weight of the world

Saturday night, I listened to my son wail until he was nearly hoarse. I watched him writhe in some unknown pain. The event, whether cramps, hallucinations, night terrors, or most likely migraine, went on for five hours. None of the measures I attempted—acetaminophen, ibuprofen, THCA oil, CBD—helped to quell his misery.

Downstairs, our dinner guests kept me sane with their loving support through a difficult situation. Hell, we even had some laughs in-between sips of wine, bites of Michael's melt-in-your-mouth porchetta, mashers, green beans, and hearing Calvin shriek. It didn't help for me to remain upstairs with my boy; he's getting big, so someone's liable get hurt if I were to crawl into bed with him, though I did make one failed attempt. Luckily, he's safe in his padded, paneled, netted-canopy bed, able to flop around into positions most comfortable for him. At one point, during my frequent checks on him, he had drifted off briefly while sitting up.

Calvin finally fell asleep close to eleven. Regrettably, three hours later he had a grand mal followed by another one at six a.m. I can't remember the last time he had three serious events in less than twelve hours. He had been doing pretty well lately.

As I laid next to Calvin in the wake of his first seizure, I wondered if perhaps he feels viscerally the weight of the world, causing him anguish or triggering seizures. I thought of the damage our reckless president is doing to the already volatile Middle East. I feared for the animals and people in peril from Australia's rampant wildfires. I worried over a friend who is suffering from late-stage cancer and the side effect from its heinous treatments. I fretted over recent hard conversations with a dear friend regarding prejudice, judgment, the virtues of political correctness, and the hurt felt by both of us. I wondered if Calvin could feel me.

Then, after spending too much time brooding in bed next to my son, I remembered a girl I had met at the grocer earlier in the day. A thin, blond, sweet seventh grader, she had smiled shyly and waved, saying, "Hi Calvin," as we passed her in front of the cold cut case. Holding onto Calvin's hand, I stopped to return her greeting, introducing myself to her father. She explained having met Calvin last year while visiting his junior high school's Life Skills class where she made friends with another student very much like our boy. It dawned on me who she was and that, a few weeks earlier, I had met her mother and another woman who had come to our door sharing info about Jehovah's Witnesses. At first, I'd been a bit sharp with them; because of Calvin, I'm prone to growl whenever anyone tells me that "everything happens for a reason."

"I am not worthy of my son's suffering," I declared to the proselytizers, my heart pounding with contempt for any suggestion that Calvin's misery is some divine plan, a notion which to me seems no less than sadistic. I went on to explain my disdain for organized religion, my disbelief of a merciful or judgmental, anthropomorphized god, stressing my conviction that the Bible is metaphor written by men to explain the unexplainable and to further their power and control over others.

The Jehovah's Witnesses had been kind and forgiving, respectful of my beliefs. I went on to let them in and led them upstairs to meet Calvin, who was in bed resting. There, we exchanged ideas about god, the afterlife, and hell on Earth. Some of our beliefs seemed to overlap. They were loving to Calvin and most sympathetic to our burden. It was a short visit, and as they were leaving I gave them both hugs, plus my card, which has a photo of me and Calvin printed on one side and my blog and email addresses on the other. Two days later, one of them wrote to me, explaining the discovery that her daughter knew Calvin.

Back at the grocer, I said farewell to the girl. I thanked her for being so kind to Calvin and for making and keeping friends with his former classmate, who is non-verbal, developmentally delayed and seizure-prone, just like Calvin.

"You're going to save the world," I told the girl, firmly believing in my assertion that this gentle creature standing before me in boots and a little overcoat, this old soul with wavy blond locks swept back into a bundle, doesn't have a mean bone in her body and loves everyone, just like Calvin.

Lying next to Calvin that night after his miserable pain episode and first of two seizures, and holding the images in my mind of the girl's rosy face and that of her mother's, I drifted off to sleep with the weight of the world—Calvin—in my embrace.

Years ago, photo by Michael Kolster

friday faves - pain and inspiration

My brother Scott is a world-class Master’s swimmer. He’s in his early fifties still swimming times nearly as good—if not better in some cases—as he did in College. Scott has competed in countless Master’s Nationals and over the years he’s broken a few world records in his age group.

