Monday, April 30, 2012

Don't Ask, Do Tell: A Response

I wrote a blog post about a very sensitive subject: if you knew you were dying, would you tell your friends?

Most people were clear that they’d want to know if a friend of theirs was dying. But most people wouldn’t want to share similar news about themselves.

One of the comments I received deserved more than a quick response on the blog post. This is it:

I have cancer. Telling people was harder than dealing with the disease. The look of devastation on my best friend’s face cut right through my heart. After that, I avoided telling people as long as possible – dealing with their hurt and anxiety on top of the turmoil of emotions and fears I was carrying already (not to mention feeling ill) was just too much. And what can people do? Tell you how upset they are? For some people, they need to get to grips with the reality of having a terminal illness before dealing with everyone else’s reaction to it.

It doesn’t get more personal than this.

Yes, this is the fear everyone has, I think, of sharing devastating news. The initial reaction is bad enough, but then what? Will your friends behave differently around you now? Will they cry? Will you wind up comforting them?

I’ve seen beautiful, loving reactions from friends. I’ve seen selfish reactions from friends. And I’ve seen friends who were so stunned they didn’t know what to say or do.

But this is my response to Anonymous, for what it’s worth:

Cancer sucks and I’m sorry you have to deal with it. I hope it’s treatable and curable. Telling your best friend was an act of incredible courage. Their reaction – that look you saw – was terrible to witness, but obviously came from their love for you.

I agree that everyone needs to come to terms with a serious health challenge in whatever way makes sense to them. It’s just that sometimes the adjustment can be helped by the support of friends, to help keep you focused and sane and optimistic.

As for ‘what can people do?’ They can do a lot, though it will not seem earth-shattering to either of you. They can continue to be your friends, however you define that friendship. If you let them know it’s business as usual as far as your love for them, you’ll be giving them the chance to respond in kind.

You don’t have to make calls or visits to every single friend you have (a lot, I hope). But maybe you can designate one friend as your “personal assistant”. Have them set up a private Facebook group for keeping people up to date on your progress. That way your friends are in the loop, but you don’t have the added physical and emotional burden of responding to calls, visits, posts and emails (unless you want to). I’ve seen this work beautifully.

When my friend, Delle, announced on her Yahoo groups that she was discontinuing treatment for her cancer, there was a tremendous outpouring of love. “Save it for the funeral,” she objected. “I’m not dead yet.”

I told her it was too damn bad she had so many friends who loved her, and she’d just have to suffer through hearing it while she was still here.

Many of us who are so willing to support our friends, to be there for them in dark times, are reluctant to let them return the love.

What Anonymous decides to do will ultimately be what they believe is right for them. We all need to do what’s right for us.

Just don’t be afraid to let your friends love you as long as they can.

Saturday, April 28, 2012

The Good Men Project

A friend of mine who works with a lot of men’s groups told me about The Good Men Project. It’s a great website where men (and the occasional woman) come together to discuss what it means to not just be a man, but a good man.

Recently here I wrote about how my opinion had changed drastically, when considering how men grieve their friends. It received some really beautiful responses, here and elsewhere, including Porter Anderson’s Writing on the Ether: Engendering Grief.

I took that basic article and submitted it to The Good Men Project, where it’s posted today. I hope you’ll stop by there to read it, but also to see what else they have to say.

We all have expectations placed on us by society. Women aren’t the only ones who struggle with defining who they are.

Next week I’ll share a guest post from Karl Sprague, who has a lot to say about anger, guilt, and grieving his friend.

And you’ll also hear my thoughts on an incredibly personal response to my post on whether to tell a friend you’re dying.

Wednesday, April 25, 2012

Dying Matters 2012

Most people will do anything to avoid those end-of-life conversations. Who wants to talk about ‘extraordinary means’, much less who’s going to get your grandmother’s jewelry?

But doing so when we are able to not just discuss these issues but make decisions is something important for us all.

The Dying Matters Coalition was founded in London in 2009 “to support changing knowledge, attitudes and behaviours towards death, dying and bereavement, and through this to make ‘living and dying well’ the norm". It has 16,000 members (full disclosure: I’m one).

May 14-20 is Dying Matters Awareness Week. You may see stories pop up on TV and the Internet that will personify this year’s theme “Small Actions, Big Differences”.

