“I promise I’ll bring it right back”

AUDIO VERSION

 

Shortly after we returned from New York City, I got a notice from the Michigan Secretary of State’s office that I needed to renew my driver’s license. “That’s funny,” I said to myself. “Why didn’t we get a notice for Priscilla’s license earlier in the year?” I looked into this a bit and discovered that they hadn’t sent her a renewal because she had a permanent handicapped placard.  As a result, she’d done half the driving to New York and much of the way back with an expired license. Oops.

In order to renew her license, Priscilla would need to show that she didn’t have a condition that would make it unsafe for her to drive. At this point that would mean learning hand controls. This would require a doctor’s prescription, special driver’s education, and either the modification of our car or the purchase of an already-equipped one. All of this, people who’d done it themselves were saying online, would cost hundreds if not thousands of dollars, and take at least a year’s time. By then, we were pretty sure, Priscilla wouldn’t be able to drive with her hands, either. We concluded, reluctantly, that the disease might have just taken something away, despite our best efforts not to give anything away.

A few days later, as Priscilla was lifting a large skillet off the stove to put the leftovers in the refrigerator, her legs collapsed under her from the weight. Her shrieks brought me running from the other end of the house. I was able to lift her into the regular wheelchair we’d gotten a few weeks before and use it to get her into bed to recuperate. But she kept asking me, with great animation, “Why did you put the skillet back on the stove?” I explained that I had to get its weight off her, and I couldn’t have opened the fridge to put it in there because she was on the floor in front of the door. But she was still upset, and we finally figured out why. The short distance she had been able to move the skillet towards the fridge represented an achievement, but I’d undone it by moving the skillet backwards. Disempowerment comes in many forms.

That weekend we attended an art show where a new friend was displaying her watercolors. It unexpectedly began to rain. The paintings were under a canvas awning that had sides, but even so the wind was gusting, the sides were flapping, and rain was getting in. You definitely don’t want rain on your watercolors. They become abstract art in a hurry. A couple of family members were also present and we all rushed to protect the paintings.  Priscilla, a watercolorist herself, joined her friend in directing us how best to put them away safely. In the end none of the artwork suffered any damage. “It’s a good thing you were all here,” the artist told us.  “Maybe I can still do something,” Priscilla said to me afterwards.

Though she could no longer drive a car, there were other vehicles she  could drive. Earlier she’d been using shopping carts as a sort of walker when we went to the grocery store, but lately this had become too tiring, so she’d moved into electric “mart carts.” She was actually pretty experienced with these already. About a dozen years before she’d needed to use them while recovering from a badly broken leg and ankle that she suffered in a car accident. It dawned on me that the accident had been a sort of “dress rehearsal” for some of the other challenges we were presently facing as well, including sorting out vast and complex medical bills. (The only difference was that after the accident, Priscilla got better and better, while now she was getting worse and worse. But we were still grateful for any experiences that made us better equipped.)

About a week after the watercolor episode, we went shopping at a discount store. Priscilla gratefully used one of their mart carts to get from department to department. She wanted to visit the beauty store next door, but knew they weren’t set up with carts. Not a problem. “I promise I’ll bring it right back” she called out as she drove her cart right out the door of the first store (as she would have done anyway to get to our car in the parking lot), turned left down the sidewalk to the next store, and drove in their door as I held it open for her. I had to slide some tables and displays out of the way so she could negotiate the narrow aisles, but she found what she was looking for and drove with satisfaction up to the cash register, to the astonishment and admiration of the sales clerks.

Empowerment comes in many forms, too.

Priscilla did this watercolor sketch that summer in a painting group organized by her artist friend.
Priscilla did this watercolor sketch in a painting group organized by her new artist friend.

Exercising

AUDIO VERSION

 

“After dinner we walked our neighborhood route. Priscilla made it one quarter of the way around on her own and then needed to lean heavily on my arm the rest of the way, stopping often and struggling mightily. Quite a change in only a few months.”
– From my journal, August 2012

Priscilla and I had always enjoyed exercising together, particularly walking, biking, and swimming. We were still taking 10- to 12-mile bicycle rides as far into her disease progression as April 2012. (We did one of the rides that month with a student half our age, who invited Priscilla to set the pace, and then said at the end she’d found it a bit fast!)

But walking was by far our favorite shared exercise, because it gave us a chance to talk out how everything was going in life as we “got away from it all” for a little while. I shared in an earlier post how Priscilla’s symptoms first became perceptible on a walk, and how the increasing difficulty of getting around our 2½-mile neighborhood route provided an indicator of their progression.

The walk described in the quote above was the last one we took all the way around that route. The next thing we tried was doing half of it earlier in the day, and the other half later in the day. Unfortunately this was still too difficult.

Then Priscilla had an idea. She still had the aluminum walker she’d needed to use after the car accident we’d been in some years before. Now she thought of getting snap-on wheeled attachments for the bottom of its legs, to replace the simple rubber pads that were there. (It was only months later that her friend at the medical lending closet gave her the deluxe walker.) The streets and sidewalks wouldn’t be smooth enough, or clean enough of debris, for the small wheels such attachments had. But there was a newly paved off-road fitness trail just a mile from our house. Priscilla believed the customized walker would do just fine there, giving her good support so she could continue walking.

So we visited some medical supply stores and Priscilla found just what she was looking for. The front wheels even swiveled for easier steering. While she test-drove the new equipment around the store, I started joking with the clerk. “What did I do this weekend? Oh, my vehicle was in the shop.” “Tire rotation,” he quipped in response.

