Tag Archives: cancer

Goodbye, Jack

We forever hear that there aren’t enough good people in politics, and today Canada mourns the loss of one of its greatest Good People.

A consummate battler for social good and civic justice for well over 30 years, Jack Layton struck a chord coast to coast as he stunned the nation with a massive come-from-behind effort that split Canada’s left and delivered the Official Opposition to the NDP for the first time ever.

Layton was the kind of man more should aspire to be. He was a leader who truly cared about the little guy. People would tell stories about how he’d approach out of the blue on the street, or how he was as earnest one-on-one in private as he was in front of thousands. They talk about how he’d get chatty with his servers in restaurants, to find out what their biggest concerns were, or how he still identified with families, the youth, and the elderly.

There wasn’t anyone, it seemed, that Jack Layton wasn’t passionate about helping.

No matter who you were or what your politics were, it was hard not to see Jack Layton as a real guy who was doing something because he was genuinely moved to live in a better world than the one we have now.

When a good chunk Canada turned around and voted for the NDP this spring, they were voting for Jack Layton, because he said we could do it. Because he said there was hope and that we had to care more about each other, not just our tax return.

It’s yet another victory for cancer.

But Jack Layton’s life was a victory for decency. His legacy will be a victory for civic service.

It’s been a long, long time since a politician moved me like this on a personal level. I’m hoping that, today, kids are seeing the outpouring of passion for this politician and are thinking “I’d like to be loved like that,” and maybe, just maybe a future of change is being created in that young mind today.

Because, like Jack says:

My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world.

With that, we say farewell, Jack. You were the right man at the right time. It’s a national tragedy your time was cut short. We will remember, and love, you.

RIP Jack Layton. 1991 Star Trek Convention

Legacies: When All That’s Done is Said

Wow, so this posting got long. It should probably be separated. I just don’t have the emotional-editorial prowess for that, so I’ll leave it all jumbled together. I’m sure as the days and weeks move on, I’ll become more cemented in what I believe about Derek’s legacy in the blogging world, but, for now, I’m less academic and more the fumbling friend amazed at the outpouring of interest in a loved, lost voice on the local scene, to say the least.

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As of yesterday, our Vancouver friend, the Penmachine, Derek K. Miller’s infamous The Last Post had gone viral both on the web and in the world’s news media. On Monday, the Canadian Press newswire went live with a story on Derek, it was picked up by American Press’s wire, and suddenly it went from 23 notable world press stories on Sunday to more than 220 press organisations (at this time) carrying this story on Derek’s passing worldwide.

I wrote last week that, in blogging, Derek would “…have told his story. A ripple in the pond. That’s all most writers really want to make — a ripple in the pond.”

Some kinda ripple, Derek. Well done, friend.

Words, words, words

I think, in the scheme of Derek’s life work, in all he tried to share with others, that the legacy being created through this worldwide exposure to what blogging can DO for a man, his life, his legacy, and the memory others get to have of him, that Derek’s changing the world’s perception of blogging.

Maybe I’m too close to it.

Maybe I know the man, his work, and maybe I want this to be bigger than it is, but as someone who’s watched the press all her life and knows what the public thinks and feels, this is a rare, rare moment when a really honest, simple, powerful statement is getting heard by the whole world.

And it’s not a world leader. It’s not some political activist dying for a cause. It’s not a celebrity known the world over.

It’s just a statement from a good Canadian man. A father of two, a guy who married his soul mate and died still madly in love with her. It’s the guy we all knew we could call with a technical problem that needed urgent solving, or who we KNEW had just happened to take a secret perfectly-timed picture of us at that event where he just had a camera. He was that guy.

And somehow, who he was, who he loved, and the life he led, that was all captured in a mere 1,500 words. His perfect 1,500 words.

Then the world read it and, in 1,500 words, realised what was truly important in life, what can all disappear in a moment.

Like Derek wrote, “As soon as my body stopped functioning, and the neurons in my brain ceased firing, I made a remarkable transformation: from a living organism to a corpse, like a flower or a mouse that didn’t make it through a particularly frosty night. The evidence is clear that once I died, it was over.”

In a moment, we’re all gone forever. Then what?

