day nine, yet grateful

I didn’t completely see it coming. Yesterday, the only indications of an impending seizure, which I star in Calvin’s daily journal, were his warm red hands and ears, wanting to drop down at school, and the fact that he woke up at four o’clock and never went back to sleep. Typically, in the days preceding a seizure, besides increased fits of hysteria, the journal is marked with a dozen or more stars, increasingly so, as the seizure approaches. So when I heard Calvin rip into his grand mal this morning at 3:45 a.m., I was surprised and disheartened.

However, I am also encouraged. This month Calvin has suffered only three grand mal seizures. In November and December he suffered six and seven respectively, plus clusters of a dozen or so partial seizures in the hours and days after the grand mals. In an attempt to quash at least some of his seizures, I’ve employed a few strategies. The first was to double Calvin’s bedtime THCA cannabis oil hoping to eliminate the clusters of grand mal seizures he’d have in any given night. That tactic seems to have worked, limiting his nighttime seizures to just one. The other step I’ve taken is to slowly syringe his clobazam liquid into his mouth right after the seizure to prevent a subsequent one when he wakes back up. This seems to be working, too, at least for now. The last strategy I’ve taken is to temporarily increase his Keppra dose the morning of a seizure to thwart the clusters of partial seizures in the wake of the grand mals. So far, so good! If these tactics continue to work, and if the extra THCA at night also buys us a little more time between grand mals, Calvin will have about three seizures a month, which is slightly better than the number he had two years ago when he was taking nearly eight times as much benzodiazepine and before we began giving him cannabis oil.

We continue to wean Calvin from that benzodiazepine, clobazam, aka Onfi, albeit at a snail’s pace of five percent every couple-few weeks. At this rate he won’t be completely off of it until August at the very earliest; we started weaning it almost two years ago.

I'm also encouraged because Calvin is on the lowest amount of pharmaceutical antiepileptic drugs in years, probably since he was three. I’m hell bent on getting him off of the benzo, but we have to do it safely and slowly enough so that Calvin doesn’t suffer. I whole-heartedly believe that, without cannabis, this wean wouldn’t be possible without causing Calvin terrible side effects such as sleep disturbances, headaches, cramps and a huge increase in seizures. As it is, the kid's balance, sleep and behavior are all markedly improved over recent years, and for that, I am most grateful to cannabis.

Photo by Michael Kolster

reflections

remembering the holocaust

"A nation's greatness is measured by how it treats its weakest members."

—Mahatma Gandhi

Today is International Holocaust Remembrance Day, in observance of the genocide of an estimated six million Jewish people, two million Gypsies, plus 250,000 mentally and physically disabled people, including those with epilepsy, and nine thousand homosexual men by the Nazi regime and its collaborators.

The regime’s first victims, as early as 1939, were adults and children like my son Calvin, who were deemed as “useless lives” because of their physical and intellectual disabilities, and whose gruesome executions were meant to improve the economy and cleanse the Aryan race. The code name for the euthanasia law was "Operation T4." In the years that followed, millions of others met the same fate in Nazi gas chambers and suffered torturous medical experiments meant to discover how best to extinguish a soul.

I’d like to think that Western societies have learned from this atrocity and thus divorced themselves from these kinds of fascist beliefs. Regrettably, I know that is not true. I know because today I see fear, hatred and contempt for others seething in the hearts of some we know. I know because people like Donald Trump spout that Mexicans are murderers and rapists, and calls for the rounding up of Muslims, and mocks disabled people, and openly expresses his disgust for women. I know because wicked white supremacy is alive and well. I know because I see six white high school girls smugly spell out the N-word, each letter shaped with gold tape on their black t-shirts, substituting asterisks for Gs; they photograph it for the world to see. I know because I hear so many people who blame immigrants and poor people and minorities for society’s ills, want to round them up, drive them away, shut them out, knock them down. I know because people still stomp on the homeless and beleaguered rather than lending them a hand, a shoulder, an ear.

In remembering the Holocaust today—the nadir of recent times—I tightly embrace and revere the diversity in this nation and, most of all Calvin who, unlike anyone I know, is as pure and sparkling an example of what I find best in humanity: the ability to love, accept and embrace everyone, no matter who they are, what they look like, or where they're from.

