“Well, in a manner of speaking, I guess I do,” he said, cocking his head and grinning.
“Then it must not be fatal because you’re looking way too pleased with yourself,” I said, setting down my fork and sitting up straight, preparing myself for the worst. “So are you going to tell me what it is or do I have to go get my medical dictionary?”
“No, I’ll tell you.” He leaned back in his chair and gave me an extremely smug look. “Ephemera is a category on eBay.”
I gazed at him, wondering if perhaps he’d finally gone round the bend. “So?”
And then he explained further, how he’d been perusing the category since we’d gotten our first computer and even longer, actually, thanks to one of his conductor friend’s new-fangled cell phone with Internet access, and the searches he’d done and the alerts he’d set up had finally paid off.
“Ephemera, to eBay, is old, historic paper goods,” he said, handing me a flat box wrapped in paper printed with orchids. “Happy birthday, my love.” He smiled. “Well, aren’t you going to open it?”
I did, hands trembling because I knew it couldn’t be it, it just couldn’t be, and so I wouldn’t even get my hopes up, wouldn’t even let the thought cross my mind. Shaking, I lifted the box lid and parted the crisp white tissue paper…
And it was.
It was.
For the first time in almost fifty years, I got to see my mother’s smiling face.
“So I guess you’re not going to stick me in some old-folks home and run off with a spry, sixty-year-old whippersnapper now,” he joked, blotting his eyes while I sat there, clutching the faded, rough-edged Ciro’s cardboard souvenir photo frame, and cried.
“No, I guess I’m not,” I said, burying my face in my napkin.
“I did good then?” he said.
“Yes,” I whispered. “You did good.”
We made love that night for the first time since his heart attack, gently and tenderly, in no hurry and with much care, and afterward he told me the photo had been part of a small lot of old papers listed as Doctor’s Estate Scandal 1950s Memorabilia, so he guessed that maybe Nurse, in the course of her cleaning, had found the photo and bundled it into my things. He said he’d found something curious: a piece of correspondence on state-home letterhead regarding the doctor’s pro bono surgeries.
“Did you know he did operations for the orphanage?” he asked, running a lazy finger up and down my forearm.
“No,” I said and tried to remember why the thought disturbed me, but it was out of reach now, and so I let it go and curled my fingers in his silky salt-and-pepper chest hair and fell asleep with his arms around me.
Peter had a second heart attack two years later, and by then I had long suspected that there was something seriously wrong with me. Serious enough to make my boss at the diner ask me to quit so he wouldn’t have to fire me, but then we compromised and he laid me off so I could at least collect unemployment for a while.
I had developed uncontrollable and sporadic tremors, my body moving on its own, and my balance was awful. I was losing track of things, paying bills late, confusing days, months, and even years, forgetting to feed the cats, forgetting I had food on the stove, losing my keys, putting incorrect orders in at work and having to take them back over and over, and quite often, losing my way driving home.
It made me furious, made me beat my fists down on the legs that would refuse to move when I wanted to walk and yet would twitch, pedal, and jerk like crazy all night long. My muscles locked up and some mornings I was brought to tears just trying to roll over to get out of bed. I began adjusting our lifestyle, bought satin sheets because I could slide easier and elastic waist pants and pullover sweatshirts so I wouldn’t have to call Peter in and ask him to button me up, used a cane, and erupted in anger the one and only time Peter tried to get me to go to the doctor’s.
“No! I never want to see another doctor again for as long as I live.”
“Louise—” he began.
“Don’t tell me I’m being unreasonable,” I said, crying because my hand was moving again and I couldn’t make it stop. I wanted a sip of orange juice but couldn’t make myself reach for the cup and, even if I did somehow manage to get ahold of it, would splash the juice right out.
“I’m just trying to help,” he said quietly, watching me with a compassion that was both embarrassing and oh, so welcome.
The thing was, he couldn’t help because I’d already researched my symptoms, and come up with a short, terrifying list of incurable diseases that would spin round and round in my mind every day and never let go.
So I delved feverishly into home remedies, pored over organic cookbooks and homeopathic books and websites, found our old travel mugs and used them instead of normal cups so I could drink without spilling things, graduated to using a walker at home, and stopped driving, enabling us to sell my car and put the money toward what seemed like an ever-rising flood of bills.
And I began to think about the end.
Obsess about it, actually, remembering the Boehms’ choosing to die of morphine overdoses rather than endure the continuing physical and neurological breakdowns from untreated syphilis, and staring at my parents’ photo, thinking of how it would have felt to die like my father had at twenty-one, blown up by an enemy’s grenade, or like my mother, growing weaker and sicker every day until without warning she had just…expired.
And I wondered…did she really have no warning, had her body really not been telling her, in its own silent way, with its breathlessness and weakness and pounding heart and constant sickness, that it was floundering? Had she known the truth and just decided not to acknowledge it, choosing instead to die with her secrets and leave her daughter shocked and alone, with no one to turn to for anything, not comfort or belonging or even answers?
