“Some real lives do—for some certain days or years—actually anticipate the happiness of Heaven; and, I believe, if such perfect happiness is once felt by good people . . . its sweet effect is never wholly lost. Whatever trials follow, whatever pains of sickness or shades of death, the glory precedent still shines through, cheering the keen anguish, and tinging the deep cloud.”
— Charlotte Brontë, Villette
Throughout this story I’ve described God’s “endless mercies” to Priscilla and me over the course of her illness. I’ve told mostly about what might be considered external things, such as the provision of funds and materials—just what we needed, just when we needed it—over and over again. From time to time, however, I’ve lifted back the veil a bit to show you more internal things, how God showed mercy to our hearts by giving us grace and strength and courage and joy to carry on. As I bring this story to a close, I’d like to emphasize how that second aspect of mercy was just as crucial as the first. I think the best way to do that is to quote at length from the update we sent out on March 2, 2015.
Dear Praying Friends,
“People aren’t prepared for the level of disability they’re going to experience with ALS,” our nurse practitioner told us recently, after Priscilla explained that all she could do physically now was move the joystick on her electric wheelchair, operate her computer mouse, and hold a tablespoon at meals (which Chris had to help her lift to her mouth). Priscilla shared the grief and frustration that came with these limitations, and that’s what prompted the comment. It was a word of solidarity, acknowledging our reality and validating the emotions that came with it. But it was also a word of instruction, cautioning us to prepare ourselves for as-yet-unimagined greater disabilities in the future.
This conversation crystallized for us a realization that had been forming for some time. The challenges for us the rest of the way will no longer be essentially technical or mechanical (deciding how to renovate the bathroom, finding the right access ramp, learning how to use a Hoyer lift, etc.), but emotional, psychological, and spiritual. And so we earnestly ask for your prayers that we will meet these challenges. We want to continue to face each day with courage and joy. We want to continue to trust confidently in God, not being offended by what is happening, but enduring faithfully to the end. We want to continue to believe that God’s purposes are being advanced through all of this, even if we never see or understand exactly how in this life. With your prayers we will be able to do all of these things. Thank you!
As we’ve talked all of this over, in fact, we’ve realized that if we focus on abilities rather than disabilities, we can see that we have much to be thankful for. ALS manifests a little bit differently in every patient, and we are very grateful that in Priscilla’s case, even though the progression of symptoms is far advanced, she is still able to see, hear, speak, and swallow, which is unfortunately not the case for many patients well before this stage. This means that she can still stay in touch with friends and family around the world by reading their emails and dictating responses, or speaking over the phone, or visiting in person. The two of us still sit at the same table for meals, eating the same food, and still sleep in the same bed at night. We are deeply grateful that Priscilla has been able to remain at home this whole time, surrounded by beautiful and meaningful objects and reminders everywhere of the happy and rewarding life we have lived. Indeed, when we consider all of this, we conclude that two people can continue to enjoy a very happy life together, even if one of them is in the late stages of a severely disabling disease. . . .
Let me close with a quotation from Amy Carmichael’s book Rose From Brier, which we read and re-read nightly for inspiration and encouragement: “Another of the better gifts is the power which is all divine, not in the least of us, to acquiesce with true inward peace in that which our Lord allows to be, so that it is not an effort to be happy, we are happy.” We earnestly covet this divine gift, and your prayers that we may receive it for each day, as we already do on so many days.
Thank you, and please picture us as we were a few moments ago today, sitting at the breakfast table, looking out at the many different kinds of birds on the feeder just outside, with sunlight sparkling on the snow under a brilliant blue sky, sharing what we call “coffee and tea with God” (morning prayers at the end of the meal, hot drinks still in hand), and not making an effort to be happy, but truly being happy.
With love and appreciation,
Chris and Priscilla
Many people wondered why Priscilla lived so much longer than anyone expected. One friend told her that he believed her “joyful and positive attitude” had been sustaining her. Another friend spoke similarly of her “joyful, positive spirit.” I’m sure this had a lot to do with it, and that this was a gift from God. Priscilla was not about to stop living before she was dead. “You can’t just stay in bed all day,” she would say, even when her symptoms were so far advanced that no one would have expected her to do anything else. She would get up, get dressed, and make a day of it, continuing to fight on, literally to her last breath.
But Priscilla herself gave a further reason for why she lived so long. Once when someone asked her about this directly, she replied simply, “That’s the power of love.” I know she meant God’s love for her, as well as the love God had given us for each other.
Thomas à Kempis wrote in The Imitation of Christ: “Love feels no burden, thinks nothing of trouble, attempts what is above its strength, pleads no excuse of impossibility; for it believes it may do anything and that all things are possible for it. Where one who does not love would grow weary and give up, love is able to undertake all things, and bring them to completion.”