From 1941 people with physical and mental disabilities were killed at a psychiatric hospital in Hadamar in Hesse [one of six similar locations]. Declared "undesirables" by the Nazis, some 15,000 people were murdered here by asphyxiation with carbon monoxide or by being injected with lethal drug overdoses. Today Hadamar is a memorial to those victims.

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

gratitude again

Every so often I sink into an abyss. My tumble is often triggered by clusters of my son’s seizures, all of which make me fear for the worst. Perhaps you can imagine. When this happens, my innards feel heavy, my surroundings harsh. Even bright sunlight knifes me, the shadows it casts longer and sharper because of its acute winter angle. Inevitably, something yanks me out of the hole, gives me hope, and I can begin to feel gratitude again, or perhaps it's gratitude itself which lifts me up. Here are some things I’m grateful for these days:

Happy boy. Spicy margarita aside a newish friend. A sweet drunk seated to my right. Our home. Lobster. Seizure free afternoons. Remedy. Cannabis flower and coconut oil. Dimmers. Charity. Rolling fires. Michael’s work. Home invasions of a particular kind. Furry dog, sweet dog. Hubby. Thick sweaters. Andy Borowitz. Going commando. Lamb. Photos from our wedding. Grandpa’s tavern lamps alit. Clocks. Books. Curiosity. Old friends. Writing. New friends. Calamari and kimchi. Getting to know someone. Liquid fabric mender. David Bowie. Rubber boots I can just slip my feet into. Expletives. My octogenarian friends. First boots for Calvin. A beautiful winter garden. Dinner guests on the way. Beth. Five dollar down pillows. Joni Mitchell in ways you could never imagine. Our wonderful POTUS. The Onion. Seat warmers. Art. Scotch broth. Artists. Good laughs. Dinner at someone else's house. Irreverence. Strange panoramas that expand space. Thoughts of spring. Nicole's yellow cake with chocolate whipped cream frosting. The feel of Calvin’s skin.

Photo by Michael Kolster

problem solving

I don’t even know where to start, I’m so tired. I guess I’ll get right to the point and say that the one thing that is harder for me than taking care of my non-verbal, incontinent, unstable, legally blind, eleven-year-old boy who has medically refractory epilepsy, is taking care of him when he is sick. When he's ill, its just one problem after another.

Calvin woke at one-thirty this morning and vomited. He was crying, so I knew the retching wasn’t due to a partial seizure. Unlike some children, I can’t lead Calvin to the toilet or tell him to spit up in a bucket or bedpan. I have to crawl into bed with him and struggle to keep him on his side so that he doesn’t choke on his vomit and aspirate, because he seems to want to be on his back when he throws up.Then I do my best to try to catch his vomit in a towel. As he grows it’s getting harder to restrain him and it doesn't help that he doesn’t understand. Being in bed with him when he is sick means that I usually get puke in my hair and on my face. Thankfully, it doesn’t bother me, I suppose because I am his mother.

Afterwards, the poor kid was rubbing his head madly, so I gave him an acetaminophen suppository in case he had a headache. He went back to sleep for an hour then woke up and vomited again. At 3:45 a.m. he had a three to five-minute tonic-clonic (grand mal) seizure. During these, his body stiffens then convulses—every inch of it. Michael and I watched his fingers and lips turn blue from lack of oxygen. I held a bottle of lavender under his nose and the convulsing stopped.

Clobazam, the benzodiazepine we are gradually weaning Calvin from, has a long half-life (18 hours for the parent drug clobazam and over 50 hours for one of its metabolites) so we gave him his morning dose two hours early to thwart a second grand mal. This strategy has seemed to work in the past. Unfortunately, forty-five minutes later Calvin awoke to a complex partial seizure, one in which he does not convulse but instead is semi-conscious with a rapid heartbeat and shallow, if any, breathing. I took a rectal temp which was 100.3 degrees, so I gave him an ibuprofen which he couldn't swallow at first. Calvin’s complex partial seizures have been long these days—upwards of three and four minutes—and I always fear they will “secondary generalize” into a grand mal, meaning they will spread from an isolated part of his brain to his entire brain. With this in mind we decided to give Calvin the dreaded Diastat—rectal Valium—which usually does a good job of stopping clusters of grand mal seizures, but can wreak havoc with Calvin’s behavior and sleep patterns because of its addictive nature, short half-life and rapid withdrawal.

Calvin hasn’t had any more grand mal seizures so far today, but in all he has had five, long, partial seizures. After the second one I gave Calvin 8 mgs of THC rescue med, but it did nothing to thwart the others.

