Monthly Archives: April 2013

No good way to grieve

When Sarah was turning forty, I wanted to give her something special. I found exactly what I was looking for:  seven delicate bracelets carved from bone. I sent three to Sarah, but reserved four to wear myself.

Splitting up a gift may sound odd, but it was not without reason. The white circle holds magic for me; a symbol of protection. And seven was our sum:  Sarah had been number three in the crizotinib trial, and I number four. The bracelets were meant to be souvenirs of travel to strange places; amulets of protection and a testament to our common bond.

Several days ago I received an email from Sarah’s husband. It’s been a difficult time for all of them, Michael and the children. He told me that he was wearing Sarah’s bracelet.

There is simply no way to predict the when or why or even how of grieving. Because life must go on, we do as well. Until those moments when an unbearable sadness washes over us and we find ourselves gasping for breath.

I closed my laptop, drew a hot bath, and had a good cry. And then I put on pajamas and got my copy of Sarah’s book of poetry, Tigers at Awhitu. She had written this inscription on the title page:

Tigers at Awhitu003David and Peter got home when I was half way through the book, my face blotchy and tear stained. David brought me some tea, and I read every last poem once again.

Tigers at Awhitu---Auckland University Press

Tigers at Awhitu—Auckland University Press

I know—I understand, that life is not anything close to fair—and yet Sarah’s passing is such an injustice. Nobody should die from lung cancer at the age of forty. I am grateful that we have her poems to hang on to. In July, a second volume titled Gleam will be published; something that Sarah was really looking forward to.

The particular beauty of poetry may well lie in it’s very spareness and ambiguity. The form lends itself to interpretation, and invites the reader in. We connect the dots and complete the suggested narrative, making the meaning very much our own. I am certain I know what Sarah was talking about in her poem Keep moving. For me, it is confirmation that she is still traveling.

Keep moving

I lumber over the land, knees swollen
and knotted like giant kumara roots.
Who is that child so far down below
who reaches out to me? I can barely hear
his cry, he is simply too far away. I trudge
through drying braided rivers, I step
over tussocky brown hills. What do you say,
you small people waving your hands at me
from beside the lake? You think I should stop,
you want to help, the child needs me?
Huh. No, no, the heat is its own desperate cure,
the creaking legs need to keep moving,
the dry earth knows all about me. The child?
Oh yes, I can see him still, I think he’s
getting smaller — isn’t that strange? Maybe
he’ll disappear — meanwhile, I have my eye
on that razor pass through the mountains.
I think I may have been there before.
— —-
Sarah Broom–Tigers at Awhitu

The world loses a very bright light: Sarah Broom

Sarah Broom:  photo by Shane Wenzlick (phototek)

Sarah Broom: photo by Shane Wenzlick (phototek)

Last Thursday I was up before the robins, in order to get Peter ready for a 5:30 a.m. departure for Washington DC with his classmates. After rousing our sleepy boy, I quickly scanned through my inbox. There was a message from my friend Sarah Broom, with the subject In memorium. I hoped to hell it was the title of a new poem but my heart was heavy as I opened the email. It had been sent by Sarah’s husband, Michael. Sarah had died.

As I hurried Peter out the door, I kept the news to myself. Already reeling from the Boston Marathon Patriot Day bombings, I felt an intense need to protect Peter from additional sadness and worry as he went off on what was intended to be a holiday.

After returning home, I crawled back into bed and fell right to sleep. When I awakened several hours later, I immediately recalled a dream:  I’d been sitting on the floor of a closet that was not mine. Most of the clothing was gone, but there were some beautiful objects on the shelves, shrine-like in presentation and fashioned from polished brass and ivory colored lace or coral. The door to the closet opened, and a stranger asked me what I was doing there. I gestured to the space around me and said, “I am so lonely, and this reminds me of the forts we built as children.”

For the past few months, I had spent many a night imagining Sarah, Thao and myself running, climbing, jumping, flying. Young and strong again, with scabbed knees and cheeks flushed with pleasure. Invincible.

My special relationship with Sarah began almost five years ago. When I took my initial dose of crizotinib in 2008, I was the fourth person in the world with NSCLC and an ALK mutation to do so. Sarah, who lived in New Zealand, had directly preceded me on trial as number three. Through social media and a common acquaintance (number two in the trial, our friend Kevin), we began a dialogue.

Initially, our communication was infrequent. With time, emails segued into long telephone conversations. A little over a year and a half ago, Sarah came to Boston for treatment, and we were able to spend some actual time together. Although she soon returned home to New Zealand, our sessions over the phone continued with renewed intensity.

