endless mercies

AUDIO VERSION

 

On May 9, 2012, only three days after Priscilla was unable to run to shelter from the rain and we both recognized that “something was definitely wrong,” we were introduced for the first time to the remarkable woman who would become our companion, counselor, and spiritual mentor for the rest of this journey.  We didn’t realize it at the time, however.  Perhaps the fact that this woman had lived almost her entire life on the other side of the globe, and had been dead for over 60 years, helps explain this.  Her name was Amy Carmichael.

Grad IV was meeting for its summer Bible study in a home on the edge of campus that had become known as the “InterVarsity House.”  But the facility actually belonged to a local church.  That church was just about to renovate the house for the use of its own newly restarted ministry to students.  InterVarsity’s chapters would be welcome to use the place again once the renovation was finished, but they could no longer maintain staff offices and a small library there—the church had other plans for those spaces.  There was nowhere else to keep the books, so after Bible study that night we were all invited to help ourselves to any of them we wanted.

Priscilla and I noticed a book entitled Amy Carmichael of Dohnavur.  “Let’s take that one,” we said, “we like missionary biographies.”  We had a number of trips lined up for the summer and knew there would be driving time and waiting time, and we thought this would make for an interesting read during those moments.

We started the book on our trip to Colorado, reading it aloud together for morning devotions.  We continued it on our trip to the East Coast, so fascinated by then that we took turns reading it non-stop as we drove, the passenger recounting stories of faith, courage, and sacrifice while the driver blinked away tears in order to keep seeing the road clearly.

The book was a challenge and inspiration to us right from its Table of Contents.  Amy’s biographer, Frank Houghton, divided her life into three parts, describing them based on an observation Amy herself made in one of her books.  She remarked in Though the Mountains Shake about the duties of the Levites as described in the biblical book of Numbers:

The Lord ordained that the Levites were to ‘war the warfare of the service’ from twenty-five years to fifty. After they were fifty years old they were to ‘keep the charge.’  So there is a difference between the Warfare of the Service and the Keeping of the Charge. It is impossible to think of ever dropping the Keeping of the Charge.  That goes on to the end, but the young and strong are needed for the Warfare of the Service.

Houghton used these phrases as titles for the second and third parts of Amy’s life.  (He described the first part as “Preparation for a Lifework.”)

During her Warfare of the Service, which actually began when Amy was a bit over thirty, she pioneered the rescue of girls and boys from temple prostitution in India.  This was in the early 1900s, when most people didn’t believe such a thing existed, or wouldn’t talk about it if they did.  Amy had to battle tirelessly against entrenched human traffickers and scandalized public opinion to carve out a safe space for endangered children, eventually hundreds of them, on the Dohnavur compound, as a witness against an evil that unfortunately we must still battle today.

When she was sixty-four, Amy suffered an accident from which she never recovered.  That, said Houghton, was the beginning of her Keeping of the Charge.  Until her death twenty years later, she was essentially confined to her room as an invalid.  But during that time she wrote thirteen more books (she’d already written over twenty), along with innumerable poems and letters.  Among other things, these writings explored with great courage and insight the place of suffering in the lives of believers.  Houghton wrote, “I think it is true to say that God used her pen for more widespread and deeper spiritual blessing during the post-accident period than in all the preceding years.”

Priscilla was tremendously encouraged to think that, maybe even by God’s design, a season of “Keeping the Charge”—of staying faithful, no matter what—might follow a season of service in a person’s life.  Houghton, borrowing Paul’s phrase from Philippians, sub-titled the second part of Amy’s life as the one “wherein she learned to know Christ in the power of his resurrection,” and the third part as the one “wherein she learned to know Christ in the fellowship of his sufferings.”  “Maybe that’s what I’m supposed to be doing now,” Priscilla reflected.

Once we finished Amy’s biography, we went on to read 15 or more of her books, many of them more than once.  One of the things we appreciated most was her beautiful and consistent picture of God.  In these books she told her readers in countless ways that our God is a God of love and kindness, and that we would know Him that way if we would only set aside our doubts and fears, and trust Him.

But we kept coming back to one book above all the others.  It was called Rose From Brier.  It’s a compilation of letters Amy sent to friends and supporters during the first year after her accident, as she was coming to terms with what she called the “sudden shutting down of all joyous activities.”  Her insights about finding peace through acceptance of what God had allowed were priceless.  Her admonition to “trust, endure, and not be offended” became Priscilla’s motto for the duration.  And Amy’s insistence that God still had a purpose for her own life, and for the life of anyone who’d been separated from the “warfare of service,” was stirring.

Only a few days before we first read the book, in September 2012, Priscilla was protesting that simply going on with her life and waiting months for a follow-up appointment at the specialized clinic wasn’t working.  The business of her life had to be to find out what she had, to see whether she could fight it.  “I know,” I replied.  “You’re a soldier, and you either have to be in the fight, or fighting to get back into the fight, not just waiting.”  But shortly afterwards we read for the first time in Rose From Brier Amy’s application of this same analogy to her own situation, and we were both consoled and challenged:

No soldier on service is ever ‘laid aside,’ only given another commission.  . . . Only, as I have been learning through these months, the soldier must let his Captain say where, and for what, He needs him most, and he must not cloud his mind with questions.  A wise master never wastes his servant’s time, nor a commander his soldier’s—there is great comfort in remembering that.

Eventually we started reading a chapter from the book every night, meaning that we went all the way through it about every month.  It got too inconvenient to keep checking out and returning library copies, so we resolved to get one of our own.  The book is still being published today (it has never gone out of print since it was first issued), but new editions are paperbacks.  Priscilla really wanted a hardback copy in Amy’s signature binding of blue (her favorite color) with gold lotus-flower decorations.  So I went on line to look for one of these older copies.

