Oh, look, another year, another MS Walk, must be time for another tear-jerker story…
Sigh. See, I don’t want these stories to be tear-jerkers. Honest. I want them to just be…I dunno, a little peek into our lives, what our hopes and dreams are, how MS has been affecting us – and more importantly, how it has NOT been affecting us. That’s the important bit, that is. MS is kinda…well, it’s not kinda shitty – it’s COMPLETELY shitty. But MS can be sort of…hrmmm. I don’t exactly know how to phrase it. A lot of people like to call it “insidious.” According to Websters, that means “Working or spreading harmfully in a subtle or stealthy manner.” I don’t care much for that definition. There is nothing stealthy about MS. It is in your face; a constant reminder that yes, there is ‘something wrong with you.’ But we try pretty damn hard to not let it ruin our days; we try and make the most out of every waking second we have together – and even several of the sleeping moments together. 😉
Kwipette aches every day. Her pain has gotten worse over the past year. It used to be sporadic. Now it’s a constant companion. Her shitty retail job doesn’t help much; she has to lift a lot of stuff and there’s a lot of stress involved. Unfortunately, until my company makes a million, our insurance won’t cover her. So she has to stay at that job, adding more and more stress every day, because we can’t afford to pay her medical bills without insurance. Ask me sometime how I feel about the Medical and Insurance fields. Just make sure I don’t have any sharp objects nearby.
Blah. This certainly started out on the completely wrong foot, didn’t it? Let’s try again: Last year, team NeenerNeener.net KICKED ASS. Our grand total came out to over TEN THOUSAND DOLLARS. And over EIGHT THOUSAND of those dollars came from YOU! Proud of yourself? You damn well should be. I started out wanting to raise $100. I ended up getting, oh, EIGHTY TIMES that amount from you guys! Not too shabby, eh?
So now here we are again. Me trying to skirt around the issue, trying to write a story that will come close to touching you the way all of your contributions touched us last year. I still go back and read your messages, you know. Probably about three or four times a month. I can’t sleep; I get up quietly so as not to disturb Kwipette, and I sneak into the office and pull up those messages. Some are the ones you put when you sponsored me; some were just supporting emails apologizing because you couldn’t afford to pay anything (as if you need to feel guilty about that!), and some were just emails saying hi and telling me what my stories have meant to you or sharing your own pains with me. I guess maybe it’s a sign of my own little fragile ego. A shrink could probably have a heyday with all my neurosis. In truth, it does make me feel pretty damn good to hear the nice things you guys took the time to tell me. I guess that’s why I do all this; to get some words of encouragement. But also, I like to read those comments and stories because…well, I dunno how to explain it. Because for the time it takes me to read your stories, I know I’m not alone. I’m not forgotten. Somebody out there is hearing my desperate little cries for help; someone is getting those messages in the bottles I keep casting out to the ocean that is the ‘Net.
The past year has been…well, it’s been good. We’ve got a nice new apartment in an awesome little setting – ponds and ducks and swans (whom we feed our stale bread to), a gym and a pool and a jogging trail (which we merely like to mention, but never use), and a whopping HUGE bleach stain in the middle of the carpet thanks to the kitten from hell. Sigh.
Of course, some of it has not been so good. Kwipette’s MS has progressed. She has trouble typing, and is in constant pain, and has trouble walking long distances. It hurts to type that – as if by putting it down here, by writing it out – somehow that makes it more real. Before we could perhaps ignore it. But now we’ve admitted it. And I guess you can’t really take that back. But it’s the truth, and it scares the shit out of both of us very badly. Look, it could be much, much, MUCH worse. There are people who are WAAAAAAAY worse off then Kwipette. I know that. I’m not trying to state we are worse off than anyone else. We’re not; we’re young, very much in love, and have great lives.
But we’re also very scared. Every day. Kwipette told me once, in one of our late-night chats where we both held each other for all we worth and vented in the form of tears and blubbering, that she wakes up every morning wondering if she’s going to be able to walk that day.
Every morning. Wondering if today will be the day she will have to really use the wheelchair.
