Rain or shine

Living in Minnesota means not only dealing with a bunch of weird and nasty weather, but talking about the weather ad nauseam as well. We stress about it, predict it, plan for it, and inevitably curse the local weatherman when his or her forecast is the polar opposite of reality. And then we comment on how good or bad the weather is to make small talk with complete strangers. I swear, if I had a nickel for every time I've heard the phrase "cold enough for ya?", I'd have a second house in Hawaii.

And so it came to pass that, last weekend, we rode the emotional rollercoaster that is Minnesota weather, hoping that the latest prognostication of cold and rainy would turn out to be wrong yet again. Saturday we awoke to rain and wind, not a sunbeam in sight, and ventured out to a fundraiser walk for the ALS Association. It rained most of the way there and throughout registration. And then it stopped. For most of those who walked the 3-mile route around Lake Harriet in south Minneapolis that morning (I waited in the bandshell), hardly a raindrop befell them. We had been spared.

But our ride was not yet over. We listened to the rain on our roof throughout Saturday night, silently praying that the clouds would blow themselves out of town by morning, in time for our first golfing fundraiser to benefit the ALS Therapy Development Foundation. When the alarm went off, it didn't look good. Gray, overcast skies everywhere. But low and behold, we were again spared the wrath of Mother Nature. The clouds stayed throughout, but the day turned out quite nice, all things considered, and our golfers stayed dry. Well, mostly dry. The course itself was a bit wet, which simply made for a more challenging round. Ain't that right Patrick and Frig?

It is here that I must pause to give a most heartfelt and appreciative 'thank you' to all who participated, in both events, and especially to those who organized our golf tournament. To Tom, our sponsor, and the rest of the volunteers from Techware, and to my family and friends, thank you so much for making it all come together so wonderfully. We had a great time. And more importantly, we gained a renewed hope for our future. Thank you all for the generous giving of both your time and money. The funds you have raised will bring us one step closer to a cure.

Frankly, I think in some ways the weather this past weekend was perfect. Easy to say perhaps since it turned out much better than was predicted. But it helped remind me that, while we can certainly hope for sunny days ahead, we must not let the weather dictate our emotions. Our happiness or sadness. Like my illness, we have virtually no control over the weather, and so many other things in the world.

Indeed, I think the variety of cold, hot, dry, humid, cloudy, sunny, rainy, and snowy days we experience only adds to the rich tapestry of our lives. We must prepare for anything to be sure, especially in a state that sees a 130 degree temperature fluctuation throughout the year. But we should get up, each and every day, and look out the window with anticipation, in awe, to discover what nature has in store for us, with our goal to make the most of the hand we've been dealt. All the while knowing that, if we're fortunate enough to be granted another one, the next day will bring something new. Something different. And like everyone's favorite gourmet restaurant Arby's likes to tell us, "different is good."

Believe it or not, I've come to love cold weather. I mean, you can't possibly know how good it feels to come inside and warm up if you didn't have borderline frostbite in the first place can you? I think growing up with Minnesota weather makes you a bit tougher that way. I hope it will help me weather the storm of my illness as well. But who knows, could be that part of my brain was frozen since birth and I'm just deluding myself. Regardless, no matter how overcast my emotions might get, I intend to get up and enjoy each and every day I'm alive. Rain or shine.

Hat in hand

Ok, so we've established that I've got some anger and other emotional issues to work through. But as most people going through difficult times figure out sooner or later, there are certain ways of coping which are healthier than others, for everyone involved. Part of how I am learning to deal with my emotions, my anger, sadness, and fear, is to do something proactive to address the situation.

To that end, my family and I are embarking on a new mission in our lives, to raise both awareness and funding for ALS and the organizations that fight to find a cure and support families like ours in dealing with the day to day effects of this horrendous disease. In fact, we set out on this mission the very day I was diagnosed. Like most of the world, we were largely oblivious to what it meant to have ALS, much less what it stood for. And, like many of those afflicted with illness, we've decided to dig in, learn more, and stand up to fight with those already in the battle.

I won't claim my motives are completely altruistic. I wasn't doing anything to help this cause before I was diagnosed. My family and I have an obvious self interest in getting the word out, in bringing together resources that may one day help me. But again, like many others, I've learned that just joining the fight for a cause that you believe in, regardless of whether you live or die, is perhaps the most important contribution you can make to the world. A treatment or cure may not come in time for me. But I intend to do my part to help move us forward, to the inevitable day when someone will walk into their doctor's office to find out they have ALS, and instead of being told to go home and die, they will hear "We can help you with that."

It is estimated that more than 250,000 people alive today will one day die from ALS.

