Sunday, February 10, 2013

Scott Andrew Stafne

Scott Andrew Stafne, age 40, faithful son, husband, daddy and friend, courageously died of ALS on February 7, 2013.

Scott was born May 10, 1972 to Gerry and Judy Stafne of Cottage Grove. He graduated from Park High School in 1990 and the University of Minnesota in 1995 with a degree in Mechanical Engineering.

In 2002, he married his wife Kirsten, who loved and cared for him gracefully. Upon his diagnosis with ALS in 2004, Scott “retired” from an information technology career and devoted himself to his passion for writing and filmmaking. With the birth of daughters Eva Lorraine in 2005 and Miranda Roxanne in 2008, Scott found his purpose in life.

Scott shared his friendly smile and sharp wit with everyone he knew. He enjoyed movies, cycling, travel and downhill skiing; playing basketball with Todd Frigstad, Patrick Thorsel, Eric Wenzel and his dad; and especially his weekly strategy game night with Jason Lindahl, Mike Spolidoro and Robbie Anderstrom.

Scott’s love, determination, strength and perseverance kept him with us for 8 ½ years while ALS ravaged his body, spirit and mind. He was honored with the MDA Courage Award, the ALS TDI Stephen Heywood award and an appearance on the MDA Telethon in Las Vegas in 2007. Now, his freedom from the prison of ALS has been granted, and he is finally released from the bonds of gravity and paralysis that held him down here on earth.

Scott was preceded in death by his grandparents Ed & Lorraine Wahlstrom and Gordon & Lois Stafne, best friend Andy Woodard and dozens of friends with ALS. He is survived by his wife Kirsten, daughters Eva and Miranda, loving and devoted parents Gerry and Judy, and many caring friends and relatives.

Memorials preferred to the Scott Stafne Memorial Fund at Wells Fargo.

a film by Scott Stafne

Guest Book
Please leave your thoughts, stories and memories in the comments below. Our family would love to hear from you. To read Scott's blog from the very beginning, start here.

Thursday, September 29, 2011

Seven Things

Last winter was brutal here in Minnesota. Absurd amounts of snow and nutcracker cold. But at least one good thing happened: I won a Stylish Blogger award! Click here for details. It's sort of like the Pulitzer Prize, but for blogging. Not quite that prestigious I guess. Still pretty cool though. Midwestern modesty would urge me to add a self deprecating comment about why I don't really deserve this award. Screw that. Of course I deserve it. In fact, it's long overdue. I've been passed over more times than Iowa on the New York to LA redeye. Although I must admit, I'm a little uncomfortable with the “stylish” part. I've never considered myself to have style, but I suppose I can live with style–ish. Sort of like living with ALS. Technically I'm alive, but with near complete paralysis, it's more like alive–ish.

ANYWAY, thank you to my friend Greta for thinking of me. I was admittedly surprised by the honor. As I understand it, to be a blogger you need to actually blog once in a while. You may have noticed a decrease in frequency of my posts. But did it ever occur to you that it just takes a long time for a person with no functioning appendages to type out all this brilliance? I started this post in April for the love of Pete. Now it's July August September October and it feels like someone's following me around with a hair dryer every time I go outside. But despite the hot cold hot weather, I'm totally going to start posting more often. I might even post again by Labor Day Halloween Thanksgiving (let's be realistic) Christmas.

First things first however. To properly accept my award, I must perform several very important and perilous tasks. First, I must tell the world 7 things about myself that no one else would dare tell you. Next, I must nominate 6 other bloggers to receive this award and notify them of their impending celebrity. Then, I must provide a link to the blog of whom hast laid upon me this noble distinction. Finally, I must escort Dora and her pal Boots through the melancholy forest, over the valley of broken dreams, and on to the gumdrop palace. Wait, scratch that last part. Too many kids TV shows lately.

So, on with the seven profoundly interesting things about me:

1 - I am a boardgame geek and proud of it. It's no secret that I'm a gamer, but until now, I've felt like a member of an underground club. Today I'm coming out of the closet. I love to get my geek on and throw down some mad meeple action. To be clear, I'm not talking about Monopoly, Pictionary, or Scrabble here folks. Proper games all, but kid stuff in the broader gaming universe. I'm talking about Euro games like Agricola, Twilight Struggle, Pandemic, and Power Grid. Games that focus on strategy and minimize randomness, and can make your butt pucker in anticipation of every move. I can't move the pieces, but since these games are turn-based, I can rely on my mental dexterity to conquer the world. It's the only serious hobby I've found since ALS. Not only is it fun, it's revitalized the strategic thinking part of my brain that went dormant when I retired from corporate life.

2 - This is like, soooo embarrassing. Back when I was dating my future wife, I was so self-conscious about being tall and skinny, I would do all sorts of push-ups and weightlifting to pump up my muscles before we went on a date. I doubt she noticed, but it did pump up my self confidence. ALS has forced me to remove most of the items on my bucket list. However, it was truly a relief to cross off "Get ripped like Arnold Schwarzenegger."

