Monthly Archives: October 2011

Le Gimp, C’est Moi!

As I indicated in my last post, I’m inaugurating my new Krip Kam© series of videos on YouTube beginning this week. The name ‘Krip Kam’ is not intended to minimize or trivialize the nature of my disability, it’s meant as a handy tag to clearly distinguish the videos I’m making from others out there and make them readily searchable for interested viewers.

The name is also a reminder to myself not to take things too seriously. There’s no getting away from the fact that this is a deadly serious business for me, but being able to have some fun in my life is every bit as important as keeping my responsibilities met…life is not some grim utilitarian exercise, it’s meant to be lived, an idea I intend to celebrate every day.

If a picture is worth a thousand words, a video has to be worth at least ten. I can talk about the difficulties and hazards of transferring to and from my power wheelchair all day, but I think a video like this really demonstrates the subject far better than words alone can.

I hope you find it instructive, with time and experience I think this aspect of documenting my life and doings will be rewarding. I’m already researching ways to mount my camera on my chair, as well as other forms of videography that will enable me to share my perspective with the world even more successfully.

My special thanks to Marc and his Wheelchair Kamikaze blog for providing an inspiring example of a disabled person living life as fully and rewardingly as possible.

Without further ado, I present Krip Kam© Video #1 for your delectation. If this doesn’t illustrate the importance of this blog’s goal, I don’t know what will!

Planning And TCB

I haven’t written for a few days, not so much because I’m a lazy slacker, but composing the first couple of articles for the American Daily Herald plus a longish blog piece really took it out of me. For me, TCB…taking care of business…is a lot more involved than it used to be!

It’s annoying and at times I feel rather pathetic, but my energy level is so low that when I occasionally overdo it, my body just pulls the plug when I’d normally be awake…my eyes droop and wobble no matter what I do to try to keep alert, and I just have to go with it.

I’m up in the evenings, but when I’m depleted I can only make it a few hours before I hit the wall. The past few days I’ve napped up to six hours at a time reclined in my power chair…that’s on top of six to nine hours of ‘normal’ sleep in my bed. Jeez, I used to be almost hyper, but the foul MS is an energy vampire (among its many nasty activities) and it’s been years since I had that kind of energy. Not much can overcome it, when I tried prescription amphetamines a couple of years ago I might as well have taken some sugar pills for all the good they did.

I’ve been busy elsewhere too. While writing will always be my preferred way to communicate, I’ve suspected for a while that folks have a hard time really understanding and internalizing the sort of limitations multiple sclerosis has foisted on me. Description alone, no matter how comprehensive,  just can’t convey how difficult many tasks are for me. Then there’s the credibility issue…more than one person has suggested that this blog and its fundraising goal are some kind of devious scam. Too, sometimes I get the feeling that a number of folks who don’t know me well consider this blog to be something of a whinefest, a place for me to simply complain about my affliction in hopes of garnering sympathy so I can raise enough dough for a desired luxury…not a truly needed addition.

Well, I can fix that misapprehension.

I got my photographic gear together…camera, tripods, and such…in preparation, and dug out the software I’ve had lying around for video editing. Currently I’m reviewing the tutorials for the program so I can put together movies suitable for uploading to YouTube using video clips, stills, text and music. With music especially I’m trying to make sure that any tunes used are public domain so viewers won’t find it blocked by the IT nannies at YouTube; I want my message visible to all.

I’ve done video work before so I’m sure that with a bit of practice it’ll come back to me. This way, I can create a playlist of movies dedicated to demonstrating my situation that while not exactly fun to watch, won’t be utterly dry and dismal. They’ll be handy not only for demonstrating my physical limitations but for adding a new dimension in my ability to document my life a little bit better here.

That’s just the start, I’m devising a camera mount for my wheelchair much as Marc, the Wheelchair Kamikaze, uses to record media for his blog. I’m using my trusty old Olympus C770 for now, but hopefully in the future I can acquire one of the spiffy small GoPro action cameras to better do the job. A very cool plus to having a GoPro camera available is that once my Element’s modified I can take it with me everywhere…and once I’m able to fly my models again, the camera’s small enough to fit on or even in a plane so I can record some aerial videos. I’m psyched.

