The Keeping of the Charge



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.

Amy Carmichael
Amy Carmichael

“This may all go away as mysteriously as it came.”



The neurologist had seen Priscilla for the last time on a Monday.  The following Saturday morning, New Student Outreach (NSO) for Grad IV would begin at MSU’s Graduate Resource Fair, where our chapter would have a booth.  On Friday, Priscilla and I went to get copies made of some handouts for the fair. Since we had some time in the car, she decided to try to reach a friend of ours who was on the medical school faculty at the University of Michigan, to find out whether he could recommend a particular neurologist we should see there.  His specialty had him over at the hospital and difficult to reach much of the time, but when Priscilla called his cell phone he actually answered.

She briefed him on her situation and, with her permission, he looked up her records.  He discovered that her referral appointment was eight months in the future.  “I’ll be dead by then,” she responded.  “Tell me more about your symptoms,” he urged.

Over the next fifteen minutes, as we drove to the copy shop and then sat in its parking lot, he basically gave her a consult over the phone.  When he learned that the muscle weakness had begun in her legs but was now rapidly spreading to her upper body, he considered it possible enough that this might be “ascending paralysis,” a complication of a certain auto-immune disorder that could be fatal in a short time, that he told us to clear out our schedules and get to the University of Michigan emergency room as soon as possible.

We were both shaken by his advice but agreed we should follow it.  We decided, however, that “as soon as possible” would have to mean after that weekend’s NSO activities.  We’d agreed to host a follow-up social on Saturday evening for students we met at the Graduate Resource Fair.  This kind of hospitality outreach was what Priscilla lived for, and if she were going to die anyway, she was prepared to die while hosting students if necessary!

After an opening NSO weekend that got us “off to one of the best starts we’d ever had” (as I put it in my journal), we checked Priscilla into the University of Michigan hospital, less than a week after her neurologist had referred her.  During the three days she was there, they repeated the blood tests, studied the MRI images we’d brought with us, and gave Priscilla a series of examinations.  Finally a faculty neurologist, the head of the team that had been working with her, brought in their report.

“We don’t have a diagnosis for you,” he began.  “We know you have something, but we’re looking at a basically healthy central nervous system.  People in your situation tend to do well over the long term.  This may all go away as mysteriously as it came.”

He said he’d understand if Priscilla felt frustrated; they sure did.  “We get the 1% of patients nobody else can diagnose.  You’re in the 1% that we can’t diagnose.  And that’s frustrating.”  Then off they went, leaving us as perplexed as ever.  While Priscilla was still with them they would do a somatosensory evoked potential (SEP) test, which might at least give them a general idea of what category her disease fell into.  They would also repeat the spinal MRI because they could do this at a much higher resolution than the “outside hospital” had been able to do.  But both of these tests showed nothing unusual.

Priscilla was referred to an even more specialized neurological diseases clinic operated by the university, with a first appointment in two months.  When she was discharged she wrote, in large letters on the white board of her room, an upbeat thank-you note to everyone who had helped her.  Though she was weakened by days of tests and nights of broken sleep, she refused a wheelchair and insisted on walking out the same way she’d come in, under her own power (with a walker).

On the drive home she realized that we’d be able to make it back in time for the next NSO event, a prayer walk around the Michigan State campus.  We had a quick supper and then went to the rendezvous point from which teams were being sent out on different routes to “pray on site with insight” (as Graham Kendrick describes prayer walking). In our case it was a “prayer drive.”  But the hospital visit hadn’t caused us to miss even one minute of NSO.

So would Priscilla’s symptoms really go away as mysteriously as they’d come?  During her first evening in the hospital, while she was still in the ER waiting for a room to open up, I was encouraged to go to the cafeteria and get some supper for myself, because “it could be a while.”  (They’d already fed her, as a patient.) I sat at a small table by the windows at the deserted far end of the cafeteria so I could get cell phone reception and text out an update to a group of friends we’d asked to pray.  On the table next to mine was a complete copy of that day’s edition of the Detroit Free Press.  The news and sports sections had been tucked inside; the lifestyle section was displayed on the outside.  Its lead article was on adjusting to widowhood.

