So why did it take so long to diagnose Priscilla’s condition? One reason, which became clear in retrospect, was that she was in such good shape physically. The Michigan State neurology team wanted confirmation of Dr. A’s diagnosis, for one thing, because they thought they were seeing “insufficient muscle wasting” for it to be ALS. We suggested that Priscilla’s muscles were larger and stronger than they expected because she’d been a walker, cyclist, and swimmer who also worked outdoors often. Maybe, they said, but we still want confirmation.
Another reason, as I explained in an earlier post, was that she had an unusual presentation. The EMG was always preceded by an interview, and in her case the interview was negative, so to speak—from what she reported in answer to your questions, you’d expect not to find ALS when you looked for it. That might have been enough to allow faint markers to escape detection. Or maybe nobody in the world could have diagnosed her much before February 2014 anyway, because the disease hadn’t emerged sufficiently until then.
We’ll probably never know, but in the end it was a mercy. After her first hospitalization, she’d wanted to rush home from Ann Arbor so as not to miss a single minute of New Student Outreach. Now going out had become so cumbersome and exhausting that we’d begun to give up most of our activities. But up to this point we’d been spared the knowledge of her exact diagnosis, which would have cast an oppressive shadow over those activities. The delay had allowed us to pursue them as joyfully as possible for as long as possible.
As we’d suspected it might be, the 2013 Christmas party was the last Grad IV event we were able to attend. We also had to stop going to church. This wasn’t just because of the exhausting efforts required to get there. We tried to go once more in late January, after the power outage and most of the medical appointments were behind us, but by then interacting with so many people all at once and hearing an amplified message were simply too overwhelming for Priscilla. (We later discovered that ALS was affecting her autonomic nervous system, in addition to her voluntary muscles, and this sensitivity to sound may have been an early sign.) “I need you to take me home,” she told me in the middle of the sermon. I stood right up and wheeled her out, trusting that our pastor would understand we weren’t leaving because of anything he’d said!
The evening meetings of our small group, even in our home, also proved to be too much for Priscilla, who was by now very tired at the end of each day. So we gave up that cherished activity as well. And we had to stop swimming. The final time we succeeded in going, in mid-December 2013, I recorded in my journal, “Priscilla did 27 laps and I did 30. The process consumed 3½ hours and Priscilla dragged for the next two days. But she was still out there fighting!” We tried again in late December shortly after we got our power back, but when we arrived at the recreational complex, we discovered that power hadn’t been restored there, so all of our travel exertions were for nothing. In January, the need to keep medical appointments ruled out any activities that would cause Priscilla to “drag for two days.” And by mid-February, when she was finally diagnosed, swimming had simply become beyond the limits of her strength and energy. Amy Carmichael wrote in Rose From Brier of her accident “shutting down . . . all joyous activities,” and we knew what she meant.
But we were certainly getting lots of help and encouragement. Priscilla’s discharge planner at the hospital was so efficient that we barely got her home before an adjustable patient bed and a Hoyer lift (more about that in a later post) were delivered to our house. The next day a friend brought over some cheerful sheets that fit the new bed nicely and coordinated perfectly with a vivid red down quilt she loved, making it more of a “day bed” than a hospital bed. Without anyone organizing a schedule, different friends brought over meals that fed us for the next eight days.
One piece of equipment we were still missing, but would soon need, was a shower chair. This wasn’t covered by insurance, and the tilting model we required cost about $1,500. Once again we felt a positive leading from God not to share this need directly, but to ask Him to put us on people’s hearts, so that it would be clear that He’d met the need through them, in Fatherly love and care. We prayed this on a Sunday. On Monday we received two gifts of $500. On Tuesday we got another for $100, and on Wednesday a gift of $1,000. We then received gifts of $500 on Thursday, $50 on Friday, and $1,000 on Saturday. This was more than enough for the shower chair. We concluded that God was also providing extra money for our living expenses because I would now have to devote more time and energy to Priscilla’s care.
God also sent us greatly needed help and encouragement with more emotional and existential concerns. One night shortly before her diagnosis, as the relentless progression of her symptoms was shutting down our “joyous activities,” Priscilla was too upset to sleep. She told me she couldn’t face things getting any worse and just wanted to die. I understood completely. I’d recently told her that I’d recognized, “Everything we’ve done so far has been the easy part.” We talked things over for a while and suddenly, as if another voice were speaking, I heard the words, “Pray that your flight may not be in winter.”
I recognized this as something Jesus had said. He was warning the earliest community of his followers that Jerusalem would be “surrounded by armies” (this happened during the Jewish-Roman War of AD 66–70) and that they would have to flee from the city for their lives. The flight from Jerusalem, I realized, was going to happen, but it didn’t necessarily have to happen in winter, when the suffering would be so much greater. (One reasonable account of the event suggests that it took place in the late spring of AD 68, when the Roman general Vespasian temporarily halted military operations. If so, the prayers were answered.)
To state his instructions in general terms, Jesus didn’t just allow us, but actually commanded us, to pray to be spared any sufferings not essential to the fulfillment of God’s purposes in a given situation. To me this shows God’s mercy and compassion for His servants, even when they are called to suffer to advance His purposes. I explained this concept to Priscilla and we prayed along those lines right then and there. When we finished, we had confidence that even though she might have to endure many sufferings in the future (indeed, an ALS diagnosis was just on the horizon), any sufferings she did experience would have an essential purpose in what God wanted to do in her, for her, and through her. And with that assurance, she fell right to sleep and slept soundly until the morning.