Category Archives: Grief & Loss & Bereavement

Dec22

Spotlights, Strobe Lights and World’s End

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Brew_video_still

Still image from The Brew’s “Into the Remembering Sun” music video filmed at Castle Hill, Ipswich, MA

Last night we celebrated the end of the world … or its un-ending, or non-ending … with a local (but internationally touring and recording) band The Brew. Just outside, white-capped waves rolled one over another and crashed onto the dark, wild, and windswept shore of Salisbury Beach. We were dry and safe inside the Blue Ocean Music Hall where the band played their annual holiday concert (with plenty of space for dancing). They are gifted lyricists and classically-trained-musicians-nee-rocker-sons of friends of ours.

They invoked Mayan spirits (who predicted this ending date) with drums. Invited those spirits to be present. Then sang a lot of songs about endings and beginnings. We moved, swayed, sang, and kept time to their offering of pounding music.

So, okay, the world didn’t end last night. Or today. Not literally, though some people in the past weeks, have reason to feel as if private worlds have ended. Oh, and my family knows that feeling all too well … when it seems as if all of human existence has ended, that everything that matters has been erased, or should stop and be silent and pay attention. And in many ways, that’s true. Fragile, tender, vulnerable, fleeting, too-young and beloved parts of our lives are taken away, and nothing can stand up against that loss. Yet we are challenged to continue caring, living, and being engaged in by life.

Some interpretations of the Mayan calendar’s ending date actually talked about transformation. That it was a time of change, rather than cataclysm and destruction. The rising of a new era. That’s another invitation, isn’t it? Renewal. Rebirth. Reclamation.

Perhaps the gift of the ‘end of the world’ prediction is to ask ourselves, what would happen if we lived as if it was about to end? What would we do with that precious time, if it suddenly mattered, because it was limited? What would we release? What would we hold onto? Events in the world remind us, over and over, that we cannot know what is coming next. That NOW is the only gift of time — the only moment — we can be certain of inhabiting.

Brew_video_Still2

Still image from music video by The Brew

Last night, we gathered among friends. Celebrated. Together. If the world had ended … it would have been a good place to be.

But it didn’t end. So my head is full of dreams about another night, another day, and a whole year yet to come. In a season of lights, there is a time and place for the artists’s lights. For the whirling strobe and flashing spotlight. For fingers on guitar strings and keyboards and drumsticks and microphone. For lips and lungs, minds and hearts, to remind us to live. To put our hope and pain into words and share it with each other. To let go. To get sweaty and emotional and expressive under those lights, and remember to BE … to BE the primal and present and passionate mortal creatures that we are.

I offer the copyrighted lyrics of Into the Remembering Sun by The Brew, one of many songs we danced to on the night the world almost ended.

Into The Remembering Sun
by the The Brew (c) 2012

(Verse 1)
On a night when the moon gave no shoulder
Even the wind was feeling old
Even the stars found a cloud to hide behind
Believing my last hope sold
Believing my last hope sold

(Pre-chorus 1)
You come through the gate
Despite what I told you
Still I have no shame
Cause never did I fold

(Chorus)
and I know the world was changing
At least what I had faith in
Burned into the pages time was not erasing now

(Verse 2)
When the days age and relay accounts of love
Knowing now what time was
You and I will be the jewel in the crown
Thrown into the remembering sun
Thrown into the remembering sun

(Prechorus 2)
You run through the gate
Despite what you told me
Still you have no shame
Cause you love me to the bone

(Chorus 2)
And I know your world is changing
At least what you have faith in
You burned into the pages time is not erasing
Let nobody be mistaken
And we’ll walk away so babe don’t be shaken now (?)

(Chorus)
And I know the world is changing
At least what we have faith in
We burned into the pages time was not erasing now
Don’t erase it now

You and I will be the jewel in the crown
Thrown into the remembering sun
Thrown into the remembering sun
Thrown into the remembering sun

Dec17

Comings and Goings: Light and Silence

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Last night, Chris and I stood at the international exit gate of Boston Logan’s Terminal E and awaited Sarah’s return from a semester of college abroad. She came home from Greece with lots of stories and a great craving for iced coffee! We welcomed her home. It’s our first Christmas re-assembling ourselves as a family that must travel to find each other. Sarah is an adult off and about in the wide world, and Chris and I are both living in Ipswich … but always busy somewhere else … so our family rhythms are now timed, in some ways, to her comings and goings.

And Jessie … she is all around us. But there will not be a reunion here. She will not, on this earth, flash her passport at customs, wink at security, and waltz in glittery red shoes through an airport gate, back to us.

There are many sorts of comings and goings.

One week ago, we climbed the swaybacked granite stairs to the top of hill and visited Jessie’s grave. As I’ve mentioned before, it’s a small pink stone set flush with the grass that spreads itself between the roots of two towering maples. It was an international night sponsored by Compassionate Friends, an organization for bereaved parents, to light candles for departed children everywhere. Many communities hosted vigils. Chris and I sat together. Laid on a blanket, staring up at the starry sky clasped between the crooked fingers of the naked winter trees. Lit candles. Put a tiny fir tree by the headstone, and hung one crane on it. Said a prayer full of thorns and hurt and sharp-edge stones and starry nights and hope. There

jessie_headstone

One week later, it seems as if we should hold that vigil again. In fact, its been held over and over, across the country and many other places, to remember the families in Connecticut. We’ve made circles, said prayers, wept, wondered, argued, shouted. I would also say, lighting a candle has its place.

I just don’t have any soft and gentle words for this. I don’t want to light more candles … for little ones … ever, for any reason. Not because of disease. Or starvation. Or natural disaster. Or violence. Not for any cause.

On the other hand, when Toni Morrison spoke at Harvard a few weeks ago, she reminded us about the silence of the Amish community after their own trauma. How they would not speak to the media. Instead their beliefs were enacted through deeds. They attended the funeral of the one who took away the lives of their beloved children. They comforted his widow and children. They raised funds for his family. They razed the schoolhouse full of unspeakable memories, and built a new one. They lived out their compassion and forgiveness, in the midst of their own great sorrow.

I’m not saying that’s the solution for every loss. Just that it is another path, another way, another example among many responses to devastating circumstances.

This weekend, I don’t have words at all. And maybe that’s best. Oh, so many voices already speak into this space, this trauma, this irrevocable tragedy.

And some are comforting. My colleagues found the inside themselves the prayers we all needed to acknowledge the darkness we felt and a reminder to reach, like the winter trees, for the starry night, the promised light.

Yet for me? Though my family knows much about loss, it is not this kind.

So rather than fill the air with more words, I will listen. Listen to silence. Listen to sorrow. Listen to songs. Listen to stories. Listen.

And yes, I will light a candle. It is one act I can offer, when I feel powerless, for my own family and so many others.

Oct27

Boots, Birds and Good-Byes

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On a difficult pair of days, I wore a pair of high heeled boots, hid behind a costume, became vulnerable, wept, prayed, painted my nails, felt incredibly lonely, connected with special people, remembered those who are gone, and was visited by a winged messenger.

There has been a long silence from my end. Again. It’s been a few weeks of logistics such as deadlines, papers due, mid-term exams, and also … yes, pushing through difficult milestones such as the birthday of a departed friend and the anniversary of the fifth year since Jessie died.

Once upon a time, I wrote every day of Jessie’s treatment, and continued every day after she went on ahead of us, recounting the journey of the living. Now it takes me a week to reflect, in writing, about such moments.

