Tuesday, October 29, 2013

"Dallas Buyers Club"

Matthew McConaughey (Focus Features)
“You’ve got 30 days.”

To live.

We’ve just met Ron Woodroof, an electrician and rodeo cowboy, who seems to spend an equal amount of time getting drunk and having sex. Suddenly ill, he finds himself in the hospital, being told what was unthinkable for a straight man in 1985: he was HIV positive. “Get your affairs in order,” the doctor tells him. He doesn’t. Instead, his crash course in research about AIDS makes him the most unlikely – and initially, unlikeable - cinematic hero you will even encounter.

Based on a true story, Dallas Buyers Club recounts with great authenticity a moment in history. Rock Hudson had just died. Tens of thousands of non-celebrities had died of AIDS. ACT UP hadn’t been formed. It would be three years before President Reagan actually said the word “AIDS” out loud. It was five years into the epidemic, and there was no known effective drug to treat those who were infected. Most people still believed only gay men – and IV-drug users – were at risk.

Woodroof, played by Matthew McConaughey, is scammed by a hospital employee who for a time sold him AZT – only available to those in a clinical trial, and even then, only to those who weren’t unknowingly getting a placebo. But he refers Ron to a doctor in Mexico. There he finds alternatives to AZT not available in the US because they hadn’t been approved by the FDA. That didn’t mean they weren’t effective – just not approved (so they were technically illegal). But when given a month to live, those are details easily ignored.

Jared Leto (Focus Features)
It doesn’t take long for Woodroof to realize that there was money to be made in the gay community. But someone that obviously homophobic couldn’t make headway. Enter Rayon, a transgender woman played by Jared Leto, who is in the clinical trial. Together they start a “buyer’s club”, where AIDS patients pay a monthly fee and receive all the drugs they need. Technically – an argument the FDA and IRS don’t agree with – he’s selling memberships, not illegal drugs.

The AIDS epidemic made advocates of unlikely people, and Ron Woodroof was one of the most unlikely. He did not live 30 days. He lived seven years. Other buyer’s clubs sprang up in New York and San Francisco, among other cities, though they tended to be nonprofit organizations. There was nothing nonprofit about the Dallas Buyers Club. And Woodroof didn’t stop at Mexico. He traveled to Amsterdam and Tokyo and wherever there were drugs that could help him and his members.

To understand the panic, you have to realize the perfect storm of 1985. The FDA demanded clinical trials where half of the patients got placebos, effectively sentencing them to death. It could take ten years to work through the bureaucracy before approval. Only AZT was “available”, though there were other drugs (like those Woodroof acquired) that could be purchased over the counter in other countries. Once diagnosed, a 30-day life expectancy was not uncommon. Those known to have AIDS frequently were fired  from their jobs and lost their homes, which happened to Woodroof.

I attended a screening with other members of ACT UP. None of us knew what to expect. But I found myself nodding my head at times: characters who were afraid to touch Ron, suspicion and misinformation, unsympathetic doctors more committed to drug money than their dying patients. I remembered it all too well.

Director Jean-Marc Vallee does a terrific job of taking us back to that moment in time: the irrational fears, the bigotry, the governmental indifference, the entrenched medical community. And his film confirmed something I said in my book: that the story of the AIDS epidemic would be about friendship. Ron and Rayon are the oddest of friends: joined by a health crisis that neither could’ve predicted, slowly putting aside their own prejudices to help themselves and others.

Matthew McConaughey and Jared Leto both give Oscar-worthy performances, and Jennifer Garner does well as a doctor who gradually comes around to Woodroof’s side.

Dallas Buyers Club is a powerful, deeply moving film that will move you and possibly offend you, too (especially if you don’t like hearing the F word). But it may be the most important movie of the year. It opens in select cities on November 1. Don’t miss it.


To watch a trailer or behind-the-scenes video of Dallas Buyers Club, click here.

Friday, October 25, 2013

Letting Your Friend Die

I think most people agree that everyone has the right to make decisions about their health. No one wants to be forced to have medical procedures they don’t want. And who wouldn’t want to decide their own end-of-life care?

But theory can be very different from practice, especially when it comes to our friends.

I remember when my friend, Delle Chatman, announced she was discontinuing treatment for yet another recurrence of ovarian cancer. Before that, she’d led us to expect miracles each time it came back. But after a month of treatments, she emailed her friends to say her body couldn’t take anymore. Everyone agreed in theory that the decision was her right. But that didn’t mean we weren’t angry. Yes, it was her decision, but no one wanted her to go.

