In an earlier post, I described how Priscilla and I went to Kentucky in September 2012 so that I could perform the wedding of a couple we knew from Graduate InterVarsity at Michigan State. (They were the ones who sent a picture of us dancing at their reception that arrived on the day when Priscilla had been dreaming about dancing with the Trinity.) For their wedding, this couple chose to have the congregation sing a song together right after the traditional opening sentences. The song was “Ten Thousand Reasons” by Matt Redman. This was the first time Priscilla and I had heard it.
All around the top of the church sanctuary were beautiful stained glass windows. They depicted Old Testament figures such as Noah, Moses, David, and Daniel, and then scenes from the life of Christ—his birth, baptism, ministry, teaching, sufferings and death, resurrection, and ascension.
The day had been overcast, but as we all started singing, the sun broke through the clouds. It was positioned right behind the stained glass window that depicted the ascension of Christ, and it bathed that scene in golden light. The light fell on the faces of the bride and groom as we continued to sing together.
As I looked out at Priscilla, her face seemed to be alight, too, even though the congregation was still in shadow. She was a long way from getting a diagnosis—in fact, she’d just been told that she didn’t have ALS—but somehow she knew she had a fatal disease. And so she was finding joy and encouragement in these words from the song:
And on that day when my strength is failing,
The end draws near and my time has come,
Still my soul will sing Your praise unending,
Ten thousand years and then forevermore.
I had the same sense that Priscilla did about what lay ahead, and so the song, and the light, spoke to me, too. They assured me that she herself would be raised from the dead and taken up to heaven, just as Jesus had been. It was very special that this was happening in the midst of the wedding of two good friends, because this declared how we were all invited to what the Bible calls the “wedding feast of the Lamb,” eternal joy in the presence of God.
“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.”
Priscilla’s memorial service was scheduled for three weeks after her death, to give me the chance to rest up as much as possible before receiving so many visitors. I started working right away, as energy permitted, on a PowerPoint tribute to her life, to be shown at the service.
One of the CDs we’d bought on a whim a few years earlier on our way to a medical appointment, Vanessa Mae’s Classical Album, included Bach’s Partita No. 3 in E for Solo Violin. The second movement turned out to be just the right evocation of beauty and grace for the first section of my PowerPoint, which depicted Priscilla’s many talents as a watercolorist, culinary artist, floral designer, interior decorator, and seamstress. Another selection from the same CD, the second movement of Bruch’s Scottish Fantasy, proved to be the perfect fit for my last section, in which I depicted Priscilla as a “daughter of God,” emphasizing how she had devoted herself to the service of others. The movement had a couple of dramatic transitions that lined up exactly with significant transitions in Priscilla’s life once I put everything together. All I had to do was add a few extra seconds to the final slide, so it would last through the long, high note at the end.
Priscilla’s memorial service was held on Saturday, January 23, 2016. At her request, two of her “Williams kids” first sang Keith Green’s version of the 23rd Psalm. I showed the PowerPoint tribute I’d created and then gave a spoken eulogy as well.
In it, I shared how, when Priscilla learned that the Church of the Savior in Washington, D.C. had once envisioned having a “completely committed, deeply spiritual, glamorous party girl” as a staff member, she responded, “That’s what I want to be!” I explained how her personality was perfectly suited for this role. She was of the type that (according to PersonalityPage.com) “would love nothing more than for life to be a continual party, at which she plays the role of the fun-loving hostess.” “But what happens,” I asked, “when the fun is over? How does someone like this respond when she discovers she has a disease that will eventually paralyze her completely and finally kill her?” “Her response to this,” I explained, “was the finest hour in her life.”
Friends and family were then invited to share their own spontaneous tributes. Several people who’d met Priscilla as international students told how she’d helped them in practical ways. One woman related how she had rounded up and delivered all the furniture needed for a 2-bedroom apartment in a single day!
After these tributes, two members of our worship team led us all in singing Everlasting God, a song that had often encouraged and inspired Priscilla during her illness, and then our pastor spoke. Priscilla had requested white roses for her memorial flowers, and our niece Ashley had made a beautiful arrangement of them. In his message, our pastor used the white rose to illustrate that “the best is yet to come”—as Christians, we have the bright hope of resurrection.
The people of our church hosted a reception after the service. They knew that Priscilla had had a ministry of hospitality and wanted to entertain her family and friends in a manner that paid tribute to this ministry. They certainly succeeded. The reception was beautifully presented and it provided an opportunity for people from many different seasons in our lives to reconnect with one another over good food in a gracious setting.