Two days come close together last week. Both are difficult. One is the birthday of my friend Rebecca, who died of breast cancer a few years ago, after a long and gracious life, making a difference in the world of so many people, but especially her family, and most of all her two beloved children Ben and Anna.

Her headstone is only a few yards from Jessie’s, beneath a row of maples, at the top of the hill in the cemetery. Rebecca knew their spots would be close together. We visited those cemetery locations together. Stood while Rebecca was alive under the long shadows of old maples on young green grass, listened to songbirds, felt the stir of the wind, heard  its murmur through the leaves. Made memories up there. Had conversations we often couldn’t share with anyone else, about worries and wishes, realities and dreams, sorrows and hopes. Rebecca lived with a persistent form of breast cancer, and navigated a fine balance of hope in the possibility of a cure or new treatment, the wish for longevity and survival, edged with awareness of a threatening and mortal condition. Rebecca talked about a visit she had made to the cemetery with her family; wanting them to have a living experience with her there, as well as a place to visit in later days. We talked about where she and Jessie would both be (Jessie had already died, but we hadn’t interred her ashes yet), and how they’d be close to each other in the spaces between the maples, and imagined how maybe they’d find each other in the place beyond this one. We believed that Rebecca and Jessie would continue to visit those of us that they left behind, back here on earth.

The very next day marked the morning, five years ago, when my daughter Jessie died. Every year our family approaches this milestone differently. It is a markedly individual and separate experience for each of us as sister, father or mother. And of course, it is a day marked by our extended family, friends or her community, too.

This year, on the eve of the anniversary of Jessie’s death, I found myself locked in memory loops and traumatic flashbacks of the last 24 hours of her life. Vivid images or sensory memories came back. They blur together like this: her lung x-ray looking worse that last full day in ICU, followed by visits of specialists to her bedside, and a phone call conference from a small meeting room to consult with Chris and several medical team leaders to decide a recommended course of action, an evening visit from one transplant care team nurses who believed she’d make it, Jessie waking up that night and braking through sedation to kick and reach for me as I told her we loved her and named each member of her family, holding tight to her hand, 2am worries and conversations with a night-shift nurse as we changed her bed padding and checked IV lines and monitors and breathing tube, later kissing her as they took her off the floor — still medicated to a level of unconsciousness while on a portable ventilator — to undergo a lung biopsy, pounding on doors to get through to the room where a doctor waited to tell me she was dying, sitting in a numb disconnected state while a white-coated medical fellow knelt before me to deliver the unthinkable narration of events that transformed a scan room into an emergency operating suite, knowing our friend and minister Rebecca was beside me every step of that morning, and that Rebecca made the calls I couldn’t make, knowing that Jessie died while Chris and Sarah were en route to the hospital, walking with Chris and Sarah together as if through a gauntlet one final time down the hallway to her room in ICU, where it wasn’t Jessie waiting anymore, just her lovingly arranged body under a quilt, so we could say good-bye.

This year, those scenes – running on endless replay in my mind — recurred over and over. Sometimes scene-by-scene as they really took place. Sometimes as if I rewrote history and changed fate.

If only we had the power to change the script, stop the camera, halt the action, decide to make a different ending, give all the actors new lines, new roles … if only it was make-believe, fiction, theater … not real. But it isn’t. It happened. And there are no sequels or second versions of this particular story.

Of course, I have other beliefs about what comes next. About a spiritual life beyond this one … but admittedly, there is a difference between that spiritual and emotional comfort and the very physical and mortal reality of a child you can read to, speak with, hold close, argue with, sigh about, worry over or dance with.

During the anniversay of Jessie’s death, I always set aside productivity. I don’t do school work or client projects. I cancel any appointments, skip most commitments.

Instead, I give myself permission to be in the moment and experience whatever comes. To make space and go through this, because it will catch up to me one way or another.

It isn’t a day when someone needs to fix what’s wrong. It is simply … an unspeakably sad and moving day. A time when we are permitted to weep or pray or be pissed off or act off-the-charts giddy or stay silent. A time when we experience the feelings that are natural to such milestones; and almost every possibly emotion is likely to surface, visit and be expressed along the way.

On such an anniversary, I don’t have many expectations about what will or should happen. I may lose myself for part of the day. Or find Jessie all over again. Connect with Chris or Sarah, if possible, on this day. Retreat. Or be in the company of friends. Mourn. Remember. Acknowledge. And yes, celebrate.

We often try to experience some of Jessie’s best-loved activities on this day. For instance, my friend Martha got me started on the self-care and healing of pedicures and manicures. You may scoff at this self-indulgent choice, but it is a place of respite where no one expects anything of you, someone takes care of you for a little while, you float and let go, and you even feel a little better (or prettier, or something) on the other side of it. I did it again this year.

And this year Chris and I attended the Rotary Masquerade fundraising ball that evening. It happens every year; it just fell on the same night as Jessie’s anniversary. And what better way to celebrate her vibrant spirit? She loved dressing up, going out to dance, to be with friends.

I dared to wear a pair of black high-heeled boots and a short skirt and a wig. I was someone else: pretending, letting go, running away, wishing, and forgetting. And I was myself: grieved, sad, lonely, determined, giddy, connected, remembering, and living ‘in the moment’.

Underneath the black lipstick, fake eyelashes and sequined outfit, I was a mother thinking about both of my daughters: my beautiful intelligent grownup daughter putting away her textbooks and going out with friends to the night-life of cafes in Thessaloniki during her first semester abroad in college in Greece and my younger child whose ashes rest beneath a headstone graven with her name, marked that day by a blossom and a crimson leaf. Under the red-and-black wig, beneath the black spider rings, I was a friend who asked the opinion of girlfriends about makeup and party outfit, wanting someone to cheer and encourage me for risks to self-image when I wore an edgy costume. In the black boots and red silk top, I felt like a vamped-up sexy wife on a date with my husband, spending time together on a day that holds deep and surreal connotations for both of us, in a year that has been full of exhausting transitions, some wonderful, some challenging. Dancing among peers in masks and feather boas, capes and fedoras, applauding the band and jumping to the rockin’ music, I was one member of a club and a community that showed up to raised funds for local causes.

We aren’t binary: black-and-white, one-or-the-other, either-or. We, as humans, are so much more complex and layered and intricate and impossible to unknot or explain. We are just … who we are. And different, every moment, every day.

The next morning, I woke to the rush of wings as a bird fell or was knocked down my chimney. It emerged, eventually, from the hearth in our bedroom to circle and perch in our room. A common bird, familiar and full grown. Dark-tipped, pale-chested, bright-eyed. We caught it in a net and released it safely out the front door.

What do I believe about the sudden fall and flight or that common backyard bird that often visits the feeder outside our kitchen window? For me, its sudden arrival represented the visitation of a winged messenger, a spirit guide. A reminder that she’s here in many ways, and somewhere else, too. (You’re welcome to your own thoughts about it … whether you believe its coincidence or meaningful.)

The eve of Jessie’s anniversary, I relived nightmares. The day of her anniversary, I ‘got by’ in fancy nail polish and high-heeled boots she would have liked a lot. The morning after her anniversary, I participated in a startling and sacred moment.

And I am reminded, and I remind you, that we are connected. Body, mind and spirit. This world and the next world. All of us, always on a journey, perhaps in different places along the way, but not so far apart as we sometimes feel or imagine. Nearer than we suppose.

