Monthly Archives: June 2010

Putting the “Crazy” back in “Crazy Eights”

I’ve really had a remarkable amount of energy today and all things considered, I feel good, good enough not just for real life but for online life as well. Fingers crossed that it continues, but either way it’s a welcome and enjoyed change. I had some emails from friends who were concerned that I’d given up on life and I just wanted to say that when I cut my blogging to zero during the difficult periods, it just means that blogging is low on my priority list, not life altogether. Please don’t worry. Although the clock is ticking faster than I would like — and it is for all of us I suppose — I still have a joy filled life.

And today some of that joy came from having a set of plastic playing cards.


Something that makes me worry

Let me write this at the very start of the day while I have some energy (although I must avoid false sympathy and say that after a very dark, difficult, and painful stretch, that this has been a far better week than the last few and I’m doing my best to enjoy it and make the most of it while it lasts).

When Nefarious was born, two things were going on in the medical world that I feel are relevant to what I’m going to admit. First, it was the height of the SARS scare, which, at least in rural Belleville, seemed like a huge over-reaction and fear-mongering blow-up. Second, it was when all the worries about vaccines potentially causing more problems than they solved were starting to be made noise about by various fringe figures that I was sympathetic to. As a result, I had a great deal of distrust of the vaccination system and for the first part of Nefarious’s life she was not vaccinated. Over time, a combination of feeling uncomfortable signing “religious exemption” forms and starting to understand the science (and seeing the anti-vax “science” being thoroughly debunked) left me with the understanding that I’d made a terrible — and embarrassing — anti-science mistake that needed correcting.

Unfortunately, even with the antivax science so debunked (and shown to be full-on evil) that all that’s left is a mix of lies and religion, I still have many dear friends who hold an anti-vaccine stance and are by their caring (and I think it’s important to recognize that people are antivax because they are trying to be the best parents they can be) but misinformed actions endangering their own children as well as other children around them. It’s hard to bring it up because people get really mad, to the point of ending friendships, when you question their parenting choices, but I think on this subject it’s worth the risk.

I’m not going to personally break down all the reasons why the antivax position is about as reasonable as creationism, flat-earth science, moon landing hoax claims, and other anti-science lunacy that stems from a weird mix of ignorance, conspiracy theories about “big pharma”, and religion, because there are a great deal of good resources out there that do it better than I could. For starters, Health Canada has a good page debunking various antivax arguments, and if you want to get more indepth — and really understand how the antivax movement is starting to willfully murder children, and the gargantuan health risk it represents — then you must keep an eye on the “Bad Astronomy” blog, which is a real beacon of light and works hard to make sure that science and reason is the voice that drives us, rather than blind fear of the night that we should have left behind in the Dark Ages. Anyway, their antivax posts are a must-read.

I’ve added both of these links to my sidebar. Like I said, seven years ago I started out with worries about vaccines, worries that were strong enough to avoid them at first. So I get how one could start there, but these are worries that I calmed with a little research. I came to understood the harm that I almost did my daughter and felt terrible about it, and, if you are in the same position I was then, please please please just read over the links above. That’s all I beg of you. Look at the sources for the various arguments and their qualifications to make the claims they’re making, make a real risk assessment (because even if the antivax fear-mongering about autism/etc wasn’t an outright lie, from a statistical point of view, you’re still monstrously safer with vaccines), and let the reasoning, conscious, and intelligent part of your mind make the decision, rather than your gut. This is pretty much the only subject on which I feel it’s worth butting ones nose into other people’s parenting, and I do feel bad doing that when I tell a friend I think they need to reconsider their stance, but I do feel that it’s important enough to take the risk.

Especially if you’re going to let your daughter in the lake…






Briefly Checking In

I just wanted to briefly post and say that I’m alive and doing alright all things considered.

More than that though…

A photo from 2004, right before he left for extended Southernly adventure and a new home, and less than a year before I’d do the same. He continues to inspire me. Amusingly, I would never have believed it when I was a child — quite likely I’d have told you the opposite some days — but looking back on it now, I can’t imagine a better father and I can’t imagine a better childhood.


I wanted to thank a happy father’s day to my father. Growing up with him as my father gives me a great deal of strength and happiness and deep desire to keep going because of my pleasure in doing my best to repeat and expand upon the experiences that I was given and knowledge and wisdom and training that has been passed on like this for thousands of years before these three generations that I’m the middle of.

Today we installed an upcoming symphony of flood damage “indoor pool”. It will take a great deal of self control not to jump off the swing set and canonball into the pool.


I have also been reading The Half-Blood Prince to Nefarious, an important part of our day that’s rarely missed — thanks (a thanks devoid of sarcasm), JK, for seven thick books, one approaching a thousand pages. If you’re wondering how long it takes to read this out loud — out loud with interruptions of all sorts, snacks, admonitions to behave, washroom breaks, begging for candy, squirming, and begging for more when the clock gets late — then you’re in luck because that’s something I can tell you. It takes about forty-three hours. For you, fast forward.

