Goodbyes

Stephen's heart

I always knew that my high school friend Jane was a gem: kind, generous, loving, and passionate about food and Fred Astaire. 

So I wasn't really surprised when I heard that she and her husband, Eric, opened up their home in Cleveland, Ohio, to a friend-of-a-friend in town for medical reasons. And I wasn't even surprised when she told me that this man, a visitor from England named Stephen, not only stayed for a few dinners but lived on and off with Jane's family for two years while awaiting a transplant for a congenital heart condition.

I just hadn't realized the depth of that friendship until I heard that Stephen died this fall in England, without his new heart, and that Jane not only hopped on a plane to be with him at the end, but also contributed one of the eulogies for his funeral.

"It's really hard to believe that he is gone," Jane said the other day on the phone. "He really felt like a member of the family."

Jane and Stephen met through a mutual friend of ours from high school, Shoshana, who lives in Cambridge, England, and knew him through their synagogue. Stephen was, they agree, a character. Tall and lanky with a distinctive gait, he relished lively debates about politics and spent hours preparing gourmet meals in Jane's kitchen and then criticizing his own results with zest.

His skepticism of all things American eventually turned to appreciation -- and even affection -- for America, and he won the hearts of many of Jane and Eric's friends during his stay in Cleveland. Many were impressed by his positive outlook, as he never complained about his discomfort, increasing weakness, or uncertain future as he awaited what he hoped would be good news about an organ donor. He was prepared to pay for the costly surgery himself.

Stephen spent much of this past summer in Ohio with Jane and Eric and his new circle of American friends. When he arrived he was considered "too well" to be eligible for a transplant, but his condition deteriorated over the summer and he became "too ill" to transplant, Jane remembered. He returned to England in early September to address some other medical complications, knowing that they would be covered under the government's health system. Stephen had fully planned to come back to the U.S., but he wound up going directly from the London airport to the hospital and never left, according to Jane.

"We really thought it would work out," she said with sadness.

Jane remained in e-mail touch with several of Stephen’s English friends, and when they signaled that he had developed an infection and was going downhill quickly, Jane -- a psychology professor -– cleared her calendar and headed across the Atlantic. When she got to the hospital just outside Cambridge, Stephen was heavily sedated and on a respirator. "I knew he knew that I was on my way, and that's my comfort," she told me.

For the next couple of days, Jane took turns at his bedside with several other close friends and relatives. She held his hand, rubbed his arms and forehead, and even though she wasn't sure what he could hear, "I told him I was there. I told him what was going on with my kids, and I told him about all the people from Cleveland who sent their love." When the decision was made to remove some of his life-supporting equipment, Stephen's father and stepmother invited Jane to be there during his final hours. Stephen was only 47 when he died. As heartbreaking as it was, Jane was so glad she could make the trip: "I would have been devastated if I hadn't had a chance to say goodbye."

The eulogy that Jane and Eric crafted was clever and touching and conveyed how much their two-year friendship with Stephen meant to them. A rabbi read it aloud at the funeral, and then Shoshana read excerpts during a shiva [formal mourning period] gathering at her house several days later.

"Stephen taught us many things during his time in Cleveland but most of all, how a person could face the most extraordinary challenges with true grace and dignity," the eulogy read. "We saw him face a situation that would have frightened any of us, endure much more than most of us can imagine, live through profound losses and disappointments, and never offer a hint that he experienced the self-pity that we all knew we’d feel, and probably feel compelled to express, were we in his position.

"His courage inspired us then and now … Dearest Stephen, tootle pip, ta ta for now, and god bless."

Consider this . . .
Even relatively brief friendships can be deep and meaningful.

If you can be there for a loved one at the end, be there.

Hospice for inmates

There's a very powerful piece in today's New York Times about a jail in which dying prisoners receive hospice care from fellow inmates. The men who volunteer for the program provide comfort and camaraderie to the dying inmates, but many also gain something incredibly profound: a sense of redemption. John Henson, a 30-year-old in prison for murder, says that although he can't bring back the life he took, "I like to think that I'm offering life to those men that I sit with before their final days."

