by Kristen -

Breathe in, breathe out

 

Several months ago I asked my friend, the author Robert Hughes, how he deals with writer’s block, which had been plaguing me for months.

He suggested that I force myself to write for an hour every day, to fill the page with anything that came to mind.  Through the discipline of doing so, something would eventually click, and I’d find my way.

I’d just begun to follow his advice when I got sick.  Really sick.  And while I wasn’t conscious for the worst of it, I’m told I was critical for a number of days.  There was a very real possibility that I wouldn’t make it.

In the hospital for over two weeks, I’m still recuperating, gradually regaining my strength.  This isn’t the story I’d been struggling for months to express; I’m so rusty I’m not even sure I can still write at all.  But this is a story I need to tell.

*****

It came on suddenly, with a moderate fever I thought signaled a recurrence of the flu I’d suffered in February.  A flu swab test proved negative, however, and with no cough, no vomiting, and my lungs sounding clear, my doctor believed it was a virus that would run its course.

Two days later I could barely stand, and with my husband at work that Sunday, I called 911 for the first time in my life.

I remember very little about my stay at Highland Park Hospital, where I was quickly transferred to the intensive care unit.  Snatches of that experience are all I have: an oxygen mask placed over my face; my husband, Andy, stroking my hand; his quiet conference with the doctor across the room.  Later I learned that my breathing had been alarmingly labored, my heart rate accelerating in time with my fever as it spiked to over 104.

Early Tuesday morning, my respiration still unregulated, intubation was deemed necessary, to, as the nurses told Andy, “give my lungs a chance to heal.”  Drugs to calm me as the breathing tube was inserted were only marginally successful; apparently I fought the procedure bitterly, struggling against the restraints at my wrists, unable to relax despite powerful sedating drugs, like propofol, and the painkiller fentanyl, coursing through my system.

My condition remained unchanged for two and a half days.  As explained to me later, I was taking 60 to 70 breaths per minute, when 12 is normal; my heart rate should have been between 55 and 62, but was consistently over 120, surging to 140 when my fever soared.  Most worrisome, my carbon dioxide level had risen to 99, when the high end of normal is 45.

Even with the ventilator and massive antibiotics, begun intravenously when I first arrived at the hospital, I was not improving.  In fact, I was steadily getting worse.

What had at first appeared to be a bad flu or perhaps a simple pneumonia was proving much more serious.  The nurses had, in fact, initially told Andy that I probably did have the flu, that oral swabs like the one my internist had taken in her office were often inaccurate.  He wanted desperately to believe this, that with rest and antibiotics I’d be home in a few days.

His faith was shaken, though, when he realized that even in my delirium I sensed how sick I was, telling him on Monday evening — although I have no memory of doing so — that I didn’t think I’d get better.

By Wednesday they’d moved from referring to my sedation as “twilight” to “paralytic,” anything, it seemed, to avoid the term “medically-induced coma.”  But that was the truth of my condition.

*****

My daughter Natalie came to the hospital every day from her home in the city, hovering at my bedside in the ICU, joined by my husband between stints at his office.  Friends and co-workers came, too, murmuring words of encouragement to my unconscious form, sitting with Natalie in the waiting room, asking questions of the medical staff.  As hours and then days passed, though, the mood shifted from concern to palpable alarm.  They didn’t even know what precisely they were fighting; the results of a culture to determine what bacteria had attacked my system had not yet come back.

Then, mid-morning on Thursday, five days since my admission, my attending physician found Natalie in the ICU waiting room.  Preparing to call Andy, he instead wasted no time in addressing the next legal authority listed on my intake form.

“Your mom is very ill,” the doctor said, taking a seat beside her.  “We need to move her to Evanston,” he went on, referring to a larger, teaching hospital about 40 minutes away.  “And we need to do it right now.”

Days later, I learned that he anticipated a “last resort” treatment called an extracorporeal membrane oxygenation, or ECMO, which would essentially bypass my lungs, and use a pump to circulate blood through an artificial lung back into my bloodstream.  It was a procedure my local hospital was unequipped to perform, and the window of opportunity was narrowing fast; they feared I may soon be too unstable to move.

“We need your permission to transfer her,” the doctor stated.  “But there are substantial risks in moving her.”

Stunned, Natalie stared at him for a moment, then asked, “What are the risks?”

