collective breath

On the way to Woody's, walking hand in hand with Calvin and Smellie, a friend approached on the other side of the street riding his bicycle. We shouted above a passing car or two, then he peddled across and stopped a safe distance in front of us. After chatting a bit, I asked how he and his family were doing.

"Oh, we're struggling," he said in a resigned tone.

My heart sunk.

"Yes, everyone is struggling in their own way," I replied.

He smiled, put his head down to find his peddle and nodded. We said fond goodbyes as he rode off.

When Calvin, Smellie and I reached Woody's house, I called him on the phone. When he picked up, and from opposite sides of his window, we complained about the biting wind, and I told him about my conversation with the neighbor. Woody's silence made me think he agreed that life is strange and difficult right now.

I've been thinking about the tens of millions of unemployed Americans struggling to make ends meet. While I believe we need to continue to shelter in place to mitigate the stress on the healthcare system, I'm sympathetic to the need for hurting people to get back to work. So, too, I've been lamenting those who are sick and suffering and who have lost loved ones to this insane virus. I've been missing seeing friends, gathering around a table to share food and drink and to shoot the shit from across a table. I miss the college students terribly; their absence is palpable and I know it has been hard on them to be away this semester. I feel things have been particularly devastating to doctors, nurses and teachers, especially those with young families.

Strolling home from Woody's house, Calvin turned to me for a hug, and while I embraced him I took a deep, collective breath for everyone.

wanderings

Nowhere to go. Nothing to do. No one to see. Awake at night fretting. Has the moon always shone through that singular window, or have the trees thinned as they've gotten older?

Days drag. Monotony seats itself and stays. In the meantime, patience wanes. Adult becomes child. Child becomes fiend. Words hurt, even as they come forth from the throat and pass the lips, and like the sharp slap of a hand, they sting. Infinity is marching in circles. While time expands, space compresses. Still, there's too little room for minds and feet to wander aimlessly or with purpose.

As if overnight, bodies weather. That shock of grey, that spray of flecks, that crepey skin. What matters? Things feel so unchanged, and yet alien. Is happiness so fleeting, despair something to cling to like wrapping arms around a tree when bodies are off limits? Which bark serves us—smooth, so that we don't feel too much, or rugged, to remind us we are not alone in bearing scars and hardships?

Mouths hunger even when the gut doesn't. Food—or its refusal—is a steadfast companion for stress and worry. At times there's no filling that inner pit. At others, emptiness and abstinence quench.

A face unseen for mere days looks akin to one that's been missing for ages. Under a cap, mask at her chin, is she familiar or somehow foreign? And who is inside this body? Someone new? Or the same ole tired one, perhaps emerging from a long facade of optimism. Are we coming undone, or being remade?

How many days has this shirt been worn, this exact path been trod, these same backroads been traveled along? Wear the garment inside out and it's altogether different—raw-edged as if neglected, or perhaps well loved. Meander the path and roads in the opposite direction and stumble upon an unseen landscape. So many missed vistas to discover.

Forgiveness. For ourselves. For others. It is possible, even easy, like bending a sapling nearly in half without a break or splinter. Inside, we're that tender. If anything, the sheath may give way, revealing a heart rarely seen, like a moon held between branches, or a wooded path roamed in the opposite direction.

Photo by Michael Kolster

i can hardly wait

I can hardly wait to belly up to the bar with my husband or girlfriends and order from my favorite female bartenders some wine and fries and Rita Hayworths or beet yuzu martinis while nibbling fish tacos or Asian slaw with peanut sauce.

I can hardly wait to stroll in the woods with Smellie while she's off leash chasing squirrels. I can hardly wait to jog along the college trails without swerving wide to the left and right to avoid others' breath which might be drifting on the wind, (and to feel rested enough to do so.)

Someday soon I hope I'll be setting the table for four or six or eight, lighting candles, putting out the weathered red napkins on top of the handmade placemats we got from friends we don't see anymore. Hopefully, in the not-too-distant future I'll be making a big batch of my famous salad with mixed greens and little orange tomatoes and crumbled blue cheese with chopped red onion and avocado plus our favorite cheesy garlic croutons drizzled with Michael's delicious mustardy salad dressing. As soon as it's safe, I'll be delighted to greet our go-to guests arriving with just-mixed cocktails, bottles of wine, impossible cakes, home-foraged mushrooms, and wicked-smart, funny, deep, frivolous, intellectual and bawdy conversation.

I'm still holding my breath for Calvin to stop having seizures, or at least too many of them (which is more than one), and for the federal government to legalize cannabis so that dispensaries can do business with banks and some day maybe medical insurance will cover it.

Goddammit.

I'm so ready to dance to funky music in our kitchen, elbow-to-elbow with all of my peeps laughing and munching and swerving and sipping and shouting and writhing and delighting in each other's company.

I can hardly wait to have friends commune with us in the garden, to gather around a fire at twilight, to see the smoke settle in the field behind our house, the same field where not that long ago I waved at the college students passing by. I'm ready to host potlucks and barbecues and cocktail parties and to have a fabulous mess to clean up while drinking my coffee the next morning.

