On the eve of your arrival

To my darling daughter,

You are due to enter our world so very soon, but you've already entered our lives. Our excitement to finally meet you is growing exponentially every day. Don't worry my little punkin', you'll learn what 'exponentially' means some day. For now, just trust that it means 'bunches and bunches'. You'll have to trust us quite a bit during your childhood you know. Mom and dad will generally know best, although we won't claim to be perfect. Just know that everything we do for you we do out of love.

Others are apparently very excited to meet you as well. Your mom and I get asked an average of 134.5 times a day when you're going to finally come out and meet everyone. We can't make a phone call without people saying "Is it now?! Is the baby coming?!" I'm afraid mom will just drop the phone and race to the hospital before I can say no. And apparently you and your mother are public property already. I hope you don't mind all the strange hands touching your mom's tummy. Many of them seem to think you're a boy, including some homeless guy who hangs out at Target downtown, so perhaps you'll surprise us once again. If you are a boy, then I want to apologize in advance for all the pink. You know how women are with babies and pink. Well maybe you don't know that yet, but you'll learn.

You'll be entering the world with some unusual circumstances. Not only is your daddy rather tall, strange, and kind of funny looking, he's in a fight for his life against a pretty yucky illness. But I can tell you this my little sugarplum: I will never give up, and I will love you forever, no matter what condition I'm in. Just have a little patience with your old dad ok? He loves you so much, and he wants to be there for you and your mom always.

Now I know I can't order you to come out. I suppose if we threatened to send you to your room you'd just stay in there forever. That might explain mom's dreams about still being pregnant in 4 years. We're just trying to think of anything we can do to convince you. You don't want to start off on the wrong foot by disobeying your mom and dad do you? I mean, what's next? Skipping daycare and dating that older boy Timmy? You know we don't approve of you seeing toddlers. Hmm. I'll stop this car this instant little lady! No good? Oh well, guess I'll have to save those for when you're a little older.

You just take your time my dear. We can wait. Your room is all ready and we've got your name picked out. If you don't want to find out right away that's fine. Mom and dad will just have to enjoy this quiet time without you. No? The reverse psychology isn't working either? Dang! Sorry dear, please forgive your father's potty mouth.

Well, I suppose I should let you get some sleep. You've got some long days of nursing, crying, pooping, and more sleeping coming up, not to mention getting squished and squeezed through delivery. But I hope you're looking forward to it all. Your mom and dad sure are. We love you!

Your Daddy

203 A.D.

Progress is a word that typically conjures positive thoughts in most people. Technological progress. Making progress on a home project. "We're not there yet, but we're making progress." My diagnosis has forever changed my view of the concept. For me, progress is now the worst possible thing in the universe. Progress is the sum of all my fears. Many people fear change. In my mind, progress is the evil twin of change.

Most doctors refer to ALS in terms of its progression. A slow progression. A fast progression. Seems more like a regression to me. My physical abilities progressed forward from childhood to adulthood. I built them. I grew them. I achieved them. Now, my body is in a state of regression. As if unlearning all those abilities developed over 32 years. But perhaps regression just sounds too negative. Or maybe some other disease has the market cornered on it. Who knows.

Doctors can't tell me whether I should expect a fast or slow progression. And really, I don't want them to. I certainly think about it often. But now that I have some experience living with the disease, and seeing the progression of others, I think perhaps I'm somewhere in the middle. Not fast, but not 30-years slow either. Again, who knows. A coworker's dad diagnosed with ALS had his progression suddenly stop. Or at least slow down to a crawl. Doctors can't explain it of course. He's not getting any better, but he's been doing pretty well for several years. He's living proof that there is always hope.

I went to the ALS support group at the U of M clinic for the first time this month. At first I was terrified. I wanted to run screaming from the room. It was another big dose of reality confirming that all this is really happening. But it didn't take long to realize that everyone there, patients, family, friends, are just human beings like everyone else. I will never look at a person in a wheelchair the same way again. No one would ever choose that fate, so why do so many people get freaked out about it? Why should they avoid them or think less of them? It's not as if they're a smoker who makes the conscious choice to harm their health. Most likely, they had absolutely no choice in the matter. And if the afflicted person can deal with it, why can't they? Anyway, the most notable thing about support group was how varied everyone's progression seemed to be. You'd have thought it was the 'Miscellaneous Diseases' support group, a catchall for the diseases that have baffled all the doctors. "Um, we're not exactly sure what you've got Scott, but hey, there's a group for you people too!"

