In the spring of 2014, Priscilla made a third significant transition to a new assistive device. She also moved from a manual wheelchair into an electric one. Getting a definitive diagnosis had coincided with a watershed in the progression of her symptoms. We found out that she had ALS just as she was becoming unable to transfer, breathe at night, or move about the house without mechanical aid.
A physical therapy evaluation at the hospital had suggested that Priscilla’s arms and shoulders would soon become too weak for her to push herself in a manual wheelchair. Our home health care physical therapist (PT) agreed with this assessment, and so shortly after Priscilla was discharged, she began the paperwork needed to get a power wheelchair. But she warned that this could take several weeks.
“In that case,” Priscilla responded, “is there any way you can help me find a seat pad for my manual chair?” It had a “sling seat” that wasn’t very comfortable now that she was in it most of the day. We’d looked online for pads, but the size we needed, 15×15 inches, was small and the selection was limited. (The narrow seat did, however, allow Priscilla to maneuver well within our house.) “Oh, I think there’s one that size at the office,” our PT replied. It turned out that this was the only seat pad at the office. No one was quite sure how it had gotten there. But it was thick and comfortable, and a perfect fit. Our PT gave it to Priscilla to use until her power wheelchair arrived.
A mobility specialist from the medical supply company that would provide the wheelchair came and discussed all the feature options with us. He looked over our living situation and recommended a model that he thought would suit Priscilla’s needs well. He worked with our PT to complete the paperwork needed for a formal prescription, and our doctor signed it right away. This should have been enough for the chair to be ordered, assembled, and delivered.
But the process was unfortunately delayed for several more weeks by an agent in the company that handled equipment financing for our medical insurance. She kept insisting that we had to pay 50% of the cost of the power wheelchair. These can cost as much as a small car, so this would have been a formidable sum. But our insurance contract stated clearly that once we’d met our out-of-pocket maximum for the year (and the hospitalization had taken care of that), all equipment would be covered 100%. A customer service representative from our medical insurance even called over to explain this, and a notation was made in Priscilla’s file. But the agent insisted that the insurance representative was simply wrong, and that we had to pay 50%.
Clearly we were up against the proverbial “immovable object.” We started asking friends to pray that the issue would be resolved. This included the two people we were working with most closely to get the new wheelchair. From a couple of things our PT had said, Priscilla had felt free to ask her, “Are you a Christian?” and she’d replied, “Of course!” And the mobility specialist, after asking about our life stories in the course of his work and discovering we’d been in the ministry, shared his own deep faith. They both agreed to pray with us. I recorded in my journal at this time, “We’d asked everyone to pray, so we’d see what God would do. We trusted His purposes and timing in all this.”
The issue was finally resolved when the social worker our medical insurance had assigned to Priscilla called the recalcitrant agent and “read her the riot act” (as she put it). The wheelchair was ordered forthwith, and our insurance paid 100% of the cost, as it had been prepared to do all along. But by now the delivery had been delayed so long that Priscilla’s arms and shoulders had weakened to the point where pushing herself in the manual wheelchair was very difficult and painful. I was pushing her if she needed to travel any distance or move up onto a rug from the wooden floors.
So why the delay? No doubt God was pursuing many purposes, as always, in a complicated situation, but one thing we did find out about was that the delay actually helped save a marriage. The complex process of ordering the wheelchair, which was drawn out even more by the dispute over coverage, got us working with a variety of different people we wouldn’t otherwise have had the chance to get to know so well. One of them shared with Priscilla, who was always a sympathetic and encouraging listener, that her marriage was in trouble. Priscilla prayed and counseled with her, but then lost contact after the coverage issue was resolved. But over a year later, we learned from someone who knew this person that she felt Priscilla’s counsel and prayers had helped her get on a new footing with her husband. Their marriage was happy once again. This story gave us a small glimpse into the continuing purposes that God had for Priscilla’s life even as her disease progressed into greater and greater disability. It also helped us appreciate how much larger than our own personal concerns God’s purposes must be all the time.
As can be imagined, when the power wheelchair finally arrived, there was a learning curve. On her second day using it, Priscilla got stuck in a doorway, with the back wheels slanting against the frame in different directions, preventing movement either forward or backward. I had to climb up onto the chair, squeeze through the small remaining doorway space, and lower myself off the back of the chair so I could disengage the wheels from the motor, thus deactivating the automatic locks, and push Priscilla back out to safety.
But she’d always had great hand-eye coordination, and before too long she was zipping around the house swiftly and smoothly. Another “friend” had come into her life to help her keep doing what she wanted to do.