3 – I stole a black and red Michael Jordan basketball from Kmart in ninth grade. My friend stole a fishing rod. It was rather ingenious actually. I deflated the ball with a needle-pump adapter and stuffed it under my ski jacket. My buddy faked a limp on his way in, disassembled the rod and reel, and put them down his pants leg. This was back in the day before electric scanners, and apparently we played our parts so well that security wasn't suspicious of a fat kid and his gimp friend wearing winter coats in the middle of June. Still, despite the success of our heist, I felt so guilty I never once played with the ball, and that was it for my klepto days, I swear. Except for the Fran Tarkington rookie card I stole from Schinder's but then lost to my friend Andy when I dared him to drink a bottle of hot sauce.

4 - Despite my name, I am not in fact from Scotland. Shocking as that may be for you, your shock value cannot possibly be as great as me'own disappointment when my parents told me last week. Imagine finding out your entire life was a lie, a lie you told yourself because wearing a kilt always felt so right, and that Braveheart guy talked like you wanted to talk ("I luv'yew, always 'av"), and because no matter how hard you looked, you could never find "Scandinavian" on a map. Also, and I want to be very clear on this point, I have nothing to do whatsoever with Scott tissue and toilet paper products. No matter what those jerky kids at the playground tell you, you should not ever think of me when wiping your arse.

5 - Despite the idiom, I would in fact wish ALS on my worst enemy. I'm not sure who my worst enemy really is (terrorists? gravity? parents who neglect/abuse their kids?) but I sure am tired of having this stupid disease. I've learned all the lessons I possibly could from it, so yeah, if offered the chance to pass it off on some waste of space assclown who doesn't appreciate the value of life, I'd do it in a heartbeat.

6 - I'm gay. Well, gay–-ish. At the very least, I'm confused. I just watched all six seasons of Lost and I can't stop thinking about Matthew Fox. You know, the incredibly smart and sexy Dr. Jack who pretty much saved the world while alternating adorable outfits. One minute he's rugged and moist while chopping wood in a jeans/T-shirt combo, the next he's asking you to turn your head and cough in a pair of scrubs. It's not like I want a whole new wardrobe or anything, but I've also been fantasizing about myself in one of those adorable blue and red Warblers uniforms from the all boys private school on Glee. It's okay though, I can say these things. I have a gay friend. And I'm in a wheelchair, so I could even make fun of gay cripples if I wanted to.

Lucky #7 – I don't believe in luck. At least not in the traditional deterministic sense, where some mysterious force is taking sides in the fortunes of every individual. I believe luck, destiny and fate are just labels for events that actually happen, out of all the various possibilities, regardless of how much control we may have over them. One person's good luck is another person's bad, it's all about perspective. Turns out ALS is a part of my destiny. My need to ask why seems a uniquely human trait, one that often becomes a curse when horrific things happen. We agonize over "why me?," feel sorry for ourselves, and try to assign blame. We rage that it's not fair when we know perfectly well that life itself doesn't give a frog's fat ass about fairness. God might. God might even have a plan. But I refuse to believe that plan is to slowly torture me with ALS, to rob me and my girls of joy and love. I beg God every day for the chance to be a healthy father. If it doesn't happen, I hope I'll find out why when I die. Until then, I will attempt to find peace with the way things really are. All that said, I consider myself a very lucky man. As the greatest rock band of all time once said: "Why does it happen? Because it happens. Roll the bones."

Six Four stylish bloggers you should totally check out:

This dude could very well be my doppelgänger, only funnier. He's tall, white and handsome, wears glasses and prefers cycling, Macs, and heavy metal. Oh, and he has ALS. I've never met him in person and probably never should. Based on well proven science, "a doppelgänger seen by a person's friends or relatives portends illness or danger, while seeing one's own doppelgänger is an omen of death." Wait a minute…OMG, maybe we've met after all!

I have met Craig in person, I even threw up all over his car one time. He is a dear friend. Smart, witty, creative, and eons more consistent with his posts.

I know Dave through Craig, but have yet to vomit near him or his vehicle. Dave and his wife own Hymie's Vintage Records in Minneapolis, ranked by Rolling Stone magazine as one of the top 25 record stores in America. They rock it old school. Broaden your musical horizons and check them out.

Don't know these folks personally, but I regularly laugh hard enough to vomit when I go to their site.

Ok, that's only 4 nominees. Truth is, I read other blogs only slightly more often than I post them. But these are well worth the time to read, in addition to mine of course, which, as you can see, is now an award-winning blog. Thanks again to my friend:

for bestowing upon me this honor. I have been away from here for too long. I will post again very soon, I promise. Well, soon-ish anyway.