This week, for the first time, we used her handicapped parking placard. That was…ugh. Long walks through a parking lot just wear her out too much. Looking at her, you couldn’t tell that there’s anything wrong with her. You’d think we were just some snot-nosed asshole couple that manipulated their way into having a handicapped placard. You’d think she was just lazy, because you couldn’t see the pain she feels just getting out of the car. You’d think she was a sloppy dresser if you saw her wearing those loose pants because the injection sites where I give her the medicine every other day were inflamed. You’d think I was a sexist pig, making her push the shopping cart, because you couldn’t see that the cart helped her keep her balance as she walked and let her lean on it for support. You’d think she was drunk if you saw her swaying on her feet as she stood. You’d think she was mentally handicapped if she slurred her words when speaking with you or forgot what she was saying. You’d think it would be okay to make fun of her.
You’d think it was a damn shame, how far up your ass I managed to work my boot.
Sigh. I’ve been having some problems too, lately. I find that, day to day, the number of people I want to inflict bodily harm seems to be increasing by leaps and bounds. People can just be…well, they can just be such stupid goombahs. Last month, Kwipette went into her woman doctors office to get her woman bits checked up (I’m not really sure what that consists of – I think they just go in a back room and tell jokes about what a terrible lover I am). Anyway, she’s being ‘screened’ by one of the office staff girls. As is common when she’s dealing with things medical, Kwipette tells her that she has MS. The girl responds with, “Oh, I forget – does that kill you or just make you crippled?”
Does that kill you or just make you crippled.
Every fear we’ve faced in the past couple of years, right there. In her face. She came home that night and cried harder than she has in a while. When she told me what happened, she had to physically restrain me from going to commit murder.
Does that KILL you or just make you CRIPPLED.
See, a close friend of mine summarized it pretty nicely: “99.9% of the time, situations can be handled by just being cool, calm, collect, and talking your way through difficulties. But that 0.1% of the time, you’ve just got to start jumping up and down and screaming.”
DOES THAT KILL YOU OR JUST MAKE YOU CRIPPLED.
I wonder if that stupid bitch has any idea – the slightest of a clue – of two things: 1) how very horrific and painful her question was to Kwipette; and 2) how very, VERY close she came to getting the living shit kicked out of her.
I am such a wimp. I avoid confrontation like the plague. But I was very intent on driving over there, going into the office, asking to speak with the young lady in question, and then picking up whatever heavy object was handy and beating her with it until the candy came out.
Sigh. This idiot worked in a doctor’s office. Some of you may not believe it, but I swear, this story is true. This… this worthless, stupid, ignorant, insensitive, idiotic bitch actually said that. To the woman that means more to me than anything has ever meant to anyone in the world. And I bet that stupid feckless wonder probably has great health. Did I mention I carry around an awful lot of frustration? And it’s growing; every day, it seems, someone is volunteering for a throat punch.
And then there’s you guys. You people; most of whom I’ve never met, some of whom never heard of me until someone sent them to read the story I wrote last year – you people pledged over EIGHT THOUSAND DOLLARS. On behalf of a stranger.
Ain’t human nature a bitch? 😉
So here I am again. Jerking at your heart-strings; trying to convey a glimpse of our every-day life so that it will touch you to re-create the actions so many of you took last year. And to tell the truth, I’m scared out of my head. I’m terrified. And excited. And humbled. And so very, very hopeful.
I’m terrified that we’ll fall not just short, but downright DEAD this year. Last year, I was perhaps at the peak of my fame; I had tons of visitors to my site. This year, I’m less than a week of releasing a new version, and there hasn’t been a blip out of me in months, aside from some space the folks over at CoD were kind enough to give to me. And everyone at the National MS Society is hoping and expecting us to do at least as well this year as we did last year. Gulp.