Check out the story and related audio slide show here.

Facing the threshold of death

Sometime around 1990, when Rob was in his mid-20s, he tested positive for HIV -- the human immunodeficiency virus that causes AIDS. The illness took him to the threshold of death. But thanks to a series of experimental therapies, and with support from others, Rob stayed on this side of life and reclaimed his health. Now 45, he lives on Cape Cod with his husband, Jim, exercises regularly, and does satisfying professional work.

I knew Rob when he was diagnosed as HIV-positive. We worked together in the Harvard News Office for several years in the early 1990s, but we lost touch after he left because of his deteriorating health. I had long wondered how he was doing, but perhaps I was afraid to find out. In the summer of 2006, while driving to the grocery store, I heard a radio piece marking the 25th anniversary of the AIDS epidemic. Rob was the featured patient, and I was thrilled to hear his voice. Since then, he has shared his story and reflections with me by phone and e-mail. Here are some excerpts:

"I was diagnosed around 1989-90. I went to the Fenway Community Health Center; everyone was getting tested then, and as a gay man, I did what I was supposed to do. When I tested positive, I really didn't believe it. It felt Old Testament, like I'd done something wrong and now was being punished. But what was it that I did? I thought I had always been careful sexually."

Rob found an attentive doctor in Sam Osher of Harvard University Health Services. He developed his first symptoms within a few months and began taking the anti-AIDS drug AZT -– the first of many medications he would take over the years. After contracting cytomegalovirus (CMV), a herpes-related virus that swiftly cost him the sight in one eye, Rob began daily four-hour infusions of chemotherapy through a catheter implanted in his chest.

"Whenever any new drug came out in the 1990s, I would be on it. My medical charts would read healthy, healthy, and then fall off the cliff" because the virus was able to mutate into drug-resistant forms. The treatments' side effects were also extreme: nausea, weight loss, fatigue, and relentless discomfort -- what Rob described as "a constant feeling of very bad sunburn from the inside out." His weight fell from a normal 165 to 113 pounds, and he could barely lift up his legs to climb the stairs. As Rob told a National Public Radio reporter, "I felt like I was holding on to a little thread of life."

Although he didn't consciously feel that he was dying, he thought a lot about death.

"There were long periods when I would lie on the sofa -- I really couldn't do anything else -- and I remember thinking, 'This is it.' I read a lot then. I've always loved to read, but suddenly, literature carried so much weight and clarity for me. I reread "A Tale of Two Cities" [by Charles Dickens], and I remember really identifying with Sydney Carton, who was a bad character who redeems himself by going to the guillotine at the end. The nurse who first gave me my HIV results had said to me, 'OK, affirmation time. Say to yourself 10 times, I am good.' So any literary character where there was redemption, I especially appreciated.
 
"I read [Walt Whitman's] "Leaves of Grass" several times and could make myself feel good about dying if I pictured the leaves of grass blowing in the wind and thinking that was going to be me. I had to come to terms with 'what will be, will be.' In other words, I made a kind of peace with becoming bits of carbon that would show up again in trees. It felt like the soul could only do something similar, which seemed sort of beautiful to me.

"But that said, I never really felt like I was dying, at least not right away. I knew it could happen, but the life in me, though perhaps diminished, did not seem any less strong. I know that my support group leader and my doctor both told my family that I was likely dying and that they should consider finding a hospice and soon -- but all this was kept from me. My partner, Jim, would prop me up in the passenger seat of his Jeep, and off we'd go to the beach or the mountains. He actually put skis on me when I was really sick and down the mountain we went! Doing those things was life-affirming, but it was really hard for me physically. I just wanted to go home.

