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After Terry and Jimmy went off to college, they stopped going to church and so did I. By then, Lily had gotten quite involved in the youth group and people from church were giving her rides to teen Masses, prayer meetings and potlucks and surprising her with holy cards and saints’ medals on feast days. After high school, she got involved in the young adult ministry. People in that group, which was for singles, had a high likelihood of marrying each other. Lily is one of the longest- standing members. I know she has always dreamed of getting married, and I still don’t think it’s out of the question. She has had a few boyfriends who have Down syndrome. I can’t tell you how many times she has asked me “Mama, do you think I ever find a husband?” Now the standard answer my mother gave me when I asked that question had been passed down in our family for a number of generations – from mother to daughter.
“Bev,” my Mom said, rubbing a soapy sponge over the rose- colored Formica, “My Mama always used to say „There ain’t a pot so crooked that there ain’t a lid somewhere to fit it.’”
Now this was somehow meant to instill a sense of hope in a young woman. But I took it as confirmation that I am a crooked pot, and indeed during my adolescence and even into my 20’s I did seek out crooked lids. None of them fit, despite the fact that I tried on more than my share. So when Lily came to me wondering if she was worthy to be loved, I decided to break the chain of generations of trashed self esteems and put the crooked pot theory to rest right then and there.
“If some man is lucky enough,” I said. A huge smile crept across her face and she squeezed me hard around my waist. That is one of Lily’s greatest faults, if you can call it that. She hugs very hard. Terry and Jimmy call her The Mighty Python. The nurses here have all fallen victim to her embrace at one time or another. Maria gets a Lily hug every time she’s on shift. That would be today, but Lily hasn’t arrived yet.
“What are you eating today, Bev?” Maria asks, picking up my menu card. “Oh, you didn’t fill it in yet. Do you want some help?”
“Oh, I didn’t, Maria? I’m sorry.”
“That’s OK.” She pulled a pen out of her pocket and bent over my shoulder with the card, pointing the pen at my choices. “Do you want the rosemary chicken or the Salisbury steak?”
“Mashed potatoes or rice?”
“Rice sounds good.” Actually nothing sounds good, but rice does not sound awful.
“What kind of dressing on your salad?” Maria asks.
“Ranch on the side, please.”
I watch her put “on the side” in parentheses. Her handwriting looks like the font they used to spell “Princess” on all the young girls’ T-shirts, lunch boxes and notebooks when Lily was little – sparkly pink accessories embellished with a rhinestone tiara over the word. It is appropriate handwriting for Maria. She looks like a movie character who has not yet discovered she is royalty. She wears no make-up, that I can tell, except maybe a touch of lipstick. I can never decide if that lovely coral is the natural color of her lips or not. It is obvious someone has invested a great deal of time in her. She seems well-cared for and meticulously taught – manners, compassion, penmanship. I picture her mother spending Saturday afternoons with her, copying, “the quick brown fox jumps over the lazy dog,” onto handwriting paper. I used to have beautiful penmanship when I was young, thanks to my mother, who had obsessive compulsive tendencies in almost all the right areas.
Before anything ever began to shake, I noticed my handwriting begin to go. The words were all cramped together and smaller than usual. Then one day, soon after that, I noticed my garage didn’t smell like a garage any more. The smell of a garage is so identifiable, it transports me instantly to my grandma’s house and makes me thirsty. Grandma used to let us go get Sprite or root beer out of the extra refrigerator in her garage and she would keep two red, ride-on tractors out there for us to use when we came to visit. The scent of garage is hard to describe, but maybe something like a delicious combination of rubber, slightly damp plywood, garden dirt and dust. I wondered what had changed in my own garage to rid it of that lovely link to childhood. Had the humidity dropped? Had I left the garage door open too long at some point, so that the fresh air had chased out the mustiness? A short time later, I realized that I couldn’t smell the faint gas smell I used to when I first turned on my stove. And the Velvet Tuberose lotion that I once bought strictly because I loved the smell didn’t have much of a fragrance any more. I also began to lose my appetite. Everything tasted like salty or sweet cardboard. I assumed I was suffering a bout of depression. Then, one day, on my 63rd birthday, I googled loss of smell and bad handwriting and was mortified by the possible diagnosis. These were the early symptoms of Parkinson’s. Since I didn’t have any of the shaking yet, I decided to try to put it out of my mind. Several months went by and one day my right pinky began to shake. I knew that was the beginning of the end. Not that I would die any time soon from the disease, but my life was ending just the same. I know people talk about different phases in their lives as chapters in a book. But this was not the end of a chapter. This was a book burning.
