Where the Light Gets In

by Kimberly Williams-Paisley

  I sat numb behind the rest of my family. I don’t think my mother shifted in her chair or moved a muscle during the doctor’s monologue. I don’t know if she understood it.

  Dad scribbled notes, as he had his entire career as a journalist. Writing was his defense, allowing him to distance himself from a crisis while it was happening and make sense of it later. He asked about medications. Mom already had prescriptions for Namenda and Razadyne, two drugs to heighten memory and awareness in Alzheimer’s patients. The doctor said she could keep taking them if there were no negative side effects. There was no evidence that they were effective against PPA, but his team was in the middle of a study to find out. (Years later, he would report that Namenda didn’t help people like my mother. It wasn’t clear that any other AD medications were effective, either; Mom had tried one, Aricept, suffered stomachaches, and given it up.)

  Without changing his clinical tone, the doctor addressed two of the most emotional issues. “You should think about retiring now,” he told Mom. Soon her job would get to be too difficult. The idea had already occurred to her, she said, her voice flat.

  “And I am very concerned about your driving a car,” he said. None of us nodded. We barely breathed. We knew that driving was an explosive issue between Mom and Dad. Not today, I thought. Leave it alone for now.

  Jay helped to change the subject by asking whether the rest of us were at risk of inheriting PPA. It was a gutsy question. Over the previous few months, I’d worried every time I fumbled to find the right word or forgot the name of someone I’d met several times before. We braced ourselves for the answer.

  “It doesn’t appear to be inherited,” Dr. Mesulam said. Later he and other researchers would report that specific gene mutations may in fact be linked to some cases, but no one else in our family had ever been stricken by it as far as we knew.

  I continued to yearn for some fresh hope for my mother, maybe a story about one patient who’d beaten the odds. It never came. There was nothing left, except the growing realization that now these doctors needed us. PPA was rare enough that my mom had become a valuable research subject. It was time for more testing. All of her wrong answers and mistakes, though painful for us, would be important data for Dr. Mesulam and his team.

  He offered a brain-donation form for us to fill out. If Mom chose to allow an autopsy of her brain, researchers might find out more about what had happened to her and why. The analysis of diseased tissue might open new avenues for treatments or cures. His office would let us know the results of future studies. And we would get confirmation of her diagnosis—a final iron-clad opinion after her death. It was the smallest of consolations, and jarring particularly to Jay.

  He told me later he’d recently visited a morgue as part of his paramedic training. After the doctor suggested brain donation, Jay pictured Mom there, imagined the room where pathologists performed autopsies. The thought sickened him. How would brain donation help Mom? It wouldn’t. The suggestion seemed callous at the very time my mother needed every remaining synapse in her head. All of us knew we wouldn’t be able to sign away her brain in the course of a day like this.

  Mom said nothing and asked no questions. She was escorted away for further evaluation.

  —

  The rest of us crowded into another small room for a session with a social worker.

  “Tell me about your marriage,” she said to my father.

  “I call her Scout,” Dad said, and then he couldn’t speak. Until then, I’d rarely seen my father really cry. He sensed that the three of us, behind him, were moved by his silence. He turned toward us and saw my tears. “You too?” he said. He turned back to the social worker.

  “Scout’s been a guide for me all my married life,” he said. “She’s led me through hard times. Showed me how to do things I couldn’t have done alone.”

  Now I was crying harder. I thought about the baby inside me and realized for the first time that he or she wouldn’t know my mother the way I’d known her. How much time will this child have with her? What is our life going to be like without Mom?

  And then: What is life going to be like with Mom?

  Our social worker said few words as the four of us talked freely for the first time about our fears and loss. How could we stay in touch more? How could we support our father? How could we plan for the future? The session was soon over, and we’d asked more questions than found answers. We were sent back to the waiting room before we were ready.

  Mom emerged from another office and joined us. She was red-faced, shaking her head. “Awful,” she said quietly. “Awful. Awful. Awful.”

  Dr. Sandra Weintraub, a professor of psychology, behavioral sciences, and neurology at Feinberg, was by her side. She didn’t volunteer any explanation for Mom’s sadness. Later, after reading a clinical report of the results, we saw that my mother had given up in the middle of a test Dr. Weintraub administered. The doctor let us have a moment alone.

  “Do you want to leave?” Dad asked. It would be easy to slip away because it was time for lunch. Each nod of her head spoke louder than words. Yes. Hell yes.

  We ushered her into the elevator.

  “Going down,” a robotic female voice said after we pressed the button for the street level. When the doors opened, Mom took one step out into the lobby and began sobbing. Her body shuddered and she couldn’t move her feet. We wrapped our arms around her in a tight bundle. We stood right there in the lobby instead of hustling her off to a private place where no one would see her breakdown. No more charades.

  —

  It was time to decide whether we would return to the doctor’s office for more tests that afternoon. We went to the first restaurant we saw, and quickly realized we were out of place. The crisp white tablecloths accented with delicate bud vases would’ve been just right for a birthday or anniversary. We were morose.

