Look maw – I’m so purdy!

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Man-Up Cover

Man-Up Cover

So a while ago, NZ’s male roller derby skaters were asked if they’d like to do a fun project to support the women’s Team New Zealand as they travel to Dallas for the World Cup.  Apparently we would be doing a “Man-Up” calendar, in which we’d be re-creating classic pin-ups but as our manly selves.  (Well, some of us manlier than others; it’s not a word I use for myself very much. ^_^)

The men jumped at the chance right away, especially after seeing some examples on the internet of what this could look like.  It was just too unique and funny to pass up, not to mention that we really wanted to support the female skaters.  We all work closely with female skaters, after all; most if not all of the male skaters are coaches and refs in predominantly female leagues, since roller derby is as yet a predominantly female sport.

Our plan called for absolute secrecy; we’d only reveal our project when it was fully realized as the beautifully-crafted item that it turned out to be.  It was tough keeping the secret for six months.  I had to let a couple of people in on it: my wife, who thought it was hilarious (and worked hard to sell advertising and to sell units after they were printed); my derby wife, who thought it was hilarious and who arranged sponsorship from my league; my photographer for obvious reasons; and one other skater because I needed to borrow a garter belt.  :p

We got to see a video of the moment that the finished product was revealed to Team NZ, and that more than made up for the effort and the 6 months of secrecy.  It was priceless.  The finished calendar is incredible, too; Pieces of Hate, the head coach of the team, is an art director in real life and put in over 1000 hours of photography, editing, and putting it all together into awesomeness.  Everyone who has seen it has not only laughed at the photos, but admired all the little design touches and vintage flair.

And of course everyone thinks Miss-ter Novermber is pretty sexy.  😉

Here I am smokin' hot as Mr. November!

Oh, and you can get your copy from me if you want one.  But you’ll have to act quick, cuz only 2000 copies exist in the whole world, and they’re getting snapped up fast.

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“Do we have the right to die?”

That is much the same as asking “Do we have the right to be human?” Death is our birthright and destiny, the common point at which all of us are due one day to arrive. It is written into our DNA. It is even part of what makes us who we are, literally; a specialized kind of cell death called apoptosis helps create our fingers and toes while we are in the womb, for instance.

The question would better read “Do we have the right to manage our death?” And yet again, the answer would be that managing death has always been an inherent part of our lives and our history. From the hunter-gatherer trying to fill her belly to the St. John’s paramedic trying to resuscitate a patient, the human species has spent its entire time on earth trying to manage death, mostly by staving it off.

The management of death is already a multibillion-, if not multitrillion-dollar business across the world. The medical and pharmaceutical industries, the funeral industry, even the military industry are all directly involved in death in one way or another, and that accounts for a lot of human capital and effort. Add in the people selling supplements, the mystics and religious leaders who are ready to weigh in with their teachings, and you’ll find that death occupies an appropriately prominent place in our efforts and our thoughts.

Which makes it a little strange that the question of “allowing people to die” is such an upsetting question to a small minority, and indeed that it is a question at all. No force on earth could compel me not to die, even if I didn’t have incurable cancer. (Would that it could!) Those very few who are opposed to assisted dying, the real issue currently under discussion, would have to acknowledge that I will die because I am a mortal man and because I have cancer, and they would have to admit that I could also not be prevented from committing suicide either. Some of the more mean-spirited among then have suggested that I go ahead and do so, simply for having shared my story and my thoughts with the media this week; suicide is a lonely and violent act, though, with different connotations than assisted dying, which is meant to be a peaceful and dignified death.

I honestly can’t think of a reason not to allow people access to that peaceful and dignified death when death is otherwise imminent, especially when that death would be accompanied by suffering that cannot be relieved by palliative care. (Brain damage, personality changes, seizures, loss of function, memory loss, etc; it’s a long list, and that’s just for brain cancer.) Our laws reflect the value that our society places on individual rights, freedoms, privacy, wellbeing and autonomy. Now that we have abolished the death penalty, we no longer tell people that they must die; is it more just to tell someone that they must live? What would give us the right, as individuals or a society or a State, to try to dictate someone else’s response to life’s most private, profound, and fundamental existential questions? The importance that we place on this subject is already acknowledged in our idiom “life and death,” which we use to signify that something is of the very utmost importance.

I feel that being able to choose to die in a way that is painless, peaceful, and legally and socially recognized is of the very utmost importance. The balance of life and death is something we spend every second of our lives dealing with as it is; when the end comes for a terminal patient, it is no less important a thing for them, and might indeed be the only thing over which they have any control.

If we are compassionate enough to give it to them.

