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.