Some people were selling 1933 first editions as collector’s items for $70.  That seemed a bit steep even for a book we planned to use every day.  I looked around some more, seeing mostly similar prices, until suddenly I came across a copy for only $1.  It was from the sixth printing in 1950, but that didn’t matter to us.  The listing said it was in like-new condition, and I figured, “How could we go wrong for a dollar?”

When the book arrived, it was absolutely beautiful.  It stayed at Priscilla’s bedside for the rest of her life.  And it came on Valentine’s Day 2013, a love token from her dear Heavenly Father.  Or, as Amy would have said, from her Beloved.

AUDIO VERSION

 

We hosted a cookout at our house on Labor Day, Sept. 3, 2012, as the next event in Grad IV’s New Student Outreach (NSO) for that fall.  The previous two years, 12-15 students had come to this cookout, but just in case more came this time, we prepared food for about 20 people. The students, however, just kept coming and coming until there were over 35 of us!

But God sent extra food, enough for everyone, though we didn’t know in advance that any of it was coming.  Some friends dropped off a big batch of corn muffins on their way over to a different event. Our faculty advisers brought plenty of hamburger to cook, left over from a weekend church retreat. And the Grad IV couple who’d gotten married two weeks earlier brought cases of soda from their reception. “It’s like the loaves and fishes all over again!” we marveled.  This event helped draw more students into the group for the coming year.

The University of Michigan doctors had felt that Priscilla could return to physical therapy at least for “gait training,” to make walking smoother and safer, even though she still shouldn’t work her muscles hard without a diagnosis.  So a few days after our cookout she saw the therapist again, who told her that using a cane would really help.  We’d already planned to go out that Saturday to look for furniture for a student who’d agreed to host a Bible study in her apartment and had asked for Priscilla’s help in getting the place ready.  Priscilla had seen signs for an estate sale and wanted to stop there to look for a cane on the way to the thrift stores we’d be visiting.

“You’re a day late,” they told her at the sale.  “We did have some canes, but they all went yesterday.”  “I’m not too late,” Priscilla replied.  “I know God has a cane for me today.”

At the first thrift store we went initially to the furniture department to look around.  But Priscilla also asked about canes and was told to try the clothing department.  When she inquired there, the clerk replied, “Yes, we have canes,” and disappeared for a moment behind a door.  She emerged with a sleek, stylish black cane that was just what Priscilla had been hoping for.  “How much is it?” she asked.  “Oh, it’s free,” the clerk responded.  “We have a medical lending closet and all we ask is that you return it when you’re finished with it.”

Knowing that this thrift store was run by a Christian charity, and that the cane was therefore ultimately a gift from her Heavenly Father, Priscilla burst into tears and had to go into the ladies room to recover.  I told the clerk the whole story.  “God really did have a cane for her today,” she said.  Then she added, “Just a minute,” and disappeared behind the door again, coming out with another cane just as Priscilla returned.  This one was decorated in a delicate red rose pattern.  “For going out dressed up,” she explained.

Priscilla had been discharged from the hospital ten days earlier, and since then we’d been asking ourselves what we could do to speed up the pursuit of her diagnosis.  Should we call the specialized clinic she’d been referred to and ask to be notified of any cancellations in case she could get in earlier?  Should we contact her doctor there and ask her to order in advance any tests she was planning to do, so she’d already have the results when she saw Priscilla?  But now we decided we were having such a happy day that maybe we didn’t want to push for a diagnosis after all.  Maybe just living our lives would work just fine for the time being—especially since Priscilla’s gait was rapidly improving, and now she had canes.

We visited two other thrift stores and by the end of our excursion we’d found a cream and sugar set, lamps, and end tables to help the student entertain the Bible study group she’d be hosting.  By that evening we’d helped her put everything in place.  Priscilla loved using her skill and training in interior decorating to help students fix up their apartments, and she’d found things that perfectly suited the colors and design of the furnishings that were already there.

But the student felt we still needed more seating.  Between her living room furniture and other chairs that could be brought in from the desk, kitchen table, etc., there were seats for eight people.  Only seven had said they’d be attending the group (including ourselves).  But our hostess was certain that we’d have twelve before the year was over.  So we later got some lightweight folding chairs that she kept in her closet, for when that time came.

NSO concluded the next Friday with an evening of snacks, games, and a campfire at a renovated barn a few miles south of campus.  Twenty-five students joined us for the event.  Priscilla, now walking better than she had in months, prepared and served all the refreshments.  Since she was the party hostess, she used the cane with the red roses.

AUDIO VERSION

 

A few days after the barn retreat, Priscilla discovered a large, rough bump on her arm.  We weren’t sure what it was.  We didn’t know whether it had any connection with her other symptoms.  But there was certainly something ominous about it.  Similar bumps would come and go on her arms and legs in the months ahead.

In retrospect it’s clear that this was a “lateral sclerosis,” a hardening of the skin on the sides of the body.  This was one of the two symptoms that ALS, or amyotrophic lateral sclerosis, was initially named for, before its cause was known.  (The other symptom was muscle wasting, described in the adjective “amyotrophic.”)

A few nights later I had a dream in which Priscilla and I went out to a restaurant.  We were heading for a table when the maitre d’ told us not to sit there because the flooring was damaged below it.  But Priscilla said it was still all right.  A married couple was sitting at the table with another man who had a 187-ml wine bottle.

At the time I didn’t understand the dream, but it was so vivid that I recorded it in my journal.  Once again in retrospect, its meaning is clear.  The significance of the quantity 187 ml was that this made the wine a “single-serving” bottle.  I was seeing my present and my future, marriage and singleness, at the same table.  But the flooring was still safe.  The ground wasn’t about to fall out from under me just yet.  Subconsciously I was realizing that the rough bump signaled a fatal disease, but one that would take time to develop.

