endless mercies

(This post continues the story I began in my last post.)

AUDIO VERSION

 

The master plan for our renovation was first to move the furniture from Priscilla’s office into mine so we could rip out the carpeting and put down wood floors.  We’d then move our bedroom furniture into her empty office and change the bedroom floor.  After putting that furniture back we’d move the combined office furnishings into Priscilla’s office, redo my floors, and finally put my office things back.

The only problem was, each of the rooms was so full of accumulated stuff that it couldn’t accommodate anything from the other rooms.  So when our nieces arrived a week after the church cookout, in addition to having some great social times with us, they spent many hours with Priscilla “sorting and purging” (as she put it).  I brought two car loads of donations—trunk full, back seat and front passenger seat piled almost to the roof—to thrift stores.  We sent further quantities of things home with our nieces when Priscilla’s sister came to pick them up.  She helped quite a bit herself with the “sorting and purging” before they all left.

Our nieces also helped me carry inside the half-ton of wood that was delivered to our driveway a couple of days after they arrived.  It needed a week or so to adjust to the temperature and humidity of our house before being installed.  The boxes of wood were eight feet long and there were twenty-four of them.  We stacked them in three tall piles in our front room.  There was no denying that this was really happening.

The day after our nieces went home, another friend arrived.  She helped me move all non-essential furniture out of the renovation area and down to the basement.  She also helped me move the remaining furniture from Priscilla’s office into mine, creating our first open room.  Families from our church signed up to bring meals for our whole crew almost every night they’d be here.  A young man in the church volunteered to come each day and help us move the furniture.  This was very helpful, since the job included moving the hundreds of books I had in four large bookcases out of my office and then back in again.

The day before our workers arrived, we heard from some longtime friends.  They did not know that we were going ahead with the floor renovation at this time.  But they told us that God had put Priscilla’s situation very much on their hearts in recent days, and that after considerable thought and prayer, they had felt led to give us a gift of a certain amount.  It was a very generous gift, one that would cover all the anticipated costs of the floor project!  There would likely even be something left over for another renovation we needed to do as soon as possible, making our master bathroom barrier free.

We set three goals for the week Priscilla’s two brothers (along with one brother’s wife and son) would be with us.  We wanted to finish the project by Friday evening, since everyone would need to head home by Saturday.  We wanted no one to get hurt.  And we wanted to have no major disagreements about how to proceed as the project developed.

The job was finished in the early afternoon on Thursday, in safety and in harmony.

One brother took the opportunity to go thrift store shopping later that day and found an excellent wheelchair for $30.  The previous evening Priscilla herself had visited local thrift stores with her other brother and his family and they’d found a transport wheelchair (fold-up, with small wheels) for $21.  We’d been looking at both kinds of wheelchairs and thought we’d have to pay hundreds of dollars for them.  But much more importantly than these great deals we got, how wonderful it was that Priscilla’s brothers could make an ongoing contribution to her care by helping her acquire this equipment that she would shortly need to use on a regular basis.  The vinyl armrest covers of the transport wheelchair were cracked, so the brother who helped find it gave Priscilla a “leather upgrade” by making and installing new covers from some black leather she had.

I’d finished my last freelance editing job on the day the wood was delivered. But the night before we finished the renovation, a client contacted me about another job he hoped I could start soon.  I’d been made available to help full time with the floor project for as long as I was needed, and now God was sending me more editing work.

On Saturday, after we’d sent the last of our workers off with our love and profound thanks, we got an email from some other longtime friends.  They also didn’t know we were doing renovations at this time, but they too said they had been led to give us gift.  It was another a very generous one.  Between it and what was left from the earlier one, we were well on our way to having enough money to renovate the master bathroom as well.

This whole experience is typical of the way God cared for Priscilla throughout the 4½ years she fought so courageously with ALS, and so its story makes a fitting overture to this blog.  I don’t know why she had to suffer so terribly from the disease and finally die from it.  But I do know that God never abandoned us.  I want to tell you the full story of those years, because I want you to witness, as we did, how God walked through them with us, showing an intimate concern for every detail of Priscilla’s care.  So please join me for the posts ahead.  I want you to see that God’s mercies to Priscilla didn’t end when she get an untreatable fatal disease.  God’s mercies are endless.

And speaking of concern for detail . . . our craftsmen ensured that the new floorboards (top of photo) lined up perfectly with the old ones (bottom).

AUDIO VERSION

 

In my first post I noted that before Priscilla came down with her illness, we’d been led “into a way of life that involved trusting God by faith to provide for our needs.”  It will be helpful to explain more about this here, before I tell the full story of how God cared for her during her illness, because this will account for many of the things you’ll be hearing about.