  My mother didn’t want to go back. We convinced her to endure one last scheduled session with Dr. Weintraub to see if she could give us any further advice. If nothing else, maybe Mom could register a complaint. She needed to vent her anger and sadness about the diagnosis and the debilitating way she’d learned the latest bad news.

  We held her hands on the street and encouraged her to take deep breaths. I don’t remember smelling any more chocolate in the air.

  —

  The testing had to end. We made that clear in the first thirty seconds after returning to Dr. Weintraub’s office. I know she was disappointed to be losing a research subject, but she took our decision gracefully. I was proud that my mother was able to stand up for herself.

  “And I never,” Mom said, shaking her head and pointing in the direction of the door, “want that…other man.”

  “She doesn’t want to see Dr. Mesulam again,” Dad clarified. He was no doubt a brilliant doctor and scientist. My father learned later that he also had a big heart and a warm smile. It must have been hard for him to see our pain when he was delivering his diagnosis. But Mom elaborated.

  “Awful,” she said. “He…is…terrible.” The four of us nodded in support.

  “That man,” Dr. Weintraub told us quietly, “is my husband.”

  Oooh. We laughed awkwardly. Sorry…

  This was a shocking moment of levity in the midst of a hard day, and Dr. Weintraub handled it with grace. Perhaps she’d heard the same feedback from others whose expectations had died on this floor. We asked more about the challenges we’d face in the coming years. She couldn’t impart much new information. But she confirmed that my mother would need help with everything, and she recommended medication for her sadness. Mom was already taking Wellbutrin, with no side effects, for depression. Dr. Weintraub suggested switching to Paxil or Effexor, generally more effective for PPA patients. Apparently, Dr. Mesulam left issues about their patients’ moods to his wife. She also recommended that Mom start speech therapy. Some evidence indicated that it might help temporarily.

  Finally we raised one of the most sensitive questions relatives ask
, about life expectancy. Dr. Weintraub wouldn’t answer the question outright. It varies greatly from person to person, she said. We heard elsewhere that the longest any PPA patient had survived after diagnosis was nineteen years.

  “What should I do?” Mom asked her. Her first question.

  “Go home and be a grandmother,” Dr. Weintraub said.

  I thought, How will she even do that?

  My mother was nervous as she sat at a glass table in front of an all-glass wall facing the beach. She and her friend and colleague Veronique, whom Mom called “V,” had been invited into an immaculate house in Santa Monica, the home of a man with Parkinson’s. They were there to share the latest information coming out of the foundation and to ask for a larger donation than the couple had previously given. His wife had led them into a large room with a marble staircase and a high ceiling, and told them her husband wasn’t feeling well but that she’d love to hear what they had to say.

  Following a plan built to Mom’s strengths, V was to speak first in the meeting, outlining the latest news about research to find a cure for Parkinson’s. Though Mom had trouble understanding the scientific material by then, she’d become very good at reaching for what her colleagues called “transforming gifts,” dollar amounts higher than the comfort zone of the donor.

  I can imagine that she felt exposed, fearing that V and the wife were watching her closely, maybe listening for mistakes or judging her. She had been told weeks earlier in Chicago that she would soon lose most of her ability to speak. Now she dreaded the loss of a few important words, the ones asking for more than this very generous couple had ever given before. She didn’t want to come off looking unprofessional or unprepared.

  My mother had made it clear that only family members and one or two close friends were to know what we’d learned during our traumatic time in Chicago. But just weeks after she and Dad got home, she revealed her diagnosis to the Fox Foundation, a group that had become a second family to her. Without drama, she told them why she’d have to retire at the end of 2006.

  Her co-workers were startled and saddened by her admission that she was struggling to use the very fundraising skills she’d taught them. Those who’d been disappointed with her job performance over the previous months embraced her—and worried about her future. But Mom seemed resilient and wasn’t much open to sympathy.

  She publicly buried her sense of dread about her condition and aimed for even higher gifts for the foundation. It was especially bold of her to take this final fundraising trip to California in November. What did she have to lose? She wanted to go out with a bang.

  In Santa Monica, V delivered her research report with ease. Then, before Mom could make her appeal, the woman’s husband felt well enough to join them. In an instant the conversation warmed. His presence alone had leveled the playing field for my mother, as she realized that both of them struggled on the same team. This might have been my mother’s moment to be honest with the couple about her own illness, but she wasn’t ready to do that. Nevertheless, she seemed to be inspired and empowered by his presence, feeling a glow of mutually held goals.

  She settled into her own playbook. She looked into their eyes. Thanked them for all they had done to support research.

  She said, “We hope that you will consider doing something very special this year by increasing your support and making a gift of—”

  She froze, silent. Nobody moved. I wonder what the couple must have thought. Is she coming up with this figure on the spot? Is she afraid to ask? Is she hiding something?

  She tried again, rephrasing the question, but again when she got to the dollar amount the crucial words hid from her. She started humming. Sometimes this nudged her memory.

  “Ahmmmmmm.” The man and his wife looked uncomfortable. Finally Mom spoke.