Legacy-Making

So what’s his legacy, then? Super-nice local legend loved by those who were at the cusp of all the tech/web/music developments for 20+ years? Great writer? Spokesman for cancer, early testing, and living out loud?

Sure.

But I think Derek’s legacy is bigger, with more global implications.

Derek Miller took time in his dying days to write a post that, if we’re lucky, changes the way we’ve been thinking about language, communication, social media, writing, and connection.

For Derek, blogging (and podcasting) was truth, education, community, sharing, connecting, activism, camaraderie, and putting his stamp on the world. He did it all. He stamped good.

There are a lot of really shitty blogs out there. Content farms, traffic-whores. A lot of bad blogs.

Derek was never guilty of bad blogging.

He wasn’t a “writing filler” kinda guy. He didn’t have some self-imposed turnstile of copy-quota where he “had” to blog every day. He was a writer who was compelled to share a statement, a truth, or anything, but he certainly didn’t blog so we the audience had something to read, or the PR companies with schwag gifts had reason to mailing-list him.

Derek K. Miller always blogged because he had something to say. Something smart, well-said, perfectly edited, often insightful, and never sensationalised.

Somewhere along the road in the last five years, blogging became about expected numbers, certain amounts one had to get done on a weekly basis. Some “experts” claim 3-6 posts is the “perfect” amount. They’ll tell you a “good word count,” and that Derek K. Miller’s The Last Post was 900 words too long. They’ll show you how to juice it up with “search-engine optimising,” and sex it up with a graphic or two — oh, and break it up with headings, gotta do that too.

But they don’t tell you how to have heart in your writing.

They don’t tell you that your readers deserve significant content. They don’t tell you that creativity, quality, honesty, and originality count.

Somewhere, somehow, blogging and social media became about having a social resumé, hawking your wares, getting connected, getting laid, everything someone like Derek K. Miller never bothered manipulating it for.

I’m a writin’ romantic — a passionate idealist about language, writing, and communication.

I believe that blogging is the BEST thing to ever happen to writing.

And I think blogging is the WORST thing to ever happen to writing.

But, for every site concerned primarily with driving traffic, and not worried about enriching your life, there’s a blog quietly churning out good content week-in, week-out, just like The Penmachine did.

I believe a quality blog only needs one posting a week.

If it’s great, then one will do. If it sucks, then none will do.

I believe the sparse, simple, shocking truth behind Derek Miller’s brilliant The Last Post serves as a reminder of what economy of language, a simple desire to state the facts, and opening yourself up to the world can provoke in all manner of people.

We all want to be remembered. We want a legacy.

Blogging: Whoop! There it is

Not stupid blogging. Not bad blogging. Not blogging where you’re talking about ordering a muffin.

Blog about what that muffin means to you — what do you remember when you’re eating it, what was the most emotional muffin you ever ate and why, what happened right before that muffin was served, how did it smell, how did it taste, and does the emotional overload that triggered that muffin return to you now and then when you’re enjoying one, and if so, what’s that like?

A muffin, does it matter to the world at large? No, but your experiences that determine how you feel about a particular muffin, those experiences might.

And that’s a sort of ridiculous-but-clear example of blogging is — a chance for every person to have a real, true, digital record of their understated lives. Their commentary, opinions, injustices, whatever. It’s a record.

We’ve lived in a world where publishing, media, communication have almost always been in the hands of those with money and power.

For the first time ever, we can control our words.

We can make sure others can read them, even strangers in far away lands.

AdAge magazine called Derek Miller’s The Last Post an example of the “democratization of publishing.” Yeah, okay. Sure: Cheap-n-easy self-publishing.

Personal blogging is powerful, not only for you but for the people who get to read it… and maybe even those you leave behind.

We’re told not to “tell” too much. Yeah, all this not-sharing stuff seems to be doing a LOT of good for society.

Oh, no one will ever understand what you’re enduring. No one will get that.

Derek Miller blogged about wearing diapers, yet millions are hanging off his extensive cancer-living archives this week.

You know who doesn’t know what people want to read? THEM. The “experts.”

You know what I want to read?

I want to read people who write about things that leave them feeling uneasy when they hit publish — or proud, or desperate to see what the comments are because that post mighta been pushing it or so angry while writing that clicking “publish” felt like they’d just flushed the toilet on all the shit that had ’em feeling that way.

