endless mercies

AUDIO VERSION

 

Priscilla and I had each been in church on Easter morning every year of our lives, from the time we were infants, until 2014, when she couldn’t leave the house. It cushioned the blow greatly to have good friends come and spend the holiday weekend with us. Sarah’s parents, Ralph and Lisa, arrived on Good Friday afternoon. We shared pizza and salad together that evening and had a great time reminiscing. The next day, after brunch, Ralph and I went out to get a salmon to grill that night and some pastries for Easter morning.

We were on our way home from shopping when we got a call from Priscilla. A prescription had come in for her and she wanted us to pick it up at the pharmacy. We were stopped at a light, in the left turn lane, but we’d need to go straight for the pharmacy. The only way to do this now was to turn left anyway, then turn right into a strip mall parking lot, and finally come out again onto our original street. “Could it be?” I asked myself when I realized this would take us right past the door of a bakery that I knew made hot cross buns on Easter weekend. The buns were a holiday tradition for me, like the King’s College service on Christmas Eve; many years I’d made them myself. They always sold out fast at this bakery, but we took a chance and went inside.  We found that a batch had just come out of the oven and been frosted. A dozen, please.

This had to be done right. Ralph and I brought the patio table and three chairs (Priscilla had her own) out of storage and set them up on the back deck. Then the four of us sat out there enjoying the lovely weather, the fresh hot cross buns, and one another’s company on a glorious afternoon. Priscilla and I both lay down to rest afterwards, but our guests worked outside, weeding and turning the compost pile. We had our salmon dinner that evening and played some games until it was time for bed—around 8:30 for us, since we had to do range-of-motion exercises and other things before our heads could hit the pillow around 10:00.  But outside the bedroom door we heard the sound of little elves helping us with household tasks.

“Christ is risen!” “He is risen indeed!” It was great to be able to exchange these greetings with dear friends and not be home all alone on Easter. While enjoying our pastries, we watched a church service online and then some worship videos, including Robin Mark’s song The Wonder of Your Cross, which would later be played just before the start of Priscilla’s memorial service. Ralph and Lisa had to leave by mid-afternoon, and as soon as they did, we both lay down and slept to start catching up from a busier than usual weekend that had been more than worth the investment of energy.

But just before our friends left, we all heard a repetitive banging on the kitchen window and went to investigate. Priscilla kept a bird feeder outside that window so that she could watch the birds while cooking and doing dishes. A female cowbird had claimed the feeder as her territory. Not only was she chasing away all the other birds, she thought that her reflection in the window was a rival cowbird, and she kept attacking it.  Hence the banging.

Solving this problem took a couple of weeks. We read online that the cowbird was likely after the sunflower seeds in our mix, and that if we put only safflower seeds in the feeder, she’d lose interest, particularly if we scrubbed off all the oil residue from the sunflower seeds. When time permitted, I did this. Sure enough, the cowbird stopped eating the seeds. But she continued to guard the feeder as her territory anyway.

I tried moving the feeder to our back deck, where we had another hook that we usually used for a hummingbird feeder a little later in the year. The cowbird stayed where she was outside the kitchen window, now jealously keeping all the other birds out of a space where there was no feed of any kind. To our delight, the other birds returned to the feeder in its new location.

We realized only after the fact that they were now where Priscilla could watch them all the time, just outside the sliding door to the deck, rather than at the kitchen window, where she never stood any more. She typically set up in sight of the feeder for the first several hours out of bed each day. She got to the point where she could identify male and female of some 20 different species and even recognize individual birds as they came to feed, such as the three male house finches that, based on their varying coloration, she named Rusty, Red, and Fred.

We sent this report out to the list of people who’d offered to pray for us: Recently we’ve moved our bird feeder around to the deck so we can watch the birds from our dining room.  Sparrows, chickadees, house finches, goldfinches, nuthatches, tufted titmice, blue jays, downy woodpeckers, and (on special mornings) a red-bellied woodpecker crowd happily around the feeder, reminding us of what Jesus said about God’s love and care:  “Do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Consider the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. [We’re happy to have a small role in helping with this.]  Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?” And with a reminder of this right out our window, we go through each day with less worry and more trust.

Eventually the cowbird realized that she was guarding empty space and moved on.  But we’d always remember Easter 2014 both for the blessed time we’d had with our friends and for her appearance, which got us to move the bird feeder out where Priscilla could enjoy her “little friends” once again.  You’ll hear more about the birds later in this story.  They were a source of both enjoyment and spiritual insight.

 

AUDIO VERSION

 

About a year and a half before Priscilla’s symptoms first appeared, her hair salon announced a special event. Regular clients could get a haircut from one of their apprentice stylists, who would work under the close supervision of a master stylist, for about one-third the usual cost. “Well,” Priscilla said, “the price is certainly right, and the apprentice will be supervised, and how else is someone supposed to learn the trade?” So she made an appointment.

I have no doubt that the young woman who cut Priscilla’s hair for this event went on to acquire the skills and experience she needed to become a very accomplished stylist. But at this point in time, well, let’s just say she still needed the practice. After Priscilla got home she tried for several hours to make the haircut “work,” but gave up and called the salon. “Sorry about that,” they told her, “but we have a satisfaction guarantee. Come back tomorrow and one of our master stylists will fix it for free.”

