I first met Bruce in August 2014 in a parking lot near the base of Mt. Baker, a 10,781’ glacier-covered volcano just south of the Canadian border in northwest Washington.  Bruce, his wife Lynette, and I were part of a group of six climbers, plus two guides, setting out on a 3-day trip to summit the mountain.  A group like this needs to form high-functioning relationships in a heartbeat, and we did.  It was one of the most memorable outdoor experiences of my life, and the friendships from that trip have endured.

Unfortunately, in March 2021 Bruce was diagnosed with ALS, and the disease has slowly but steadily chipped away at his physical capacity ever since.  An avid skier, hiker, and climber, Bruce had to cease these at once, since vigorous exercise accelerates the weakening of muscle tissue.  For a time, a motorized scooter allowed Bruce to enjoy smooth trails and visit with friends at the trailheads of the Climb for Clean Air hikes in which he used to participate.  He became an avid promoter of Ski ALS—that’s Bruce riding a sit-ski in the picture above—to support the organization that has served Lynette and him so well.  2024 was the last year for riding the sit-ski, though Bruce still actively promotes this cause.

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Bruce now spends his daytime hours in a high-tech motorized wheelchair.  He is completely dependent on others, mostly Lynette, for all activities of daily living.  When three of us visited Bruce and Lynette in their new home this past November, it was difficult to see his dramatic physical decline, but his spirit remained strong.  While eating lunch, Bruce asked for more chips and hummus.  Seated next to him, I asked if he would like assistance, and he replied, “We’ll see.”  With one hand he scooped hummus onto a chip, then, with support from his other hand, he raised it to his mouth and ate it.  He turned to me and smiled, saying “These days, it’s all about the little victories.”

I asked Bruce then about his prognosis, and he responded, “They’re telling me 3 to 6 months.  My goal at this point is to hold my second grandchild, who is due in February.”  Following this visit, I proposed—and he agreed—that we engage in a dialog I called “Hard Earned Wisdom,” an open conversation regarding his experience with ALS and the insights and realizations this has afforded him.  No one would choose this path to wisdom, but as Bruce has no choice in the matter, we thought it would be interesting to see what surfaced.  Bruce is a consummate teacher, and the opportunity to be of service to others was motivating to him.

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Of course, when it comes to wisdom “there is nothing new under the sun,”^[1] but each of us must acquire wisdom in our own way.  For Bruce, learning and practicing patience has been of central importance.  Everything takes much longer—nowadays a shower is a multi-hour affair.  ALS has also strengthened his muscles of gratitude—as he grew increasingly less able to do things for himself, he became even more profoundly appreciative of all that others—especially Lynette—contribute to make his life possible.

Bruce has found it unexpectedly difficult let go of activities and interests when it becomes clear he can no longer to do them, especially his passion for outdoor activities.  A gifted astronomical photographer, Bruce built a nice amateur observatory in their former home, and he kept at this for quite a while.  But he and Lynette decided they needed to leave that home to move closer to family, and to a home better suited to Bruce’s needs.  He now accepts that his former home, with its mountain views and observatory, is in the past, too.

When Bruce and Lynette received his diagnosis in 2021, Bruce said he felt numb, while Lynette said she went into “fight or flight” mode.  Both soon realized the importance of staying in the moment, taking each day as it comes.  This was hard at first, with ALS providers urging them to make decisions about future care, but most of that is behind them now.  Still, day-to-day living remains difficult, and is only growing more so.

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I have written before about “transforming hope,” and Bruce has become a master at it.  In November the goal of holding his new grandchild was realistic and motivating, and in February it joyously came to pass.  Afterwards I asked if he had any new “hope goals,” and he told me he was hoping to attend the annual awards banquet for the Crystal Mountain Ski Patrol in late May, where he was to be recognized.  Ski Patrol was central to Bruce and Lynette’s early relationship, and friends from those days have upheld them on their journey with ALS.  This event, too, has come to pass, and they had a wonderful time.

A vignette from that banquet has stuck with me, as it speaks volumes about who Bruce is.  Whe he last attended this event, not long after his ALS diagnosis, someone, noticing his limp, asked if he’d had a hip replacement.  “It’s a bit worse than that,” he replied with classic understatement.  This time, when asked to speak, he went up in his motorized wheelchair, drawing every other breath from his oxygen tube, and said, “May is ALS Awareness Month, so let me tell you a little bit about it.”  ALS is a horrible disease (as Bruce always describes it), but those suffering from it are no less human for it, and still desire to be seen, known, understood, and engaged with.  I’m sure no one left that event without this awareness (or a dry eye).  As I said, a consummate teacher.

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I’ve always thought ALS provides a textbook case for medical aid in dying (sometimes called “death with dignity” or, less delicately, “assisted suicide”), and I still do.  There are no effective treatments for ALS, and it usually ends in suffocation, from losing the musculature that enables breathing.  Some with ALS choose to end their lives, and right after his diagnosis Bruce thought about it, too.  Lynette told him, “It’s up to you, I’ll support you whatever you decide.”  But his symptoms were relatively mild at first, making decisions about end of life feel less urgent.  Living in the state of Washington, he knows he has the option, but he has not made definitive plans one way or the other.

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Much time now is spent preparing for the end.  Bruce barely survived a long stint in the ICU last summer, and he knows that “one day soon my lungs will do me in.”  He agonizes over the burden his care needs put on Lynette—it’s a full time job for her, and she can no longer come and go, even for a short period, without someone else to help.  When his needs increased greatly following the hospital stay, Lynette found herself saying, “We said for better or for worse, but this?”  ALS truly is a horrible disease, for the patient and for loved ones.

Bruce has begun planning for his memorial service, partly because he can and partly so Lynette doesn’t have to.  He reflects, “While it’s not like I want my life to end, I’m thinking of it more now like … ‘release’ is the word I use.  I’m not in bad pain, but I’m in pain and I can’t do just about anything for myself.  And it’s release for Lynette, too.”  Lynette agrees.  Exhausted and depleted as she is, though, she has kept her promise to support Bruce in whatever he decides, sustained by a strong circle of friends and her love for Bruce.  They have the same birthday, and recently enjoyed their 49^th shared birthday celebration.

During a recent conversation, following the Ski Patrol event, I asked Bruce once again if he had a new “hope goal.”  After mentioning an upcoming visit from a relative, he pivoted and said:  “On a good day, we can take our dog Luna out for a walk in the neighborhood—Luna on the leash with Lynette, me in my wheelchair.  We’ve mapped out a circuit of maybe a mile that my wheelchair can handle, and one place has a nice view of Mt. Rainier.  A day like that is a day worth living for.”  Choosing life, one day at a time.

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[1] Ecclesiastes 1:9