At the end of September I performed the wedding of the Grad IV alumni couple we’d gone to Nashville to counsel the month before.  This was in Kentucky, where the bride had grown up.  The wedding was a joyous celebration that bought us back together with a number of students we’d grown close to during their years at Michigan State, who were now scattered around the country and world.  I’ll say more about what happened on this occasion at a couple of other points later in the story.  This wedding was our seventh in nine months!  Another Grad IV wedding would follow in December.  Priscilla just loved these events and I was grateful that she could attend so many of them while we were still able to travel.

Getting gait training and using a cane were really helping Priscilla walk on level ground, but she was having increasing difficulty getting up stairs.  This was especially true of the two steps that led from our garage into the kitchen, because while the first was of regular height, the second was extra high.  She figured that if she could attach some handles to either side of the door frame, she could grab them and pull herself up and in.  So she began to think about just what kind of handles these should be. Then it dawned on her:  We already had two handles that would be perfect, and they were waiting for her only a few feet away from the door!

Five years before, she’d helped a friend with a decorating project that had involved painting vertical stripes on the walls of one room.  The friend’s husband had created a brilliant tool for this task.  He’d fastened a level to a thin board that was the width of the stripes and the height of the wall, and attached two smooth wooden handles to it.  As Priscilla’s assistant, I would hold the board by these handles firmly against the wall next to the stripe she’d just painted with a roller the same width as the board; check the level to ensure that it was vertical; and signal her to paint the next stripe along the leading edge of the board.  The project was finished in no time this way, and the creator of this ingenious device encouraged us to take it with us, in case we ever needed to paint stripes anywhere else.  It had been leaning against a wall inside our garage ever since.

Now Priscilla got out her cordless drill and, using it as both a drill and a screwdriver, she removed the handles from the board and attached them to the sides of the door.  They were just the right shape and size for her to grab securely and pull herself into the house.  This was a triumphal moment and the joy from it lingered for many days.

A few weeks later, however, early one morning before it was light, I woke up from the realization that Priscilla was awake herself.  “What are you thinking about?” I asked.  She replied, “I’ve been wondering whether someday I’ll go in that door up a ramp, in a wheelchair.”

AUDIO VERSION

 

At the end of October we traveled over to Ann Arbor so Priscilla could see the doctor at the neurological diseases clinic.  It was located on the outskirts of town, some distance from the University of Michigan hospital.  We were a bit early for our appointment and we hadn’t had lunch yet, so we stopped at a bakery-café place.  There were two small quiches in the display case and we were thinking of splitting one of them until the attendant told us that he’d just switched over from breakfast to lunch and was going to have to throw them out unless we’d like them, for free.  So we each had one.  Afterwards we heard from a friend who’d known we were going to the clinic that she’d been praying we’d receive “manna from heaven” that day.

We still had some time so we stopped at a thrift store.  On an uncharacteristic whim, we bought two CDs without being able to sample any of the music first.  One was a classical album by the violinist Vanessa Mae, whose recordings of contemporary songs we had heard before, and the other was jazz arrangements of Bach by Jacques Loussier.  We listened to these the rest of the way over to the clinic and then on our way home.  You’ll hear more about these CDs later, as they both ended up playing a special role in this story.

The doctor spent over an hour with us and we were impressed by her understanding and expertise.  Though it was a potentially painful procedure that had its risks, she wanted to do a lumbar puncture (spinal tap) to continue testing for MS.  Priscilla’s symptoms closely mirrored late onset primary progressive MS, that is, MS that starts later in life and becomes progressive immediately, without a prior history of attacks and recoveries.  Without such a history, to be diagnosed Priscilla would need to have a year of disease progression—that much was clear—plus two of the following: lesions that occurred in different places; lesions that occurred at different times; or the presence of certain proteins in her cerebral-spinal fluid, but not in her blood.  This last result would be a marker of autoimmune disease, likely MS given her symptoms, and it would get her at least that one step closer to a diagnosis, though she still had no identifiable lesions.

The doctor then told us, “We also need to consider motor neuron disease.”  “What’s that?” we asked, never having heard the term.  “Motor neuron disease,” she repeated, with a firm nod that indicated she wasn’t going to say anything more about what it was.  But to check for it, she wanted to repeat the EMG, so at least we knew it was something neuromuscular.  This was the test that Priscilla had described as “medieval torture.”  I had consoled her by saying that she’d never have to have one again.  So naturally we were hesitant.  But the doctor explained that to be confident of a diagnosis, they had to be able to do all the tests themselves, under conditions they could control.  For all they knew, the EMG from the “private practice” might be accurate, but they had to be sure.

Priscilla finally agreed, but on one condition.  She wanted the lumbar puncture and the EMG to be performed by medical school faculty members, not by the students or residents who normally did these procedures under their supervision.  If her case really was 1 in 10,000—she’d been told she was in the “1% of the 1%”—then she wanted the most trained and experienced people available to be working on the diagnosis.  Someone who was still learning might get most cases right but miss something in an exceptional one like hers.  So when the tests were scheduled this was explicitly requested.

When we got home we looked up motor neuron disease and discovered it was a less common name for ALS or Lou Gehrig’s disease.  It was actually a more accurate one as well, because it named the cause rather than a couple of the symptoms or a well-known patient.  Motor neurons carry messages from the brain through the spinal cord to the muscles.  ALS causes these neurons to stop working, for a still unknown reason, so that a person’s muscles can no longer get these messages, and they become unable to move.  We could understand if the doctor hadn’t wanted to say outright, “You might have Lou Gehrig’s disease.”

Two weeks later we returned to the main hospital for the lumbar puncture.  It was done by a woman who introduced herself as a faculty neuroradiologist.  She talked Priscilla through the procedure and performed it smoothly.  Unfortunately Priscilla suffered a common side effect, a debilitating headache that lasted for days.  This caused her to miss some Grad IV events for the first time.  Our pursuit of a diagnosis had limited our ministry before the disease itself had.

