Where the Light Gets In

by Kimberly Williams-Paisley

  I passed a few families and men at the railings, their fishing lines vanishing in the gray early evening light. This is our pier, I thought. I saw none of the tripods, reflectors, or bustle of a photo shoot. It felt strange to be there without Brad, who was in Tennessee (or so I thought).

  And then suddenly, out from behind the public restrooms, he appeared. His hands were in his pockets. He looked like a casual angel. Then he pulled one hand out, and in it was a ring. No one around us knew what was happening. The fishermen ignored us. An older couple chased after their children.

  Brad knelt on one knee and said, “So…will ya?”

  “Will I what?”

  “Will you marry me?”

  “Yes!” I said, just as we heard someone flush a toilet.

  “There go our lives,” Brad said.

  I giggled and knelt down on the dried-fish-gut-coated wooden slats with my fiancé, and we hugged. It was one of the happiest moments of my life.

  Until I called home a few minutes later.

  It began like a scene from Father of the Bride.

  “I’m engaged! I’m getting married!” was something like what I shouted on the phone. Mom’s stunned silence and then halting congratulations spoke volumes. She asked me if I was sure, and suggested that we didn’t know each other well enough. Dad, sensitive to my mother’s feelings, muted his enthusiasm. In fact, Brad had already discussed the upcoming proposal with him over the phone, unbeknownst to my mother and me. My father had told him that the decision was mine to make but that he would be supportive of both of us.

  My conversation with my parents ended abruptly, and I knew Mom had left much unsaid. I was hurt and disappointed, and my excitement lost a little steam, but I downplayed it. For one of the first times in my life, I was certain about what I was going to do in spite of my mother’s disapproval. I felt as if there was no way I could not marry Brad.

  The first time I saw my mother after I got engaged, she invited me to breakfast with my father but without Brad. We huddled in a booth at Joni’s Coffee Roasters in Marina del Rey with several cups of coffee and eggs we hardly touched. As Dad sat silently next to her, Mom told me she was concerned. Brad and I didn’t have enough in common. She couldn’t understand why I thought he was the one. And on and on. It was a cross-examination and I was the defendant.

  I fought hard for our choice, knowing that I couldn’t show any weakness or hesitation. I trust him. I love him. I need him. I want him to be my husband, Your Honor.

  “I know he may not be who you’d pick, Mom,” I said.

  She was crying by the time she and my dad dropped me off at my house in Santa Monica. Brad appeared on the porch to say hello, unaware of our breakfast conversation. I think my mother must have asked my father to take her away. She was probably embarrassed and didn’t want to hurt Brad’s feelings. Dad accelerated as she rolled her window down and waved manically with a big plastic smile on her face.

  “What the heck was that?” Brad asked.

  I shook my head. “I’m really sorry,” I told him. There was no doubt he was wounded. But there was nothing he or I could do. At least for now, Mom had distanced herself from us. My choice was clear: my fiancé over her.

  —

  Two and a half months before the wedding, we got the news that Brad’s aunt Rita had suffered a recurrence of breast cancer. She was to begin treatment soon after Christmas. Brad has a small family, and we needed to go home to support them. My parents had flown from New York to be in California for the holiday, now that all their kids lived there. But as Brad’s betrothed, I knew the right thing for me to do was return with him.

  We told Mom and Dad the news. Our plan was to stay with my family through early Christmas morning, then fly to West Virginia. To me, that was a fair compromise. But to my mother, whose anxiety had only grown, it was as though I’d said we were moving to Alaska and would never return. It was the first time any of Mom’s three kids would break away from our tight-knit tribe to support someone else’s family. It gutted her.

  The following day, Brad and I drove to my parents’ hotel. Mom sobbed on a lounge chair on the deck outside their room with my father next to her, comforting her. She had covered her face with a washcloth. She swiped it aside and looked at Brad. He held out his arms to hug her. She shrugged him off and stood up.

  “No,” she said, and went inside. I was mortified.

