Field Notes

Why I walk: fighting ALS and working for a cure

Why I walk: fighting ALS and working for a cure
John Solomonson and his brother, Paul.

Sunday was one of those days that convince people Portland is a grey, miserable city where people exist in a bubble of rain.

It was coming down straight, sideways, at times hitting puddles so hard you would not have been blamed for thinking the rain was coming up from the ground. It was not pleasant.

And yet, for several hours, I was among some of the most pleasant, content people on the planet.

It was the annual walk put on by the ALS Association of Oregon and Southwest Washington.

I was there, as I have been the past several years, to support my father-in-law, John Solomonson.  He’s the reason I moved to Oregon.

It was about six years ago and John was visiting us in New York. We were down by Wall Street and he slipped off a curb. For a long time we looked for answers, none of which were ALS. After all, it is not a disease people think of because no good can come from it.

Also known as Lou Gehrig’s disease because of how it killed the Yankee great, ALS robs people of their ability to move and in many cases, their ability to speak, to swallow, eventually, to breathe.

Every 90 minutes someone is diagnosed and every 90 minutes someone else dies.

On a regular basis, we get emails from the ALS Association with a subject line reading: sad news.

These notes always leave you in tears.

We hear about Karen “who had a bright smile and was a lovely person with a great sense of humor.”   We learn that “it is with continued sadness that I need to let you know that Marilyn passed away” and how she valued the “friendships she made” at support group.

There was Larry who “was not in distress or any discomfort. He was always willing to share and support others.”

We heard about Linda who “had a bright, positive and practical outlook on living with ALS.”

We heard about Harper who “was an incredibly physically capable man who loved the outdoors, building with his hands, playing sports, developing his career as an architect, being amongst friends and strangers alike, and the prospect of being a dad.”

The thing that is common in all the notes – in every note we get – is that no matter how sad the news, we are always reminded of the person’s positive attitude. And that brings me back to my father-in-law.

Not a day goes by I don’t think about John and how he copes.

He is a man who grew up on a farm in North Dakota, served overseas, traveled, raised three wonderful kids and now lives his life in a wheelchair. And he has a more positive outlook than many people without a fraction of his troubles.

I’ve had my own share of things I’ve had to deal with recently and it’s easy to let yourself get bogged down. And then I think of John and realize I need to stop being stupid.

There are many things he has taught me, from coping with stuff to a love of the outdoors and of national parks. If someone had told me ten years ago that I would geek out on my Passport to the National Parks and trying to collect as many stamps as possible, I would have laughed.

There he was on Sunday, wrapped up in jackets and a poncho, racing along in his chair at a pace none of us could really keep up with. One of his brothers had come in for the walk.

And he was one of thousands.

As much as it rained, their attitude kept everyone going.

The ALS Association has been here since 2002 and it is really impossible to overstate the role they play for families.

There are so many things they do, from loaning medical equipment to families denied by insurance to working with caregivers, doctors and nurses about how to provide the best help possible.

Nothing, though, is as moving and dramatic as the monthly support group where a couple of dozen people gather to show each other that they are not alone. It is hard to imagine anything more inspiring.

There is no cure for ALS.

It strikes seemingly randomly. Patients are usually between 40 and 70; the average age is 55 at the time of diagnosis though there are plenty of patients younger than 40.

Half the people diagnosed live less than three years which, of course, means half live longer. Ten percent live more than 10 years and then there are people like Stephen Hawking who has lived with it for decades.

My father-in-law has me believing anything is possible.

And that's why I walked on Sunday. And why I will always walk.