By mid-morning, I had a thought: what if we gave Calvin a temporary increase in his Keppra? No neurologist has ever mentioned this option, so I emailed Calvin’s doctor and he confirmed that the method is sometimes used to control spates of seizures. I have no idea why neurologists don't, as a rule, equip their patients with these helpful strategies; I’m just thankful that I am a problem solver. So, we gave Calvin a half tablet of Keppra and will give him another half tab between his lunch and bedtime doses.

So far, no additional seizures since eleven-thirty this morning, though he’s really not himself. So I ask myself some of the same questions my dear friend Elizabeth did about her child last night:

is he sick? is he suffering a withdrawal episode? is it puberty? is it the recent increase in Keppra? is he outgrowing his cannabis oil doses? is it the fever? is it the acetaminophen-ibuprofin-clobazam-keppra-THC-THCA-CBD combo? WTF?

As usual, I can’t answer my own questions. All I can do is have a hunch, which is that this rash of seizures is a benzodiazepine withdrawal/puberty combo, and there's not too much I can do but what I've already done.

Although, next, I think I'll research acupressure and epilepsy. You readers know anything about that?

Photo by Michael Kolster

different ships

“We may have all come on different ships, but we're in the same boat now.”   

― Martin Luther King, Jr.

I know what it feels like to be marginalized, to live, in some small ways, on the fringe of society because of my son’s disability. I know what it feels like when my child doesn’t get invited to birthday parties and can’t participate in play dates or sports, concerts or plays. I know what it feels like to be in a group of mothers exchanging stories about their children’s accomplishments while I sit silently trying to smile through the conversation until it moves along to something new. I know how it feels to be gawked at by strangers as if my kid and I came from another planet, and what it's like to wonder if others think I'm culpable for making my child the way he is.

Perhaps I was born with my hunger to know other. As long as I can remember, I’ve been drawn to those unlike me. The town I grew up in was mostly white, but I had a childhood crush on a cute Chinese American boy and was friends with an African American girl who lived nearby. I befriended introverts, Jewish kids and gay kids who were still in the closet. In my sophomore year at college, my best friend was African American. After college, I kissed a Muslim in Montparnasse, fell in love with a black man—we were together five years—befriended Japanese women, Filipino and Chinese co-workers, gay men and women, octogenarians and loners. It feeds my soul to visit with homeless folks and our town’s intellectually disabled, to acknowledge that they exist and matter when so many people simply turn away. I understand that intimately knowing people who are different from us can enrich our lives, communities and nation in meaningful ways.

I suppose my predilections might be why I was so offended by the words of two local school board members responding to a request by our town’s Jewish community to include three Jewish holidays on the school calendar, mostly to serve as a gesture. Two board members, both middle-aged white women, had this to say:

“I don’t know how jazzed I am about having outside groups put their information on our, um, school calendar.”

And this:

“Those Muslims, um, some of the other unusual, or, not the mainstream religions, I guess, have holidays and ... long periods of time ... and, I don’t know ... I mean, we’d stop having school pretty soon.”

The women’s ignorant rhetoric, particularly the use of the words outside groups and those Muslims, to describe good people within our community, incensed me. Regrettably, the first person who came to mind after hearing their statements was Donald Trump. I sat and wondered how folks like these can populate our public institutions in this fairly diverse nation of ours. I mused a while longer on Trump, describing him in my mind ...

boorish. cocky. misogynistic. racist. bigoted. caustic. jingoistic. inflammatory. pompous. vulgar. thoughtless. hot-headed. bully. fascist.

... and then I imagined the words that likely spew from his mouth to describe his fellow Americans. I started typing them here, but then erased the long and vile list of contemptuous slurs I reckon he uses to refer to women, blacks, rural whites, gays, Muslims, Hispanics, poor, homeless, disabled and addicted people. Suffice to say I have little doubt he'd call my son Calvin a retard.

... and then I wondered why anyone would toy with the notion of having someone like Trump lead our nation when, clearly, he loathes most of us. I'm having a hard time getting my head around support for such an offensive person for president, a man with seemingly zero humanity, a man who likely detests the very folks who say they'll vote for him. How is his behavior and manner of thinking worthy of our praise, of receiving our nation's highest honor?