When a follower of Jesus feels called by God to pursue an enterprise for which they don’t personally have sufficient funds, the normative practice, to state it bluntly, is for them to ask for money.  More specifically, they will contact people they believe would be interested in their work and explain how it is strategic for advancing God’s kingdom; they will describe the financial and material needs it currently has; and they will invite people to become partners in their enterprise through prayer, encouragement, counsel, and particularly by giving towards those needs.

We see this approach modeled repeatedly in the Bible.  Moses calls publicly upon “everyone who is willing” to donate gems and precious metals, fabrics, oil and spices, and their own labor for the construction of the tabernacle.  David similarly asks “who is willing?” to give precious metals and gems for building the temple, after explaining that he has already donated his own “personal treasures” but that they are not sufficient.  And a large portion of Paul’s second letter to the Corinthians consists of him rather shamelessly asking them for money to help the poor.  But in the end he tells each of them to contribute “what you have decided in your heart to give, not reluctantly or under compulsion,” and he stresses the strategic value of this initiative: It will “not only supply the needs of the Lord’s people,” it will “also overflow in many expressions of thanks to God.”

So this is the norm.  But sometimes, under exceptional circumstances, God calls people who are in need of money for a kingdom initiative to take the first step in this process, but not the second, and the third only somewhat.  That is, they may still explain to interested friends what work they feel called to and outline its strategic importance.  But they will not describe its immediate practical needs, and while they will still invite others into partnership with their enterprise through prayer, etc., they will not ask them to contribute towards those needs.  Instead, they are to trust God to put it on the hearts of friends of the work to do this at just the right times.

Because this approach is so exceptional, it must be taken only for specific and suitable reasons.  For example, when Hudson Taylor went to work in inland China in the mid-19th century, he recognized that he would have to count on God to lead his supporters in England to send him money weeks or months in advance, even before he knew of needs himself, so that it would arrive in China by the time it was needed.  Francis and Edith Schaeffer took this approach in the l’Abri Fellowship because they believed it would help them demonstrate the reality of God to the young inquirers and atheists they wanted to reach.  And Amy Carmichael did it very often as a matter of guidance.  When the Dohnavur Fellowship was contemplating a new undertaking (such as building another nursery), its members would pray that if God was behind this initiative, He would put it on someone’s heart to give towards it without them asking—as happened repeatedly.

I’ll describe in my next post how God called Priscilla and me in 2008 to become volunteer campus staff members with Graduate InterVarsity Christian Fellowship (Grad IV) at Michigan State University.  But let me explain here why, I believe, we were also called to follow this exceptional approach to meeting the needs of that ministry.

At the time, we understood that we were to do this pretty much for the same reasons as the Schaeffers at l’Abri.  As God provided for us not through direct appeals but instead through trust and prayer, this would help believers, seekers, and skeptics among the students we were working with, who were looking on, to recognize God’s reality and activity in our world today.  Many students shared with us that this indeed happened for them.

But now that I look back in light of more recent experiences, I feel I can discern an additional purpose.  I believe that God also wanted us to follow this approach to funding our ministry with Grad IV so that we would already be doing it when Priscilla became ill and we could no longer be active in that ministry.  That way, as she continued to receive help in this same way, as her heavenly Father put it on the hearts of compassionate friends to provide it at just the right time, and as God orchestrated all the other aspects of her care with what I’ve called “an intimate concern for every detail,” this would illustrate to everyone looking on that a person who gets a terminal illness, even a protracted, severely disabling one like ALS, is never forsaken by God.

AUDIO VERSION

In my last post I explained why I believe God wanted Priscilla and me not to make direct appeals for support, but instead rely on Him to provide through prayer, when we were volunteer campus staff members with Graduate InterVarsity (Grad IV) at Michigan State.  But how were we led to follow that approach in the first place?

I was expecting to move into another full-time salaried position when I left my pastorate in East Lansing in 2008.  Over a period of many months I applied for a variety of teaching, chaplaincy, and pastoral opportunities all over the country.  But this widespread job search did not yield even a single interview!  At the same time, however, two other things were happening.

First, the dozen or so graduate students who’d been attending our church asked us to work more closely with them in Grad IV because their staff member had just left.  And so I helped lead the group’s Bible study that summer, and we worked closely with the student leaders to plan that fall’s New Student Outreach (NSO).  We realized that we wanted to keep working with this group for as long as we were in town, and that in that case we really should come under the authority of InterVarsity.  So we both applied to become volunteer campus staff members and were accepted.

Meanwhile, provision began to come in.  Part of it was through unsolicited gifts towards our living expenses, some from close friends and some from unexpected and even surprising sources.  Another part was through freelance work that I could do in time that wasn’t required for ministry responsibilities.  Some of this was a continuation of things I’d already been doing, such as consulting with the International Bible Society (now  Biblica).  But much of it was work that “found me,” rather than anything I went looking for.  (As I write this, I realize that it’s is a story of its own that needs to be told some day.  Stay tuned.)