And that was how Priscilla first met the remarkable woman I’ll call Melissa. Priscilla sat down in her chair at the salon and it took them less than five minutes to figure out that they went to the same church. (They hadn’t met before because this was our former church, which was quite large, and we typically went to different services.) The two of them really hit it off. And Melissa did a great job fixing the haircut. After this Priscilla made all of her appointments at the salon with her. She saw her several times a year and they always enjoyed catching up on each other’s lives.

Three and a half years into their friendship, in March of 2013, Priscilla came into the salon using a cane for the first time. Melissa spotted it immediately and observed, “That’s new.” “I might have MS,” Priscilla explained. “If you do have MS, I have no good news for you,” Melissa responded. A close family member had the disease and she had watched her decline over the years; at this point she was in a nursing home. We sympathized deeply with Melissa and her relative, but at the same time we were grateful to have someone in our lives who could anticipate with us the likely outcome of Priscilla’s disease—someone who would be, in effect, living in the same reality we were. To friendship was added solidarity, and this was a welcome encouragement.

Priscilla went to her next appointment with her walker. By the following one she was in a wheelchair, though she could still get in and out of it largely on her own. The next time, in December 2013, we had to do ten belt transfers to get her in and out of the car and the various chairs (hair wash, haircut, etc.) that she needed to sit in at the salon. Priscilla asked Melissa on that occasion, “If I couldn’t come here any more, would you consider coming to my home to cut my hair there? I’d pay you the same thing I pay here.” Melissa said she would.

In early March 2014, by the time the dust had settled from the diagnosis and the transition into home health care, Priscilla really needed a haircut again, but she just didn’t feel able to go out to the salon. So she emailed Melissa to see whether she would come to our home. True to her word, she said she would. Upon learning of the ALS diagnosis, she shared this prayer from Psalm 5: “Spread your protection over them, that all who love your name may be filled with joy.” She said she would be praying this for Priscilla.

On a Saturday later that month, Melissa arrived with a bag full of hairdressing supplies and equipment and gave Priscilla a great cut right in our kitchen while she sat in her wheelchair. When she was done, I brought out my checkbook and asked, “Should I just make the check payable to you?” Melissa gathered up her things in her arms and headed for the door, saying, “I didn’t want to argue about this in advance, but I’m not going to accept any payment.” “And besides,” she called back to Priscilla as she rushed out the door, “I can run faster than you!” This may have begun as a professional relationship, but clearly Melissa was now a friend and a sister in Christ, and no doubt had been that for a long time.

Priscilla expressed her heartfelt thanks in an email, saying, among other things, “You are one of those who have cared for the sick in the name of Jesus, and so have done it ‘as unto Him.’  What a wonderful thing to do for Jesus!” Melissa wrote back that she was currently in a small group that was reading together through the gospel of Matthew, and that in preparation for their next meeting, she had just finished studying the very passage that Priscilla had cited, in which Jesus reckons care for the sick, poor, hungry, etc. to have been offered to Him personally.

Based on how long Priscilla had been told she was likely to live, Melissa could realistically have expected to come and cut her hair maybe two or three more times. But because Priscilla outlived her prognosis by so much, she actually came to our home ten times. Knowing that everyone’s time is valuable, we made it clear that if she ever felt she couldn’t afford to cut Priscilla’s hair at no charge any more, we’d be glad to pay her usual rate. But she never accepted any payment. She told us instead that she felt Priscilla was doing more for her, by setting an example of what it means to live by faith and trust in God, than she was doing for Priscilla.

In December 2014 Priscilla asked for a short haircut, to make it easier for the home health aide to wash, dry, and brush her hair. Melissa showed her versatility by creating an appealing short hairstyle that Priscilla wore for the rest of her journey. (I called it a great “Audrey Hepburn look.”) “You’ll need a special brush for that,” Melissa said, and gave her just the right type. In a thank-you email, Priscilla called the brush the most useful Christmas present she’d gotten that year.

Right to the end, visitors and home healthcare workers would remark spontaneously that Priscilla’s hair looked great—often with some surprise, knowing how far along she was in the disease progression. And it was true. Melissa gave her more than her friendship, fellowship, encouragement, and service, as magnificent as these things were. She also gave her the gift of dignity.

AUDIO VERSION

 

As I mentioned in an earlier post, for Valentine’s Day 2014 Priscilla and I pulled out the cards we’d exchanged in 1994 and added “20-year updates” to them. She wrote, among other things, “I am learning more every day about God’s unconditional love for me as I observe you faithfully caring for me. . . . May God bless you and strengthen you.”  (A much needed and appreciated prayer!)

The card I’d given Priscilla had a rose on the front and inside was printed, “The rose speaks of love silently, in a language known only to the heart.” It didn’t seem entirely appropriate to add words to this “silent language,” but I thought for my update I could maybe slip in the words to a song. I quoted the lyrics to a favorite of ours, “Could I have this dance for the rest of my life?”

As I added this to the card, I realized for the first time that a wife can’t promise her husband this dance for the rest of his life, only for the rest of hers. But that’s what Priscilla had done. I know for a fact that one reason why she endured the entire course of her disease with such patience and fortitude was that she’d promised to be my partner and helper “till death do us part,” and even if it got to the point where she could only give me her companionship and counsel, she wanted to offer me those to her very last breath.