Priscilla’s “Williams kids” put on another reception for her that evening at the Turner-Dodge House, a restored Victorian mansion in Lansing. This reception was also hosted immaculately in the Priscilla style, and it included more memorial tributes.
A woman from the group that had met weekly with Priscilla shared these reflections about her: “In her heart she wasn’t focused on her illness. Her gaze was beyond that, focused on the end for which she was created—to love, honor, and serve God, and join him in heaven. Even when she could barely speak above a whisper, she wanted to know our needs and pray for us. Even to the end she showed us the beauty of her suffering—she was a perfect example of what the Bible says: Be joyful in hope, patient in affliction, faithful in prayer. Share with God’s people who are in need. Practice hospitality. God has shown me that her suffering was not for nothing. Like the suffering of Jesus, her suffering built the Kingdom through the grace pouring out of her as she ministered, till the end, to me and all those who had the privilege of coming into contact with her. She has given us a beautiful gift that will keep revealing its hidden wisdom—how to love and embrace all that God has for us; how to accept even unimaginable suffering as a gift; how to stay faithful through affliction.”
The neighbor who’d helped us in so many practical ways was asked to share about Priscilla’s work with Graduate InterVarsity. She began with a quotation from Scripture that she felt described Priscilla’s spirit: Just as a nursing mother cares for her children, so we cared for you. Because we loved you so much, we were delighted to share with you not only the gospel of God but our lives as well. She continued, “What I saw of Priscilla’s ministry to graduate students reveals her eagerness to share the truth—the grace of God found in Jesus—but even more, the eagerness to do this through a life invested wholeheartedly and without reservation in others. I have wonderful memories of welcome cookouts, and of many other fun occasions. But these were really just the entrée into relationships, and the next step was sacrificial service: staying all night at the hospital as a doulah, refinishing furniture, transporting and orienting new students. Priscilla’s desire was to invest her whole life in others: not just for the sake of service, but for the purpose of speaking truth in to students’ lives. Finally, Priscilla’s death revealed what it looks like to live, and die, at peace with God. She had this peace with God because she loved and trusted Him and had a friendship with Him through Jesus.”
Finally, one of the “Williams kids” offered a tribute on behalf of all of our hosts that evening. She quoted from a reference she’d written for Priscilla before her illness ever appeared, which now felt prophetic: “The thing about Priscilla I’d most like to emulate is her sincere love of God and acceptance of whatever He brings into her life. She is truly a person who says, ‘God is good’ whether she likes her circumstances or not. Priscilla is the person who has taught me best that it isn’t enough to ‘look on the bright side’ or ‘make lemonade.’ Instead, it’s necessary to have the deep conviction that God is in control of the circumstances of my life and I should rejoice in whatever He chooses to challenge me with. Priscilla does this better than anyone I know.”
The morning after the memorial service, Ashley and her mother kindly served brunch in my home to my whole family. The other CD that we’d bought on a whim, jazz arrangements of Bach by the Jacques Loussier trio, turned out to be the perfect background music for this event. Meanwhile, at our church, as Priscilla had often done herself with memorial arrangements as a pastor’s wife, white roses were given out to all the women and girls present. The rest were brought to people who weren’t well enough to attend.
If I’d been able, I would have been at Priscilla’s bedside in the hospice throughout each day as her “patient advocate.” I couldn’t do this, however, because I needed strict bed rest for the foreseeable future. But our niece Ashley was scheduled to return in a few days and she agreed to take this on as her new role. In the meantime, volunteers from our church took shifts being the advocate.
I spoke with Priscilla over the phone in the mornings after she was out of bed, and in the evenings just before she went to sleep. She told me happily that there was a bird feeder right outside her window and that a cardinal and a slate-colored junco, two of her favorites, had been there to greet her when she arrived.
On Friday, New Year’s Day 2016, a young woman from our church was saying her evening prayers. When she started praying for Priscilla, as she did each night, she suddenly had “a beautiful glimpse of her dancing in heaven with the vigor and enthusiasm of a child.” In this vision, she told me later, Priscilla was “right inside a pair of heavenly golden gates, with a blur of indescribable colors all around her. I could see that she was overflowing with joy.” This was only Priscilla’s first full day in the hospice, but this young woman wondered whether the vision meant that she would soon be going home to heaven.
The next evening, after I’d spoken with Priscilla over the phone to say goodnight, we started signing off in our usual way. We’d gotten into the habit of saying the biblical blessing from the book of Numbers to one another each night. She started: “The Lord bless you and keep you . . .” But then she ran out of breath. So I finished: “The Lord make his face to shine on you and be gracious to you, the Lord lift up his countenance upon you and give you peace, and joy, now and forevermore.” (Those last words were ones of our own that we’d taken to adding at the end.)