Perhaps it's not such an 'orphan disease' after all. But as long as it is in the eyes of the government, it will take the good will of a network of families and friends to make progress. As my friend Jamie at the ALS Therapy Development Foundation commented, we could probably cure this disease with the yearly marketing budget for Viagra. But in our free market, consumer-driven economy, it's a monumental uphill struggle to gather that kind of funding, especially when it won't immediately make somebody happy or fill their cup. As I've said before, in today's world, money is life.

And that's unfortunate for me. As a stereotypical Scandinavian, I'm typically loathe to ask people for help, much less money. In fact, you could say I hate asking for money. I used to do the MS 150 bike tour with my own money sometimes, because I didn't want to bother other people with 'my cause'. But I'm desperate. All families coping with ALS are. It has become our cause. And we need help.

So I'm learning how to swallow my pride and put myself out there, to ask not only for money but for support, in any form possible. Awareness will mean that one day a person can say "I have ALS" and the listener will not have a blank stare on their face. They will know what it means, and the mountain that person and their family must climb. That kind of awareness will lead to money, where eventually enough people will decide this is a disease worth our hard earned money to cure, and we will reach the peak.

As with any mission, you need to get specific to make anything happen. "First things first" as they say. My mom's company Techware is organizing a golf tournament this weekend to raise money for ALS TDF. We're participating in a walk to benefit the ALS Association. I'm going to give a little speech for a Muscular Dystrophy Association fundraiser in Brainerd. All 3 of these organizations are fighting to help me and my family, and we seek to help them in return. As always, you can keep track of our efforts on our website (www.stafnes.com/als).

I stand before you hat in hand. Not looking for a handout like a beggar on the street, but rather with my head bowed, humbly, asking you to join my family and all of the other families engaged in this fight. One day there will be a party, to celebrate our victory over ALS, and to remember those that have gone before to pave the way. You will be invited to this party. But until then, please know that you will have a most profound love and gratitude from me and my family.

Clinically sleeping

Lie still with eyes open. Now eyes closed. Look toward your forehead. Down to your chin. Look left. Look right. Left again. Right. Now look straight ahead and blink slowly 5 times. Good. Now grit your teeth.

I performed that calibration exercise about 427 times, maybe even more like 431, over the last 2 days, as part of a sleep study I undertook to try and discover the cause of my fatigue these past several months. Essentially, the doctors were looking for any 'sleep disordered breathing', such as sleep apnea, which might account for my lack of productive sleep.

Showed up at the clinic at 7pm on Tuesday evening, at which point they immediately started attaching wires to my body, a process which took close to 2 and 1/2 hours. No lie, I must have had like 427 wires, maybe even more like 431, attached to the many varied and sometimes hairy components of my anatomy. Wires were taped to my legs, my chest, my arms, my neck. But wait there's more! They glued, actually glued about 15 wires to my head. On top. Behind my ears. On my temples. And even to my chin, which more or less required a full bottle of Elmers or whatever that toxic compound was, due to my suddenly regretful lack of shaving over the past year. About the only spots I didn't have any wires attached were Those Places Which Must Not Be Named. You get the picture.

So there I lie, watching TV, waiting to get tired, in my own private room, which I assumed would be decorated in some late 80's style 'cozy wooden unthreatening outdated hospital' look, you know to help people feel like they could actually sleep there, but which was instead decorated with the standard 'cold and colorless sterile laminate which shall never, ever be updated for insane patients' motif. Not quite as sleep inducing as I imagined anyway. But extremely clean nonetheless.

When I finally think I have a chance at falling asleep, I alert the 'sleep tech' and she comes in to hook me up to the various blinking-lighted apparatuses (apparati?) next to the bed. She puts some kind of tubing into my nostrils which must have measured something, but presumably not nose hair, which would surely have overloaded the poor machine (I'm like my grandpa that way). Then I do the whole 'eyes open, eyes closed' calibration thing and she turns out the lights, leaving me to try and get comfortable with 431 wires and tubes for bedmates. Oh, and a video camera recording my every 'move'.

Fortunately, they let me take my regular sleeping pill, without which I'd have become a rather tall and twitchy zombie, so I fall asleep within 20 minutes or so. Only to be woken up by another 'sleep tech' who asks me to try sleeping on my back. I fall back asleep, woken up again sometime later by loud voices in the hall, with a searing back ache and an urgent need to use the bathroom.

The sign in the hall which reads "Quiet Please! Sleep study in Progress!" has apparently become ineffective as a means to remind the staff that others are trying to sleep with 431 wires and tubes glued to their skin and a video camera taping them for the inevitable revival of Candid Camera.

And because I'm essentially a cyborg, plugged in to thousands of dollars worth of immobile equipment, I need someone to help me out of bed. There is a microphone directly above me on the ceiling. Tentatively, I call out 'I need to use the bathroom'. No response. I say it again, a bit louder this time. Nothing. Surely the partygoers in the hallway are not too busy to help a brother take a leak? I sit there, hoping against hope that I won't have to wet my bed on camera, probably getting electrocuted by the 431 wires attached to me in the process, and thanking God none of them are attached to my, well, you know, when finally I see a call button thingy hanging behind me on the wall. I press it, and yet another new face arrives to save the day.

