Endless Knots

For the "Mondays at 4" group

 

 

It's impossible to know the right thing to do after someone close dies. We try all kinds of things. Walking. Talking. Weeping. And then there's something unexpected.

Dana-Farber Cancer Institute in Boston offers grief support groups for families of patients who've died. My husband was only treated briefly at Dana-Farber. Treated is even too strong a word. Two months before he died, he entered a small clinical trial in which an old anti-malarial, hydroxycholoroquine, was being used to stem pancreatic cancer. A very long-shot. Very. And by the time he started the trial, eight weeks before he died, he was already very ill. But, being Jeff Stamps, he thought it might be helpful for someone else ...

He made it through two rounds of the drug before he was too sick to continue. So our entire tenure at Dana-Farber was only one month long (as compared with the 13 months of excellent treatment he got a the hospital across the way, Beth Israel Deaconess).

A month or so after Jeff died, I got a very nice letter, a helpful booklet, and an invitation in the mail. Dana-Farber was holding a grief support session for people who'd recently lost family members. I went and there found about a dozen others, most of whom, like me, had lost their mates. The social worker asked if any of us would be interested in joining a regular group, which I did about a month later.

That group, led by Sue Morris, Director of Bereavement Services at Dana-Farber and author of Overcoming Grief, just concluded after six sessions. There were nine of us in all, six women, three men, most long hetero marriages, one gay couple, all of us not wanting to be there at all but all of us returning week after week. I raced up from weekends in New York on at least three of the weeks, raced because I couldn't miss it.

What we knew together was what no one wants to really understand because you can't until you're in it. And there's no way to hurry out of it. We cried together, looked at the pictures of the mates who'd died, nodded until our necks hurt when someone said something that was barely a fragment of a sentence because the rest of us knew where that string of words was headed.

I was surprised that Dana-Farber, where I barely recognized a soul, offered these sessions and that Beth Israel, where I knew and had become friends with many people, did not. Daughter #1 made an interesting observation: the death rate at Dana-Farber, being a cancer hospital, was likely a helluva lot higher than at the academic medical center across the street. I recently came across a statistic that only 56% of people with cancer survive. It's a crazy stat since 100% of us will die -- and what does 56% survival mean anyway? But the point remains -- I'm pretty certain that more patients die at a cancer center than do at a regular old hospital.

A few weeks ago, one among us, Sue Robertson, above, a classical pianist and a writer, said that she hadn't been able to play since her husband had died. I understood. I haven't been able to write since mine died (I know, I know, this is writing but not the kind of writing I want to be doing - and I know I'll get there). And in that session, she decided to see if she could play at the hospital. Which she did. Three times now the custodians at Dana-Farber have rolled out their grand piano, including this past Monday, when Sue played before our last session. Most of us were there to listen. Many of us (ahem) cried.

Beautiful... and thank you, Sue, Barbara, Mary Ann, Dagmar, Doug, Margaret, Jim, James, and our counsellor, Sue. Well done, Dana-Farber. I'm really grateful to "you" for the weeks of support...

They even comped our parking tickets.

 

 

 

The way to do it: "I waited to write"

A little over a year ago, I received an unexpected package in the mail from someone I barely knew. Amy Reece had heard about our situation and her impulse was to send a gift, a warm and snugly gift, a creamy blue pashmina which I wore today. Since then, there have been many gifts of kindness from people we know well, some whom we barely know, and some whom we hadn't heard from in years. One such came through last week, a letter from Alexandar Randall V, whom we first met in the 1970s and whom we haven't seen since the late 1990s. With his permission, I'm excerpting the letter, omitting all the truly personal material, including many observations Alex has about Jeff and about Jeff's and my life together. I'm posting the letter for a simple reason. It's an example of what helps after someone dies, in this case a little more than four months after my spouse has died.

Thank you, Alex. (NB: Alex is often credited with having conducted the first act of ecommerce through the Boston Computer Exchange, the very early bulletin board system that he started with his wife, Cameron--"Camie," see below--Hall, who died in 1998.)

Dear Jessica:

I waited to write. When my wife Camie died, it seemed that everyone had words of condolences and joined my grief for the few days immediately after her passing. Yet I was still mourning weeks later and by then I was all alone. So I waited to write when the throng has finished sharing your grief – so I could be here for you when you are more alone...

...I observed when Camie died that there was no one left who shared our mutual stories. There was no one with whom I could say “remember that day in Spain at the Sherry festival” and have her nod and remind me of the rhythm of the drummer in the dances. Or “Remember when we were still doing the business in the living room…” and have her remember the buy and sell cards.

Because we were together 24 hours a day at work and at home, our whole history was a shared history. My deepest loss as the loss of the mutual memory, the shared stories. There is no one else who shared it all and with her, I felt as if my memories had been removed. I lost my stories when I lost her. I can remember but there is no one with whom to share the memories. I assume you are experiencing just such a loss now....

Someone came to me after Camie died and said “She has given you a new life. You may not have asked for it but you have the gift of a new life.”