I’m excited because I wrote to Microsoft. They weren’t able to come up with anything in time last year; but I’m so very excited that maybe, just maybe, this years letter will reach them in time, and they’ll pledge some whopping amount. And I’m excited because I’m trying to get some other companies on board this year: Mythic, for one. I’m hoping someone there will take notice and jump on board. Ben & Jerry’s – they are the source of all Good in the universe, after all (well, next to Gillian), and I’ve got something kinda crazy planned for the Walk involving them, so I’m hoping I can find someone there to talk to about sponsorship. And of course, Turbine. They have already helped out by donating some prizes (which I’ll get to in a bit), and I’m hoping I can weasel some more goodies from them. And besides, they let us party with them at the ACPL, so that’s pretty damn significant alone. 😉
Odds are, I won’t hear from any of those companies except for Turbine. They’ll help, I’m pretty sure; but the rest are pretty much a guessing game. But maybe – just maybe – someone there high enough on the ladder will catch wind of this in time to help out. And maybe, MAYBE, even more people will donate. And we’ll beat last year’s total, and I’ll get to be a hero yet again.
I’m humbled, because any of this greatness I achieve – it’s from you. You people that don’t really know me; most of you have never met me (which is probably a good thing, come to think of it), and most of you have never met Kwipette. But you reached out, and you gave. You gave money, you gave words of comfort, you gave story after story. Some inspirational, some touching, some sad – but all so significant. You took the time to share that little bit of your souls with us. You broke off chunks of your hard-earned pay, and you shared that with us and with everyone affected by MS. You gave your support, your comfort, your caring. You gave. And I know that I will never ever ever be able to thank each of you enough. To tell you how every little penny and every word you gave touched and helped us.
And I’m hopeful. I suppose it’s really sad – but I’m so hopeful. I see the amount of money that people all over the world raise, and I hope. I hope that this year there will be a staggering new breakthrough – some new branch of research that has struck paydirt. Some laboratory where a ten-thousand dollar grant from the National MS Society was just what they needed to purchase something or another that they needed.
And now they’ve found a cure. I hope; oh, Lord, how I hope.
Gah. Stop with the making of the tear jerking already! Good grief, see what happens when I try and write seriously? I think I better change the story to the time I caught my… er… self… in my zipper. That was not fun. But this – THIS is going to be fun! Yes!
Last year, I couldn’t think of a way to say thank you. This year, I’m afraid I haven’t done much better. But I’ve got something, at least. If you pledge to team NeenerNeener.net – for every ten dollars you pledge, you will be given a lottery ticket. After the last of the donations has been accepted, we will hold a kooky little raffle. Right now, I’m afraid to say we don’t have a lot of prizes. And even worse, some of them are vicious little joke prizes – but they should all be fun, one way or the other (we hope!). Here’s what we have so far:
- 4 copies of the ORIGINAL Turbine/Microsoft Asheron’s Call; all in their boxes, and ALL autographed by the Turbies!
- 1 hour of powerleveling, by Kwip, on Darktide (pity the poor bastich that wins THIS little gem!)
- 1 copy of Asheron’s Call:Dark Majesty (not autographed – well, not yet, lemme get a weekend off and see if I can get past the guards at Turbine and we’ll see what we can do)
- 1 copy of Mythic’s Dark Age of Camelot
- 2 Team NeenerNeener.net’s OFFICIAL MS Walk 2002 T-shirts, autographed by the team, and used to mop up the sweat from my brow – well, only on request if you’re fussy.
- 1 $10 gift certificate to Barnes & Nobles
- 1 spoon used by Kwip on a pint of Ben & Jerry’s Chocolate Fudge Brownie
- 1 $20 gift certificate to www.angryyoungandpoor.com for all your punk music and clothing needs, of course.
That’s it for now; hopefully I’ll have some more ‘real’ prizes soon.
One more thing: thank you, everyone. From the bottom of my heart, thank you. Those of you that can’t pledge, don’t feel guilty; spread the word as best you can, that’s helpful. Those of you that can’t do that, why not drop Kwipette an email and say hi? She’d love to hear from you. Tell her you’re thinking of her. Tell her you wish her well. Tell her not to marry me – woah, wait a sec, DON’T tell her that. Sheesh. If you can’t drop an email, think good thoughts about us and your well wishes will be appreciated. If you can do that, then smile at someone. If you can’t do THAT, then stop reading this page, Yellow Rat Bastard, and get your laundry together or something.
For now, I’m gonna climb into bed with the person I love and hold them tight as we drift off to sleep together.. I hope that everyone out there can do the same.
Take care of yourselves, friends.
Live. Love. Laugh.