Was it just a coincidence that this was waiting for me, at that time and in that place?  Or was it a warning not to entertain any false hopes, with some practical counsel for the more distant future?  I read through the article several times.

Grad IV members plot their prayerwalk routes on a campus map.
Grad IV members plot their prayerwalk routes on a campus map.

“Don’t worry, you don’t have Lou Gehrig’s disease.”



On our way home from the East Coast we stopped for another visit with our friend who was a doctor.  She and Priscilla went shopping. The progression in Priscilla’s symptoms was obvious as she struggled to get around the malls.  “You’ve really gone downhill in the past two months,” observed our friend, with some alarm.  Maybe this wasn’t just a combination of minor, treatable conditions.

We had only two days back in town before we’d have to travel again, to the funeral of a great-aunt. (Priscilla was the relative who’d lived closest and she’d been her family advocate.)  On the first of these days she had a physical therapy evaluation and was assigned for future appointments to a therapist who specialized in neurology patients.  On the second day she had her visual evoked potential (VEP) test at the neurologist’s office.  That same evening we headed back out on the road.

We stayed with some other good friends who lived less than an hour from where the funeral would be held.  They had a loft guest room that was reached by a steep staircase.  We carefully planned our bedtime routine so that Priscilla would only have to climb it once.  Priscilla read the Scriptures at the funeral, leaning on the podium for support, and at the cemetery she had to hold onto me to walk safely over the uneven ground.

Upon our return, Priscilla was scheduled to see her new physical therapist twice a week.  But the treatment had to be suspended after only three sessions.  It had been prescribed to try to strengthen her muscles, but because her condition was so unstable and still undiagnosed, the therapist became concerned that working the muscles could actually damage them instead.  But she did show us how to do range-of-motion exercises (ROMs) at home that would keep Priscilla’s joints from painfully locking up.  In one form or another, we would do ROMs every day for the next three and a half years.

We then made a four-day trip to Nashville to do premarital counseling with a Grad IV alumni couple whose wedding I’d be performing in the fall.  They lived in a more distant city and we were meeting halfway, hosted by some mutual friends.  When we got back home we had one day to catch up on life before Priscilla spent three days arranging flowers for the wedding I’d be performing that weekend of another Grad IV couple.  This was a joyous occasion, the kind of thing we were in this ministry for, but I also noted in my journal that Priscilla was “very tired and staggering badly” by the end of the cake-and-punch reception.

Weekend festivities over, we saw the neurologist on Monday.  He started by telling us that Priscilla’s VEP was normal.  Together with the absence of lesions on her brain or spinal cord, this seemed to rule out MS pretty definitively.  So he did an electromyogram (EMG) to check for any neuromuscular disease such as ALS.

Priscilla described this test as “medieval torture.”  It involved first running electrical current between electrodes attached to her legs at various points to check nerve conductivity.  Next, the neurologist stuck needles deep into her muscles to measure their electrical activity.  She screamed aloud in pain for much of the test.  But its results, too, were normal, and perhaps that knowledge was worth the price of admission.  (“At least you’ll never have to do that again,” I told her afterwards.)

This seemed to leave on the table only the neurologist’s theory about latent effects from a car accident twelve years earlier.  “We had those reports sent to you,” we assured him, and he got his staff to bring him the records.  He started paging through them, but he stopped when he got to a CAT scan report.  It showed and stated clearly that while Priscilla had suffered the compression fracture of a vertebra, there had been no evidence of any spinal involvement.   He crunched the report up into a ball and tossed it into a nearby trash can.  “Well,” he said, “that’s that.”

He announced that he was unable to diagnose and asked us whether we’d like to be referred to a more specialized hospital for further investigation.  He suggested the Mayo Clinic, the Cleveland Clinic, or the University of Michigan.  We chose the last option because it was the closest, and because the university hospital was nationally renowned for its neurology department.

Priscilla turned around on her way out the door and looked ominously across the exam room at a framed photograph the doctor had hung on the wall.  It was of the great Yankees slugger Lou Gehrig, whose name has unfortunately become synonymous with ALS.  The doctor followed her gaze and guessed her concerns.  “Don’t worry,” he said, “you don’t have Lou Gehrig’s disease.”