Sarah was brilliant; a poet with a doctorate in English from Oxford in addition to a master of arts in English from Leeds University. Hers had been a tough road: Only thirty five years old and pregnant with her third child when diagnosed with lung cancer, Sarah advocated fiercely for the sort of care not readily available in New Zealand. For more than five years she endured the side effects of multiple treatments and a hopelessly aggressive cancer, always with unfailing optimism, courage and devotion to her family.

In our lengthy chats we talked of the things most friends do:  love, life, relationships. Books, creativity, our hopes and dreams. But we also discussed our illness and, of course, dying. In a way that was extraordinarily open and free from pretense.

I loved Sarah and felt intensely connected to her. I knew she was dying. In fact, the afternoon before I opened the email from Michael, I felt a certain shift in the universe and was certain that it had to do with Sarah.

I am devastated. However, my loss pales next to that of her family. Also, I know that Sarah had made peace with what was coming and that she is now free from suffering. She will live on in our hearts and in her own words, and although the earth may now be a bit dimmer, the sky is brighter still.

And when I walked out last night

it was cool, the coldest night this winter,
and when the stars asked me to join them
in the ache of their bareness, I let them
take me, and they carried me between them,
clusters of stars all along my body, and I arched right back and pointed my toes and fingertips,
and was as long as ever you could imagine
and they did not let me go.

by Sarah Broom

 

Too close to home

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Monday, April 15th, our neighbors in Massachusetts celebrated Patriot’s Day and the running of The Boston Marathon, as they have every April since 1897, when the world’s oldest annual marathon had its inception.

Although children in Massachusetts have a holiday from school, that was not the case here in New Hampshire. It was a little after four when Peter got home, but the sun was shining and the air deliciously warm. I put down my rake and joined Pete on the bed of his dad’s pick-up truck. We chatted amiably as he tucked into a bag of doritos, and I noted what a positive difference the mild weather had made on my state of mind.

And then David came outside cradling the phone, with a concerned look on his face. When I asked him what was up, he explained that my stepfather had just called with the news that there had been more than one explosion at the finish line of the marathon, with at least two deaths and many injuries.

There is no need to go into the details here, as the media has been all over this story for the past week. Suffice it to say that it has been impossible to not feel the impact on so many levels. Sadness, anger, lack of comprehension. Anxiety, as Jemesii called me several times yesterday from her apartment in Cambridge, where all residents had been asked to stay inside behind locked doors as a manhunt was conducted for the second suspect. Relief when the young man had been found.

It’s been a tough week, and not just here. An explosion at a fertilizer plant outside of Waco, Texas leveled much of a community and took at least fifteen lives. A five year old girl in India was brutally raped. And these are just the stories that we know about.

Life can be incredibly painful. We wish it wasn’t so, as our human impulse is to eradicate suffering.

I think that is what I love so much about people; our capacity to care for each other. And events such as those in the past week only tend to underscore the fact that most people are really, truly good. Look at all the first responders after the initial explosions; ordinary people who rushed in to aid and comfort wounded strangers. Or the athletes, who after crossing the finish line, kept right on running to the nearest hospital to donate blood. And then there were all the ordinary people in Boston who opened up their homes to stranded travelers.

Yesterday, Governor Patrick Deval asked the citizens of Boston to just stay indoors. Schools and businesses were closed, public transportation was shut down, and sporting events were cancelled. A snow day, without the snow. It turned out to be a brilliant ploy, as officers were finally able to locate the needle in the haystack. It also highlighted the ability of individuals to cooperate, and to put their own needs temporarily aside for the greater good.

Lives, limbs and innocence were taken this week, and some of us will never be the same. However, in the face of tragedy it is important not to lose sight of one very important concept:  although we cannot always control what happens to us, we can control how we will respond. Evil will never overtake us, because we will not allow it to. Love will always trump hate.

On a path to greater learning and understanding

I was brought up in a family which placed a lot of emphasis on service, and while in high school, I volunteered regularly as a Candy Striper at the local hospital. I still remember at least one aspect of my training:  the particulars of how to make a bed military style. What really stayed with me was a strong belief that helping others is an essential aspect of good citizenship. Happily, many schools are recognizing this as well and now require students to devote a certain number of hours to community service prior to graduation.

In order to fulfill this requisite, Peter wanted to volunteer at a local animal shelter, where his time would have been spent cleaning cages. I felt there was potential for a more rewarding experience, and continued searching until I found a notice from an organization called New American Africans. They were looking for volunteers to teach ESL, or English as a Second Language. Peter and I both submitted applications (if I was going to provide the transportation, I figured I might as well participate) and we went to Concord for an interview with Honore Murenzi, the director of the program. And then we got started.