A few weeks after our renewed exchange of cards, Priscilla found herself half-dreaming as she woke up one morning about what it would be like to dance with the various persons of the Trinity. She imagined that with the Father it would be a more formal “daddy-daughter” waltz. Jesus loved a party, she knew—hadn’t he changed water into wine to keep a wedding reception going?—and so he would probably lead her, and everyone else who was anywhere nearby, in a Mediterranean line dance. And the energetic and creative Holy Spirit, she decided, would definitely do hip-hop.

Later that day we got a package in the mail. It was from the couple whose wedding I’d performed in Kentucky a year and a half earlier. The package contained large and small copies of a picture their photographer had taken at the reception. It was of Priscilla and me doing the only dance we’d managed that evening, to a slow number, with me supporting most of her weight.  The photo (shown below) captured how radiantly happy she was to have that one opportunity.

What had prompted her reverie about dancing with the Trinity on the morning of the day when this picture would arrive? She’d promised me “this dance” for the rest of her life. I think God was asking for the next dance.

AUDIO VERSION

 

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.

AUDIO VERSION

 

This post continues the story I began in my previous post.

“I know we need help,” Priscilla told me towards the end of January 2014, “but I don’t know what kind of help we need.”  She now had to use the transfer belt every time she changed locations in the house, so we were doing 15-20 lifts per day.  I couldn’t pick her up from a seated position without her pushing with her legs, and they were getting weaker and weaker.  They’d already collapsed under her during a couch-to-wheelchair transfer; we’d had to improvise a way to get her up off the floor.  Priscilla’s back muscles were also getting weaker, so that sitting up straight (at the computer, for example) led to serious back pain.

We were getting plenty of practical help from friends with meals, snow shoveling, errands, and even minor home repairs.  But we were about to be overwhelmed by the demands of Priscilla’s direct care.

A couple of days after she declared, “We need help,” we got our medical insurance company’s monthly newsletter.  One article was about their nurse case managers who coordinated care for people with progressive degenerative conditions.  “That sounds like us,” I said.  I consulted Priscilla and we agreed to request one.  A couple of weeks later we got a call from our new case manager, introducing herself.  She was a delightful and no-nonsense person with whom we “clicked” immediately.  She directed us to just the kind of help we needed.

With her coaching, I asked our doctor to refer Priscilla to a home health care agency.  This would bring a nurse in to check up on her regularly, and an aide to help with showers twice a week.  A physical therapist came to do an evaluation and sent someone to teach me additional range-of-motion exercises to keep pace with Priscilla’s advancing symptoms.  A social worker arranged for an intake nurse to interview her for a palliative care program.  All of this was set in motion within four days of our first conversation with the case manager.  She had spoken of “rattling people’s cages,” and clearly she’d been able to do that.  She was in the right line of work.

Priscilla’s back pain was becoming severe and she’d also told me, “I might need to go into the hospital.”  Her ashen face and red-rimmed eyes confirmed this likelihood.  The pain was worst at night, so I knew we had to be prepared if a crisis came then.  I put my wallet, car keys, house keys, and cell phone in the pockets of my fleece and jeans and hung them on the back of the closet door.  This was a “go bag,” like the ones the special forces keep ready, only a wearable version.  Priscilla took off her jewelry and put it in the safe.  We both knew we were getting ready for something.

It came less than a week after we were first introduced to our case manager.  When it happened, she was a key resource once again.  She’d first called us on a Tuesday.  We celebrated Valentine’s Day that Friday with a special dinner:  I made chicken and broccoli in ginger sauce, a favorite that Priscilla had been craving.  While I was running errands a couple of days before, I’d picked up a dozen roses for her.  Priscilla explained that her gift to me, a resupply of my favorite coffee, was on its way.  We pulled out two “vintage” Valentine cards, the ones we’d exchanged in 1994, and presented them to each other again, with 20-year updates.

Priscilla could only get out of bed for part of the next day.  Back pain kept her awake that night.  By Monday morning she was in such pain that she phoned our case manager, who told her, “Call an ambulance and go to the hospital.”  She really didn’t want to do that.  But within two hours, the pain got so bad that she relented.  In a light comic touch, just as the ambulance crew was carrying her out the door on a stretcher, a delivery person stepped around them and handed me a package:  my Valentine’s Day coffee.

The back and neck pain were muscular, and the hospital was able to give Priscilla strong enough pain killers to allow her muscles to settle down and recover within a few days.  Her doctors were notified of her hospitalization, and her neurologist asked whether she’d consider doing an EMG while she was there.  Dr. A was available.  “Why not?” Priscilla responded.  At least it wouldn’t require exhausting travel to get to and from the test.

Dr. A inspired confidence the moment he walked into the hospital room.  “I won’t do anything I don’t absolutely have to do,” he assured Priscilla, “and I’ll explain everything I’m doing.”  With that she relaxed, and the pain became endurable because  it would be pain with a purpose.  There was no primal screaming, as there’d been throughout the two previous EMGs.

The doctor and his resident chatted light-heartedly at the start, but soon they grew silent and grave.  True to his word, Dr. A pursued each component of the test only so far, said, “We’ve seen enough there,” and moved on.  At the end he took both of Priscilla’s hands in his.  “This is what you hope you’ll never find when you do one of these tests,” he began.  “You have ALS, it’s throughout your body, and it’s severe.”