  “Twenty-five thousand dollars,” she blurted out. She looked unprepared. Unsure. The couple might not have agreed to the donation if she had presented it perfectly, but they certainly weren’t going to now. It was the man who let them know it wasn’t going to happen this time. My mother knew she had missed her shot. She and V ended the meeting as quickly as they could and walked to the rental car.

  There, freed from a fishbowl of observation, Mom started giggling. V had yearned for a happy ending to the appointment, but she knew what my mother needed now. They laughed from their bellies, burying their disappointment and dispelling the remnants of Mom’s nervousness.

  My mother lost that round, but not long afterward she won another. Remarkably, she was able to bring home one last donation for $2 million, one of the biggest gifts the foundation had so far received, and the largest amount ever given by a family that didn’t have a personal connection to the disease. Her colleagues attributed much of that success to Mom’s personal connection with the donor. She got down on the floor and played with their four-year-old son. She laughed easily and often during their time together and displayed an obvious passion for her cause. She didn’t need words to make The Ask and land the gift.

  Weeks later in December, as the New York City streets sparkled with colorful lights and holiday glitter, Mom knew it was time to go.

  It was surreal and strange to her colleagues that she was leaving. My mother worked hard at her desk, determined to finish the job well, after almost everyone else had left for the night.

  —

  In early 2007, Ashley threw a surprise party in New York. It was meant to honor both of my parents’ retirements, but my sister had a bigger plan in mind. She had written a dinner speech recapping Mom’s diagnosis, projecting tough challenges in the years ahead, and asking for help from close friends. In a way, she was mirroring the process for fundraising work—not the standard agenda for a festive celebration.

  All the fifteen or so guests knew about my mother’s dementia after weeks of hushed individual briefings from Mom and Dad. They were all close family friends who had known us for years. The talks about the illness were always uncomfortable and usually ended with not-so-subtle pleas for privacy, like “We’re not telling the world about this.” Now my sister was ready to deliver an outspoken message, aimed particularly at Mom: We would no longer hold secrets, but we were there to support and love her.

  I was getting close to the end of my pregnancy in Tennessee and couldn’t travel. I hated not to be able to go but was there in spirit.

  One of my mother’s best friends, Anna, took a video of the evening, so I was able to watch it later. It captured the frenetic but loving energy Mom radiated at the time. It revealed some of the early symptoms of her disease. It also heightened my love and appreciation for my sister.

  The recording is grainy, and the colors are dull in the evening glow of our dear friends Sheelah and Bill’s house. Mom brightened the room when she arrived and shrieked, realizing that most of her favorite people had gathered to surprise her. She pointed at the camera with both hands. My dad stood next to her with his mouth open. He hadn’t known about the party, either. My mother yelped to see each new person, covering her mouth, laughing. She noticed Veronique across the room and screamed louder than ever, rushing to hug her. Mom’s childish giddiness overrode any nerves she might have felt about her then-constant struggle to find the right words.

  “I am absolutely floored!” she said, looking around at her best friends.

  “You had no idea?” Sheelah asked.

  “I…nah…no!” Mom stuttered. “I can’t believe that!”

  She should have said, “I can’t believe this”—a small difference that probably went overlooked at the time. But she often flubbed single words, disrupting her sentences with a kind of static.

  “I just love that!” she said, looking around at the party and bouncing up and down. She rushed at the camera and hugged Anna, turning the frame sideways for a moment and showing a glimpse of Veronique’s brown shoes. She walked into one of the dozen or more white ribbons dangling from helium balloons on the ceiling and didn’t seem to realize what was brushing against the side of her fa
ce, but she saw an opportunity for a comic bit. She put her hands on her hips, smirking at the camera.

  “What are you doing?” she asked, her face deadpan for a second, the string tickling her mouth as she talked. There was laughter from off camera.

  “It’s Ashley!” Mom yelled, grabbing my father’s arm again, meaning, This surprise party was thrown by Ashley.

  “I know,” Dad answered. The story had been told several times in the span of a couple of minutes.

  The party moved to a cozy dining room barely large enough to accommodate everyone. Tall candles lit the two long tables covered with wineglasses and generous servings of casseroles, potatoes, and cooked vegetables. V sat next to my dad, and Mom sat several seats away, laughing in the center of the packed and boisterous group, exactly where she liked to be.

  My father stood up to make a toast.

  “I was just thinking,” he said, “how remarkable my life has become.”

  Someone giggled.

  “Oh, what?” Dad said in mock anger. Uproarious laughter again.

  “I feel,” he continued, “I am Gurney in Wonderland tonight. And Linda is Alice, and we together have fallen down a hole to this remarkable place…”

  A nice metaphor, typical of my father, and perhaps somewhat rosier than what had actually happened. My sister, sitting a couple of feet behind Mom, smiled as her eyes darted back and forth between both my parents.

  There. A bit of truth. I could see the weight Ashley was carrying, and the burden we all felt those days anytime we were in a room with my mother. Ashley was trying to gauge, Is Mom okay with this? Is she really happy? Or is she on the verge of breaking down? My sister had become like a mother taking care of a young child, trying to foresee the fall that could come before the toddler gets to the top of the stairs. Ash was vigilant.