The wheeled walker worked perfectly. We’d drive over to the trail, park by an entrance, and head out into nature. At first Priscilla could go nearly the distance of our old neighborhood route. It was bittersweet to see this distance shorten a little bit each time as we continued to enjoy our walks together, now in even more scenic surroundings. But as late as Thanksgiving we were still using the trail, thanks to unseasonably warm fall weather.

The Inter-Urban Pathway that we walked on with the customized walker.

However, over the winter her symptoms progressed further, to the point where even a short walk on a smooth, paved trail had become too much once spring returned. We also had to give up biking because of energy and balance issues. Nevertheless, Priscilla could still swim beautifully. We’d joined a local fitness center a year and a half before, and swimming had initially strengthened her muscles enough to offset some of the weakness the disease was causing. Now this became her main exercise. Though it was increasingly time-consuming, eventually taking over three hours per session, we made every effort to go swimming at least twice a week.

It was fascinating to watch her get into the pool. She would use the walker to get to the ladder at the deep end, balance precariously between its upper railings, lean forward until she started falling, and in midair suddenly achieve perfect diving form (because her muscles were no longer bearing weight) and slip gracefully underwater.

Swimming gave Priscilla more than another year of very beneficial exercise after she had to stop taking walks, even as the progression of the disease forced her to take new approaches to keep going. After one swim in January 2013 she looked over to me from her lane and said, “I’m afraid I’m not going to be able to climb out by the ladder any more.” So we swam together down to the shallow end and took the stairs, with her clutching the railing all the way up. But we’d learned not to think of things like this as “milestones in deterioration.” Rather, we decided, the stairs were our friends. They were helping us to keep doing what we wanted to do.

In mid-August 2013 Priscilla asked me to bring her in to the pool in the transport wheelchair. Previously she’d been walking from the parking lot to the pool with her walker, but lately this had been using up all her energy before she even got to swimming. So instead of going separately into the men’s and women’s locker rooms, we started sharing a handicapped bathroom for changing and showering.

Only a couple of weeks later she found that climbing the stairs out of the pool had become too much for her. But it was equipped with a lift chair (which worked by hydraulics, of course), and the lifeguards very kindly lowered it into the pool for her upon request and raised her out once she was buckled in. I would bring over the transport wheelchair from the ladder at the other end of the pool. Priscilla never needed the hydraulic chair to get into the pool—right to the end she did that graceful dive.

The next month, because we felt that we still had a lot of swimming ahead of us, we both bought new goggles, and Priscilla got a bathing suit that came in two pieces but looked just like a one-piece suit for swimming laps once it was on. Changing had become quite a struggle and this made things easier.

One day shortly after this, Priscilla swam her usual mile, even though she could barely use her legs, and then asked the lifeguard, “Would you please lower the lift chair into the pool for me?” “Why?” she responded. She’d come on shift after we started, and she hadn’t noticed any difference between Priscilla and the other swimmers.

Creating a Barrier-Free Bathroom, Part 1

AUDIO VERSION

 

Avoiding falls was something we were warned about by health professionals early and often in the course of Priscilla’s illness. We were cautioned that while she could live for quite a while with a reasonably good quality of life even with a degenerative neurological disease (whichever one she might have), a fall could dramatically and permanently impair her quality of life all at once.  And the single most dangerous place for falls, by far, was the bathroom.

The kind of suction-cup grab bar we used for shower safety at home and away.
The kind of suction-cup grab bar we used for shower safety at home and away.

Early in 2013, when Priscilla was still using a cane, we installed a hand-held spray head so she could maintain her balance better while showering. Shortly afterwards we attached metal grab bars to the bathroom wall for safety getting in and out of the tub. Then we added the tub-side and suction-to-the-wall handles that we got from the medical lending closet (and brought along on our New York trip).

Even with all this safety equipment, that spring she nearly collapsed in the shower and I had to catch her and help her get out.  “I wish God would just take me home all at once!” she lamented—as opposed to one muscle group at a time, as seemed to be happening.

After this incident I helped her in and out every time, and we also got a stool that fit in the tub so she could sit down if her legs felt shaky. (I recorded in my journal that once we got it in place, I lay down in bed with my head spinning with relief!) But one thing was certain: She had to stop climbing over the edge of that tub, with or without my help, or it was only a question of time before she had a serious fall. We needed to make the master bathroom barrier-free as soon as possible, or maybe she would go home all at once.

The floor renovation and trip to New York pushed this project into mid-summer 2013, but at that point we began pursuing it seriously. We asked the advice of a man we knew who did construction. “That’ll involve a lot of different trades,” he said. “Plumbing, tiling, construction, maybe electric. You’d better get a general contractor.” Well, we didn’t know any of those. But we did know a plumber, and we decided to start with him.

We’d met him in an unusual way. Over a year before, we’d taken on the project of repairing a drip in the shower head in our guest bathroom. This had required turning off the house’s main water valve. When we went to turn it back on again, it was jammed stuck. That was the valve on our side of the meter. We then noticed that the valve on the city’s side of the meter was spinning freely—broken in the opposite way! We started calling plumbers from the Yellow Pages and they all gave us the same story: The city would need to come and turn the water off from the street, since “their” valve was stuck open, before any repair of “our” valve, stuck shut, could be attempted.

This was on a Saturday.  But we were able to reach the on-call person at the city’s public works department. “That’s going to be very expensive,” he told us. “You’d have to pay a crew overtime to come out on a weekend.” So we decided to wait it out until Monday. It was spring and a good supply of relatively clean water was coming in at the sump pump, and we could use that to flush the toilets.