This (the full length recording) is part of an ongoing project to create an archive of memories and artifacts that will help Nefarious remember her childhood and her life with me — I remember almost nothing of my childhood and as I see Nefarious living as a youth, I have so many questions about my past that only I can answer… and I can’t. I also hope that maybe it will be nice for theoretically-potential grandchildren.

Finally, an uplifting hospital visit

Hello to Kiran, daughter of Saira and Michael.

(And this is not even the only new baby I met today, hello Violet, of Shane and Jovanka as well)


Long time no read

First the good news. On Sunday I went to my best friend Saira’s baby shower — in theory she had plenty of time to wait still and I think they’d just (almost) finished their baby renovations days before. But theory with babies is just that and the next day she said to Michael, “I think we need to go to the hospital”, and not long after a little four and a half pound healthy baby girl was born that they’ve named Kiran.

The bad part of my entry is not unexpected (other than, as with the baby, in timing), and it’s why I have to apologize for not posting very much lately, and unfortunately I think that may well be a trend that stays that way. I’ve hardly been able to do anything for the past month, being bedridden for the majority of the days, just barely able to drag myself up and “activate” for the times I need to be there for Nefarious. I think it’s been particularly difficult because the pain and weakness in the muscles surrounding and including my shoulders becomes more pronounced as the dystrophy spreads there (something I’d been warned was already showing up on the tests, so I knew it would happen some time). Having the problems in my arms as well as my legs make everything dramatically harder, not just because you can’t offload strength tasks from your legs to your arms, but because it creates a whole-body malaise that’s hard to shake, to say nothing of pretty much everything being so painful, tiring, and physically difficult that after only a few minutes of work or activity one feels very overwhelmed with pain and nausea.

Getting back to the baby shower, even though I didn’t feel up to going, I really wanted to be there, and I did manage to make it. However, about ten minutes after Caitlin, Nefarious, and I arrived, I started feeling more and more horrible, and told Caitlin I had to leave and asked her if she could find me some plastic bags in case I was going to be sick in the truck. I made a hasty escape, but not hasty enough, and stumbled only to the door of the truck before I started projectile vomiting — something that’s rather embarrassing to be doing on a pleasant Sunday afternoon on a quiet residential street (thankfully it rained not long after). It took me a few minutes to gather myself before I could crawl into the truck and slink out of there, stopping once on the 90 second drive home because I didn’t feel safe. I’d thrown up my only meal of the last week, half a crepe. I lay down and barely moved for the rest of the day.

With all of this having gotten worse and worse over the past month, I could have sworn I was moving into my final days, or at least wished that I was so that the pain would end. Other than the guilt of leaving my responsibilities, I have no fear of dying, and am very aware that it’s the part that leads up to dying that’s the part that sucks. I imagine that dying is the easy part and don’t give it much thought. But anyway, I spent a week not even being able to hold down water if I drank it too quickly, and completely unable to eat, with even pills being difficult. The good news though is that yesterday I managed to eat a quarter of a bowl of rice and vegetables and felt pretty good for it, and I’ve been trying to drink fruit smoothies since I can’t hold down anything else. I still feel horrible but not as horrible as I have been, so I think I’m on an upward curve again. I feel like I’ll be able to eat a little tonight, and I’m drinking a strawberry/banana smoothie right now to get some nutrients and energy.

Nonetheless, I know that this is just a temporary lull and the odds of things getting better in any big picture sense are extremely low. With less and less strength available to me, it’s quite likely that I’ll be posting sporadically at best. Don’t worry, it’s because I’m investing my energy in living as well as I can, rather than investing it in the internet. Don’t get the wrong impression — my life is still a happy one, all things considered, and were it to end tomorrow I would still feel blessed.

I am however getting very sick of what feels like lying around here waiting around to die, and within the constraints of my responsibilities, I feel like there are things I can still do to make the most of my time, and more importantly, maybe inject some life into me that the medical industry seems unable to find. Before my legs gave out I wanted to walk across the country (something that a Google search tells me a remarkable number of people are doing). I do still love driving though — for example when I picked up Caitlin’s Mustang from the shop today it was very freeing being able to move easily and feel strong by proxy through the car — and I’d love to rent an RV for the summer. Or longer. Or moving to a beach in Costa Rica. Or something… anything other than waiting around to die.

Finally, I wanted to apologize to folks for not replying to my emails or comments or messages as much as is reasonable. Every day I get really wonderful really heartfelt and really touching messages from people from both the distant past and the present, and I just wanted to say that even if I don’t reply I do read all these emails and I can’t begin to tell you how much they mean to me. Thanks everyone.