The doctor spared nothing in his response.

“She may not make it to Evanston.  She may stop breathing in the ambulance, and we’ll be unable to revive her.”

I will forever regret that my daughter had to hear those words, to endure that trauma, and assume a responsibility so grave.  No child, even a 28-year-old adult, should have to.  I have envisioned that moment countless times since, and the horror of it has not diminished.

My daughter is remarkable, though, strong and resilient, and immediately gave the necessary consent.  Fortuitously, my close friend Marla arrived minutes later, embracing Natalie as she related the latest news.  By the time Andy reached Highland Park soon after, his 90-year-old mother had also arrived, and was holding Nat’s hand as they both cried softly, my mother-in-law’s tears allowing her granddaughter to finally shed her own.

It took three agonizing hours for the medical staff to prepare for my transfer, disconnecting me from numerous IV lines, alarms and monitors.  Apparently my condition was so tenuous that even the shift from hospital bed to ambulance gurney was dicey.  Finally, though, I was on my cautious way: no lights, no sirens, the risk of an accident with such fragile cargo outweighing the urgency of transporting me quickly.

A fierce band of friends and family converged on Evanston Hospital as word of my move spread, via calls, texts and voice mails.  Marla followed from Highland Park, where she’d spent part of every day that week, as had my friend and co-worker, Janice.  Natalie’s dad and step-mom, Jeff and Mary, dropped everything and drove from Wisconsin to lend their support.  Darren, my soon-to-be son-in-law, grabbed an Uber and rushed to Evanston, joining a vigil no one could have anticipated just days earlier.

And they waited.

Relieved and elated when I survived the trip, they now hoped to avoid the ECMO procedure, an invasive surgery offering no guarantee of success.

Nearing 7 p.m., a resident delivered the first piece of good news in days: my carbon dioxide level had dropped to 70, based on the blood draw taken upon my arrival.  By the time Andy left for home at 11 o’clock that evening, it had dropped further, to 53 on two separate draws.  The ECMO procedure was no longer indicated.

For the first time since Sunday I had started to improve.

******

I remained in an induced coma for four more days, to allow me to heal and the antibiotics to work on what they now knew was the Legionella bacteria, which had caused massive pneumonia in both my lungs.  I’m told we’ll probably never know how I contracted such a rare, waterborne bacteria, most famous for the dozens of illnesses and two deaths it caused at the American Legion convention in Philadelphia in 1976.  While the serious flu I’d suffered a month and a half earlier had probably weakened my immune system, my county’s department of public health agent conceded that the origin of Legionella infection often remains unknown.

What everyone agreed on, however, is that it quite possibly could have killed me.

Nine days after my initial call for paramedics, Andy and Natalie were called to the hospital to provide familiar faces as they pulled me from the coma.  Unfortunately, I’d spent the week I’d been sedated in a maze of discordant, menacing hallucinations, which I still vividly recall when I allow myself to remember.  I woke confused, sullen, in pain, believing my husband and daughter had conspired to trap me in that frightening netherworld, that they were somehow responsible for a ghastly experience I didn’t understand.  Learning that this reaction is not uncommon doesn’t fully alleviate my shame at the initial distrust and anger I felt toward two of the people who love me most.

I was forgiven, though.  It took days for me to fully appreciate the impact my illness had had on those who love me, how close they came to losing me.  As awful as those first days of recovery were, I had missed the worst of it.  Seeing my face in a mirror several days after I awoke, I hardly recognized myself: gaunt, haunted, my hands too weak to hold a cup of water.  I’d lost 16 pounds, and couldn’t walk unassisted for nearly a week.  When I came home after 15 days, including three in the rehab unit, I needed a caregiver for several days.  Soon, though, I felt strong enough to navigate my home, albeit slowly, on my own during the daytime hours while Andy was at work.  Almost immediately I began physical therapy to reclaim the muscle tone I’d lost, and have gradually found my strength.  Three months later I still tire quickly, and am working abbreviated days for now.  It will take six months or more, my internist warns, to truly feel whole again.

*****

I’d love to report that this ordeal was life-altering, a revelatory event of directional clarity, elevating me to a place of serenity and gratitude.  And I am grateful.  Of course I am.  It still stuns me that I actually could have died, that Legionnaires’ disease can easily be fatal.

