Tuesday, January 25, 2005

Weekend Getaway

Kirsten and I barely escaped the grasp of the winter storm last Friday by flying down south to Florida, where we stayed with some wonderful friends of ours and their 3 adorable children. Ages 4, 5, and 6. And full of that incredible kid energy. Painfully so at times. I have the bruises to prove it.

We had a great time. The weather was a balmy 70 degrees (ok, balmy compared to our frozen tundra in MN). I actually enjoy the winter most of the time, but I was really appreciating wearing a pair of shorts, sitting on the grass, and soaking up the smells of a warm climate. Waking up in one state, going to another where you don't have to trudge around in the slushy muck is almost surreal. Indeed, things felt a little dreamy there for awhile. Partly because we got up at 4am to catch the plane and I was a walking zombie (if you know my sleep habits, you know how big a sacrifice that was), but also because I couldn't help but feel like we were transported to a world where 3 children pretty much run the show. A scene I daydream about often these days. Throughout most of my life I have never really been a 'kid' or 'baby' person. I just couldn't relate. I found them kind of annoying and hardly conducive to an active social life. But I always knew I wanted to have kids of my own. I had no doubt that I'd feel differently about kids that were mine. Kirsten told me when we were dating that she'd never really considered marriage very seriously until she'd met me, and realized she wanted to have children. My children. A huge moment in the development of our relationship. And here we are a few years later, awaiting our first child. Tempus fugit. Time flies.

I've come to feel that raising a child (whether your own or not) is one of the ultimate ways to participate in life. I'm sure there will be moments where I'll question that logic. Like at 4:32am when it's my turn to get up and attend to our little girl. Given my situation now, I'm going to love doing everything it takes. Realistically however, I know it won't be all precious moments and rainbows. Somehow though, in the last few years, I've started to realize that raising children, being a good dad, is one of my biggest priorities for my life. Far outweighing my career, hobbies, or any 'material' pursuits. I think it's a pretty common evolution for young adults, but it has really been a surprising journey for me.

So back to Florida. Our friends' children, 2 girls and a boy, are simply wonderful (as are all of our friends' and family's children, we're not playing favorites!). And while they were climbing all over me, saying 'watch this!' every 3 seconds, giving us a million hugs, and of course saying the darndest things, I was struck with a certain kind of joy I simply have never experienced before. The trust that these kids put into you, and the awesome responsibility that comes with it, it's nearly mind-blowing for me. And while I enjoyed every minute, and look forward to spending more time with all the children I know (ok, that sounds a little cheesy, I'm not like the Pied Piper or anything), such experiences are bittersweet. Simultaneously wonderful and incredibly sad. The youngest girl, 4 years old, little Alex, likes to come sit with me and build a tent with her blanky. I feel this incredible bond with her that I can't explain. Partly because she's this great little person, but I think partly because it feels like I'm getting a chance to hang out with someone like my daughter in the future. I don't want to be a downer, I know people want to hear that everything is ok, but I have to tell you that it's just destroying me that I finally figured out what to do with myself, and now I might not have the chance to do it. I know deep down that I can be an outstanding father. Certainly not perfect, but I already know that I would do anything for my child. I just want a chance to get to know her. To play silly games with her. To learn what toys she likes. To hear her say 'Daddy, read me a story' and know that I would drop everything and do it.

Ok, enough of that. The trip was wonderful. And did what any getaway should do, allowed us to get away from things for a bit. Even though I'll never be able to escape my reality, I can at least daydream of another one once in awhile. Sorry to get so morose. I promise next post I'll try to be a little more upbeat. I don't want to scare any of you away. But thank you for listening.

Monday, January 17, 2005

139 A.D.

Today is the 139th day after my diagnosis. Overall I'd say I'm doing pretty well. Still primarily a mental and emotional struggle. Physically my left arm is getting weaker. I can't lift things or grip things quite as well. Sometimes I get a numbness or tingling feeling in my fingers. I have fasciculations (fuh-sik-you-lay-shuns), or twitching, in both arms and legs, my stomach, my back, my chest, and a little in my neck. 24/7. As a symptom goes, they aren't that much of an inconvenience or pain. It's what they represent that is the most nerve-wracking. Pun definitely intended. My left calf and quad muscles have seized up on me a few times, usually while sleeping. The pain is pretty bad, but nowhere near as painful as startling Kirsten out of sleep. She needs her rest while carrying our little girl. Yes, we're having a little girl if you hadn't already heard. There hasn't been a Stafne girl born in 3 generations, so she's bound to be pretty spoiled. I can't wait to meet her. Just 3 more months to go.