Recently, a Facebook post to members of ACT UP NY told the story of a man who’d decided to stop taking his AIDS meds, knowing full well that he’d die. The reactions of his friends ranged from sadness to anger to outright rejection. He was lucky to have a friend who drove him cross-country, so he could die surrounded by a few people who supported his right to make that decision.

He didn’t go peacefully, as Delle did. He lashed out at those who rejected him, who tried to talk some “sense” into him. I don’t blame him.

Did they commit suicide? I don’t know. I guess in the strictest sense, they did. But this wasn’t making a decision to end your life without telling anyone.

This was different: they told everyone that they were refusing further medical treatment. They’d struggled for years with painful treatments and toxic drug regimens. They made the decision we believe they had the right to make.

And boy, were we pissed off.

The classic movie The Big Chill is about a reunion of college friends at the funeral of one of their group who committed suicide. Their responses range from shock to anger to guilt. Some of them felt they could’ve stopped Alex from killing himself if they’d only known he was considering it. They believed they had that kind of power over their friends: to keep them alive.

They were wrong.

No one wants to watch their friends die. No one wants to get that call or email, or read the news on Facebook. We expect to outlive our parents. Who expects to outlive their friends?

But the sad truth is that sometimes we do. It’s not that our friends don’t love us, or believe that we love them. But the heartbreaking decision they make is one that is their right: theirs, not ours.

Let’s be honest: we’re being selfish when we argue with them to change their minds. We don’t want to let go of them, no matter the physical cost. We want more time, more fun, more memories. Who wouldn’t?


Sometimes the best way, the only way, we can love our friends is to let them go. Let them make the hardest decision they’ve ever made without feeling guilty for upsetting us. Let them take some control in a life that has become, for them, unbearable.

You may be in this kind of situation one day: your friend has announced they’re stopping their medical treatment, a decision that will hasten their death. What will you do?

Will you try to take control, convince them to change their mind?

Will you scream and curse when they refuse?

Will you cut off all contact until and unless they come to their senses?

You’ll want to do all that and more, believe me.

But don’t – don’t let their last memory of you be of your anger and disapproval. Instead, put your pain aside, and let them know that even though you don’t agree, you’re there for them. You didn’t always agree before then, did you? Of course not, but you stayed friends.

Prove just how good a friend you are.

Let go.



Wednesday, October 16, 2013

Another Hero Remembering His Friends

Capt. William Swenson
Photo: Washington Post
Nearly lost is in the chaos coming out of Washington, DC, was the most important event of the week: Army Capt. William Swenson was awarded the Medal of Honor.

Swenson is the subject of some controversy. His believes his criticism of Army superiors, for not providing sufficient air and artillery support during the 2009 Gangjal battle, delayed his award for years (the Army said his nomination packet was lost in their computer for 19 months).
You may remember former Marine Cpl. Dakota Meyer, who also won the Medal of Honor for the same battle. Swenson questions Meyer’s account of that battle, so it was no surprise that Meyer didn’t show up at the White House yesterday. Two other Marines, recipients of the Navy Cross for Gangjal, did attend the ceremony.

Controversy aside, there is no debate over what Swenson did: risked his life to save US and Afghan troops, as well as retrieve the bodies of four of our soldiers who died in the battle on September 8, 2009.

What struck me – and many – was something Swenson did that day that was not heroic. It was not big or loud or macho. It was, instead, the definition of the bond between battle buddies.

“Amidst the whipping wind and the deafening roar of the helicopter blades, he does something unexpected. He leans in and kisses the wounded soldier on the head – a simple act of compassion and loyalty to a brother in arms,” President Obama said at the ceremony.

 (The soldier, Sgt. 1st Class Kenneth Westbrook – who with Swenson had been an embedded Afghan trainer for a year - died a month later of complications from a blood transfusion.)

But more amazing is the fact that a crew member on the medevac chopper videotaped it. Swenson says he had no memory of it until he saw the video.

“To see him and to see me in that situation gives me comfort,” Swenson said after the ceremony. “I would trade anything for that not to be our last moment, but that was our last moment and I’ll always have that now.”

We hardly ever know for sure when it’s the last time we’ll see a friend. Sometimes we are aware of the possibility, but mostly we assume there will be more time. Human nature, denial, call it what you will. But sometimes the result is being denied the opportunity tell our friends how much we love them.

I don’t know if the controversy around Swenson is warranted. Most heroes are far from perfect; so are most of us who aren’t genuine heroes. I do know that his actions that day in Afghanistan distinguished him as not only a hero, but a friend. And for that, he deserves our thanks.