It’s a great theme, because it explains those end-of-life conversations so well. Making decisions now about the kind of care you want will make a big difference not only to you, but to your family and friends.

Procrastinators do no favors for those left behind. The survivors will have a mess to clean up when you’re gone. But the worst part for them will be standing in a hospital corridor, talking to a doctor and admitting “I have no idea what they’d want.” They’ll have to guess, and they have a 50/50 chance of being wrong.

You probably have a clear idea of what you want, even though you’ve never articulated it. Because most likely, you know the kind of death you don’t want. Start with that.

Dying Matters website is a great source of information and forms to get you started. Yes, it’s a terribly uncomfortable and difficult subject to broach. But it’s important that everyone’s wishes for a “good death” are honored. And the only way that can happen is if they’re shared

You can also find Dying Matters on Facebook Dying Matters and on Twitter @DyingMatters

Monday, April 23, 2012

Carpe Diem

Sayan Sarkar

“Why do we wait until it’s time to bring in Make-a-Wish to go after our dreams?”

I’m paraphrasing a friend’s question on her Facebook page last week. The short answer is…because we’re human. Despite that fact, we also believe we have unlimited time ahead of us.

A lot of people realize this – for good – when they reach middle age. It’s not so much the passing of their parents – they’re older and it’s “expected”. It’s the deaths of their friends that shock them into action.

Sayan Sarkar is President and CEO of InvigorateNOW. He’s a young man with a winning smile. He recently wrote an article for Huffington Post, “How Grief Can Be An Impetus For Change”.

He wrote of his best friend from college, who died suddenly at the age of 23. They’d fallen out of touch; not intentionally, but just in the way friends with busy lives fall out of touch. As is often the case these days, he found out about his friend’s death in a Facebook message that went out to his fraternity brothers.

“My heart dropped. My pulse was racing. I was crippled with fear, anger, resentment and confusion. Lunchtime came soon, and as a spiritual person, I searched for silence and a place for prayer in this time of crisis, and pray I did. I prayed that this was not happening, that I was in some sick, tragic nightmare. I prayed that I was not actually losing one of my closest friends. Sometime later, I took the long, heavy steps back into reality – the reality that my friend actually was gone, never to return.”

Most people his age aren’t confronted with this kind of reality. But Sarkar channeled his grief to “continue my pursuit of happiness”. In less than a year, he’s almost lost 55 pounds, quit smoking and alcohol. He’s started a side business to share his passion for health and charity. And though he admittedly still struggles sometimes, he makes a conscious effort to connect with loved ones – family and friends – consistently.

How about not waiting until grief knocks you down? How about seizing the day today?

To read the entire Huffington Post article: How Grief Can Be An Impetus To Change

You can follow Sayan Sarkar on Twitter at @invigoratenow

Friday, April 20, 2012

Live For The Moment

From "Live For The Moment"
They’re called “The Dangerous Demographic”: young men. And why not? They think they’re immortal, taking risks that make the rest of us cringe. They race cars, climb mountains, take chances…because they can.

But what of those left behind when things go horribly wrong? What about their friends?
A study at the University of British Columbia is shining a light on this previously invisible group of mourners. How do young men grieve their friends, those who have died suddenly from accidents?
Not surprisingly, the researchers found that men in their 20’s were not immune to societal pressures to ‘man up’. What may surprise you, according to UBC post-doctoral researcher Genevieve Creighton, is that over the long term, suppression of grief can put these young men at risk of illness, injury or premature death.
Participants in the study were interviewed and asked to take photographs. The photographs convey not just grief, but an effort to remember and honor their friends.
The photograph above is about remembering. Another in the exhibit (not available online) is explained by Markus, age 25:

“I just felt like there were all of these cracks in me. Like I would not be the same person. That’s why I took a picture of this concrete.”

I don’t know about you, but I have a crystal clear image of that concrete.
The photographs make up an exhibit entitled Live For The Moment: a research-based photo exhibit about life, death and young men, opening at The Fall Gallery in Vancouver, BC, on April 27.
This is important work. I can’t think of a demographic group more invisible than young men when it comes to grieving their friends. If you are in the Vancouver area, make a point to see this exhibit. Hopefully, it’s something that can be shared with a wider audience, too.
Men need someone to listen, and obviously the researchers did just that. Kudos to them.

