Monthly Archives: April 2010

Can you believe it’s been seven years?

Tomorrow my daughter turns seven — actually, since this is late, I suppose I could say “today”! How amazing is that? SEVEN YEARS! How quickly the time has flown by, and what joy it has been filled with. I’ve done some pretty cool stuff in my life, but none of it compares to the experience of being a father, which has without compare been the greatest experience of my life.

The separation from Nefarious’s mother happened when she was just two and a half, and since then Nefarious has lived with me here in Canada other than visits to her mothers various residences. In that period she’s had three years of Casa (the Montessori system’s extended kindergarten program), and now her first year of elementary school. As a sort-of single dad (not to discount Jon or Caitlin or Rachel) I have been blessed with watching her go from toddler to a bright kid that can read anything and is very clever (consistently beating me in some games), with an endearing zest for life and a wicked sense of humor. On one hand you don’t notice the changes, because the change from day to day is easy to miss, but then you step back and you look at a picture from a year ago, and whoooooa! That’s amazing!

Nefarious has really extended my life as well. Being in constant pain, and knowing that this pain will get worse every day, to say nothing of my legs failing, and knowing that next my arms will go, and then eventually my organs, it’s very easy to want to give up — and to be honest, I don’t know if I would still be here now if I didn’t want to be here for Nefarious. Knowing how much my father meant and still means to me and how much I learned from him on every aspect of life, I could never take that away from Nefarious, and I want to do everything I can to be there for her as long as I can, and make sure I pass on everything I can, be it skills and knowledge or simply be it love. It makes enduring all the pain worth it when I feel like I’ve given her something that she’ll cherish, or even something that will help build a foundation that will allow her to survive and flourish with a happy and fulfilling life of her own.

Anyway, happy birthday. I’m so proud of my wonderful little girl. She’s the best!

This is the last picture taken at age six.


When I next see her, she will be seven.

And of course the other great joy of my life is Caitlin, and I cannot write this without thanking her as well for the love and support she gives me. I met Caitlin way back in 1994 and got a big crush on her right from the start, and of course we’ve been dear friends and more for much of that time. Caitlin is my beautiful foundation and my safety net, and I feel like she’s able to fill in my decayed body with her strength, making me feel normal again… And even after a decade and a half I still want to know her thoughts on everything and I love talking to her — it doesn’t hurt that she’s very bright, very well read, and we are well-aligned philosophically and politically — and just being around her hand-in-hand.

It means a lot to be with someone who understands me, and to be with someone that I understand. Someone that I feel connected to, and someone that’s been through the highs and the lows with me, and has stuck with me when it felt like the whole world abandoned me, someone that I trust profoundly.

So this entry is for my two favorite girls, about which my life revolves…



I’ve been building up the perfect desktop lately and I really feel like it’s come together lately so I wanted to mention a few of the final toys that pulled it all together.


I have always liked having multiple full sized monitors, and right now I have two, a pair of widescreen (24″ and a 22″) panels, but I just added a tiny little 7″ monitor (800×480 resolution) from ThinkGeek. It’s totally USB, both in terms of the interface (so it doesn’t need a display card) and where it gets its power, and right now I’m using it for desktop gadgets like weather, clock, RSS feeds, and a photo gallery that pulls images from my Facebook friends, but also anticipate it being quite handy for tools and palettes (Photoshop, Maya, etc.), notes, and other small items that will allow me to work fullscreen on one of the big monitors if I can find a place to stash them. I figure I’ll also use this with my laptop as needed.

The other new toy that I got is a SnapScan, a tiny little USB-powered scanner. The reason that I like it is that it’s duplex, meaning that it scans both sides of a piece of paper simultaneously. So now when I get a piece of mail, I put it in (up to ten sheets at a time), and push the scan button. It’s very fast, taking just a few seconds to do a double-sided full colour scan and transfer the two sides to the computer, where they are converted into PDF files and OCR’d, meaning that I can quickly text-search all my documents. Given what a mess of paper I’ve historically had, this is a massive, massive improvement. I also picked up a cross-cut shredder for $25 today, which seemed like a great deal and a great match.

I’ve also really been liking my Wacom drawing tablet, my Flip Ultra HD mini-camcorder, my Beats by Dr. Dre sound-cancelling headphones, and my Kindle DX wireless ebook reader. In the past I’ve had sort of mixed results buying gadgets, but I feel like I’ve made good decisions on this latest batch (and I’ve had most of these long enough to give a review with real perspective — I’m not still in awe of the new-car smell). If anyone has questions about any of these recommendations I’m happy to oblige.

Another day, another blood test

I spent this morning at Sick Kid’s Hospital because they have one of the better genetics departments, so a lot of the morning was spent re-answering questions that I hate thinking about the answers to, trying to maintain my emotional composure, and physical exams that confirm the same problems over and over. The hip girdle muscles and upper leg muscles are continuing to decay, and while electrical tests show that the problem is starting to affect my shoulders as well, I am so far maintaining strength in the upper body. The good news also includes the fact that heart ultrasounds indicate that my heart currently seems unaffected. We’re still waiting on results of genetic tests (for Becker’s) and presumably there will be more after that, and today some bloodwork was done to check on a few long-shot (but treatable, unlike MD) possibilities.


Nice to see them wearing gloves for a change!

