This post continues the story I began in my previous post.
“I know we need help,” Priscilla told me towards the end of January 2014, “but I don’t know what kind of help we need.” She now had to use the transfer belt every time she changed locations in the house, so we were doing 15-20 lifts per day. I couldn’t pick her up from a seated position without her pushing with her legs, and they were getting weaker and weaker. They’d already collapsed under her during a couch-to-wheelchair transfer; we’d had to improvise a way to get her up off the floor. Priscilla’s back muscles were also getting weaker, so that sitting up straight (at the computer, for example) led to serious back pain.
We were getting plenty of practical help from friends with meals, snow shoveling, errands, and even minor home repairs. But we were about to be overwhelmed by the demands of Priscilla’s direct care.
A couple of days after she declared, “We need help,” we got our medical insurance company’s monthly newsletter. One article was about their nurse case managers who coordinated care for people with progressive degenerative conditions. “That sounds like us,” I said. I consulted Priscilla and we agreed to request one. A couple of weeks later we got a call from our new case manager, introducing herself. She was a delightful and no-nonsense person with whom we “clicked” immediately. She directed us to just the kind of help we needed.
With her coaching, I asked our doctor to refer Priscilla to a home health care agency. This would bring a nurse in to check up on her regularly, and an aide to help with showers twice a week. A physical therapist came to do an evaluation and sent someone to teach me additional range-of-motion exercises to keep pace with Priscilla’s advancing symptoms. A social worker arranged for an intake nurse to interview her for a palliative care program. All of this was set in motion within four days of our first conversation with the case manager. She had spoken of “rattling people’s cages,” and clearly she’d been able to do that. She was in the right line of work.
Priscilla’s back pain was becoming severe and she’d also told me, “I might need to go into the hospital.” Her ashen face and red-rimmed eyes confirmed this likelihood. The pain was worst at night, so I knew we had to be prepared if a crisis came then. I put my wallet, car keys, house keys, and cell phone in the pockets of my fleece and jeans and hung them on the back of the closet door. This was a “go bag,” like the ones the special forces keep ready, only a wearable version. Priscilla took off her jewelry and put it in the safe. We both knew we were getting ready for something.
It came less than a week after we were first introduced to our case manager. When it happened, she was a key resource once again. She’d first called us on a Tuesday. We celebrated Valentine’s Day that Friday with a special dinner: I made chicken and broccoli in ginger sauce, a favorite that Priscilla had been craving. While I was running errands a couple of days before, I’d picked up a dozen roses for her. Priscilla explained that her gift to me, a resupply of my favorite coffee, was on its way. We pulled out two “vintage” Valentine cards, the ones we’d exchanged in 1994, and presented them to each other again, with 20-year updates.
Priscilla could only get out of bed for part of the next day. Back pain kept her awake that night. By Monday morning she was in such pain that she phoned our case manager, who told her, “Call an ambulance and go to the hospital.” She really didn’t want to do that. But within two hours, the pain got so bad that she relented. In a light comic touch, just as the ambulance crew was carrying her out the door on a stretcher, a delivery person stepped around them and handed me a package: my Valentine’s Day coffee.
The back and neck pain were muscular, and the hospital was able to give Priscilla strong enough pain killers to allow her muscles to settle down and recover within a few days. Her doctors were notified of her hospitalization, and her neurologist asked whether she’d consider doing an EMG while she was there. Dr. A was available. “Why not?” Priscilla responded. At least it wouldn’t require exhausting travel to get to and from the test.
Dr. A inspired confidence the moment he walked into the hospital room. “I won’t do anything I don’t absolutely have to do,” he assured Priscilla, “and I’ll explain everything I’m doing.” With that she relaxed, and the pain became endurable because it would be pain with a purpose. There was no primal screaming, as there’d been throughout the two previous EMGs.
The doctor and his resident chatted light-heartedly at the start, but soon they grew silent and grave. True to his word, Dr. A pursued each component of the test only so far, said, “We’ve seen enough there,” and moved on. At the end he took both of Priscilla’s hands in his. “This is what you hope you’ll never find when you do one of these tests,” he began. “You have ALS, it’s throughout your body, and it’s severe.”
We weren’t stunned speechless. There were no angry denials that this couldn’t be. We were actually relieved and even grateful that somebody was finally living in the same reality we were. We’d suspected all along that this wasn’t going to go away as mysteriously as it came.
“How long do I have,” Priscilla asked, “six to nine months?” “When did you go to medical school?” Dr. A responded, “because that’s about right.” “It feels that way,” she explained. Six more months would have coincided with the average survival time for an ALS patient after first onset of symptoms. Nobody imagined then that she would live nearly two more years.
Dr. A considered the EMG results conclusive, but Priscilla’s neurology team wanted to confirm the diagnosis by ruling out two other slim possibilities, anti-GM1 antibody syndrome (an autoimmune condition) and paraneoplastic neurological disorder (damage to neurons from toxins from an undetected tumor). They wanted to leave no stone unturned, just in case her condition might be treatable.
These tests were specialized and had to be “sent out” for reading. I checked Priscilla’s confidential online chart every day. The results came in a week after she returned from the hospital. Everything was negative. This confirmed the diagnosis of ALS. Not that we’d suspected anything different at this point. But it was amazing how my heart had clung to any shred of hope, even one that my mind knew enough to discount. I couldn’t help breaking into tears of hopes dashed when I reported these results to Priscilla.
We shared Priscilla’s diagnosis right away with the growing list of people who’d told us they wanted to pray for her. In our email, we quoted from a letter that Frank Houghton, Amy Carmichael’s biographer, had written upon the sudden death of his sister. Noting that we often “speak of God’s mysterious ways,” he said, “I know there is an element of mystery. But I shrink from the suggestion that our Father has done anything that needs to be explained. It suggests a lack of confidence in Him if we find it necessary to try to understand all He does. Will it not bring Him greater joy to tell Him that we need no explanation, because we know Him?”
Priscilla had only enjoyed her Valentine roses for a few days before going into the hospital. Concerned that they’d wilt by the time she saw them again, she prayed they would last. They did. On this day when the diagnosis was definitively confirmed, they were still going strong, over two weeks after I’d bought them, an inspirational emblem of beauty and endurance.