ALS
December 7, 2004 2:29 AM   Subscribe

Think you've got a problem? Then discover how you should pick your nose with a fish fork. Some guys really don't get all the luck. Not when they bleed to death from eating blueberries.
posted by Cancergiggles (23 comments total)
 
what
posted by kavasa at 2:53 AM on December 7, 2004


Was this post generated by a bot?
posted by john-paul at 3:04 AM on December 7, 2004


Sometimes when I write things in freeflowing style it makes me forget that I need to use linebreaks and enter and return keys all over the place or else it becomes tough to read. Which is a problem when I am writing a blog because when your text is tough to read it makes it tough to get people to read it which really sucks; especially it really sucks when I write in a tough to read manner and then I apply a harder to read font which isn't so good on my monitor but does make my stuff I wrote stylish and nice and well, in general, pretty cool looking. The only thing is I like to highlight things in red and reverse text which is nice looking but sort of distracts the reader. I wish I had a turkey sandwich right now. You know. With the gravy and the sauce and the mmmm, Swiss Chalet. You ever been to Swiss Chalet? It's like, all tasty and chickeny menu is exciting. A lot like St. Hubert in Quebec, which people from Quebec say is nicer than Swiss Chalet, although having been to one I must say I disagree. Did you know that in Quebec it gets really cold? Yeah, the weather up here is kind of tough, but that's the way it goes. My car tends to slide around a lot in this kind of weather. Which is why I am too cheap to put good tires on it. Why? Well, I'm not going to explain that, but I will put this sentence in bold because that makes it look all funky and cool and stuff. Oh yeah. I love metafilter! WOOHOO! CHICKEN AND RUBBER TIRES FOR ALL!
posted by shepd at 3:06 AM on December 7, 2004


Not sure why this offends anyone but as it's my first post, I'm more than happy to listen to what I did wrong. Surely everyone starts off as a virgin?
posted by Cancergiggles at 3:19 AM on December 7, 2004


Guess what shepd - I bet you might have a problem if you could hardly talk and speech recognition was your only input method because you were just about incapable of any independent movement.
At least it is heart warming to be criticized by someone who we can learn from. Or it would be if your site and email weren't "temporarily down".
posted by Cancergiggles at 3:31 AM on December 7, 2004


Ouch, Shepd. Cancergiggles: It's not clear from the post that the blogs linked to are those of ALS sufferers (yes, it's clear if you take the time to look through the blogs, but without context, most people won't. I skimmed them and didn't notice anything particularly significant until I saw your comment).
posted by Tlogmer at 3:48 AM on December 7, 2004


(Incidentally, Cancergiggles' blog is pretty good. (New posts are at the top of the left column.))
posted by Tlogmer at 3:51 AM on December 7, 2004


alsgiggles?
posted by three blind mice at 3:54 AM on December 7, 2004


Point well taken. Like I said I'm a newbie and thought that, like you, most people wouldn't make fatuous comments unless that they had taken the time to find out what what they were being unpleasant about. I live and learn.
posted by Cancergiggles at 3:54 AM on December 7, 2004


Cancergiggles, it just looks like you linked to your friend's blog, there's no explanation of what makes the site of interest. To be brutally honest, I don't think there is anything that makes the site that interesting, even accounting for the difficulties the blooger may face.
posted by biffa at 3:55 AM on December 7, 2004


oops: blogger.
posted by biffa at 3:57 AM on December 7, 2004


Cancergiggles:

(A) I have seen disabled people at work and been amazed at their accomplishments (*). One thing I have noted is that the best of them excel even the best effort I could put forward.

Just because your input method is tough does not excuse you from making a readable and exciting website rather than a complete mess, although it can excuse you from adding lots of unnecessary "flare", like pictures, etc. I know this because, as I mentioned, I have seen severely disabled people who excel at what they are doing. This, frankly, while it is always great to see people trying, it not "best of the web", even if it does make a heartwarming tale.