If you’re wondering by the way why the blood samples are being taken by syringe (they used the needle/tube/syringe to extract blood, and then transferred it to a normal collection tube) like this rather than being put into the collection tube directly like it’s normally done, this is the default for pediatric blood extraction for some reason, and since I was at a childrens hospital, that’s how they do it there. Anyway, now I’m waiting on results, and then more genetic tests as well as some brain stuff (EEGs) to look into some of the neurological side effects are next on my diagnostic schedule.

To be honest, with there not being a cure for these conditions, let alone any real treatment, I’d as soon not go through this testing at all because it just makes me feel frustrated and sad, but I need to do it for Nefarious’s sake, because the odds are strong that she’s at least a carrier of this condition (she’s probably not affected directly) and she needs to know so that she can one day plan her own family should she want to. For me though I just wish it wasn’t such a constant struggle to have the pain properly treated. I wish that the moralizing bureaucrats who are responsible for “tough on drugs” laws could see just how cruel the effects of their attempts to cut down on the illicit use of painkillers are, and how they do little to stop black market use, but in the end only punish people who are already being punished terribly by nature. It’s just very, very cruel. That’s the best way to describe it. Horribly cruel.

In much more pleasant news, purely by unexpected good luck, I got Caitlin’s birthday present today and I am so thrilled about how awesomely perfect it is, annd I’m just dying to spill the beans but it will stay a secret for a little while! Other than that, I have a relatively relaxed day because a classmate of Nefarious’s is coming over after school today (lured by the pinball machine), so I can chill out while they entertain each other. I’ve been very tired lately so I’m looking forward to that…

A sad and premature goodbye to Josh Rahn

I’ve bumped this to the top so I could add the memorial details.

It is with a very heavy heart that I read tonight (update here) that Josh Rahn, who is standing next to me in the first photo below, was murdered today. That photo was taken three years ago in my daughter’s bedroom right after Howie injected blue ink into both of our eyes. Like one twin being the older brother because of a two minute difference, Josh was actually first because he was braver than I was and volunteered to be the alpha tester, and, as you can see in the photos that were taken at a later date, in time he also went much further than I have (so far). Of course there was much, much more to Josh than his body modification adventures, but in this realm that I knew him best he was very much a parallel traveler and friend that I could relate to, and even though he was cut down far too early, at age twenty one he had already gone place and explored experiences that most people never reach in a lifetime.

Update: Not that it makes a bit of difference to anyone’s feeling of loss, but this was not a “self-defense” killing as some have suggested — Josh was outnumbered and just trying to get away, and was fatally stabbed in the back. Making the event even more tragic, he leaves behind his best friend Tanky who was also the mother of their young son, Ogden. Memorial services will be held at 4 PM on April 22nd (Thursday) at Burkey and Driscoll Funeral Home.

Howie, Pauly Unstoppable, Josh Rahn, Me

Josh’s blue eyes in their latter stages

Games, electromechanical and otherwise

We got an awesome new toy today — Dave went to the gaming auction and picked up this 1985 Tag Team Pinball machine for a few hundred dollars (bringing back memories of when we all lived just a few blocks from here in the 90s and had two machines in the kitchen that got a ton of use). They forgot to give him the front panel key though, so we’re actually having to put real quarters into it for now… I wonder how much money will be in it by the time the key arrives? I’m guessing a lot, since everyone seems to be enjoying it. Nefarious got a phone call from one of her school friends and mentioned it to her, so her friend is now quite excited (“coooool!!”) to come and play after school in a couple days.




Yes, we were so excited to get playing that we didn’t even take the time to put the legs on before starting to pump quarters into it.

In our continuing quest to improve the games we play, we’ve also added a new play style to Gin Rummy, which we play while eating a surprising quantity of mandarins. When you play your cards, they can be laid in a grid, with the suits being the columns and the runs being the rows (or the other way around). For a run/set to count, it of course has to have three cards minimum, as in standard Rummy, but this way means that you can have cards be counted more than once for scoring (as in Quirkle, which is the game that gave me the idea). So for example, in the photo below, I have a 6-6-6 set, a 5-5-5 set, and a 5-6-7 of hearts run, and a 4-5-6 of diamonds run, as well as a set of Jacks and a 2-3-4 of clubs run, and thus for the purposes of scoring the five of diamonds, the five of hearts, the six of diamonds, and the six of hearts are all counted twice. Especially once you start taking into account adding onto your opponent’s played cards, it makes the strategy and gameplay a little more advanced.


Tomorrow Nefarious is going to a friend’s mini-golf birthday party — we got them a “make your own glow in the dark slime” kids chemistry set, which I hope will be a hit — and as the chauffeur I’m looking forward to the free time. Because the place is a little out of the way, my plan is to bring along my Kindle and find somewhere to read, as I’ve downloaded a couple of books that feel so far like they’re going to be great reads. I’m really happy I got a Kindle, and all things considered, I prefer reading on the Kindle to paper books, which is really quite a remarkable statement for a bibliophile like me.

Other than that, I stayed up too late last night watching almost all the episodes of Embarrassing Illnesses, which on one hand is the same can’t-look-away trainwreck as the bazillion abscess and zit-popping videos on Youtube, but on the other hand is really valuable, really helpful information documenting the awkward experiences that we all have but are all afraid to talk about. There were some very brave people in the videos and I hope they know what an important service they’re providing.