"Do I wish people had talked with me about dying? What a tough question. At one point I asked my mom if I could stay for a week in the condo they sometimes used in Rehoboth Beach [Delaware] so I could be there in the off-season and think about the way I used to go there with my family. Later on, I found out that mom was terrified that I'd decided I wanted to die in Rehoboth. It would have been so much better for everybody if we had been open about that. It would have saved her a lot of grief, and I think it would have been empowering for me to say, 'No, this is not my time. I'm not dying now.' And I probably would have added, 'I hope.'

"There are a lot of unspoken things in relationships that you just know, but I think it would have been comforting for me to talk about it."

Rob believes three things helped save him: His AIDS support group at Harvard; his doctor's willingness to collaborate with AIDS specialist Dr. Calvin Cohen, who gave him access to experimental therapies such as a three-drug cocktail that emerged as an effective treatment in the mid-1990s; and his participation in a mind/body program in Boston that offered a support group, workshops, meditation, and yoga.

In 1998 Rob felt strong enough to move to Cape Cod, a dune-filled peninsula in Massachusetts; he had always wanted to live by the beach. There, he also began to work part-time at the local newspaper, gradually increasing his hours and taking on other freelance writing jobs so he could, he explains, "establish and maintain a foothold back in ordinary life."

Thanks to Dr. Cohen, about two years later Rob joined a clinical trial to test a new type of drug that prevents HIV from entering cells, limiting the virus's spread in a different way from existing medications. His catheter was removed, and his four-hour infusions were replaced with twice-daily injections of the fusion inhibitor called Fuzeon. It worked.

Rob enrolled in a graduate writing program, found his way into publishing, and today has a successful freelance career editing fashion and interior design text books. He works from the home he shares with Jim, a playwright and theater director, and he travels once a month to New York City for meetings. Health-wise, Rob swims and bikes regularly and sees his doctor every few months. His pill intake is drastically lower than it used to be: some antiretroviral medications plus some for low blood pressure. The drugs cause no apparent side effects.

"My outlook on life is that, I don't know how long these drugs will work. But it looks like as long as my body is in this condition, they will work. Will they eventually damage my kidneys and liver? I don't know if I'm going to live as long as my grandparents (who reached 93 and 89), but I'm very fortunate.

"I know that death is part of life and that it's coming," Rob adds. "Although I still stress about missing deadlines and other day-to-day things, I do carry that experience with me, and I do feel a certain responsibility that comes with getting to live."

Consider this . . .

Literature can provide comfort to those facing their own mortality.

Don't be afraid to talk openly with someone who seems to be near the end of life.

To see a photo of Rob from the 2006 NPR story that prompted me to contact him, click here.

 

A soldier's fitting tribute

Today, President Obama will award the Medal of Honor to the late Sgt. Jared C. Monti, who braved enemy fire to rescue an injured soldier during an ambush in mountainous Afghanistan three years ago. The Army veteran was 30 years old. This is reportedly only the sixth time that this medal -- the highest U.S. military award for bravery -- has been bestowed since Sept. 11, 2001. It seems like a fitting goodbye for Sgt. Monti.

I was moved by the Boston Globe's account of Sgt. Monti's valor, humility, and selflessness earlier this month; you can find the article here.

You can also hear about the treacherous battle on National Public Radio.

Goodbye, Sen. Kennedy

I didn't have a chance to say farewell to Senator Ted Kennedy during his final voyage through Boston last week, as I was away with my family. But my heart sank when I heard the news of his death, and I flashed back to the handful of times I met the longtime Massachusetts democrat when he came to Harvard or Dana-Farber Cancer Institute (my workplaces) to speak or receive/present an honor.

Kennedy was a study in contrasts: A powerful and prolific legislator who also found time to mentor a third-grade girl by reading to her. A man of privilege –- as a New York Times reporter stated perfectly –- who lifted the lives of so many underprivileged citizens. A celebrity who was also a profoundly family man.