(B) The fact that our website is presently non-functional has very little if in fact nothing at all to do with this person's website being up and having poor content. To suggest that someone who presently does not do something lacks the ability to express comments about someone else's work is disingenous, at best. Otherwise, we would all need to be musicians to actually understand what music we think is good and what music we think is poor.

(*) - I attended the 1996 Atlanta special olympics to watch a cousin from the UK compete. It was quite exciting and I would show my support at the next olympics nearby if it weren't for the fact I feel more people would think I'm there to gape instead of cheer on. Quite frankly, considering the present state of "regular" olympics, the special olympics are composed of far truer athletes.


Now that I've got the snark out of the way, let me suggest what could have improved posting that site:

#1. Mention, in a kind way, that the person who designed it is, in some way, disabled. I, myself, glanced over that site and had no idea the person was disabled, rather than a poor writer. Although their disability does not excuse a tough to read webpage, it does mitigate some of their responsibility. It also prevents unfortunate exchanges and will mean readers will spend more time looking for the good in a site rather than brushing it off, like I did. Which results in nicer comments. :-)

#2. I clicked the link to what I believe is your blog. That is well laid out and pleasing to read. It makes sense. Nice, titled paragraphs that clearly let me know exactly what the hell I'm reading and why. I now understand the writer of the post in your FPP is disabled, but I don't think that stops him from putting titles on things.

#3. Try to link to more than just that blog. Make your post seem like more than a link to one guy's life. Make it say "Hello, this is how everyone should live their life -- these people have exciting lives and you should know about them". As your post presently stands it makes me feel a bit more sad than happy for this guy, and that's unfortuante, because I'm sure he's an upstanding citizen.

I hope you take those suggestions kindly, I don't intend to insult you or anything at all like that. I want nothing more for us to both feel improved personally after this. :-)

I do also hope the writer of that website takes these suggestions to heart and does not take them as a personal insult. With an improved style he can show people just how capable he is despite a disability.

I've re-read the site one more time and I still can't make much sense out of it. I'm sorry, but it just doesn't make sense (tm). I tried. I really did. But it just feels VERY hard to read. VERY VERY hard to read. Even if he did pour his heart and soul into it, I still just can't make heads or tails of it. And, I can see, other members can't either, but they're less direct than I.

Lastly, in defence of my comment, it was an attempt at humour, and not a personal attack on the person. In general, it reads like a lot of other blogs, in that it feels like reading someone's diary, rather than reading something they want you to read. It just feels sorta creepy to read such personal details on someone's life in a diary style -- it's as if you're reading something that shouldn't be there. So I tried to capitalize on that style and give people a bit of a rise. I see now it was perhaps in bad taste. Sorry.
posted by shepd at 4:01 AM on December 7, 2004


An interesting post on a segment of the blogging community I hadn't given much thought to which I'm sure was your point. Like Tlogmer it wasn't clear until a reading the blog what the angle of your sharing was. Also, here is a quote about why it is important. And of course the Crippled Monkey Blog has things to say.

so maybe by bolstering your post with other like links you could have made a better front page post. welcome, regardless.
posted by geekyguy at 4:02 AM on December 7, 2004


Sorry biffa. Maybe because I follow this all the time I have omitted to explain clearly enough and to link to many past articles which are maybe more interesting than the current few days. I learn more.
posted by Cancergiggles at 4:03 AM on December 7, 2004


shepd. Thanks for your explanation and suggestions - all of which I take on board. I'm the first to admit to occasionally attempting humour and inserting my foot into my mouth.
posted by Cancergiggles at 4:11 AM on December 7, 2004


Hey, Cancergiggles, thanks for calling me out on my post. It's been a while since I've really had to apologize for something, and I often have such a lack of heart, even my own mother has to remind me not to be so cold. By being scolded it brings me a little more in line with society's expectations of me. :-D
posted by shepd at 4:17 AM on December 7, 2004


Shepd. Being a "nearly dead" myself sometimes makes me a bit grouchy on other peoples behalf. It has however made my day to come across someone who can be so gracious. Many thanks.
posted by Cancergiggles at 4:22 AM on December 7, 2004


Lastly, in defence of my comment, it was an attempt at humour, and not a personal attack on the person.

well shepd, i laughed even though i thought it was a little cruel. your first comment looked like it was written by faulkner on crack.

and your subsequent comments were way too serious.