I want to read about people experiencing life — in all its varieties.

If you CARE what I think, I probably don’t want to read you. If you think, while writing, “how should I say this to best elicit a reaction?” then I likely don’t want to read you.

If you write because you need to write, because you feel like you have something on your chest and you’re hoping writing will help sort it out, or because you just can’t NOT share THAT observation you had earlier today?

Then you’re the kind of blogger I wish everyone was.

Empowered by Blogging

Blogging is a tool we have for breaking down barriers.

We can connect, teach each other, expose injustices, examine life, do whatever the hell we want.

No longer are we under the thumb of industry when it comes to distributing our creations.

As artists, writers, musicians — if an audience is all we require, then we have the whole world before us. We have 100% artistic control. We have instantaneous access to publication and audiences. We are not at the mercy of industry. Industry is at the mercy of us, and the tide is turning.

Back in 1990 was a movie I always thought was ahead of its time on some of the issues (though dated now), Pump Up the Volume, about Christian Slater as a pirate radio DJ named Happy Harry Hard-on, aka Chuck U. Farley. The premise of all his angsty railing against society was pretty simple come movie’s end: You have a voice. Use it.

In the end, if Derek Miller’s legacy is that people realise they can use the voice they have, I can’t think of a better one. Nothing broke my heart more than to know Derek had lost his speaking voice for much of his remaining weeks in life, and to think his “eternal” voice is heard around the world now… well, it blows me away.

You have a voice. Use it. Leave a legacy of your own choosing.

And, more importantly, consider today what you’d write in your obituary for tomorrow, and take stock now of what you need to change to have that obituary reflect a life you wish you’d have been living — and an emptier bucket list.

Blogging: It’s good mental lifting. Writin’ does a soul good. Check it out, kids.

(Photos: Derek K. Miller — from Facebook profile shots he’s used.)

A Good Man Is Gone: Words About the Penmachine

There’s something really right about how people around the world are being moved to tears at the amazing end-of-life “The Last Post” published posthumously by my friend Derek K. Miller.

If you don’t know the story of Derek, you can read the Vancouver Sun’s tribute to him here.

I didn’t know him well. I had the good/bad luck of befriending him when he had less than a year left to live. We were in touch online for a few months before that, but we didn’t even meet until a year ago this week. After, I only saw him twice more. He invited me to his 41st birthday at his home, where I met his family, as well as his incredible Living Wake celebration of life in March of this year.

It’s with great sadness that I know now that Derek was friends with friends of my brother, more than 20 years ago, but we never met until 2010.

There are a lot of people I “know” today about as well as I knew Derek, but few could have me this devastated upon news of their death.

Did you see Harry Potter, the first movie? Remember the opening sequence when Dumbledore stands on Harry’s street, and plucks all the light from all the streetlamps, and the world falls dark?

I sorta felt like that when I woke yesterday and heard the news that Derek had passed. Few lights will ever shine as brightly as that man. Not for me.

On the page, erudite and expressive, profound yet simple when commenting upon the world around him, and in person, the warmest, kindest face you could ever see, with eyes that just drank you in because he was THAT interested in everything you had to say.

He was one of those rare people I consider a “hundred-percenter”. He absolutely gave 100% of himself to you, to his work, to his family, to his blog, to life. He did everything seemingly effortlessly, with grace and cool that people just don’t have anymore… even as cancer ravaged him, even to his final days.

In the end, I got to experience him the way the world did, electronically. Cancer’s not exactly awesome for one’s social calendar, so Derek wasn’t getting around much in recent months. His blog was all we got. But what a blog — an affirmation of life being worth living, death not being so scary, and how important little things are — from Diet Cherry Coke to walking the dog.

I knew he was dying, so I read his blog as he wrote it, but now I have years and years of archives to read, and I’m thankful his friends will be keeping that temple of Derek alive online for us all to experience.

Derek found me. He started following me on Twitter. I checked him out. There, in his bio, was “stage IV colorectal cancer.”

Me and cancer, we go back. My immediate reaction? I wasn’t gonna make the mistake of befriending this guy just so he could go and die on me.

And then I read his content.

