“Poverty is a theoretical construct. It’s not as intimate to you, and that’s why, since it’s tied in to a higher functioning part of your brain, it’s easier to let that go than your deeper feelings for Ellen. Maybe the plateaus will be more frequent if you follow the diet, do the exercise, meditate, take the medication I’ll prescribe.”
“Plug all the holes in the roof, not just one.”
Bring the rain.
He heard the whispered confirmation and the tremor in my voice. “The day will come when you won’t remember to diet, to exercise, to meditate, but with your brain, Dart, and these behavioral and cognitive interventions, that will be years from now.”
“I’m able to work since I got back from Illinois.” Even I could hear the hope in my voice and, despite everything I knew about FTD, I still asked, “Can I get me back?”
Dr. McCloud drew in a deep breath and didn’t answer.
His blue eyes blurred when I started to cry, because I could still feel grief, a complex, moral value that FTD had yet to take from me.
Frontotemporal dementia.
The words meant death sentence.
Ash’s hand gripped mine as we walked the beach, a slight breeze pushing us together. The day was sunny with no clouds. You’d never know it to be winter in North Carolina, like you’d never know looking at me that inside my brain, cells were dying. That trickle of dead brain cells no one could see would grow to a waterfall, isolating me behind the cascade from the rest of humanity. I shuddered with the thought of it, and Ash’s hand tightened in mine.
“I’m going to open mailboxes, all the while muttering ‘federal offense, federal offense.’”
“We’ll move to an island, where there are no mailboxes.”
“I’ll see a handsome stranger and want to take a little nap with him. That’s why they have sex in nursing homes, you know. All inhibitions are gone when the frontal and temporal lobes die.”
“Any time you want to take a nap, I’m your guy.”
“Why aren’t you taking me seriously?” I stopped and turned to face him. The wind ruffled his hair, and I could feel it tugging at my own. The sunlight put his strength into relief against the cloudless sky, his broad shoulders shadowing me, protecting me. He was so solid, so steady, big enough that when he said the words that made the difference, I believed him.
He cradled my face with both of his hands, and kissed me on the lips, his own warm against the coolness of mine. And then he hugged me close. That was enough, and then it wasn’t. The fear came back.
Behind the waterfall, I’d watch the world about me. As more and more brain cells liquefied, the waterfall would grow bigger, fall faster, cascade and plunge, the white noise of it drowning out any other voices. That’s what this disease would do to me. My brain collapsing, falling and that’s how. . . .
You’ll drown, in silence.
“I don’t want to die like this.”
Behind the waterfall.
“This thing inside my brain, Ash, I’m not going to let it push me over a cliff like Ellen did, or turn my head to the wall like my dad did. I’ll think of a way. I will, and then McCloud will be wrong, and the words he put inside my brain will go away. I just need a little time.”
You don’t have time.
I stopped and turned to face him again. “Ash, tell me that this will be okay.”
His hand clasped mine and he tugged me closer to the water’s edge where the sand didn’t give way beneath my feet.
“Jennifer asked me the same thing.” He looked away from me down the beach. “I told her that with the right diet, exercise, medications, research, we’d find a way. I think you’ve been fighting this disease and winning since your early fifties, because that’s when FTD hits most people, but with that big brain of yours, it didn’t even slow you down. I can promise you this, Dart. You’ll have time to take your idea for The Raindrop Institute to Salzburg and launch that legacy you’ve been crafting.”
“Robbie,” I breathed his name as I comprehended what he’d told me. He’d go to college if I would stay healthy. Robbie thought I had more than six months of health left. He thought I had years because that’s how long he would take to get his degree.
“Maybe if we can keep you at this stage, or even gain some ground with the right food and exercise, that will be enough time for the next pharmaceutical breakthrough.”
I scuffed my toe in the sand. Water bubbled to the surface. I looked up at Ash. “That means no marshmallow baby chicks for Easter.”