Sep24

Home

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Yesterday I started field education. That’s an internship, so to speak, working at another church. I’ll gain valuable parish experience and perform new and familiar roles in a congregation that isn’t my home church.

The difficult part of this transition is that Chris and I spend every Sunday morning together, and we have so few chances to spend time in each other’s company, that I miss those mornings … even though we’ve only spent one Sunday apart. In addition, First Church in Ipswich is the longest I’ve ever been rooted in one faith community. We’ve belonged there for 18 years. To spend a schoolyear away from my own congregation, working elsewhere, feels as if the ground is shifting under my feet.

Along with all of the other transitions, it feels as if parts of me are being torn away.

Yes, I know intellectually, that this stretching and moving away from what’s familiar and easy, is all necessary. To work and grow in this new vocation, I must step outside my comfort zone, which in this case is my own community.

It’s what I want. That’s what I tell myself, though I miss what I must give up to be there. Even after one morning away.

So yesterday I spent my first morning in a new congregation. Spent time with both pastors, who have already welcomed me onto their staff. Met some of the congregation’s compassionate and committed lay leaders and community members. Witnessed the youth of this church presenting their summer mission trip to Maryland.

It was all quite nice. Safe. Just not my own faith community.

Finally, at the end of yesterday’s worship service, a friend of mine appeared. I hadn’t expected to see her there. She belongs to this new church where I’m working (I didn’t realize it). One of the ministers is her daughter (I didn’t know that either).

This friend of mine used to be on staff at Winthrop Elementary years ago, where both Sarah and Jessie attended school. She was especially instrumental in Jessie’s successful interludes at school. We all shared an intense journey together each time Jessie made the re-entry to Winthrop classrooms and culture. Her office was often a retreat, when Jessie needed a safe sanctuary to collect herself. They developed a special friendship independent of my connection to this woman. She represents, even now, some of the most wonderful and tempestuous experiences in our long journey with childhood cancer.

So when she appeared unexpectedly in front of me, at the new church, we leaned across the pew and hugged each other. I think I yelped with happiness.

Then I burst into tears. Held onto her much longer than the embrace of friends exchanging greetings. Hung on as if she was holding me up.

I think a knot of emotions all rose to the surface. Every loss and transition I’ve experienced in the last few weeks and months. And maybe ever years.

So much has changed. So much has fallen away. Jessie is gone. Sarah is off at school. I’m starting college again. Chris and I are struggling to find times to maintain connection. And I’m spending a lot of time away from my entire community, including the church which sustained us through everything.

My friend received that grief with a hug. And then I was laughing, overjoyed that I know someone in this new place, this new congregation with whom I’ll sojourn for the next two semesters. Growing. Reaching outside myself for something more. Connecting with something greater. Trying to remain rooted in what continues to be important to me: family and community.

When my friend greeted me in that new house of worship, suddenly I felt as if this new church could also become home.

Can you be at home in two places? Or even more places? Of course you can.

I have many homes. My house on North Main street in Ipswich is intimately familiar, though rather empty now. Ipswich is where I feel connected. First Church’s congregation has been our extended family for years. Already the Harvard graduate school campus feels comfortable.

And now this new church? When I first sat through the worship service, it felt just a little off-kilter and strange. As if I was trying to transpose my former surroundings — the place and feelings of worship among old friends — onto a new and different congregation. Perhaps I was. I * want * to feel comfortable and connected there. But as we all know, as I must remind myself, that comes with time and experience.

Then my friend reached over the pew, and held onto me while I acknowledged everything I’d lost. And everything I’m trying to reclaim. Suddenly, it began to feel more like a new home. Another circle of belonging.

Sep11

Be an Instrument of Peace

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I cannot pretend to have wisdom on a day like 9/11. Nor to truly understand the depth of its impact. Simply to acknowledge that it shook not just those who were hurt or lost, and their families and communities, but all of us. It changed our world view. It rippled out in layers of distrust and violence, but also in ever-growing rings of hope and resilience.

Just yesterday a friend and I remembered being together on the day that the Twin Towers came down. We’ll always remember where we were that day. Wanting to scoop up our children and hold them close. Not sure if the world was ending.

We recalled worrying for a friend who traveled internationally on American Airlines flights to London. Was she alive? As it turned out, she was okay, but she attended the funerals of several colleagues — crew members — for weeks afterward.

We remembered the arrival of a little boy from that devastated Manhattan neighborhood to our daughters’ school in New England. His home was not habitable; his school was closed.

This past weekend, our neighboring town of Rowley dedicated a memorial to 3 townspeople who were on one of the flights. They used as their monument, a piece of steel from the site of the crash. It was moving, yet can never express all that was taken away on that day.

In my father-in-law’s town in New Jersey, where the ferry leaves every morning for Manhattan, the memorial is larger. Too many folk were connected from the small seaside town to the large city center; their passengers worked in those buildings, and many never came home.

And finally, our minister Rebecca Pugh Brown uncovered and recounted for us the story of Andrew Rice, and his journey of loss and forgiveness. His brother David was in the second tower. Andrew was a journalist at the time, and much of the rhetoric after the day of 9/11 didn’t fit his view of the world. He was angry, but he sought some sort of resolution or healing step. His story is shared on the site of The Forgiveness Project.

Then, as David Rice’s summary tells us, “Later, a group called Murder Victims Families for Reconciliation were contacted by the mother of the alleged 20th hijacker, Zacharias Moussaoui, who has been held in solitary confinement in Northern Virginia since September 11. She had a unique request. She wanted to meet some of the families of the victims and ask for their forgiveness.”

We were nervous; scared of our Government finding out, and scared it would be just too upsetting. But finally a small group of us agreed to meet Madame al-Wafi in New York City in November 2002. As we waited in a private university building, a mother whose son was killed in the World Trade Centre went down the hall to meet her. We heard footsteps, then silence. Then we heard this sobbing. Finally they both came into the room, both mothers with their arms around each other. By now we were all crying. Madame al-Wafi reminded me a lot of my own mother, who had cried so much after David died. She spent three hours with us and told us how the extremist group had given her mentally ill son a purpose in life.

One day I’d like to meet Zacharias Moussaoui. I’d like to say to him, ‘you can hate me and my brother as much as you like, but I want you to know that I loved your mother and I comforted her when she was crying’.”

Today I’ll sit in a class at Harvard University called “Understanding Islam.” There is so much education, awareness and bridge-building to be done.

I want to work side by side with Muslim brothers and sisters, to create a world that has space and hope for all of us. That’s part of my work and purpose by attending Harvard. That’s why practitioners of Islam are studying alongside me, for the same reasons.

Today is a tense, emotional, difficult day. It’s easy to step awry.

Instead, breathe. Listen. Pray.

Pay attention to what you’re feeling. Honor it. Acknowledge it. Then let it wash through you. Let it arrive. Let it go. As much as that is possible for you.

Be an instrument of peace today. For yourself. For others. For our world.

Sep8

Beyond Appearances

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Did I ever tell you? About my first time getting painted toes, and my misconceptions about the woman getting a pedicure in the next chair?

First of all, I was introduced to pedicures at the age of … I’m calculating … give me a second to do the math … um, age 41. Basically many “salon” grooming experiences such as waxing, massages, hair-coloring, manis and pedis … are relatively new to me. I wasn’t exposed to them growing up.