We weren’t stunned speechless.  There were no angry denials that this couldn’t be.  We were actually relieved and even grateful that somebody was finally living in the same reality we were.  We’d suspected all along that this wasn’t going to go away as mysteriously as it came.

“How long do I have,” Priscilla asked, “six to nine months?”  “When did you go to medical school?” Dr. A responded, “because that’s about right.”  “It feels that way,” she explained.  Six more months would have coincided with the average survival time for an ALS patient after first onset of symptoms.  Nobody imagined then that she would live nearly two more years.

Dr. A considered the EMG results conclusive, but Priscilla’s neurology team wanted to confirm the diagnosis by ruling out two other slim possibilities, anti-GM1 antibody syndrome (an autoimmune condition) and paraneoplastic neurological disorder (damage to neurons from toxins from an undetected tumor).  They wanted to leave no stone unturned, just in case her condition might be treatable.

These tests were specialized and had to be “sent out” for reading.  I checked Priscilla’s confidential online chart every day.  The results came in a week after she returned from the hospital.  Everything was negative.  This confirmed the diagnosis of ALS.  Not that we’d suspected anything different at this point.  But it was amazing how my heart had clung to any shred of hope, even one that my mind knew enough to discount.  I couldn’t help breaking into tears of hopes dashed when I reported these results to Priscilla.

We shared Priscilla’s diagnosis right away with the growing list of people who’d told us they wanted to pray for her.  In our email, we quoted from a letter that Frank Houghton, Amy Carmichael’s biographer, had written upon the sudden death of his sister.  Noting that we often “speak of God’s mysterious ways,” he said, “I know there is an element of mystery.  But I shrink from the suggestion that our Father has done anything that needs to be explained.  It suggests a lack of confidence in Him if we find it necessary to try to understand all He does.  Will it not bring Him greater joy to tell Him that we need no explanation, because we know Him?”

Priscilla had only enjoyed her Valentine roses for a few days before going into the hospital.  Concerned that they’d wilt by the time she saw them again, she prayed they would last.  They did.  On this day when the diagnosis was definitively confirmed, they were still going strong, over two weeks after I’d bought them, an inspirational emblem of beauty and endurance.

AUDIO VERSION

 

Priscilla’s doctors had suggested in 2012 that perhaps the markers of her condition were simply below the threshold their tests could detect, and that we needed to wait for them to emerge further before she could be diagnosed. We decided not to see any doctors in 2013, avoiding large out-of-pocket medical expenses for that year, and to try again for a diagnosis in 2014. Priscilla set up four appointments for January to make as much progress as possible while the insurance year was still fresh.

We soon realized that these appointments were just about the only outings we’d be able to manage that month. To keep Priscilla out of the snow and cold if we went anywhere in the winter, I’d first have to back the car out, open the ramp, and bring her down it into the garage. Then I’d fold the ramp up again and slide it to one side so I could drive the car back in. That way we could do a warm and dry belt transfer from the wheelchair into the car seat. When we got to the parking lot at our destination, I’d typically have to pull out the snow shovel we kept in the trunk and shovel the snow away from the entire length of the passenger side of the car. That would allow me to get our “out and about” wheelchair from the trunk and pull it up to the side of Priscilla’s door, where we’d do another belt transfer to get her into it.  (We’d bought a second wheelchair, via Craig’s List, for outside use only, to keep the salt and dirt out of our house)

The entire process would have to be repeated to get her home, including more shoveling in the parking lot if it snowed while we were at our appointment. And more transfers were often required while at the appointments themselves, so that I would sometimes do ten of them on a single trip. This was simply exhausting for both of us and it could take  days to recover. So January was going to be a month of medical appointments and not much else.

Priscilla started with an “annual checkup” from the same nurse practitioner she’d seen to begin investigating her symptoms back in June 2012. A few days later she had a physical therapy evaluation from the therapist who’d done so much to help her walk better later that year. We could see the sadness in her eyes as she discovered how much strength Priscilla’s muscles had lost since then.

On the recommendation of a friend, we were going to see a new neurologist. Her office was just down the road from us at the Michigan State University Clinical Center. She ordered a brain MRI in advance of Priscilla’s first appointment, also to be done at the center, and that test was our third outing of the month.

Between the MRI and the appointment, we received a letter from some friends who didn’t know that we’d resumed our pursuit of a diagnosis. They explained that they’d spent some time over the Christmas holidays praying about their giving and that God had put us strongly on their hearts. They enclosed a very generous check that would essentially cover Priscilla’s deductible and out-of-pocket expenses for the entire year. This gave us great peace of mind and allowed us to focus on the medical investigation itself, without wondering how to pay for it.

When we saw the neurologist, she explained that Priscilla’s brain MRI was essentially unchanged from a year and a half before, despite the significant advance in her symptoms. This virtually ruled out MS.  The doctor suspected that something “neuromuscular” was responsible instead—something like ALS. Priscilla’s “presentation” was much closer to the typical one for primary progressive MS (starting in the legs and moving up, with the weakness beginning on one side and spreading to the other) than to “classic” ALS (moving from the outside in, that is, starting in the hands and feet and moving symmetrically towards the core of the body). But maybe she had ALS with an unusual presentation.

The neurologist ordered a spinal MRI, just to be certain, and said she would review the EMG that had been done at the University of Michigan. But she felt that Priscilla really should have another EMG, since that one was over a year old.