That same Saturday night, another young woman from our church, one of the ones who’d been taking shifts as Priscilla’s patient advocate, had a vision in which the red quilt and red pillow cases on her hospice bed turned white, and a number of figures in white robes surrounded the bed and lifted her up from it. She broke into tears and asked herself, “I wonder whether God will bring Priscilla home tonight or tomorrow morning.”
Very early on Sunday morning, around 2:00, Priscilla experienced “air panic” for the first time in the whole course of her illness. She was right where she needed to be. The hospice gave her liquid morphine, the symptoms subsided, and she fell back to sleep.
Priscilla had often expressed the hope that she would be able to go home on “the Lord’s Day” (that is, on a Sunday). When our niece was with us, we would read together through Amy Carmichael’s biography for our morning devotions. When we got to the place that told how Amy’s father had died “just as the church bells were ringing for the Sunday morning service,” Priscilla commented, “Wouldn’t it be wonderful to be called up to worship in heaven just as worship was beginning on earth?” And that’s exactly what happened for her. A few minutes before our church’s worship service began at 10 a.m., her bedside advocate noticed that she’d stopped breathing.
We had framed prints of Thomas Cole’s series The Voyage of Life on our dining room wall. During her illness, Priscilla would often look at the last painting, in which angels come for a man who is at the end of his “voyage,” and say, “I want the angels to come for me when I die.” Based on our friend’s vision of the white-robed figures, maybe that happened for her, too.
Mercifully I’d gotten twelve hours of sleep that night, and so when I was called with the news of Priscilla’s passing, I felt strong enough to go to the hospice and say goodbye before her body was taken away.
While she was in the hospice, our bird feeder was deserted. I remember looking out at it repeatedly and asking, “Where are the birds?” But when I came home from the hospice that morning, I discovered the feeder swarming with birds—more different species than I’d ever seen at once, including some I’d never seen feed together before. They were having a party to celebrate her homecoming.
It made me think of a letter that Samuel Rutherford wrote to a friend who’d lost a loved one, a letter that Priscilla and I had read together several times. It says, in part: “She is now above the winter. . . . Christ is to her . . . as a new paradise to a traveler, broken and worn out of breath with the sad occurrences of a long and weary way. Now she lives for eternity in a very considerable land. . . . Oh, what spring-time is there! What a singing life is there! There is not a silent bird in all that large field; but all sing and breathe out heaven, joy, glory, dominion to the high Prince of that new-found land.” [Samuel Rutherford, Letter to Lady Ardross, 1646]
I sent out a note to our Dear Praying Friends to tell them about Priscilla’s passing and some of these circumstances that had accompanied it. I ended with this quotation from Scripture: “I heard a voice from heaven saying, ‘Blessed are those who die in the Lord from now on.’ ‘Yes,’ says the Spirit, ‘they are blessed indeed, for they will rest from their hard work; for their good deeds follow them!’”
At the end of the day, when I lay down to try to sleep for the night, instead of grief or sorrow, all I could feel was joy. I realized I was feeling Priscilla’s joy to be in her Savior’s presence. I could practically see those green eyes sparking.
When our niece Ashley went home for Christmas, she left us well enough supplied with soups for our suppers and fruit salad and baked goods for our breakfasts that we could make it through those two weeks without me having to cook. She also told me, “Don’t worry about vacuuming or cleaning. I’ll catch up on those when I get back.” Even so, without her help, my work load increased to the point where it soon consumed what little energy I had left. I had to do ROMs by myself, for example, and I had to add things like laundry and dishes back to my to-do list.
More significantly, Priscilla’s caregiving needs had expanded considerably over the previous three months. We just hadn’t realized it because we were getting so much help with other things. She now needed to have her throat suctioned throughout the day to prevent choking. Without Ashley to manage the oxygen cord, I’d have to disconnect it to get Priscilla from one room to another. I could move her the length of the house in about 90 seconds and reconnect her, but by then she’d have nearly passed out and it took time and effort to get her stabilized again.
I’d already been teetering on the brink of exhaustion, and the extra work pushed me over the edge. On December 26, Priscilla had to call me repeatedly for suction in the night. I barely got any sleep and that finished me off. I had no strength left to care for her at home. We were no longer a patient and a caregiver, we were two patients, one with ALS and one with exhaustion. “I’m so sorry,” I told her through tears, “I’m so sorry.” “Don’t apologize,” she reassured me. “I’m amazed you lasted as long as you did.”