  She continued to cry off and on for two days until we left. This was not the “Go for it!” mother of my childhood. Her fear seemed out of proportion with our family “crisis.” Adding to my pain, my father appeared to abandon me to take her side. Jay and Ashley tried to remain neutral and be sympathetic listeners.

  The break with my parents had some silver linings. It fortified my bond with Brad. And at the height of the flood tide of tears, he and my father connected in a brief phone conversation, commiserating about the women they loved as if they’d known each other for a long time.

  “How’s Kim doing?” my father asked.

  “She’s cryin’.”

  “Oh, man.”

  “How’s Linda?” Brad asked.

  “Crying.”

  —

  We rose early on Christmas morning, flew to West Virginia, and celebrated with Rita and the rest of the family. We were so glad we did. It was the last holiday when everyone in Brad’s family would be together. His aunt died eleven months later.

  That Christmas, a question began to nag at me, and it would persist even during some of the good times to come: Is this extreme behavior somehow beyond her control? What in the world is going on with Mom?

  After our wedding, Mom warmed to Brad. Maybe for the first time, she saw him through other people’s eyes. Our friends and extended family had surrounded us in the Pepperdine chapel and sung, cheered, and spoken on our behalf. Maybe she realized that we were committed—there was no going back. Maybe it was the magic of the ceremony that healed the scars of the previous year, exorcised my mother’s bitterness, and awakened more than just acceptance of her son-in-law. She loved him.

  Brad and I were happy to forget the discord during our engagement and celebrate the harmony of our marriage. I went back to work on the sitcom; Brad toured and finished a new album. He wrote the song “That’s Love,” with the lyric “You’ll say ‘I like it when your mother comes to visit us.’ That’s not a lie, that’s love.” It made my mom laugh.

  We imagined that the tough times with her were behind us.

  But the challenges of her new job at the Michael J. Fox Foundation were just beginning. Recently she’d been having trouble reading as quickly as she used to, and sometimes she struggled to find the right word when she spoke. It wasn’t a persistent enough problem that she shared it with anyone, but it did affect her confidence on the first day of work. She hid her fear as best she could and shook hands with her new colleagues, offered hugs, and laughed to cover her nerves.

  In many ways, she was at the top of her abilities. She’d already proven herself to be a brilliant fundraiser at Sloan Kettering. Headhunters had sought her. She’d happily left the world-class cancer center to become director of development at the far smaller Fox Foundation, to help champion an effort to cure Parkinson’s disease. Its staff was smart and idealistic, on a bold mission to fight a neurological illness that affects a million people in this country alone, including Fox himself.

  She was about to turn their idea of fundraising upside down. It wasn’t just about collecting dollars, she would tell them. It was about offering rare opportunities to people they would come to know and often genuinely adore. She realized that she was by far the oldest person in the office and soon emerged as a mentor. “It’s never an insult to ask someone for too much money,” she told her protégés. “We are giving them a gift, an opportunity to participate in this amazing organization.” She knew philanthropists were more than eager to be generous.

  I admired her technique: Get to know a prospect well after many conversations and, best of all, vi
sits. Love them. Love what they love. Mom was the master of the hardest part of the job, The Ask (i.e., “We’d like you to consider pledging a million dollars”). She taught everyone how to do it.

  She walked into each donor visit with excitement and high expectations. She sparkled, warmed up the conversation, and spoke from her heart. Then came The Ask. The next step was key. She let the request hang in the air, maintaining eye contact and waiting without saying a word for as long as it took to get a response. Inexperienced fundraisers often filled the silence too soon, apologizing or scrambling to lower the amount. Not Mom.

  When donors agreed to a gift, my mother knew how to show gratitude and appreciate one of the best moments a good life has to offer: giving to a good cause. Back in the office, she celebrated the win with everyone on the team.

  Mom followed up every meeting with a personal and heartfelt thank-you note. She insisted on paying attention to small details. Her finishing touch was a gold paper clip—the final version of every important letter or proposal was always secured with one, like a gilded ribbon on a present.

