My husband, Britt’s ALS became a chronic illness , lasting 31 years from diagnosis. Long term illness is supposed to prepare you for the eventuality. But when his pulmonologist told me it's time, I said, "For what?" The doctor’s advice was so unexpected. And here’s why.
Early in 2015, I was planning a trip to the Philippines. My younger sister was getting married that January. It was going to be the journey of a lifetime for Britt and me. The beginning of the year, I was busy ordering stuff for our stay in Manila: a hospital bed, backup suction machines, a Hoyer lift. I was too busy looking for a house with a bedroom big enough for all the life-preserving/maintaining equipment that he would need. I was focused on comparing costs.
My friends told me, "You're joking, right?" But no, I wasn't. I knew a trip taking a 71-year old, wheel-chair bound, 6'1" gentleman on a ridiculously long flight to Manila is not a joke. Oh, and by the way, he also has ALS. That he wasn't totally healthy the past few months was a consideration, but not very high in the list. Healthy? Moot question. It was merely a matter of degree: Sick or sicker. So while he was sending me bombshells of warning signs, I was choosing which sheets and pillow cases to pack and measuring door widths in prospective home rentals. I missed the hints he was dropping like bombshells not just by degrees but by latitudes: bedsores, unusual apathy, increased somnolence, etc.
Then he was gone. Just like that.
The morning after he died, I sleepwalked my way through the kids who were camped in the living room. It was mid-day. As the house slowly came to life, our son's girlfriend, Tess, announces we were all going to the beach. Adrienne, Britt's oldest, planned for us to scatter plumerias in Kailua Bay where he used to swim and sail his Hobie cat. Suddenly, as if someone turned on individual lights in everybody's heads, there followed a frenzy of noise and activity as the children quickly prepared and wolfed brunch down. Arms picked up canopies, beach mats, coolers, leftovers, drinks, bottles of sun tan lotions, flip-flops, hats, towels. We were simply heeding the dictates of energy bursting within and among us that was yearning for release. We didn't just emerge from the house, it spewed us out like a pimple just waiting to pop.
I had not engaged in spontaneity - of any kind - in such a long time I had forgotten what a delightful sizzle it was. You simply don't think it; it has the same evil rating as original sin. I could never indulge in unpremeditated actions. Leaving Britt’s side meant activating a protocol: first, let him know you're going out. Back within half an hour or Mama had to be with him. Longer than an hour meant coming back to check on him or calling the sub, if cannot. Longer than two hours: arrange for a paid substitute caregiver. Or either son, Thomas or daughter, Zandra. Picking up my bags when I wanted and going anywhere, anytime was not an option.
That day's destination was the beach - a mere 5 minutes away. Within two months - time enough to take care of vital legal documents - I flew to Vancouver with Thomas. Then I took that trip to Manila - albeit solo - and stayed 2.5 months. Two weeks after arriving back in Honolulu, I flew again to Portland, Oregon; I also spent a few days in Vegas.
It was as if instinct was a centrifugal force telling me to fly and stay away, if only for a while. Single again at 62, this widow of ALS (wALS) got reacquainted with freedom and giving in to impulse. It was a heady reunion.