In my mind, the best leaders show restraint, patience, thoughtfulness, kindness, compassion, empathy, mindfulness, composure, intellect, courage, tenacity, respect—people like our current POTUS and Martin Luther King, Jr. They are champions for society's underdogs, apostles of justice, crusaders for us all, even the little guy, like my boy Calvin, and of people who practice different religions and who came on different ships.

Yep, we're all in the same boat now. Give me a skipper who won't throw me overboard simply because he doesn't respect my religion or like the way I look.

day five hundred

Today marks five hundred days since Calvin last had a daytime, conscious-onset grand mal seizure. In that time he has had only one daytime grand mal seizure, which occurred during a nap. This stretch is notable for several reasons. One, because for about three years he used to have a seizure between 5:00 and 6:30 pm every week or two or three, often while he was taking a bath, and we'd have to haul his stiff body out, dripping wet, and carry him to our bed as he convulsed.

This long stint absent of daytime grand mal seizures means I don't fret as much that he might have one at school and, as a result, my body and mind are far more relaxed. Also of note is the fact that during these five hundred days, we've weaned Calvin from ninety percent of his benzodiazepine, an addictive drug that in my opinion should never be prescribed for children except as a last resort, due to the body's tendency to habituate to the drug and the drug's proneness to negatively impact cognition, memory and behavior. My hunch is that benzodiazepines, along with other antiepileptic drugs, can have a permanent effect on development by slowing the learning process past windows of opportunity.

You may wonder what accounts for this nice hiatus. While Michael remains somewhat skeptical I have zero doubt that it's due to the homemade THCA cannabis oil I've been giving to Calvin for the past two years. As soon as we raised it to its current dose, his daytime grand mal seizures disappeared. He still has grand mal seizures at night every week or so, but he is safe in bed and we don't have to worry about moving him.

Unfortunately, this past year we have seen the return of brief daytime complex partial seizures which might be due to a variety of factors including puberty, growth spurts and overall weight gain, benzodiazepine withdrawal and/or epilepsy's tendency to morph and progress when not completely controlled. With this in mind I've taken two steps with the hope of lessening these seizures: I've doubled Calvin's bedtime THCA oil and increased his bedtime Keppra by 125 mgs. So far so good.

In the meantime, we celebrate five hundred days as a huge milestone marking an improved quality of life.

dad

Twenty years ago today my father died from complications of multiple myeloma, cancer of the bone marrow. He battled and suffered the disease and its treatments for nearly five years, if memory serves. When he died he was only seventy years old; he'd have turned ninety-one this year had he survived.

I think of my father often, perhaps daily. I'm reminded of him by Calvin's blue eyes and long, skinny legs.

The masses of rhododendrons I've planted in my garden are there because of my father's love of the shrubs, banks of which flanked my childhood home and which Dad and I used to prune and dead-head together.

I think of Dad whenever friends bring me homemade applesauce—one of Dad's specialties that filled the house with the sweet aroma of cinnamon and that he liked to serve warm over vanilla ice cream. I, like he, have a fondness for sun on my shoulders, for gardening, eating dessert, camping, walking on the beach, and making wisecracks at every opportunity.

Dad seemed drawn to those unlike him; he had friends of all ages, races and religions. I take after him in that regard, too. And though raising six kids was stressful considering his modest income, Dad seemed to like kids and enjoyed coaching for many years. He was very affectionate with me. No doubt Dad would've loved cuddling with his grandson, Calvin.

I miss you, Dad. You were one of the good ones. It's really too bad you had to leave us so soon.

Me and my dad, circa 1965

back to the neuro

Tuesday morning we took Calvin to see the neurologist. The last time we were there was nearly two and a half years ago. You may wonder, since Calvin has medically refractory epilepsy (seizures that are not completely controlled with the use of medications) why I’d keep him from seeing an epileptologist for so long. My answer is simple: in the nearly ten years since Calvin’s epilepsy diagnosis and having seen three neurologists, I’ve learned that what they do best, besides being smart, kind and compassionate, is to prescribe pharmaceuticals. And why not? There aren't many other options for kids like Calvin, the brain and epilepsy are not well understood, there is no cure, and there is a plethora of antiepileptic drugs to try. Many of the medications neurologists prescribe, however, are not clinically tested on children, yet it is common practice to prescribe them anyway, as monotherapy (one drug at a time) or as polytherapy (more than one drug at a time). In my experience, when the seizures don’t respond to a particular drug, or don’t respond adequately, neurologists typically advise increasing doses, seemingly no matter how many drugs are on board—two, three, four—even if the doses are already above what might be considered safe and effective therapeutic levels.