I realized this when I interviewed his son Ted Kennedy Jr. in 2001 for a story about his childhood cancer experience. Ted recounted how his dad accompanied him to appointments at Dana-Farber and Children's Hospital Boston in the early '70s, flying up to provide support during the 12-year-old's grueling treatments. And as so many mourners heard during the funeral last week, Ted Sr. taught his son that he could do anything he wanted, despite his artificial leg. Ted's eulogy is a loving, insightful, and beautifully crafted goodbye to a man of many passions who demonstrated the importance of empathy, adventure, and resilience. If you haven't yet, I encourage you to read it. Here's an excerpt about Senator Kennedy's final days:

"At the end of his life, my dad returned home. He died at the place he loved more than any other, Cape Cod. The last months of my dad's life were not sad or terrifying, but full -- filled with profound experiences, a series of moments more precious than I could have imagined.

He taught me more about humility, vulnerability and courage than he had taught me in my whole life.

Although he lived a full and complete life by any measure, the fact is, he wasn't done. He still had work to do. He was so proud of where we had recently come as a nation. And although I do grieve for what might have been, for what he might have helped us accomplish, I pray today that we can set aside this sadness and instead celebrate all that he was and did and stood for.

I will try to live up to the high standard that my father set for all of us when he said, "The work goes on; the cause endures; the hope still lives; and the dream shall never die."

I love you, dad. I always will. And I miss you already."

Consider this . . .

A eulogy can help lessen grief by sharing memories and values imparted by the person who has died.

Jessica's Nana

I adored my grandmothers and cherish the times we spent together and the letters we exchanged over the years.

So when I read the beautiful eulogy composed by a friend's daughter about her beloved grandmother, it brought back many wonderful feelings and memories of museum visits, shopping excursions, and other adventures with my two grandmothers.

Jessica, 18, delivered her tribute in Canada last month, after her grandmother Rose –- aka Nana -- died from cancer at age 81. Born in Poland and the daughter of working class immigrant parents, Rose went on to become an accomplished biochemist and one of her university’s first female department heads.

Her success in academia was matched by her success as a grandmother, as I quickly realized when I read Jessica's eulogy and saw some tender photos of the two of them shortly before Rose's death. I'm sharing the eulogy here:

"My Nana was … my nana. She wasn't my oma, my bubby, my grammy, my grandma, she was my Nana. I always bragged about Nana incessantly. I told everyone that she was the chair of the biochemistry department at McGill, that she was 80 and still played tennis every day, that she went back and forth from Israel to Montreal. She was my pride and joy, and I hers.

Every day I spent with Nana was an adventure. She would take me dancing in the park, she would take me to the opera, she would take me on walks around Montreal, she would take me to her lab and let me do my own experiments -- she even made going to her hairdresser exciting.

I loved absolutely everything about Nana. I loved that she traveled the world. I love that wherever she went, she always brought me back a souvenir. I love that she polished rocks. I loved that she was a working mother, a scientist, in the '50s when that was unheard of. I loved she would take me in for a week during the summer and watch over me while I went to day camp. I loved that she was the best cook in the world, but didn’t even understand the meaning of a recipe. I loved that she would do anything in the world to make me happy. Her overwhelming love sent me to the moon and back, and made me never want to leave her side.

When I was just a few months old, Nana and my Uncle Eric took me out to a local coffee shop. Now, my mom had this crazy idea that I was not to have anything with sugar so as not to get hooked. Nana ordered coffee and a cookie -- she always needed something sweet with her coffee. "Watch this, Eric," Nana directed, as she put a few crumbs of her cookie on my lips. As I tasted the treat, my eyes opened wide, I outstretched my hand -- hallelujah, I had found it! Nana and I shared our first little secret. She gave me my first taste of sugar.

Nana wanted me to have everything, to experience everything, including the sweetness of life. She made my life sweeter in more ways than I could possibly explain.  …  I can only hope that her life philosophies and lessons to live life to the fullest and enjoy every twist and turn live on in me, and that I make every single day an opportunity to live up to the model she instilled in me."
       

'Departures' portrays death with dignity

I recently had the chance to see "Departures," a film that tackles the complicated topic of death in a thoughtful and poignant way.

