On Pain and Presence

Note: This was originally published by Relief Journal, in their Spring 2021 print edition. My dad died on November 19th, 2021.

I saw a man at Trader Joe’s yesterday who looked exactly like my dad.  Actually, no, he didn’t look like him — not really — but he dressed like him.  He was wearing a red plaid button down shirt (cotton, not flannel) tucked into jeans that were just a bit too baggy and a tad too blue to be in style, with a belt and white New Balance shoes.   If he was doing a dry run for a costume party and his plan was to dress up like my dad, his ensemble was spot on.  Staring at this stranger in my dad’s clothes, as he rifled through the onions and picked over potatoes, sent such a spasm of pain through my chest, my back rounded in surprise.  I thought briefly about abandoning my cart by the butternut squash but we needed eggs and milk and bread and I didn’t want to return home empty handed.  I lingered a moment longer, watching, and then I trudged on, leaving my dad’s doppelganger to dig through the garlic.  

I became a birth doula the same year my dad started showing the early signs of Alzheimer’s Disease.  He was 63.   At the time, my husband and I were primarily preoccupied with simply surviving after having two babies in swift succession and adjusting to my unpredictable work schedule to worry all that much about my dad asking the same question three times in thirty minutes.   He’s just a little forgetful, I reasoned.  No big deal.  Now, years later, I wonder at my response.  The truth is that it pained me to hear him ask the same questions over and over and over again.  Also, it annoyed me.  How many times can I possibly tell him how old the kids are and how I’m liking my new job?   It signaled something looming beyond our line of sight.  I couldn’t see it yet but I could sense it and I didn’t want to make room for it.  I didn’t want to sit with the possibilities it portended.  So I forced it down, swift and decisive, a small pebble in my gut.

My first gig as a birth doula was a disappointment.  Forgive me, that’s not true.  What I mean to say is that after more than twenty hours of laboring and a lot of lingering questions, the mother had to have a C-section.  Her umbilical cord was unusually short, it turned out, and the baby, tethered as she was, literally couldn’t get out of the birth canal.  So after all the exhausting hours of holding the mother’s hips and rocking back and forth and whispering reminders that her pain had a purpose, I wasn’t there for the best part.  The best part is always, always, the euphoric, incandescent, madcap moment when the baby emerges rigid and reaching after all those cacophonous hours of crying and bleeding and shaking and all those months of fearful, joyful anticipation and there is a rush and hush in the room as the baby takes its first breath.   Everyone inhales at the same time and all the molecules and atoms in the atmosphere fuse and collapse and expand until every living thing seems as one.  It’s magical.  It’s magical because the mother’s longsuffering invites the bystanders to behold the glorious payoff and no one is going to miss it by checking their phone or wondering what to make for dinner.   It’s communal and it’s capacious and it’s holy. It’s the best part and I missed it. I was back in the birthing room alone, struggling to stay awake, waiting for news from the OR of a safe delivery.  

Pain is necessary sometimes.  Important, even, if unwelcome.  Acute pain protects us from further injury when wounded, signals us to slow down when we’re sick and I haven’t attended a birth without it.   Acute pain makes sense to me.   I understand it and I know, on an intellectual level at least, that without it, I would likely suffer.  

Chronic pain on the other hand — pain that lingers long after a threat is gone — puzzles me.   I am daily perplexed by inexplicable pain, likely due to the autoimmune disease I’ve had for years, and I cannot make heads or tails of it.  Again and again I take all the facts and figures I can find and rub them between my fingers like beads on an abacus.  I spin and push them back and forth across the bar as I try to find a way to make the numbers add up.  I’m not alone.  Doctors, neuroscientists and psychologists all seem equally stumped to explain, if not how, why such pain exists.  I’ve heard it said that chronic pain is an invitation.  An invitation to presence. To awareness.  Presence and pain might seem bizarre bedfellows but some days I can see it that way.   Days when I’m feeling especially expansive or magnanimous.   Most days I think it’s absurd.

The fourth birth I attended as a doula was what experts call a “traumatic birth.”  When the doctors finally managed to coax the baby out of his exhausted mother, his limbs were limp and his skin was gray.  When I saw him I thought he was dead.   I remember the mother turning toward me, the tendons in her neck taut, and I stared back at her, breathless.  I mentally dove into the stacks, searching wildly in the memories of my training, desperate to find something, anything, that would tell me what to do.   But I resurfaced again and again with my hands empty.  I couldn’t remember my instructors, or my textbooks, mentioning anything even close to a scenario like this.   