The next week we went back for the EMG.  A doctor came in and introduced himself as a “fellow” at the hospital.  We wondered what a fellow was, but given the arrangements that had been requested for these tests, we assumed it must mean a senior researcher of some kind, like a fellow in an academic institute.  So we said nothing and he went ahead with the test.  After the first part, with the electrodes, he said he needed to consult with his “staff” and left the room.  At first we thought this meant the staff who worked for him, and we wondered why he would consult them.  Then it dawned on us.  The staff was the medical school faculty, and a fellow, we realized belatedly, was someone doing a fellowship right after a residency.

Priscilla got very upset.  She had wanted the most experienced person possible to do her test.  She expressed her sense of betrayal loudly and in no uncertain terms, slamming the pillow against the exam table  for emphasis.  This brought in a series of negotiators of ascending status, with the result that the “staff” doctor finally came in and announced that she would participate personally in conducting the rest of the test.

When it was over, the “fellow” apologized sincerely for the misunderstanding, but said that Priscilla should be happy because the test had shown that her nerves and muscles were healthy—there was no ALS.  (In retrospect, even knowing that Priscilla actually did have ALS, it’s impossible to say whether a more experienced set of eyes might have recognized this, or whether her symptoms simply hadn’t yet developed to the point where anyone could detect them.  While I feel that a teaching hospital should recognize that special measures are appropriate when it identifies a 1-in-10,000 patient, I still prefer to give the doctor the benefit of the doubt in this case.)

The next day the results of the lumbar puncture were posted to Priscilla’s secure online chart.  Her cerebral spinal fluid was normal.  There was no MS, either.

“What could she possibly have?” I wondered aloud.  The best name anyone could come up with was “idiopathic progressive spastic paresis.”  “Idiopathic” meant literally “a disease unto itself,” but the term was used to describe a condition that could not yet be identified with any other known disease.  “Spastic paresis” meant that Priscilla had muscle cramping and weakness, and “progressive” meant that it kept getting worse.  But this was really a description rather than a diagnosis.

I accepted that Priscilla’s condition might be beyond the power of medicine to diagnose at this point, but it was still frustrating to have gone through so much and have only this description to show for it.  We could have told the doctors months before that she had increasing weakness and cramping in her muscles, and we didn’t know why.

AUDIO VERSION

 

For Thanksgiving 2012 we entertained some students for dinner, and more joined us for dessert and games afterwards.  A Grad IV alumna who’d returned to town for the holiday weekend spent the next day with us as well, along with a good friend of hers who was still a graduate student.  They both had some academic research they needed to pursue, so we announced a three-hour “study hall” between brunch and Black Friday shopping.  This would get us into the stores in the late afternoon, when the crowds had died down.

I used the “study hall” to do some research of my own.  I wanted to find out, “What could Priscilla possibly have?” Looking around online I discovered that a small percentage of MS patients actually have normal cerebral-spinal fluid.  So the lumbar puncture hadn’t shown definitively that she didn’t have MS, it just hadn’t shown that she did have it.  It occurred to me that we could ask the clinic doctor, when we saw her again in a couple of weeks, if she would order another brain MRI, to see whether any lesions had appeared in the six months since the last one.  If so, we might get a diagnosis after all.

Priscilla and I had a late-morning Sunday brunch date to debrief from our busy week of tests, results, and entertaining: muffins, and tea in china teacups, since it was still the holiday weekend.  I mentioned my idea to her and she agreed that it held possibilities, but she insisted, “There has to be an end sometime.”  Our pursuit of a diagnosis had used up much time and energy, and limited our ministry, but so far it had yielded no results.

We agreed to ask the doctor about another MRI, and Priscilla would undergo this test if it could be done by the end of the year, while it would still be fully covered by our insurance.  (As you can imagine, we’d already met our out-of-pocket maximum!)  But no matter what happened—a test not ordered, or not able to be scheduled before year-end; no positive result; or MS suspected or diagnosed—this would be the last step we’d take for the foreseeable future.

Speaking of out-of-pocket medical expenses, around this time I finally verified what our responsibility was for Priscilla’s stay in the hospital three months earlier.  There had been so many charges, with some confusion about certain ones, that it had taken me until now to sort it all out.  We owed $1,090.04.  Now that our obligation was clear, there was no reason not to pay up.  We shouldn’t make the hospital come looking for the money.  Sending it in would mean that we’d have that much less to live on, but I felt an assurance that God would take care of us.

Three days after I sent in the money, we received an unexpected gift of $1,000.  Given where it was sent from and how long it took to reach us, this check had to have been written at just about the same time that I was paying the hospital bill.

We saw the clinic doctor again in early December.  She went over Priscilla’s lumbar puncture and EMG results, which didn’t point to any diagnosis. She’d even done blood tests for some other possibilities that were real long shots, including sarcoidosis, an inflammatory disease that can cause bumpy rashes, weakness, decreased coordination, and joint stiffness if it affects the skin, brain, and muscles. The results were negative in all cases. The doctor concluded by telling Priscilla, “There’s nothing more we can do for you.”

But she did agree that a follow-up MRI was a good idea, to see whether any lesions might have become visible in the brain during the last six months.  An MRI could be scheduled before the end of the year.  Initially it was set for the night before our planned two-week Christmas vacation, but then an appointment mercifully opened up for two days earlier, giving us some breathing room before we left on the trip.  When we returned from  vacation, we found a phone message from the clinic doctor.  There were still no lesions.  “You do not have MS or any other disease of the central nervous system,” she concluded.  She’d also sent us a more official email that stated she was discharging Priscilla from her care—since, as she’d already explained, there was nothing more she could do for her.

I wrote in my journal, “We had no idea how to proceed next.  The future was a big question mark.”  No wonder, during these months, I was having dreams about driving past vacant lots or empty fields, or about being dealt a hand of cards and turning them over, only to discover that they were all blank.

AUDIO VERSION

 

Over the second half of 2012, while we were pursuing a diagnosis, Priscilla’s symptoms were progressing steadily.  By the end of the year, she was beginning to bump up against new limitations that she found very distressing.

