Onset of symptoms

AUDIO VERSION

“For some reason it’s harder for me to walk to the pier now.”  Looking back, we were able to recognize that this was the moment when Priscilla first perceived the symptoms of ALS.

It was May 2011.  We had returned to Amelia Island, Florida, our favorite vacation spot, to celebrate our 30th wedding anniversary.  As had become our habit on these visits, each morning before setting up on the beach for the day we’d walk from our hotel to the fishing pier and back.  The round trip of about two and a half miles was almost exactly the distance we walked in our neighborhood several times a week.  But walking on sand was just that much more difficult than walking on pavement that Priscilla’s weakening muscles noticed the difference.

On this same trip she stubbed her toe several times.  She attributed this to the new pair of beach sandals she’d gotten for the occasion, although they were no different from the kind she’d always worn.  Later we understood that this was actually what’s known as “foot drop,” the failure of the leg muscles to lift the foot high enough when walking.

In July Priscilla had a frightening episode.  When she came in from an afternoon of gardening, she got a severe headache, with all-over stabbing muscle pain and nausea.  She had to take pain medication constantly for the next several days and hardly ate anything.  Slowly she resumed her normal routine, but it was weeks before she was sleeping through the nights again.  We thought perhaps she’d worked too long out in the hot sun.  The heat that afternoon likely had aggravated her condition and caused this flare-up of symptoms.

Toward the end of the summer Priscilla started having trouble getting back up when she squatted down to get something out of a lower cabinet in the kitchen, or when she knelt down to reach an item on the bottom shelf at the supermarket.  On one trip to the store she had to clamber hand over hand up the side of a shopping cart to get back on her feet.

By September it was becoming hard for her to bring the laundry upstairs from the basement.  “We all lose core strength as we get older” was her explanation.   She contacted my brother, who’d worked as a physical trainer, and he recommended some exercises that seemed to help.  We also joined the local fitness center and started swimming regularly.  Within a few weeks Priscilla was zipping up the stairs carrying one or even two baskets of laundry, and we thought our problem was solved.

But the strength gains from exercising were eventually overtaken by the progression of the disease.  In March 2012 we stayed with some friends for a few days and I plotted out a walking route the same length as the one we were still doing regularly at home.  But Priscilla had difficulty on this new route.  In retrospect I can see that this was because it went up and down hills—our neighborhood was flat.

Later that month she was babysitting for a “moms morning out” program at a church in town and she decided to teach the children to skip.  The only problem was, she wasn’t able to skip herself.  She could no longer lift her legs off the ground.

In April the Grad IV Bible study we’d been attending in a student’s apartment held an end-of-the-school-year potluck dinner.  The apartment was on the third floor.  Since the previous fall I’d been noticing that it took a little longer each week for Priscilla to climb the two flights of stairs.  Now, carrying a thick cut glass bowl filled with her famous Caesar salad, she wasn’t even able to make it up onto the first step.  She handed the bowl to me and said, “Go ahead, I’ll get up there eventually.”  She did, but we both knew we had a problem that wasn’t going away.

In the midst of all this we had an experience that, once again in retrospect, was a sign of God’s grace and presence.  One late afternoon back in October 2011 we were taking our usual neighborhood walk.  We’d just gotten to the end of our street and were about to turn left for the next leg of the route when we both spotted an unusual “sun bow.”  One rainbow-colored ring completely encircled the sun.  There were two larger arcs above it, one circling downward and the other upward.  We stood on the street corner for the longest time marveling at the sight.  We both felt that we hadn’t just happened to be in the right place at the right time to view an interesting atmospheric phenomenon.  We sensed that there was a message in it for us from God.

I can now understand what that message was.  The lower circle, the one around the sun, was whole.  The upper circle had become separated into two parts.  One of them arched upwards towards the heavens, while the other arched down from there, and their arms, so to speak, were reaching out to one another.  This was both a warning and a promise.  It was a warning that we were going to be separated by death.  But it was also a promise that in some way we would stay connected.  (I’ll explain in a later post how, I believe, those who “die in the Lord,” to use the biblical phrase, continue in fellowship and service with “us who are alive and remain.”)

At the time, however, this meaning was not apparent.  We both simply believed that the sign meant something new was about to begin  in our lives.

Drawing and description of the triple sun bow from my journal