As you can imagine, Priscilla was not keen on the idea of a third round of “medieval torture.” If she really did have ALS, then she’d gotten two false negatives from this test already. What was to say she wouldn’t get a third false negative, and go through the excruciating pain again for nothing?

The neurologist told us about a colleague of hers on the Michigan State medical faculty, a certain Dr. A (I’ll call him). He was a nationally respected authority in electrodiagnostics—an examiner of candidates for certification in the field and a director of its governing board. “I would have only him do the test,” she promised. Priscilla said she would think about it.

When the spinal MRI was performed, it showed no change, either. If we wanted to continue pursuing a diagnosis, the path led straight through another EMG. We talked about this at length and finally concluded that if it was basically a tossup between two untreatable fatal conditions, MS or ALS, then it didn’t really matter which one Priscilla had. The bottom line was the same.  We contacted the neurologist and told her that she wanted to forgo any further testing (particularly an EMG) and transition from diagnosis-and-treatment efforts into palliative care. Maybe we’d never find out what she had, but at this point simply caring for her was enough of a challenge that we could hardly spare the time and energy for much further investigation.

We didn’t realize that she’d have her diagnosis in less than a week.

To be continued.

AUDIO VERSION

 

At the end of September 2013 I was asked to give a presentation on the literary character of the biblical books as part of a “conversation among scholars about the Bible,” sponsored by Biblica and Christianity Today.  My eyes widened as I read the names of the other invited participants and their topics. The event would be held in Chicago on January 2–3, 2014. I described the opportunity to Priscilla and she was very excited for me to go. I’d been away for a couple of days once or twice since her symptoms started, and she’d always managed just fine and even enjoyed herself. “It’s my ‘cat’s away’ time,” she told me confidentially when I returned from one trip. So I eagerly accepted the invitation.

Within a month, however, she reached the point where it became difficult for her to get up from a chair without assistance. We’d thought we’d only need someone to be on call to help Priscilla if anything unexpected came up.  Now we realized we’d need to find someone to stay with her the whole 48 hours I’d be away, to help her get up and use her walker, or she wouldn’t be able to move around the house at all.

Where would we ever find such a person? One evening we went online to look into home health aides and visiting nurses, but Priscilla shuddered at the thought of different strangers coming in and out on 8-hour shifts the whole time I was gone. “Well,” I said, “who would you want to come and help you, if you could have anyone in the whole wide world?” She named someone immediately.

This was a woman who’d attended our church while doing a doctorate in nursing at Michigan State. She’d become a dear friend during those years. Now she was a professor of nursing at a college within driving distance of us. “Then why don’t you start by asking her?” I suggested. We both expected that she might have too many teaching and research commitments to be able to get away, but it made sense to Priscilla to begin by asking the person she wanted the most. So she wrote her an email that night, explaining our situation and inquiring whether she might come help.

The next morning Priscilla went into her office to check email and immediately cried out, through tears of happiness, “She’s coming!” It turned out that this woman and her husband had been talking on and off throughout October, which was Pastoral Appreciation Month, about the different ways we’d helped them over the years and about what they might do to show their appreciation.  The woman had been planning to email us about this and actually apologized that Priscilla had had to write to her first with a request!

Priscilla wrote right back, expressing her joy through a quotation from the Scriptures: “No eye has seen, no ear has heard, and no mind has imagined the things that God has prepared for those who love him.” This was unimaginably good news. She added, “I’ll feel so safe with you” and “I’m really looking forward to our little retreat in early January!”

Priscilla’s symptoms unfortunately worsened over the next two months. At the end of December, less than a week after the power outage, she was heading for bed, using her walker, when her legs started to collapse under her. Only the fact that she was already so close to the bed that she could rush onto it prevented a serious fall. She had hoped to be able to keep using the walker to get around the house, at least until I got back from Chicago. But these hopes had not been fulfilled. If our friend hadn’t been coming, I would have had to cancel the trip, as we couldn’t have counted on every visiting nurse or aide to have the specialized skills needed to help Priscilla with multiple transfers each day between the wheelchair and regular chairs, the bed, and the shower.

But our friend was coming. So on January 2 I got up early to get ready for my flight, and I also helped Priscilla get ready for her upcoming “retreat.” I was at the computer trying to confirm the flight when this friend arrived. I let her in, greeted her, and left her with Priscilla as I went back to the computer. By then the information had come up: The flight was cancelled, due to lake effect snow at O’Hare Airport. I realized that I still had just enough time to drive to Chicago and make it there by the start of the conference. So after a brief flurry of phone calls to explain these new arrangements, I showed our friend how I’d been helping Priscilla do transfers using the belt (she said she would “certify” us on the “skill”) and I drove off into lightly falling snow.

The story of the conference could easily fill an entire post of its own, beginning with how everybody got there. Hundreds of flights in and out of O’Hare were cancelled that day, but all the participants made it in the end. One speaker was the last stand-by passenger on the last flight to Chicago from the city where he lived. The presentations and conversations were amazing.

Heavy snow and severe cold were forecast for our region for the afternoon of the day after the conference, so that morning I got up at 5:30, even though things had lasted well into the evening the night before, and I drove right home so that our friend could get back to her city before the snow hit.  That afternoon and overnight 15 inches of snow fell and the temperature dropped to -30º.