Shortly before our second appointment at the clinic, the ignitor for our gas oven stopped working.  We made an initial attempt to fix it but we quickly gave up, for two reasons.  First, we realized it wasn’t wise to mess with gas lines.  The last thing we needed to do at this point in our lives was blow up our house.  But we also stopped because it was too upsetting for Priscilla no longer to be able to turn screws, get down on all fours, etc., as she’d always done before as our in-house appliance service person.

Admitting this wasn’t a “do it yourself” project, we called in a repairman.  He efficiently replaced the ignitor and then started chatting to us about our other appliances.  (Clearly he enjoyed his work.)  When he heard that our refrigerator door sometimes came open, he explained that we could stop this if we tilted the fridge back slightly by lengthening its front “feet.”  Once he left, I leaned the fridge back so that Priscilla could spin the pads of the feet, but she found she was no longer able to get down and do even this.  She fled the kitchen in tears.

After giving her a few moments, I went looking for her.  I was pretty sure she’d gone into our bedroom, but it was empty.  Apparently.  On a hunch, I opened the closet door.  There she was, too despondent even to face the light of day.  I sat on the floor on the other side of the door and we started talking things out.  It was evident after a while that God was strengthening her faith, and her fighting spirit returned.  She got up, went back out to the kitchen, and sorted through some fruits and vegetables a student who’d be away over the Christmas break had left with us.  From them she created an asparagus-apple soup, with roasted sweet potatoes, for supper that night.

From experiences like these, she realized, as she would say repeatedly over the next three years, “It’s one thing if the disease takes something from you.  But don’t give anything away.”  Never mind what she couldn’t do any more.  So long as she was still doing what she was able to do, the disease wasn’t winning.

On our trip to New England in July, she’d gone shopping with my parents and helped them pick out some bolster pillows for their sofa.  These needed to be covered to match the living room decor, and Priscilla said she’d make the covers.  She measured the pillows and bought some fabric. Nothing happened with this project for several months, understandably, because of her hospitalization and testing and our ongoing Grad IV responsibilities.  But early in December, she pulled out her sewing machine in the hopes of getting the pillow covers done in time for Christmas.

This ultimately didn’t happen, because of the appointments and tests that continued right up until we left on a long holiday trip.  Early in the new year we called my parents and Priscilla explained why the covers weren’t done yet.  “We understand,” they said. “Just send us back the fabric and we’ll have someone else make them.  We don’t want you to have to worry about this with everything else you’ve got going on.”  But Priscilla was determined to finish the project.

We went to a fabric store that same day to get the remaining supplies she needed.  A couple of weeks later, though she had to battle with fatigue and weakness, and find new ways to do many things, she finally shipped the covers out.  Soon we heard back from my parents.  “They fit like a glove!” my mother exclaimed, marveling that Priscilla had still been able to follow so accurately measurements that she’d taken six months earlier, when she’d been in much better health.  We explained why it had been important to Priscilla to finish the project, and my mother understood.  “She certainly didn’t give anything away on this one,” she said.

Around this same time Priscilla decided that she’d like a “fresh look” in our bedroom, suspecting that sooner or later she’d be spending much of the day in there.  Earlier she’d seen a sky-blue flannel top sheet in a thrift store and bought it because her color memory and decorator’s eye told her it was the same shade as some little blue flowers in the pattern of our duvet cover, which otherwise featured red and white roses in green foliage.  She knew these little flowers would really “pop” (as they say in the trade) if she could put together an ensemble with the blue sheet.  She already had a white bottom sheet; now she wanted to find a king-sized white flannel top sheet that she could cut up and sew into four pillowcases.  She went back to the thrift store.  That day there was only one sheet in the whole place.  It was king-sized white flannel top sheet.  After a few more determined sessions at the sewing machine, the ensemble was complete.

I should specify that this was actually Phase 2 of the “fresh look” for the bedroom.  There’s a story behind the duvet cover as well.  In the summer of 2011, after her symptoms had started, but before they became troubling, Priscilla decided she wanted to create a whole new treatment for the bedroom.  She went to thrift stores (where else?) looking for fabric, but found none.  On her way home, however, she stopped at a yard sale.  She found some small pieces of fabric in the “free box” and pulled them out.  The homeowner saw her examining them and said, “If you’re looking for fabric, I’ve got some more here.”  It was the red-and-white rose material, and there was more than enough for her purposes, though it was in irregularly sized and shaped pieces, so that perhaps the most demanding part of the project was to figure out how to make sure the pattern matched and the pieces were symmetrical on the duvet cover.

Priscilla made new curtains from the material as well, but one part of this project remained unfinished.  She still wanted to sew European pillow shams to put on large square pillows to set against the headboard.  Later in the spring of 2013, therefore, I helped her figure out how to cut the remaining fabric into the pieces she needed to make these shams. About a month later, though she reported that her foot could hardly work the sewing machine pedal any more and that this would probably have to be her last home decor project, she finished them as well.

 

AUDIO VERSION

 

In mid-November 2012, the lighting of the Christmas tree for the state of Michigan took place on the lawn of the Capitol in Lansing, as the culmination of an evening of music and celebration known as “Silver Bells in the City.”  Particularly because many of our international students were interested in the event, a group from Grad IV decided to attend.  We weren’t free to leave just when they did, so the plan was for the students to go downtown, find a place for dinner, and text or call us to let us know where we could meet them.

Previously this would have been no problem.  We would have driven to within 6 or 8 blocks of the place and then either walked the rest of the way or hopped onto a shuttle bus, because many streets would be cordoned off.  But now Priscilla’s mobility was so limited that we had to try to drive right to the restaurant.  This was a long and frustrating endeavor.  We finally completed a circuitous route to get there, only to discover that the students had finished eating by then and were on their way to another place for dessert.  (We’d told them not to wait for us, just keep us posted on their plans.)  The same thing happened when we tried to join them at the next place—by the time we could get there, they were gone, this time heading to someone’s apartment.  At that point we gave up, realizing that we were no longer able to keep pace with the student lifestyle.