“Or rabbits, eggs, and cocktails.”
“Chocolate is good for me.”
“No hope for that either.” He turned me around and pointed toward the pier. I looked into the sun, and the clouds that crested the horizon. Then I turned and started walking toward that sunset. Nuland had been right in his belief that the appreciation of beauty was an evolutionary adaption to coping with the chaos inside us and around us. Beauty could make chaos invisible.
I’d been wrong about Ellen if that were true. Maybe she’d sought out the spiritual leader in Mexico, not because he could heal, but because she instinctively felt the beauty of the area could heal. That’s why Classy and Sandy were going back.
Perhaps that’s what religion did as well—provided order through the beauty of cathedrals and churches. Man-made beauty as well as natural beauty resisted the contamination of disorder. Churches imposed order on chaos. No wonder people felt compelled to pray when they entered; they couldn’t help their brain’s response.
“Today’s goal is to walk to that pier, Dr. Sommers.” Ash pointed down the beach. The water’s ebb went into flow and ebbed again, leaving behind firm, hard-packed sand. As the seconds passed, those grains of sand beneath my feet shifted as the water drained, but they also held together just long enough that I could walk into another second. That’s how normal people built seconds into miles. And that was the path I’d take, always finding the firm ground of reason and insight inside my mind, until I couldn’t think any longer.
As long as the sand held, I could keep going.
The promise of rain didn’t stop me from walking the beach the next day. Parking the car in Oak Island’s designated public access parking area, I rummaged around in the back seat of the Volvo, found an old cap someone had given me, and tugged it over my hair. My fleece jacket would keep the rain off me for a while, but that didn’t matter. The day was still warm, for January.
Mine was the lone car in the lot. Winter brought the locals out to play, but they had enough sense to stay in out of the rain, as my father used to say. Inside my head, he smiled and scooped away a handful of dead brain cells to uncover healthy ones. It was a useful figment of my imagination, that image of my dad. He used to shovel corn out of bins that way, the big silver shovel loaded with golden grain. Dr. McCloud called it brain atrophy. Dad didn’t care what those cells were called. He wanted the mess gone.
But I hadn’t come to think about that. I let Dad do the shoveling, and I started walking. That’s the way insight worked . . . when it chose to do so. The beach stretched on and on, my eyes tracking grains of sand until the grains became a pencil whose sharp dark point punctuated the horizon.
I found the edge of the hard-packed sand and lengthened my stride. The ocean, sand, and sky blended into a monochromatic print of overcast and gray. Beautiful, surreal like my thoughts and, when the rain started to fall in fits and starts, I tucked my hands into my jacket and kept walking. Then wondered why and held my palms up to the sporadic splashes of cold so that I could feel the sensation of wet.
This wasn’t the gentle, warm rain of September that fell like soft drops of petals against my skin. These occasional drops had the edge of ice, but they felt warm. The rain and the mist damped sound, and I walked further, deeper into the zone of silence and wet.
Blue-gray rippled against the edge of gray, and slashes of white crested and then disappeared. Maybe . . . and I stood, looking out over the endless, vast grayness and wondered what it w
ould be like to keep walking . . . that way. But I’d told Ash I wouldn’t, and the thought of suicide never had a chance anyway. My father caught its tail and whipped it down onto the hard bone of my skull. I’d seen him kill a snake that way once, grabbing the tail, whipping it high before it could coil and strike, then cracking the body like a whip onto concrete.
I kept walking on the hard-packed sand.
More raindrops fell. Soft splashes that my hat absorbed. When it got wet enough, I thought, when it got wet enough.
A brief look at the sky. Nothing to indicate more rain would fall and nothing to indicate that the rain would stop. Only gray all around me, but without thunder, lightning, or wind. Just nothing except for the movement I created, the footsteps I left in the sand, the breeze my mass displaced as I met and overcame the resistance against the gray that enclosed me.
Energy here, I thought, energy I could use to sweep FTD aside.