We made one last effort to get my strength back. A neighbor kindly came and helped with housework while I rested. But as soon as I tried to resume something like a regular schedule, Priscilla saw it was draining me completely and told me, “You don’t look good at all!” I had to admit that I didn’t feel good at all. I lay down next to her in the bed and said, “We need to get you into the hands of people who can take care of you as soon as possible.” That meant residential hospice.
It was the middle of the week between Christmas and New Year’s. We didn’t know whether the people we needed to talk to were even working. But we started with our home care nurse. She was working that day, and she had an hour and a half to give us starting at 1:30. We wanted our neighbor to be sit in on this conversation, and she was free to come because it was winter break at the school where her husband worked, and he could watch their kids. We wanted another friend, our pastor’s wife, to be part of the conference, too, and she was already scheduled to come and sit with Priscilla that afternoon.
Just as these three women were walking in the door at 1:30, the phone rang. It was our insurance case manager. She had no idea that a meeting was just beginning that vitally required her participation, since insurance pre-approval was required for admission to hospice. She began, “I hadn’t talked to you guys for a while, so I’m just calling to see how you’re doing.” I explained how timely her phone call was, and she said, “Priscilla needs pre-approval for hospice. I’ll get right on it!”
We decided to try to get Priscilla admitted as a resident of the same hospice whose home program she’d been in at the start of the year. Getting someone into hospice within a short time frame is unusual. To set up the home program, we’d had to meet first with a social worker, then we’d had a separate meeting with an intake nurse, and so forth. It was a good thing we’d started the process late in 2014 in order to get her into the program by early 2015. But because Priscilla was already in their system, now they simply re-activated her file, transferred her from home care to residential care—they had a room available for her—and that part was settled.
She still needed two more things. The first was the insurance pre-approval. Our case manager was able to arrange for that within a couple of hours. We also needed a doctor’s certificate. The person we were working with at the hospice told me, “I’ve faxed it over to them to sign, and now we’re just waiting.” I asked, “Would it be okay if I phoned the doctor’s office?” “Sure,” she said, “see what you can do.”
Our doctor was in a large and busy practice, so that when you called, you got the “phone tree.” (“Please listen to our options carefully . . . if you know your party’s extension, you may dial it at any time,” etc.) I listened to all the options, but I didn’t like any of them, so I hung up in despair. But then I said, “I’ve got to do something.” So I called back. A receptionist picked up.
I explained about the doctor’s certificate. She went to look for it and came back to the phone. “I have here it in my hands,” she said, and then explained, “The doctor is working today, but he’s in his office with the door closed. I’m not supposed to interrupt him, but I can slip it under the door and hope he signs it.” I explained how desperate our situation was. She listened very sympathetically and then said, “I’ll knock on his door and ask him to sign it.” She returned a couple of minutes later. “He’s signed it,” she said, “and we’ve faxed it back to the hospice.” Then she added, “We want you to know that our thoughts and prayers are with you.”
It was about 4:00 by this point. The hospice told me, “She’s in, but we don’t think you’d like what we’d be able to do for her if she came today. It’s so late that we’d have to bring her over by ambulance, and the room wouldn’t be ready. But we can come get her tomorrow morning.”
So we had to make it through one more night. If we’d had any doubt—which we didn’t—that moving Priscilla into residential hospice was what we needed to do, that night would have dispelled it. She had to have her throat suctioned repeatedly and I got practically no sleep once again. She’d reached the point where she needed round-the-clock care, and no one individual could provide that.
At 11:00 a.m. the next day, which was New Year’s Eve, a hospice representative came to do some final paperwork, and at noon an “ambu-cab” pulled up to our house. I drove Priscilla down the ramp and over to its lift, the driver raised her up, we rolled her in, and she was strapped down for a safe ride.
We were able to do this because her wheelchair had “tie-downs.” These are large, flat metal rings that are attached to the four corners of a wheelchair to allow for this kind of transportation. A year and a half earlier, when the mobility specialist was fitting Priscilla out for the wheelchair and going over the different features she might need, he asked, “Do you need tie-downs?” “No,” we replied, “she plans to use the chair only in the house and maybe the neighborhood. She’s not going to ride anywhere in it. We don’t need tie-downs.” He said, “I’m going to give them to you anyway.” If he hadn’t, she would have had to go by ambulance, and we would have had to figure out some other way to get the chair over to her. Yet another in the stream of endless mercies.
One day shortly after our niece Ashley went home for Christmas, Priscilla asked me, “Is the oxygen compressor on?” She was wearing a cannula that was connected to the compressor by a hose, but she didn’t feel as if she was getting any oxygen through it. But the compressor was on, and oxygen was flowing through the hose. It’s just that her lungs had become so weak that even with oxygen flowing freely to them, she felt as if she were breathing stale air.