In the morning, when I finally wake up around 10:30am, the doctor comes in to tell me the good news. I have no sleep disordered breathing. I feel disappointed. Not because my breathing is ok, but because we have yet to find the cause of my fatigue. The doc proposes doing a nap study that day, where I will be recorded trying to fall asleep for 20-30 minutes every 2 hours, looking for the unlikely case of narcolepsy, which I was quite certain involved sex with dead people, but was apparently mistaken. Thank goodness.

Anyway, I tried taking a nap 4 times during the day and didn't fall asleep once, so they let me go. Boy was I glad to go home and see my wife and daughter, without the 431 wires, without the cameras, and sleep like a baby.

snafu

I have a confession to make. Despite my initial promise, I have not been completely honest with you. As most of us do, I have filtered reality a bit when sharing my thoughts. I haven't lied, but I haven't been entirely forthcoming as I set out be. My writing thus far has certainly included some heavy stuff. Hinting at or flatly reflecting the typical cycle of grief that we human beings tend to go through (denial, anger, bargaining, depression, acceptance). But for most it, I've been making a conscious effort, both for myself and for my audience, to come across as positive. As hopeful. Maybe it's worked on you, or maybe it hasn't.

The cold hard truth is, on many days, living with ALS just plain fucking sucks. While everyday I really do in fact appreciate what I have, recognizing my good fortune in the world, I still need to deal with the illness. Comparing my situation to others can help, but it only goes so far. The bottom line is I still have to get up every morning and face the reality I find myself in, good, bad or otherwise. I strongly suspect that even those such as Christopher Reeves, who projected a great deal of strength and resilience, still had incredibly dark moments.

To some degree, I've avoided writing about them. And I don't want to focus on the negative going forward. But I'd be shortchanging myself and you if I didn't admit to being tempted by the "dark side of the force". Fear, confusion, despair, anger. And not just anger. Some moments, perhaps when imagining my daughter growing up without me, I feel an outright fucking fury. I have felt a rage inside of me that would rival a hurricane, and I shudder to think what I could unleash on those around me, especially those that I care most about. It takes all the will I can muster to hold that shit back sometimes. And sadly, I haven't always succeeded. Fuck.

I trust you'll forgive my choice of words if you find yourself sensitive to them. But I'm not apologizing. Bad words were invented to deal with bad situations. And lately I just haven't had enough sugar handy to coat what often feels like a shitty situation. Besides, I've got bigger fish to fry than worrying about sending a few naughty words airborne here.

Some people have commented to me or Kirsten that I seem to be handling things well. On some days I really do feel that way. I even allow myself to be a little proud of how I'm dealing. But it's not an all or nothing game. Every day is a rollercoaster, one minute feeling denial, like perhaps this isn't really happening to me. The next minute I'm angry. Rage for the way our society treats people with disability, how we spend our money on frivolity, the incompetence of our health care system (not necessarily the doctors, but certainly the administrative nightmare). And the next minute I lose all sense of hope and fall into despair. I become overwhelmed by my physical weakness, by my emotions, thinking about dying young. I just want to curl up into a ball and cry. Later I feel a sense of hope and appreciation, perhaps even acceptance, creep back into me. And the cycle goes on like that, day in and day out.

My stated intention to focus on the now is true. But while I may have done well at talking the talk, I have really struggled some days at walking the walk. I don't want to show weakness or struggle. I want to inspire and not make people worry. And above all, I don't want pity. But it's really hard, at least for me at this point, to spend every minute appreciating every damn second. Especially these past few months, with the fatigue I've been feeling. My ability to deal seems directly proportional to my energy level.

It's only natural to go through this cycle I suppose. Healthy in fact, to process the natural emotions that come with facing a fatal illness. It's a learning process and I truly believe I will get there. I have to. But I'm still learning to fall. So I trust that you will have patience with me if I need to vent here sometimes. To feel despair and depression and let down my guard.

Military folk are familiar with bad situations, most far worse than mine, and they have a saying to describe them: FUBAR. Fucked Up Beyond All Recognition. That's exactly how our lives how felt last fall after the bomb was dropped. But be that as it may, we often talked of how we would someday find a new normal. A certain comfort in our new, less than desirable situation. And I think we've reached that point, turned a corner so to speak. But we're still stuck on the rollercoaster, unable to get off.

Now that we've adjusted a bit, I think a another term the military likes to use applies: SNAFU. Hopefully you know me well enough to realize I can write that with a bit of a wry smile on my face. I'm not being fatalistic. Just realistic. And that's how things sometimes feel these days. Situation Normal - All Fucked Up.