Many of you have commented that I appear to be doing well, that they wouldn't ever guess something was wrong if I hadn't told them. I've come to think of this time as 'The Salad Days' of my illness. Still able to do most things I'm used to, albeit with a little more effort. But I'm sorry to report that things are in fact progressing. In a very subtle way. Little things I notice here and there. Twitching that I hadn't noticed before. A bit more weakness.

My left hand and arm are noticeably weaker. The fingers on my left hand twitch most of the time, something my doctor pointed out. I hadn't noticed it. Of course my brain launched a full internal investigation trying to figure out if the doctor pointing that out really meant something. Does it signify something is around the corner? Or was he just casually observing? Very easy to get wrapped around a pole thinking about this kind of thing too much.

My right arm is showing some signs of weakness. Gets fatigued much faster these days. And my legs are getting a bit more wobbly. If you watch and listen closely, you can see that my left leg moves a bit 'funny', and I make a clomping sound when I walk. Sometimes when I'm walking, it feels like I've just stepped down from having walked on a treadmill for 30 minutes. You know that 'back on real ground' sensation you have to adjust to? Whenever I stand up after sleeping or sitting for awhile, my legs do this little 'shuddering' thing, like they're trying to shake off some tiredness. Other times it feels a bit like when you're trying to run away from something in a dream, and you're legs won't go as fast as you want them to. I try not to think about it that way though. Those dreams are too scary.

By far the most startling change I've noticed is a bit of weakness in my jaw and throat. I get tired chewing sometimes, and swallowing is just a little more of an effort. I get some twitching in my face sometimes too, around my eyes and mouth. Nothing that gets in my way of eating mind you. My appetite is still pretty darn healthy (I've actually been gaining weight). But the thought of losing my ability to eat and speak is by far the most terrifying aspect of my progression. I'm willing to bet most folks with ALS would say the same thing. Take my arms, take my legs, but for the love of Pete, don't take my ability to communicate with the world!

But on the plus side, my breathing capacity was unchanged from last fall at my checkup in February. They have a machine that can measure the percentage capacity based on your age, height, and weight. I was at 112%. I get out of breath easier sometimes, and I need to take deep breaths once in awhile to feel better, but no real difficulty. So I got that going for me, which is nice. And hey, I put together a big office cabinet from IKEA this past weekend, so I'm still good for something!

Mentally and emotionally, things are about the same (see my 'Dead Man Walking' post for more details). Daily rollercoaster. But for a few days last week, I've seemed to be on auto-pilot. Just living and doing, not thinking too much about it all. The inevitable wrecking ball always shows up to tear things down a bit, but on the whole, I feel good about my life. I'm doing the things I want to and should be doing. I try to live each day with hope for a long future. Focused on the imminent delivery of our little girl, and trying my darndest to be supportive of Kirsten through it all. Cliched as it may sound, she is indeed my rock. I'll be forever grateful that the forces of the universe brought us together. I do love her so.

The Name Game

Ok, enough of this morbid mumbo-jumbo for a moment. It's time to talk about some good stuff. By far the most common question Kirsten and I have been receiving lately is "So you got a name picked out yet?" The answer is yes. Well, sort of. Maybe. We're really close anyway. But what an enormous and wonderful responsibility! To name a human being! I know people have been doing it for millennia, but wow! What pressure! I mean, this girl is gonna have to live with this name, for better or worse, her entire life!

Hmm. Wait a second. There's an idea. How about Millennia Stafne? Maybe not. We've more or less ruled out the really 'out there' names. No Moonbeams, Stars, or Uniques in this little family. Cool ideas perhaps, and most parents like the idea of their kids' names being different, but if your experience as a kid was anything like mine, you don't necessarily want to stand out that much. A bit of familiarity goes a long way toward making friends and avoiding the wrath of the mean kids.

But on the other hand, I had 3 other Scotts, including my roommate, on my freshman dormitory floor in college. Talk about confusing. It's not that I don't like my name mind you, but it was much easier for people to just call me Staf. Or Big Staf. I know dad was called Big Staf a bunch growing up. Makes sense. He's big. His youngest brother was Little Staf. He's a bit shorter. Nicknames are great. I've had my share of good and bad. Kids used to tease me with 'Buzzy' when I was a kid, because I had a pretty short haircut. I didn't care for that one much. In college a few folks called me 'Iceman' because I was cool under pressure during a big test. But for the most part, if I'm not 'Scott', I'm just 'Staf' or 'Stafne'. Although lately 'Staf Infection' has been making a comeback with a few of my friends. But please folks, don't jump on that bandwagon.