But we still needed drinking water. So we brought two empty clear-plastic one-gallon water bottles with us to fill at church the next morning. (Priscilla had saved these, “just in case”!) I was speaking with the pastor after the service when she came walking up, holding the bottles by their handles, one in each hand, having just filled them in the ladies’ room. “What are those for?” he asked. “Is the water that much better here than at your house?” We explained our situation and he said, “There’s a plumber who comes here.” (This was our former church, which thousands attended, so naturally we didn’t know everybody and we hadn’t met this man ourselves.) “I’ll bet he could even help you today, so you don’t have to keep going without water.”

Well, the plumber very graciously did come by that same evening, and he did his best to help us, but in the end we still had to wait for the city crew the next day. When they came and turned off the water, they were very apologetic. “There would have been no charge, even on a weekend,” they insisted. “We feel so badly you were misinformed and had to go without water those extra two days.” The plumber came right after them, fixed the valves, and had our water back within an hour.  We checked the guest bathroom shower head and confirmed that it no longer dripped.

The circumstances had been strange and inconvenient, but under any other ones, we wouldn’t have met this plumber. We’d really hit it off with him, and now, over a year later, he was the first person we wanted to talk to about a bathroom renovation.

To be continued.

Creating a Barrier-Free Bathroom, Part 2

AUDIO VERSION

 

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

We called our plumber friend and described the bathroom renovation we hoped he could help us with. We told him we knew it would involve multiple trades and asked whether he knew a good tiler. “My brother has a tiling business,” he replied.

A few days later the two of them came to look over the project. It would require reinforcing the floor joists to support the added weight of the tiles, but they could handle that with a couple of helpers. They wouldn’t need to change any of the existing electrical wiring. And so they felt they could do the project together, without any need for a general contractor. We asked them to give us an estimate.

One morning a week later they sent us the estimate: approximately $9,000. We couldn’t put a price on safety, so we gave them the go-ahead. We did already have about half that amount, left over from the two generous gifts we’d received right at the beginning and end of the floor renovation.  That project had evidenced the loving kindness and care of Priscilla’s Heavenly Father in so many ways that we felt assured He would help us with this next necessary renovation as well.

That same afternoon, we unexpectedly received two other gifts.  One was for $500 and the other for $1,000. Before the renovation could begin, we were given five further gifts that totaled over $1,000. So we were closing in on having what we needed.  None of these donors had known that we were just about to renovate the bathroom.

Priscilla played a very active role in planning the project. You might say she was an additional tradesperson, the interior designer. She went  online and picked out all the fixtures (mounted and hand-held shower heads, handles, etc.). The plumber ordered samples and brought them by for approval. They looked great.

Next we went to a home supply store to look for tiles. Priscilla found some beautiful 18”-square Italian porcelain tiles, at a discounted price, and we brought back a sample to show the tiler. He brought us some samples of his own to compare, wanting to give us the option of a tradeoff: perhaps something slightly plainer in appearance, in order to save some money. But when he discovered that he couldn’t beat the price of the Italian ones even by ordering wholesale, he said by all means let’s go with those.

Most “barrier-free” bathroom designs still include a low “curb” at the edge of the shower space, to keep the water from running out into the rest of the room. But the whole point of the renovation was to save Priscilla from having to step over anything, no matter how low, and eventually to allow a wheelchair to move in and out freely. So she had the idea of sloping the shower floor gently away from the rest of the room, towards a long drain by the wall, with no curb. The tiler thought this over and said, “We can do that.” They’d make the floor slope down one inch as it passed over a width of three feet, and that would be sufficient.

The night before the work began, Priscilla drew up a layout for the tiles. The tiler made some helpful improvements the next morning (displaying the wisdom of experience), but one thing he didn’t change was her idea to put a seam right in the center of the doorway. This provided an invaluable navigational aid for her, and for me, as we later steered manual and electric wheelchairs and a shower chair through that narrow opening.

The crew finished the work in just over a week, pulling out the old fiberglass shower-tub unit; reinforcing the floor; putting up sheet rock; and cutting and laying the floor and wall tiles. The tiler turned out to be quite an artist, arranging the wall tiles with an eye for the pattern in the porcelain so that the final effect was a design that “flowed” down the wall like water.

Now we had a barrier-free bathroom where Priscilla would be safe. It was also a beautiful and elegant space.  By her design, there was an easily accessed L-shaped bench at one end of the shower that she could use for as long as she was able to sit on her own.  After that, the bench would tilt up against the wall to make room for a shower chair.

A few weeks after the renovations were completed, we got a call from some longtime supporters who had a very specific question for us: “Do you need any more money to finish paying off your bathroom renovation, and if so, how much?” (They’d heard about the project.)  Since we’d “closed the books” by then, I knew the number to the penny: $2,128.06. These friends graciously sent us a gift for that amount.

The one thing Priscilla hadn’t been able to find anywhere was just the right soap tray. Eventually she designed one of her own that would extend out from both sides of the vertical bar that held the mount for the hand-held shower head. This would put the soap within easy reach right in the center of the shower space. She sent the design to the brother who was a woodworker and he fabricated it for her as a Christmas present, from a smoky-gray plastic that coordinated nicely with the silver-toned fixtures.

Oh yes, I need to tell you exactly when we met the plumber who turned out to be the key to this renovation. It was the same week in May 2012 when Priscilla tried to run, and couldn’t, and we knew that “something was definitely wrong,” and the same week when we were first introduced to Amy Carmichael.  God knew what kind of help we would need as Priscilla’s symptoms progressed, and He began putting the pieces in place right from the start.

The remodeled bathroom, with tilt bench, long floor drain, and hand-held shower head. And a little cubby hole for shampoos, a nice touch added by the tilers.
The remodeled bathroom, with tilt bench, long floor drain, and hand-held shower head. And a little cubbyhole for shampoos, a nice touch added by the tilers.