As an adult, my girlfriends have slowly introduced me to these wonders. Or talked me into having my own firsthand experiences, and deciding for myself whether I want to invest in them regularly as a personal habit, rather than a one-time indulgence

So one of my dear friends took me out for a day of pampering.

There was an extra reason for this outing. It was just a few weeks after my youngest daughter Jessie had died. I was still shell-shocked and trying to cope with loss. My friends were taking turns getting me out of the house in gentle ways. Going to the salon was a chance to let go, let someone else take care of me. To escape and float.

First we ordered frothy chai tea lattes from our favorite coffee shop: Zumi’s. Carried them next door the nail salon. In our flip-flops, because of course you don’t want to ruin your paint job at the end of the session by shoving them into closed-toed shoes. (That’s one of the things I learned.)

The biggest decision of my day was what color to paint my toes. Should I choose something feminine and pink? Something bold and crimson? Something dangerous and midnight dark?

Or something else? I plucked through the bottles of color. Chose five pigments. Mentally recited middle school science lessons: ROY G BIV. (Hint: that’s the acronym for the colors of the rainbow.) I gathered up a palette of visible light.

After selecting our polishes, we settled into overstuffed chairs and put our feet into tubs of hot soothing water. Sat side by side with books and magazines. Sipped our tea.

Staff women knelt down and started scrubbing and massaging our feet and talking to us. I tried not to think about issues of class and subservience, of manual labor and contrasts of privilege. Me in a chair, and someone crouched low before me. Me paying money for someone else trained to soften my feet, rub off the callouses, and make me pretty and desirable

It was so different from the hospital. From necessary invasive procedures and toxic drugs introduced into a body by highly trained nurses and doctors to save or extend life.

I didn’t want to talk. I retreated into silence. Used my book as a shield to ward off conversation.

The pedicurist settled down with a brush and file and clippers. I held my breath and tried not to mind having someone else handle my feet. But I couldn’t distract myself by reading.

So I glanced up from a novel to peek around. I looked at the woman fastidiously cleaning my toenails. Glanced left at my girlfriend reading her magazine.

Peeked right at the salon’s other pedicure client. She had sunk comfortably down into the upholstered wingback chair next to me. Relaxed. Chatting with the woman doing her nails.

She’d chosen a bottle of lady-like pearlescent pink polish. It seemed to fit her. She was tidy and trim, the glint of silver and precious stones a subtle wink on fingers, wrists and ears. Her short perky hair, tucked behind shell-like ears, was almost platinum. To hide her grey, I told myself, guessing her age to be least two decades beyond mine.

She wore linen. Kept a designer clutch tucked down into the cushions by her side. Lifted one hand and shook a Tiffany bracelet down over her wristbones.

You get the idea. She came accoutered in labels and brands. Ones I don’t own and may never be able to afford.

I couldn’t read anymore. So I closed my eyes and tried to relax through the filing and clipping of my own toenails.

And eavesdropped on the salon client’s amiable banter with the staff member giving her a pedicure. I learned that the woman on my right lives a few towns away. She likes this salon, however, and comes here regularly. She and the staff members are on a first-name basis. They talk about pets and kids and vacations and doctors. She’s comfortable here.

But she has a lot more money than the ladies that own or work in the salon. Or me.

I made assumptions about her. It’s amazing how catty you can be, even in the midst of grief. I wanted to find fault with her…maybe I was understandably irritable, poised to be annoyed and critical. Maybe my judgments were out-of-proportion, because all of my reactions were extreme right after my child died. Or maybe I’m just a selfish and petty person.

The town this salon client lives in has a noticeably higher tax bracket than ours. More conservative politics. Lots of wealth and generations of breeding.

From my perspective, she comes from a bastion of privilege … and I was predisposed to think poorly of her because of it. Or at least to think that she couldn’t possibly comprehend the depth of my loss, and the great yawning chasm that was broken open inside me, just below the surface of my closed eyes and clean toes.

I assumed she was shallow and spoiled.

After all, she was sitting in a nail salon on a weekday afternoon. Gossiping. (I was in the nail salon at the same time, but I was silent, and we were here for different reasons, right?)

Although we were seated side by side, with women crouched in front of us cleaning our toes, we didn’t really have anything in common. Not like my girlfriend sitting in the lefthand chair, who is a college-educated working mom like me, with kids about the same age, and enough flexibility in her schedule to make a date with me in the middle of a workday. A friend who knew my whole broken family and my deceased daughter and was gently trying to draw me out of the house and back into the light of day.

The woman on my right, talking about Cancun, was not like me at all. Obviously she had plenty of time and resources to indulge herself.

She couldn’t possibly understand why I was in the salon. Or that it was my first-ever pedicure. Or that I was living through hell.

Or what hell even felt like.

I tried to stop listening to their stories: the client and pedicurist. I didn’t want to know more about their plans and their lives. I just didn’t have any tolerance for mundane, everyday experiences. Like which doctor to visit to have a mole removed. What airline to take to Mexico. What yogurt to keep in the fridge.

Behind my closed eyes, didn’t I radiate waves of pain and anguish? Couldn’t everyone just SENSE my grief and loss as I sat in the overstuffed chair?

How could they talk about their normal lives when I was mere inches away, full of turmoil and sorrow and anger?

I was in the salon because I was fresh from the pediatric hospital and its traumas. Recently recovering from the experience of planning my child’s funeral. I had a reason … a good reason … to take a break. What was everyone else’s excuse?

The pedicurist dried my feet, put the foamy separator between my toes to spread them out as she worked. On her worktable were the colors I had chosen. I planned to wear red-orange-green-blue-violet on the tips of my feet.

When the pedicurist saw my array of colors, she hesitated. One on each toe?

Yes, a rainbow. I didn’t explain why. I couldn’t, without weeping. But my girlfriend knew the reason. The colors were selected in celebration of Jessie and her bright spirit and her flare for fashion and her favorite song “What A Wonderful World.”

The smallest toes would be bright red.

I opened my eyes as she uncapped the first bottle and dipped the brush into the sunrise-colored pigment.

The woman on my right was just about to have her color applied, too.

She looked my way. Noticed the rainbow of colors down by my feet … because honestly, during a pedicure, you always want to know what color your neighbor has chosen, and wonder if you’d be brave or foolish enough to wear what they have dared to put on themselves.

She arched a plucked brow. Lifted her left hand, curled her fingers into her palm, and adjusted the silver links on her wrist by waving it gently in the air.

She smiled lopsidedly at me with coral lips. This woman with plans to go to Cancun, and a mole that needed attention, and children off at college. And time for a pedicure on a weekday afternoon.

She wanted to chat. I didn’t want to, but I was curious what she’d say.

“You’re using a lot of colors.”

Her sentence lilted upward at the end. An innocent question. Why so many colors?

I inhaled before replying. The honest answer took an act of will and lots of practice. But I was determined not to back away from the truth, even if it was uncomfortable in casual public and social settings like this one.

“It’s in memory of my daughter. She died recently. Leukemia.”

“Ah.” The woman lifted her eyes to meet mine. Tucked a strand of artificially blonde hair behind her ear. Winced and nodded slightly.

I thought that would be the end of the conversation. Death is often of a conversation-killer.

But her eyes held mine, and she continued. “I started coming here a few years ago. Just to treat myself.”

I nodded back politely. Tried to smile. Nicely.

Inside, I ranted at her. So what? Do you think I care? You and me. We don’t really have anything to say to each other. We’re not going to bond over these personal truths that we share in a salon. We have nothing in common.