She was awakened several times during the next few nights by the awareness that she was out of air, even though she was using the VPAP. She had to breathe as deeply as she could to get back to sleep. On one of those nights, I had a dream in which I looked out the window and told her, “There’s a dark limousine waiting for you.” “I know,” she replied. “Wait,” I said, “it’s going away.” “There will be another,” she responded. In retrospect, I wonder whether I sensed subconsciously, even in my sleep, that she was having these near-death experiences.
But then I started having new kinds of dreams. For some time I’d been having ones like the one about the limousine, in which the two of us were together but a separation was imminent. Now I started having dreams in which we were already apart. In one of them, we were at a picnic, but Priscilla was at a different table, bathed in light. She was smiling, and she was surrounded by friends from different parts of our lives. For her part, Priscilla told me about a dream she had in which she was walking around among people whose garments glowed with iridescent colors. “I’ve never dreamed anything like that before!” she said excitedly.
One morning after I’d transferred her out of bed, she had to lean back in the wheelchair for quite some time to catch her breath. I was watching her cautiously to make sure she was all right, and suddenly it struck me that I’d never seen her look quite so beautiful before. She’d always been considered a beautiful woman. One of her “Williams kids” wrote her a letter of support and appreciation when he learned of her illness. In it, he recalled her beauty and shared what he thought was its secret: “You had a glow about you that seemed to be not just physical but spiritual.” That was even more true now. Though she was barely still alive, she was glowing with a celestial radiance.
A friend had written her a letter a little before this in which she’d compared her to the autumn leaves that were “most radiant, breath-taking, and inspiring just before they leave the tree.” She told her, “You look stunningly beautiful in your final phase of life here on earth.” I’d already been struck by something similar myself, but everything I’d seen to this point was just a glimmer compared with what appeared on this late December morning. The heavenly glory was breaking through.
Certainly when seen in retrospect, all of these things—the critical breathing problems, the dreams, the unearthly beauty—were signs that the end was near. But the end of my strength was also near. I’d started pleading, “Lord, please don’t let my strength fail before Priscilla goes home.” It wasn’t at all clear which one of us would last longer.
Our niece Ashley, Priscilla’s sister’s daughter, had been talking with us on and off about coming to help with her care. At the end of the summer of 2015, she offered very definitely to come. We felt that the time was right for us to accept. Just a couple of days later, the young woman who’d been helping us for nearly a year with laundry, vacuuming, cleaning, dusting, etc. told us that she was going to take a full-time job and would no longer be able to work for us. God knew what help we needed and put it on Ashley’s heart to offer to come at just the right time.
She arrived in mid-September and immediately was a huge blessing to us. She jumped right in and picked up the work our former helper had been doing. She also took over many tasks that I’d been doing, such as serving meals. This allowed me to concentrate more on Priscilla’s direct care and to conserve my energy a bit.
One day shortly after she arrived, we realized that she’d already finished all the household tasks I would otherwise have had to do. We actually had some free time, so we set up the portable ramp and drove Priscilla out to our back patio to spend two glorious hours out there on a warm, sunny afternoon. It was only the third time she’d been able to go outside all year.
Ashley added many bright touches to our lives. She’d studied floral design and became our “in-house florist,” creating bouquets from the gardens and also caring for arrangements that others sent. She played upbeat music in the background as she did her housework, and she got us hooked on the current season of a singing competition. We’d watch episodes over the Internet, using a laptop computer perched on Priscilla’s knees, and then offer our opinions on the competitors as amateur judges.
Ashley learned some of the direct care tasks herself so that she could do them if needed. She quickly learned to use the wheelchair attendant controls so that either one of us could help Priscilla get around the house. Priscilla eventually needed oxygen all the time, so when I moved her from place to place within the house, Ashley would pick up the long cord that led to the compressor and keep it out from under the wheelchair. She also learned how to do the upper body range-of-motion exercises. We’d do them together, standing on either side of Priscilla, and this took less than half the time it took me alone.
Though Priscilla’s condition was downright scary at times, with prolonged episodes of desperate breathlessness, Ashley always stayed bravely at her post. She kept the house running and never “freaked out.” She knew we’d call her if we needed her to help with any of these episodes, and that otherwise we needed her to keep doing what she was doing.
