365 A.D.

Today is the first anniversary of my diagnosis. Yes indeed, it was one year ago today that I walked into a doctor's office, thinking I might have a pinched nerve or some other manageable back injury (oh how naive I was!), and was essentially whacked over the head with a 2x4. I was told I had a horrible, incurable disease. Or it was just stress. Why is it doctors always seem to say it might be 'stress' when the alternative is fatal, or they just don't have a clue?

That day was etched, as if with a rusty knife, into my mind forever. I walked out of the doctor's office in a daze. I sat down in the car, blazing hot from the humid summer heat, and did what most anyone would do. I called my mom. I then called my wife, and proceeded back to work, where I walked in, grabbed my stuff, and promptly walked out without uttering a word to anyone. On the way home I stopped at Dairy Queen, picked up a BBQ sandwich and a hot fudge malt. And fittingly, as if via some cosmic foreshadowing, I tripped on the way up the stairs and smashed the bag of food all over myself. I decided on a beer from the fridge instead. Within the span of one hour, I went from a normal day to sitting at home on our couch, contemplating the end of life as I knew it. We had just learned Kirsten was pregnant a few weeks ago. My bright future with them had just been erased.

On the one hand, let's call it my weaker left hand, I'm in worse shape than I was a year ago. The insurgents have been effectively kicking my ass, blowing up motor neurons left and right (mostly left) at the rate of several a day. That's not a scientific description of course, I'm just saying it that way for dramatic effect. But metaphorically it's true. The disease is waging war on my body, and as with terrorism, there is virtually nothing I can do to stop it.

More specifically, my left arm is much weaker. Typing is more of a chore than it used to be, and I screw up quite a bit. My right arm is starting to be affected, but still in pretty good shape. I can't really carry my daughter in her car seat anymore. My balance is much worse, as I've mentioned in the past. I've fallen a few more times recently, and walking is rather tiring. I've started to avoid climbing stairs when possible. I can no longer run.

I have fasciculation throughout my entire body, and much like the Energizer bunny, they just keep going and going. 24 hours a day, 7 days a week. I can feel vibration in my ear drums. In my face. Near my eyes. But oddly enough, I want them to continue. As long as they occur, electrical signals are reaching my muscles, so I'm happy to have them go on forever.

The most notable change has been in my energy level. For the last few months, I've been exhausted most of the time. I sleep 8 or more hours a night, but I wake up feeling like I didn't sleep a wink. My chest and abdomen, which are rather tight, seem to constrict my breathing and I sometimes feel short of breath. However a recent checkup ensured my diaphragmatic breathing is still intact. My "Forced Vital Capacity" is 113%, as it's always been, so that's good news. My doctor has ordered a sleep study to see if I have any sleep disordered breathing. I told him I don't care what the cause is as long as they can help me get some energy back. Honestly, some days I'm not sure which would be more frustrating: being paralyzed or having mobility and no energy to use it.

On the other hand, let's say my stronger right one, I am still alive. And my progression has been much slower than I had anticipated. Going back to my car accident analogy, where I imagined myself having been killed on this day one year ago, I have had 365 phenomenal days of life added to an already charmed existence. I can still walk and talk. I can still eat and drink and do most of the things I've always done. And most importantly, I have seen the arrival of my daughter, who is simply the most wonderful, beautiful, and magical human being I have ever had the privilege to know (my wife being a close 2nd of course).

So perhaps the future I had once counted on is no longer reality. But none of us is guaranteed a single minute of the future, and each and every second I have been alive, especially since my diagnosis, has been a gift. And while today is a somber day for me and my family, we are choosing to celebrate today as each of us should every day. Another day offered by God, by Mother Nature, or whatever forces you believe exist in our universe. Another day to drink and be merry. To love and to cherish. To be happy or sad. To live long and prosper. Another day to simply exist.

