So I’m giving this a try. I am posting to my blog remotely from my Android phone. Pretty damned cool, although also pretty tedious. No comparison to a real computer.
Hmm…. I noticed that the flickr image cluster I posted in the last entry, which runs horizontally, actually shows up vertically in the RSS feed… at least for google reader. I have no idea why this is. Anyway, for those of you enjoying the site on some sort of aggregator, seems there’s a little weirdness.
heh… incentive to come enjoy the real thing. 
By the way, life’s getting weird. If I disappear for a day or two, it isn’t at all unusual at this point. Hrm.
Thought I’d post this little entry on charity here as well as send out e-mail in the hope of reaching the widest possible audience, but also just ‘coz I have some thoughts about it all, beyond just the idea of hoping people give. So here’s my thoughts on the matter, before I give you the spiel.
This is the first time I’ve been involved in anything like fund raising at all. I haven’t traditionally gone in for fundraising things, mostly because of how I feel when people come to me for fundraising efforts. However, being a part of this to this point has given me pause to think about it more than I ever have.
My initial bias is twofold, I suppose. The first is that I get all kinds of requests for money, and I am loathe to give up any of what I earn. If there’s one thing that my upbringing taught me, it was to be stingy. I don’t know if my parents did this intentionally, or if it was merely a by-product of their own lives. They lived through desperate times of poverty before immigrating to Canada and finally making life work for them. They saved every penny they could, and the idea of simply giving it away was probably madness. Before I finished school, I had a four year period where I was living below the poverty line, eating peanut butter for dinner and no way was I giving anything I had away. No matter how worthy the cause, one’s own family and self has always been cause #1 in my little world. Also, there comes a time where even the most generous person needs to choose their battles. Traditionally, the church wanted you to tithe 10% of your income to them. Then there’s all the causes that come knocking too numerous to list from cancer to sick kids to war amps to disaster relief and on and on. If I were to give to everyone who wanted a little, I really would be in dire straits.
The other thing is my cynicism, which tends to creep in most places, and here is no exception. I worry about what the money really does, and I also wonder what good it all is in the grand scheme anyway. The fuzzy logic has always been, the people or animals or environment or whatever are already in sheep dip. They’re already dead or doomed, they’re already finished, and throwing gobs of money at them isn’t going to make a difference. Not really. Everyone dies eventually anyway. My 20 bucks won’t make a difference.
You’d think this sort of thinking would have been knocked out of me when I went through the whole heart business. I know more intimately than most the need for research and how far that cash has taken us in just a single lifetime. I spoke to an older man who told me his surgery experience as a child was extremely different–when heart surgery was done, they’d do everything from stick tubes up a person’s main arteries to perform simple scans to install devices that would be so easily rejected that they’d need to take medication that would make them sick, while it kept them alive, for the rest of their lives–assuming they survived the process, which odds-wise was less than great. My experience, by contrast, was an extremely new and difficult open-heart procedure which in spite of the situation resulted in a completely healthy heart with no side effects whatever and all I need to do is take an 81mg ASA tablet every day. My recovery time was all of six weeks. The other day I read a news story about how doctors were able to perform heart surgery in utero for god’s sake, so the baby could be carried to full term and have a heart and constitution strong enough to survive the birth. To say we’ve come a long way is quite an understatement. And I know that the cash the heart people raise has had no small part in that.
Yet while I realize that it’s a good thing to do so, I don’t give a lot. Traditionally, before this, I have given to the Toronto Hospital Cardiac centre because I feel a real sense of debt to them, for obvious reasons. Other causes were pretty hit and miss.
And then came Suzanne’s dad’s situation. In what appears to be a completely random situation of upfuck, he somehow came down with ALS. No family history, nothing wrong with the guy before. He got exercise, he sang in a choir, he worked like everyone else. Normal beyond belief, and then she-bang. The thought of this isn’t something that plays with me much beyond the sheer randomness of it. I mean, something’s going to get everyone, this is just a particularly weird one. But the way the disease plays out is really, really awful. Slowly, irrevocably, absolutely, it takes more and more of one’s control. It starts as an annoyance, by making doing things one normally does like lifting or walking more difficult. Then one stops being able to do those things. Then one stops being able to do ever more simple things. Then eventually one can’t care for oneself anymore. Then one stops being able to even move on one’s own–not so much as a finger twitch. Then one stops being able to breathe on one’s own. One loses the power of speech. And eventually, the person is left to lie in a bed, in whatever position the caregivers place him, with tubes and machines to maintain bodily functions, and think.
Just, think.
That is all that’s left for the balance of life. It never gets any better. This disease is so very merciless because it takes so damned long to run its inevitable course, and all the while the person gets to experience it with all his mental faculties completely intact. Quite frankly, I don’t think that hell could be much worse. A soul trapped in a container, able to feel everything and think, and that’s all. It just blows my mind. So much so that I try not to think of it.