  She was also a friend to her co-workers. One day she went looking for a member of her team and found her in the cramped supply closet, one of the only private spaces in the small office. The woman was organizing everything, and she was crying. Mom closed the door enough so that they were alone, and hugged her. With no room to sit down, they stood together, surrounded on two sides by shelves full of gala invitations, envelopes, and toner cartridges. Mom listened and empathized as her colleague privately shared a non-work-related problem. The two of them reorganized everything, alphabetizing and moving boxes from one shelf to another and back, until her friend was ready to put on a professional stiff-upper-lip face and return to office work. The care my mother offered ran deep and was one of her strongest traits.

  But the new job highlighted increasing challenges. In one meeting, her boss, co-founder Debi Brooks, laid into the development team about their lack of attention to forecasting and budget. It was fair criticism aimed squarely at my mother.

  Another problem was that on expeditions with Debi in the constant quest for new funding, Mom got nervous behind the wheel of their rental car, afraid she would get lost or cause an accident. So she delegated up, asking her superior to do the driving.

  She told no one but Dad about her growing dread that she couldn’t handle important parts of her job. She was having trouble sleeping again, and fretted about the workday to come. Dad woke up one winter night and knew without opening his eyes that Mom wasn’t in bed with him. He found her in the guest room with the door open.

  “I don’t know how to run a meeting,” she told him. In some ways, this wasn’t a surprise. Dad had seen her suffer with simpler tasks, such as learning some of the basic facts about Parkinson’s. He worried that she’d taken on too much. My parents sat together on their old saggy bed, the first one they’d slept on as a newly married couple. Dad scratched her back to soothe her, and suggested starting with the basics.

  “Thank them,” he said. “Talk about what the meeting is for. You’ll get better at this the more you do it.”

  —

  One afternoon in 2004, my father was sitting on the living room couch when my mother came down the stairs naked. She was puzzled.

  “Where’s my—” she said, and stopped. Mom wasn’t the kind of person to walk around the house without clothes, even if just the two of them were at home. They stared at each other for a second, then started laughing. Dad got up, hugged her, and led her back upstairs to get a robe. He was less concerned than amused.

  During one of her fundraising trips to LA, Mom and I met for a drink at Shutters in Santa Monica, close to my house. A damp ocean breeze rolled over the deck, where we sat looking out to the dark beach just yards away. Far from the office, Mom was able to relax and have fun. And I was relieved that the two of us seemed to be getting closer again.

  We ate Cape Cod potato chips at a small table next to a few other patrons. I ordered a vodka and cranberry juice. Mom probably sipped an apple martini. She’d given up bourbon on the rocks in favor of the sweeter green cocktail, and joked that it looked healthier.

  “Loaded with vitamin C,” she said, and winked.

  She asked me about work, and I filled her in on the farm Brad and I had just bought in Tennessee.

  “Deer, wild turkeys, and some Canada geese live on the land. There’s a soulful old house and a pond and a tiny graveyard from the late eighteen hundreds. Apparently an albino buck roams the woods nearby, though we’ve never seen it,” I rambled on.

  Finally Mom brought up what was really on her mind.

  “Something kind of weird has been happening with me lately,” she said. One day back home, when she pulled out her checkbook to pay for groceries at Stop & Shop, she forgot how to write the numbers. Another time, while people waited behind her in a line, she struggled to sign her name.

  Odd, I thought. But almost immediately I dismissed it.

  “That kind of thing happens to everyone from time to time,” I said. “You need more sleep.” I wasn’t going to let her concerns get blown out of proportion again, and I didn’t want to tell her that I was worried the new job was too demanding.

  To our right, we could see the Santa Monica Pier, and part of the Ferris wheel Jay and I used to ride, its lights blinking as it turned.

  “You need to relax more,” I added. “You’re putting too much stress on yourself.”

  She nodded. “You’re probably right.”