A photo of Lou Gehrig like this one hung on the wall of the neurologist’s examination room.

“I’m not dead yet!”



On May 6, 2012, we were taking another one of our walks around the neighborhood when it began to rain.  There was a stand of trees a short distance ahead and we decided to run for shelter.  But Priscilla found she couldn’t run.

This was the date we looked back on ever afterwards as the one on which we both knew for sure that, as we put it then, “something was definitely wrong.”  In fact, we both had the ominous feeling that Priscilla had a serious disease that could even be fatal.

A couple of weeks later we went to the wedding of a good friend’s daughter.  Priscilla was barely able to climb the stairs to the reception hall.  She customarily danced to just about every song at weddings, but her legs wouldn’t support her this time.  We danced to only a few slow numbers as she clung to me for support.

In the providence of God, our friend, the mother of the bride, was an experienced and wise doctor.  The day after the wedding, after sharing sandwiches left over from the luncheon Priscilla had catered for the bridal party, we described her symptoms.  When she walked, she felt as though she were plowing through waist-deep snow.  She was having difficulty keeping her balance and getting up from a squat.  There were some other things we thought might be significant.  Her leg muscles had begun to twitch.  She’d noticed that she was now always the last one to finish eating, as if swallowing was beginning to be a problem.  Often she couldn’t come up with the right word, or she’d say another one by mistake.

Our friend listened carefully and sympathetically, and then observed that while these symptoms, if taken together, might indeed suggest a serious neurological condition, they didn’t necessarily all have the same cause.  The muscle weakness that was creating the walking and balance issues might be due to a B12 deficiency that could be resolved with supplements, or to a musculoskeletal problem such as spinal stenosis that could be treated by surgery.  The swallowing problems might be caused by something as simple as acid reflux.  Muscle cramps and forgetfulness were symptoms of hypothyroidism.  And so on.

This made a lot of sense to us.  We’d been feeling so hopeless that we hadn’t even made any appointments with doctors, but now we resolved to pursue a diagnosis actively.  Priscilla’s doctor scheduled her for an appointment in four months.  But within a few weeks, when the twitching spread to her arms, we called the office in some desperation and the nurse practitioner saw her that afternoon.  She followed the exact course our friend had sketched out, first ordering blood tests to investigate B12 deficiency and hypothyroidism.  If these tests turned up nothing, they’d do an MRI to check for spinal stenosis.  If non-neurological causes seemed to be ruled out, Priscilla would be referred to a neurologist.

Five days later, the nurse practitioner called us with the blood test results.  They were all normal.  They’d decided to do a liver panel with the blood they’d already taken, as problems with the liver could lead to muscle weakness, but this was a long shot.  They were clearly thinking in a different direction.  The doctor wanted to do a full spinal MRI and schedule Priscilla to see a neurologist right away.  The MRI would detect any spinal stenosis, but it would also be important for diagnosing a condition such as multiple sclerosis (MS).

We told them we were leaving the next day on a trip to Colorado for a wedding and then a vacation.  “When are you getting back?” they asked.  Monday evening, July 2, we answered.  They scheduled the MRI for the next morning.  In the space of half an hour we then had a flurry of calls from our doctor’s office and the neurologist’s office to set up Priscilla’s first referral appointment.  All this from a practice that had originally considered four months soon enough to see her.

This created such an impression of urgency that we lay down in bed, dazed, trying to come to grips with the implication that maybe she did have quite a serious disease after all.  But we at least managed to find some humor in the fact that while Priscilla was having difficulty even walking, the doctor’s office had cautioned her not to waterski or engage in any high-impact sports while in Colorado.

The next day, as we left on our trip, Priscilla bravely pulled her suitcase down the lengthy concourse of the McNamara Terminal at the Detroit airport.  This took so long and was so tiring that we nearly missed our flight.  We knew we’d have to do things differently when we got to Denver.  I resolved to try to arrange for a wheelchair at our arrival gate.  No need:  we saw a porter pushing an empty one right towards us just as we entered the terminal!  We flagged him down and explained our situation, and he was happy to take Priscilla to the baggage claim and the car rental island.  He’d been on his way back from delivering a passenger to a nearby gate.