But Hallmark moments don’t often happen in real life, in my life, at least.  Or perhaps I’m too jaded now to appreciate them.  My friends know I’m not a fan of platitudes, to which all special needs parents are subjected, again and again.  “Everything happens for a reason,” or “There are no mistakes in God’s world” come distastefully to mind.  Yet one of the cards Mary sent brought me to tears with its profound simplicity, precisely what I needed then to hear: “Breathe in.  Breathe out.  Repeat.”

In these weeks of recuperation I’ve come to understand a few things.  I’ve been a caregiver for years, imperfectly, stumbling, but with my son’s profound needs ever-weighing on my soul.  I recognize now that I’ve never truly learned to “self-care,” as we women are instructed to do.  How easily I’ve become mired again in minutia, the worry and entanglements that are part and parcel of life.  I haven’t even been consistent in writing an hour a day.

Sometimes I long for those first, tremulous weeks back home, safely cocooned in the blanket of recovery, my weaknesses indulged, nothing expected of me but to care for myself.

To learn how to breathe again.

To be well.

But the price for such escape is too high.

And I hold tightly to the countless moments of grace I experienced amid the pain and disquiet of this illness.  These are gifts I won’t forget.

The innumerable ways my friends nurtured my husband and daughter during the most frightening time of their lives.  My friend Kary’s gentle, undemanding support, soliciting the prayers of so many while still guarding our privacy.  My husband’s partner shouldering the burden of their business so Andy could focus on me, while his wife brought meals to the hospital to ensure that he was eating.  My daughter’s friends, who walked her dog while she was at the hospital, left her protein bars, and flowers, and notes of encouragement; her fiancé, Darren, who was her rock when her world was crumbling.

Janice, filling our fridge with food; her many texts of encouragement to Natalie, Andy, and me, even as she prepared to move cross country; my co-workers’s willingness to assume my duties for weeks on end, without question, complaint or resentment.  The dozens of cards, flowers, and gifts that arrived daily; the meals prepared and delivered.  My children’s dad and stepmom’s love, reminding me how fortunate we are to share an unbreakable bond; their extra visits to Daniel so he wouldn’t feel my absence as strongly.

Marla using her medical knowledge as envoy between the hospital staff and my family; her daily texts and calls to my brother and sister-in-law in Tennessee, keeping them informed as they worried and prayed, miles away; the lunches and company she offered those first days home, filling in gaps in the story, my understanding of what had happened to me; shuttling me to my first haircut when I was still too shaky to drive.

Andy’s resolve to stay confident, and positive, and strong, despite the dread that nearly consumed him; his visits, morning and evening, as I recovered, himself exhausted from work and the insistent barrage of calls and texts seeking updates on my condition.  His patient calm as I came back to this world, his assurances that everything, everything, would be all right.  His admission, voice breaking, that he feared he would lose me.  That he didn’t know how he would survive if I did not.

And Natalie, my shining star, who was there for me every single day, who tacked photos of the people I treasure on the wall in front of my bed as I lay unconscious, believing that, somehow, I would sense how deeply I was loved, how much I had to come back to.  Who ran interference with family and friends through countless texts and calls, who held it together like a warrior even as she was breaking inside.  My daughter, the only one to understand my whispers those first bewildering days, my voice frail and rasping from the ventilator; who massaged my hands and forearms, covered with bruises from wrist to elbow, using lotion she’d remembered to bring from home; who traipsed and fetched and advocated, who protected me, who fed me like a child when I was too weak to feed myself.

*****

Two weeks after I got home Andy took me up to Wisconsin to see Daniel, my first visit in a month and a half.  On the way he recounted the stats of my illness as it had progressed, the first glimmers of hope when hope was yet a rare commodity.  He provided a timeline, a picture of how dire my illness had been.

We wondered together what caused my turn-around just hours after arriving at Evanston Hospital.  Had the antibiotics finally kicked in?  Was my body rested enough now to fight back?  Was it simply coincidence?

Andy didn’t think so.

“I think it was Natalie,” he told me.  “Her message to you as they bundled you into the ambulance.”

I don’t remember hearing it, consciously, with my ears.  My heart, though, heard it loud and clear.

“You’ve got to make it, Mom,” she whispered urgently, her face bent close to mine.  “You’ve got to get it together now.  You have to be there, at my wedding.  I can’t do it without you.”