Why End of Life Choice matters.

Phil’s wife here.

At the time Phil discovered he had Grade 2 Astrocytoma, neither of us really considered assisted dying as an issue that felt particularly forefront in our minds. I’m quite sure that if you’d quizzed us and we thought about it, we’d have come out in favour of it – but so far from our young minds was this issue that I don’t think we ever actually discussed it between the two of us.

That is, until it was personally relevant.

Two years ago I came home and found my beautiful husband on the ground in the terrifying aftermath of the first of what would be many seizures. By the end of the night, we knew we were facing a likely tumour and within a couple of weeks he was in for life-changing surgery. A week and a bit after that, we got the news no one wants to get. “You have cancer. It is not curable.”

They told us he could have 10 years, or 10 months, and which of those it was really depended on when it upgraded. The progression of astrocytoma is random, but it is inevitable. No one can tell us when this will happen, only that – without any doubt – it will happen.

What followed was weeks of difficult conversation and terrifying oncology, cancer society, and neurology visits. We were given our treatment options, which to put lightly – were extremely limited. We investigated what the progression of this cancer would likely look like and it is uniquely gruesome. (For a taste of that, google “jane daniel astrocytoma” – which is an incredibly touching and detailed account of one woman’s battle with this cancer.)

We discussed palliative care and what would be available. It was possible he would be mostly pain-free (if you count persistant migraine-like headaches as being painfree, but I guess relative to other cancers, you might). But pain is not the only part of this that is scary. Your brain is responsible for everything you do and everything you are; when you lose or damage parts of it, you could lose almost anything that is important to you, whether it be a skill, your personality, your motor functions, your memory, you name it. Those things are worth considering too and unfortunately, palliative care is very limited in what it can do there. It occurs to me that even when my husband’s tumour was relatively small, no amount of medication was able to totally stop the seizures from happening. What he’s faced so far is nothing on what he will face, and for the first year after his surgery his behaviour and personality was so radically different it is difficult and painful to look back at that now.

There comes a point in the process of understanding incurable cancer that you and your partner come to the realisation that medical science is actually limited. And no matter what your position ends up being, it’s most unlikely you will not at some point have a discussion about what you will want to do when your time is running out and things are at their unrecoverable worst.

For my husband, he came to the conclusion that it is unlikely he would elect for assisted dying. However, it was difficult to have come to the level of understanding about the nature of this cancer and not understand why someone else might make a different choice – and why he’d rather know that choice was there for him too. I find it rather indecent that anyone else would tell my husband, or anyone in his situation, whether or not he has to endure all of that.

The choice to endure or not to endure is a big one. Demanding that of someone is asking them to endure outrageous suffering. It should not be your choice based on your motivations and beliefs. It should be theirs.

This happened today.

So, this happened today.

For those of you who don’t know, Brittany was diagnosed with the same type and grade of cancer that I was. She wasn’t as lucky as I have been; hers went from grade II to grade IV in just seven months, where mine has (knock on wood) remained without recurrence or upgrade for two years now.

Lots of feelings about this one, I have to say. It’s sad to see another person going through what we’ve been through and what we will further go through when mine recurs and upgrades the way hers has. Sad to see someone inevitably losing the battle with this disease, which has a lethality rate of 100%. Glad that she got to end things on her own terms. Horrified, however, at the thought of doing that myself.

Back when things were at their worst for me–I was at the worst stage of brain injury, I was still reeling from the diagnosis, my life was imploding–suicide and euthenasia were thoughts worth considering. Even when things were more or less ok, Michelle and I had to have some really, really tough talks about what might happen in our future, and what ways we could handle it. Three things made the future feel the most awful: the inevitability of it, the unpredictable timeframe, and the sense of near-total helplessness surrounding the whole thing.

It occurs fairly early on in this process that one piece of control that a person can have in these circumstances is when to call it quits. That’s true for several areas; you can call it quits with treatment, you can set out your wishes regarding resuscitation and whatnot in your power of attorney, those are normal and accepted means of control. But the ultimate one, which Brittany was allowed, would be when you are allowed to say “ok enough is enough; I don’t want to live through terrifying seizures and pain and neurological decline. Maybe I want to die as ‘myself’ before surgeries and radiation change my brain so much that I am no longer who I was.” (<–That’s a thing that can very easily happen, btw; I’ve got plenty more to say on that topic, another day.) That’s one that’s not allowed, or at least certainly not acknowledged or facilitated, here in New Zealand.

I think it should be. I can’t think of a reason for it not to be, honestly.

