“Don’t give anything away”

AUDIO VERSION

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

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

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

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

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

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

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

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

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

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

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