Eventually it dawned on us that we likely weren’t going anywhere in the near future, but that this was all right, because we had a ministry that we really enjoyed, and the means to carry it on.  I remember telling God in prayer one day, “You’ve got yourself a deal.  As long as we’re able to keep doing this, we’ll keep doing it.”  My measurement of whether we were able to “keep doing this” was a bookkeeping account I initially named “Survival,” but later changed to the less dramatic “Living Expenses.”  So long as it remained in the black, I felt, we were good to carry on.  And it stayed in the black the entire time we were volunteer staff, at least on an “accounts receivable” basis:  On the few occasions when it dipped into the red, this was never by more than the amount I was owed for freelance work already done and payable.

I should specify that when it came to funding our ministry with Grad IV, we didn’t feel that God had forbidden us to ask directly for support.  Rather, as specific needs arose, time after time we felt a positive leading to pray and wait for God to provide for them in a way that would also serve the larger purpose I described last time.

I’ve reread all of our ministry newsletters and I’ve only found two places where it could be said that we did ask for support.  One place is in our very first newsletter, from October 2008, where, along with reports and photos of NSO and an explanation of our new status as volunteer campus staff members, this notice appears:

Audience wanted for news of God’s great works on campus
We believe that God is honored when His great works are made known, and so we’re looking for people to share the latest news with about what God is doing among the graduate students at Michigan State University. Please let us know if we can send you prayer requests and ministry updates. We’d be honored to have your partnership in our ministry in this way. Also, as volunteer staff we’re donating our time, but we can raise support for expenses such as travel, supplies, and conferences. We’re both hoping to attend InterVarsity’s Following Christ conference in Chicago at the end of this year. If you would like to support our work in this way, please let us know, and we’ll tell you how you can. Thanks very much!

So clearly we did not feel a positive leading not to ask for help with our ministry expenses.  In response to this one notice, a loyal band of friends committed themselves to giving towards those expenses each month and they were always covered, including things like the conference costs we mentioned.  But we did feel led not to say anything about living expenses, only that we were “donating our time.”  Nevertheless, these, too, were always covered, through generous and timely gifts, and work that “found me.”

Other than this, all five years of newsletters contain almost nothing on the subject of financial needs except grateful reports that we’d finished the calendar year or the school year “in the black” in terms of both ministry expenses and living expenses, and invitations for our friends to rejoice and thank God with us for this.  The one exception comes in August 2011. Priscilla’s desktop computer had stopped working and it would have cost almost as much to repair as to replace.  My laptop computer was ten years old at that point, and while it was still going strong (those iBook G3s lasted forever!), it could no longer keep up with the latest browsers and so I was unable to use essential student ministry tools such as Facebook and Google Docs effectively.

I suppose we could have waited to see if anyone asked us whether we needed new computers.  (Something like that had actually happened to us before.  A few days after we identified a chest freezer as something we needed to support Priscilla’s ministry of hospitality, someone asked us, “Do you know anyone who needs a freezer?”—and gave us hers!)  But we did not feel led to take that approach this time around.  Instead, in our August 2011 newsletter we mentioned the need for replacement desktop and laptop computers and asked whether anyone had ones a few years old they could give us.  Alternatively, we suggested, people might “contribute towards the purchase of new computers.”

But even though we made this direct request, God still provided for this need in a way that spoke of His reality and present activity.  We soon did receive one generous check from friends of our ministry in response to this appeal.  But the next day we received another check that had been written before we made the appeal!  Three days later a local friend brought her brother, who was visiting from out of town, over to meet us.  After a great visit they said their goodbyes and left.  A few moments later the doorbell rang.  It was the brother.  The look on his face said, “You’re probably going to find this strange, and as a matter of fact, I’m finding it a bit strange myself.”  But he had returned because as soon as he’d gotten into the car, he’d felt God leading him to make a gift to our ministry.  He didn’t know about our need for computers.  But he nevertheless gave us a contribution that made the total in our computer fund sufficient for us to purchase a desktop computer, particularly when we followed our InterVarsity supervisor’s advice and got a refurbished one online at the Apple Store.

Later a friend who served with a Christian ministry was given a computer upgrade at work and he was allowed to donate his previous laptop to us, because we too were in ministry.

The first two stories in our inaugural Grad IV ministry newsletter

AUDIO VERSION

 

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.

AUDIO VERSION

 

“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.

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

AUDIO VERSION

“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, as a for-profit publishing house, needed to wait to see a certain level of sales before commissioning further guides.  In other words, the income I’d been counting on for the next two years had just evaporated.

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.

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.

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.”

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.