After two miles, I stopped, turned around, and started the long walk back to the car. The ocean had already erased some of my steps, and the hard-packed sand was higher on the beach. The tide must be coming in, as tides always did, but nothing seemed to move but me. The rain fell a little faster. No longer a gentle mist, the drops had mass and heft.
Now?
I stood for a minute, my head high, my broad brimmed hat level, my heartbeat loud in the silence. Then, I tipped my head forward and the water fell from the brim of my hat as a waterfall spills over a cliff.
From behind the waterfall, I stared at the world. Now I knew how the disease would kill me.
I walked on in the light rain.
Susan was home when I got there. She was the only one left since Lynn had moved out to be with Bill. I tried not to think about that because I didn’t know how I felt about it. The old me would have been outraged, but the new me, whose moral limits were being erased didn’t seem to care.
“Did your car break down?” Susan grabbed a towel and threw it at me, then grabbed another and wiped the floor where I stood dripping. The shivering had started on the way home, and I couldn’t stop.
I struggled to answer her but couldn’t because my teeth were chattering.
“Shower,” Susan said. “Now.” And she helped me into the shower stall, clothes and all. The warm water cascaded down, washing away the rain and the cold. I gave her my shoes, then closed the shower door and struggled out of my clothes, throwing them, dripping, one item after another over the shower door. Susan was there to gather them up and to leave my pajamas, robe, and slippers behind. Steam started to rise around me, and I leaned against the shower wall and let the warm water stream over me.
“Maybe I overdid the exercise thing this morning.”
I heard a muttered “Ya think?” and then Susan left. “I’ll make some hot tea for you,” she said as she closed the door.
Bundled up and warm, a towel still around my hair, I joined her by the fireplace in the living room. The warmth felt so good. The tea Susan had waiting for me warmed up my insides.
“What’s wrong, Dart?”
She knew me well, my friend did. “I got caught out in the rain while walking the beach over on Oak Island. Didn’t seem so cold at the time.”
“You do that when you have tough decisions to make.” She stared at the fire then turned back to me and smiled. “What did you decide?”
“I’m not going to go to Mexico.”
She straightened at that and put her wine glass down on the coffee table. “I didn’t know you were considering it.” Then she sat back, one arm outstretched along the back of the couch, the other in her lap, her legs crossed, relaxed, but her torso faced me squarely, and the time had come. I told her about the visit with McCloud, his suspicions, my own observations, and what I would tell Ash regarding our relationship.
“You should take some of that money Emory left you and travel, Dart. See the world, do what you’ve kept postponing all these years. Now’s the time.”
“Robbie’s going to need that money for college. He told me he would go when I was home over Christmas.”
Susan smiled at that, then grew earnest in her pleas for me to put aside my research and do what I enjoyed doing.
“I thought about that on the beach.” I unwrapped the towel from my hair and ran my fingers through it. It would curl in the warmth from the fireplace, but I found myself unconcerned. What I looked like didn’t seem so important now that I knew I had FTD.
“If who I am is what defines me, then I have to continue my research into poverty.”
“Dart, honey, you don’t stand a chance of solving the issue. There’s not enough time, and why waste what you have struggling against something that’s inevitable?”
“Death is inevitable, but we continue to live.”
“That’s different.”
“We’re all dying, Susan.”
“Yes, I know, I know, but enjoy yourself in the time you have left.”
My hair curled against my fingers, and I relaxed for the first time that day. “I don’t enjoy teaching the MOOC.”
“Odd, it’s brought you so much recognition.” Susan relaxed as well.
“I’ll let Hendrix take over once she’s back from sabbatical. She’s always wanted to be where I was standing.”
“Her office is cleaned out, Dart. She’s not coming back.” Surprise that I didn’t know lingered in Susan’s expression. “Her vita isn’t on the website anymore.” Susan thought for a minute. “She wasn’t happy here. She hadn’t been happy for a long time.”