Yes, I was also here for a break … but our reasons for needing the respite … I could only imagine that they were dramatically different.

Then this woman from a wealthy community a few towns away, from a background of breeding and privilege, and a life that involved tropical destinations and indulgent salon appointments, said, “My older daughter and my husband were diagnosed at the same time. They were both treated. My daughter survived. She’s back in school now, but I had to take time off and go take care of her for a while. My husband didn’t make it. That was a few years ago.”

She looked down at her toes. Wiggled them in the water. She added softly, “I like coming here.”

I swallowed every assumption I’d made about the pampered matron in the chair next to me.

We sat next to each other. Didn’t make eye contact again. Or speak anymore. But we both relaxed, or at least it felt that way to me. As if we were suddenly comrades. With a shared experience that assured that we understood each other on a gut level.

Not strangers anymore, but intimately connected by a common experience. Side by side in the salon, letting someone paint our toes bright colors.

I appreciated – suddenly – that the color of our toes was our warrior’s paint. And the late afternoon moments in the nail salon are a strangely private opportunity, removed from the usual demands of life, to acknowledge sorrow. To breathe and let go. To retreat.

And that this woman, despite all the contrasts between her world and mine, her life and mine, has a lot in common with me.

I was humbled by what I learned that afternoon in the salon.

I realized – all over again, because I had clearly forgotten it — that appearances really don’t tell the whole story. That the woman next to me … whether we meet in a doctor’s office or in a grocery store aisle or on the bus or by the sidelines of a playing field or sitting in a nail salon … has her own story. And each story is worth hearing. And that it’s much more beautiful and colorful and poignant than all the fiction and preconceived narratives I might allow to fill my head.

Her story was right there, waiting to be shared.

Every woman has a story to tell. And we may have more in common than we’d ever guess. If we’ll just listen. Oh, and take the time to sit down and choose some colors and get our nails done.

Never apologize for a good pedicure or “spa day” at the salon. It can change your life. And you deserve it. We all do.

Aug6

Time: Then and Now

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I recently teased my friend’s daughter, almost outraging her, about freezing time so that she can’t grow older than 14 years. She is reaching for everything that comes after this year. High school. Summer jobs. Learner’s permit. Driver’s license. Voting. Graduation. And everything beyond that.

This young lady is the same age that my youngest child Jessie would be, if she’d continued to grow up.

Isn’t it provocative, to consider what you’d do if you could slow, stop or reverse time? It’s certainly been the subject of many stirring and playful plots by authors and screenwriters over the centuries. It could be a thriller or a life lesson, depending on whether you’re Steven Spielberg, Frank Capra, Audrey Niffenegger or H.G. Wells.

Time. Stopping it. Letting it flow.

At some points in life, we’re in such a rush. We want what comes next. Just like 14-year-olds. As children or teens, we’re looking ahead. Counting down. Or counting up, depending on your point of view. Striving toward the goal of being a grownup. Yearning for what seems so enticing.

Yet ask almost any recent high school grad. Wouldn’t they sometimes prefer to relinquish the pressures and responsibilities piling up on top of them, and just be a kid again? With only a child’s concerns? They’re staring adulthood in the face, feeling it shifting their frame of reference, altering their sense of the value of free time and work time, play and respite, labor and effort, privacy and intimacy and friendship and social liberty versus  commitments to college, jobs, loans, housing, relationships and many other binding connections.

A recent graduate might actually wish to stop the hands on the clock. Or spin them backward, to return to what seemed like simpler times.

If you look backward or forward with too much idealism, it’s basically a “grass is always greener” viewpoint. Every moment, past or future, is layered and complex and special and compromised.

In other instances, we’re wise enough or foolish enough, or at just the right cognitive developmental stage (babies, for instance) to loll around in the moment. Bask in it. Splash in it. Submerge ourselves inside it. Be present, here and now.

So recently, I was tugged into my own past during a lively reminiscence with this same 14-year-old girl about our favorite Disney television comedies. Hannah Montana, to be specific.

I found out, much to my shock, that the television series continued beyond the years I’d watched it. Why was I surprised? But I was. I’d missed some seasons, because we don’t have expanded cable access at home. And I don’t have a reason to watch it anymore.

So where did I originally watch this Disney series? When I spent endless hours at Childrens Hospital with Jessie. That was a surreal slice of life, living inside a climate-controlled atmosphere, unable to feel the touch of wind or sun most of time, shut inside an environment with its own rhythms and traditions and language, unlike anywhere else in the world: time lifted out of any other reality, stretching out from hours and days into months and years.

We spent time meaningfully. We conducted plenty of school work and tutoring, reading and writing. Creative projects with fabric and glue and paper and paints and clay and scissors and every sort of craft material you can imagine. Imaginative therapy with music and play and art and talking and role-playing.

But we also spent recreational time playing competitive video games, board games, reading books or watching hours of movie and television, when Jessie felt especially yucky.

Do I miss living in the hospital? No. Do I wish I could snuggle up next to Jessie in bed, watching her favorite Disney shows … yes.

Though the reality of Jessie’s mortality was always palpable, we couldn’t imagine a time we wouldn’t be able to feel her curl up close, still fitting into our laps at age 9, thin and graceful, long and prickly, moody and sweet. It’s impossible to imagine that you won’t be able to touch, protect, play, argue with and console your child. It’s impossible to imagine the emptiness where arms once encircle, or a weight that won’t press against you any more, or a breath, or a voice, or a giggle, or a brush of her fingers.

We’ll say good-bye again again, in a healthy, natural way when Sarah goes to college in the fall.

But a child’s passing? His or her permanent departure? You can’t imagine that will eventually feel like.

Yet the shadow of it  made us pay attention to the time we had with her, and each other, in the moment. In a sense, it focused us. Acted as a lens, and changed how we viewed and measure time. We tried not to take any of it for granted.

Afterward, time changes again. You must grow familiar with her absence hour by hour, day by day, month by month, year by year. Now we measure time, in part, by what came before. And after. For instance, as my conversation with a 14-year-old revealed, there are  years punctuated by High School Musical and Hannah Montana. And years without.

Some children will achieve those milestones that my friend’s 14-year-old yearns to reach. Others will never get there.

Yesterday during the PMC, I watched the results of time’s progression: its blessings and its losses. Survivors posed for a “Living Proof” photo, and many of them were once toddlers or elementary school students on treatment for cancer. Now they’re teens and young adults riding to support cancer research. Like Sarah, many members of those families grow up to study medicine of some kind. I also sought out and hugged sweaty panting adults riding in memory of their children. Others, whom I don’t know, rode for siblings, spouses, or parents.

Then there’s Hannah Montana-time. I realize that some parents don’t approve of the Disney channel. Or Hannah Montana. Mostly on principle. It represents some frothy, silly values that don’t gibe with feminism, for instance. It’s sort of like letting little kids play with Barbies. It demeans, in a way, a more intellectual and wholesome value system. There’s merit, of course, to that position.

Yet it doesn’t make me feel guilty or apologetic for enjoying Hannah Montana with Jessie.  I have written before about the importance of letting children feel like princesses. Role-playing. Therapeutic play. Externalizing experiences and developing scripts and games and roles around it. The potency of magical thinking and the power of fantasy, dreaming and escaping. (Aside: Hannah Montana was a big hit for little girls of Jessie’s age, in part because they could imagine themselves living a double life as “regular kid” and a “superstar.” The possibility of being either ordinary or fairy-tale … or both at once. And in Jessie’s case, perhaps her wishfulness extended to being healthy, as well as all tossing around all those long blonde tresses and rocking those great wigs and outfits.)