By mid-October, Priscilla was no longer able to chew and swallow solid food. Ashley, it turned out, was a gifted and adventuresome cook, and she found a variety of creamed soup recipes on the Internet and adapted them for Priscilla’s needs. We hadn’t known we’d need an in-house chef to prepare foods for a specialty diet, but this was one more way, we realized, in which Ashley had come at just the right time. We asked her to create meals that we could all still eat together. As we explained in an email to our Dear Praying Friends, “Jesus said, ‘Life is more than food.’ We find that much of the ‘more than’ comes from sharing the same food at the same table. It’s our goal to keep doing that for as long as possible.”
When Ashley first agreed to come, we arranged for her to go home for two weeks to spend Christmas with her family. She left on December 22 and we expected her back on January 5. We didn’t realize that she’d actually completed her work with us. She’d been an invaluable help to us in so many ways, and beyond that, she’d been a cheerful and encouraging companion throughout those three months. Priscilla said to her when she left, “You’ve made this a happy time.” She told many a friend while she was with us, “Ashley has been an angel sent from God.”
When our nurse practitioner told us that because she wasn’t yet hospice-certified, her supervisor didn’t want her to manage Priscilla’s “end of life” care, this made me curious about exactly what that involved for an ALS patient. A search online turned up a very helpful article by Dr. Nigel Sykes, medical director of St. Christopher’s Hospice in London, appropriately entitled “End-of-life Care in ALS.”
Dr. Sykes explained that “most people with ALS die of respiratory failure” (meaning breathing weakness so severe that the body becomes unable to replace carbon dioxide with fresh oxygen in the bloodstream) and that “consequently, the trajectory of decline in respiratory function is the key to anticipating the final stage of the illness.” He warned that “the onset of this stage . . . is often rapid and ALS is a cause of sudden death.” One retrospective study of ALS patients showed that nearly 60% of them had died “within 24 hours of a change in their condition first being noted.” As a result, “the caring team” must prepare patients’ families for “what may appear to be a catastrophically sudden demise.” “All right,” I told myself, “now I know what to watch for, and I’ll need to be mentally and emotionally prepared for the end to come fast.”
In Priscilla’s case, a “change in the patient’s condition” was first noted in July 2015. She then did die of respiratory failure, but not within the next 24 hours. It took six months.
At first she was short of breath for certain periods during the day, but soon this was the case all the time and she needed to recline back in her wheelchair to keep the weight of her ribs off her lungs in order to breathe. When her nurse practitioner came for her next visit, she noticed the change immediately. “Are you experiencing shortness of breath?” she asked. “Yes,” Priscilla replied, “but not to the extent that I want to go into hospice.” She was determined to stay at home for as long as possible, and the nurse practitioner was kindly willing to abide by her wishes and not force the matter. As dire as this was, it wasn’t quite “air panic.”
Still, Priscilla would spend all day just trying to catch her breath. It required 20 or more gasps to get that “caught up” feeling, and she would soon run out of breath again. Imagine running as fast as you can for as long as you can, pushing to the limits of your lung capacity until you collapse on the ground, gasping for breath. That’s how short of breath Priscilla felt all the time.
Yet still she hung on to life. These were horrible days. I can’t put it any other way. Yet God’s mercies to us continued. In fact, some of the most direct assurances we had of God’s continuing love and presence came during this most desperate part of our journey.
Friends who lived in other parts of the world started appearing in my dreams at night, right around the time when they would be getting up and remembering us in their morning prayers. Friends in the United States and Canada showed up in my dreams, too, and these were people who’d told us that they prayed for us in the night if they ever woke up. Some of them reported waking up regularly at specific times, such as 3:00 a.m. I believe God was reassuring me by showing me in my dreams that He had us covered by prayer around the clock.
One night in a dream I visited with another friend who was already in heaven. I’d known him on earth as a godly older gentleman. It eventually dawned on me that he’d been a widower, so he knew just what I was going through. I truly believe that God gave him a special assignment to pray for me in those days, because he could do so with compassionate understanding. These dreams encouraged me to recognize that praying friends on earth surrounded us in this deep trial with their love and care, remembering us continually before God along with a throng of those who were already in God’s presence. This awareness gave us the strength and hope we needed to carry on.
Priscilla knew she was actively dying. She’d heard of other Christians, in their final days, getting encouraging visitations from departed loved ones, or from heavenly beings. But nothing of the kind had been happening for her. “Where are the saints and angels?” she asked, expectations disappointed. “Where’s Jesus by the bedside?”
Her gasping for breath, amplified by the VPAP, became so loud that it began to keep me awake at night. I moved, very reluctantly, down the hall to sleep in the hospital bed, just so that I’d have enough energy to make it through the next day. But my ears were attuned to the sound of her voice, so that in my sleep I could still hear her call me, even faintly with a breathing mask over her face, whenever she needed help.