Madames et monsieurs, it gives me great pleasure to announce the introduction of my all new KripKam® series of videos, coming soon exclusively for this blog!

I know, I know, it’s a silly name for a serious project, but you gotta have a sense of humor sometimes. Speaking of humor, here’s a scene from Clerks 2, a movie I finally got around to seeing and now I’m wish I’d watched years earlier. I love how Kevin Smith uses Randall to demonstrate a decidedly unpleasant attitude toward the disabled that some people actually do adopt sometimes…happily a minority of the population, I like to believe.

Beyond that though, it’s so over-the-top that I don’t think it could be mistaken for anything but biting black humor. Be advised, this isn’t the sort of dialogue you’re likely to hear in a conventional screwball comedy!

An Anchor Would Be Nice

It’s been an interesting couple of weeks, and I’m encouraged by the way this writing I’ve done lately has been evolving, certainly beyond my expectations.

Last week I submitted and published my first article over at the American Daily Herald, and another topic fell into my lap at just about the same time, one I didn’t feel right ignoring. Happily, this article was accepted as well, and it’s been published and is available now if you’d care to have a look. Processing all the data while researching it was draining, but I found myself genuinely enjoying the act of writing a more disciplined piece as much as I do putting together a blog entry. How cool.

I find myself wondering just how far I can go writing opinion and commentary on a regular basis. Our world, especially over the past few years is what our military friends would call a ‘target rich environment,’ to be sure, I just wonder how my fatigue and diminished multitasking skills will mesh with the task. We shall see.

It doesn’t help that the gorgeous fall weather is distracting me. I catch myself spending a lot of time thinking about the beauty of the season and its effect on me. Every year I learn a bit more about autumn, not from an academic point of view, but in the visceral feelings I notice most at this time of year. I’ve talked about it before, the wistful feeling in the air that’s unique at this time, and as usual it’s more complex than I’m able to describe properly. I might begin to get close by saying that in autumn for me the heat of summer fades differently than the chill of winter departs in spring.

Spring, being a young season and therefore a bit on the stupid side, is more brash and confident in the way it unfolds than is autumn. I think that last of the summer’s warmth doesn’t really last very long, but may seem to because it’s somehow more placid; like people, it’s got experience and some perhaps even wisdom with some age and maturity to rely on. It’s in no hurry to move on to make way for winter, a thing that appeals to me, though I’m undecided as to whether I like that sense of languorous ease in the air better or the fact that I take the time to recognize it. People so often refuse to think about or see things beyond the length of their noses, and I suspect an awful lot of them simply don’t notice something that’s always been important to me. This is like appreciating a secret that’s in plain view…people could enjoy it as much as I do, all they’d need do is allow themselves to. That’s a pretty fair idea to me, and goes back to what I’ve already written about how important creative and independent thinking are in simply being able to enjoy life…you can’t appreciate something if you’re unaware of its existence.

I’m only human, so I can’t say I see the days passing with any degree of acceptance of or resignation to my limited situation. I enjoy each with an almost rebellious fierceness, and I’m reluctant to let go of any time I can be conscious and awake to relish it. Days like these aren’t meant to be spent inside or close to the house. Dining al fresco at a restaurant, flying my models at a park, or even picking up a few things at the store late in the day to bask in that fall feeling of an early dusk as the sun sets earlier…those are the ways to enjoy autumn weather. You sip it, not swill it, savor it, not merely taste it. I know that we’ll get my Honda converted in time for me to do this, but I confess it’s tough waiting. Worse than that is knowing that those days, once past, stay past, all because of the lack of a glorified appliance!