So yes, I appreciate the value of my Hannah Montana-years. But I don’t think I’d turn back time. Nor would I fast-forward it.

Here? Right now? A whole lot of life is happening in our family. Sarah’s last month at home before college. My final few weeks before graduate school. The start of a new season and transformation in our family’s life.

The same is true in most families, for a variety of reasons. Summer versus autumn. Vacation and camps versus school, sports, extracurriculars and work. We’re all in the height of this time of year, but it will come to a close soon enough. We’ll all be in the middle of transitions, and the stress that comes with them.

For now, I’ll just savor right where I am. Sure, maybe I’ll sneak in a new episode of Hannah Montana, in honor of Jessie and childhood and the silly ways we escape difficult realities, and the magic of both childhood and a rich adult fantasy life. (Trust me, hours upon hours of Disney channel didn’t steal Jessie’s ability to use her imagination … or mine.) But mostly I’ll try not to tune out; I’ll pay attention to the experience of my living daughter Sarah, who is letting go of childhood and grabbing onto adulthood, even as I write this journal.

Aug3

Why We Ride

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Something short, for a change, I promise.

Below are the lyrics to a song that I wrote for the Coast of Hope bike ride, but they apply equally to the Pan Mass Challenge bike ride this weekend.  Chris and Sarah will ride as a father-daughter team for the fourth year. We welcome your support for their ride, but also know that many of you actively support other causes that are close to your heart.

Let this song speak to you. It is written for any ride, any journey, regardless of the cause or inspiration. As soon as possible, I’ll share the recorded version with music and vocals by a local high school band called Gnarly Charlie. It’s inspired by the many cyclists in my life, past and present, and there are lots!

WHY WE RIDE
by Gail Doktor © 2012

We ride to feel the rush
And the stirring of the wind
We ride on paths unknown
And roads where we have been

We ride through wild silence
In rugged highs and lows
We ride in dappled sunlight
And where the seawind blows

     Oh, we ride for those who can’t
     We ride because we can
     Yes (oh), we ride because we believe
     We ride for one more chance

We ride to push each other
Past distance, youth and years
We ride to push ourselves
Beyond all doubt and fears

We ride in celebration
We ride beyond our loss
We ride to honor others
Or to help a greater cause

     Oh, we ride for those who can’t
     We ride because we can
     Yes (oh), we ride because we believe
     We ride for one more chance

We ride to find a way
To get up when we fall
We ride to finish first
Or to cross the line at all

We ride at softest daybreak
We ride til touch of night
We ride in search of hope
We ride to catch the light

     Oh, we ride for those who can’t
     We ride because we can
     Yes (oh), we ride because we believe
     We ride for one more chance

Jessie and Sarah on bikes, before cancer.

Jessie and Sarah on bikes after cancer.

Aug3

Inspired by Real People (Defintely Not Saints)

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Chris and Sarah in 2011 PMC.

Bandwagon. Soapbox. Call it what you will, sometimes I journal about things that make me passionate. Issues that prompt me to want to act, to find a way to help and make a difference.

We all have causes. I know this and I honor the responses we have each made to the  challenges that have touched our lives. You have yours. I have mine. We can’t do everything, but we can choose to care and support those efforts that move us. We can donate time, talent or treasure to the causes that speak to us.

Right now you’re reading (again) about one of mine. Today I’m inspired by my family (Chris, Sarah, and Jessie) and other cyclists.

In just my town of Ipswich, 11 athletes will participate in the Pan Mass Challenge (PMC) bike ride this weekend. In total, over 5,500 cyclists will participate. They’ll start from Wellesley and Bourne in Massachusetts. Many will end in Provincetown, although there are several routes; they’ll ride between 25-110 miles over one day and 153-190 miles over two days. They come from 36 states and eight countries. There’s approximately one volunteer working to support every two riders.  The youngest riders are 13 and the eldest is 88.

The PMC is the single largest athletic fundraising event in the nation. Last year, about 230,000 individual contributions were made to support these cyclists. This year’s goal? Raise $36 million for the Dana Farber’s Jimmy Fund. This event also provides almost two-thirds of Dana Farber’s annual revenue to support groundbreaking cancer research; 100% of tax-deductible contributions go toward this effort.

As I’ve mentioned before, the research at Dana Farber is revolutionary. There are a handful of institutions around the world (most of them private and supported by fundraising initiatives such as this one) that pioneer most of the cancer knowledge base and treatment protocols used in the world today. Dana Farber is one of these leaders, and their research and treatment methods set the gold-standard of practice used in clinics and hospitals around the globe.

Their teams and their knowledge sustained our daughter and sister Jessie for six years while she lived with leukemia (the best-of-the-best kind of leukemia, if you have to get it, as we were once told). Statistically, Jessie had all the best chances to go through the traditional, effective 2-year protocol and come out a survivor. These days, about 87% of all children treated for this type of leukemia will be long-term survivors. (Even 30 years ago, that number was much lower, so Dana Farber has made tremendous improvements in survival rates.)

Yet almost from the start, Jessie was one of the kids on the rare side of the experience; she was constantly beset with infectious challenges. She almost died on day 10 after diagnosis, over a span of eight hours, as her body shut down, not from cancer alone, but from the infection that had set in. Her oncology team saved her then, by identifying the bacterial cause and treating her aggressively with the best pairing of antibiotics to stop its progression. She endured numerous complications from that interlude, had parts of her body surgically removed and altered as a result, but she lived. There were many more bouts of infections, not all of them so dangerous.

When she relapsed the first time, and we couldn’t identify a close genetic match for a donor for a bone marrow transplant (another statistical surprise for all of us), Dana Farber used an alternative protocol, much more aggressive, that lasted another two years. After she relapsed a second time, Dana Farber recommended another option for transplant; we used stem cells donated anonymously by parents from their newborn’s umbilical cord. The transplant itself was successful; Jessie’s body populated with the new healthy cells of her donor … her blood type and cellular footprint changed. Sadly, aggressive infectious complications combined with a much-compromised immune system ultimately challenged her body too much, and she died 101 days after transplant. Six years after being diagnosed with leukemia.

Age nine.

These bare paragraphs don’t begin to articulate the depth of our family’s journey. They’re just an outline of an illness, and don’t tell you about  Jessie herself. All her passions: theater, swimming, dance, karate, bike-riding, dog-care, kindergarten-first-second-and-third grade, books, card games, soccer, drawing, conversations, friends, and family. She practiced how to ride a two-wheeler, but still used training wheels. She earned an orange belt in karate. She began to read on her own just weeks before she died. She had a crush on a boy in her grade. She dressed in black biker boots and red sparkly Oz shoes. She wore flowing princess gowns, bald or not. She went on father-daughter dates with dad. With her sister Sarah, she ran the Rotary 5K Kids Course. She put up mom’s hair in crazy do’s. She earned a soccer team medal. For one birthday, she raised money and supplies for the local animal shelter. In school, she led an act of social justice in the cafeteria to prevent ostracizing of another child. She performed in a community theatrical production while on treatment. She also traveled to England while on treatment. She savored Zumi’s chai tea, black olives, sushi, spaghetti with “sprinkle cheese” and sauce on the side, chicken and lo mein noodles, pancakes with syrup, and mint-chocolate chip ice cream. She went to the top of a ski slope, rode on skimobiles and jetskis (go fast). She also had temper tantrums, threw things, swore, yelled, drew in permanent marker on furniture, hid with the dog when we looked for her, liked to win even if it required inventing new rules for the game, preferred to be the boss in most situations, preferred the limelight and the liberty of choreographing her own dances or writing her own songs, without practicing enough to know the basic steps or musical chords, teased her sister relentlessly, and sometimes “hated us.”