You might have been wrong about Hendrix.
You’re not wrong. That voice I trusted. If Hendrix had believed herself to be wronged, then she would have fought and won. Instead, she had packed up her office and left the university without saying goodbye. Maybe she’d been relieved not to have to live a lie any longer. Or maybe they’d paid her off. Or maybe she’d had enough of university life and resigned. Or maybe someone had gotten sick, or maybe she was sick, or maybe she read my email and left. Whatever had happened to her, I hoped she lived what remained of her life with integrity. And I found it ironic that that might not be an option for me. Maybe Hendrix had FTD as well.
“You should let Lea have the MOOC,” Susan said.
“Great minds think alike.” I felt warm for the first time since I’d gotten home. “I’ll let her teach next semester. She’ll have my notes from this semester and she can show my lecture tapes from this semester, and if I put in an occasional appearance, Ash won’t be any wiser.”
Both of us were pleased with that solution, and I savored the moment of shared insight that had solved that problem. Those would become rarer as the FTD progressed.
“If I’m lucky, Susan, my brain will still work on the theoretical. I’m going to lose my inhibition and self-control, but if people understand and treat me as if I have a disability, I think I can keep working. I’ll just have to have an aide at work and a caretaker here at home.”
“That would be me,” Susan said. “I can shop for us . . . and the first order of business is a restraining order on wine. Once I drink up what’s in the house, that’s it.”
“I’m going to draw up a trust and if there’s anything left in my bank account when I die, that will go to you. Is that fair?”
“Depends on what you have in your account. Has to be at least a dollar left.”
“In other words, you’re not worried about it.”
“I know that I can’t take care of you when you need nursing home care, Dart, but I think I can keep up with you for a while yet. I’ll make sure you’re at Salzburg. That’s critical, isn’t it?”
“Yes, the Salzburg presentation will help others carry on the work. I’m determined to follow what Ash and I decided upon last night: a Mediterranean diet, exercise every day, and keep my brain engaged in the work.”
Inside my head, my dad lifted another shovel full of dripping, decaying brain cells. This time the shovel scraped against bone.
“But if FTD makes that imposs
ible, you’ll have to help me.”
“That’s why you touch my hair.”
I felt a momentary bit of shame. That was good to still feel shame.
“I can’t help that.” And that was bad.
“Even now you have fascinating patterns there, and my fingertips itch, they actually itch, to feel your hair.”
“Are we going to become sexual partners?”
So lucky to have her understand. She’d laughed off the taboo, the anger that black people, herself included, felt when white people reached out to touch their hair as if they were exotic and different. “Don’t laugh about this. It’s possible. A lot of behavior variant FTD patients become sexually aggressive, but I don’t know if I have bvFTD. It may be something else. But if it’s any consolation, I’ve never found women attractive—although I like how they dress up in skirts that swish and high heels that click.”
“Do you miss her?” Susan asked, and at first, I thought she meant Ellen but since she refused to look at me, her eyes on the flames while her fingers traced the rim of her tea cup, I knew she was talking about Lynn.
“I don’t understand how Lynn could do that, and I don’t understand why you aren’t as angry as I am. Ellen was your favorite cousin. Doesn’t it outrage you that her husband buried his wife one day and climbed into bed with Lynn the next?”
“You miss her.”
“She’s with him in Mexico celebrating Ellen’s life. What a crock of sauerkraut that is,” Susan said, getting up and leaving me alone in the living room.
After she left, I stayed by the fire, petting Brown Bear. Bill, Sandy, and Classy were down in Mexico for the winter, and Lynn had gone with them. Susan had a point. Why wasn’t I outraged about what Bill had done?
They hadn’t meant to harm Ellen or Susan or me, they said, but love found people in the strangest ways, and they, Bill and Lynn—I still couldn’t believe it—were in love. The beauty of their romance tamed the chaos that had brought them together. That’s what they believed. Nuland would have approved.
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