Like you, I can hardly wait for all of this coronavirus craziness to be over. I hope it will be soon. Until then, we just have to be smart and cautious—more so than The Unhinged One and his Unmasked Veep—and wait a bit longer to see our besties right up close.

In the meantime, call us. We're pretty much always home.

Homies, Luke, Jacob and Sarah.

sheltering in maine

click on any image to enlarge

looking glass

Emerging from the foreground is a blue-and-white-striped duvet folded neatly and laid upon an ivory coverlet. On the other side of the glass, to the left, sits my eighty-seven-year-old buddy, Woody. The reflection of the outside world is too vivid to see him reclined in the shadows, but he's there. Behind my figure is the house in which Mike lives, my ninety-seven-year-old widower-friend whom I haven't seen in several days and whose voicemail is full when I call.

It's nearly five o'clock. Michael just got home after a day of printing the photographs he took while in Paris, Hawaii and Lisbon Falls, Maine, which is just up the river a spell. It feels weird that travel isn't really possible or advisable now. Smellie is somewhere in Woody's yard, her leash trailing behind her as she trees squirrels.

The way we connect in this crazy coronavirus time is strange—by phone, by FaceTime, through bandana masks, from across the street, and from the opposite sides of storm windows.

Before I literally look in on Woody, I ask him, in the manner of my late father, if he is decent. He chuckles. I walk around the back of his house to his den. Though I can barely see him through the glare, we joke on the phone about how strange it might look to the neighbors to see a woman peering into his home through a side window. I told him that for me to do so seems completely normal. Through the glass, we tease and laugh. I wish I could hug him like I used to. Maybe in warmer weather we'll again be sitting on his front porch together sipping bourbon and ginger ale, watching passersby, discussing birds and neighbors and politics, even if from a safe distance. I hope so.

Later, Michael and I speak with our buddies on FaceTime, first Jim, then Matty. Jim makes me laugh until I nearly wet my pants. Clever little devil, and with a face as earnest as any young fellow. He told us so. I wish Jim and San Francisco weren't three-thousand miles away from us. And I miss Matty's frequent visits, along with dozens of others. Because of the coronavirus, everything is so beyond what we've come to understand as normal.

I've been making an effort to see one or two loved ones' faces and or hear their voices on the phone every day or so. For me, these quarantine times require it in order to get through without too much despair seeping into the long hours. The news cycle and state of things and The Unhinged One are crazy, fascinating and outlandish, like looking at an image and not really knowing or understanding what you're seeing and what might be hidden in the shadows. And yet, the rest of the world and its people are so beautiful.

trying epidiolex

Sunday morning, after a second restless night filled with what I believe were focal seizures, we gave Calvin his first dose of Epidiolex, a plant-based pharmaceutical version of the popular cannabis constituent, cannabidiol, aka CBD. We've had the bottle containing a minuscule amount of the drug, which is in oil form, for about a month, waiting for the moment when I felt right about giving it to Calvin.

I began reading about Epidiolex nearly five years ago when its clinical trials began. Because of social media and the network of parents—mostly mothers—of children afflicted with epilepsy, I knew about the drug trial before Calvin's neurologist did. There was an ongoing trial at Massachusetts General Hospital, but Calvin wasn't having enough seizures to qualify and participate.

Shortly after the drug was approved in June of 2018, I began following a Facebook Epidiolex group. My sense is that, not unlike other CBD oils, many patients seem to do better on lower doses of the drug and have fewer dose-related side effects such as diarrhea, agitation, insomnia and loss of appetite. I've also seen documentation showing that some doctors are having success starting their patients on a fraction of the recommended starting dose of five milligrams per kilogram of the patient's weight. On the whole, however, it's a mixed bag; some children have become seizure free on Epidiolex while others have seen their seizures exacerbated, albeit on higher doses of the drug, which is not unlike other pharmaceuticals.

Calvin's first experience with medical cannabis was in early 2014. I had been researching its use in treating seizures for about a year, after a lifetime total of ten antiepileptic drugs had failed him. The learning curve was steep; I knew of only two other parents treating their children's seizures with the herb. Both were using CBD. Paige Figi, whose daughter Charlotte died recently, was one of them. At the time, Maine did not have any high-CBD cannabis strains with which to make an oil. Connections on Facebook led me to a guy in Sacramento named Dave who was making a cannabis oil using one of its other non-psychoactive constituents, THCA (tetrahydrocannabinolic acid.) Blindly, I set out in search of a strain that might help reduce Calvin's seizures while not making him too wired or too sedated like the pharmaceuticals had done. I spoke with several local dispensaries and individual caregiver growers. I met some of them in my home. Eventually, I decided that a high-THCA hybrid—part indica (sedating) and part sativa (stimulating)—might be best. I was able to procure some flower from a local dispensary, and Dave from Sacramento held my hand through the process of making a THCA oil using his recipe, which employs a cold process meant to avoid altering the non-psychoactive THCA into psychoactive THC.