Jeff has given you a new life. You may not have asked for it, but you got it! You will have new adventures, new projects, new working partners and more. It may not have been your life plan, but it is now.

I send you deepest condolences on the loss of Jeff and I wish you all the best as you explore the new life upon which you have embarked.

If you need a vacation sometime, please make plans to come to our guest cottage and perhaps we can roll you into a special presentation at the University of the Virgin Islands.

May he rest in peace and may you thrive in your new endeavors. Godspeed!

Alexander Randall 5th
/sig/

She helped

Given our predicament, we've been on the receiving end of a great deal of kindness and generosity over the past four months. At the beginning, the kitchen counters were piled high with brownies and chocolate cakes and pies and shortbread. A favorite couple friend sent one of those elaborate fruit arrangements; another brought baked chicken; another ravioli. There was so much food that we had to buy another refrigerator, which served the dual purpose of allowing us to have enough food to serve all the people dropping by and to put out that which they'd brought.

That time has passed for the moment. As a social worker said near the beginning, a crisis only lasts for so long. "Figure four to six weeks," she predicted, and she was right. You can only tolerate that high-pitch of living for so long and then things have to return to some regularity, albeit one that doesn't feel regular with all the medical appointments, trips to the pharmacy, and suchnot.

But then out of the blue (wonder why that expression isn't "out of the black"), long after the initial crazy period has died down, something else happens.

One morning a package arrived with Amy Reece's return address. "You seem to have a book from Amy," Jeff said, handing it to me. It didn't feel like a book because it was soft (in retrospect, I guess it could have been one of those fabric books for the twins, but that didn't occur to me).

Inside something wrapped in turquoise tissue paper and tied with a lime green ribbon, along with a card in the same colors with a lovely personal note. The gift? A silky soft pale green pashmina. I love pashminas, wear them as often as I can, and, as with all women who have them, wish I had one in every color. I didn't have this color and it goes beautifully with a number of pieces I have.

I don't know how Amy knew how much I love pashminas. We've never discussed them. In fact, we've never even met face-to-face. We worked on a project together for Cisco last year, spoke a few times on the phone, clearly liked each other but I never would have expected her to know what was going on with us -- and certainly never expected a gift like this. Somehow she found out and decided to respond this way.

Here's a bit of the note I wrote Amy later that day. It says everything I'm working up to saying here:

We've received many notes, dear Amy, from people we know well and from those whom we hardly know, many of which end with "please let me know what I can do." The words that always come to mind are "find a cure for pancreatic cancer" or, in my more cynical moments, "You want me to not only deal with this but also figure out how to make you feel better about it???" I'm ashamed of those feelings, of course, but they're really there.

Every now and then - and only from our closest friends - something completely unexpected appears that sands off all that meanness in me, takes away a few moments of the pain, and makes the whole experience not worth it exactly but elevated to a level of connectedness that I've rarely experienced.

Such is your gift of kindness, my dear.

Thank you so very much, Sweet Amy. May I blog about this? I want the whole world to know who you are.

So now I'm blogging about it (she didn't object). Again, here's Amy's site. You now know how kind she is and by clicking you'll see how talented.

 

 

Does anyone have $11.25?

It was a scene at New York's Penn Station last Saturday. All the trains were late because of the blizzard to the south. No one was smiling and a lot of people were just standing by the big board with the word "DELAYED" next to most trains' departure times.

An hour late, the Northeast Regional to Boston boarded. People were just taking their seats when a young black man, maybe 25 at most, walked into our car. "Please," he said in a somewhat desperate voice. "Can someone give me $11.25? I've missed three trains already because I'm short. I have to get home. I'm not a bum. Can you please give me $11.25?"

I couldn't quite understand the circumstances but as I fumbled to pull out some money, the man, white, taking the seat across the aisle had already reached into his pocket and given the younger man a $20. "God bless. Thank you," he said and he was off the train.

I wondered about the man across from me for the rest of the ride. He didn't polish his fingernails on his chest as if he'd done something important. He didn't even discuss it with the woman he was traveling with. They just settled in, talking, her working, him reading, a lovely couple perhaps in their early fifties.

Shop at home, change a life

My college roommate, Sylvia, a font of wisdom, has a great saying for her kids: "If you need something, shop at home first." Well, even for those who hate shopping -- or who need something more than Bandaids, we are all bound to do some in the weeks to come.

Here's a way to do it with a kick - an auction (they're running once a month, this one from today through Dec 7) to benefit the Sidney Borum Jr. Health Center (see below for details).

Bling! Brownies! Brady! Babble! (er, the chance to have me speak to your organization)

All good and here's what you're helping:

Located at 130 Boylston St, across from the Boston Common, the Sidney Borum Jr. Health Center opened in 1994 to serve the health care needs of homeless youth and young adults, many of whom engage in unsafe sex with adults in exchange for money, food or a place to sleep. 