I’d made it to the conference and back, and Priscilla had had a wonderful, blessed time with our friend, but now we had a new problem. How would we ever clear so much snow from our driveway, in such temperatures?  But God had us covered once again.  The son of one of our neighbors had an excavating business.  He brought over his “bobcat” and once he’d helped his parents, he removed all the snow for us as well. While he hadn’t spoken to us about it, he’d noticed Priscilla’s condition worsening, and he kindly wanted to help in this way.

We’d received many mercies in connection with the conference, and I was so grateful that I’d been able to participate.  But it was clear that this would have to be my last time away “for the duration.”  So in the months ahead I turned down several other possibilities I was contacted about that I would otherwise gladly have pursued, including more one-time ministry opportunities and several job openings. I tried not to let Priscilla find out about these because I didn’t want the thought even to enter into her head that I might wish things were otherwise. As I would tell her repeatedly over the next two years, in taking care of her at home, I was where I wanted to be, and I was doing what I wanted to do.  More than anything else in the whole wide world.

AUDIO VERSION

 

This post continues the story that I started in my previous post.

The next day of the power outage passed quietly. We bundled up in multiple layers of clothing, with scarves and hats, and came out for breakfast. We wanted to have our favorite cinnamon-raisin English muffins, but the toaster was too great a load for the generator and it popped a breaker on it. After re-starting the generator, I tried pan-toasting the English muffins, but the raisins caught on the pan and burned. We ate them anyway, but agreed we should have oatmeal again for breakfast the next morning.

Priscilla read quietly on the couch much of the day, but she joined me at the table in the evening. After we’d warmed up and enjoyed the last remaining leftovers from the dish we’d made before the outage, we worked together for a couple of happy hours on the large jigsaw puzzle I’d gotten in the Christmas party White Elephant exchange. Then we bundled ourselves off to bed, where we’d always been the warmest since the whole experience began.

I’d refueled the generator at 5 a.m., 2 p.m., and 9 p.m. This had given me a good feeling for how long it would run on a tank of gas—about 12–16 hours, depending on the load we were applying. I realized I wouldn’t have to get up during the night. We’d be good till the next morning.

That meant Christmas Eve. It had become a tradition for us to listen to the Service of Nine Lessons and Carols held that day in the King’s College Chapel, Cambridge, England. The service started at 10:00 a.m. our time, so we stayed in our warm bed until then (I’d refueled the generator at 8:00) and we listened to it on our battery-operated emergency radio. Joining in the service was just as moving an experience as always. Then we piled on the layers and came out for breakfast. Oatmeal.

The weather was getting colder and the house had gotten down to 52º overnight. (The thermostat wouldn’t start our furnace, but it would tell us how cold things were getting without it!) Priscilla had the good idea of using the “fan” space heater to blow more heat out of the “radiator” one. I ran yet another extension cord directly to the generator so we could operate both heaters at once without overload. This made some difference, but we felt we were still losing ground, and even colder temperatures were forecast for that night. Our neighbor brought over a larger “radiator” heater, and when we ran the “fan” behind it, we started making progress against the cold. We eventually got the indoor temperature up to 58º.

Our neighbor sat with Priscilla while I ran some errands. I refilled all of our gas cans and then went shopping for needed supplies, including food for our Christmas dinner. But we were all set for Christmas Eve. This neighbor had kindly brought us servings from her family’s own holiday meal: roast lamb, chicken polenta, and potato soup. This made for a supper that was both warm and festive.

Around 8:00 p.m., as Priscilla was reading and I was working on the jigsaw puzzle, I heard a brief chirp from our home alarm system. I knew that meant the power was coming back on. Less than an hour before, I’d seen a truck at the end of our block, with lights flashing and beams illuminating something I hoped was grid-related, and I’d wondered whether the return of power might be imminent. It had been.

God knew just how much would be too much for us. It would have been a real battle to keep the house at all warm on a night when temperatures were expected to be in the single digits. The addition of the larger space heater had thrown off my calculations of how long a full tank of gas would last in the generator—I’d have been up half the night, going in and out of the frigid air, estimating.

Just in case the power went off again, I quickly ran the dishwasher and did the laundry, joining Priscilla in watching some Christmas Eve programming on television in between loads. We did lose power again twice, though much more briefly. Once was when I was in the basement doing the laundry. Since I’d moved the flashlight, I had to grope up the stairs in the dark to find it. The other time was in the night, causing me to relive the experience of ominously hearing the water pressure sump pump switching on and off in the basement.

But all in all we both slept soundly for the first time in many nights. We were grateful for the running water, gas stove, and land-line telephone that had kept working and been such important resources. We were especially grateful for our former neighbor’s gift of the generator and for all the help our current neighbor had given us with heaters, meals, companionship, and encouragement. Through all these means, God had enabled us to make our stand in the best place for us to be, our accessible home.

Postscript

The oil in the generator had to be changed after 50 hours’ running time. We’d had it going for at least that long. Visual inspection showed that the oil was almost black. I put changing it on my list for that Saturday. But before I could even start the project, our former neighbor called to ask whether a friend of his could borrow the generator.  Unfortunately he hadn’t gotten his power back even yet, four days after ours had come on.  I explained about the oil and the friend changed it for us.