Priscilla had her spinal MRI the morning after we returned and she saw the neurologist three days later.  The MRI had shown no spinal stenosis, but there were no lesions indicative of MS, either.  The neurologist wanted to do more blood tests, to check for Lyme disease and vitamin E deficiency, and also an MRI of the brain to see whether there were any lesions there.  An MRI appointment opened up for that afternoon and we gladly took it.  We wanted to get to the bottom of this.

Early the next week we got a call from our doctor’s office saying that this MRI had detected “some minor scarring” on the brain.  They were concerned enough that they got us back in to see the neurologist two days later.  But he wasn’t worried.  “Those aren’t fresh lesions,” he explained, adding that “everybody has some scarring on their brain by the time they get older.” He didn’t think Priscilla had a neurological disease.  Instead, he theorized that her spinal cord was only now manifesting damage it had received in a car accident twelve years earlier, when Priscilla had suffered a compression fracture of one of her vertebrae.  He asked us to have those medical records sent to him.

But just to be safe, he scheduled a visual evoked potential test, another important tool for diagnosing MS, as well as an electromyogram (EMG) to check for ALS (Lou Gehrig’s disease).  These tests would have to wait until the end of the month, however, because we and he were about to leave on already scheduled vacations.

Our next trip that summer was to see my parents in Rhode Island.  While we had no diagnosis yet, most of the innocent potential causes had been ruled out, suggesting that whatever Priscilla had might be serious indeed.  But she was upbeat and determined to enjoy the trip.  “And I don’t want you moping around, either” she admonished me.  She cited Jesus’ parable about not fasting while the bridegroom was still present and insisted,  “I’m not dead yet!”

Once we got to New England, Priscilla went to the salon where she’d always gotten her hair done when we lived there.  She’d been wearing her hair past shoulder length, but now, suspecting she’d have less time and energy to care for it, she asked her favorite stylist to give her a “wash and wear” haircut.  When he was done I told him it looked great and with a nod he replied, “Every so often you need a change.”

The highlight of the trip came when, as an early birthday present to me, Priscilla treated my parents and me to a cruise that took us around Narragansett Bay to see its many lighthouses.  Afterwards my father took us to dinner at a bayside restaurant.  At his insistence that I should get anything I wanted because it was my birthday party, I ordered lobster.  If this was terminal illness, it was going pretty well so far.

At the Restaurant
At the restaurant after the Narragansett Bay cruise, Priscilla sports her new “wash and wear” haircut.

A new kind of work



“Does this mean you won’t be commissioning any more study guides for a while?”

It was six days before Christmas 2011.  I’d finally connected by phone with the editor at InterVarsity Press (IVP) who would now be overseeing the series of guides I was writing.  Biblica had decided to concentrate on what it identified as its “core competencies”—Bible publication, Bible translation, and Bible engagement—and so it had shut down its book publishing operation and transferred all of its titles to IVP.  By this point Biblica had contracted with me for 14 guides. They had been planning to commission 11 more.  But something about the way my new editor was talking made me realize I’d better ask IVP about their plans directly.

The answer was, no more guides for now.  As a not-for-profit Bible society, Biblica could afford to create resources in the hopes that people would find them useful, particularly since their work was underwritten by donors’ gifts.  IVP, a for-profit publishing house, needed to see a certain level of sales, which we hadn’t reached yet, to justify commissioning further guides.  In other words, the income I’d been counting on for the next two years had just evaporated.  Merry Christmas.

Priscilla at the winter wedding. We needed income, but first things first.
Priscilla at the winter wedding. We needed income, but first things first.

We were scheduled to leave in a couple of days for a two-week holiday trip that included a family wedding, so there wasn’t much I could do about this until we got back.  But in the new year I started contacting all the people I could think of who might give me work writing or editing.  I got two small nibbles.  For one job I eventually earned $500 and for the other $750.  This wasn’t going to support us through 2013.