  —

  But back in Rye, New York, at an annual exam with my mother’s internist in July 2004, there was just this one thing. Mom at sixty-one appeared to be healthy in most respects. Her weight was 130, her blood pressure normal at 120/70. She registered fine cholesterol numbers, and previous issues with migraines and asthma had been resolved. Even her neurological exam was not unusual. But Silvio Ceccarelli, M.D., noted in her record that she had struggled a little with a few brief mental exercises he’d given her in his office. Dad was there to watch.

  “Count backward from a hundred by sevens,” the doctor said. “Like this: a hundred, ninety-three, eighty-six, and so on, okay?”

  “Oh! All right!” Mom slapped her thighs as though firing a starting gun. “Let’s see…eighty-six. So, by sevens…eighty-six, seventy…nine!” She aced a few more numbers, but then asked to hear the question again, and wasn’t able to produce more than one or two correctly after that. There was a false calm in the office. Mom looked to my father and shrugged, forcing a smile.

  The next task: “Who is the current vice president?”

  “Yes,” she said with a grimace. She knew that one. They followed politics closely. The vice president was a Republican. She hadn’t voted for him. She could picture his face. She patted her chest. “The name. The name…” Silence.

  “Dick?” the doctor prompted after a few seconds.

  “Cheeney!” she said. “Choney. You know. Cheney!”

  “Yay!” Dad said.

  Dr. C. scribbled more notes and referred her—“if you want to pursue this”—to a neurologist in the same practice, for further examination. That specialist ruled out Lyme disease but wasn’t sure what else might be wrong. Maybe nothing.

  For several months after that visit, Mom and Dad sought to get long-term-care insurance. But the paperwork filled out by both physicians expressed a slight concern about the well-being of her brain. Nerves crippled her as she fumbled through intelligence drills given to her by an insurance company over the phone. There would be no safety net of coverage.

  For months, Mom and Dad stopped further tests and avoided talking about their concerns with us. After all, Mom was still able to work, and held hope that the stress she felt would subside and her mind would clear. She didn’t want to alarm the family. I think she was fearful that if she continued to seek other opinions, someone would discover that she wasn’t as smart as we all thought she was, or that it was her own fault she couldn’t get her stress u
nder control. My parents never talked with each other about the possibility of dementia.

  But her difficulties on the job were rising to a level impossible to ignore. She had to acknowledge to her colleagues that it took longer to write proposals to donors. That she wasn’t as comfortable as other foundation directors when speaking to large groups. That it was hard to keep up with the administrative parts of the work in the office. One supervisor’s evaluation reported that Mom found it challenging to get her voice heard among her peers, and that often she gave up trying to be heard at all.

  In the fall of 2004, she asked to be reassigned to lesser duties, at lower pay. “She faced the uncertainty of change with grace,” her supervisor wrote. Just a few months later, she and Dad decided they could no longer bear the uncertainty. They set out on a new and more serious quest for a diagnosis.

  It began with PET and CT scans. Those revealed mild cerebral atrophy—some of her brain cells were withering away. The scans looked almost normal, her latest neurologist, Nancy Nealon in New York City, told Dad. That meant that, like others before her, the doctor couldn’t explain the loss. Dr. Nealon set up the most intensive mental testing my mother had ever had, stretching out over three months, from August until October 2005. The extent of this further analysis was kept secret from me at Mom’s request until later that year.

  —

  I didn’t know the weight of the burden they were carrying when my parents showed up in Tennessee for Christmas with beautifully wrapped presents to put under the tree. Given our recent history, I’d worried about their visit. But my anxiety revolved around wanting Mom’s approval of my new home and my new life with Brad. I wanted her to love the way we were living, to feel comfortable in our home, to admire our Christmas tree. I wrestled with getting a real one or a fake.

  My mother had always placed a lot of emphasis on the tree. It was the centerpiece for every Christmas. She adored living, aromatic evergreens and thought synthetic versions were tacky. But artificial ones were more practical. They could be reused every year, and the needles didn’t scatter all over the floor.