One night she called me in to restore the seal of the mask, which had started noisily leaking pressurized air. After I fixed it, she told me, “I liked what you did when you came in before, how you put your hand on mine and left it there till I fell back to sleep.” “This is the first time I’ve been in tonight,” I responded. “No,” she insisted, “you were here before. I liked it so much that I even took the mask off to call you back, but you didn’t hear me.”
“How did you do that?” I asked, since she no longer had the use of her hands. “Oh,” she said. “Then maybe it was a dream.” But then she thought about it some more. “No,” she insisted, “it couldn’t have been a dream. It was too vivid, too real. I could feel the pressure on my hand.”
In the summer of 2015, Priscilla’s neck muscles weakened to the point where she could no longer hold her head up on her own. She now needed what’s known as an “all-encompassing headrest.” This would keep her head from painfully and dangerously falling forward or to the side while she was sitting in her wheelchair, or to the back when she was being transferred in or out. We worked with our mobility specialist to determine what model would be best for her.
Our indomitable case manager was once again able to help expedite the process for us. Thanks to her efforts, our medical insurance approved coverage the same day our doctor faxed them a prescription. But when our mobility specialist received the headrest from the manufacturer, it had no hardware to attach it to the wheelchair. So he would have to see whether he could find some that would work.
Around this same time, after 14 months of continuous use, the battery for Priscilla’s power wheelchair stopped holding its charge all day. We recharged it in the afternoons while she was resting in her “day bed,” but we knew it would soon stop working entirely. Then she would either be stranded in bed, if we knew before she got up that the battery was gone, or else stranded out of bed, because the power “tilt” feature was indispensable for positioning a sling under her to transfer her in and out of the wheelchair.
Under other circumstances, we would have had to bring or send the chair for servicing to a company in a different city, forcing Priscilla to stay in bed for who knew how many days. But we asked our mobility specialist whether he might be able to install a new battery when he brought over the headrest, once he found some hardware for it. This was outside his usual responsibilities, but he was willing to help us out by doing this. The only catch was, the supply company would have to get insurance approval for the battery.
Somewhat desperately, since Priscilla was facing a real risk of injury without the new headrest and immobility without a new battery, we emailed our Dear Praying Friends and asked them to pray with us that the specialist would be able to find some headrest hardware, and that the company would apply for and receive insurance approval for the battery as quickly as possible. This was on a Saturday afternoon. We had no idea how long we might have to wait for these things to happen.
But on Monday morning, the specialist called to ask whether he could come with the headrest and the battery in one hour. He explained that he’d been able to pull some perfectly matching headrest hardware off a demonstration model wheelchair that his company had in its shop. They’d also approved him delivering and installing the new battery even while they were still waiting for insurance approval. Such a thing had never happened to us before, in our extensive experience with the medical system.
And so Priscilla got an all-encompassing headrest for her wheelchair that made things much safer for her, as well as a new battery that enabled us to use the chair all day long without being concerned about running out of power. We reported this news to our Dear Praying Friends, and one of them suggested that perhaps the headrest was delayed by the missing hardware so that the the mobility specialist could bring the battery along with it, saving us the trouble of sending the chair out. This may well have been the case.
The new headrest provided the support Priscilla needed when she was in the wheelchair. But because of the weakness in her neck muscles, her head was also at risk of snapping dangerously from side to side when I rolled her back and forth in bed to put the sling under her or to remove it, or when I was transferring her between the wheelchair and bed (when she no longer had the support of the headrest that was attached to the wheelchair). And so at the same time we started looking into headrests, we also began to look for a device that would protect Priscilla under these other circumstances.
Our nurse practitioner had previously worked in a surgical unit and when we asked her about this, she knew just what to get: a two-piece collar that was held together with Velcro. I could slide the back behind Priscilla’s neck, whether she was in bed or the wheelchair, and then attach the front tightly so that she’d be safe.
This device, too, was delayed, not by missing hardware, but by inaction on the part of a different medical supply company that agreed to send us one. Though we prodded the company frequently, a month went by without anything being delivered. When our nurse practitioner found out about this, she told us she was “going on the warpath.” The collar arrived within days.
We saw these new assistive devices as more “friends” for Priscilla that would enable her to keep doing what she wanted to do. But clearly they weren’t the only friends who were helping her hold her head high. We’d seen once again through these experiences that we were surrounded by people who loved her, prayed for her, and did everything they could to help her. We made a point of counting our blessings at bedtime, and there were always plenty to count.