Let me be clear. She was a little girl, compromised by a mortal illness, but living life as boldly as possible, despite that challenge. She wasn’t a saint, an angel or a martyr. She was “just Jessie,” but that means a whole lot, if you knew her.

Most of what Jessie accomplished, she did while on treatment. Two-thirds of her life was lived on treatment. Her lifespan was meaningful and vibrant, in great part because Dana Farber’s teams found ways to keep the cancer in abeyance and also to balance out quality of life with effective treatment. Nothing stopped her. And she changed hundreds, possibly thousands, of lives, simply by “living large” despite leukemia.

Anything I say cannot fully describe our family over those years. We have changed markedly from the family who first started this journey almost eleven years ago.

Sarah grew up from a naive second-grader into a middle-schooler who’d seen almost every difficult side of human existence, even before lost her sister. She stopped being the little girl who imagined she was a horse or a puppy and grew into a soccer player, on-again/off-again theatrical participant, saxophonist, committed dancer (modern, jazz/hip-hop, ballet), Honors student and gifted singer (solo and chorus). She helped to shape our family’s foundation, Bright Happy Power, and its work at Childrens Hospital with young cancer patients. She volunteered for InterAct (high school Rotary service club) and loved the mission trips with First Church’s youth group; that’s how she connected hands-on with spirituality. She is determined to help teens in abusive dating relationships or living with other traumas. And about becoming a pediatric oncology nurse. Her life grew more, not less, complex after living through Jessie’s cancer experience.

Chris? Became a partner in his architecture firm during the years of Jessie’s original diagnosis. During the most demanding parts of Jessie’s treatment, he was Sarah’s primary caregiver (took her to school every day, and was home every night to give her dinner, do homework and  put her to bed), yet also managed to visit the hospital a few hours every day or so, and take the weekend hospital shifts, while working fulltime. He joined and remains active in the Rotary Club, a service organization that works locally, nationally and internationally on health and education issues. He’s also become an avid cyclist and serves as a youth group leader and Deacon in our church. The only thing more important than these causes? His family: we have always come first. He will set aside any other commitment to be available when he is needed; that has never changed.

These sketches make both of my daughters (and my spouse) sound all glowing and goody-two-shoes, and anyone who has known them, realizes they are each real people and far from perfect. I have certainly journaled and complained (sometimes in very gentle, politically-correct terms) about the less-than-picturesque moments inside our family. Like all of us, my family members (living and departed) are each complex, imperfect and vitally intricate in character: gifted, troubled, challenged, determined, intelligent, cranky, beautiful (okay, handsome for Chris), moody, selfish, generous, always changing and growing.

My narrations cannot really depict the many Dana Farber and Childrens Hospital care providers who made Jessie’s life so rich, because she spent so much in their care. Many of them remain close friends and are still part of our lives. We had primary teams that followed Jessie for six years. Many people  knew her from her frequent visits to their stations or services in the hospital or clinic. And some people we met just a few times, or never saw at all, although they helped us. Nurses, doctors, surgeons, oncologists, geneticists, transplant specialists, pain management specialists, infectious disease specialists, GI specialists, lung and cardiac specialists, nutrition specialists, eye doctors, dentists, clinical assistants, nursing assistants, technicians, respiratory therapists, radiologists, radiology oncologists, lab technicians, pharmacists, anesthesiologists, therapists, counselors, playroom specialists, resource room specialists, medical clown units, music therapists, art therapists, volunteers, and even a visiting dog! Can you imagine how many people were involved in her life and her care?!

Sarah and Jessie in 2007.

Surely you can understand why my husband Chris and daughter Sarah will ride this weekend. We didn’t have a happy ending, but we had a special, memorable life together. Cancer didn’t define us, though it certainly shaped much of our life as a family.

We want even more for other children, other families. We want happy endings for everyone. Actually, we’d like empty oncology units and transplant rooms and eventually we’d like to put those units of the hospital out of business, because everyone is cured, and cancer is an archaic fact.

Although Dana Farber and other research organizations have improved the odds for many children and adults, we’re not done yet. Not even close. All of us know, or will know, someone affected by cancer. It might be in our own bodies, or diagnosed within our immediate family or a close friend or colleague. It will touch your life, if it hasn’t already.

Our goal, for now, is to work toward happier endings. To tell anecdotes with more satisfying results and even greater chances of long-term remission and healthy lifespans. We have come a long way. 50 years ago, leukemia was a death sentence for virtually all children. Now their chances are amazing. The same is true for many other pediatric diagnoses, though not all forms of cancer have such good outcomes.

Regardless of how optimistic the statistics may be, it’s all or nothing when it’s a single life. Sure, the chances of survival are about over 80%. But you can’t be 85% cured. In the end, you have it or your don’t. You stay in remission, or you don’t. It’s 0% or 100%. We want 100% for everyone.

Eventually, you will be able to be vaccinated to prevent some forms of cancer. Or there will be a genetically-tailored response to your specific cancer, that will target only the bad cells and not harm the remainder of your body on a cellular level, as it arrests and eliminates the cancer. It’s begun already.

For more facts and figures, I offer you these resources:

Our town’s local weekly newspaper, the Ipswich Chronicle, interviewed our PMC participants. Movingly, they asked the question, “In one word, what emotion best captures your experience in the Pan Mass Challenge?”

The answers in our town were these:

  • Chris Doktor: Gratitude. I continue to be grateful for that I can ride in memory of my 9-year-old daughter Jessie and do so with my surviving daughter Sarah. I’m grateful that I can share this experience with her for the fourth year. I am also grateful Dana Farber kept Jessie aliveby keeping her cancer in check for six years. I am grateful research continues to expore answers to this dilemma we call cancer.
  • Bill Gram: Faith.
  • Bob Caruso: Inspiring.
  • Sarah Doktor: Challenging.
  • Diana Lannon: It’s difficult to distill down to one word what emotion best captures my experience in the Pan Mass Challenge. I actually tjought about I on my ride today. I would say the words are gratitude and love.
  • Paul Slack: Sorry but I have three – love, sadness and hope.
  • Logan: Transformational.

Here’s a link to learn more about or support Chris  and Sarah  or Ipswich riders.

Me? I’ll be there at water stops and the finish line with camera, extra water, emergency gear, and cow bells. Clang-clang! Someone has to be the crowd along the sidelines for this event. When Chris was asked by the Ipswich Chronicle reporter about his favorite part of the ride? He answered, “Seeing all the people along the route – waving, offering water, holding signs of thanks and encouragement, reaching out to touch a hand … as well as arriving at the first water stop — all the excitement and enthusiasm of the volunteers is inspiring!”

Jul27

A Time for Every Matter Under Heaven

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On a grey and misty day, when the sky is overcast, and I have heard sorrowful news from many places, about the return of cancer in a grown man’s body as well as a little child’s belly, why do I feel like crying?

Today, it seems as if even the sky weeps. It comes down, not salty or briny, but as fresh water, pattering gently, renewing the earth.