The Borum provides primary medical care as well as mental health and substance abuse counseling, HIV counseling, testing and risk reduction reinforcement, as well as other clinical and social services.  Its primary focus is on young people who have been unable to gain acceptance in more traditional health care settings for a variety of reasons, including homelessness and involvement in street life and the sex industry. 

The Borum provides care to HIV positive adolescents and young adults and those who are gay, lesbian, bisexual, or transgender and, therefore, at risk of not receiving culturally and clinically appropriate services. 

Do I hear $50? $100? $500?

Clever idea. BiddingForGood, which holds auctions for non-profits, is hosting one for Grateful Nation, the online volunteer site associated with Beth Israel Deaconess Medical Center. BIDMC CEO Paul Levy kicked the auction off this morning on his blog. Purpose of this auction is to raise funds to buy an ultrasound machine for Bowdoin Street Health Center in Boston's Dorchester neighborhood. Placing an ultrasound machine in the health center will allow pregnant women to have their sonograms near where they live, rather than having to travel, often by public transportation, to the hospital itself, which can be a time-consuming journey. Very good cause that I support wholeheartedly, based on recent experiences close to home.

The auction runs for a week and includes about three dozen items ranging from a baseball signed by Luis Tiant (its value is marked "priceless") to a $100 gift card to Mantra Restaurant to an "Inspiring Speech for Your Organization by Monique Doyle Spencer" to, of course, an "Interactive Presentation" by yours truly.

Bid fast! The whole thing's over in a week but if you miss this one, plan ahead for the holidays, as there will be one the first week of each month. And naturally you too can donate an item, a service, a who-knows-what. I've turned my thinker-upper on to figure out what's next from us.

Facebook and the !Kung

Well, not exactly, but this interview ("Where Gifts and Stories Are Crucial to Survival") with Pauline Wiessner, an anthropologist at the University of Utah, is not to be missed. She talks about how the !Kung (click your tongue to say it or listen to Miriam Makeba sing "The Click Song") maintain social connections across distance and time--and how here in the non-!Kung world we imitate them via social conveniences like Facebook.

First point is that distance is no impediment to intimacy if we are willing to keep those we care about close in our hearts through gifts. Reinforces the truth that many of the most generous people are those with ostensibly the least to give.

Second point is the story-telling. By talking about those who are "away," the !Kung keep them in the conversation. Facebook, Wiessner says, is a contemporary example of how we keep those not in view front and center in a different way.

"People who use it [Facebook] say it keeps memories of distant friends alive and it sometimes brings long-lost relationships back home. We all know of people who’ve been 'friended' by old pals from college and former neighbors they’ve lost touch with. When they see pictures of them and read 'sharings' from their Facebook partners, they are reminded of their presence in their lives."

Here are the opening few paragraphs of Claudia Dreifus's enlightening interview with Wiessner. You have to read it. Make sure you go to the end too where one of the !Kung snags a satellite phone and calls Wiessner in Utah, asking her to buy some soccer shoes for their team, which an American documentary filmmaker had promised to send a few years earlier but never had.

Q. ONE OF THE GROUPS YOU STUDY, THE !KUNG PEOPLE OF SOUTHERN AFRICA’S KALAHARI DESERT, ARE NATIVE TO ONE OF THE MOST UNFORGIVING CORNERS OF THE PLANET. HOW DO THEY SURVIVE IN A PLACE OF FREQUENT DROUGHTS, FLOODS AND FAMINE?

A. They have an intricate system of banking their social relationships and calling on them when times get rough. The system is maintained through gift-giving, storytelling and visiting. It works like insurance does in our culture.

I first arrived in the Kalahari in the early 1970s, when the !Kung were still primarily hunter-gatherers. My question then was: how do people without meat on the hoof, grain in the larder and money in the bank survive hard times?

When I was there for about a year, some answers came. There was a heavy rain. The desert plants died and the wild game dispersed. As people grew hungrier, they began telling vivid stories about loved ones who lived as far as 200 kilometers away. They spoke about how they much missed them. Soon people were busily crafting beautiful objects — gifts. Finally, when push came to shove, 150 !Kung began trekking to the encampments of the people they’d been remembering. There they stayed until conditions in their home area improved.

What I’d witnessed was a structured system at play. The Bushmen used the storytelling to keep feelings for distant persons alive. The gifts are their way of telling the receiver, “I’ve held you in my heart.” Over the years, I saw this repeated many, many times. It would turn out that the !Kung spent as much as three months a year visiting “exchange partners,” and this was the key to their survival.

Another one of those random acts

Told to me by a good friend who's struggling:

She went to the dentist for a filling that she'd been putting off because, of course, the price tag on such things is about the same as a couple of good tires. While there, the dentist said, "Gee, you're way overdue for your X-rays," which the woman knew because of the, you know, same aforementioned problem. "I mean you're, like, two years overdue." Sorry, said my friend, no way can I afford that.

Drill, drill, drill, slurp, slurp, and then she heard the dentist whisper to the technician. "Take her X-rays but don't put it on her bill." And thus another person bent the rules to help out someone in need. Very very nice.