A postscript to the story:  On the day I wrote this post, the same plumber happened to be here again helping with another problem.  The hose that carried water out from our sump pump had sprung a leak, somewhere after it left the house.  This hose was buried underground and the simplest solution, since it was already old and worn, was to not to dig it up looking for the leak, but to send the water out by a different route through more reliable piping.  While the plumber was working on this project, he discovered that the old outflow piping inside the house was about to come apart.  This would have flooded the basement.  He discovered it just in time because of the leak in the hose outside the house.

Into a Wheelchair

AUDIO VERSION

 

One morning in August 2013, during the days leading up to the bathroom renovation, I heard an unaccustomed sound. I’d gotten going on the day ahead of Priscilla, as I often did, starting some freelance work to give her the chance to get ready at her own pace. My signal to meet her for a late breakfast was the sound of her walker as she came out of the bedroom and headed for the kitchen. But this morning, instead of small squeaky wheels, I heard the smooth gliding of larger ones. And there was Priscilla, seated in the wheelchair we’d gotten months before for “when it was needed,” propelling herself along. “I just couldn’t face dragging myself out behind the walker,” she explained. She had a serene smile on her face.

“This would be a nice morning for breakfast out on the deck,” I told her, wanting to be encouraging.  “It’s not so humid today.” I pushed her in the wheelchair over to the sliding door that led out from our dining room and backed her gently over the small step down onto the deck. Following the way of thinking that was proving so helpful to us, we agreed that the wheelchair was our friend, enabling us to keep doing what we wanted to do. Because it really was a nice morning for breakfast out on the deck.

From that day on, Priscilla used the wheelchair to get from place to place if she were going more than a few feet. She could still get up to sit on a couch or in a regular chair for visiting and meals, and she still used the walker to go short distances, such as from the kitchen door to the car in the garage. But the wheelchair became our “new normal” for everything else. I slid our bedroom furniture towards the far wall to give her more room to maneuver in there. Her decorator’s sense knew that it was now off center, but she agreed not to let this keep her up at night.

We hadn’t been able to attend the Grad IV Bible study that summer because of accessibility issues (it was held in a house with steep front steps that had widely separated railings), so we’d been meeting weekly with some friends from church instead. Previously Priscilla had used her walker to get from our car into the home where we met. But this time I used a wheelchair to bring her in. She quickly transferred herself into a living room chair, but even so, as I recorded in my journal, “Everyone was sad and abashed, and stood around uncomfortably.” But Priscilla put everyone at ease by saying cheerfully, “Why don’t you all have a seat, too?”

That Sunday she wanted to use her walker to get into church, but we had to make a quick switch to the wheelchair when that proved too much. “More sad faces,” I noted in my journal. But Priscilla was undeterred. She spotted a new student attending that morning and got him to join us for lunch afterwards, along with three other students. No matter that she now had to go into the restaurant in a wheelchair. She just told the hostess that we’d like “a table for six, not a booth,” and that we wouldn’t need one of the chairs.

But something still wasn’t quite right.  Eventually I recognized that I was feeling depressed. As I put it in my journal, “Priscilla moving into a wheelchair had hit me hard, and we hadn’t talked it out.” So we did talk it out, and we cried together. I realized then that I needed to walk a fine line between bravely carrying on without talking about the emotions (this allowed them to sink down into depression) or paying so much attention to the sadness that it would overshadow the time and opportunities we still had together. Yes, we needed to talk, but after that we did need to carry on bravely.

Armed with this insight, I immediately felt energetic and ambitious enough to agree that we should attend Priscilla’s uncle’s funeral that week, a few hours’ drive away in a neighboring state. She’d wanted to pay tribute to his life in person and also renew friendships with her cousins, but I hadn’t seen how it would be possible to go to the church service, the cemetery, and the reception if she were wheelchair bound. The answer was that we just needed to go do it. So we did it, with lots of assistance and support from her extended family.

Shortly after we returned, an international graduate student asked Priscilla’s advice about buying a used car. This was something we’d helped several other students with over the years. She went online and found a car for sale that she knew would be dependable. “I know it’s beyond your budget,” she told the student, “but this is the kind of car you should be looking for.” He very enterprisingly called the dealer and said what his budget was, and the dealer agreed to bring the price down significantly so that it was within that budget. The next Saturday we took him out to the dealership, went for a test drive, finalized the paperwork, and arranged the financing.

Priscilla transferred between the cars, and went in and out of the dealership and bank, in her wheelchair.  It came along for the test drive in the trunk.

Priscilla with the student and his car.
Priscilla with the student and his car.

An October Wedding, Part 1

AUDIO VERSION

 

Sarah, the daughter of some lifelong friends of ours, was getting married in Ontario in early October 2013. Six months before, she’d asked Priscilla to do her wedding bouquets. They’d emailed back and forth to settle on flowers, colors, and designs. Priscilla hadn’t known then how dependent she’d be on a wheelchair by the fall, but I suspect she would have agreed to do the bouquets just as eagerly even if she had known. Our friends generously invited us to stay in their home for the wedding weekend, and that made things much easier.

Sarah found just the dishes she wanted for her trousseau, at a great price—in the United States. She asked if we’d bring them across the border and we said sure, have them sent to us.

We left on a Thursday to give ourselves time to settle in and get organized before the Saturday wedding. When I packed our car, I spread the boxes of dishes out across the floor of the trunk. I put the transport wheelchair behind the driver’s seat and the aluminum walker, for short indoor trips, behind the passenger’s seat. The only way to fit in Priscilla’s regular wheelchair was to disassemble it and lay the pieces on top of the boxes in the trunk. I piled most everything else we brought onto the back seat. There was just enough space left that we could still see out the rear window.