Here, it is prudent to underscore—what with all of the medical world's caution and skepticism over the safety of cannabis—not all antiepileptic drugs are tested for their interactions with other drugs, including other antiepileptic ones. Furthermore, some drugs are FDA approved before their long-term side effects can be discerned and, despite that, are often prescribed, simultaneously, for children. I've never heard of a drug not being prescribed because another one is on board. My sense is too that it's rare for neurologists to advise discontinuing a drug; it does happen, though perhaps after parents tell horror stories of impossible side effects and/or insist that a particular drug might not be working or, indeed, might be exacerbating or inducing new kinds of seizures. Lastly, my impression is that neurologists seem to downplay the drug side effects, a perception that I share with scores of other parents of kids with epilepsy. Perhaps this is due to their general optimism—they seem to be a hopeful lot—or perhaps their zeal. Either way, it can be a liability.

I think it must be hard, maybe impossible, for neurologists who don't know what it is like to live with a child who suffers from medically refractory epilepsy and the drug side effects, to fully understand the balance we parents juggle between the lofty goal of seizure freedom and the simple desire for decent quality of life. I wager if they spent a week—even a day—in our homes, they might come away with an entirely new perspective and a different set of strategies or goals.

Unfortunately, that isn't how things work, and Calvin has maxed out his dose on several of the ten antiepileptic pharmaceuticals he’s tried, and has gone far above the recommended therapeutic level on most of them, and suffered. He showed signs of initial liver failure from one drug, Depakote, that I questioned for its tendency to do just that, the selfsame drug which turned him into a zombie, and he has exhibited signs of adverse cognitive, behavioral, developmental, gastrointestinal, ocular, dermatologic and central nervous system side effects from every drug he's taken.

These past ten years I've made it my job to research every drug we’ve considered giving Calvin and then to research them further once he begins treatment. I wouldn’t say I have a photographic memory, but I seem to have a knack for remembering side effects, half-lives, therapeutic levels and some of the pharmacokinetic details such as Tmax (the time after administration of a drug when the maximum plasma concentration is reached). I also memorize the levels of drug in milligrams per kilogram of Calvin’s weight so that I can accurately compare his overall dose over months and years while adjusting for his weight gain. I feel I've got a good grasp on handling Calvin's treatment without always consulting a neurologist, though I am in no way recommending that other parents follow my example. Everyone must chart their own course.

Even so, Michael and I decided it might be time to check in with Calvin's neurologist and touch base since Calvin's seizures have been on the rise.

The main result of our meeting with the neurologist, besides asking him to look in to stem cell and glutathione therapies, was that, on my recommendation, we'd consider increasing Calvin’s Keppra dose if his seizures don’t subside after having recently doubled his bedtime THCA cannabis oil. It’s still too soon to tell how effective that measure will be in the long run, but since the doubling he has had isolated grand mal seizures rather than clusters, and his stint between grand mal seizures has been slightly longer. Regrettably, the past several months Calvin has been having more complex partial seizures, including yesterday and today, so I decided to increase his Keppra slightly to return it to the same mgs/kg it was one year ago, to compensate for Calvin's weight gain.

My sense is that the gradual increase in Calvin's seizures is partly due to his benzodiazepine withdrawal, which my gut tells me might be worse if not for the cannabis, though sadly there is really no way of knowing what the culprit is for sure.

We are scheduled to return to the neurologist a year from now. My hope is that by that time Calvin will be completely off of the benzodiazepine and having fewer seizures overall. From what I’ve heard, the cannabis performs better in the absence of other pharmaceuticals, specifically the benzo, clobazam, which utilizes the same liver enzyme (cytochrome P450 or CYPs) to metabolize, in essence making the benzo and the cannabis compete.

Bottom line is that my husband and I believe that the onslaught of pharmaceuticals during Calvin's brain's most important developmental years may have done more damage than the seizures themselves; no doubt the drugs have affected his behavior in most adverse ways. I just hope the side effects are reversible, but there's no guarantee because, plain and simple, nobody, not even the neurologists, really know.

