In the spring of 2015, even though Priscilla’s breathing remained stable enough for her to stay in regular home care, her condition progressed in other ways that posed continual new challenges for us.
For one thing, her neck and shoulder muscles became too weak to hold her head up. To do lift transfers, we had to put a stiff plastic insert in the top of the sling for support. As a result, we had develop routines for each kind of transfer all over again, because the sling was no longer behaving in the ways we’d become accustomed to.
For example, to get Priscilla out of bed in the morning, I’d been rolling up the sling so I could slip it under her, turning her from side to side. But the sling wouldn’t roll up once we added the plastic insert. Now how was I supposed to get it under her? We wrestled with this problem for a couple of weeks. I discovered that I could at least fold the sling in half, although the stiff plastic kept trying to pop it open again. Priscilla somehow got safely into her wheelchair each morning, although on some days there was a bit of suspense about that. Finally we sent an email out to our Dear Praying Friends, asking them to pray that we would have “grace, patience, and creativity to recognize the right new approaches and become accomplished in using them.”
Within a day of sending out this request, I had an insight. I’d been saying somewhat jokingly that I really needed three hands: one to keep the sling folded; another to position the sling; and a third to hold Priscilla on her side and keep her from falling off the bed (because that’s not how we wanted her to “get out of bed” in the morning!). I realized I could use the large clip that held our quilt onto the blanket lifter at night as a “third hand,” to keep the sling folded for as long as necessary. Things started working much better after that, though for a while each lift was still an adventure in mechanics (and in faith and trust, on Priscilla’s part).
Her right hand, one of the last parts of her body she could still move, began to stop working in the spring of 2015 as well. For one thing, this meant that she could no longer drive her power wheelchair. The mobility specialist recommended “attendant controls” that I could operate from the back. But our medical insurance initially denied coverage, on the grounds that I should be able to push her in a manual wheelchair instead. Actually, she would simply have fallen out of a manual chair, and she also needed to make regular back, seat, and leg adjustments, which the power wheelchair allowed, in order to remain pain-free and avoid sores.
We contacted our insurance case manager, who was always a dependable and effective ally. She told us to appeal the decision, and to call her once we had. When we did this, she said, “Give me a minute.” She tracked down someone who had the authority to decide the matter, and that person granted our appeal on the spot! “I just want you to know,” our case manager told us, “that I’m in your corner.” She surely was, and it was great to have her there.
Not having the use of either hand any more also affected Priscilla’s ability to do so-called ADLs (“activities of daily living”), such as washing her face, combing her hair, and brushing her teeth. We’d already introduced many adaptations so that she could keep doing “as much as possible for as long as possible” to accomplish these things on her own. For example, when she could no longer move a regular toothbrush up and down, we’d gotten an electric one that she could simply hold in place and let the bristles move. Instead of her leaning over the sink to wash her face with her hands, we’d worked out a system whereby she could use a washcloth and a basin while sitting back in her wheelchair.
But now I had to start doing for her the things she’d previously done for herself with my assistance. Washing her face and combing her hair were pretty straightforward, with some coaching from her. I picked up other tasks, such as cleaning the VPAP mask after each night, without too much trouble. But as I stood in front of her with an electric toothbrush in my hand, poised to brush her teeth for the first time, she said to me, “You’re a brave man.” Eventually we worked out a mutually agreeable protocol for that ADL as well.
But there was still a concern we needed to address—a more existential one. Priscilla had been told she’d be safely home with God long before anything like this happened to her. Instead, the disease kept carrying her down into more and more severe levels of disability. “Why?” she asked one day, in much desperation. “What purpose does it all serve?”
What purpose indeed. How could it possibly advance God’s interests to have someone like Priscilla inexorably stripped of the power to use the creative and artistic abilities she’d employed so wondrously in His service, and to have her reduced into what felt more and more like utter helplessness?
We struggled with these questions greatly during this season of the disease’s progression. In the end, we found peace and joy by making a choice. We chose to believe what our faith was telling us, that God did have a purpose for all that we were going through, even if we didn’t understand it now, and even if we never found out in this life what it was.
Indeed, we recognized, God’s purposes are so vast and sprawling, and His time horizon so long, that no human being is likely ever to get more than a fleeting glimpse into a tiny part of them. So what made us think we could understand where all the details of our lives fit into this big picture, and how could we make understanding it a condition of continuing to trust God? We’d certainly had every indication that God was still with us, in the form of the help we’d received and the ideas we’d gotten for how to proceed under these new conditions. In the end, it all came down once again to trusting, enduring, and not being offended.