We crossed a second threshold in the few days after Easter—a more ominous one. (Perhaps the blessed visit with our friends and the return of the birds on Easter weekend had been “tokens for good” to cheer us on as we faced these new challenges.)
Priscilla had been waking up each morning with a headache. She was also having vivid nightmares, she had difficulty lying on her back, and she was getting night sweats. During the day she had trouble concentrating. We mentioned these things to our home health care nurse and she said they sounded like the cluster of symptoms that indicates carbon dioxide buildup. Priscilla’s lung muscles were apparently weakening to the point where they were having difficulty exchanging the carbon dioxide in her blood for fresh oxygen.
As soon as the nurse explained this to us, I heard these words in my head: “The harbingers are come.” (These are the opening words of the poem “The Forerunners” by George Herbert.) While Priscilla’s earlier symptoms had been disabling but not life-threatening, these nighttime symptoms were the first signs of the complication of ALS that was the cause of death for most patients, respiratory failure.
Priscilla would now need help breathing, and she’d have to talk to a respiratory therapist (RT) about that. If this were the case, then Priscilla knew exactly which RT she wanted: a woman who’d attended the church we’d served in town. I’d performed her wedding ceremony, and Priscilla had coordinated her wedding reception. The only problem was, our medical insurance used a different company as its respiratory equipment supplier, and RTs worked for the supply companies.
We spoke with our nurse about this late on a Friday afternoon, when businesses were already closed. But first thing Monday (as in 8:00 a.m.) she called our insurance case manager and the two of them got to work. By the end of the next day, the RT we wanted was in our home for her first appointment with Priscilla! Our insurance had once again approved an exception from their “default” supplier, thanks to the vigorous efforts of our two advocates.
It was a true blessing from God to have this friend and sister in Christ, who was also a very skillful and knowledgeable medical professional, at our side to walk us through the breathing challenges that Priscilla would face from this point onward. Priscilla made very clear that she didn’t want any artificial life-prolonging measures. “That would be an invasive ventilator,” the RT explained. What she had in mind instead was non-invasive ventilation, which would alleviate Priscilla’s distressing symptoms at night without extending her season of disability.
This was specifically a VPAP, or variable positive airway pressure machine. It would send in air under pressure to give Priscilla a boost whenever she initiated a breath, and it would leave a little pressure in place afterwards to keep her airway open. It took a little while for the two of them to settle on just the right machine, mask, and head strap. But within a couple of weeks, Priscilla was using the VPAP comfortably each night and sleeping much better.
Then I started having vivid nightmares of my own. During the day there were many responsibilities to attend to, but at night an undistracted mind could register the fact that the disease was now openly displaying its fatal character. I had one recurring dream in which the two of us would head to an airport or train station, but Priscilla wouldn’t get out of the car or taxi when we arrived. “I’m not going with you on this trip,” she would explain. She seemed to accept peacefully that we were going to be separated for a while. Sometimes these dreams were so vivid they woke me up, and when I realized what they meant, I didn’t feel quite so peaceful about it. Things got to the point where I dreaded going to sleep at night, because when we were awake, whatever the challenges of Priscilla’s illness, at least we were still together! But I can see that I really needed to process what was happening, and I hope that these dreams helped me do that.
Earlier I mentioned Herbert’s poem “The Forerunners.” In it, he meditates on the first appearance of white hairs on his head. He recognizes them as signs of aging, and wonders whether he will one day lose the ability to express himself articulately. (As a preacher who also wrote poetry in English, Latin, and Greek, this was a heartfelt concern.) In other words, he was processing, too.
Herbert concludes that if he can always say in his heart, “Thou art still my God,” it won’t matter what he can no longer say with his mind, because the best he can hope for his words anyway is that they will reflect his love and loyalty to God. And so he says, speaking to his words directly, that the end of them would not be the end of him:
Yet if you go, I pass not; take your way:
For “Thou art still my God” is all that ye
Perhaps with more embellishment can say.
Priscilla herself was also saying, perhaps now with slightly raspy breath, “Thou art still my God.” When we sent out an update to tell our friends about the new VPAP machine, she requested that we end it with this quotation from Amy Carmichael’s book Rose from Brier: “I have been asking that our dearest Lord may have the joy (surely it must be a joy to Him) of saying about each one of us, ‘I can count on him, on her, on them for anything. I can count on them for peace under any disappointment or series of disappointments, under any strain. I can trust them never to set limits, saying, “Thus far, and no farther.” I can trust them not to offer the reluctant obedience of a doubtful faith, but to be as glad and merry as it is possible.’”
Herbert also said in his poem,
True beauty dwells on high: ours is a flame
But borrowed thence to light us thither.
I know from Priscilla’s bravery and loyalty to God, and her peace in the face of these ominous new symptoms, that her way was being lit by a torch of the type Herbert describes, one lent to her from heaven to show the way there.