I thought about it. Pretty fascinating guy. And, “it’s only Twitter.”

Followed him back. We engaged. He read my blog, commented regularly, and the exchange and mutual respect grew. Pretty standard digital story.

Then the Northern Voice conference came along in May, 2010, and I had to do a speech. The auditorium was packed with a lot more people than I’d imagined would come out, and my nerves were at Puke-Alert Level 3.

They tell you one of the public speaking tricks is to find the face of the kindest, most interested, most riveted, gracious-looking person in the auditorium, and look to them when you need someone to buoy you.

Instead of my friends, I made eye contact with Derek K. Miller and felt safe. I felt really, really safe, I let my guard down, and I had one hell of a successful talk. I don’t know if I could’ve had that same vulnerability without lucking into someone who was so incredibly responsive and supportive in the audience, like Derek was for me. He had this little smile throughout the speech, never broke eye contact for the whole half-hour, and now, whenever I think of Derek, I see him sitting left of centre in the front of that audience, his legs crossed, leaning on the armrest, his camera in his lap.

But, because the advanced stage of cancer left me unable to experience more tangibly the gift of his in-person friendship, the part of me that will mourn Derek the most is Me the Writer.

Even seasoned writers will tell you that ripping the Band-aid off and exposing your gaping wounds on the page is a tough, tough business. So many of us get wrapped up in the drama of it, dressing up the experience and making it so much more, or else totally missing the ballpark with this clinical detachment that “tells” and doesn’t show what’s going on. In those weak and affected retellings we lose the truth of the experience, and it’s nailing the truth that makes for great writing.

Derek, though, he had this incredible balance, an economy of language, and it just worked so well. His scientific predilections made him irrepressibly truthful, always, and frankly straight about it, but his heart infused his passion in his words, and his boyish wonder of the world would be inescapably obvious. Few writers can offer that combination of heart, passion, matter-of-factness, and childlike wonder, and Miller brought it all with a bang. His voice was rare.

And he wasn’t afraid. He had no pride getting in the way of telling us he was wearing diapers at the end, or in explaining physicality of the disease itself. He didn’t play the sympathy card. He simply wrote.

He wrote for the purest reason a man can write — to share his story because he knows he’s not alone in the human condition, and even if he would never meet that face on the other side of the world, he’d have told his story. A ripple in the pond. That’s all most writers really want to make — a ripple in the pond.

Derek K. Miller had one of the earliest online presences in this country. He had a legendary history on the web. He kept a weblog for almost as long as they’ve been around — 14 years now.

He wrote because he simply had to write.

He’s the kind of person I want to be when I grow up.

And he doesn’t exist anymore.

We, the Vancouver community, will forever remember you, Derek. You used the internet in the way we dream the whole world would — to teach, inspire, communicate, shed truth, entertain, build community, record posterity, and, most of all, just plain make friends.

Another good man’s done and gone, too fucking soon. Rest in peace.

**** **** **** ****

My Dream For Derek:

I love that Derek’s The Last Post is causing people to stop and rethink life around the world — from Roger Ebert all the way down to a housewife sobbing as she reads it on her iPhone in the WalMart parking lot (like a friend back east told me she did). He was that good a writer. He deserves the audience, even if he’s gone.

It’s his ripple in the pond, and I hope it ripples forever.

I would love a publisher to take his work and make it into book form. I would buy that book. I would gift that book.

I would love his amazing daughters and wife to receive royalties on his life’s work.

If Derek’s work could have a life after him, and provide a life for his daughters, it would be a beautiful, wonderful thing to behold.

The world would be a far, far better place if it were men like Derek that we all aspired to be, not celebrities.

Derek K. Miller, a man for the ages.

PS: The photo’s caption isn’t displaying for some reason. It’s a self-portrait taken in the photo booth at Derek’s Living Wake, about 6 weeks before his death. He chose it as his last Facebook profile avatar, and I think it was Derek’s funny way of toasting his friends for being a part of his life. ‘Cos he’s that kinda guy.

The New Normal

I knew I was PMSing Friday morning. I was prepared for a shitty day. Got what I was expected, with the added bonus at the end — of finding out my father has prostate cancer.