I have noticed something about the way time is passing for me that I find rather disturbing. It moves along faster than it used to. I know, I know, for me and everyone else out of their forties. I just have a hunch that this isn’t my imagination working overtime…I think it’s because once you become essentially housebound, not only are the days painfully similar, so is the daily routine, and any well entrenched routine automatically goes faster as time goes by. There’s something else apart from that, too: not long ago I remarked that becoming disabled was analogous to stepping from a merry-go-round, but it’s even more like a boat that’s loosed and takes off, moving swiftly along in a river’s current…it’s just that from my perspective, it’s the world rushing away. The water may be dead calm but I know I’m moving, though the illusion’s convincing.

As the title says, I need an anchor to keep world from rushing away quite so fast. Ultimately, nothing will be as effective in that role but getting my Element modified. It won’t retrieve my old life back, I am very clear on that, but it will do, without a doubt. As with an anchor, it won’t allow me to move upstream again, but will surely slow my movement downstream. I already know part of what’s waiting for me:further disability, pain and frustration to name a few. It’s dimmer there and the colors of the world somehow seem muted to my eyes from my place here. I hope you’ll excuse me for not being in much of a hurry to reach that destination.

Since I’m constrained for at least the time being from the kind of involvement with the world at large I need…and I’m confident I’ll eventually attain…I try to keep as much of the world here with me as I can. My computer sims, my hobbies and of course writing all help with that, and I hope this new venture of writing online columns will be extra effective. They’re my way of casting weighted lines in the river that’s carrying me along in hopes they’ll snag on something ans slow my headlong plunge…even a little bit. I like to think I have something in common with the personification of autumn I mentioned: I prefer to take my time in getting anywhere.

Branching out :)

Wow…I’m definitely feeling like I just took a turn down the rabbit hole!

As I mentioned in the last post, I submitted an article to the American Daily Herald in hopes they’d like it. Well, I’m still in shock, they not only liked it, but asked if I’d like being a regular columnist. Of course I agreed, it’s not a paid gig, but I’ll be published regularly and I have my name on the ‘Opinion’ masthead.

It’d be crass to mention this blog there, but my hope is to get more exposure which might get my name recognized as a more serious online journalist, which I hope in turn will lead to some more attention here.

I’ll be adding the link to the site, as well. I hope you’ll enjoy it, and I’m not just saying that because I’m writing articles there…they have a nicely well rounded lineup of topics and columnists.

For now, I hope you’ll take a look at my story, a detailed account of how I ran the disability approval gauntlet and survived to tell the tale!

It’s titled In America, The Disabled Are Judged By The Dysfunctional

This could end up being a lot of fun!

Wacky Writing Weekend Wingding Wrangling Words

Fascinating, as Mr. Spock was wont to say. null

That’s twice this week I’ve quoted Spock. Maybe I’m going Vulcan.

The first time was in reply a rather well known online journalist with whom I’ve been corresponding of late. She enjoyed my style and suggested I write and submit an article for publication in a more mainstream online magazine. She dismissed my doubts that I’m not qualified to write for general consumption (no academic credentials, brain damaged) peremptorily so when she also pointed out that wider exposure to my writing might just be a good thing for increasing awareness of my cause, I, like Spock, replied that it sounded flawlessly logical.

What can I say? I spent most of Saturday night writing and much of last night proofing and polishing a piece that I just submitted this morning.

I’m feeling kind of surreal here…if you’ve done any writing for public consumption, you know you tend to keep picking at it after you thought you were done making it into a finished product. Change a word or a whole phrase here, delete a redundant line there…pick, pick, pick. I can’t speak for anyone else, but after a while I start wondering if I’m lessening the piece with my continued prodding and massaging. Was it just okay but I’m making it better? Was it actually pretty good but I’m making myself look stupid instead of clever?

As I thought about all this, my hand reached out and hit the ‘send’ button. I do hate a coward, and I was being one. If it was good to begin with, the editor in chief will like it and we’ll go from there. If it sucks, they’ll thank me politely and wish me luck in any future endeavors.

As the saying goes, ‘the perfect is the enemy of the good,’ so if it was all right to begin with, further monkeying with it in an effort to improve it was a waste of time at best.

I guess I’ll just have to wait and see. Even if it’s rejected, this could be the start of a whole new adventure. Faaaaaaascinating.

Hey, what’s the worst that can happen, anyway?