For information about the exhibit and the research project: Live For The Moment

Wednesday, April 18, 2012

What To Do With Survivor Guilt

Old friends on the park bench
“I had no idea he was so unhappy.”
That’s a line from The Big Chill, when Alex’s friends are trying to make sense of his suicide. But it was echoed in a phone interview I did this morning.
We had spoken earlier in the week, about one of his friends who died a long time ago. But today we talked about two other friends who died since then.
A group of them had spent the weekend at a reunion, and from all accounts, had a great time. So it came as a complete shock when two weeks later, one of them committed suicide.
“I had no idea he was so troubled,” was the observation. The friend had a drinking problem, though he showed no signs of it when they were together. But as most of us know, that doesn’t mean anything.
There was plenty of regret in his voice, twelve years after his friend’s suicide. What complicates this kind of grief is not knowing: not knowing the cause and who or what to blame.
Being (mostly) rational beings, we like to have pat answers to life’s mysteries. But this is one time when there are rarely answers that satisfy us.
He never said he felt guilty…exactly. But there was certainly regret in his voice.
What if his friend had given a sign that he was troubled? Could he have talked to him about it? Could he have gotten him past his dark mood? Could he have helped? They weren’t close, but still…
There are, of course, no answers to those questions. He’ll never know what, if anything, anyone could’ve done to prevent that suicide.
Before we hung up, we discussed two other friends – all from the same group – who are very much alive. We talked about what they’re doing now, and by the time we hung up, he decided to call one and visit the other.
Guilt doesn’t really serve a useful purpose. It’s often what gets us stuck in our grief. And although he may not have made a conscious connection to the friend who committed suicide, his decision to re-connect with other friends made me smile.
If you’re feeling guilty about a friend who died, if the regrets feel overwhelming, do something to avoid feeling that again. Reach out to friends who are still here.
You’ll be glad you did.

Monday, April 16, 2012

Worrying About Your Friends

I don’t know about you, but I’m getting tired of finding out about the deaths of friends. It’s not that I was close to all of them, but they were still a part of my life at some time. So I decided to revisit this post from last spring, because it’s still true.

At the end of the morning roll call on the 80’s hit Hill Street Blues, Phil would always remind his comrades “let’s be careful out there.”
They were cops. They knew every day could be their last.
Not everyone lives that consciously, certainly not when they’re younger.
But the truth of the matter is, the world is a dangerous place. Stuff happens, no matter where you live.
We can eat healthy foods, exercise every day, do all the things that are supposed to “guarantee” a long life and still not reach that goal.
This photo is from my 40th high school reunion. Each rose represents one girl from my class of 122 who died; there are 9. One died our senior year, the most recent, two years ago.
As we age, we lose more and more friends. It’s just the law of averages, and not unexpected. What we don’t expect are the “before their time” deaths.
We don’t expect to experience a friend’s death before we’re old enough to vote.
We don’t expect to experience a friend’s death before our hair turns grey.
We don’t expect to experience a friend’s death, period.
So when it happens, we can become skittish, paranoid about our remaining friends. We pester them to lose weight, exercise more, or have that mammogram. We probably annoy them beyond words, and they might even tell us to back off.
Too damn bad.
The price of being a friend is that you are loved. And you’ll just have to live with that.

Thursday, April 12, 2012

Survivor Guilt

St. Paul's Chapel near Ground Zero
Perhaps because I’m in New York right now, or because I’m re-visiting the 9/11 Memorial this evening, I had survivor guilt on my mind.
This is a post from last year that looks at how guilt – and anger – complicate grief for your friend.