Prior to giving Calvin my homemade THCA oil in February of 2014, he had been having grand mals every week or two during the day, usually when he was in the bath. After reaching a therapeutic dose of the oil, Calvin had no daytime grand mals for five-hundred days. Since then, he has had only a handful or two of grand mals during the day, greatly reducing my anxiety and his risk of getting hurt. Calvin also began sleeping better and his behavior improved.

During Calvin's first four years on THCA we were also weaning him from the benzodiazepine, Onfi. As we slowly lowered the benzodiazepine, Calvin's seizures, not surprisingly, increased. Sometimes he had more than a dozen per month, including focal ones. We tried a homemade CBD oil followed by a branded one, but they only seemed to exacerbate his focal seizures. Finally, in June of 2018, we started him on Palmetto Harmony CBD, which uses a different extraction method than the other ones we had tried. On a daily dose of about 25 milligrams, Calvin went forty days without a grand mal. After the breakthrough seizure, however, we struggled to regain that same kind of seizure control, eventually increasing the Palmetto Harmony to 145 milligrams in that effort. Sadly, Calvin's focal seizures also increased. When we cut the dose in half he did far better, but was still having too many seizures. So, in anticipation of trying Epidiolex, we gave Calvin his last dose of Palmetto Harmony in February of this year.

Since then, we have had some luck managing Calvin's seizures with higher doses of my homemade THCA oil; he has had only two or three grand mals in each of these last couple of months. But a recent flare-up of focal seizures, which had virtually disappeared back in late November, compelled me to finally start Calvin on the Epidiolex.

Having observed over years that smaller doses of CBD seem to work better for Calvin and other children, I was able to get his neurologist's buy-in (not that I needed it) to start Calvin on a fraction of Epidiolex's recommended starting dose of five milligrams per kilogram. Instead, Calvin started on just over half a milligram per kilogram of his weight, for a total of twenty milligrams per day instead of 174 milligrams per day. Having seen firsthand how well Calvin did on Palmetto Harmony CBD at a similar dose gives me hope.

So far so good. Calvin has been in a decent mood and his sleep patterns have not really changed, but it is only day three, so cross your fingers and knock on wood.

Calvin coming out of a seizure, August 2014

invisible giant

Walking Calvin around the block yesterday felt like dragging a stubborn dog. He'd start and stop, swerve and hitch, sometimes weaving behind me even as I held onto his wrist. At one point he pivoted and fell onto his back at the edge of the sidewalk. Since my right hand had Smellie by the collar, I wasn't able to prevent his fall. Still, I was able to let him down slowly so he didn't hurt himself. Then, he wouldn't budge, so I had to lift him back up. I became frustrated, let Smellie go (she's such a good dog) and yanked my careening kid the rest of the way home.

Thankfully, the remainder of the day was mellow, consisting of a nice car ride and lots of cuddling. While putting on Calvin's nighttime diaper I asked him if he was tired, and he made a little hum. He fell asleep as soon as his head hit the pillow.

After sleeping soundly, Calvin aroused at eleven p.m. in the thralls of a focal seizure, wide-eyed, restless and trembling terribly. I dripped some THCA cannabis oil into his mouth and held his head so the oil had time to absorb and so he wouldn't drool it out. I took his temperature, changed a soaking diaper, then crawled into bed with him. Three hours later this repeated, and a third time an hour after that. At four-thirty I gave him his morning Keppra hoping to avoid more fits, but the strategy didn't work and at five o'clock he had the worst focal seizure yet. As I was reaching to turn on the light, Calvin, in the middle of the seizure, began to sit up, put his hand on the side of the bed, slipped and fell out. I halfway caught him, softening his fall but not before his lip caught the sharp corner of the wooden step stool. Michael helped me pick him up and put him onto the changing table where I syringed in his morning cannabis oil, noting a lip that was bleeding and beginning to swell. The seizure began to worsen. His tremors became so violent he looked as if he were a rag doll being shaken by an invisible giant. Something akin to fear filled his eyes as he kicked the arm of the lamp clamped to the end of his changing table. I put my arms around his neck and held him closely until his trembling ebbed then quit.

When it was over, I crawled back into bed with him, lamenting so many seizures amid what had been shaping up to be another good month. Stroking Calvin's face in search of possible fever, my thoughts drifted to the little girl so much like Calvin who died last week from likely complications of the coronavirus. Her name was Charlotte Figi. She was thirteen years old and, without knowing it, had become the face of CBD oil as therapy for epilepsy. Her mother, Paige, had been my mentor of sorts—one of only two parents I knew of who were treating their children's seizures with cannabis. She had suggested different strains of the herb with which I could make my own oil (this was years before it could be ordered online and shipped) and she walked me through how to safely wean Calvin's benzodiazepine. As I embraced my son, I wondered what this dutiful and loving mother, this pioneer and champion for so many, was feeling. I wondered when she might begin to feel relief from the loss of such an extraordinary child who filled so much space with her brightness. I wondered if she felt any modicum of solace in knowing that the invisible giant which is epilepsy no longer haunts and harms her daughter. I wondered if, one way or another, Calvin and I will ever feel that same peace.

Photo by Michael Kolster