Towards the end of January I wrote in my journal that I was “slowly sinking into a funk” because I’d “run out of leads to pursue.”  But now that I truly had done all I could, a cluster of gifts arrived.  Some were from friends who had already been supporting us from time to time in our work with Grad IV, though they had no idea of our new circumstances.  Other gifts were downright mysterious.

We received an envelope in the mail from people whose names we didn’t recognize.  It contained a supermarket cashier’s check that was for a generous amount, but which bore no personal information.  It took some creative internet sleuthing based on the envelope’s return address to track down who had sent us this gift.  It was from some relatives of a friend of ours.  We’d only met these relatives once, years before at our friend’s wedding.  Nevertheless, God put us on their hearts, and they responded generously.

Gifts like these took the financial pressure off while we got our new bearings.  Then freelance jobs started coming in.

In February, a doctoral student at Michigan State asked me to edit his dissertation.  (This was above-board and acceptable in his discipline, where what mattered was the data and analysis, not particularly the writing.  I’d heard of students in similar departments being told by their dissertation committees, “Why don’t you give this to an editor?”)  He and his committee liked my work.  He gave me more and also referred me to other students.  Eventually I got referrals from those referrals.

In March a friend put me in touch with a university literally on the other side of the world that was responsible for its country’s submissions to various international conferences.  Their papers were typically written in parts by different authors whose first language was not English.  Creating a unified whole in a consistent style was a challenge, but I told myself, “Never complain about having work, even if the work is difficult.”  This university became a repeat client.

In April a contact at Biblica asked me if I could come to Colorado Springs for a two-day consultation that would have a bit of follow-up afterwards.  They were moving towards using XML (Extensible Markup Language) to publish their editions of the NIV.  They were hoping this would model the use of this simple but powerful tool for translation teams around the world.  Biblica wanted me to facilitate the conversation between their IT specialists and the people who worked with those teams because I was familiar with HTML (a similar markup language) and had done translation.  The “bit of follow-up” kept expanding as the project, perhaps inevitably, reached into more and more areas of Biblica’s portfolio.  This XML consultation ultimately “extended” over two years.

In May a large church in town contacted me to see if I would adapt a commercial curriculum each month to suit the particular needs of their middle school teachers and classes.  And later in the year I started getting freelance editing assignments from a Christian publishing company.

The study guides had been a joy and a privilege to write.  I woke up every morning excited about getting right back to work on the latest one.  But the only way I’d been able to meet their deadlines, which loomed relentlessly every eight weeks, and still have time for our student ministry was to maintain a fixed and demanding daily schedule of research and writing.  My new work was flexible in terms of when it could be done during the day, and for much of it I could negotiate due dates with clients.  I had no idea that I would soon need to make Priscilla’s care my first priority and fit my work in around that.  I could never have done this if I’d still been writing the guides.  But God knew what was coming and gave me a new kind of work for a new season of life.

I’ve just looked over my financial records for those years and done a quick calculation.  It turns out that from these new sources of freelance work, I eventually earned 98.5% of the amount I would have been paid if I’d been contracted to write the remaining study guides.


Onset of symptoms



“For some reason it’s harder for me to walk to the pier now.”  Looking back, we were able to recognize that this was the moment when Priscilla first perceived the symptoms of ALS.

It was May 2011.  We had returned to Amelia Island, Florida, our favorite vacation spot, to celebrate our 30th wedding anniversary.  As had become our habit on these visits, each morning before setting up on the beach for the day we’d walk from our hotel to the fishing pier and back.  The round trip of about two and a half miles was almost exactly the distance we walked in our neighborhood several times a week.  But walking on sand was just that much more difficult than walking on pavement that Priscilla’s weakening muscles noticed the difference.

Fishing Pier
The Amelia Island fishing pier. (Photo by Priscilla, taken on our previous visit two years earlier. The header photo for this blog, of a rainbow, was taken on a walk to the pier during that visit.)

On this same trip she stubbed her toe several times.  She attributed this to the new pair of beach sandals she’d gotten for the occasion, although they were no different from the kind she’d always worn.  Later we understood that this was actually what’s known as “foot drop,” the failure of the leg muscles to lift the foot high enough when walking.