Don’t you sometimes feel as if the world recognizes your emotions? On a bright windy day, in kite-soaring weather, you might think the earth’s spirits are as feisty as your own wheeling, enthusiastic thoughts. Then at a solemn time like this, it seems as if the earth mourns along with families who are in pain. On occasion, our world echoes back, gently, tenderly, but on a greater scale, our human-sized grief.

After all, this fall of rain is the letting go of pent-up pressure. It is the release of something that was carried great distances, transformed and contained, until it grew too heavy to bear any longer.

Oh, rain. Fall. Fall. Weep, when I can’t. When I don’t have a particular reason to do so, except that I empathize with the news that comes today.

Mind you, no one asked me to worry about a distant family’s  pain or grief. But I do. I care. It happens, I suppose, because humans are wired to have emotional connection with each other.

So today’s journal is a meditation on the news I heard from other cancer families, as well as what I have witnessed as a companion of friends in hospice and reflections from inside our own family’s journey through twice-relapsed leukemia, transplant and its aftermath.

Right now there’s an ache that seems as big as the sky’s sorrow, to know there’s pain inside these families. A different sort of pain than first learning about a dangerous diagnosis. A pain more final than wrapping your head around the threat of disease, then lifting a chin and taking a deep breath, planting your feet and looking fate in the eye, and saying, “We can get through this. There are answers. There is something to be done. We have hope.”

It’s an altogether different reality, when the experts tell you, “There’s nothing more we can do.” And that’s the news that different families received recently.

For the family who hears these words, there comes a new squaring-off with time, fate and faith. When you hear such irretrievable pronouncements, you may …

  • Want to stay right where you are, put your hands over your ears; pretend you didn’t hear, you don’t know, you cannot see. Hope that if you just wait in one place a while longer, ignore it, deny it, then this bad news won’t be happening.
  • Then argue, and say you’re going to find an answer, even if you have to go somewhere else, ask someone else, do something more experimental and unconventional, because this cannot possibly be all there is.
  • Pray. Beg. Barter. Beseech the Creator for a miracle. Or peace. Whatever is possible.
  • Eventually hold on tighter to each other, try to fill silence with everything that needs to be said, begin to check off the best and brightest experiences on your loved one’s wish list, because the calendar isn’t on your side anymore.

For a while, perhaps you think it can’t be happening. It’s not possible.

Then at some point, there’s another transition. A realization. It’s happening. Oh, Lord, this is real.

Relapse? Recurrence beyond known forms of treatment, or beyond any useful medical response at all? It’s not fair. It’s not just. It’s not logical. It’s not … it’s not anything you can easily reconcile or understand. Not at any age, but especially not a father and husband who should justifiably expect decades ahead of him, or a little child who may never attend kindergarten.

But it happens, all the same. For many families, the result of treatment after diagnosis is ultimately hope, survival, and recovery. For others, there is this other other outcome.

I feel … just a little … like I understand families who must keep vigil, make the most of their living time together and perhaps … probably … although we always hold out hope for miracles … find ways to say good-bye. Please know that I recognize that every individual and family’s journey is different. And the outcome isn’t pre-ordained, though science may say it’s predictable.

Because I can tell you more than one story … from our own years on treatment with Jessie … about children who survived, inexplicably, with amazing outcomes, after every scan and test and medical opinion said it wasn’t likely, or even possible. So it’s okay to keep holding out, at least in some quiet part of you, or maybe in the biggest, loudest part of you, for the miracle.

Meanwhile, it may be healthy to immerse yourself in this place where you are. This time … of being together in the face of farewell.

Such experiences can be profound. Meaningful. A blessing in their own way, though very difficult and wrenching. (Or something else entirely.) It depends, largely, on the family’s response, and the support of their caregivers and community.

As a family continues on this journey, they do so in the way that seems best to them. Together they think about … and feel their way toward  …  how to be together in the time that is given to them.

No one, bearing witness from the outside, can say what is right for someone else. We cannot step into the path, and avert a difficult journey. Change what will happen. Only the family, the patient and their loved ones, sometimes with guidance, can choose their direction, do their best with what resources they have, and go wherever this path leads them.

Meanwhile, their medical caregivers? The ones who say there isn’t anything left to do? Likely they have tried everything. And despite this insight, some specialists continue to try to prolong life. Caught up in such extreme measures and momentum, medical caregivers … and sometimes guardians and patients themselves … may seek intervention. (Which could be a viable choice, but might also be more damaging. Such decisions are best approached with much consideration, since you can’t be sure of the results, or the cost to the patient’s wellbeing.)

In the optimal scenario, part of a family’s caregiving team is thinking about different values and assessing the whole situation from an alternate perspective. This person may take the opportunity to pause events. Often we need a trusted individual, hopefully a professional who is trained and ready to handle this form of advocacy, to take on that role. Perhaps this is someone neutral, from outside the family: a trusted mentor, counselor or medical practitioner. Who can credibly say, “Wait. There are other consideration here. Comfort. Dignity. Your belief system. Let’s balance the invasiveness of more treatment, more heroic measures, with measures that will preserve quality of time.”

The healing a family may seek, at such times, is not always recovery from the diagnosis. Not anymore. Instead you wish for a dignified and peaceful letting go, that involves family and friends, and makes the most of the time that remains.

Yet even the experience of being together, and letting go, can offer a form of healing. Solace. Peace.

In the case of families treated for cancer at Childrens Hospital Boston and Dana Farber, this journey is often guided by PACT, its Palliative Care Team. For many others, it also includes hospice professionals. When such a practice is integrated into the process, it provides immeasurable resources and comfort for families.

After all, in the face of such relapses, your concept of time changes. Your focus shifts. With additional support, the energy of the family can be aimed at the most important issues: emotional and psychological interactions with each other. Other bodily concerns can be managed by a team of people who are experienced in this area. Sensitive changes in moods, emotional state or mental outlook may also be tended to, by caregivers knowledgeable about what’s happening inside the patient and family’s hearts and minds.

Just for today? So soon after families have first heard and shared this news, and their friends are just trying to let it sink in? Perhaps they aren’t yet ready for all of those concerns and negotiations, those steps and decisions.

Sometimes, it’s too soon to cry. So you let the sky weep for you. Until your own tears come.

Finally, there’s this other truth. Believe it or not, the weather will change. The sun will flicker into view, grow hot and bright again. And even in this part of a family’s journey together, when people are probably starting to understand that they may say good-bye to each other, a person may want to stand in the light, turn her face to the sky, and laugh as loudly as possible. Cast a long purple shadow across the earth. He may wish to listen as the world echoes back his presence, while he has breath to move and shape the air, to fill the wind with the sound of a human voice, human joy.

This isn’t new wisdom, although I have learned it firsthand, over time, too. It is written in many sacred texts.

Ecclesiastes 3: 1-8

3 For everything there is a season, and a time for every matter under heaven:

2 a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
3 a time to kill, and a time to heal;
a time to break down, and a time to build up;
4 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
5 a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6 a time to seek, and a time to lose;
a time to keep, and a time to cast away;
7 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
8 a time to love, and a time to hate;
a time for war, and a time for peace.

There is a time and a season for  grief and hope, sorrow and joy, anger and serenity. One follows the other. They are all integrated. Parts of the same mortal experience. And the same sacred journey. Over and over. Again and again.

Just now,  it feels comforting that the sky seems to weep for the families whose pain we cannot ease. And later on, that the same universe will grow bright and laugh with us, because that time will come, too.