A month from now Natalie and Darren are getting married.  And I will be there for her.

I will be there.

by Kristen -

Bond in My Pocket

Daniel Craig as Bond

I have rather a thing for the actor Daniel Craig, specifically as he portrays James Bond, and I’d venture to guess I’m not alone.

What woman can deny the appeal of a man so intriguing, so in control, so incredibly capable of handling whatever bad thing may barrel her way, like a unpinned grenade?  Throw in the vulnerability Daniel Craig brings to the world’s coolest spy?  You’ve got the ultimate package, right there.

I suppose such impervious women exist, but I’m not one of them, and I’ve not hidden the fact since I first saw the new 007 brandishing his Walther P99 in Casino Royale.  (Yes, it’s true: I Googled that.)

My husband Andy doesn’t mind my infatuation, as it tends to surface only in the weeks preceding the release of a new Bond film. I imagine he has his own celebrity crushes as well, but has the sense I lack to keep such thoughts to himself, Lara Croft: Tomb Raider notwithstanding.

I would have preferred, however, for him not to learn, a few years back, the extent of my obsession in quite the way he did.

Having wasted the better part of an hour trolling the internet for photos of the actor, I figured, why not print off a few for future perusal?  These choice exemplars I then hid in the pocket of an old down coat I wear when feeding our porch cats or digging around in the garage.

This act of foolishness coincided with the purchase of my first iPhone, and Andy’s admonishments to look after the pricey device. Duly warned, I embarked on my weekly visit to Daniel the next day, stopping first at Whole Foods for a bagel for the road.

Daniel was in a fine mood, and I dug in my purse for my new camera-equipped phone.  It wasn’t there.  Upending my bag’s contents on the floor proved fruitless, as did a frantic search of my car.  Well done, Kristen.  This would never have happened to Moneypenny.

Using the phone at Daniel’s group home, I called my daughter, instructing her to drop everything and contact Whole Foods to see if they’d found the phone there.  Having done all I could do for the moment, I returned to Illinois, phoneless, photoless, feckless.

Meanwhile, Andy returned from work to find Natalie’s scrawled note on the kitchen counter: “Whole Foods — Mom’s phone??” Dismayed, he launched a preemptive house-wide search, through sofa cushions, kitchen cabinets, drawers, seldom-used purses on the back of my closet door.  And the pockets of every coat I own.

Including my old down jacket.

I can’t remember where the phone eventually turned up, a detail eclipsed by my humiliation at the discovery of my secret Bond stash by the grinning, thoroughly amused man to whom I’ve been married for 16 years today.

It wasn’t easy for Andy to make a commitment to marriage after 42 years of bachelorhood.  It took years for me to fully understand his fears, his doubt at his ability to successfully assume the responsibilities inherent in legally binding himself to another person, and her two children, as well.

His devotion was never in question, as he demonstrated his love for all three of us in ways both tangible and implied.  I didn’t understand his concerns as I should have; I saw only the man I knew him to be: one of insight and integrity, of quiet humility and strength.

His wariness was painful, though, as he faltered toward the covenant I valued, as a woman and the mother of young children. My ego was bruised; I wanted to be a catch he was eager to snag, not an appendage reluctantly assumed at the altar.  I wanted to be Helen of Troy.

Marriage after 40, I learned, is challenging.  We both had expectations, dreams already lost and mourned.  But we’ve made it so far.

And I’ve come to realize that his reluctance proved more meaningful than heedless enthusiasm ever could have done.  He was afraid to get married, but did it anyway.  He made one of the most difficult decisions of his life, for me.

Not the fairy tale l’d concocted, certainly.  Yet those have a way of tarnishing over time.  And while the years since our eventual union have offered more challenges than even he dreaded, he remains.

Not Daniel Craig, perhaps.  But, Andy, you’re my James Bond in all the ways that matter.

You didn’t bail when a financial planner told us years ago to expect to pay privately for Daniel’s longterm care, that 80 grand a year for the rest of his life was a conservative guess.

You painted Natalie’s bedroom three times in the house you didn’t want to buy in the first place to achieve the perfect shade of yellow, even though no one could tell the difference but me.