I want nothing more for us to both feel improved personally after this. :-)

cancergiggles (who appears to have no shortage of humor) wrote in his blog that the downside of being honest with people about his cancer is that they would be honest with him.

when my best friend was dying from the same disease, he was also brutally honest. in view of that i tried very hard not to be. i tried to be exactly the same with him as i was before he was diagnosed. he lived 24/7 with the disease, but when i spent time with him we never mentioned it, never talked about his treatment, or his future. i figured he did that enough with everyone else. when i visited we shared a smoke and talked and laughed about the same shit we always did and i pulled no punches making fun of him for not being able to finish his half of the bottle, or his happy meal - just as i would have done before - the only difference was that his cancer gave me the opportunity to make fun of him instead of him making fun of me.

giving him a little reprieve into normalcy was just about all i could do for him.

i guess what i'm saying is that it seems alright to me to not give someone a pass because of a disease. your first comment was a funny parody of the link that cancergiggles posted and you ended up feeling bad and apologizing for slagging the guy's blog and trying to be funny which is really nothing to apologize for.

and if cancergiggles wasn't so grouchy, he might have seen the humor in it too and maybe this thread would have longer legs.

c'mon man, chin up. take your beating like everyone else does.

and hang in there, brother. you're a superman.
posted by three blind mice at 5:12 AM on December 7, 2004


Like I said I'm a newbie and thought that, like you, most people wouldn't make fatuous comments unless that they had taken the time to find out what what they were being unpleasant about.

Well, no. I realize you've already taken a more polite and judicious tone than this, but in case other newbies are reading along, please understand this: If you don't construct your FPP to get across what you think is special about the link, and people go check it out (without spending exhaustive amounts of time searching through it) and find nothing special, then a) you didn't succeed in getting that across, or b) there really is nothing special, or c) possibly both. I think it may be "c" in this case, but I'm one of the ones who just read a couple paragraphs on each of the two links and said "WTF?"

The other thing is, if it's your first FPP, sit back and read the feedback for a while before jumping back in and arguing the merits of it. You're not going to change many minds by moderating your own threads, and you will brand yourself as someone with a paper-thin skin. Again, you've acquitted yourself, Cancergiggles, but I'm starting to see a lot of this behavior from the bunch who know MeFi inside and out as readers, but who are still getting used to being posters.
posted by soyjoy at 7:29 AM on December 7, 2004


Didn't anyone else see the "Just say no to ALS" banner at the top of the page? Wasn't that a big clue? That, and the tone of cancergiggles' posting, made me realize pretty quickly what was going on. Not trying to toot my own horn here, but I'm suprised so many people seemed to have to difficulty figuring out what the deal was with the linked blog.

That said - nah, sorry, the content wasn't that great, and the posting could have been more compelling, but I was still mildly surprised by the "I don't get it!" tone of the first few postings here.

Oh well. It's going to be a while before I post my first FPP!
posted by kcds at 10:27 AM on December 7, 2004


It didn't jump out at me.
posted by Turtles all the way down at 10:30 AM on December 7, 2004


Well I tend to ignore banners, but have never heard of ALS anyway, even now I know what it stands for I have little idea of what it is and am pretty certain I've not heard the term before.
posted by biffa at 1:25 PM on December 7, 2004


Ditto, biffa - plus, again, it's not up to the rest of us to figure out and share the key to what makes something interesting, or in this case, what makes the poster think it's interesting. That part is up to the person posting the link.
posted by soyjoy at 2:04 PM on December 7, 2004


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