Love and vengeance

Walking with Jane started as a labor of love and vengeance a bit over four years ago. My wife was dead at the hands of a disease that no one seemed to know anything about and that almost no one seemed to be doing anything about. A zebra had killed my wife–and no one seemed to care outside of a small circle of friends.

People’s lives depend on it.

Walking with Jane really started at 30,000 feet a few days after we buried Jane. My youngest brother convinced me staying home alone over Christmas was a bad idea, so I found myself on a plane to Seattle to spend the holiday with my father, who had lost my mother to Alzheimer’s barely 11 months before.

Opening movement

I wrote the first draft of a pamphlet on NET cancer and IBS that night and began making notes on creating a foundation to raise awareness and money for NET cancer research. By the time I returned home,  I had set out on paper the basic goals for that organization and finished the second draft of the pamphlet. The pamphlet went off to Jane’s oncologist, Jennifer Chan, for her comments.

A zebra had killed my wife…

The notes on the foundation went into a drawer. We were a few weeks from final exams and I had a backlog of papers to grade that felt about a foot high–and probably was. Then there was a new semester to start and my own grief to deal with as the shock of loss began to wear off. No one tells you that the real grief finally arrives for the spouse just about the time everyone else recovers. They think you’re fine just about the time you discover you’re not.

Second movement

Walking with Jane started as a Relay for Life team that needed a name. I’d planned to go to a Relay and just walk all night. Friends and students decided this sounded like a suicide march and suggested forming a team to support me–and keep me off the track enough that I wouldn’t be dead by morning. Once we had a name, we needed a logo for the t-shirts I wanted our team to wear.

The notes on the foundation went into a drawer.

Morgan Bozarth, an art teacher who was the last person Jane served as mentor for, found a student who wanted a project. Bonnie Cohen took a photograph I had taken of Jane in the Blue Hills one summer and spent a few days sculpting the logo that adorns not only our t-shirts and this website, but lots of other stuff as well.

Third movement

I knew one key to success was to have a fully functional, modern website. In May, I asked Carissa Broadbent, who ran our school newspaper website and was setting up her own design business, what it would cost to get her to create walkingwithjane.org. She wouldn’t let me pay her for it.

…this sounded like a suicide march…

We launched this website four years ago tonight–on what was the 22nd anniversary of the day Jane and I got married. I wanted something positive to happen on that date in 2011–something that would help me get through what I knew would prove an insanely difficult day emotionally. I have wondered about the wisdom of that decision since.

Creating value

I also wondered for a long time about the wisdom of even having a website. Walkingwithjane.org requires a great deal of care and feeding. And for a long time we had real difficulty attracting an audience beyond the constant attacks of spammers. For the first 2.5 years, we had trouble drawing flies.

We launched this website four years ago tonight…

Part of that was developing an identity that worked. I’ve never been a NET cancer patient–I’ve been a caregiver and a grieving widower. I’m not a scientist. I’m a writer and journalist. For a time, the site was too focussed on my grief and anger. There was an audience for that–but not the audience I really wanted to aim things at.

Understanding audience

Then, about 17 months ago, a patient asked a really difficult question: How do you prepare your spouse for the day you will no longer be there? What had Jane and I done to emotionally prepare me for the day Jane was no longer there? Somehow, her question gave me an understanding of the patient side of things I had not had before. And from that moment, the site took off.

I’ve never been a NET cancer patient…

Over the last four years, walkingwithjane.org has attracted 52,885 views. In the last 12 months, we have had  23,319 views of items on this site from about 8000 different visitors. That’s an average number of hits per month of about 1940. We have become a goto site for trusted information written in layman’s language about NET cancer. That was one goal I set on that airplane coming back from Seattle on New Year’s Eve in 2010 less than three weeks after Jane’s death.

Love and vengeance, redux

I wish I could say everything has worked out as well for the other goals I set over the week I was in the Northwest. Raising the money it will take to kill this disease is proving a much harder knot to unravel than I anticipated. But we will figure that piece out as well. We have no choice. People’s lives depend on it.

That was one goal I set…

I am no longer in this fight for vengeance. I’ve met too many people afflicted with this foul thing. I want them to live. I want them to have the time together Jane and I lost on that cold December night in Boston. It’s not about vengeance. It’s about love. We’re going to kill this thing.