You laid across my hospital bed after my unexpected surgery, cradling me while I cried out in pain.  You recognized the bond I shared with my father, although you met him just briefly before he died.  You held my grief as my mother was lost, inch by inch, to Alzheimer’s; you were the one to wake me gently in the night, to tell me my brother had called, and our mother was gone.

You schlepped to music recitals and theater performances, to therapy sessions and IEPs, from elementary to high school, to schools miles away from home.  You’ve dragged boxes and dressers and mattresses into dorm rooms and first apartments; you’ve soothed disappointments and set backs, the first tender ache of a broken heart.

Your arrival home in the evenings brought Daniel running from his bubbles and videos, laughing and joyous, to greet you.  You taught him to wipe his face with a napkin, and knotted his tie before eighth grade graduation.

It was you who patiently coaxed him through the door of his school in Wisconsin on that fraught, fretful day eight years ago, so he’d be entering his new home on his own terms.

You taught Natalie to drive when I was too freaked to do so; you sat up in those late hours when I was spent for the day, guiding her through the torments of adolescence; you shouldered the cost of graduate school so she wouldn’t be saddled with debt as she entered adulthood.

You held fast during that ghastly meeting with the psycho attorney, when the stakes were so dreadfully high, and endured my screaming in rage and bitterness and fear all the way home from Milwaukee.

You consoled me after a friend I adored turned on me, crushing my spirit and confidence, rueful that you hadn’t been there to protect me from her scorn.

Strapped to a stretcher in the back of an ambulance after our car crash in Wisconsin, you implored paramedics to look after your wife and stepson, because in his agitation, our son might hurt me.

You’ve submitted to innumerable, spontaneous readings of prose I happen to find fascinating, usually during a crucial movie sequence; you’ve helped clarify my thoughts when I couldn’t understand them myself, much less express them coherently in words.

You’ve never once in 19 years said a negative word about my first husband, and have built a solid, generous relationship with him, and his wife; you attended the baptism of their twins, spending most of the ceremony in the parking lot with an uncooperative Daniel, because you understood that Dan should be there, as part of the family.

You told me that as stepfather, you will always defer to my parental authority, but have borne every thorny problem of parenthood by my side.

You assumed a responsibility you never thought you wanted, and have lived up to it every day.  You became a man you didn’t intend to become, and are man enough to admit that you are grateful for having done so.  And as my partner, you’ve made me more than I was before.

For years, when I’ve been scared, you’ve told me, “Relax, sweetheart.  You’re golden.  You’re in God’s pocket.”

I have my doubts about that sometimes.  But no matter.

I’ve got you in mine.  I’ve got you.

ka25

by Kristen -

Two Rooms

Mom and baby Daniel

The first time I visited the place where I would leave my mother for the rest of her life I knew I had been there before.

It wasn’t physical similarity to an earlier place that brought this sense of déjà vu.  The room had no colorful alphabet, or calendar, or map of the United States.  No adaptive technology devices, unless you counted the wheelchair straps securing their frail cargo. There were no computers with modified touch screens, or work desks tailored for special students; no vocational training stations for teaching skills that aim, someday, at employment.

But I knew this room.  I knew this feeling.  I had been here before.

****

She didn’t recognize that she was moving, that her ride in the Medicar that afternoon would terminate at a new facility better equipped to handle patients advanced as far as she has in this disease.  She is unaware that she is surrounded now by strangers, caregivers to whom we entrust her welfare, her reliance on others complete.  Protected, at least, by this disease that strips all else – character, autonomy, achievement – my mother is spared knowing that these rooms will house the conclusion of her days.

She has been gone for many months now, lost to the appalling affects of Alzheimer’s.

I tell myself – for how can I know? – that the worst days are behind her; the confusion, the agitation, the gradual, insidious losses chipping away at her hold on the qualities that had shaped her: her talent as a fashion illustrator; her style sense and skill as designer and seamstress; the classic looks that made her, always, the most beautiful woman in the room.  She doesn’t appear to mourn these losses.  The disease which has stolen these things has the grace to blunt the pain of their passing.