This was a concern that had actually been emerging for some time, as far back as Grad IV’s New Student Outreach in the fall of 2011, when Priscilla’s symptoms were first beginning to make themselves felt.  On Labor Day we spent from morning till evening putting on a cookout at the InterVarsity House.  Four days later we were out until 2 am at the barn retreat.  We asked each other several times then whether we weren’t getting too old for this.  It was an honor and a privilege still to be doing front-line student ministry as campus staff workers in our mid-50s, but perhaps we were reaching our limits.  What we didn’t realize at the time was that disease, not just aging, was beginning to set those limits.

We asked our supporters to pray that God would sent a full-time staff worker for Grad IV.  We thought it would be better for the chapter and for us if we could serve alongside such a person, instead of being the primary staff as volunteers.  In the months that followed a young woman applied for the position and was accepted.  She attended her first Grad IV event, a summer Bible study, in June 2012, just two days before Priscilla was examined for the first time for her symptoms.  This new staff worker still needed to raise her support, so we planned to make the 2012-2013 school year one of transition.  We’d slowly hand off to her the responsibilities that went with her position, but stay in an active supporting role.  For example, she observed us conducting the first couple of monthly student leaders’ meetings that fall, and in November she began to lead those meetings herself.

That same month the Silver Bells incident occurred and it forced us to revise our thinking.  We decided that this would have to be our last school year working with Grad IV with any definite responsibilities.  After that, we’d help with whatever we could.  Living out the disease faithfully would become our new “priority activity,” as this would eventually require most or all of our time and energy.  But one thing would not change:  We would continue in the way of life God had called us to, relying on Him by faith to provide our needs, trusting that He would demonstrate His continuing faithfulness in these new circumstances.

Priscilla resolved to “finish strong.”  She had always made at least one large main dish for our monthly potluck dinner-and-a-speaker events, to ensure that there was enough food for everyone.  For the meeting in January 2013, she was determined to make chicken shawarma, at a student’s request, though she’d never attempted it before.  Both while she was cutting up the chicken so it could marinate, and then while she was cooking it, she had to sit or lie down at frequent intervals to rest.  In the end it took six hours to prepare the dish.  But she wanted to continue her hospitality ministry for as long as possible.  “It’s my pride and joy,” she explained.

The semester finished strong as well.  Students kept joining our Bible study that spring until all twelve of the chairs were filled that our hostess had insisted back in the fall, by faith, that we would need.

We’d started going to a new church, closer to where we lived.  We felt at home there right away because many of the Grad IV students, the new staff couple, and our faculty advisers attended there.  In fact, they had all encouraged us to visit, saying we’d really like it.  They were right.  Every three months this church got together with its sister churches for an evening of worship and sharing called “Fire By Night.”  We attended this gathering for the first time at the end of March 2013.

There was an opening worship set, a designated time for sharing, and then a closing worship set.  Towards the end of this last part, one of the pastors broke in and said that he’d just gotten a “word from the Lord” that he wanted to share.  (These were Vineyard churches, so they were open to this kind of thing.)  He said that there were some present who were “coming to the close of a season in their lives,” and he prayed that God would bring them to closure well and lead them into their next season.  There were probably a couple of hundred people present and we didn’t know how many of the rest of them this might apply to, but it certainly applied to us.  The message was underscored when we got home and noticed that the title of the historical novel Priscilla had just started reading, lent to her by a friend, was Fire By Night.

If I had to name the day on which we gave up our official responsibilities (though we would continue to help out wherever we were able, and to meet with students individually), it would be the day earlier that same week when we arranged to meet with the new staff worker before prayer meeting to discuss who could pick up each task we’d formerly been doing.  For example, we’d need to find someone to take custody of Priscilla’s treasured bin of hospitality supplies, which she kept ready for any occasion:  paper plates and napkins; plastic tableware; coffee, tea, and hot chocolate; serving spoons; knives and cutting boards; etc.  I noted in my journal that Priscilla was in “much emotional distress” in the days leading up to this meeting.

We’d planned to have our talk inside the MSU chapel, where we met for prayer, but it was locked, with a note from the caretaker that he’d return soon.  So we talked in our car instead.  We’d just about finished the conversation when we saw him unlocking the door.  We followed him inside and saw two large floral arrangements in the chapel.  “What are those?” we asked.  (We probably wouldn’t have had the opportunity to inquire under other circumstances.)  “Oh,” he replied, “they’re left over from a wedding.  It’s been three days and no one has come for them, so I was going to throw them out, unless you want them.”

The flowers were all white.  Priscilla, as an events florist, had worked successfully with flowers of all types and colors, but white ones were her favorites for herself.  Her bridal bouquet had been all white, and she would later request white flowers for her memorial service.  So naturally we were delighted to accept this offer.

We took the arrangements home and Priscilla divided the flowers that were still useable into four smaller bouquets, which she put in vases in our living room, dining room, and bedroom, and in her office.  Everywhere she went around the house in the days that followed, she had a reminder of the love of her Heavenly Father, who’d understood why she was feeling distressed, and sent her white flowers.

AUDIO VERSION

 

I said last time that even though living out Priscilla’s disease faithfully would now become our “priority activity,” we would continue in the way of life God had called us to, trusting Him by faith to provide our needs.  As I explained in an earlier post, one of the principles of that life is, “You must do your part.”  So I would keep taking freelance writing and editing assignments for as long as time and energy permitted.  Over and over again, God timed these assignments so that they came just when I did have the time and energy for them.

