“I’m not dead yet!”

AUDIO VERSION

 

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.

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

AUDIO VERSION

 

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.

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

AUDIO VERSION

 

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.

The Keeping of the Charge

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.

Amy Carmichael
Amy Carmichael

“I know God has a cane for me today”

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.

Priscilla helps lead the campfire singing at the barn retreat.
Priscilla helps lead the campfire singing at the barn retreat.

The significance of the number 187

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.”

The handles Priscilla attached to the sides of our garage door. (The railings were added later.)
The handles Priscilla attached to the sides of our garage door. (The railings were added later.)

“What could she possibly have?”

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 building in East Ann Arbor that housed the neurological diseases clinic.
The building in East Ann Arbor that housed the neurological diseases clinic.

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.