In keeping with what turned out to be a week of considering anger’s role in grief, I thought I’d turn to one of the triggers for anger: survivor guilt.
The research for my book has provided a glimpse into some typically closed societies, among them military and firefighters. Both are groups charged with keeping us safe, both are groups whose jobs are so dangerous they know every day is potentially their last.
The people they work with - men and women - are a tight-knit group. They consider themselves a family; Band of Brothers was not an accidental title.
Because of the nature of their close living conditions, and the hazards of their work, they must have complete trust in each other. They hold our lives - and the lives of those who work with them - literally in their hands.
Their grief is complicated by these unique situations. Their workplace is their home, after all, sleeping and eating together as well as fighting fires or the enemy. They spend most of their time with their co-workers.
In David Halberstam’s excellent book, Firehouse, about his neighborhood Upper West Side firehouse after 9/11, he recounts the difficulties faced by the one firefighter who survived that day. Twelve answered the call; one came back. He only survived because a photographer on the pile saw him sticking out of the rubble and got him to medical assistance. He was lucky.
But there were those who did not consider him lucky: they resented his survival. Why him? Why was he the only one to survive? He became the worst kind of celebrity, getting attention for something that he was embarrassed about: surviving.
Sgt. Dakota Meyer, whose story was told here last week, disobeyed orders to help his men, rescuing 36 American and Afghan soldiers. But that superhuman accomplishment is tarnished by his own survivor guilt. While he was able to help retrieve the bodies of four comrades (a fifth died later of wounds), he was haunted by the fact that they didn’t make it.
Yes, surviving is its own reward, and cause for celebration. But as story after story after story of heroism in the military, in the first responder community, even in daily life has proven, sometimes it just doesn’t make sense who lives and who dies. There is a randomness that doesn’t satisfy our need for clean, logical explanations.
“I just talked to her a week ago.”
I’ve always found it a little amusing when people say things like this after a friend has died. What? They must be alive because they talked to you recently? We grasp for straws, for explanations - no matter how bizarre - to help us understand.
One of my earliest blog posts was about the episode of Family Ties where Alex suffers from acute survivor guilt when his best friend is killed in a car accident. “I should’ve been there,” he cried, as if he had the power to prevent the accident and save his friend’s life.
There’s an episode of Doctor Who where we see that his companion, Donna, could’ve missed meeting him altogether. She is sitting in her car at an intersection, arguing with her mother about whether to make a left turn or a right turn.
Sometimes it’s as simple as that - your choice of direction at an intersection dictates the rest of your life.
Stories of 9/11 are full of these kinds of random, unconscious decisions that literally meant the difference between dying with your co-workers on the 91st floor and surviving: stopping for a shoeshine, walking your child to the first day of kindergarten, changing shifts with another firefighter. And every one of those stories includes a variation on “I don’t know why I’m here and they’re not.”
I don’t think there’s any hard and fast rule for coming to terms with survivor guilt. Some people deal with it by making sure that their friend is always remembered: charitable contributions, family support, or maybe finishing a project they started. Some people use their friend’s death - and their own survival - as a catalyst for making sweeping changes in their own lives. Every one of them struggles with the unanswerable question, “why?”
For them - and for us all - surviving isn’t enough. We need acceptable answers. But we have to accept that we probably won’t get them, at least not in this lifetime.
We also need to remember that just surviving isn’t enough.
We need to live each day to its fullest, and be grateful for having known that friend.

Monday, April 9, 2012

Don’t Ask…Do Tell
Last week I posed a couple of questions: If a friend of yours had a terminal illness, would you want to know? If you had a terminal illness, would you want your friends to know?

I got some interesting feedback – both privately and on my Facebook page.

For the exact same reasons, the consensus was:

“I’d definitely want my friends to tell me. But I wouldn’t tell my friends.”

I wasn’t terribly surprised that people feel that way. Often we expect others to do things we ourselves are reluctant to do.


This isn’t expecting someone to bail us out of jail or share their psych notes. This is about sharing something so serious that anything else pales in comparison (with the possible exception of telling someone we love them).

“I’d definitely want my friends to tell me.”


Well, there were several answers: to not be blindsided, to find out the facts, to help, to be a comfort to their friends. We’re talking about people we love. We want to help ease their anxiety and pain in any way we can.

No one thought their behavior would change. They assumed they would act normally around their friend.

“But I wouldn’t want to tell my friends.”

Why then, does it not work both ways?

That ‘look’ is what people didn’t want to see: the look that is really deep concern, but often interpreted as pity. They assumed their friends would treat them differently.

Knowing a secret can be exhilarating. It can also be lonely. Knowing you are going to die – not in a theoretical, but a very immediate sense – if a profound experience. You have no instruction book or guide. No one can tell you the answers to the questions that keep you awake at night.