An ambulance arrived to transfer the baby —  who, as it turned out, was not dead —  to another hospital where he was placed in a medically-induced coma and would eventually make a full recovery.  The father rode with the baby and I was left to sit alone with the mother while she wept.  I stroked her arm and tried to stifle the panic spidering through my chest.  Eventually, mercifully, one short sentence from my training opened like a web in my mind, catching up all my tangled thoughts: A doula’s role is presence.   I needed to be present.  I didn’t need to know what to do or why it happened or how to make it better.  Her suffering summoned me to simply sit beside her and bear witness to this unbearable pain.  It didn’t seem like much and my own abdominal muscles with tight with terror.  But for the next hour, while we waited for news, I ran my fingers through her hair and adjusted her blankets and whispered into her muffled sobs, “I’m here. I’m right here. I’m here with you.”

In 2018 my parents celebrated their 50th wedding anniversary.   My dad was not yet living in the full-time care facility where we moved him the following year, and we planned a small party.  We spent the afternoon combing through old photographs and newspaper clippings and reading the congratulatory cards that had arrived from friends and family near and far.  We sipped drinks, sang songs, broke bread.

What I used to say is that the anniversary party was the last time I saw my dad but that’s overly dramatic and anyway it isn’t really true.    What is true is that when I returned several months later something about him seemed irrevocably altered.   There was no longer any past or future for my dad.  We could no longer sit around after breakfast, talking about old times.  His long-term memories, which had held fairly fast as the disease progressed, had splintered off behind him.  I mentioned the birth of our first son, reminding him of how he and my sister had jumped in the car and made their way to Seattle in record time to surprise us all and welcome his first grandson, but he simply stared back at me across the table, slack-faced and unresponsive.  The future, — two minutes, two days, two years hence, it didn’t matter — once an open road before him, had likewise vanished, socked in by fog and so many neurofibrillary tangles.   There was nothing left, it seemed, but the moment we were in.  

The last time I was able to visit him —  in February, before the pandemic — I pulled open the cumbersome, alarm-laden outer door at the facility where he lives vowing to be fully present, fully with him, for the duration of the visit.  People often posit that visiting a person with dementia is pointless.  They won’t remember it, the reasoning goes, so why bother?   Maybe those people are right, who can say?  But I find the logic flawed.  Children do not remember the years when they were babies — or even toddlers, really —  but we believe our presence is important for them all the same.  We believe, and studies affirm, that in some primal, instinctual, nameless way, the nearness of a benevolent adult matters in the life of a child, even though they won’t remember it.   Why should the same sort of nearness not matter for an adult with Alzheimer’s?  Surely my dad somehow benefits from my nearness; from sitting inside my loving gaze for forty minutes on a Friday afternoon; even though he won’t remember it hours – even minutes – later.  

I managed to remain present during my visit that day but I also realized why it’s so hard.  It’s hard because it hurts.  Sitting with my dad, my phone on silent and nothing to distract me, meant that I had to experience an agony that fanned out all the way to my feet.   We sat on the little couch in his room and I cut his fingernails and combed his hair, fetched his slippers and settled him under a soft blanket.  All the while various versions of him flitted in and out of my mind’s eye.   I could see him swimming with me and my sister while on a vacation when I was in highschool.  We were, perhaps, too old for it but he let us balance on his shoulders and jump.  He threw us in the air and showed us how to do wild, legs flailing, underwater handstands.   Then I saw him pulling back the string of his compound bow in the backyard, shaving in the morning with his Philips Norelco electric razor, demonstrating his tried and true technique for tamping the maximum amount of ice cream into my mom’s dainty tea cups.  

My lungs squeezed as I remembered all these renditions of him and a scene from the movie Run, Lola, Run bubbled unbidden to the surface of my mind.  I haven’t seen the film in years but as I sat next to my dad that day, I remembered a moment in the middle of the movie when Lola screams.  She screams so loud she shatters all the glass in the room.   I looked over at my dad dozing next to me and I imagined him sitting by himself after I left or maybe wandering alone in the garden and I suddenly wanted to scream like Lola.  I wanted to scream so loud and long and high that it split the curtains and exploded the lights and canceled out even the possibility of a place like this. 

Don’t fight the pain.  It’s what I always told my laboring mothers.  Your pain has a purpose, I would say.  Surrender to it.  Let it come.  Sitting alone in my car with my groceries yesterday I tried to take my own advice.  I tried to make room for my sadness next to the cereal and the soup and the soy vanilla ice cream but I couldn’t manage it.  I couldn’t convince myself that my pain had some higher purpose.   A laboring mother swaddles her child at the end of all her anguish and I know that a day is coming, and soon, when we will swathe my dad in burial clothes.  And yet my sorrow still beckoned me to give it my full attention.  I sensed that it was, after all, a baffling invitation to presence.  So I sat with it.  I sat in the Trader Joe’s parking lot, feeling that small pebble I had swallowed all those years ago swell and surge within me.  I wrapped my arms across my midsection and rocked back and forth, a doula to my own despondence.  I counted out a few long slow deep breaths and told myself not to be afraid of how much it hurt.  Surrender, I told myself.  Let it come. Let the squeezing, crushing, obliterating pain come and do its deep work.  

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