Month: January 2020

Our Bucket List trip to the Grand Canyon and southern Utah

My professional work has allowed me to travel much of the world, including to some extraordinarily compelling and difficult-to-access places. But I’ve been less well traveled within the US. One trip on my Bucket List has been the Grand Canyon  and southern Utah. I really wanted to experience it while still relatively mobile. So this Christmas, our family gift to one another was a trip out West.

It was even more spectacular than I imagined.

We rented an SUV in Phoenix and started off in Sedona; the red rock cliffs were beautiful, and I managed a 2-3 mile hike on up-and-down and uneven terrain in Red Rock State Park. Then came the bad weather – a major snowstorm that hit north of us, burying Flagstaff, the Grand Canyon, and most of the high altitude locations in southern Utah with anywhere from 4 to 12 or more inches of snow. We made our way through the snow to Flagstaff, and then the Grand Canyon. The roads were ok and though the view at the Grand Canyon was very limited when we first arrived, the snowfall made for beautiful landscape and appeared to scare off many tourists, as the park was not crowded. Thanks to a Christmas gift from my brother and sister in law, we stayed at the historic El Tovar lodge right at the edge of the canyon. The next day, the clouds and snow gave way to clear skies and we were treated to spectacular views in a cold, winter wonderland.

And the mind-blowing landscapes of the West continued, as we traveled to Monument Valley, Arches National Park, Capital Reef, the unbelievable route 12 up and over Boulder Mountain, Bryce Canyon, and Zion national park. All of the locations featured otherworldly combinations of impossible rock formations with soft, deep snowcaps.  We thought after a few days we’d get bored; but each new park brought more amazement. Except for Zion, which was crowded, the other parks were lightly populated with travelers, thanks to the snow, and in many cases we were alone gazing at eye-popping views.  We hiked for moderate distances at every park; the kids would hike at a normal pace and then wait for me to catch up, with Karin walking with me.  I used walking poles and that helped on the slippery snow and ice, but even so I still slipped and fell several times. The snow made for soft and harmless landings. Each time, my supportive family rushed to me and laughed uncontrollably at my “slow motion” falls before helping me to my feet…

We ended the trip in Las Vegas, where my sister and brother-in-law treated us to tickets to the Cirque du Soleil “O” performance, which was amazing.

When we first planned the trip, it was a calculated risk. It’s always hard to know if ALS symptoms will worsen quickly over the course of several months. I was prepared to have to stay in the car while my family hiked. But my legs held up fine and I was able to hoof it to everything I hoped to see, just slowly.  I’m a bit tired now, but am very, very glad we were able to pull off this trip.

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Year Four with ALS

It was three years ago this month when I first noticed something was wrong. I was playing tennis, and when I tried to push off for a quick lateral move to hit a wide shot or poach it was as though my brain said “go” and the leg said “no.” There was a strange delay in messaging, and it meant that my first step was fine but the second one was dangerously late and awkward. I fell several times, to the point my doubles partners started to worry about me and I stopped playing. I initially attributed it to being out of shape after a lengthy recovery from a knee injury. But from the start it never felt like I was just tired or out of shape — it felt more like a disconnect in the messaging. And it was. It took me 12 months to mention it to my family physician, and another 3 to get the diagnosis.

So now I’m entering year four with ALS. The disease’s symptoms are, for now,  still confined to my legs, which are gradually weakening, in maddeningly asymmetrical ways. The foot that was initially weak is now stronger, the foot that was strong is now much weaker. Balance is hard — I walk very slowly and deliberately if without a cane or an ankle foot brace. Bending over to pick things up or tie a shoe is an adventure in balancing. But with the ankle foot brace (AFO) on my weak left foot, I can walk for several miles, at a reasonable pace, and work out on the reclining bike machine for an hour. Weirdly, it’s easier to hike a mile than to just stand with confidence without shoes at the kitchen sink.

This is all good news, under the circumstances, since the median life expectancy for people with ALS is only three years from symptom onset.  But as I enter year four, surpassing the terrible three year benchmark, I can feel the legs weakening, and can feel fatigue set in faster when I walk for long distances or climb stairs. So far, this has been a slow progression, and seems to suggest that I qualify as a “slow progression” case. But it’s still a disease progression, and like everyone else with ALS, I’m on the clock.

We’re all on the clock, of course. It’s just that some of us can see the sand moving in our hourglass a bit more vividly than others. When you’re “living on borrowed time,” it incentivizes setting clear priorities and making the best use of whatever time one has left.

For me, my priorities and goals for 2020 are to be a good role model to my children and students for how to handle adversity with as much grace and sense of humor as I can muster; to fight death without fearing it; to spend quality time with family and friends, celebrating everything life has to offer with them; to stay professionally active as a teacher and scholar; to redouble my volunteer work with ALS organizations to raise awareness, raise funds, provide quality care services, and  promote policies that expedite the search for therapies that halt or reverse ALS;  to work to build better collaboration, trust, and unity of purpose within an ALS community that is frustratingly and unnecessarily fractured; and to thank God every day that I have such a loving and supportive family to count on.