But keeping a secret like that from your friends not only unnecessarily isolates you, but it hurts your friends. You may not know how hurt they are. But you will hurt them. Because they will also be asking ‘why’?

Why wouldn’t he tell me?

Why wouldn’t she let me help?

Why did he suffer alone?

Why didn’t she love me?

I had a friend who shared her battle against breast cancer, but only to a point. She wouldn’t let anyone visit her, much less help her. In fact, there were only three people she’d talk to on the phone. For reasons I still don’t understand, I was one of the three.

When she died, her friends gathered at the funeral parlor. We sat in the back of the room together: the angriest group of people you’d ever want to (not) meet. It wasn’t enough that we were angry she had died. We were also angry that she’d shut us out. Because even though we couldn’t cure her cancer, we believed we could’ve made her last weeks a little more comfortable.

That was her decision, and we had to respect it. Everyone’s entitled to make their own decisions about who they share their diagnosis with. But it didn’t diffuse the anger.

But for those of you who expect your friends to do something you’d refuse to do…think about your friends. And how angry they’d be.

And think about how angry you’d be if the situation were reversed.

Friday, April 6, 2012

A Bucket List Contest

Friends having a party
Everyone loves a contest, the chance to win something they want. Millions of people buy lottery tickets every week, knowing full well the odds are against them. But it gives them time to dream.

It’s not surprising that when the media interview people buying tickets for a particularly large lottery prize, they always know what they’d do with the money: quit their job, travel around the world, put their grandchildren through college. No one ever says “I’ve never really thought about it” because everyone can fantasize about what they’d do with millions of dollars.

Not all dreams are big. Some are simpler, smaller: take your family on a real vacation, get that swimming pool for the backyard, give money to your church.

But they’re all dreams, important dreams that you want to accomplish before you die. You know you’d feel bad – regretful if not guilty – if you died without doing those things. I’ll bet there are things right now you wish you had done with a friend before they died.

Huffington Post, in partnership with “The Buried Life” TV show, is running a ‘bucket list’ contest. The “What Do You Want to Do Before You Die?” contest will award $2,000 towards the fulfillment of your dream.

You may say, “that’s not much” or “that’s not enough”, and perhaps it isn’t. But it’s enough to fulfill a lot of people’s dreams, and even enough to begin to fulfill others.

The link below describes the contest, and a link in the article lists the rules. The contest is open only to people in the lower 48 and District of Columbia: residents of Alaska, Hawaii, Puerto Rico and other countries are not eligible.

What would you do with your $2,000?

Would you throw a fabulous party for all of your friends?

Would you go visit that friend you haven’t seen for years?

I know what I’d do: I’d spend the $2,000 on a month away from home, so I could finish the first and second drafts of my book. I have a couple of places in mind; I might split my time between the two. The weather wouldn’t matter, but in both places, I could walk for exercise and to think.

So, again, what would you do with your $2,000?

If you don’t have an immediate, clear, passionate response, ask your friends what they’d do. Get some inspiration from them.

Start dreaming.

And whether you win or not (deadline for entries is April 19), why not commit to doing something right now, today, to make those dreams come true. 

I bet your friends are up for a party.

Wednesday, April 4, 2012

Blindsided by a Friend's Diagnosis

A lot of presentations at the recent ADEC (Association for Death Education and Counseling) Conference had to do with end-of-life issues. One of those issues is notification: who is told about a patient’s diagnosis? How are their relationships affected by the news of impending death? I thought I’d revisit this post about how it feels to be blindsided, because you weren’t told your friend was dying. What would you do if you were in their place?

We’ve all done it, unconsciously, and with no malice intended.

Perhaps our friend tells us that they’re dying. Perhaps we hear the news elsewhere, and then see the person later.

But anyone who’s been seriously ill, or is dying, can tell you that they get “The Look”. You don’t mean to do it. In fact, you might think the expression on your face is one of love and support, successfully hiding the shock and pain you feel inside. Unfortunately, it’s often interpreted as pity.

I’ve read stories of people who were dying and kept their diagnosis secret specifically because they didn’t want to see “The Look” on their friends’ faces. I know people who have isolated themselves, refusing visitors, because they don’t want to see it.