A few of Calvin's discarded medicine bottles. Photo by Michael Kolster

home invasions and innervisions

We managed to suffer another home invasion Saturday night. The culprits came to our door armed with coq au vin, Caesar salad with homemade dressing and croutons, and melt-in-your-mouth lemon curd cheesecake. You see, we’ve been nurse-challenged more of late and therefore unable to get out much, so some of our favorite lovelies, known for home invasions whenever we’re housebound, brought the dinner party to us again.

It had been a long day for me, feeling a bit queasy from, I figure, too little sleep in general and perhaps one-too-many bourbons the night before, which is rare for me. Irritating my circumstance was an agitated son who shrieked and coughed much of the day, seemingly in prelude to a seizure.

By day’s end, I was feeling frail and found myself in tears an hour or so before the invasion just listening to Stevie Wonder’s Innervisions, specifically, Living for the City, about a young black man from Mississippi who heads to New York in search of work. The vinyl recording includes an excerpt of the man being falsely accused of dealing drugs, being arrested and put in prison for ten years, plus extra verses of his life after prison. Whenever I listen to the song I visualize the young man and his family: good, kind, honest, hardworking people who are poor, though well-kept, well-raised and strong. Then I imagined the millions like him who’ve been snagged in our nation’s racial caste system, swept up in an epidemic mass incarceration of black men. I stood there watching Calvin crawl on the floor and wept for the disruption of so many black lives, the loss and abuse of these precious sons and daughters, brothers and sisters, and the ignorant notion that they are to blame for everything White that is thrust upon them. Then I thought of San Francisco and, after that, my mom, and cried that much harder having missed them both for so long, and having just lost Mom to Alzheimer’s in autumn.

Thankfully, the home invasion lifted my spirits, simply sitting around a table with my smart, humorous, progressive friends. We mused about some of the conservative candidates running for president, their hateful rhetoric and blatant attacks on women, Muslims, Mexicans, Syrian refugees and the disabled. We talked about our deplorable governor and his brazenly racist comments about black men and poor white women, including his lame defense, and the equally bigoted backing from a statehouse rep. We went on to lament the wacko, jingoistic vigilantes claiming native lands as their own. And just so we didn’t let the bastards get us down, we laughed a lot and touched on photography and writing and sons in college before the conversation digressed to swapping the letters of our first and last names, which made us laugh even harder. Our friends asked about Calvin and I gave them the update on his cannabis oil treatment. I told them Calvin has had only one daytime grand mal seizure in nearly 500 days despite being in active benzodiazepine withdrawal and taking a fraction of the antiepileptic pharmaceuticals compared to two years ago. Knowing that I suspected an imminent seizure, one friend looked sad, perhaps even worried, when I got up to check on Calvin because I heard him whimper in his sleep.

Still feeling fatigued, and knowing that our friends understood, I said my goodbyes early and went upstairs to bed. As I laid there, gazing out the window to a slate-gray sky, I heard the murmur of happy voices in the room below, and I smiled. But before I dozed off, I worried about Calvin some more, thought of Stevie's profound innervisions, and fell asleep wishing there were less fear, hate, oppression and greed in the world.

If you cannot view the video below you can watch it here on You Tube. You can read the full lyrics, plus annotations here.

sacrifice and reward

I cried sometimes it hurt so bad for so long, and with only seconds to catch my breath before I had to go on. Daily, my mind and body were crushed, lungs on fire, muscles churning and burning until I felt I could sink like a stone if I let myself. As many as seven, eight and nine miles I’d swim in a day, lagging behind the others whose psyches and wills were at that time stronger than mine. At just eighteen, I became worn out, torn up, undone, and I asked myself, what for?

It’s days like today, stone cold and gray, that I walk under a stand of pines and note the unmistakable reek of chlorine seeping from vents in the brick wall of the college pool. It smells warm and heavy and I imagine, if it were visible, I’d see it resting like a blanket of mist at my knees. The scent spurs memories of a million laps, of aching limbs, stinging eyes, a hungry body and a broken soul. But the sacrifice was not without reward.

I have little doubt that those years of double workouts, of killing myself as many as four hours a day, have helped me better face the challenge of raising a chronically ill child. It’s hard to say what else could’ve done as good a job teaching me diligence, resilience, dedication, ambition, mindfulness, the grace of triumph, the art of loss and, perhaps most of all, that I am strong—physically and mentally—beyond what much of society still tells women they are capable of being.

While I was pregnant with Calvin I swam a mile most days. Perhaps it’s what nearly killed him. Then again, maybe it’s the very thing that kept my boy alive when he was on the verge of drowning inside me, his little brain missing parts, so not well equipped to survive.