I’m not saying any of that as a motive to incite guilt in my readership to make money flow. The frustrating thing is that I am right in my cynicism in many ways. No amount of money or care or research is going to make Suzanne’s dad any better. There’s only one outcome, and it doesn’t matter a whit what anyone does at this point.
I honestly didn’t expect any cash. Beyond the obvious, I got into this because I wanted to figure a way to deal with frustration, and because money won’t do anything, it’s down to time. Suzanne and her family spend so very much time at the hospital, and I think I get why. Recently, I came across this quote, attributed to someone by the name of Shep Lampkin:
“I can give you the shirt off my back…I can get another one. I can give you the money in my pocket…I can get some more. Yet when I give you my time, you know how much I really love you…because, you see, it’s the only thing I can’t get more of.”
And I suppose that’s it. I really don’t feel at all ‘in place’ at the hospital. From a care perspective, I can’t do a thing there, and I fear that in spite of our knowing each other for a decade now, I don’t have much to say to Suz’s dad. This feels to me like a ‘Suz-family’ situation, and in spite of the fact that I know I’d be welcome to be a bigger part, I feel that my part is time. I give up time I could be with Suz, time I could have use of the car, time I could be doing other things, and I do it (admittedly sometimes with more bitching than I should) because at the end of the day, I love and care for Suzanne and her family. This is my way to give–the only one that feels right for me.
This walk for ALS thing was a surprize. Initially, I thought it was another thing where I could simply give time. Turns out it’s more. It’s time, sure, but it’s also a feeling that I am actually doing something active with my time rather than just passively giving it. And, amazingly, we’ve raised an assload of money. Our current combined total is hanging at over 2000 dollars. That blows my mind. That kind of money does do something. I’ve seen where the ALS people provide patient-specific chairs and beds, and organize events that people with the disease can do. I’ve seen the care offered, and it’s good. And although I haven’t seen it for ALS, I know through the whole heart thing that research goes a hell of a long way, really fast, to help. I kinda want to know that somewhere in my lifetime, research will at least figure out a cause if not a cure for ALS, as I wouldn’t wish this disease on anyone.
When I started with the walk thing it was about time, and still is. I never expected to raise a cent. But I have had people hand over cash to me that I never expected, and it’s made me feel, if only for a moment, that it does somehow make a difference. It’s melted the cynical heart of Martin a little bit. Very few things surprize me anymore. That melting really is a miracle.
Anyway, I know I’m still a work in progress with regard to this. I’m still a stingy cynic. But I think I feel now that I haven’t been entirely right. The money does help, and the time is worthwhile. Looking toward the future, efforts like this might make the world a better place than it was when we came in, and I guess that’s one of the best things a human life can hope for. It makes me feel optimistically hopeful. That is one heck of an alien feeling for me; but it’s one I hoped to find.
So, here’s the spiel that I give to everyone generally:
PSA – Fundraising-Walk For ALS (Lou Gehrig’s Disease)
This year, my family and I are joining the ALS Fundraising Community in their annual 5 KM Walk For ALS at RIM Park on June 13th. Along with raising much needed awareness about the disease, the funds raised through this walk help with research for ALS, and aid the Provincial ALS Societies in providing care for people living with ALS.
The reason I got into this is because my father-in-law contracted the disease a little over a year ago, and I have watched as he’s gone through dealing with all of the things it does to a person. Initially, it was simply weariness, but the whole thing got worse when he went into respiratory arrest last July. Since then, this insidious condition has caused him to lose the ability to do almost everything for himself, including breathe. What makes the disease particularly merciless is that as it robs a person of their ability to do everything from moving to speaking, it leaves the mind fully intact. In spite of this, my father-in-law has still managed to live with his disease with incredible courage and dignity.
If you feel that you are able to support myself and my family in this worthy endeavour, I invite you to check out the following pages:
To support my walk, go here and click Help Raise The Bar.
To learn more about ALS (Also known as Lou Gehrig’s Disease), go here.
If you do feel like you want to help out, in any amount, go for it. I can tell you, it’s a good thing to do if you’re looking for good things to do, and many drops will eventually make a river. 
Hey all.
Well, after a long-ish haitus, I decided to go live again. It’s a weird thing. I have thought about loads of things, and I’ve often wanted to share my thoughts for whatever they’re worth with the world at large. I thought about all sorts of publicly available options: Notes on Facebook, LiveJournal, but there’s always something limiting about the options that brings me back to the lonely non-community that is a self-run blog. Still, it seems this is the best way for me.
So, expect that whatever I choose to put ‘out there’ will be done here. I’ve upgraded to the latest and greatest install of WordPress, which does indeed look like it’s taken a leap or two since the last time out.
I’ve decided to take down everything that was here before… I expect that’s no great loss. If there’s something that you remember that you’d like to see again, let me know.