When we got to the border, we duly presented the letter Sarah had given us authorizing us to pay the duty and bring the dishes to her. The customs agent examined the details, noted the manufacturer, and exclaimed, “Those are my favorite dishes, too! And she got such a good deal.” Then she waved us on without charging any duty. An early wedding present from the Government of Canada.

When we arrived at our friends’ house we found eight other family members already visiting with them. These included two athletic young men, Sarah’s brother and her cousin’s husband. I asked them to help me get Priscilla up the steep, narrow stairs from the front door to the main floor in her wheelchair. The best approach seemed to be to back her right up to the steps, tilt her backwards 45º, and then for the three of us to lift her practically off the ground, so that the wheels just grazed the steps going up. Priscilla had babysat the brother as a child and I told him, “She carried you around when you were younger, now’s your chance to carry her.”

When Priscilla landed at the top of the steps she spun the wheelchair around, spotted Sarah, and exclaimed joyfully, “You’re getting married!” This, a relative later observed, took all the focus off Priscilla being in a wheelchair and “made it all about Sarah” from the time we arrived. He said he really appreciated that.  We greeted one another warmly, but further celebrations would have to wait. Most of us were tired from traveling that day, so we didn’t visit long before we settled down for the night, some in nearby lodgings and the rest in various corners of the house.

Our friends were hosting a catered rehearsal dinner for 40 the next evening. Under any other circumstances Priscilla would have spent the entire day helping to set up and decorate for A PARTY! But she seemed able to accept that her role was different now. I sat with her on a couch by the front window, staying out of the way while others moved furniture and put out chairs.  We conversed with an ever-shifting assortment of family members about their life stories and in many cases their faith as well.

The guests started to arrive around 4:00 and the house was packed by the time the caterer brought the food at 5:00. Everyone wandered in and out of the kitchen, filling and refilling plates and conversing with fellow guests, changing seats with every trip. After the meal most of the group went over to the wedding venue for the rehearsal. Sarah, her attendants, and her mother would stay there overnight, to make getting ready for the wedding easier the next day. The few of us who remained at the house cleaned things up and then settled in for a bit more conversation before making it a relatively early evening, in light of the full day we knew was coming.

Priscilla had to make six bouquets the next morning in time for them to be delivered to the venue for pre-wedding pictures, so we set the alarm for 7:00 and got right to work. The first task was to find the flowers. I was told they’d been put in the “cold room.” Wherever that was. Fortunately Sarah’s father was already up and he guided me through the downstairs office, stepping in the dim light over a bridal attendant’s husband sleeping soundly on the floor, to a nondescript door at the far corner. The cold room. We pulled the flowers out as quietly as possible.

Priscilla set up at the dining room table in her wheelchair and worked away steadily, improvising creative approaches to make striking bouquets out of a combination of flowers that included some she’d never used before. “She’s very talented,” remarked Sarah’s grandmother. If only she knew. Priscilla had been praying in the weeks leading up to the wedding, “Lord, please let me still be able to use my hands in October, so I can do Sarah’s flowers.”

By 10:30 Priscilla was able to turn the finished bouquets over to Sarah’s father, who rushed them down to the venue in time for the photographs. We’d met our first major challenge for the day. Now we needed to meet the second. We had to get to the wedding.

To be continued.

Priscilla makes the bridal bouquets.
Priscilla puts together the bridal bouquets.

An October Wedding, Part 2

AUDIO VERSION

 

This post continues the story begun in my previous post.

To start getting ready for Sarah’s wedding, Priscilla had to take a shower in an unfamiliar bathroom. The tub was narrow and sloping, with high sides to climb over. But thanks to the stool and extra handles we’d brought along, she was able to shower safely. Even so, getting dressed for the wedding was so complicated and time-consuming that the two wedding-party spouses who’d agreed to stay behind to help her down the stairs knocked anxiously on our door to make sure we knew what time it was. We did. That wasn’t the problem.

When we finally emerged they took her right downstairs and immediately sped off to the venue. We followed at a slower pace, bringing Sarah’s grandparents with us.  About ten minutes from home, we realized that in the rush to get going, we’d left the garage door open. (We’d been given custody of the remote as the last to leave.) If we returned to close it, we’d miss much of the wedding, late as we were already.

The four of us deliberated and Priscilla finally declared, “God has everything under control.” We resolved to go and enjoy the wedding, trusting that the house would be safe for a short while. Sarah’s uncle was to return there between the ceremony and reception to get the cake, since the venue, hosting multiple weddings that day, couldn’t accommodate it before then. We’d give him the remote and he could close the garage door.

When we arrived at the venue, we were welcomed by none other than the two who had helped Priscilla down the stairs. No wonder they’d been in such a hurry to leave—they were the greeters! The wedding coordinator took Priscilla away in her wheelchair while I parked the car. I followed signs to the “Wedding Garden” and reunited with her. The seating area looked full and we took places at the back. But Sarah’s brother, in groomsman attire, came up and told us that the family row on the bride’s side still had room; would we like to sit with the parents and grandparents? We’d be delighted. In keeping with proper wedding etiquette, I let him escort Priscilla while I walked respectfully behind. In this case, he pushed her in her wheelchair. Hmmm, she used to push him in a stroller, and now . . .

Priscilla wore a long dark-red satin skirt with matching wide scarf. She’d forgotten she had these and only rediscovered them the night before we left. It turned out that the mothers of the bride and groom had consulted and agreed to wear “long” themselves, so she fit right in. “You look great!” a guest on her way to the next wedding exclaimed when she passed Priscilla in the hotel hallway. What to wear to a wedding in a wheelchair had been the subject of much anguished deliberation for her, but the last-minute discovery had solved the problem.