Now, instead of thirsting to finish first or swim a lifetime best, I coach my little boy. I still get up every day before six, often when it’s dark outside, to give him his morning medicine on time. In his wake I do tiresome laps around the house, swimming through the monotony that is caring for my son, and lift his fifty-five pounds until my muscles ache and my tendons burn. Though at times I want to, I don’t give up, just keep on plodding and pressing and looking for ways to beat this thing, conquer his seizures, win the prize of a healthier child.

As if swimming, I’m still holding my breath, perhaps saving it for the distance my boy and I still have to go. So I pace myself instead of sprinting and, like in open water, I bury my head and try in vain to think of anything but the pain. I taste the brine wondering if, maybe, it's what buoys me. When I meet rough waters, I work harder to better slice through the mire. And if I’m met with a breaker, I dive head on into it, where below its surface I can pause instead of being carried away, then I come up, catch my bearings and go on.

Photo by Michael Kolster

hold fast

In memory of nine-year-old Christina Taylor Green, Gabrielle Giffords, and six others murdered five years ago today by a gunman shooting into a crowd. Christina Taylor Green was my close friend's goddaughter, and her mother, Roxanna, had been a bridesmaid with me. Christina's parents, having become avid gun control advocates since their daughter's murder, attended President Obama's recent gun control announcement. Today, my thoughts are with them, and the thousands of parents in this country who have lost their children to gun violence.

Snow was falling silently when the grim news came.
Woman shot, six others dead—
one child.
Tears of sorrow filled our eyes.
 
Hold fast.
 
She, younger than I, is lost in a coma.
Lost to her children, lost to her husband,
suspended in some cold inner space
we can never know.

 They try to embrace but cannot reach her, not now.
She is somewhere else.
 
Hold fast.
 
What about the girl?
Her happy presence replaced by emptiness–
silent and desolate.
A hollowness in her mother and
father’s palms—in the core of their beings.
Memories endure of stroking her

 chestnut hair, of her smile,
of tenderly cupping her face in their hands.
Echoes of her sweet voice remain.
 
Hold fast.
 
I have my spouse and I have my child,
all touching in our own warm bed,
my arms wrapped around my boy,
his around my neck, our hearts beating together.
His sweet breath brushes my face,
his supple legs curl up as
little feet knead my belly.
 
I Hold fast.

Christina Taylor Green, September 11, 2001 - January 8, 2011

everything's going to be okay

The following is an excerpt from a work in progress, which describes an event from when Calvin was two:

Michael and I leaned over our seizing boy offering soothing words of encouragement.

“C’mon Calvin, you can do it ... everything’s going to be okay.”
 
But after twenty-five minutes of seizing, all I could think about was the brain damage that had begun to occur and how my only child’s vital organs—his heart, his lungs, his brain—might soon begin to fail. At that point a pediatrician entered the scene and, after I gave her a quick summary of the day’s events, she sat down to do her best to thread the butterfly needle into my son’s tiny body, which was rife with spasms. She appeared to be meeting as much trouble as the nurses had in finding a vein. In my angst, time expanded, then froze, the air in the room growing stale. Finally, her needle punctured a vessel and a bolus of fosphenytoin bled into Calvin’s vein. I wondered if it burned or, if Calvin’s seizing brain didn’t feel it, if his body might have some painful awareness of the foreign liquor commingling with his blood. I put my hand to his forehead, which felt warm and clammy, and I waited, with much fear and hope, for something to change.
 
Still, the seizure raged for another twenty minutes in the cool, sterile room. Everything had seemed to take on the jaundice of the beige curtains and floor, lacking all natural color, like my child’s oxygen-deprived skin. It seemed clear that the emergency medications had failed my boy. His delicate fingers, toes and lips were tinted blue-gray, his skin pallid, his body pumping in rhythmic bursts. In my research of epilepsy I had read that the longer a seizure lasts the harder it is to stop, like a runaway train speeding downhill without brakes, only to derail and smash into a billion shards. It seemed we had no choice but to see our boy crumble and fade away right before our eyes. The only solace was in hoping he was unaware of what was happening to him, though we couldn’t be sure. In my mind I thought, he’s going to die now, and I knew Michael was thinking the same. Trying to blot out the presence of strangers who made no further attempts to save our boy, we wrapped our arms around him and whispered.
 