Our front and back yards were littered with fallen branches from the ice storm, with other branches dangling dangerously from trees. Priscilla’s sister and her family arrived for a visit on Saturday evening. Unseasonably warm temperatures, in the 50s, were forecast for the first part of Sunday, with a sharp drop expected later in the day. So that morning my brother-in-law and I went outside, cut down the danglers, and cut them up along with the fallen branches. (Perhaps I mentioned that we had an electric chain saw, and extension cords for it.) Literally just as we finished the job, the cold temperatures arrived in a whoosh, as if on a tidal wave of air. We’d been working in our shirtsleeves, but now snowflakes fell on us as we fled back into the house.

Earlier in the week our gift to ourselves on Christmas, our first full day back with power, had been to make the bathroom as warm as we wanted before taking showers. Later that day we made ourselves a special dinner: filet mignon with sautéed fresh mushrooms; roasted red and sweet potatoes; petite peas; and Haagen-Dazs ice cream, preserved throughout the power outage by a line to the freezer from the generator.

AUDIO VERSION

 

Early in the morning on Sunday, December 22, 2013, I was awakened by an unusal sound. It was almost as if the washing machine was running in the basement, but I knew nobody was doing any laundry. Since the water was coming on and going off at intervals, I suspected it might be the backup water-pressure sump pump we’d had the plumber install when he was here to renovate the bathroom. A little bit later Priscilla woke up because she was hot and asked me to turn on the ceiling fan. The switch was already on. That was when we both knew we had a power outage. A severe ice storm had been forecast for the overnight, and widespread power outages of potentially long duration had been mentioned as a danger.

I went down to check the basement. While our regular electric sump pump wasn’t working, the basement was still dry because the backup was indeed running. We’d fought many battles with invading ground water during our years in Michigan. Situated among the Great Lakes, the state has a high water table. One time we returned from a trip to find several inches of water in our basement. We spent days cleaning up afterwards. We’d realized that we wouldn’t have the time or strength to fight any more of these battles during Priscilla’s illness, so we got the backup pump. Only three months after it was installed, it was doing exactly what we needed it to do.

We realized that we weren’t going to church that morning, so we turned off the alarm clock. This allowed us both to sleep in until 9:00. Then, not knowing how long a siege we were in for, we performed the first task of crisis management when no one is in imminent danger: we inventoried our resources. We still had running water. Our gas stove could be started with matches, so we could boil the water to make hot drinks, and we could cook hot meals. Our “land line” telephone still worked, so we could call friends for help and information. And we had a small generator that would allow us to use at least some electrical appliances.

A former neighbor had given us this generator when he moved away a few years before. Back in April, before we’d settled on getting the backup pump, I’d brought it around to the side of the house so I could feed an extension cord through a basement window and keep the electric pump running. Only two days before the outage, with the ice storm forecast, I’d started the generator and operated it for a while to make sure it would work for us right away if we needed it. Now, once it became apparent that the power wasn’t coming on any time soon, I got the generator going and plugged in the electric pump, to keep our water bill from being the next cataclysm.

We used the gas stove to make oatmeal and hot chocolate for breakfast. Then we decided to have “church” anyway, by listening to one of my Christmas sermons from years past. We pulled out our old battery-operated cassette player, since the sermon was on tape. The batteries had expired ten years before. But somewhat to our surprise, we discovered four new “C” batteries in our freezer, where we stored our supply of various sizes to keep them fresh.  So the congregation settled in to hear the message.

After “church” we called a good friend who lived just a couple of blocks away. Her home still had power. Her first response to hearing about our situation was to invite Priscilla and me to come and stay with her family for the duration. One thing we didn’t have was heat—we had a gas furnace, but it had an electric thermostat—and Priscilla’s condition was aggravated by cold. It made her muscles much weaker and caused her to shiver uncontrollably. We knew from previous experiences that if she got too cold, it could take her days to recover her strength once she got warmed up again. However, there was also the question of safety. We’d just done two renovations to provide mobility and prevent falls. So we decided, after deliberating with our friend, that Priscilla was best off at home, and that this was where we should make our stand.

Later in the day this friend brought two space heaters over to us. Temperatures had been in the low 30s (hence the ice storm), but they were forecast to go much lower in the days ahead. Mercifully we owned a good supply of long extension cords. (Priscilla got them so she could roam all over our property with her hedge trimmer and electric chain saw!) I plugged another cord into the generator and ran it through the basement window, across the floor, and up the stairs so we could use one of these space heaters in our living room. The first was a “fan” type, and the second was a “radiator” type. We experimented to see which would be warmer. They seemed to work about the same.

I ran another line to our basement freezer and relocated all perishable frozen items there. I moved the refrigerated perishables out into our garage, which was just about the right temperature for them. I pulled our emergency radio out of our basement “tornado shelter” and put fresh batteries in it as well.  (Yes, Michigan is a tornado state; we’d had one pass within a couple of miles of us a few years before.) We had a large flashlight that we’d also been keeping in the shelter, but only a few weeks before I’d moved it upstairs. I’d realized we’d likely be there when we first needed it, and that it would defeat the whole purpose of having the flashlight if I had to grope my way down into the basement to find it in the dark!

These measures unfolded over the course of the day. Now it was getting to be dinner time. We’d actually cooked a large meal the night before and there were plenty of leftovers in the skillet. We warmed these up on the gas stove and had a hot supper. I put a power strip on the end of the extension cord that ran up the stairs so we could plug a lamp into it along with the space heater (although there would have been nothing wrong with a candlelight dinner, either).