Had my mother deliberately chosen to ignore the dark cloud over her head, knowing my birth certificate would be discovered, knowing I would be devastated and would have anger and disappointment and so many questions, and just turned away from it all, perhaps unable to bear the way I would look at her—not always, but at that moment, full of betrayal and, yes, maybe even brimming with the righteous disgust of the young who know they know everything—and just been too weak and weary to deal with it?
And now I understood it but at the same time I still hated it, hated the lifelong frustration of questions without answers, hated knowing that when I died and Peter died and people we loved came to clean out our home, they, too, would find puzzling documents, that they, too, would try and match up dates and immigration records and make sense of a folder full of journalist reports about mandatory sterilization at state orphanages and the rampages of syphilis and tuberculosis and an old archived obituary of a woman named Evelyn Bell with an angry CLOSSON penciled in red after it and a slimmer folder of horrible, grainy black-and-white photos of the dead and dying during Holland’s Hunger Winter and a recipe for rice pie, and would anyone anywhere be able to guess the truth or would they just disregard it because we were gone now and who cared.
Or even worse, would they just make up convenient truths to suit themselves, painting us as poor, uneducated liars, a sterilized bastard orphan and a savage immigrant who had run off with a teenager.
The thought was unbearable, leaving questions without answers, leaving loved ones to sort between the comforting lies and the shocking truth, so I sat down at the computer during the moments when my shaking wasn’t too dreadful and began to write.
“I think that’s good for today, don’t you?” I said, switching off the CD and avoiding Gran’s gaze because I didn’t like where the book was going now, not at all, and wasn’t it bad enough that she was stuck in the middle of it without having to hear about it in a book?
Or was I wrong? Was it better to read books about people who were going through the same thing you were, just so you knew you weren’t alone?
I asked her, let the helpless question fall and lay there without an answer, watched her twi
st and writhe and drool, she had started to drool now and needed changing every day, but I still couldn’t do it and when I told my mother, crying, she said quietly, “With all that poor Helen is going through, I don’t think the indignity of being changed is the worst of it,” but the next time I went over, I found my mother there and Gran was freshly washed and changed and wearing a clean sweat suit and her hair was brushed and her ChapStick on. I started crying because I loved my mother for helping me but I also saw all the things I hadn’t done and I realized how much I still didn’t know about taking care of someone.
Worse, my mother took me aside and in a shaky voice said, “It’s no one’s fault, Hanna, but I found two spots that look like they’re going to be bedsores if we’re not careful, and if she gets those, she’s going to have to go back into the hospital because those are open wounds and—”
“No! She hates doctors ever since the Boehms’,” I blurted, and then had a weird, woozy moment of trying to remember if it was Gran or Louise on tape who we were talking about.
“Who are the Boehms’?” my mother said, frowning.
“No one,” I said, shaking my head and taking a deep breath, because that was not good, blurring the line between fantasy and reality, and I heard Seth’s voice say, You don’t live in a novel, Hanna! and for a minute there, I felt like I did.
The question is not, “Can they reason?” nor, “Can they talk?” but rather, “Can they suffer?”
—Jeremy Bentham
How It Ends
Parkinson’s disease has no cure and no mercy.
Over time the disease would steal my ability to swallow, to control my body, its functions and movements, to walk, turn my head, change expression, to think, to remember, to laugh and cry, and most heart wrenchingly, to talk.
It would shut down my bowels, host Alzheimer’s, and usher in depression. It would destroy my body and my mind, leaving me nothing but pain, terror, and a strong, beating heart trapped in a useless, bed-sore-ridden shell. It could be stalled awhile with drugs, but it could never be stopped. Research money was being divvied up and thrown around, but not enough, and not enough at Parkinson’s.
In the meantime, as if to prove its power, the disease stole my balance one fall afternoon and sent me reeling down the back steps. I couldn’t get up, couldn’t do anything but lie there thrashing and gurgling, so Peter had no choice but to call the ambulance, had no choice but to place me in the hands of those I feared most.
There’s a lot I’m not saying about the sheer helplessness and frustration, the mortification of having to be wiped and diapered like an infant, of being unable to control yourself, of having to lay there in the hospital and have people touch you and move you and take your blood and give you pills and speak to you with the loud, perky, professional cheer of the whole and the healthy who know they will never end up like you, simply because these things only happen to somebody else.
The medication helped, giving me on and off times, welcome windows where I could rise and dress myself, where I could get the spoon to my mouth and if the food was liquid enough, swallow it without choking. It gave me moments when I could talk, one word, maybe two or three, delivered seconds, sometimes minutes, apart and always in a nearly unintelligible mumble. But still, it was a word and I’d spoken it, not that anyone but Peter and a few others ever had the patience to wait around long enough to hear what it was.
The medication was expensive and wouldn’t halt the slow, miserable disintegration, but I took it anyway. I took it and suffered the side effects because the doctor wanted me to and I wanted more than anything to get out of that hospital and go home.
So I took it and I did go home, and just the sight of our house rising through the trees down past the bend in the road made me weep.