I remember, though.  In that tour of the nursing home, the dayroom filled with fading ghosts who share the vacant gaze of my mother’s eyes, who slump and gape and shout and moan, I knew unsparingly what my mother has lost.  My mind silently rebelled: “It can’t be that she belongs here, that this is what a life of vibrance and accomplishment has come to.  Not my mother…”

And there I was again, in that other room, which I’d visited eight years earlier, several weeks after I was told that the special education program in our home school had proven insufficient for the level of my son’s disability.  There were other programs, alternate classrooms, that perhaps we must consider, which taught not just academics, but life skills…

Of course I knew that this was true.  Autism is a profound disorder.  Lifelong.  I understood.  I did.  I recognized, I acknowledged, I concurred.  Wearing the upbeat smile of mother-advocate, I visited the Education and Life Skills classroom prepared, I thought, to embrace whatever was necessary to help my boy.

The staff was warm, nurturing as they cared for and educated these special children, some in wheel chairs or leg-braces, some who did not speak but communicated by other, atypical means; conditions familiar to me but more threatening as a whole, a strange society my son was bidden to join, branded now as one of the collective of the disabled.

But the peculiarities of my child were not to be permanent, you see, because things would change, somehow — they would.  It would be different someday for my boy.  My son would be the exception, the miracle…

They had just finished lunch, in their contained world-classroom, and a scattering of potato chips lay on the floor beneath their table, unremarkable, certainly, following an elementary school meal.  Yet my whole world came down to that pile of spilled food, the mess and disorder and hopelessness it represented, the gaping maw of an alien world.

Banishing the image to the attic in my mind reserved for such troubling realities, I continued with the orientation, nodding at staff, commenting; agreeing, agreeable, numbed by the cunning strength of denial.

My shelter of self-deception gave way that evening as I struggled to clean another spot from the carpet on the family room floor.  Andy found me on my knees, scrubbing frantically at a stain I knew would be permanent, and he said, “Hon – what is it?  Let me, I’ll do that – ”

“Not my boy!” I screamed. “Not my boy!  Oh God, not my boy!”

****

I’m told my mother has adjusted well, cocooned for the most part in her impenetrable world, but smiling from time to time. Perhaps she remembers some earlier pleasure: a favorite pet, my father’s touch, the enduring tune of a well-loved hymn.

Images flash now through my own memory: a turquoise party dress she’d sewn for me, and the perfectly matched shoes she found, triumphantly, on sale in Fields’ basement; my mother weeping as she cradled our lifeless terrier at the side of a rural Minnesota highway; her knowing smile when I was five years old as I told her, solemnly, that I’d never get married, because I would never leave her.

My son laughs frequently, and often I don’t know why.  But his joy is infectious, and we laugh with him.  Vacation days so eagerly anticipated by other children are more difficult for him; he misses his classroom.  The routine, the schedule, the pre-vocational training at which he excels, have given him an independence I once despaired of ever seeing.

I don’t know if he senses the enormity of what this disorder has cost him, if he recognizes in his own way that there was once more to be hoped for.

But I don’t think so.  Insulated from such doubts and questioning and regret, he is happy in the world he knows.

I will remember this.

 

My mother died on April 28, 2005, at the age of 78. 

by Kristen -

Train Wreck

train

My husband’s parents sold their house last year and moved to a condominium nearby.  We’re relieved that the move is behind them, and they’re no longer burdened by maintaining a home more spacious than they need.

I miss that house, though.  It was stunning.  When Andy and I got married nearly 15 years ago, his parents hosted our reception there, the elegant foyer with its wide, curving stairway providing an idyllic backdrop for toasts and tossing my bouquet.

I remember the first time I took my children to that house, on Christmas Eve a year before Andy and I were married.  I was still getting to know his parents and two sisters then, seeking my place in their family and hoping they liked me as much as I liked them.  They’d met Natalie at a family party the summer before, but were meeting my son for the first time that Christmas Eve.

The evening had all the makings of a magical Christmas, especially for my children.  The house was glowing with lights and decorations, full of welcoming family members eager to include us in their celebration.

The Christmas tree, 14 feet of Fraser Fir soaring in the two-story foyer, rivaled those on display in Marshall Field’s Walnut Room.  A life-sized stuffed tiger with a red ribbon around its neck sat waiting for Daniel under the tree.

Andy’s father had added a new component that year, an electric train set he’d always dreamed of, and set it up to encircle the tree, an engine and six quaint cars chugging along the 25 foot perimeter of the handmade tree skirt.

“We better keep an eye on Daniel around the train,” Andy murmured as we arrived at the house.  “It’s sort of Pop’s pride and joy.”