I know, everyone’s sorry, everyone hopes he’ll pull through. Thank you. Let’s not all say it, though. I’ve been to The Cancer Dance before. It ended badly.* I know there have been advances. I know it’s a different time. I know it’s probably an early diagnosis. But I know cancer.

And I know two more things: I know what I’m made of, and I know it’s out of my hands. Continue reading

My Very Emotional Day

I should be bouncing madly, ready for the Von Bondies to take the stage shortly, but I bailed on my best friend for an evening at home, after a very emotional day.

Please comment, but don’t do the well-meaning “Oh, Steff, you poor thing” stuff, ‘cos that usually gets me worked up and thinking I should be feeling sorry for myself rather than succeeding being strong.

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So, I know it’s a full moon night. I know I’m overtired anyhow. I know my week was daunting the fuck out of me to begin with. I know these things. I’m sure this is nothing. I know THAT, too.

Nonetheless, my mind went spinning a million directions. Tears were had. More than once. And in my open-space office, even. Continue reading

Motherless on Mother’s Day

I’m a daughter without a mother, and anyone who’s read me awhile knows that it’s not only what you would read on the back of my collectible Bloggers-of-Now baseball card, but it’s a fact that absolutely defines me to my core.

My mother dying destroyed me – utterly, brutally, without a doubt, destroyed me. Every now and then, someone comes along and gushes, “Gee, Steff, how’d you get so darn smart?”

I couldn’t tell ya, honestly, other than those three or so years after my mother’s death left me swimming in alcohol and as fucked up as any person’s ever been. I was a wise, smart girl before she died, and I’ve come back to who I was, but when I was shaken off-course, I’ll tell you, I fell hard and I fell far.

Climbing out of oblivion can take a hella long time, kiddies. There just ain’t no compass for that climb. I did much of my ascent over the course of five years. It’s been nearly seven since my mother left for the great gig in the sky, but over those years I’ve come to decide that the woman I am now was worth the price I paid through my mother’s horrid cancer death. It’s unfortunate, this not-having-my-cake-and-eating-it-too thing, but if her dying is the only way I’d have learned to be this person, well, so be it. Like I have a fucking choice?

I’m not writing about sex today, because I don’t care about sex today. Today’s a mental health day. My loverman’s off to see his granny, since his mother’s dead as well, and maybe we’ll hook up tonight for a couple hours, and maybe we won’t; it depends on how much the alien mind probe (aka 20 hours OT) has messed with him. My day’s plans include being a rebel and barbecuing burgers for breakfast with my brother before we head out on a grueling mountain bike ride around the city and through Vancouver’s legendary UBC Endowment Lands, home to some 70+ kilometres of primo cycling and hiking trail within city limits. And THAT is why I live in the coolest fucking city in the world.

Y’know, probably the most important lesson I’ve ever learned is that of knowing when to say “fuck you” to the world, when to unplug and go your own way. I don’t take calls from relatives on Mother’s Day, because as much as I know they’re thinking of me, they’ll never understand what I lost, nor what haunts me still. And that’s loss, pure and simple. It’s different, depending who the person was to you, and I think probably few deaths equal the impact of our mothers’. There comes a point when you just have to accept that other people care, but they just don’t know jack about what’s going on for you. Turn off the phones, ignore the emails, and do your own damned thang, baby.

We want to think we move past lost, but we don’t. We learn to assimilate it into who we are. It becomes ever-present in the back of our mindscape, like a shadow, or something we always know and need but seldom refer to, like a social insurance number.

Some days it hurts to realize who it is we’ve become in the face of such things, but some days it’s worth celebrating. I think burgers off the barbecue for breakfast with my big brother before a bitchin’ bike ride around this far is exactly what I’ve needed.

For those who can’t fathom the loss of their mothers, or for those who understand it all too well, it’s probably a good time to point out that one of the best things I’ve ever written, IMHO, is what I wrote about my mother last August on the sixth anniversary of her death. It’s on my other blog, and it’ll probably help you get to know me a little better, too.

Meanwhile, I’ll be back tomorrow with your regularly scheduled smut. Sometime Monday will be bondage, baby. Until then, restrain yourself. ;)

Happy Motherless Day, folks. Gimme my burgah! (Oh, right… I’m the grillmaster.)