They’re afraid their friends will act differently, too. We’re all used to the way we interact with our friends: joking, teasing, rowdy and outrageous. But in study after study, people who are dying insist they want to be treated the same way: be concerned, don’t be afraid to ask questions, but don’t treat me like a baby.

They want you to continue to be their friend - the same as always - without dissolving into a puddle of tears every time you look at them. And honestly, you want the same thing, too.

But there is a special pain reserved for friends who are kept away, either by the friend who’s dying or their family. You may have felt it yourself. Not fun, is it?

“I didn’t know they were sick.” Wouldn’t you love to have a copyright on that phrase, and make money every time someone said it? It’s hard enough to cope with the death of a friend, but harder still when you’ve been kept out of the loop. It makes you question just how much of a friendship you had with them.

As shown in the movie “50/50”, this can put a huge burden on the patient. They feel responsible for the happiness of those around them. They hold in their feelings, so as not to burden their friends and family. It’s a very human, loving reaction, but how sad to be unable to express yourself honestly when the end of your life is approaching.

Don’t let that be your friend.

And don’t let that be you.

Monday, April 2, 2012

It’s Time to Get Angry Again

The late, great Keith Haring
I attended the “Beyond Disenfranchised: LGBTQ Community Resilience and Healing” session at the ADEC (Association for Death Education) conference last week. It was my last session of the only day I was able to spend there. Much like the lunchtime networking group on Buddhism, something drew me to this.

It was clear from the start that there was frustration in the room. Some of it was directed towards ADEC, and how the LGBTQ community’s experiences (particularly in terms of medical directives and emotional support for end-of-life issues) were not being included in the larger discussions. The panelists were on the front lines, both in terms of the LGBTQ community as a whole and HIV/AIDS services (which are NOT the same thing).

In fact, they’d been in the trenches a long time – a couple of them since the beginnings of the epidemic in the 80’s. I found myself nodding, as one man recounted his experiences in Seattle: scrambling to find a funeral home that would handle a body that had succumbed to AIDS, the need for the gay community to open their own hospices because existing organizations shunned HIV-positive patients. Memories – not pleasant ones – flooded back.

ACT-UP (AIDS Coalition To Unleash Power): demonstrating, demanding that government officials break their silence and help their community, setting the example for supporters of breast cancer research and other causes. They were outrageous and loud but they had to be, because of the indifference and hostility they faced. Remember their motto?

Silence = Death

Eventually, I raised my hand, and said that when I wrote my article last year for Windy City Times (see the Articles page), I was stunned by how much anger I still felt. Some of the anger was about how I was treated, but most was about the injustice and prejudice and outright hatred I witnessed.

That, as I alluded to in Friday’s post, ignited a very impassioned discussion. I’m sure everyone left there believing that it’s time to get angry again. Why?

Because new infections are on the rise, not just among young gay men, but straight women over the age of 50.

Because the incredible medical advances of the past 30 years, which have allowed people to live decades after being diagnosed HIV-positive, have contributed to a dangerous complacency: “oh, it’s just like diabetes – no one dies from it anymore.”

Because for all of the societal victories by the gay community – especially legal, not just including marriage/civil unions – there is still a perception that HIV/AIDS is “their” problem.

I apologized to a couple panelists afterwards, for introducing anger into the conversation. But as I’ve had a few days to reflect on this, I realize that I blurted out my comments for a reason: I really am still angry.

Thirty years ago, I remember believing “ten years; in ten years they’ll have a cure or a vaccine and this will all be over with.” That didn’t happen.

AIDS has been around for almost half my life. It defined a large part of my adult life, not just because of the work I did in the community, but because of the friends I lost to the disease.

The mere idea that it’s still around, that people are still being infected around the world, that those who suffer from it are still stigmatized, that most people feel it has nothing to do with them…well, yeah, I’m still angry.

You may never have lost a friend to AIDS, but the cause ultimately doesn’t matter. All that matters is that you lost a friend you loved.

You may never have consciously felt angry about their death. But it may be that you just never admitted it, especially if you somehow blamed them.

As I’ve said before – and will undoubtedly say again – it’s all right to be angry when your friend dies, no matter who is the target of that anger. Feel angry, without feeling guilty about it.

The bigger issue is…what are you going to do with that anger?