Our dad was an athlete in his own right, running a 4:28 mile at the Naval Academy back in 1948. He was adept at hurling a javelin with the innate grace of his lithe animal self—a six foot four inch, one hundred and seventy pound gazelle. As a family man my dad continued to run for exercise and the sheer joy of it. Along the way he’d stash roadside aluminum cans in plastic bags and donate the proceeds to my swim team. He lifted weights and repeated hundreds of crunches, sit-ups and push-ups—the only bald-headed old dude I’ve ever seen with a washboard stomach.

Tragically, my dad developed cancer at the age of sixty-five. I don't recall him ever being sick until then. Several courses of toxic chemotherapy for multiple myeloma, a type of blood cancer, took its toll on him. I remember my mom describing the time he had to give a bone marrow sample. My dad denied anesthesia when the doctor bore a hole deep into his hipbone to extract a core. My mother said his clothes were completely drenched in sweat from the immense pain, but that he had remained silent and stoic throughout the procedure.

At one Master’s Nationals, when my father was still alive, my brother won his best event, the two-hundred backstroke. He received a gold medal, dangling from a wide red white and blue satin ribbon. He sent it to my father in a velvet-lined case along with a hand written letter on ruled yellow paper. I remember reading it and weeping. Scott described the event, my father not having been able to attend the swim meet. He spoke of slightly trailing his opponent, his muscles and lungs burning. He wrote how he worked through the pain thinking of the unimaginable agony my dad was suffering from the cancer, the chemo. He focused on that image and nothing else, just being one with the blazing pain, but for my dad. My brother poured it on in the last lap, his adrenaline taking him hard to the finish, muscles on fire, shredding, fatiguing. He won the race.

My brother has always been a great inspiration to me. He’s helped me win races, swim my fastest times, break plateaus. I often think of that letter he wrote to my dad, and of my dad’s suffering. Both of these men, through example rather than advice, have inspired me to work through the pain and suffering in my own life, and now in my life with Calvin. I only wish I could share that same magnificent influence with my own son ... and with others.

Originally published 05.02.11.

stardust and golden

Well then can I walk beside you
I have come to lose the smog
And I feel as I'm a cog in something turning
And maybe it's the time of year
Yes and maybe it's the time of man
And I don't know who I am
But life is for learning

We are stardust, we are golden
We are billion year old carbon
And we got to get ourselves back to the garden 

—Joni Mitchell, from Woodstock

Every once in a while I see someone who reminds me of my dad: tall, thin, mostly bald with a band of white hair like a wreath slung around the back of his head. My dad would have been 87 this year. He was a pillar of strength and he should have lived far longer had it not been for the cancer that had completely consumed him by the age of seventy.

Michael and I watched a movie last night that made me think of my dad, of when he was sick. Christopher Plummer was the man who, in some ways, reminded me of him. As I watched the scenes of Hal in the hospital, Hal with his son, Hal at home in his hospice bed, I regretted not being at my dad’s side in those final weeks and days. When I said as much over coffee this morning, Michael reminded me that my family had kept things from me, had tried to shelter me, hadn’t told me until he'd returned home that—weeks before his death—Dad had been in the hospital, twice. I’ve always resented that. Perhaps I’d have jumped on a plane to be there sitting next to his hospital bed as my father battled pneumonia, been able to walk with him down the shiny linoleum hallways wheeling his IV along on a tall, aluminum pole. But my family, thinking it would be better for me, didn’t let on, as opposed to honoring my right to know as Dad's youngest adult child.

And so today I am missing my dad and thinking of that last telephone conversation we had from across the country on the day he died. Perhaps he’d known I’d been with him in spirit every day while he was sick. Every night, in my San Francisco flat, I’d dim the living room lights, roll up the white wool Berber rug, light some candles and a joint and perform a sort of meditative rain dance to this one particularly beautiful, eerie, cancerous song, hoping for Dad to finally be at peace. Then I’d cry for him.

Thinking of you dad. You are stardust, you are golden. But then again, you always were.

Me and Dad, 1965