Wonderful, I thought miserably.  I was already anxious about his family meeting Daniel, my beautiful but erratic little boy, whose unpredictable behavior kept me constantly on edge.  Andy’s parents had no grandchildren, and I imagined my son barreling across their pristine, polished floors, shoes scuffing as he knocked vases from pedestals and grabbed gum drops from antique candy dishes.  Now I had to worry about him breaking an expensive toy train I knew he’d find fascinating.

But it wasn’t only Daniel’s behavior that had me so anxious that evening.  I recognize now how vulnerable I was back then, struggling to find my footing as a divorced mom, a role I’d never dreamed I’d end up playing.  My father had died a year earlier, and my mother was showing the first signs of Alzheimer’s disease.  Keeping my little family together on my own was exhausting, balancing the disparate needs of my children while trying to salvage the stability we’d rob them of when their father and I divorced.

The pressure I put on myself to make this happen was crippling, but I thought that was my role to play.  The least I could do, my most important job in the world, in fact, was making Christmas happy for my children.  Christmas had to be happy, it was supposed to be happy, and I would make it so if it killed me.

But playing my other new role at the same time was almost too much for me: the new girlfriend, this time with kids, one with special needs.  Fiercely proud of my son and daughter, I was still hyper aware of their behavior, and my own, measuring our conduct by a self-imposed standard of respectability and gentility I so wanted to achieve in the eyes of my boyfriend’s gracious family.

As the evening wore on, I was hanging by a thread, smiling, nodding, my most charming self on display for these people whose approval I sought, while inside I was screaming, breaking apart, desperate for this God-forsaken Christmas to be over so I could relax and let my guard down at last.

So much of those early years was like that for me, trying to control the events of my life but often tainting the very memories I wished to cherish.  Holding so tightly to the reins, I sometimes lost sight of where I had wanted to go.  Many times I succeeded in spite of myself, holding it together for my children, providing the experiences I had always wished for them.  But the cost to my psyche was high.  Anxiety became an integral part of me, and letting go of it, especially around the holidays, is still a work in progress.

As it happened, Daniel did enjoy the train that Christmas, watching intently as it made its way around the track, wiggling his fingers in front of his face as he does when he is happy.  He did nothing to disrupt its smooth operation.

But I did.

Leaning close to the tree to admire an ornament, my toe collided with the train’s engine, pushing it and the next three cars off track, bringing the whole happy unit to a halt.  The laugh was on me after all.

And I’m glad.  It was the first real laugh I had all evening.

by Kristen -

Farewell, dear friend

Kimball July 2012

An old friend of mine died last week, a man I hadn’t seen in 25 years until we reconnected briefly two summers ago.

Our lives went in different directions after a tumultuous relationship in my early twenties, though I’ve thought of him many times through the years.  I didn’t anticipate how deeply I’d feel this loss, as I knew he was ill, had known for weeks, in fact, that he was dying.

I was living in the city when I met him, sharing a tiny apartment above a travel agency with a sorority sister from college.  Our place had four cramped rooms, little natural light and virtually no closet space.  But at the corner of Clark Street and Belden Avenue, we were in the heart of Lincoln Park, and that’s what mattered when we were 23.

It didn’t take us long to discover Neo, the new wave, post-punk dance club just a block north on Clark, accessed through a graffiti-covered alley, a scarred metal door, and a bouncer with a couple of safety pins through his lip.

It fast became our go-to venue, close enough that we could run up the street during freezing Chicago winters without coats to worry about losing once we’d made it inside.  The music thrummed, pulsing and frenetic, driving the dancers who pitched and surged across the sunken dance floor.  The eight-foot aquarium behind the bar cast an undulating glow on the eclectic mix of habitués, patrons of the club “serving Chicago’s underground since 1979.”  We were thrilled to be a part of it.

A fight erupted one Friday night on the sidewalk in front of the club, between a guy I’d been talking to and another man, both drunk and throwing ill-timed punches as I stood by uselessly, shrieking at them to stop.

Kimball appeared from the alley then, a Neo regular I recognized from the club but had never met or spoken to.  A large man, massive, really, he moved with surprising, graceful fluidity, breaking up the flailing tussle without so much as raising his voice.  He picked a leather jacket up from the ground where it had been thrown, and gently handed it to my acquaintance, who took off down the sidewalk in humiliated rage.