The movie tells the story of a young, out-of-work cellist in rural Japan who takes a job preparing bodies for burial. He finds himself remarkably good at it, despite the social stigma of the profession.

We follow the man, Daigo, as he learns from his mentor how to clean, wrap, and apply makeup to the bodies with utmost tenderness and respect. His work brings comfort to many of the mourners who are kneeling nearby, watching their loved one undergo this traditional ritual. According to one review, Daigo perfects the art of "Nokanshi, acting as a gentle gatekeeper between life and death, between the departed and the family of the departed."

Although "Departures" has cinematic flaws -- it's a bit long and predictable -- it is definitely worth seeing, in my opinion. The movie drives home the point that death is a part of life, and that there is beauty and dignity in the process of saying goodbye.

You can see a trailer and some clips here.

Saying goodbye to the son they knew

To others, Nick seems like a perfectly normal 10-year-old boy. He plays hockey and soccer. He takes piano lessons. He annoys his brothers. But six years ago, Nick was on the edge of death and received last rites -- a Catholic ritual to deliver sacraments to those who are dying. That he eventually woke up from his coma and began reclaiming his life seems nothing short of miraculous. However, he emerged a different kid, and his family has had to say "goodbye" to the old Nick and welcome the new one.

I first met Nick's mom, Kristin, at a school sports event this spring, and our conversation somehow meandered to Nick and his near-death experience. She later filled in the details this way:

Nicklas was 4 years old when he contracted mosquito-borne encephalitis in his hometown of Orono, Minnesota, a small lakeside city just west of Minneapolis. Nick was an outgoing kid who would "light up a room when he walked in," Kristin explains.

One night, out of the blue, she found him smashing his head against some bathroom floor tiles at home, screaming about the unbearable pain. At the hospital, as the medical team conducted tests to figure out his diagnosis, Nick suffered a seizure and set off the hospital's emergency code. Kristin called her husband, Jim (who was home with their two other sons, then aged six months and six years) and other family members to get there as soon as possible. The doctors stabilized Nick in a drug-induced coma, but he soon took a turn for the worse, falling into a full-blown coma with no heart, lung, or brain function.

"Jim and I were standing in the corridor of the ICU staring at each other and thinking, 'He's dying right this minute, and the doctors are going to do whatever they can, but what are we supposed to do?' I wasn't ready to say goodbye, but I didn't want him to die without being able to say goodbye. It was a very tough moment."

Kristin and Jim knew that Nick could wind up in a vegetative state, and several members of the medical team urged them to discontinue life support. "It felt as if people were doubting us left and right," Kristin recalls. "One group took us to the ethics board at Children's [Hospital] Minneapolis and tried to force us to turn off the machines."

At the same time, various nurses and doctors affirmed their decision, and their neurologist -- who was also an observant Jew – advised them to "do what you believe God would want," according to Kristin. "So we sat by Nick's bedside reading and talking to him. His older brother, Matt, would spread Playmobil [plastic toy figures] all over his bed. Nick was completely comatose; he had 15 lines at one point and was on a full ventilator, but Matt would slide the wires and tubes over, park himself on the bed, and talk to him as if he were just asleep. He’d say, 'Nick, I really wish you'd hurry up and come home. … I can't believe you haven't woken up yet.'"

As time passed, however, Kristin began wondering whether she and Jim were interfering with God's will by keeping Nick alive artificially -– since a decade earlier, he most likely would have died from his illness. So they decided to contact their family priest to administer last rites.

"It was about 3 a.m., and I left the room to get some food," she remembers. "When I came back, our priest and the Jewish neurologist had arrived and were forehead-to-forehead, praying over Nick's bed, and the nurses were bawling. One of the nurses put her hand on my hand and said, "Your son is going to live; the power in this room was more than any of us could take."