Here is a video of that action. I believe it happens at about 4:10.

Thursday, October 10, 2013

Death Cafe and Other Events

I’ve been co-facilitating Death Café events in Chicago for almost a year now. Our events have attracted over 150 attendees. Some of those who attended are now facilitating their own Death Cafés, and I couldn’t be more excited.

For those not familiar with Death Café, I highly recommend their website. You’ll not only learn the history, but read fascinating accounts of what people are doing in Death Cafés in the UK, Canada, Italy, Australia and all around the US. No two are the same, but all have the same goal: to provide a safe, supportive environment for people to discuss issues surrounding death and dying, with a goal to making the most of their finite lives.

After our last event – which was filled up two weeks in advance – my partner and I sat down for a series of discussions. Obviously the need is there. The evaluations were glowing and some offered suggestions for improvement (which we’re implementing). But was there more we could offer? Were people looking for more specific kinds of discussions related to death and dying?

What we came up with was a series of events to meet different needs and interests:

Death Café: This is our introduction to death and dying issues, for people who have never attended a Death Café. We have group discussions, individual activities, as well as with a partner. As much as we can, we allow the attendees to drive the discussion topics, always with a goal of allowing people to consider their legacy. On October 28, we’ll be back at Curt’s Café in Evanston, Illinois.

"Friend Grief": This is a themed event for those who have attended a Death Café and asked for more! Our first one will be led by me at Drake & Sons Funeral Home in Chicago on October 23 and will address friend grief. Other topics are in the pipeline.

Field trips: Now at first glance, you might think our events would be limited to locations such as cemeteries or funeral homes, and that’s possible (though our first themed event will take place in a funeral home). But they’re meant to be gatherings that are more casual than sitting around a table in a room. Our first one, on October 14, is a kayaking excursion at Skokie Lagoons in Glencoe, Illinois.

Ultimately, our goal is to eliminate the resistance to attending a Death Café - or any event where the discussion is revolves around death and making the most of your life. Don’t want to set foot in a funeral home? Then come to a coffeehouse. Don’t want to discuss living wills? Then come to a Death Café where we’ll talk about lots of things.

So if you’re in the Chicago area, join us! If not, check the Death Café website for a list of upcoming events in your area. You can also find out how to host your own Death Café. It’s easy. It’s fascinating. It’s even fun.

And you’ll be surprised how much you learn about yourself in a very short time.



Tuesday, October 8, 2013

Avoid Friend Guilt

When someone dies, those left behind often feel some measure of guilt. Sometimes the guilt is directly related to the death: why didn’t I take the car keys away from him?

Sometimes the guilt is a little narcissistic, the assumption being that we had the power to keep that friend alive…if only we’d done X, Y or Z.

And sometimes the guilt is about something very personal, very small in the great scheme of things: sometimes we feel guilty for what we didn’t say.

I don’t believe I ever told any of my friends I loved them until after 9/11. The shock of that day – and later finding out that I knew someone who died in the towers – prompted me to admit what I’d felt for a long time.

When I told one friend, her reply was, “I know.” My explanation was along the line of “It doesn’t matter. I needed to say it.”

Denial, as they say, isn’t just a river in Egypt. In many cultures, death is an accepted part of life. But in the US we tend to ignore it as much as we can. Halloween might be our favorite holiday, but that’s not the same thing.

We put off making wills, come up with excuses for not attending funerals. We don’t even like visiting friends who are sick. We might think about calling, but you know how it is: we got busy.

One of the reasons I try to keep in touch with friends is that I get nervous when I don’t hear from them for a while. Okay, fine, I get paranoid. It’s rooted in the AIDS epidemic, when those with the virus would disappear from public view once their appearance began to drastically change. Too soon, you were reading their obituary.

Yeah, time gets away from us. The holidays are quickly approaching and that means we’ll have even less free time. You look at your Facebook friends, or contact list on your phone, or maybe you have a real, paper address book: so many names! I don’t have time to email/call/IM/tweet/text all of them.

You’re right. You probably don’t have time to reach out to all of them at once. And for the purpose of this post, one of those pithy friendship memes doesn’t cut it.

Pick one friend, any friend. You don’t have to write a letter, or go public on Facebook or Twitter. You don’t have to make a big production about it, though you still run the risk of embarrassing them (and maybe yourself, too).

Pick up the phone and call them. Catch up. And when it’s time to say goodbye, just add “love you”.

They may say, “Love you, too”. They may be too shocked to say anything. It doesn’t matter.

Because now you’ll never have to ask yourself, “did my friend know that I loved them?”