early summer when buds will be open and smoke from the barbecue will fill my nostrils. I yearn to dine in the screen porch, and walk in the garden holding hands with Calvin. For now, all that is still impossible. He and I are still trapped indoors because of the elements. But getting outside is inevitable.

I wonder if Calvin pines for summer. He stares at the sun, but I wonder if he ever regards a blue sky with clouds passing over. I wonder if he too laments the cold weather. He can't revel in fresh snow or skate on ponds with the others. I wonder if he's ever seen a cardinal. I'm pretty sure he hasn't. In the thaw, the squirrels—which I also don't think he's ever seen though they are abundant—are digging holes unearthing a thousand buried treasures.

Today is day six since Calvin's last seizure. I feel one coming. They're all disagreeable, but slightly easier to take these days mostly because they're so predictable. I just wish they didn't come in spades—or at all—but for now they're inevitable.

I'm proud to have voted for Elizabeth Warren. The ending of her presidential race is regrettable. When will we forsake our biases and fears and elect a female president? I heard of so many women who hedged their bets when it came to casting their votes. We so need diverse and female leadership. The world is not doing so well under the oligarchic patriarchy. In fact, the earth, its flora and fauna are showing acute signs of sickening. I'm dreaming of ministries where at least half of all members are women. It may take time, but, like spring coming, I must hold onto the notion that it, too, is inevitable.

trees photo by michelle lisi

indifferent nature

I'm not one for praying, nor am I looking for answers as to why the world exists. I don't need evidence that there is life, intelligent or otherwise, on other planets. If I look to statistics and consider the magnitude of the universe, I already know the answer, which is yes. Though I lament life's miseries, I don't wonder why there is suffering in the world. Mankind can be cruel. Nature is indifferent. I only wonder, when reckless and despotic leaders war, oppress, starve and shell civilians, why others allow them to continue. But I guess I know the answer to that, too: power, money, conceit, control. I wonder why mutli-millionaires and billionaires aren't more charitable with the absurd profits they make on the backs of those who actually do the labor. Instead, they pocket those profits and too often pay starvation wages. These are the things I think about on days like this.

Last night at nine, Calvin had his third grand mal seizure in less than twenty-four hours. To stop the cluster I gave him Diastat—rectal Valium. It was the first time I had used it in months if not years. It has seemed to stop the seizures from advancing, but the real test will be whether he has more tonight. I don't know if Calvin is ill or if he is simply outgrowing his medication, or whether this worsening of clusters is an effect of eliminating his CBD oil recently. Like world torments, I don't question why my son suffers, at least not philosophically. As I said, nature is indifferent. But I would like to know the root of his weekly seizures, and I'll continue to search for ways to beat them into submission.

My thought this morning was to more seriously consider giving him the plant-based pharmaceutical CBD called Epidiolex. I've been following a Facebook page about the drug for months, noting its trends and side effects. It may be a last hope for Calvin considering he has failed ten anti-epileptic drugs. If we do decide to move forward with it, I'll likely put him on a fraction of the recommended starting dose. What I've noticed about CBD is that sometimes giving less is more effective and, like all drugs, too much can cause unwanted side effects including increased seizures.

Today my boy has been waking only for moments throughout the day, recovering from the assaults on his brain, and sleeping off the benzodiazepine. Though he is in a decent mood and seemingly content, I feel sorry for him. I've watched him seize thousands of times in his life. He sometimes turns gray-blue, bites his tongue and cheek till they bleed, may sometimes have vicious migraines and often appears woefully unsettled. Watching him suffer is punishing for me. Some folks believe that God punishes people who've sinned by doing things like "taking" their newborn babies, or rendering their children with afflictions, or causing natural disasters in liberal states, or allowing mass shootings in gay nightclubs. That is such bunk. The notion is so offensive, and I wonder how anyone could or would want to believe in a god that would behave that way.

Today, Calvin's buddy Mary came to watch him for a couple of hours in Michael's absence, so I was able to get outside with Smellie. The warmth of the sun offered respite amid a bitter thirty degrees. Some of the snow is melted and buds are beginning to swell on certain trees. I baked some chewy-crispy chocolate chip cookies for my friend who is now receiving Hospice care, though doing pretty well considering. In the garden, the greens of the Alberta spruce and the reds and purples of the small-leaf rhododendrons are gems right now. I wonder if we'll have an early spring. I'm hoping so. But you won't find me praying for it, because nature is indifferent. That's just the way She rolls.