Priscilla with Sarah and Bryan

The ceremony itself was beautiful. Bryan and Sarah’s deep faith shone through all the details. We were so grateful we’d been able to attend. Afterwards the newly married couple led everyone out into the garden to visit. But within only a few minutes, we started feeling raindrops. Knowing we couldn’t wait until it really started to rain, I hustled Priscilla along the winding paths back to the hotel. The next wedding had been scheduled in the garden a hour after Sarah’s, but it had to be moved indoors because it was raining steadily by then.

The uncle who’d gone back for the cake told us at the reception that if we hadn’t left the garage door open, he wouldn’t have been able to get into the house, because no one had given him a key.  Apparently everyone who did have a key thought someone else was going to give him one, and when no one did, he thought he wouldn’t need one.

We had a wonderful time visiting with family members, and with friends old and new, at the reception. The speeches and presentations that followed the meal were very meaningful, but they went an hour longer than planned, so that it was 10:00 by the time Bryan and Sarah arose for their first dance. Given our new reality, this unfortunately had to be our cue to leave. Sarah’s grandparents were also ready to go by then, so we took them home with us.

But how would Priscilla get back up the stairs? The father of the bride kindly offered to come help, but the round trip to the house would take an hour or more, and we couldn’t take him away from his daughter’s wedding reception for that long. So we insisted we could manage. The plan we adopted was for Priscilla to hold onto each of the railings (mercifully the stairs were narrow enough for her to grab both at once) and for me to pick up her feet one after another, from behind, and move them up the steps while she shifted her weight forward to adjust.

This almost worked. The problem was, we ran out of railing two steps short of the top. While we were debating what to do next, Priscilla’s legs collapsed beneath her and she came down heavily on the main floor, on the edge of the stairs. But Sarah’s grandmother was a nurse, and she’d been trained how to lift fallen patients off the floor. She and her husband had already gone up the stairs ahead of us with Priscilla’s wheelchair. So we were able to lift her up by holding her under the arms and place her in the chair.

It was after midnight by the time we finally got to sleep, but we whispered to each other as the lights were going out, “We did it!” We’d been able to come to Ontario for Sarah’s wedding, and Priscilla had made her bouquets.

Getting in and out of the house

AUDIO VERSION

 

Our experience getting Priscilla up the stairs of our friends’ home after their daughter’s wedding illustrates what a challenge getting in and out of a house was becoming for us. This applied to our own house as well, even though there were only two steps at the door we used almost all the time, the one leading into our kitchen from the garage.

I mentioned in an earlier post how Priscilla got the idea of attaching handles to the outside of that door so that she could pull herself in. Unfortunately, within six months (that is, by March 2013) she’d lost so much upper body strength that she was no longer able to do this. I started coming into the house ahead of her, turning around, holding both of her hands securely, and pulling her in.

A month later, a frightening incident occurred that showed us that I needed to go out of the house ahead of her as well. We were getting ready to go to church on a Sunday morning. I heard her scream from the kitchen, first in terror and then in pain, and I came running. She’d planned to go out to the car before me but had met with disaster on the way. Her symptoms had just progressed to the point where her thigh muscles no longer had the extra strength they needed to lower her body down the steps. She’d collapsed at the top of the stairs and was lying in the doorway with her legs bent and pinned painfully beneath her.

There was no way to extricate her from that location. But mercifully there was a small area rug in the kitchen by the doorway and her upper body had landed on it. Somehow I realized that I should pull the rug back away from the door. When I did, her legs straightened and came out from under her. Even so, she was banged up too badly for us to make it to church. She spent the day resting in bed. After that I went down the steps ahead of her and she held onto my shoulders for safety and stability.

We realized that three low steps would be much better than one regular step and one high step to come in or out the door. We also realized that having railings would be much better than not having them! We asked our pastor whether he knew anyone who might make such a set of stairs for us, and he referred us to a man who’d done some construction projects for the church. This man very kindly came over one Saturday morning and built the steps out of wood, and he wouldn’t accept any payment for his work.

When Priscilla’s brothers came a few weeks later, in June 2013, to help with the floor renovation, they added another set of narrower railings inside the ones he had installed. Priscilla wouldn’t have to reach so far for these new railings, allowing her arm muscles to support her better, and she could also grasp them more tightly. This was one of many “quality of life” projects her brothers managed to fit in, even while they were putting down flooring every day.

By late September, Priscilla was no longer able to lift her own feet high enough to climb even these low stairs. I started lifting her feet up from behind and placing them on the steps. (That’s where we’d gotten the idea to do this at our friends’ place after the wedding. Our railings reached well beyond the top step, and that made the approach practical for our house.) But we knew this was dangerous—the collapse on the wedding trip confirmed this—and that it could only be a stopgap measure. What we really needed, as Priscilla had foreseen nearly a year before, was a wheelchair lift or ramp.

We started looking into possibilities online. We discovered an amazing product called FlexStep from Liftup, a company in Denmark. It was a staircase that could flatten down and convert into a lift. It would have been perfect for our needs, but unfortunately it wasn’t available for sale or distribution in the United States. (Anybody out there want to take this and run with it?)  We didn’t have room in the garage for a more conventional lift, and we didn’t want to put one at any of the outside entrances, either, because then Priscilla would have to travel from there to the car in her wheelchair outdoors, potentially in rain, snow, or ice. So we started looking into ramps.

Once again there was not room for a built-in ramp, because it would have to go around the sides of the garage to allow us to continue to park our car in there, and the required rise-to-run (height to length) ratio, with landings for turning corners, would put the end of the ramp out the garage door. But we did find a portable multifold ramp, made of heavy-duty aluminum, that we could run straight out from the door.

A multifold ramp like this one provided access from our garage into our house.
A multifold ramp like this one provided access from our garage into our house.