For example, on Monday of the same week when Priscilla made the chicken shawarma, I completed my last remaining freelance assignment.  There were now some Grad IV tasks I wanted to catch up on—for example, annotating the group’s email list for our new staff worker, to explain who was a current student, who were alumni who were still in touch with the chapter and when they’d graduated, etc.  So I asked our small group to pray that God would send more work, but only at the end of the week, once I’d “cleared the decks.”  On Friday, I got to the end of my to-do list.  And that same day I was offered a long-term freelance writing assignment that I could work on as time permitted.  On Saturday I was offered some similarly flexible long-term consulting work.

As I explained in my opening posts, I finished that writing assignment, and there was also a pause in the consulting work, just as the wood was delivered for the floor renovation we did in June 2013.  And just as that renovation was winding down, I was offered some new editing work by another client.  We were planning a trip to New York City shortly after the renovation (I’ll tell about that starting in my next post), but as it turned out, the client wasn’t able to have this work ready for me right away.  So I was able to give my full attention to packing and preparing for an adventure that ultimately posted many logistical challenges.  But once we got home and were settled in again, the client sent me the material.  As I put it in my journal, “The job had repeatedly been put on hold and now it came on line just when I needed it.”

This kind of thing would continue for as long as I had time and energy available for freelance work.  Some months later I was offered a large proofreading job (600+ pages).  I accepted it, though I was somewhat concerned about when I could start it, since we had visitors coming soon for several days, and getting ready for guests was becoming more complicated and time-consuming.  But I needn’t have worried.  As I explained in a journal entry written just after this visit, “In the providence of God, always delightful although less surprising after repeated manifestations, the book I was supposed to proofread was finally ready—it arrived by email right around the time our guests left!”

I worked on this project as opportunity permitted and it took about a month to complete.  Literally just as I sent out the invoice for it, I heard from a different publisher about another editing project.  I gave them a quote for the work, but it took them longer than usual to approve it.  I got the go-ahead right after another two sets of guests had come and gone.  (I’ll explain in a later post why we were getting so many visitors at this time.)

I said in my previous post that we believed God would “demonstrate His continuing faithfulness even in our new circumstances.”  Episodes like these certainly made that faithfulness evident.  But the people who felt God had called them to support us in our ministry with Grad IV also remained faithful, even as our situation changed.  They continued to sustain us by their prayers, friendship, encouragement, and gifts.  Here’s one example.

In April 2013 we were facing some major car repair expenses.  These were beyond us, so one morning we asked God to put it on someone’s heart to help us with them.  Later that same day we got a call from some longtime friends of our work.  They told us that they really wanted to “invest in our ministry” by assisting us financially.  (This was even after we’d sent out an update, earlier that month, explaining that “Priscilla’s symptoms have progressed to the point where we now need to delegate some of the responsibilities we formerly fulfilled.”  In other words, we were slowly having to give up the ministry.)

These friends started asking about several specific things we might need help with.  In each case, in response, we told them truthfully that we were okay in that particular area.  “Well there must be something!” they finally said.  At that point I felt free to mention the car repairs, and they gladly agreed to cover them in full.

 

AUDIO VERSION

When we came inside from the “Jesus Party” cookout that we hosted for our church on June 5, 2013, we didn’t just find the phone message from our nieces that started the ball rolling for our floor renovation. We also found an email invitation to attend a 40th anniversary celebration for some good friends in New York City in less than a month. We knew the logistical challenges would be great at this point, but we both really wanted to go. So we accepted the invitation. We trusted that the renovation would somehow be accomplished before then. (It was.)

At the start of the year, the same woman who’d given Priscilla the canes spotted her on a return visit to the thrift store and called her aside. “I have something for you,” she said, disappearing behind the familiar door of the lending closet and emerging with a walker that had hand brakes and a built-in seat. A real deluxe model. “I don’t need that yet,” Priscilla protested. “Then take it for when you do need it,” the woman responded. “I want to give it to you while it’s still available.”

Priscilla found that the walker actually was helpful right away in certain situations. She brought it with her to our next Grad IV large group meeting, for example, so that she could sit down and rest at intervals while setting up and serving the meal. We also found that I could push the walker along while Priscilla was sitting in the seat facing me, and this could spare her some weary slogging. Once we had to go down a long, steep ramp to reach a spot where our student leaders were meeting. Priscilla said, “There’s no way I’m going to make it back up that ramp.” So I pushed her up it in the walker instead, and then all the way across a campus quadrangle back to our car.

The walker did have a label that said in large letters, “NOT TO BE USED FOR TRANSPORTATION.” We didn’t yet appreciate how important this warning was.

On the morning of Thursday, July 4, 2013, we headed east for New York City, sharing the driving. When Priscilla got her first turn behind the wheel, a smile spread across her face. She realized that could move in any direction she wanted, fast or slow, stopping and starting at will. Her mobility had been restored. Independence Day, we agreed.

At one rest stop the route to the bathrooms seemed long and steep. We’d brought along the walker and Priscilla asked me to push her in it. One of the concrete pavement slabs had sunken a bit, creating a “curb” where one wouldn’t be expected. The walker wheels stopped dead when they hit it and Priscilla started to flip over backwards. I pushed down on the handles with all my weight to try to stop this, but they had the mechanical advantage.  (Think “lever.”)  I was catapulted into the air over Priscilla and we both tumbled onto the pavement.  Mercifully, neither one of us was seriously hurt.

No other cars had been nearby when we parked at the rest area.  But just as we were falling, cars pulled up on either side of ours.  Their drivers, seeing what was happening, rushed out to help us get up.  (Our “guardian angels,” we would later call them.) Priscilla had cuts and bruises that I was able to bandage up with supplies from our car’s first aid kit. At the last minute I’d brought along two flexible ice packs and they were still cold enough to prevent swelling and bruising. I’d also put in our transport wheelchair at the last minute, even though I’d thought we probably wouldn’t need it. But now we both agreed that the walker was “not to be used for transportation,” and we were glad we had this wheelchair with us.

