Where did you grow up? Central Wisconsin. A small town called Weyauwega.
When did you come to the Twin Cities? I went to college in Eau Claire. Afterward I went out to the East Coast for about three years, but I had always planned on coming back to the Midwest.
What did you study? Computer science.
Where were you in the intervening years? Connecticut.
What were you doing out there? Programming, software engineer. Starting my career.
Why not Silicon Valley? I think Connecticut was the biggest offer I had. [Laughs.] There are certain things in my life that are fairly practical. People are like, “Oh, you were seeking your path.” I say, “No, I went to the career office and asked what has the highest job placement and pays the most.” Fairly shallow . . . but, you know.
Or practical. What did your parents do? Were they practical people? My mom was a nurse, which I always thought of when bringing this together.
She must’ve loved this. She did. She had a CaringBridge site.
You talk about that in your book. She loved having a website. That was very early on. And that really started to galvanize this.
Caleb was 7 months old when he was diagnosed with leukemia. His parents, Meghann and Derek, christened him “Caleb the Incredible” and adopted his voice for their CaringBridge journal entries throughout his recovery.
You talk about losing your mom in the forward. She still lived in central Wisconsin. But she came here for her treatment and stayed with me, which was fantastic. Where CaringBridge really helped was a lot of her connections and support group was back in central Wisconsin, but they could connect through her CaringBridge site.
So ladies of a certain age can figure this out? Oh, yes. I kinda have this tagline in my talk: “It has to work for Aunt Betty.” That’s the bar.
What about your father? My father passed away when I was a senior in high school. He was 46. I was 17. He died of a heart attack. It was obviously sudden. There one day, gone the next.
What did he do for a living? He did a variety of things. He was the entrepreneur in the family. Never met a deal that he didn’t like.
One of the things in the book that I like was the effort to preserve the storyteller’s voice. In fact, it’s so different from chapter to chapter, it takes a couple chapters to get the flow of the book. There’s the couple with the sick 1-year-old who decided to use the baby’s voice for their CaringBridge voice. Caleb the Incredible. That really drew us to that story, the way they used Caleb as the voice of the community. And what’s also really rewarding with that story is that the husband and the wife would communicate to each other through the CaringBridge site.
This book demonstrates how social interactions can be fulfilling or draining depending on the timing. Especially the telephone, which has an insistence to it that can be very disruptive. Yes. And retelling the story is extremely draining. It’s like coming back from vacation. You tell the first person a little bit more, but by the fifth time you tell the story, you’re not talking about it very much. Telling the story about getting sick over and over again can actually make you more ill.
Along the way, some of the things you learn begin to crystallize into a pedagogy. And there must have been benefits that you didn’t anticipate. The thing that happened with the story of Carrie Murchison, who had to fly across the country to receive treatment and relied on CaringBridge to update her friends across the country, is that she couldn’t call everybody, and everyone was getting the wrong information. It was literally the game of telephone. Everybody needed to find out what was going on as soon as they could and they needed to hear the story once. Some of the wow factors were how people shared. Like you were saying, you were surprised at the way the people shared. The other wow event was when the first CaringBridge subject, Brighid, died. We came together for the memorial service and everyone was already connected at just a whole other level. The other early event was my grandmother, who was 94 and had a quick end-of-life experience. She had a CaringBridge site. And then my mom’s experience. It was a firsthand experience of being able to bring a community together. That’s the other aha. It’s not just about the patient—it is about them; it helps them—but it also helps that entire community.
The I-35 Bridge Collapse.
On August 1, 2007, Paula, her husband, Brad, and their girls were crossing the I-35W bridge when it collapsed. All of them were critically injured, but Paula’s injuries have been the most challenging: a brain injury and a crushed L1 vertebra. “Advances are tiny and, fortunately, cumulative. Setbacks are depressing. Patience is the mantra.”
Before the Internet, we struggled relating one-to-many. One-on-one we’re great, because that’s how we learned—looking at your mom’s face as a baby. We get a lot of practice one-on-one. But these social networks are tools that can help us get better relating one-to-many. Yes, they are. And I think actually as a whole society the way we view death and dying is changing and evolving. And I think CaringBridge is a part of that.
How do you mean? Heck, 30 years ago you wouldn’t even talk about it. You would just find out that Uncle Ralph died. You wouldn’t even know that he was sick. Where now you want to help him during that journey or you want to provide support during it.
Or support the people he’s leaving behind. Now you know what’s needed. The other thing that being able to connect through a community like CaringBridge has really changed is that a lot of times when someone would get ill or something would happen, you actually would stop connecting with them because you didn’t want to bother them. You didn’t know what to say. There was this barrier that was suddenly put up that would decrease the support that you would actually get. Well, not only does CaringBridge help that, but it actually compels people to connect and be involved. Because they see others and they know that they’re not bothering them and there’s a community now. That’s probably one of the biggest ahas over the years—it just compels people to come together. It removes barriers of not knowing, of worrying about being a bother, of not knowing what to say.
The War Injury.
Cory was an Army Ranger deployed to Afghanistan during Operation Enduring Freedom when one of the soldiers in his unit stepped on a 500-pound IED-force bomb. Cory was found lying facedown in a canal, alive but with a skull fracture, a penetrated eye injury, collapsed lungs, and burns.
You’re providing a service for these communities, and I’m not begrudging your ability to make money off this service, but how big is your company? How many employees? About 55.
And it’s a nonprofit, correct? Yes.
Let’s talk about your administration costs. Let’s back up a little bit. The idea of ads infused in this environment just never made sense to me. But ad revenue or selling data are the financial models that still are number one within the Internet. So for the first four or five years it was just subsidized by my home business. I just knew it was making an impact and it made me feel good.
You had a full-time gig?Yup, I had a consulting business at the time. I was doing webpage design. I was consulting in the area of technology. I helped start up another company. I was burning the candle at both ends.
Do you have family of your own? I do. I have three sons. And I was married at the time.
How old were the boys when you started? My youngest was 3 in ’97. So 3, 6, and 8.
When did you decide to go all in? Right around 2000 I knew something had to give because it kept organically growing. I’m more of a technologist—not a marketer—so there was no marketing going on. It was just word of mouth. It was helping people.