I’d already measured the garage for our investigation of built-in ramps, and now I created a scale model of the floor space on the computer and added proportionately sized rectangles for our car and the ramp. (I gave the car rectangle rounded corners.) We slid these around in the on-screen garage in every possible configuration and confirmed that (1) the car would still fit when we folded up the ramp if we slid its far end away about 30º, which we could do if we temporarily pulled out one of the two metal pegs that held it in place at the top step; and (2) nothing else would work. So a ramp it would be.

We would need one twelve feet long.  That was the longest size available, and it cost over $800. But if we wanted Priscilla to be able to get in and out of the house, we had to have it. So after giving ourselves one night to “sleep on it,” we ordered the ramp. This was on a Tuesday.

We’d been swimming on Tuesdays and Fridays. That afternoon, as Priscilla stood at the top of the garage stairs, her legs felt so weak she didn’t dare attempt going down them, even holding onto my shoulders in front of her. So we took that day off from swimming.

On Friday she felt the same way. “I’m afraid we’re not going swimming today, either,” she said. “Not unless there’s a ramp at the front door.” “I’ll go check,” I said, meaning this as a joke to help lighten the disappointment. We’d only ordered it three days before.  And if a 75-pound metal ramp folded up in a 6-foot-long box had been delivered to our door, we’d certainly have heard or seen something.  But just to carry out the joke, I went out of the garage and around the corner to the front door, and there it was! We couldn’t believe it had arrived so quickly and quietly. But we were back in business. We went for a swim.

Three days later we unexpectedly received a very generous gift that more than paid for the ramp.  The donor didn’t know that we’d just bought one.

Once again, at the very time when we crossed a threshold into what could be considered a new level of disability, God demonstrated His love and presence in our lives, to show us that He was going with us as we moved into this new territory.

After trying the ramp out for about a week, unfolding it to bring Priscilla in and out of the house in her wheelchair, then folding it up again and sliding the end to one side so we could park the car in the garage, we agreed it was working fine and that we should keep it. So we made holes in the top step to accommodate the pegs that would keep it from slipping out of place. Though her hands shook with weakness, Priscilla operated the drill, and the holes she made came out perfectly straight.

Losses

AUDIO VERSION

 

Later on the same day in early November 2013 when she drilled the holes for the ramp, Priscilla gave me a haircut.  She’d been cutting my hair for thirty-three years, from the time we’d started dating.  She sat in her wheelchair and I sat on a low stool in front of her.  But her hands shook so badly now that she realized this would have to be the last haircut she ever gave me.  She cried all the way through it.  I encouraged her as best I could, but this was a loss we both felt deeply, because, as she explained, cutting my hair was a way that she showed her love by taking care of me.

She’d been right to pray that she would still be able to use her hands to make Sarah’s bouquets.  This was only a month later, and at this point her hands wouldn’t have had the strength or coordination to make them.

Four days later we went swimming.  For the first time in our entire acquaintance (we’d met as lifeguards at a summer camp when I was a teenager), I swam more laps than she did.  Exactly one more.  I said nothing about it, but Priscilla knew the count and was discouraged.  We could see this as a negative milestone, I admitted, or we could be grateful that she was still able to swim, and al-most a mile at that.

I had recently taken on the role of pouring the coffee or tea at breakfast—previously always Priscilla’s prerogative as the hostess, even when it was just the two of us—because lifting the carafe or pot had become too much for her.  Now she asked me to fill her mug less full so that it wouldn’t spill when her hands shook trying to hold it.  We also started using a smaller pitcher so that she could still pour her own milk.  This new one was exactly the same design and white color as the old larger one (Priscilla had found both in thrift stores on separate occasions), so at least that felt familiar and not so much of a change or a loss.

A week later we introduced a new assistive device.  Priscilla had become unable to get up from the couch or a chair to get back into her wheelchair in order to move about.  By watching videos online, we’d learned a technique by which I could assist her in getting up.  I’d squat down in front of her and grab her around the waist, she’d hold onto my shoulders, and I would let my weight fall back to pull her up out of a seated position.  The ideal was then for me, in one smooth motion, to turn her 90º and lower her into the wheelchair, which had been placed at right angles to the chair or couch.

The biggest potential danger in this technique (besides forgetting to lock the wheels) was that Priscilla or I could lose our grip and then I would fall backwards onto the floor.  If she were fortunate she would just fall back into her seat, but much worse was possible.  So we looked around for resources and found a tough fabric “transfer belt,” wide and snug, with pairs of handles in the front, on the sides, and at the back, padded on the inside for comfort.  Now I would almost certainly never lose my grip, and I could still transfer her safely even if her grip on me loosened.

The transfer belt. “As always,” I wrote in my journal, “we were trying to see these devices as friends that helped us keep living our lives as we wanted, and not as markers of decline.”
The transfer belt. “As always,” I wrote in my journal, “we were trying to see these devices as friends that helped us keep living our lives as we wanted, and not as markers of decline.”

The one place we didn’t start using the transfer belt right away was to get in and out of the car.  The passenger seat was low enough to the ground that even after chairs and couches became a problem, Priscilla could still get out of the car by herself.  She would swing her legs sideways and place her feet firmly on the ground, pull against the side of the car and the handle of the open door, and propel herself up and out.

But only two weeks after we got the transfer belt, she found she was no longer strong enough to do this.  We’d driven to church and were in the parking lot before the service.  We hadn’t even brought the transfer belt because she’d never needed it in the car seat before.  Mercifully we had a houseguest at the time who’d come to church with us.  She and I attempted various methods to see whether, working together, we could somehow help Priscilla out of the car.  (For example, one pulling through the open door and the other in the driver’s seat pushing from behind!)  The third technique we attempted worked, and we got into the service about on time.  But Priscilla was so upset, thinking she might never be able to attend this church again, that we changed the plans we’d made to go out to lunch with a student afterwards.  Instead we bought a rotisserie chicken and entertained him and our houseguest back in the safety of our home.