But the thing is, I can’t imagine ending my own life like that. Certainly not right now, when I am almost healthy enough to live normally.  I look at Brittany’s action, and while I firmly believe she had the right to make it, I recoil in horror from that idea myself. The reason for that is that my family is what’s keeping me here. Early on, when I faced my darkest days, it was the thought of my daughter’s little face and her smile that made me want to live every second I could. My mantra was “Every day is a blessing,” and that has gotten me through a hell of a lot. I want to be here to soak up every bit of my family that I can, and to be here for them as well.

That’s my perspective, my choice, and my motivation, though. Everyone else has got their own, and I don’t think mine should influence theirs. I think that it would be rather indecent for us as a society to try to hold this great existential power over sufferers of illness. This is a far more benign form of control than the flip side of the coin, when the state dictates that someone’s life comes to and end; I’m glad that New Zealand does not practice such barbarism as the death penalty. But I think that going the distance, for fairness and compassion and human rights, would mean allowing people to die in a humane fashion at a time of their choosing, rather than just leaving it to disease and whatever medicine can do about it. I’m glad that Oregon has made that decision, and allowed people like Brittany to make theirs.

Cancer Books for Children

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Going through the local library’s selection of children’s books about grief, death, and/or cancer was fucking brutal. I was sitting there in a total state, crying as I read about Willy’s dead Grampa, the Bear’s dead best friend the sparrow, and Jake’s dead best friend the dog named Hopper.

I totally couldn’t handle it. I thought I could, but I couldn’t.

Right now from the living room I can hear Michelle reading the story about Mom’s Cancer to River, and she’s somehow managing to keep really calm about it.

Cologne for A Papa

River and Michelle went shopping a few weeks ago, and River sampled lots of different perfumes and colognes. For Poppa, she picked Jean Paul Gaultier‘s “Classique,” and Michelle brought home a wee sample card.

I rather liked the smell, and thought if it was affordable that we might buy some. But first, my question was, “Do you think this is a scent they’ll be making for the long-term, like Chanel No. 5?” Michelle was a little puzzled, so I explained that I thought that if that were the case, it might be worth investing in it and wearing it every day so that when I die, River can always buy a bottle of a smell that’s just like Daddy and helps her remember me.

Gosh, actually writing that out really hurts. I feel so bad for River. She never deserved what is inevitably coming for her. I feel awful that this is in our future.

Better Concussion Detection for Youth Athletes

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Nothing could have helped me avoid a brain injury; but this process would help a lot of athletes avoid them, and avoid the kinds of struggles that come along with them.

There’s an unfortunate misconception out there that the brain has the miraculous ability to “rewire” itself and overcome even severe injuries. The truth, which I am living every day, is that the brain can compensate to a point, and no farther. You will experience permanent changes or even deficits, if two years’ experience is to be believed.

My brain injury was (I suppose?) relatively minor; rather than being hit by a car or being injured by an IED, my injury was given to me by abundantly skilled surgeons in the service of taking out a brain tumour. But it was a brain injury nonetheless, and two years on the effects have become a constant presence in my life. Fatigue, confusion, holding onto a thought, multitasking, difficulty making new memories or remembering to do things, difficulty thinking of the right word, difficulty remembering people’s names (such as co-workers I’ve known for years), and a decrease in my writing abilities are just some examples.

If my experience is permanent and universal, it tells me that brain injuries change a person forever. And that is a really big deal. In my opinion, there’s no activity in the world that would be worth performing where there is a significant risk of head injury.

Down Yonder

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This song makes me think…

…You know, if I could just transport my NZ friends and family to the right time and place in the American South, they would totally get it. If we were hanging out on the banks of the Brazos on a muggy spring evening, skipping stones and fishing and picking up chunks of petrified wood, then heading back up to the pasture for a bonfire and finally retiring to the farmhouse for real, proper barbecue in the form of a smoked brisket etc…there’s no way you could miss the obvious and unique magic just dripping out of everywhere.

I will always miss those places, and even just the feel and the smell of those muggy summer nights back home.

None of which, by the way, has anything to do with this crazy mustachioed cracker waterskiing. Just saying that the words of the song remind me of being out in the country, which is something everyone should experience at least once.*

More on the The Kelli Smith Appeal

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More from my friend Tom Attwater. I like the letter he’s written his daughter. I’ve struggled all along with how to leave River with my love and advice; haven’t known how to put it all into words, or who to aim it to (older River versus younger River.) I figured it would have to be a multi-volume work. But Tom here has distilled some fantastic advice into one short space, and I think it will make sense to her and be important across a lot of ages.

Of course now I’m a bit of a mess after watching the video, and it wasn’t really the best way to start the morning, probably. But it’s still lovely (while being horrible.)