So yeah, nicknames are certainly a consideration for us in picking out a name. Based on our observation and reading, seems many parents are insisting on their kids being called by their full name. Michael, not Mike. Jonathan, not Jon (Ha! Sorry Jones). Fonzy, not The Fonz. Oh wait, I guess he was Arthur Fonzarelli. Art or Arthur just wouldn't have been as cool I guess, even though I like the name. Anyway, for the most part, we haven't liked too many names that have obviously undesirable abbreviations or nicknames.

The way a name sounds is important of course. We pretty much ruled out Stephanie and Daphne right off the bat. Daphne Stafne would be bound to provoke some astonished looks from other parents. We love our little girl too much to put her through that. I just really hope she likes the name we decide on. She might not. For some reason, I really preferred the name 'Steve' when I was a kid. Again, it wasn't because I didn't like my name. I think it was about the time Steve Austin, the Six-Million Dollar Man, was so popular.

And what about initials? Many of you are likely bored by the story I tell about how my name was originally supposed to be Andrew Scott Stafne. I'll let you do the math on that one. I'm just glad mom and dad realized and made the small but critical adjustment in time. We came up with a few names we liked for our little bundle of joy, but then realized her initials would have been ALS. At first I wanted to use one of them just to spite the disease. Not let it take the option away from us. It takes away so much already, etc. But I don't want our daughter's name to be associated with it in any way. She deserves as fresh a start as she can get. The only time the letters ALS will apply to her will be when I call her Adorable Little Stafne.

People also seem to think a name has to fit a person's personality. But how can you choose a name for someone who doesn't even have one yet? Girl don't even have a social security number yet and we're supposed to know if she's a Rachel and not an Olivia? Or vice versa? There is no hint hidden in those names by the way. But we have in fact ruled out a few names based on folks we've known that could summon less than ideal memories. I mean seriously, after Sandra Bullock's last few films, could you use her name for your kid?

I've tried testing a few names on her, by seeing if she reacts strongly by kicking in mom's tummy, but so far she seems to respond to everything. And "Sugar" or "Punkin" have been getting the most action. Probably not fair to name her that way though. You know, like telling her "well you picked that name!" when she complains about it.

So clock is ticking. Time is getting short to make our decision. Baby Stafne's current ETA is sometime before end of March. A wee bit early. I like to think that she's just really excited to see us.

Dead man walking

Many of you won't like the title of this post, but it's been squirming around in my head for some time now, and I really feel the need to let it out. I mean, here I am, diagnosed with a fatal illness, and I'm still walking. I'm still skiing. Still doing many of the things I've been doing all my life. But in the eyes of the medical community anyway, I'm a dead man walking. What an incredibly surreal feeling, almost like I just dreamt the whole ALS thing. Don't I wish.

What's really going on here is part of a somewhat unspoken debate going on within the ALS community. Should a person with ALS go around telling everyone that they're dying? Many say no. That because doctors have no way of telling us how long we have, we should assume we're going to live a long time. In some rare instances, people have lived up to 30 years with the disease. It's the 'your attitude is your altitude' way of dealing with things, wherein if you assume you are going to die, your body will find a way to make it happen. And if you keep a positive outlook, you'll live longer. And we do indeed see examples of this happening all the time, for most every disease out there.

On the other hand there's the medical data, which will invariably tell you that ALS is fatal, with death occurring 2 to 5 years from diagnosis on average. One article I read said that many people die within a year or two. And of course the tone with which such pieces are written is clear: sorry to say son, but you gonna die. So you tell me, how in the hell am I supposed to react to that? I mean, all the positive attitude in the world isn't going to save someone from getting rundown by a speeding bus is it? Some people have said, after reading this journal, that I seem to have a good outlook, that I seem to be dealing with things pretty well. On any given day, I'd like to believe that's the case. But I promised you brutal honesty, so I'm sorry to report that on some days I'm pretty much one wave short of a shipwreck. I'm terrified. I'm sad and depressed. I have serious doubts about having the strength to deal with it all. I feel like I'm about to go mad and I should just give up, give in to reality, lie down on my deathbed and wait for the inevitable.

But that's the irony here isn't it? In our dialogue about fatal disease, in our struggle between hope and acceptance, we seem to so often forget that death is inevitable. For all of us. It's simply a matter of how and when. So it's really a bit naive of us to talk about dying in such exclusionary terms isn't it? So and so has a fatal illness. The rest of us are fine. I mean, in reality, aren't we all 'dead men walking'? I see the pity in some people's eyes and I want to tell them to keep it for themselves. I don't mean that in a negative way. But having to stare down my mortality has caused me to notice how little others seem to acknowledge their own.