When Peter helped me out of the car and showed me the wheelchair ramp he and the neighbor had built alongside the steps, when the cats crept out and the sun warmed my face and the scent of the freshly mowed clover hit me, I knew that no matter what, I would never willingly leave this place again.
I had lived as I’d wanted to here, and I would die the same way.
I’m afraid of this book.
I want a happy ending.
I want the book to finish and me and Gran to look at each other all pleased and, yeah, maybe tearful because a good book always makes you cry, and I want to hear her say something, say one word, and I don’t care what it is, but I want to hear one word, just one.
Just one.
My mother tried to keep Gran clean and out of the hospital but she said it was a losing battle. The house was a mess and the strain of trying to do it all was getting so bad that she was afraid Grandpa was going to have another heart attack.
“And what if that happened?” she said one night at dinner, looking at my father and me with fear. “If Lon has a heart attack, Helen can’t even get to the phone! He could die laying there waiting for help!”
“What about one of those medical alarms, you know, the ‘I’ve fallen and I can’t get up!’ thing?” my father said, shoveling up a forkful of peas. “I’m working again and we could have the bill sent right to us.”
My mother looked at him, eyes swimming with tears, and said, “That is exactly why I love you, you know that?” and then she got up and went around and gave him a bear hug that knocked his glass of soda into his plate and swamped his peas and stained his mashed potatoes purple, but he just smiled and hugged her back and didn’t look like he cared at all.
I didn’t play the book on Thanksgiving, first because it didn’t seem like anything to be thankful for, and second because my parents were there with me. We brought food over for Grandpa and pureed some sweet potatoes and stuff for Gran, but she was really, really bad and it was a terrible day because we all knew that sooner or later one of us was going to have to tell him that she needed to be put somewhere, that he couldn’t give her what she needed anymore no matter how hard he tried, and that caring for her was killing him and we could see it happening.
The worst part was that no one brought it up because we were all trying to be at least a little cheerful, but right after saying our Thanksgiving blessing he looked up and said, You know her heart is very strong, she has no heart problems at all, and that was kind of scary because all I could think was, Oh my God, what if he dies of a heart attack because he’s got the weak heart and leaves her here? Are we going to have to put her in a home or will someone just come and get her and commit her without anyone’s permission at all?
My mother came back with me Friday and Saturday, so while she changed the sheets on the bed, cleaned the bathroom and washed Gran, I loaded up the wagon full of deer food and made the slow U around the back of the quiet property, caught in a thick tension headache, caught in a limbo with the world, feeling that the last peaceful day was coming tomorrow, before deer season opened at sunrise on Monday, knowing the stalemate with Seth couldn’t go on forever, that we had all these words to say to each other and neither of us would say them, that we were silent not because we couldn’t talk but because we wouldn’t, and sick at what a waste it was.
I went back to Gran’s on Sunday by myself, not because of the mandatory community service but because they needed me. And while I was busy filling Gran’s sippy cup with water, I glanced up and saw a little faded red plastic tomato ornament hanging on a suction hook on the window. I’d made it for her back in sixth grade with a stained-glass paint kit, and the sight of it twisted hard inside me, ripped something loose, and I forgot about the sippy cup, forgot about everything but Gran and ran back into the living room where she was alone, slumped and shaking in the chair.
“Gran,” I said, dropping to my knees in front of her and grabbing onto one of her flyaway hands. “Don’t leave me, okay? Please?”
Her hand struggled in mine but I wouldn’t release it.
“Stay, Gran,” I said and I wanted it to be an order but it came out a plea. “I need you. I do.” I didn’t even try to stop the tears. “Who am I goin
g to talk to if you go? You said you would never leave me, Gran. You said so. Please stay.”
I wanted her to look at me, to smile and pet my hair like she used to when I was little, but there was nothing. She gave me nothing, and finally, still crying, I let go of her hand, wiped my face on my sleeve, got up, and hit play on the CD player.
How It Ends
I don’t know how you say good-bye to whom and what you love. I don’t know a painless way to do it, don’t know the words to capture a heart so full and a longing so intense.
I don’t know how to ask you to understand that sometimes the most loving lies are necessary to protect the innocent.
I started writing this because I love you, and it was time to give you truthful answers to all of those impossible questions you once asked. There will be more questions coming, you know—there always are—and by that time I pray you will realize that a happy ending is not the same as happily ever after and that fairy tales are fiction, but love, true love that is trustworthy, steadfast, and reliable, is not.
True love is real, and I have loved you since that first day, the best way I knew how.
I hope someday you can forgive me.
Peter found me some home day-care women for a while, volunteers from churches mostly who swept in with determined good cheer and, occasionally, teeth-grinding platitudes about God’s will and never being given more than we could bear, cruelest when said as they changed my soiled diaper or patted my back as I choked on a teaspoon of applesauce.
And while I hated having strangers see me like this, wandering through my home looking at my things or rummaging through my bureau drawers, I was also desperately grateful because we could never have afforded to pay them and caring for me was an exhausting job.
I worried about the strain on Peter’s heart.