Shortly before this happened, Priscilla had been offered a potion (perhaps the most positive way to describe it would be as an “herbal remedy”) that supposedly could slow down or even stop the progression of her symptoms.  It wouldn’t necessarily restore lost function, but it might extend her life.  She declined it, and not only because we both knew that nothing of the kind had ever been shown to have any efficacy against ALS.  Rather, she said, “I don’t want to go on living like this, I just want to die!”

One of God’s greatest mercies to us was to give Priscilla, even in dark times like these, opportunities to use her unique gifts to continue helping others.  This showed her that God still had a purpose and meaning for her life.  I’ll describe the opportunities that came at this time in my next post.

Priscilla’s guide to holiday entertaining from a wheelchair

AUDIO VERSION

 

The week before Priscilla barely made it out of the car, we also nearly missed church.  That Saturday evening she wasn’t sure she’d feel strong enough to go.  She even alerted a couple of people not to expect her so that no one would worry about her absence.  But the next morning she wanted to give it a try and she held up fine.  At church she visited all around, asking people conversation-starter questions such as, “So, what are you doing for Thanksgiving?”  In the process she discovered three people who had nowhere to go for the holiday that Thursday.  “Come and have dinner with us!” she unhesitatingly told each of them.

We’d already arranged to host two international students, so now there would be seven people for dinner, counting ourselves.  Priscilla wanted to entertain them at her customary fancy table, with china, crystal, silver, and linen, and they all agreed to help set up.  Our guests arrived mid-afternoon on Thanksgiving, and under her direction they added an extra leaf to the table, put on a longer tablecloth, and set seven places formally, complete with name cards such as you would see at a wedding.  Priscilla made an illustration to show where the various forks, knives, spoons, glasses, etc. should go, and our table setters followed it scrupulously.

A place setting at our 2013 Thanksgiving dinner.
A place setting at our 2013 Thanksgiving dinner.

We served pork tenderloin with apricot glaze.  (While delicious, this was less than a tenth of the amount of meat Priscilla had prepared for Thanksgiving a few years earlier, when she’d roasted two 25-pound turkeys for a dinner for international students!)  Guests brought salad, rolls, vegetable juice, wine, pie, and baklava.  We served a cheese plate before the meal and ice cream on the pie afterwards, with jasmine tea, whose leaves could be observed uncurling in a clear glass teapot.  After a few rounds of games, our guests reversed the process of the table setup.  It took three loads in the dishwasher to clean all the dishes, in an operation that extended well into the next day, but everything else was put back to rights with minimal fuss.  A grand time was had by all.

The tree our friend helped Priscilla decorate.
The tree our friend helped Priscilla decorate.

A houseguest arrived the next day to spend nearly a week with us.  One day she and Priscilla unpacked the new 4½-foot-high pre-lit “realistic-looking” Christmas tree we’d purchased to make decorating for the holiday easier.  They got all the branches smoothed out and the overall shape symmetrical without any gaps or bulges, and that was enough for one day.  A couple of days later they put on the decorations.  None of this would have happened if the guest hadn’t come at this time.

The next day, someone posed an interesting question on the blog I was writing.  I’d begun it as a resource for people and groups who were using the study guides I’d published, but it had quickly been taken over by people who simply wanted to ask questions about the Bible.  I was happy to try to answer these.  The question I got that day was, “What did Jesus mean by ‘night is coming, when no one can work’?”

After discussing that statement in its context in the gospel of John, I drew this application:  “So for each individual follower of Jesus, ‘night’ is the time when we are no longer free or able to be active in ministry.  It can certainly describe our death, but it could also refer to times of persecution, imprisonment, or incapacity due to illness or accidents.  The implication is that we need to make full use of every opportunity while we have it.”

This question was actually very timely for me, and for us, personally.  Priscilla and I knew that the Grad IV Christmas party was coming up in four days.  We’d grown close to this group of students, and this would be our last chance to see them before they scattered for several weeks for Michigan State’s winter break.  We didn’t know what things would be like for us after that, in the new year.  So we really wanted to attend the party.  But it was going to be held at the same house where the summer Bible study had met, where there were accessibility issues.  I shared the blog question, and my response, with Priscilla, and we both had the same thought.  We could still attend the party, if we hosted it.  Wanting to “work while it was yet day,” we asked if the event could be moved to our house.  The students agreed.

We spent much of Saturday, December 7, 2013, preparing for the party, cleaning, organizing, and decorating a bit more.  By the time the event was scheduled to begin, we had chairs deployed throughout our living room and dining room, and shrimp deployed on a platter.  The students arrived steadily from 6:00 on, bringing appetizers, snacks, and desserts.  Eventually thirteen of us shared in a service of lessons and carols and then a lively White Elephant gift exchange.

We had wondered how to bring the event to an end gracefully by our “bedtime,” which was now relatively early by student standards.  But Michigan State was playing Ohio State that evening for the Big Ten football championship, and by 9:00 most of our crowd had self-selected to relocate to places where the game was being shown.  The rest left after a few rounds of Catch Phrase.  After a quick cleanup we went right to bed.  “We told ourselves,” I recorded in my journal, “that by God’s grace we’d hosted the party and lived to tell about it.”

In the report we sent out to our Grad IV prayer supporters about this Christmas party and our other activities at the end of the fall semester, we cited as our inspiration a further saying of Jesus from the gospel of John: “My food is to do the will of him who sent me, and to finish his work.”