Monday, August 22, 2016

Not the blue sky, the grey one

I did not have my phone in my pocket on Saturday morning as I looked out at the grey horizon, the grey clouds, the grey lake. So I did not take a picture to contrast with the photos of blue waves and pink sunsets from earlier in my week on the rocky shore on the west side of Washington Island, Wisconsin. But it is that grey shore, the grey sky, the grey water that I have tried to hold in my mind as I journey back from vacation to daily life.

Grey comes in many shades of dark and bright, in the depth of the distant drizzle and the darker rainstorm moving west with the wind, in the mottled rocks and the active waves. It becomes part of your very gaze. It is the peaceful light cast on your retina, the panorama encoded in the neurons of your brain. It's restful, it's focused. It is breath and air and Spirit, calm and active in the midst of all that lives between heaven and earth.

My breathing is calm and shallow as I think about it. This moment, that moment, and the next one, the next one. They curl into this one, observed and treasured, and carry me into tomorrow. I hope.

I looked and looked and shed a tear or two, then got in the car on Saturday morning and drove home. After a stop for breakfast and a rain-soaked ferry ride, I took a few minutes to reset my daughter's Facebook password while parked outside a fancy kitchen-goods store near Ephraim in Door County. We got French fries at McDonald's in Sturgeon Bay, and later, filled the gas tank north of Manitowoc. Hours later, after the last few agonizing miles of city traffic on Cicero and North Avenue, we pulled up at the curb by our own overgrown backyard and were drenched by another downpour while unloading the car.

For two nights now I've woken up at three or four and listened for the waves and the wind. My imagination is that good--I seem to hear them as my worries seek the comfort of wind and intimate water.

This moment, and the next one. This.

Monday, August 08, 2016


I saw the movie "Gleason" yesterday at the Landmark Cinema on Clark Street in Chicago. I went with two dear friends, who sat, protectively, one on either side of me. Given that it's a movie about a young man's fight with ALS, and my own son, 29 years old, is also battling ALS, I had to steel myself to go. I was afraid of feeling very bad afterward, but that's not what happened.

There's a lot of hard stuff in the movie. ALS takes a lot of stuff from people (including their modesty). It's a disaster that happens not just to individuals but to friends and families—spouses and parents and  children. And the movie shows all of this honestly--in caregivers' exhaustion, altered relationships, constant fighting to hang on to meaning. Chances are, if you see it, you'll cry, and it may be that where you cry might have as much to do with your own life and where you're hurting, as it has to do with Steve Gleason and others with ALS.

In the end, I walked back to the car, through the maze of urban theatre ramps and stairs, feeling exhilarated. It's not that I've survived the challenges of ALS, and certainly I know that the pain and fear my son and his wife face daily are much greater than my own. But there's something about being knocked back on your ass that brings life and love into focus. Go see the movie and be reminded of what it means to be human and just how sweet that is.

Choose your slogan—#nowhiteflags, #kissmyals, #speed4sarah, #gronksgrace, so many more. Do an Ice Bucket Challenge, participate in an ALS Walk, or just make a donation at or the ALS Therapy Development Institute. Because we have to beat this thing someday. But meanwhile--go see Gleason. You'll be glad you did.