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.

4 comments:

JESSICA said...

Hi Scott

Thoes are very good goals to have, if more people had goals like that this world might be a better place. I know you have done a good job on one of your goals, the being a good son, your mom has never said anything bad about you.

I will continue to keep you, Kirsten, and little baby Stafne in my thoughts and prayers.

Jessica

Fischbach said...

Memory: Hiking with Jae and Mark near Blue Diamond, Nevada. May you passionately enjoy all that surrounds you.

Keith said...

Hello Scott, My name is Keith. I'm 36 and I do not have ALS. There I have it down for posterity too. At least for the moment anyways... I'm sitting here thinking about this whole ALS thing. Here it is a Friday and I was just about to leave work and I thought I'd just got to ALS-TDF and look over some things before I left. I ended up on the FFC site and went over to your site again. What a great site you have I might add. I read your story and literally here I am in tears as I write this. People who know me, know this is not something that I do easily. You seem like such a great guy with a great family and all, then poof this ALS thing comes in. I try and put myself in your shoes and go to myself. Wow! I'm older and I don't have any serious illnesses at the time. Maybe I'm not as good of a person or what have you? Why the hell do you have this disease and not I? Life it seems is full of questions like these that I still have no answers on. It seems as if some things are simply random and have no explanation. This certainly seems like one of them and there is my explanation. I can say that I'm truly sorry about this. From my standpoint that doesn't seem to buy much though.

I can only imagine how your family and friends must feel about this. After all I feel terrible about this too. I sometimes think diseases are harder on the family than the patients. I know if I had one of my parents sick I would be devastated. I really wish it was some kind of gaurantee we could give everyone in life to live past the age of 70 at least. It's also funny many of us live our lives like we are immortal yet we all are not. We all are terminally ill. Unfortunately. I see it as a duty for those who are not ill or sick to help those who are.

You are correct an open dialogue is among the healthiest of activities, and sorely lacking in everyday life in my opinion. That is my opinion as well. So consider this your stage and I am in the audience listening and routing for you. We all are. Share with us your thoughts and moods about things in general. Maybe we will disagree on something? Maybe we will agree on something! Disagreements are not bad, as they show another viewpoint and perspective to look at things.

Here are some of my current thoughts:
You stated before that:
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.

I don't think you have to worry about any of this. Just the fact that your are consciously persuing this, means you are already are good in some way for all these perspectives. Many of us are not good at something cause we don't think we need to be. Hopefully though just from that you don't feel your life is fulfilled! There are way too many things for you to see, hear, experience and more ideas for you to share on your blog page! :-)

OK... All this typing has made me feel somewhat better. Hopefully it hasn't put you to sleep yet! I'm actually not terful now and I'm back to my more normal non-emotional self. I also need to get moving so I can get home this evening. I thought I would share this cool webpage with you thought before I left. Let me know what you think of it? It's pasted below.
http://www.jasonbecker.com

Take care,
Keith

Jo said...

Dear Scott,
As a member of your family, I just want to tell you how proud we all are of you!! We pray for you, we support you and we care about you! You have a great family 'net' that you can use anytime you need strength, encouragement or just a sounding board. I think this site is a great way to get you 'voice' heard. I look forward to reading more about you and how you face this terrible disease. It will give the rest of us strength to see us through tough times too. I pray for your wife and unborn daughter too, to give them strength and courage to 'hang in there' and love you with all their hearts. Love shared by so many is an awesome tool to help us through. God bless you!

Wally and Ann's middle child
Jo