Anyway, for those of you that have had leg cramps in bed, you know they're pretty alarming. My legs are a little less sure of themselves. My balance is a few notches down from normal, but I haven't fallen yet. I've been trying to get to our gym at least 3 times a week, use the treadmill for 30 minutes. Definitely helps to stretch and loosen up before and after. Helps relieve a ton of tension too. But I have a hard time watching others in the club doing their thing, seemingly leading healthy lives. I feel a little bit like I'm getting away with something by even being there. Working undercover perhaps. Mostly I'm just glad to be there.

So yeah, physically I'm not all that bad off. My mental and emotional state is still a daily rollercoaster. But nowhere near the nasty ride of the first few months last fall. I've more or less reached a 'new normal', where I'm just trying to keep focused on the day at hand, appreciate things as they happen. I've struggled quite a bit between what at first seemed to me to be 2 opposite states of mind: acceptance and hope. How could I accept what doctors tell me is my fate and yet keep hope alive? It's a constant tug of war in my brain. I'm trying to reach a balance by hoping for the best, and preparing for the worst. And hope isn't limited to a cure. I can still hope for a slow progression. For advances in assistive devices. For good times with my friends and family. Oh great, I haven't cried in a few days, and now the tears are starting. But they're really a good thing for me. I haven't been very good about getting out my emotions for many years. It hurts, but in a way it's a good hurt. A cleansing.

Alright, enough of this. Back to the real world. Sometimes an extremely scary, frustrating, and painful world. But mostly a good one. My mantra, from here on out: Carpe deim. Seize the day.

This post brought to you by the number 3.

Friday, January 07, 2005

All the world's a stage...

Hello. My name is Scott Stafne. I am 32 years old. And I have ALS. Ok, so most of you reading this already knew that. I just wanted to get it down for posterity. The whole blogging thing has pretty much escaped my interest up to this point. But as I’ve been trying to figure out a way to pseudo-constructively process my emotions and feelings, I realized that a blog, for most people anyway, is really about having a voice. And I firmly believe it is human nature to want to have a voice, whether big or small, whether heard by many or a few. All my life I’ve been obsessed with the idea of death, my mortality (or hopefully, my immortality). And I often get this feeling of anxiety or fear that I won’t have time for my voice to be heard. I think most of that stems from not being confident in what I want my voice to be, or how best to project it out into the world. So what I’m really saying with all that mumbo-jumbo is that I’ve decided to start an online journal, a web log, or blog if you will, and I humbly invite you to read it at your leisure.

My motivation is about equal parts self-absorbed emotional venting, and an attempt to share my journey with others who might want to keep up-to-date on where I’m at, or perhaps even gain some insight into life with a fatal illness. The sharing part is what I’m really referring to as ‘my voice’. My need to try and make sense of my life, to find meaning in it, to feel like I’ve contributed something to the world with whatever time I’m given. A favorite quote of mine, from Walt Whitman (also in the film “Dead Poet’s Society”), pretty much sums it up:

“O me! O life! Of the questions of these recurring, of the endless trains of the faithless, of cities filled with the foolish; what good amid these, O me, O life? Answer. That you are here, that life exists, and identity; that the powerful play goes on and you may contribute a verse. That the powerful play goes on and you may contribute a verse."

So my writing here is at least one part of my life’s verse. I promise you many self-absorbed deep-thoughts, updates on my physical and emotional health, brutal honesty, morbid thinking, and probably some good old fashioned ranting on the human condition from my point of view. I invite your thoughts and feelings in response. An open dialogue is among the healthiest of activities, and sorely lacking in everyday life in my opinion.

I’ll start off with something short, like a list of my goals for the rest of my life. They’re very simple and broad, but not necessarily very easy. I wasn’t far from realizing these things before my diagnosis last August, but the rollercoaster ride that followed really helped strip away all other extraneous things for me. All I really want to do with my time here on earth is to be a good father, be a good husband, be a good son, be a good relative, and be a good friend. If I can be all of these things, my life’s purpose will be fulfilled.