The previous summer we’d driven from Michigan to the East Coast in one day. But now, knowing we’d make slower progress, we’d booked a hotel halfway. After detouring slightly to meet my sister and her husband for dinner in the city where they lived, we returned to our main route and set up for the night in our hotel. Showering was our main safety concern these days (besides curbs) and we’d brought along a collection of adaptive equipment, much of it also courtesy of the lending closet. By fastening a handle tightly to the side of the tub and setting our own adjustable stool inside, we were able to make the shower in this regular room “handicapped accessible.” We had some other equipment with us that didn’t quite work here, but we realized that it might be what was needed at the next place. We were prepared to improvise.

The next morning we resumed our travels. We had lunch at a rest stop and, realizing it might be complicated to find food in New York City with limited mobility, we also bought a 12-inch sub to share for supper once we got to our hotel there. It appeared that most of the city had taken the day off to get a four-day weekend. We sailed across the George Washington Bridge and traveled the entire length of the Cross-Bronx Expressway without having to stop once, an experience unparalleled in my lifetime. When we got to our hotel, where we’d stay as guests of the anniversary couple, I helped Priscilla into the transport chair and started loading up a luggage cart. A doorman came out and asked if he could help with that. “Actually,” I said, “would you please take my wife into the lobby?” He brought her inside and then returned for the cart while I drove the car down into the parking garage.

I found my way up to the lobby and discovered Priscilla still being chivalrously attended by the doorman. I “cut in” and took over her chair, leaving him to bring the luggage cart as we went up to the room. After a two-day cross-country trip that had had its traumatic moments, we were glad to hunker down and enjoy the supper we’d brought, with some hot chocolate from a Massimo machine we spotted in the lounge down the hall.

To be continued.

AUDIO VERSION

 

This post continues the story begun in my previous post.

Our friends’ 40th anniversary was celebrated the next day at a restaurant about a 15-minute drive from our hotel. The event started at 11:00, giving us plenty of time to get washed and dressed in a different environment that required new adaptations. This time a handle with suction cups attached to the shower wall created accessibility.

We found a parking spot right in front of the restaurant and Priscilla went in with her walker. It was great to reconnect with the celebrating couple and with their family and friends, many of whom we also knew. For the next three hours we all shared toasts, memories, and good wishes while a multi-course dinner unfolded before us. Finally the couple said their goodbyes and left for the next event of their day, a birthday party for one of the family members. This allowed us to return to our hotel. We promptly fell asleep for the rest of afternoon, still weary from our travels. We hardly needed any supper after the feast we’d enjoyed, but the lounge down the hall was serving hors d’oeuvres that evening and we sampled a few of those. We were grateful to make it an early night.

It was a good thing we’d had the chance to rest and sleep, because we had big plans for the next day. It began with breakfast at the apartment of a couple we’d first met some fifteen years earlier when they were both college students attending the church we served in Massachusetts. Now, of course, they were “grown ups,” working in the city and living in Jackson Heights.

There were no parking spots available in front of their building, so I had to leave Priscilla at the door with her walker and go hunting. She asked a passer-by for help and he opened three doors for her and pointed out the tastefully disguised elevator entrance. As I circled the block, I began an appeal to God: “Now I’m sure you’ve got all the parking spots in this neighborhood . . .” And just then I came across an empty one, under a shade tree (a mercy in July), a short walk from the apartment.

After breakfast two more couples, one with three children, joined us. These were more people we’d first known when they were students at the same college. One of them led us in worship with his guitar. Then we all gave our latest news, and we prayed for one another. In light of what we shared, plans to go out to a nearby Peruvian restaurant for lunch were modified and a delegation went out to pick up the food instead. We wanted to have communion together and after a brief theological deliberation we decided it would be all right to do this with dessert. As the minister present, I officiated. I intoned, “The Lord Jesus, on the night he was betrayed—I say this respectfully—took pie . . .” We agreed that we had contextualized the observance.

We didn’t want to leave these dear friends, but we’d made arrangements with the anniversary couple to see the World Trade Center memorial with them, so we said a reluctant goodbye.  The group all escorted Priscilla down to the street while I fetched the car.

We drove back to our hotel, where the couple was waiting for us. Priscilla got into their car while I put her walker in our trunk, pulled out the transport chair, turned our car over to the valets, put the wheelchair in our friends’ trunk, and got in next to her.

The memorial was probably the most handicapped-accessible place we saw all trip, both in terms of layout (ramps, etc.) and accommodations such as no-waiting admission. Still, we wouldn’t have been able to do the tour if we hadn’t thrown in the transport wheelchair at the last minute. And that would have been a real shame, because the memorial was such a moving and eloquent tribute to sacrifice and bravery. Our friends had lost several co-workers on 9/11 and seeing their names engraved on the monument was especially poignant.

Afterwards they took us to “grandmother’s house” in Brooklyn for dinner, a Sunday-night tradition for them. We were honored to be included. Some of the other family members who’d been at the party the day before also came, and this gave us a further opportunity to visit. Our hosts finally dropped us off at our hotel at the end of a long and happy day.

Now we just needed to make it back home. We left the next morning and once again stopped halfway, this time in a location chosen to make it possible to meet the following morning with a West Coast friend who was vacationing with her family nearby that same week. After a three-hour visit with her that still seemed too short, we headed out on the final leg of our trip.

We were sharing the driving, as we’d done on the outbound leg.  Going through Cleveland we hit a slowdown and Priscilla, who was at the wheel, found it too demanding to keep alternating her right leg between gas and brake. She was especially concerned that her leg would give out on her when it needed to be holding the brake.  So she pulled over, we switched places, and I drove the rest of the way home. This could be viewed as another milestone in disability, the moment when at least stop-and-go driving became inadvisable. But we preferred to look at it as an important safety consideration we’d become aware of without anyone being harmed.

We were very grateful to have gone on this adventure, seen so many sights, and visited with good friends, even though it had required constant adjustments and improvisations. Though we didn’t know for sure, we suspected (correctly) that this would be our last time traveling so far from home.