Sunday, August 01, 2010

Painfully Predictable

May 1: WTF?
May 2: WTF?
May 3: WTF?
May 4: WTF.
May 5: WTF?
May 6: WTF!
May 7: WTF?
May 8: WTF?
May 9: WTF?
May 10: WTF? 38!? OMG! WTF?
May 11: WTF?
May 12: WTF?
May 13: WTF? LOTF. WTF.
May 14: WTF.
May 15: WTF. LMAO? WTF?
May 16: WTF!?!?!?!?!?!?!?!?!?!?
May 17: WTF?
May 18: WTF?
May 19: WTF?
May 20: WTF?
May 21: WTF?
May 23: WTF?
May 24: WTF?
May 25: WTF?
May 26: WTF?
May 28: WTF?
May 29: WTF?
May 31: WTF?

The first thought in my head every morning is depressingly predictable. Ripped from a dream where my arms and legs are still functional, I wake up to the same nightmare. Day after day, week after week, with the knowledge that things will only get worse. Whether I feel confused, frustrated, desperate, or heartbroken, my day always starts with some variant of the phrase: WTF. Eventually, often begrudgingly, my mind allows my heart to observe, “on the plus side, you have one more day to spend with your girls.” If only my mind would shut up and listen once in a while.

WTF = What the fu$k
OMG = Oh my god/God
LOTF = Lying on the floor
LMAO = Laughing my @ss off
(if you didn’t know those, TTPYHOYAP, JK)
TTPYHOYAP = Time to pull your head out of your @ss people
JK = Just kidding
LOTFUTMSCALMAO = Lying on the floor unable to move simultaneously crying and laughing my @ss off
SBATWWHTHDIEUH = Staring blankly at the wall wondering how the hell did I end up here
SAWMTUMBNBCBBIWMTMHHA = Sitting around with my thumb up my butt not by choice but because I was mean to my home health aide

PS – Perchance you noticed May was ALS awareness month. Originally, I planned this post in parallel, a ploy to point out that PALS are already painfully perceptive of this pernicious pestilence. Predictably, as with most plans, technical problems and procrastination postponed the publishing of this pesky P populated prose. Pardon me, my passion for poetic alliteration overpowers me periodically. Please accept my most penitent apologies.

Wednesday, February 24, 2010

File Under: TMI

Raise your hand if you’ve ever spent three days in the hospital just to have a bowel movement. Anyone? If you were sitting in the room with me, you’d probably notice my hand is not raised. But don’t let that fool you. If either of my arms were functional, they would be raised high in the air, albeit with a hint of sheepishness. We are not supposed to talk about these things after all.

We called it Big Job when I was a kid. As in, “Mom! Dad! I have to go Big Job!” I didn’t fully appreciate the validity of that label until a few weeks ago, when I was in an ambulance speeding to the emergency room. The hospital folks didn’t refer to it as Big Job however. They called it a Blockage, caused by severe constipation. It’s one of the fringe benefits of ALS they don’t tell you about in the brochure. But it’s also pretty serious, and in the most literal way possible, the whole episode scared the crap out of me.

Staying regular is a universal challenge, especially as you get older. I remember reading an oh-so-clever “You know you’re over 40 when…” book when I was a kid. Every other joke was some variation on how “getting some action” no longer meant what it used to. Of course I had no idea what “getting some action” meant in any context, but the cartoons with a dad sitting on the toilet were hilarious. Now that I think about it, prune juice became a regularly stocked refrigerator item around that time.

I’m only 37, but the onset of ALS has moved up the regularity battle a few years. Lack of movement + weak abdominal muscles = no action. When you’re paralyzed, using the facilities is tedious, time-consuming, and downright exhausting. Indeed, I’m sick of planning my next bowel movement. Calling it Big Job is a monumental understatement. Picture a half-naked guy in a sling, sitting on a commode chair made out of PVC pipe, with a bucket underneath. Trust me, it’s a shitty situation for everyone involved.

Perhaps that’s too much information. The whole routine definitely falls in the “I never thought I’d be doing this” category, and it’s a real load off my mind to share this crap with others. I’ve even thought of pitching it as an episode of “Dirty Jobs” on Discovery Channel. How cool would it be to have host Mike Rowe wiping my butt on TVs around the world? Maybe you need to be in my situation to appreciate such a scenario. Yeah, probably you do.

My brief hospital stay was certainly embarrassing (em-bare-ass-ing!) But, and there’s always some sort of butt at this point, it helped me realize how emotionally constipated I was as well. I had been holding in my sadness, frustration, and anger for far too long. Ignoring my emotions created an undercurrent of depression, and worse, distracted me from appreciating all that I have. I lay trapped in that hospital bed, away from my girls and my home, and suddenly the dam burst open. I cried for hours. Letting it all out, in more ways than one, helped me return home with a renewed vigor. Time to start writing again, continue my Legacy Project, end the self-pity, and live the life available to me. Time to shit or get off the pot as they say. It won’t be easy of course, but nothing worthwhile ever is. More crap will get in my way, but now I know what to do with it.

PS. One last thing, if you’re tempted to comment on the distasteful subject matter of this post, please don’t bother. The last thing I need is more shit from anyone. ;)

PSS. Beg your pardon. That is the first and last emoticon I will ever use.