“One of my happy opportunities for discovering the goodness that is treasured up for us all lies in watching quietly, as the days and nights slip past, how in every moment of inmost need something, perhaps quite a little thing, occurs for my comfort.” – Amy Carmichael, Rose From Brier
Now that Priscilla could barely use her right hand any more, we took the extra leaves out of our dining room table to make it a small circular shape. She reclined in her wheelchair parallel to one of the places, and I sat just off her right shoulder at the next place around the table. For a while she could still grasp a fork or a spoon, and this seating arrangement allowed me to help guide these up to her mouth, so she could do “as much as possible for as long as possible” to feed herself.
But the day came when she realized that she could no longer even hold onto a spoon or fork, and that I would simply have to feed her. She sat sadly and silently at the table, trying to process this reality. She was moving yet farther into helplessness and dependence. I could tell that it was a dignity issue for her.
But at that very moment, a pair of cardinals flew onto our back deck. As we watched through the glass doors, the male perched on the bird feeder, while the female stayed a short distance away on the deck rail. The male gathered seeds in his beak, hopped over to the female, and put them in her beak. “Well,” Priscilla said, “if Mrs. Cardinal can let her husband feed her, I can let my husband feed me.” The scene had enabled her to break through the barrier and find what Amy Carmichael calls “peace in acceptance” of her new situation.
It was a tradition for me to buy Priscilla annuals for her deck flower boxes as a Mother’s Day present. I didn’t do this in 2014 because, frankly, we both though she would die before the flowers did. But when she kept outliving estimates of her life expectancy (people eventually stopped offering these), she finally said, “Let’s just make the best of it,” meaning life with ALS. So for Mother’s Day 2015, I picked up some red, white, and coral geraniums and planted them in the flower boxes where Priscilla could enjoy them each day. The weather was unseasonably warm that fall, and by covering the flowers on the first few frosty nights, we were able to enjoy these well into November.
But that was still outside the window. I thought it would also be nice for Priscilla to have some flowers she could see and smell from up close. She loved her peonies, but as they were planted in the front gardens, she never got to see them any more. So I cut some and put them in a vase so she could enjoy their beautiful shape and color and their rich fragrance, which filled our house.
Unfortunately, this first bunch turned out to be the last one available from our gardens, as an unusually warm and wet June made the peonies bloom and fade much earlier than normal. But when this bouquet was just about past, a friend who knew nothing about any of this called and said she had something she’d like to bring over for Priscilla. It was large and beautiful arrangement of peonies, in various shades, from her own garden! We concluded that God wanted to help us “make the best of it,” too.
One evening in the summer of 2015, as I was looking ahead to the next day, I realized that I needed to make a new batch of muffins for our breakfasts. (Muffins from the store or bakery tended to be too high in fat and sugar, and they were also more sticky and could block Priscilla’s throat.) As by then I was fighting fatigue all the time, I asked myself, “Where will I ever find the strength to make those muffins?” But that same evening I got an email from some good friends in Ontario (the couple whose family had winterized our gardens in one weekend) saying that they’d be traveling right past our house the next morning, and that they’d made a batch of our favorite muffins that they’d like to drop off with us! They were able to visit with us for a few minutes and we had a grand time laughing and joking together—a great time of encouragement. God had sent us exactly what we needed, when we needed it, by the hands of good friends.
Priscilla had to state her name and date of birth, including the year, for identity verification every time health workers gave her medication. Visitors sometimes overheard this, so it became no secret that she was going to turn 60 in the summer of 2015. Our church made her a big birthday card, with everyone’s signatures and good wishes on the inside, and an original watercolor by her artist friend on the front. She also received cards, flowers, fruit, and balloons from many other well-wishers on this occasion.
A few days before her birthday, we had a special visitor. For the first and only time, a male rose-breasted grosbeak came to our bird feeder. This was just after we’d sat down to breakfast, so we could see him clearly right outside the glass door. This gorgeous large bird perched there contentedly for over an hour. Priscilla was transfixed with wonder and admiration, moved nearly to tears by the beauty of the creature.
A day or two before this, somewhat playfully, but also with a bit of curiosity, I’d asked God whether He’d thought about what He wanted to give Priscilla for her 60th birthday. Clearly He had.
“This is what are lives are like these days. There are touches of divine grace all along our path, which is also marked by struggles and tears, exhausting activities, setbacks and inconvenient necessary adjustments. So moment by moment we lean on God, who has promised to hold us in his righteous right hand and help us. Please pray that we would be patient and understanding as we face our respective individual challenges each day. And please pray that the eyes of our hearts would always be open to recognize God’s hand in meeting our every need.”
— From an email to our Dear Praying Friends, June 2015.