After we ate, I refueled the generator and drove to our neighborhood gas station (mercifully only a few blocks away) to fill all of our gas cans. We had over 9 gallons in reserve, by my calculations enough to make it through the night if necessary. With the situation stabilized, Priscilla sat on the couch reading by lamplight. I sat next to her and, though we had no idea how many more days the power outage might last, I promptly fell asleep—the sleep of a relieved man who has heat, light, and a dry basement.

To be continued

AUDIO VERSION

 

Perhaps it was the presence of our houseguest at our small group meeting a few days before the Christmas party that encouraged the discussion to take the direction it did. We were still getting together with the same people from our church, and we were now hosting the group. Priscilla explained that our friend was a seminary graduate who was doing a doctorate in New Testament and Early Christianity, and this meant that there were two people (counting me as well) with that extent of theological training who were available as resources to the group that night. “So ask anything you want!” she said.

The discussion topic quickly became, “Why couldn’t God just heal Priscilla?”

This, as you can imagine, was a question we’d pondered long and hard. It wasn’t that we didn’t believe God still healed today. Our understanding of the Bible and theology saw no problem with this, and in fact we’d witnessed our share of what we could only explain as divine healings.  So from both belief and experience, we had no problem with the idea that God might heal.

Why, then, weren’t we asking everyone to pray that God would heal Priscilla? Here’s how we explained it that night to our small group (with our friend helpfully providing valuable supporting insights). These were understandings we’d arrived at over the years from our own meditations and reflections on the Bible and theology in light of pastoral experiences that had included deaths as well as healings. Our understandings had been honed more recently in long, impassioned discussions with other people who loved Priscilla and just wanted God to heal her.

The first thing we said was that while divine healing of the sick is a vital aspect of the proclamation of the kingdom, caring for the sick is a vital aspect of the work of the kingdom. Jesus did send out his disciples saying, “Proclaim this message: ‘The kingdom of heaven has come near.’ Heal the sick, raise the dead, cleanse those who have leprosy.” But in the Parable of the Sheep and the Goats, the king (who represents Jesus himself) doesn’t say to the righteous, “Come, you who are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world. For I was . . . sick and you healed me.” He says, “I was sick and you took care of me.”

When Jesus heard that his friend Lazarus was sick, he said, “This sickness is not unto death, but for the glory of God.” This suggests that there is a “sickness unto death” (that is, one from which a person will not recover, so they will need to be cared for) as well as a “sickness unto the glory of God.” People in that latter situation may be divinely healed as a proclamation of how God’s kingdom is breaking into our world.

It follows—and this was our second point—that prayer for healing must be understood as the first step in a process of seeking guidance. It’s an appropriate and necessary first step; we told our group that we ourselves, whenever we heard someone was sick, would always pray first for their healing. But then we would be watching and listening to discern what God might show us about the purposes He wanted to accomplish through the illness. (We never believed that God actively caused someone to be sick or injured, but rather that God was always looking for a way to advance His own purposes in the face of these unfortunate realities of our broken world.) Particularly if what we discern suggests that a person may indeed be going to die, we need to help them die well. That means being lovingly cared for, in a way that allows them to say goodbye and leave a legacy.

But ultimately this all comes down to the faith God gives us to respond to a situation. Prayers for the recovery of a friend who appears to be going to die may be offered in audacious defiance of what seems to be happening. So praying about and responding to a sickness as if it were “unto death” or “unto the glory of God” is not a matter of conforming to the circumstances, but rather of following guidance actively received from God.

One of God’s greatest mercies was to show both of us, from a very early point, that what Priscilla had was a “sickness unto death.” This kept us from operating at cross purposes, with one of us wanting to prepare well for her death and the other wanting to pursue treatment and cure up to the very last moment. We were unified in facing an implacable foe, and that enabled us to put up the best possible fight together.

Explaining all of this was very helpful to the friends in our small group. They’d wanted to pray for Priscilla to be healed, but they’d gotten the impression we didn’t want them to, and they needed to know why. They all still wished to pray for her healing, which we said was fine with us, but we explained that we’d also need much prayer for, and help with, many other things unless and until divine healing might happen. They understood this and were already being very supportive in countless practical ways. They added another a few weeks later. When Priscilla signed her Do Not Resuscitate order, two of our small group members served as her legal witnesses.

For the record, Priscilla never refused or declined prayer for healing. About a year earlier, after one evening service at our previous church (ironically, because its official stance was that God didn’t heal miraculously any more), a man we’d met earlier that day at a Grad IV event and then unexpectedly saw again there asked if he could pray for her. Right in the lobby he laid hands on her shoulders, “took authority” over the disease, and commanded it to depart. Priscilla was a willing participant in all of this, full of faith and expectancy. We agreed afterwards that if any prayer could heal her, this one certainly would. But it did not. God had a different purpose in her situation.

A woman who became a dear friend during Priscilla’s illness said this in her eulogy for her: “We often hear about having faith for healing. Priscilla has shown me that it takes even more faith for suffering—to keep letting Jesus carry the yoke, to keep praising him as strength and ability fade. Priscilla has shown me that suffering is not a failure of faith, but a triumph of faith.”