“Everything’s going to be okay, Calvin, you’re doing such a good job ... Mama and Daddy love you. We love you so much.”
 
We stroked his arms and legs, brushed wispy blond locks back from his face. I began kissing him in the nape of his neck. You love it when I do this, don’t you, and I realized it might be the last time I’d press my lips into his warm flesh.

Photo by Michael Kolster

the here and now

We thought we’d be stuck home yet again on New Year’s Eve, not that that would’ve been a bad thing; we’d had nice times before, the two of us alone or with dinner guests to cook with or for, like back in San Francisco when we ate sick food with the Gendy-Willeys in Michael’s Mission District home. At the last minute, though, Calvin’s uber-nurse, Beth, came through; she's home for a stint from the Islands and had some spare time to give. So, we nabbed the chance to escape to Georgetown, a twenty-five minute drive from home, to join our buddies, Luke and Sarah, in the hours before their other guests arrived.

We’d been invited to their nighttime gathering, though couldn’t stay late, seeing as though Beth would need to leave shortly after five. Nellie came along for the drive, winding through thick fog rising from earth and river, the winter’s first snow adorning trees and hills along the road. I felt anxious the entire drive, Calvin having had a morning grand mal plus a few partials just as Beth arrived. It didn’t help matters that we were trailing what appeared to be a drunk driver—just above freezing at three o’clock in the afternoon on wet streets—or perhaps someone texting at the wheel.

As we pulled into Luke and Sarah's drive, the large oaks and granite escarpments dressed in white, we watched as their son Jacob’s grandparents helped him down the steps and into their car. They were taking him to their place for the night.

He’s so much like Calvin, I thought, watching Jacob step cautiously while in his grandparents’ grasp.

Michael and I hugged them wishing them a merry new year, then watched the three of them drive off into the fog.

Inside the house, our hosts asked how we'd been.

“I’m feeling kind of anxious,” I replied, mentioning Calvin’s fragile condition, the psychological and physical burden of the long winter vacation, the crazy drivers, the icy roads outside. Seeing my worry, Luke and Sarah swooped in for a group hug.

“It’s a Christy sandwich!” Luke exclaimed, and I melted into their embrace as Michael looked on, a fond smile on his face.

Immediately, I felt better. The bourbon Sarah had poured me hadn’t hurt, nor did the image of her in a full-length striped lycra dress, furry fingerless gloves and elfin slipper-socks.

While there was still some light, we stepped outside into the cold. Luke reached into a large box of fireworks and handed me a Roman candle with which to light a pile of wood he'd doused with gasoline. I felt honored to be given the torch and, with one eye closed, I aimed good and hard on the pile of kindling twenty yards away. He lit the candle's end and on the fourth flare I hit my target igniting the fire. Everyone cheered, then Sarah took a try, after which we toasted a new year and watched Nellie race crazily in the snowy woods trailing some sort of wild game.

As we huddled close to the fire, giant oaks fanned above us in exquisite bouquets of branches and hardened buds. Mist drifted and settled on the river below the butte. There, in the quiet of the snowy glen, the four of us shared a moment most sublime, the beginnings of a bonfire singeing our toes.

The hour we were given to spend went too fast, and so I suggested that Luke and Sarah—Jacob safely with her parents for the night—come home with us and leave a note for their impending guests telling them to make themselves at home, enjoy the fire, the food, the grog. Luke joked that we should call Beth and tell her that we had car trouble and that we’d be three hours late getting home. We all laughed and hugged and said how much we loved each other. We reminisced about our first New Year’s Eve together four years earlier and how we’d poured molten lead into water—Luke's family tradition—making strange shapes from which we tried to decipher some deeper meaning. And though I can't recall the exact words, I remember Luke thinking my lead shards, arranged in a particular way, looked like they spelled out something like jesus child fuck yeah, and how we laughed so hard at that.

Our spirits livened, we said our goodbyes and drove off, our toes nearly frozen. At home we ate more goose-pork-chicken-kale soup and the same salad I make every night. Both were delicious. As I sat in front of the fire in our wood stove, I looked through Michael’s river photos and we spoke of spring and Nellie and New Year's and Luke and Sarah, and of how wonderful they are and how we’d love them even if not for Jacob and Calvin being like two peas in a pod. We consciously hoped for a better year ahead for all of us, though being forever grateful for what we have right in the here and now.

Photo by Michael Kolster