At first, meeting Kirsten and Scott Stafne is much like calling on any young couple. As I approach their home on Garfield Street NE, I see Kirsten outside, dragging a garden hose around to water an abundance of flowers and plants in midsummer bloom. “Scott’s inside,” she says.
When he answers, I see a tall, lean young man who greets me with a friendly “hello” and ushers me inside. But making our way through the house, I notice that Scott uses a cane to steady his 6-foot, 5-inch frame. He explains to me that they recently, and reluctantly, put their home on the market because he has difficulty navigating stairs.
“We love this place,” he says, “but the stairs are a problem.” Settling onto the back deck, Scott matter-of-factly relays the details of what his life is like with Amyotrophic Lateral Sclerosis (ALS), also called Lou Gehrig’s disease. He was diagnosed with ALS at the end of 2003 when he was 32 years old, just three weeks after Kirsten found out she was pregnant with their first child.
ALS is a fatal neurological disease that currently affects about 30,000 Americans. The continuous death of motor neurons causes paralysis, so while the mind remains intact, the body progressively shuts down. Paralysis leads to muscle atrophy, and the body deteriorates until it can no longer function. ALS can strike anyone, at any age, and most patients die within four years of diagnosis. There is no treatment and no cure.
When I ask if I can tape record our conversation, Scott agrees and tells me that he’s always been interested in filmmaking. He says, in fact, that he’s been making a series of video and audio recordings of himself for his daughter, Eva, who is now 15 months old.
“I didn’t know exactly what to do,” he says. “There have been movies about the nature of dying and leaving a video legacy, and for the longest time I wanted it to be perfect. Now I’m at the point where I just need to get the stuff down. Anything and everything I can think of I’m putting down. I’ve been taping stuff about who I am, who I was—kind of a history—as well as more fatherly related things, things that I hope …” His voice trails off. “I’d love to think that I’ll be sitting there watching it with her someday, but if not, it’s sort of an insurance policy.”
Throughout the interview, Scott tells his story directly and without pathos, true to his stoic Scandinavian roots. “If you want waterworks,” he says, “call my mom.” He’s a realist with a touch of optimism.
“I’m going to be paralyzed in every way possible, including my speech and swallowing,” he explains. “Eventually I’ll die because I can’t breathe. On the positive side, I’m younger and it tends to move slower in people who are younger, although that’s certainly not a rule.”
The convergence of the Stafnes’ joyous and tragic events—her pregnancy, his diagnosis—hit hard. “I’d turned 32 in May , we found out Kirsten was pregnant in July, and then wham,” recalls Scott. “I still have this fuzzy memory of that time because your brain sort of shuts off and goes into shock mode.”
Now he says his daily challenge is to live in the moment and not dwell on the inevitability of the future. “I always tended to worry about the future and think about all I had to do,” he says. “The last few years I’ve had more of the notion of living in the moment and I’ve done some meditating. I’m far from mastering that, but the illness has made it more urgent.
“The strange thing is, [mine] is like everybody else’s life in a way, just amplified. There’s a time crunch, there’s a ‘do it now, don’t wait’ urgency. I realize now that there will always be a list of things to do and that the list will never get done, even if you live to be 100 years old. I’ve learned that it can’t all be about laundry and practical stuff—you have to put the good stuff on the list and it’s got to include life goals.”
While his priorities are spending quality time with his wife and daughter, Scott says he’s also interested in traveling and screenwriting.
“When I was diagnosed, I immediately went into the mode of ‘don’t talk to me about two days from now,’ because thinking about the future was too painful. But in the last few months I’ve opened up a little more. I’d love to go on an Alaskan cruise, or go to Norway. I would like to take up screenwriting. It’s a version of my voice, and it’s one thing I can do even if I am paralyzed. I don’t think a lot of my interests and goals have changed all that much, it’s just needing to be a little more realistic and plan ahead.”
Scott left his job in the computer industry last November. He says fatigue forces him to sleep 10 to 12 hours a day, but when he’s up, he devotes himself to his family and finds time for personal journaling and public blogging. He also dedicates much of his time to fund raising for ALS. In 2004 he and Kirsten established the Scott Stafne ALS Research Fund to support the ALS Therapy Development Foundation—a nonprofit biotechnology company in Cambridge, Mass., that is focused on treatments for patients alive today. The fund has raised more than $31,000, and its goal is to hit $100,000 by the end of this year.
“The cause chose us,” he says. “Our biggest motivation for getting involved is that we’re sitting here with all this pent-up emotion—anger, frustration, whatever you want to call it. We took up the cause for ALS because I have a self-interest, but it’s pretty unlikely that it’ll help me in my lifetime. At the same time, there’s a chance, and it helps us focus our energies on something positive. We also feel an obligation that if we don’t do this, who will?”
Scott says that because comparatlively few people have ALS, much of the research and development is confined to academic institutions. “ALS is an orphan disease,” Scott explains. “You’ve got university research that takes a very structured approach, has limited money and works at a snail’s pace. On the other side you’ve got drug companies that won’t touch it because they don’t see it as a profitable disease.”
How to cope?
Kirsten joins us on the deck. Her demeanor is as calm and direct as her husband’s. When asked about how her life has changed as a result of Scott’s illness, Kirsten, who works full time, explains that it’s difficult to distinguish between her caretaking duties as a wife and mother. “We really don’t have a good way to differentiate between what having a baby is like versus what having ALS is like, because both happened at the same time,” she says. “I feel like I’m in survival mode a lot of the time, just getting through the week and making sure everything gets done.”
Attending monthly support groups helps, she says, as does having close family members, friends and a wicked sense of humor.
Scott also said that living with the disease becomes part of life’s routine. “I’ve surprised myself,” he said. “If somebody would’ve asked me even a couple of days before [the diagnosis] what would you do, I’d have been like, ‘I’d fall to pieces’ or ‘I can’t live with that, no way.’ And here I am, contemplating life as somebody who can’t do anything but try to communicate with the world, and even that is threatened, short of dying.
“Just the notion that I’ve opened and expanded my own range of what existence can be and what’s acceptable has opened my eyes to the reality of how the world really works. I’ve found that we have more strength than we gave ourselves credit for, and at the same time, what choice do you have? You either find a way to deal with it, or you shut down.”
Kirsten agreed. “What Scott says is really true,” she said. “When people say, ‘I could never do that,’ I always say, ‘Well, you’d do the same thing I’m doing, you just deal with it.’ You do what you have to do because you don’t really have any choice.”
Both agree that Eva keeps them focused and grounded. “I always struggled with finding fulfillment and identifying my life’s purpose,” says Scott. “I’d always wanted to be a dad, but once that reality comes true, it’s all you can think about. The biggest shock about being diagnosed was that I finally figured out what I knew I could be good at—being a dad—and here it’s potentially going to be taken away from me. That, to me, is the hardest part of it all. I think I could ultimately come to terms with dying early, or death in general, but that’s my day-to-day obsession. Am I going to leave my child without a dad before she’s 5? I’ll try to do what I can through the legacy, but I know that’s not good enough, it’s not a replacement.”