I of course mean no disrespect to those that cannot currently or have never be able to actually walk. It's just a metaphor for my situation that I've been brooding over for several months. One that usually gets stuck in my head and gets me down. On those bad days, and every day starts out seeming like it might be, when I look in the mirror and think "You're dying Scott", I hear this little voice in my head say "But not today." And I feel a little better. I just hope I'm not tempting fate by saying that!

Wow. Dear reader, I want to thank you for listening. Writing about this has really lifted a weight off of my shoulders. Today is a good day. Today I feel strong. Today I will NOT let my illness get me down. I will NOT give up on my life. I will fight with everything I have, and I will go to sleep happy and content. Dreaming of the arrival of my little girl. Of my beautiful wife. Of whatever time I am granted with all of you. I will live my life hoping for the best, even while preparing for the worst. There will likely be a day when I am no longer walking. And inevitably a day that I will die. But not today.

Let's make a deal

Have you ever wanted to be a paraplegic? Even a quadriplegic? Or to have HIV? Perhaps some type of cancer? I have.

Bargaining is something we all do, particularly when we're trying to deal with something difficult. We beg and plead with whatever powers that be to make it better, to make it go away, to make it anything, anything, other than ALS. And if such a wish is granted, we promise we will do everything we can to help the less fortunate, to give up our vices, to be better people. But in cases where things actually do get better, how many of us stay to true to our word?

Oddly enough I had already been doing some bargaining before my diagnosis. When we found out Kirsten was pregnant, I started to worry about things like Downs syndrome, spina bifida, and the myriad other things that could harm our baby. I distinctly remember sitting in my car, negotiating with God, that if anything bad had to happen to Kirsten or our child, to please take it out on me instead. Let me bare the burden. Little did I suspect that bargaining chip would actually be cashed in. So soon. With such harshness. While I certainly wondered, I don't honestly believe that God or anything else gave me ALS because of that bargain. But even now, I wouldn't take it back.

I recently read about a skiing accident in Colorado, which occurred during the same weekend I was out there. A man was back-country skiing with his 12 and 15-year old children. They reached the bottom of the hill and waited for their dad. He never showed up. He had fallen into a ravine and, buried in several feet of snow, suffocated to death. As I read, I had two distinct feelings. Sympathy for his family of course. And jealousy. I envied this man because he was allowed to know his kids for more than 12 years. I would give up a great deal for the promise of more time with my wife and daughter. I would have traded my fate for his in a second.

Don't get me wrong. I would never wish ALS on anyone. But I've spent a great deal of time realizing that there are very few diseases or disabilities out there that I wouldn't rather have. In another article I read, a doctor stated that of all the illnesses out there, pancreatic cancer and ALS were the worst. I suspect some folks might disagree. What each of us feels we could and could not deal with is relative. For myself, I'm inclined to agree. But at least there's one illness that I wouldn't trade for.

On the other hand, I wouldn't trade my situation for most of the folks affected by the tsunami. I wouldn't trade with the 5-year old child who has terminal cancer. Or a victim of the holocaust. Or even someone who lives a long life, but does so with constant hardship and need. Like I've said before, my life up to this point has been nothing short of wonderful.

Yeah, the 'grass is greener' philosophy is a tempting one. And useful in small doses. Helps you gain some perspective on your place in the world. To realize that you're not alone in your suffering. Or to appreciate what you actually have. Everyone has their problems, and to them, they can seem to encompass everything. Teenagers are the perfect example. But all things are relative. No matter what hand you've been dealt, chances are pretty good that a whole lot of people have had it better, and a whole lot have had it worse. It might feel like it sometimes, but nobody has the market cornered on pain and suffering.

And appearances can be so deceiving. How often do you pass a nice big house and think you might be better off there? That perhaps the family living there is somehow happier and more fulfilled than you? But are they really? Maybe a failing marriage, a chronic illness, or the loss of a loved one is dwelling inside. Or maybe they have the most god-awful wallpaper you've ever seen.

The point is, I'm trying so incredibly hard these days to keep focused on what I do have. What good things have come my way. And not on the things I'd rather and might never have. Last fall, if Monty Hall had come to me and said "Son, you can keep the life you have right now, with ALS, and trade it for what's in the box or behind the curtain", I may very well have made the deal. But the more I've thought about things, all the good things I've had and still do, I think my response would be "No deal Monty. You can keep your box. I'll stick with what I've got." I just hope I can keep up the strength of that way of thinking as time goes on.