Days afterwards, Nick showed a sign of life -– by coughing after doctors removed his breathing tube to investigate an infection that had spiked in his lungs. Although the boy remained in a coma, he was breathing on his own. For the next few weeks, Kristin continued documenting Nick's journey through an online journal, and people around the world prayed for him to wake up. "Nick was on so many prayer chains," Kristin says. "He was bringing people together and closer to their faith at a time when most people would feel very dark, doubtful, and angry. We could look at him as representing hope or as anger toward God for letting us down; a lot of people chose hope."

On the 62nd day, when Kristin finally went home to rest and to be with the couple's baby, Nick emerged enough from his coma to crawl into his father's arms. That began a long, long recovery process. He could not see, talk, or walk for some time and eventually relearned those skills alongside his little brother, Luke. He had massive seizures for several years and was, at first, expected to have mental retardation. His neurological team expects his body will take a decade to fully recover what was lost, according to Kristin.

But perhaps the biggest change was in Nick's personality. "Nick used to be self-confident and comfortable walking into a room full of strangers; now he is extremely shy and withdrawn. Our social workers told us, 'The child you had is dead; he coded three times. This is not the son you gave birth to or had for four years. So you need to grieve as though you lost him and accept that somebody else has been left in his place.' People wanted to rejoice that Nick was back, but we felt we had a stranger in our midst."

On the other hand, Kristin and her family set about getting to know the "new Nick." He is gifted musically, very compassionate, and already wants to be a doctor. He also feels connected to Kristin's late brother, Danny, a fighter pilot who was killed during training maneuvers over Spain in 1989. Nick used to visit his uncle's grave regularly in Minnesota (before they moved East), and "Nicklas talks to Danny regularly. He knows they both faced death and that Nick came out on the other side. The old Nick was my brother's spirit, and I know that Danny is watching him and taking care of him."

Kristin has come to terms with these two losses by recognizing that neither the 'old Nick' nor Danny are really gone. "They have become knitted into our conscience," she reflects. "The losses are terrible, but these people were in our hearts, and nobody can take them out."
 
Consider this . . .
Saying "goodbye" can mean saying "hello" to something or someone different.

Appreciate every day, because you never know what will happen next.
         

 

Lessons from an obit writer

Boston Globeobituary writer Bryan Marquard, who has summed up the lives of nearly 800 people who have died, recently reflected on what he has learned about life through this role. He came up with these lessons:

Be nice/Don't be mean
Retire young, or don't retire at all
You don't have to be rich to be remembered
Act now
 
The online discussion thread that follows the piece, about the lessons that readers have gleaned from life so far, contains some wonderful nuggets and advice. My favorite, from someone named Cole711:

"Tell the people that matter to you that you LOVE them; take chances; find something to smile about every day; take joy in the little things."

Check out the piece here.

What lessons have you learned from life?

Goodbye, Michael

Like millions of people around the world, my heart has been aching this week. Michael Jackson, a musical genius and troubled soul, touched so many of us in life and, now, in death. The collective global grief is palpable; just go to YouTube, search for one of his songs, and read some of the comments from admirers like this one, from a child named "Dancing4lifeDiva":

"MJ ur the reason why i started dancin and singin when i first saw his video i wuz 3 and ever since then i been dancing.He wuz and still iz my idol my ro-model and inspiration he iz very special 2 everyone and im only 12 yrs old when i heard he died I fell to the floor and just cried 4 3 hrs i wuz soo heart broken."

Michael Jackson and I were born the same year, 1958, and while I was writing book reports, he was rocking the stage with the Jackson 5. Although I loved that group, Michael's music is entwined in my memories of college and beyond. I'll never forget blasting the "Off the Wall" album (yes, those vinyl discs) in our apartment senior year or partying to "Don't Stop 'Til You Get Enough" -– one of the best-ever dance tunes. I regret that I never saw this incredible performer in concert.

Goodbye, Michael Jackson; I hope death has finally brought you peace.

Consider this . . .

How Michael could move.

How Michael inspired others to dance, including hundreds of orange-clad inmates in the Philippines who re-enacted "Thriller."

How Michael helped bring together an impressive group of artists to sing "We Are the World" to support Africa relief.