Life in the fast lane

A month or so ago I was out with some friends, enjoying a nice summer night, and I had the distinct notion that the number of nights like this left for me were numbered. That I needed to make the most of that night, and suddenly I didn't want it to end. But it was a 'schoolnight', and the clock was approaching bed time. My friends started to get up, to call it a night, and I very nearly grabbed them to shout "But what if this is my last night out!?" I knew of course that, barring some even crueler twist of fate on the way home, more than likely I would have other nights to look forward to. And honestly, part of my notion was to take advantage of my wife's generosity in staying home to take care of our girl. Even healthy parents need to get out and about once in awhile! But add a fatal illness to the equation, and the reality is you can't keep saying 'there's always next time'.

I've been struggling with the notion of 'last times' since my diagnosis. Would my day of golf with dad last fall be my last? Was skiing last February my last time on the slopes? When will be the last time I'm able to hold my daughter? Of course there are many people in the world who haven't even had their chance at a 'first time' for things they'd love to do. So I'm not complaining. But every day, I have the overwhelming notion that I need to not only appreciate every thing I do as if I might never do it again, but that I need to cram in 30 or 40 years of life into 5. Or 3. Or 2. Whatever time I will be allotted in life. I feel enormous pressure that I need to do all the things with my wife that we might otherwise spread out over a lifetime together. That I need to learn how to be a great dad in a matter of months, and there is no time for mistakes. There is no time for television or idleness. I can do that later.

Ha. How's that make you feel couch potatoes? Even a person who is completely paralyzed can still watch TV.

While my obsessing over 'last times' is a bit melodramatic, it seems to me a natural reaction, and one that has really spurred me to try and appreciate every minute of every day that I'm alive. To live in the now. I've struggled a great deal throughout my life to truly live in the present. But now I have to live life in the fast lane. To do everything I possibly can while I'm still mobile. While I'm still alive. And let me tell you, trying to count your lucky stars while traveling at the speed of light is enormously challenging, if not flat out impossible. People like to say we should all live every day like it's our last. That sounds good on paper, but it doesn't really translate well in reality. As another PALS pointed out in a book I read recently, if we all lived like that, we'd be hung over every morning and nobody would take out the trash.

The key of course is balance. We need to balance planning for our desired future with stopping to smell the roses. We need to go to school to learn and get a good job, workout to keep in shape, plan for retirement, in addition to the seemingly endless cycle of chores like cleaning house and mowing the lawn. But we also need to balance 'achievement' with 'appreciation'. To enjoy the journey along the way. Every day I endeavor to do so. To learn to live fully in the moment, even if that moment involves difficulty, hard work, or planning for the future. Although even a dying man can't spend every second focused on lapping up the life left on his plate. At least I haven't learned how to yet. Sometimes I just need to unplug and vegetate. Guess I'll have to learn that taking time to unplug is necessary too, no matter how much time I've got left.

My friends, rightly so, needed to get home and get a good night's sleep. They lead busy lives like most of us do. And I hope my ranting here won't cause anyone to feel obligated to spend more time with me, or stay out past their bedtime. That's the last thing I want (the obligation part, not the time spent with me). I just ask for your patience in dealing with my frantic and seemingly random pace of life. Some days I will want to go out and stay out. Party like it's 1999. But sometimes I just won't be able keep up, and I'll need to reign in my ambition, and live within my means. But know this my friends: whether I'm living fast or taking it slow, every second I spend with you is a blessing for me, and in my mind anyway, one for the history books.

Episode IV: A New Hope

Dear Senator Coleman,

I am writing to say thank you for the recent announcement of your intention to introduce legislation which will broaden the embryonic stem cell lines available to researchers for federal funding. I must admit I was shocked to hear about it, but pleasantly surprised as well. And to have it followed by Senator Bill Frist's endorsement of legislation to further expand federal funding, I truly felt as though I must be dreaming. Both are a most welcome turn of events, especially now as my disease (ALS) continues to wage war on my body.

While many of us would like to see all limitations removed completely, I am most impressed by yours and Senator Frist's willingness to compromise on this extremely complex and divisive issue. Indeed, given today's political climate and the seeming stalemate between Democrats and Republicans, to many of us it seems as if a miracle has happened. Appropriate perhaps, given the miracles we all seek from the potential within stem cell research.

I look forward to following these developments over the next several months. For now, please accept a most heartfelt thank you, and know that you have given millions of Americans new hope.

Sincerely,
Scott Stafne