The students are primarily political refugees from Bhutan; ironically, I wrote a now seemingly naive post about Bhutan and Gross National Happiness  three years ago. At the time I was unaware that Bhutan is a place with a complicated history, and that not everyone has equal access to happiness, as demonstrated in this nuanced article by Kai Bird from  the March 26, 2012 issue of The Nation. The author addresses the forcible expulsion in the 1990’s “of an estimated 80,000 Bhutanese of Nepali ancestry.” Most of those expelled as a result of poorly disguised ethnic cleansing languished in Nepalese refugee camps for almost two decades. The United States (and a handful of other countries, including Canada) ultimately agreed to accept a significant number of refugees, and between March of 2008 and September of 2012, 60,000 Bhutanese resettled in the US.

It’s daunting to think of what these people have already faced and the challenges that still await them, starting with the difficulty of adapting to a foreign culture where you don’t speak the language. Those who come to ESL class range in age from perhaps twenty to sixty five. Many of them have never been schooled, and progress is slow. However, their tenacity is inspiring, and Peter and I have enjoyed getting to know these remarkable people.

Unfortunately, once I started chemotherapy, I was unable to maintain our weekly schedule. However, we hired a young woman, Abbey, to help out with transportation occasionally, and she has enabled Peter to honor his commitment. Now he sometimes leads a class of more than a dozen students by himself.

Last week I felt well enough to take Peter myself. After class one of the students approached me to ask if Peter and I could come to her house for dinner that night. This was not the first time she had made this invitation, and although Peter needed to get home to work on an assignment, it was clear that we needed to honor her request.

And this is why:  many months ago we had taken several families from our class to the grocery store—which meant walking a mile each way—something they do on a regular basis no matter the weather. Our intent was to show them how to use coupons. Ultimately, our effort was misguided, as the coupons were for significantly more expensive brands and therefore of little use. However, Peter and I helped identify cheaper products that were on special, and we loaded up a cart. As it turned out, there was some confusion at checkout regarding vouchers, and I ended up charging quite a few of the groceries to my credit card.

The next week, everyone shyly paid me back, but one woman was several dollars short. I told her not to worry about it, that she could have us over for dinner some time. The woman was the same one who had repeatedly asked us to come to her home for a meal, and although I had made the comment about having us over for dinner in an offhand way, that is not how it had been received. It was my turn to learn something.

And so our friend, named Phalguna, got in our car and we rode together to the apartment complex where many of the refugees are housed. When we arrived, her husband was resting on the couch, but he sat up and indicated that we should sit next to him. He spoke very little english, but we did our best to engage in small talk as Phalguna busied herself in the small kitchen. I was interested in the ancient sewing machine that sat next to the table, and with the help of his ‘third daughter’, Phalguna’s husband explained that he was a tailor. He rose to fetch some examples of the clothing that he made; saris and men’s button down shirts.

And then Phalguna set glasses of water and two L1020894steaming plates upon the table and invited Peter and I to sit down. “Namaste” she said, and as the three family members watched, Peter and I ate the dumplings stuffed with cabbage, onion, ginger and cilantro that Phalguna and her husband had made earlier in the day.

The dumplings were delicious. After we had eaten our fill, Phalguna placed a generous helping in a plastic container for us to take home and Peter and I said thank you and goodbye. The entire experience had been unexpected and just a little bit of awkward but a whole lot of wonderful. And, just as we have throughout our time with New American Africans, we felt as if we had gotten back far more than what we had given.

Future tense

Peter Duff tries to thwart a candid shot (fail)

Peter Duff tries to thwart a candid shot (fail)

On the second of April, Peter, David and I attended Experience Exeter, a daylong introduction to Phillips Exeter Academy for admitted students as well as their parents. To say we came away dazzled is an understatement.

Of course, there is something very bittersweet about the fact that Peter shall be going off to boarding school. Yes, it is the realization of both a dream and some very focused and labor intensive campaigning on the part of yours truly. I couldn’t be happier about the end result:  a new world is going to open up for Pete; one glittering with opportunity. In addition, he will become a member of a community that shall provide him with academic, social and emotional support.

However, from a purely selfish standpoint, this is going to require some adjustment. You see, Peter Duff is really great company. I adore this kid and love spending time with him. A couple of days ago, the two of us were out running errands. At one point I began to feel a little emotional and turned to Pete to say, “I’m really going to miss you.” He responded with, “I’m glad you’re going to miss me.” (versus the alternative!) However, what I heard was “I’m glad you’re coming with me.”  That is what you call wishful hearing.

For a peek into what the future holds for young Master Duff, check out the lovely video PEA sent along with the email announcing his acceptance:

(if you don’t see a video, you may have to download vimeo—my apologies!)