Later on the same day in early November 2013 when she drilled the holes for the ramp, Priscilla gave me a haircut.  She’d been cutting my hair for thirty-three years, from the time we’d started dating.  She sat in her wheelchair and I sat on a low stool in front of her.  But her hands shook so badly now that she realized this would have to be the last haircut she ever gave me.  She cried all the way through it.  I encouraged her as best I could, but this was a loss we both felt deeply, because, as she explained, cutting my hair was a way that she showed her love by taking care of me.

She’d been right to pray that she would still be able to use her hands to make Sarah’s bouquets.  This was only a month later, and at this point her hands wouldn’t have had the strength or coordination to make them.

Four days later we went swimming.  For the first time in our entire acquaintance (we’d met as lifeguards at a summer camp when I was a teenager), I swam more laps than she did.  Exactly one more.  I said nothing about it, but Priscilla knew the count and was discouraged.  We could see this as a negative milestone, I admitted, or we could be grateful that she was still able to swim, and al-most a mile at that.

I had recently taken on the role of pouring the coffee or tea at breakfast—previously always Priscilla’s prerogative as the hostess, even when it was just the two of us—because lifting the carafe or pot had become too much for her.  Now she asked me to fill her mug less full so that it wouldn’t spill when her hands shook trying to hold it.  We also started using a smaller pitcher so that she could still pour her own milk.  This new one was exactly the same design and white color as the old larger one (Priscilla had found both in thrift stores on separate occasions), so at least that felt familiar and not so much of a change or a loss.

A week later we introduced a new assistive device.  Priscilla had become unable to get up from the couch or a chair to get back into her wheelchair in order to move about.  By watching videos online, we’d learned a technique by which I could assist her in getting up.  I’d squat down in front of her and grab her around the waist, she’d hold onto my shoulders, and I would let my weight fall back to pull her up out of a seated position.  The ideal was then for me, in one smooth motion, to turn her 90º and lower her into the wheelchair, which had been placed at right angles to the chair or couch.

The biggest potential danger in this technique (besides forgetting to lock the wheels) was that Priscilla or I could lose our grip and then I would fall backwards onto the floor.  If she were fortunate she would just fall back into her seat, but much worse was possible.  So we looked around for resources and found a tough fabric “transfer belt,” wide and snug, with pairs of handles in the front, on the sides, and at the back, padded on the inside for comfort.  Now I would almost certainly never lose my grip, and I could still transfer her safely even if her grip on me loosened.

The transfer belt. “As always,” I wrote in my journal, “we were trying to see these devices as friends that helped us keep living our lives as we wanted, and not as markers of decline.”
The transfer belt. “As always,” I wrote in my journal, “we were trying to see these devices as friends that helped us keep living our lives as we wanted, and not as markers of decline.”

The one place we didn’t start using the transfer belt right away was to get in and out of the car.  The passenger seat was low enough to the ground that even after chairs and couches became a problem, Priscilla could still get out of the car by herself.  She would swing her legs sideways and place her feet firmly on the ground, pull against the side of the car and the handle of the open door, and propel herself up and out.

But only two weeks after we got the transfer belt, she found she was no longer strong enough to do this.  We’d driven to church and were in the parking lot before the service.  We hadn’t even brought the transfer belt because she’d never needed it in the car seat before.  Mercifully we had a houseguest at the time who’d come to church with us.  She and I attempted various methods to see whether, working together, we could somehow help Priscilla out of the car.  (For example, one pulling through the open door and the other in the driver’s seat pushing from behind!)  The third technique we attempted worked, and we got into the service about on time.  But Priscilla was so upset, thinking she might never be able to attend this church again, that we changed the plans we’d made to go out to lunch with a student afterwards.  Instead we bought a rotisserie chicken and entertained him and our houseguest back in the safety of our home.

Shortly before this happened, Priscilla had been offered a potion (perhaps the most positive way to describe it would be as an “herbal remedy”) that supposedly could slow down or even stop the progression of her symptoms.  It wouldn’t necessarily restore lost function, but it might extend her life.  She declined it, and not only because we both knew that nothing of the kind had ever been shown to have any efficacy against ALS.  Rather, she said, “I don’t want to go on living like this, I just want to die!”

One of God’s greatest mercies to us was to give Priscilla, even in dark times like these, opportunities to use her unique gifts to continue helping others.  This showed her that God still had a purpose and meaning for her life.  I’ll describe the opportunities that came at this time in my next post.

2 thoughts on “Losses”

  1. Hi, You know, I sometimes just cannot start the day without reading your story.

    Did you have a diagnosis of ALS at this time?

    Off to work, in faith,



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