In July Priscilla had a frightening episode.  When she came in from an afternoon of gardening, she got a severe headache, with all-over stabbing muscle pain and nausea.  She had to take pain medication constantly for the next several days and hardly ate anything.  Slowly she resumed her normal routine, but it was weeks before she was sleeping through the nights again.  We thought perhaps she’d worked too long out in the hot sun.  The heat that afternoon likely had aggravated her condition and caused this flare-up of symptoms.

Toward the end of the summer Priscilla started having trouble getting back up when she squatted down to get something out of a lower cabinet in the kitchen, or when she knelt down to reach an item on the bottom shelf at the supermarket.  On one trip to the store she had to clamber hand over hand up the side of a shopping cart to get back on her feet.

By September it was becoming hard for her to bring the laundry upstairs from the basement.  “We all lose core strength as we get older” was her explanation.   She contacted my brother, who’d worked as a physical trainer, and he recommended some exercises that seemed to help.  We also joined the local fitness center and started swimming regularly.  Within a few weeks Priscilla was zipping up the stairs carrying one or even two baskets of laundry, and we thought our problem was solved.

But the strength gains from exercising were eventually overtaken by the progression of the disease.  In March 2012 we stayed with some friends for a few days and I plotted out a walking route the same length as the one we were still doing regularly at home.  But Priscilla had difficulty on this new route.  In retrospect I can see that this was because it went up and down hills—our neighborhood was flat.

Later that month she was babysitting for a “moms morning out” program at a church in town and she decided to teach the children to skip.  The only problem was, she wasn’t able to skip herself.  She could no longer lift her legs off the ground.

In April the Grad IV Bible study we’d been attending in a student’s apartment held an end-of-the-school-year potluck dinner.  The apartment was on the third floor.  Since the previous fall I’d been noticing that it took a little longer each week for Priscilla to climb the two flights of stairs.  Now, carrying a thick cut glass bowl filled with her famous Caesar salad, she wasn’t even able to make it up onto the first step.  She handed the bowl to me and said, “Go ahead, I’ll get up there eventually.”  She did, but we both knew we had a problem that wasn’t going away.

In the midst of all this we had an experience that, once again in retrospect, was a sign of God’s grace and presence.  One late afternoon back in October 2011 we were taking our usual neighborhood walk.  We’d just gotten to the end of our street and were about to turn left for the next leg of the route when we both spotted an unusual “sun bow.”  One rainbow-colored ring completely encircled the sun.  There were two larger arcs above it, one circling downward and the other upward.  We stood on the street corner for the longest time marveling at the sight.  We both felt that we hadn’t just happened to be in the right place at the right time to view an interesting atmospheric phenomenon.  We sensed that there was a message in it for us from God.

I can now understand what that message was.  The lower circle, the one around the sun, was whole.  The upper circle had become separated into two parts.  One of them arched upwards towards the heavens, while the other arched down from there, and their arms, so to speak, were reaching out to one another.  This was both a warning and a promise.  It was a warning that we were going to be separated by death.  But it was also a promise that in some way we would stay connected.  (I’ll explain in a later post how, I believe, those who “die in the Lord,” to use the biblical phrase, continue in fellowship and service with “us who are alive and remain.”)

At the time, however, this meaning was not apparent.  We both simply believed that the sign meant something new was about to begin  in our lives.

Drawing and description of the triple sun bow from my journal

Triple Sun Bow

You must do your part



I need to make one more observation about the approach we were called to take to funding our ministry with Grad IV, because it bears on the story that follows:  If you are to take this approach, you must do your part.  That is, you can’t just sit back with your arms folded and expect God to send in money.  You have to earn what you can to support your enterprise.

At Dohnavur, for example, the children all worked in the fields to help grow their own food, and they also made crafts to sell to support the mission.  Amy Carmichael wrote nearly 40 books during her lifetime, primarily to share “news of God’s great works” with the wider Dohnavur family around the world.  But the royalties on her books also brought in valuable income.