I took off with Kimball.  We were together for two and a half years.

We couldn’t have been more different, he a self-described “fat Jewish kid from Skokie” with barely a high school education and no family of consequence, a Tai Chi master who wore the full-length robe of his discipline wherever he went.  He worked, at times, as a bouncer, but was often unemployed.  That didn’t matter, though: he was an artist, a painter who conjured mystical tableaus reminiscent of Salvador Dali or Hieronymous Bosch; a reader of Kafka and Ayn Rand and Mad magazine.  He was a storyteller who captivated, a listener whose attention made you believe you were the only person alive who mattered.

Everywhere we went somebody knew him, or wanted to, or pretended to.  He had a mystique, a charisma which attracted men and women alike.  Everyone wanted a piece of Kimball, had a story to tell of his exploits, his outrageousness, his larger-than-life personhood.

And I was his girlfriend, a diminutive blond from the North Shore with an expensive liberal arts degree, a new white Mustang and a 9-to-5 job at a dental association.  Insecure but hiding it, I was often called beautiful but never believed it, a girl of “privilege” desperate to claim my own place, to escape the repressive shadow of a stunning, accomplished mother who had and did it all.

Kimball offered that escape.  I didn’t realize then or care that I was simply trading one shadow for another.

It was doomed, of course.  The bond we’d fashioned from our incongruous lives was not destined to withstand the differences which drew us so compellingly to one another.  I don’t think either of us ever truly considered relinquishing enough of ourselves to accommodate the other’s expectations, our unformed yet firmly ingrained perceptions of what our real lives would be.  When it ended, undramatically, I felt more relief than sorrow.  But I never forgot him.  He was part of me, for a time, back then when I was young.

I recall one summer afternoon, near the end, when Kimball and I waited out a sudden, violent thunderstorm, huddled together inside my car as the rain pounded the roof and sluiced across the windshield, blurring the world beyond, sheltering us, for a few sacred moments, from all that waited on the other side.  Elvis Costello was crooning mournfully on the radio, and I remember the sense of melancholy I felt then, the certainty of impending loss.  Kimball held my hand and sang softly out of tune:  Alison, I know this world is killing you.  Oh, Alison, my aim is true.

He comes back to me now in snatches of memory, his broad face thrown back in laughter, his farcical antics with my roommate’s cat, his confidence, worn like armor, disguising his own scars, the detritus of a broken childhood.

And with him comes a yearning for those impetuous, unencumbered days when I was young, and still believed in limitless possibility, before I grew up and adulthood fully claimed me.  Those days when my parents were still alive, the home base I could run to; before I understood the mercurial nature of happiness, when inconsolable loss was as yet unimaginable, when I was still insulated by the arrogant gullibility of youth.

We saw each other two years ago at a reunion of Neo’s old guard, a gathering of regulars from back in the day I surprised myself by attending on a hot summer night in July.  We told each other we hadn’t changed, which in his case was true.  He was still robust, despite the disease which was slowly, inexorably taking him.

He reminded me of our attendance one Sunday morning at the church of my childhood, which I recall as a sort of last-ditch effort to find some spiritual middle ground on which we could build a future.  My mother was horrified, embarrassed by her daughter’s choice of boyfriends, and bringing him to church, no less.  Although he’d left his Tai Chi robe at home, Kimball’s blue hair was probably too much for her to publicly bear.

But Kimball was intrigued by the service, following the liturgy so familiar to me but utterly foreign to him.  He was touched by the unanticipated sincerity of those bourgeois suburbanites who welcomed him, and asked him to come back.

He told me that was the beginning, the spark that eventually brought him to God, and to a community which embraced him, and became his family.  I smile at the irony, he donning the comforting veil of faith as I suffered the loss of it, when my prayers for my son went unanswered, when I doubted so bitterly the belief I’d never had reason, before, to question.  I’m comforted now, knowing he had a doctrine meaningful to him, which, in a small way, I helped him find.

He was larger than life, larger than my life could hold.  Yet my memories of him evoke a simpler, less complicated time, an unguarded time.  We experienced that together, before the world crashed in, before I learned what I was capable of, what I could hold, when I needed to.

Farewell, dear friend.

Farewell.