In the same way, when we became volunteer staff I also did a variety of freelance work. I continued consulting with the International Bible Society (Biblica), primarily for The Books of the Bible, the edition I’d helped them create in which the biblical books are presented according to their natural literary divisions.  I also got the opportunity to consult with the American Bible Society, and through them I was introduced to the Ecclesia Bible Society and became one of the translators of The Voice Bible.  A friend introduced me to The High Calling and I wrote more than a dozen articles for their web site.  Another friend connected me with Bible Study Magazine and I wrote another half dozen articles for them.

And then Biblica Publishing asked me to write a series of companion study guides to The Books of the Bible.  Beginning with John and Genesis in the fall of 2009, they envisioned me writing six guides a year through 2013, until we had 25 guides covering the entire Bible.  For each of these I would be paid a modest advance on anticipated royalties, with perhaps more to come if the guides sold well.  So by the end of our first year volunteering with Grad IV, we felt we had a stable, if very basic, supplemental income lined up for the next several years.  I would be able to do my part.

A complementary consideration, if you are to follow the approach we were called to, is this: You must also be a good steward.  You must make prudent purchases, “do it yourself” whenever possible, and be careful not to waste.  (Even after miraculously feeding five thousand people, Jesus gathered up the leftovers!)

Priscilla was the consummate do-it-yourselfer.  Her wide-ranging talents as a handywoman and her fearlessness in tackling any project, from cutting down trees to rewiring the basement, always kept our cost of living low and our thrill level high.

Here’s just one example.  At one point we needed to replace a turn signal bulb on our car.  If you drive into a dealership service area and ask them to replace a bulb for you, with minimum shop hours and prescribed labor rates, you can be looking at $30-50 for the job.  So we decided to park outside the dealership, go in to the parts desk, purchase the bulb we needed, and try to install it ourselves.  Unfortunately they were out of stock for our model year.  “But,” the parts manager told us, “if you’ll pull out the old bulb, I’m sure I can match it to something we have here.”  This took some finagling, but Priscilla eventually figured out how to get it out.  She went back into the dealership with it and after some time she returned, a smile spreading over her face.  The parts manager had matched our old Toyota bulb with a new Lexus one!  And Priscilla had said to him, “You’re going to give us a really good deal on this, aren’t you?”  The smile was because, in response, he’d sold us the $10.00 part for $2.99.

But so long as you’re doing your part, and you’re being a good steward, because your enterprise legitimately has the first claim on your time and energy, you can count on God to provide everything it needs that you cannot.

For Halloween 2008 the six InterVarsity chapters that were then active on the Michigan State campus cooperated to put on a big party for nearly a hundred international students, who were always eager to participate in American cultural celebrations.  Each chapter was responsible for one activity.  Grad IV was assigned to lead the pumpkin carving, and we were asked to provide 40 large pumpkins so that teams of 2-3 people could work together creating jack-o-lanterns.

At retail prices those pumpkins would have cost several hundred dollars, and neither we nor Grad IV had that kind of money.  So Priscilla approached the managers of the three largest grocery stores in our area and asked them to donate.  They all replied that they were open to doing this, but only when they thought that no more of the pumpkins they’d ordered in for the holiday might still sell.  So we’d have to wait until very close to the date of our event, which was Halloween itself, to see what happened.

It will be recognized that this strategy, by its very design, ruled out any possibility of a Plan B.  If no pumpkins were donated, this would be because they had all sold out, and so none could then be purchased, no matter how much money we might have.  But God gave us faith to trust and wait expectantly.

Two days before Halloween, one manager felt safe giving us 15 pumpkins.  On Halloween day, a few hours before our event was to begin, the other two managers donated over 30 more.  So in the end we had more than enough!

We’d also been asked to show the international students how to carve a pumpkin.  Priscilla was very skillful at this so we asked her to do the demonstration.  She realized that if she did it with a knife, it would take so long that little time would be left for the students to carve their pumpkins.  So she brought along her jig saw and created a jack-o-lantern in what had to be record time.  Our international friends then had a grand time carving and showing off their own creations.

Priscilla carves a pumpkin with a jigsaw.