“Alright, Bev,” Maria says, putting the menu card in her pocket, along with her pen. “You’re all set. I’ll get this order in. Would you like some clean sheets today?”
I like how Maria treats you like an equal. Some nurses pour on the saccharin in their zeal to show you how much they care, using a tone normally reserved for small children or companion animals or speaking to you in first-person plural: “How are we doing today?” I understand how easy it is to slip into that. I think maybe I have done it myself to fellow residents. Agnes and I are probably among the sharpest ones here. It would be nice if this disease would continue to spare my intellect. It often does. On the other hand, losing my mental capacity doesn’t scare me as much as it should. I guess I’ve been around Lily long enough to understand that intelligence is not the key to happiness. In fact, it seems to me, it can be an obstacle. I remember one Christmas long ago that was particularly difficult. Jack had just moved out and we were neither in the money nor the mood to provide the kind of Christmas they had grown accustomed to. Terry and Jimmy were really down. The only time they said anything to me was when they could find a way to use me as an emotional dart board. “This turkey’s a lot drier than last year.” “Maybe next year we can get some good presents.” “Lindsay is lucky she gets to spend Christmas with her Mom and Dad.” “Can I go over to Zachary’s house? They’re playing football in the back yard all day.” There they sat, slumped on the couch, feet propped on the coffee table, heads so heavy with disgust, they could barely hold them up. Meanwhile, Lily had discovered a treasure. A feather had poked its way through one of the throw pillows on the couch and Lily had managed to pull it out. She was laughing hysterically, blowing it into the air and trying to catch it as it came floating back down. Lily loved Jack as much as anybody. Maybe even more. But a feather had entered into her world at this moment in time, and feathers are funny things, whether you’re living in a two-parent household or in a broken home with your deceased mother’s sister.
There were moments like that which were so endearing that even a hard selfish old clod like me couldn’t help but feel this sticky heaviness in my chest that I came to understand as attachment. One time I took the kids to the zoo and on the way out, I told them they could each choose something from the enormous toy shop. The older two picked some cheap noisy plastic animals with candy inside. Lily looked at everything in the store very carefully and decided on a new set of coloring pencils. She was only six. Every once in a while, you’d get a glimpse into her heart like that. You needed that glimpse because, since she couldn’t talk for so many years, many things about her were a mystery. Like why she found it so harrowing to step off a curb, but she begged to go on the roller coaster at LegoLand seven times and still hadn’t had her fill.
Although it didn’t have the name Parkinson’s until the early 1800’s, symptoms of this hell I’m living were described in ancient India as early as 5000 B.C. It wasn’t until after “An Essay on the Shaking Palsy” was published in 1817 that the disease was officially named after the author of that article, a London physician named James Parkinson, member of the Royal College of Surgeons. I rather like the sound of that. I mean, if you were going to have an organ removed, wouldn’t you want one of those guys to do it? Hey, if they’re good enough for the queen’s gall bladder. Soon after I was diagnosed, I looked up Dr. Parkinson’s essay online. Probably wasn’t a good idea. Every once in a while, for reasons I cannot explain, I turn the audio on my Kindle and listen to it again. The description is at the same time poetic and horrific.
“The unhappy sufferer considers it as an evil, from the domination of which he has no prospect of escape.”
More than 200 years later and there’s still no prospect. The royal surgeon goes on to describe the various stages of agony, which I have to say, from my experience, are highly accurate.
“The propensity to lean forward becomes invincible, and the patient is thereby forced to step on the toes and fore part of the feet, whilst the upper part of the body is thrown so far forward as to render it difficult to avoid falling on the face. In this stage, the sleep becomes much disturbed. The tremulous motion of the limbs occurs during sleep, and augment until they awaken the patient, and frequently with much agitation and alarm.”
I often have to trick myself to sleep. One of my techniques is to close my eyes and visualize an image of Monet’s water lilies, shrunk to the size of a postage stamp. The painting is the one that has the clouds reflected in the water where the lily pads grow. One of Lily’s therapists gave her a poster print of it when she had heart surgery – I assume because of her name – and it hung in her bedroom until the day we moved out. I’m not exactly sure why it works as a sleep aid, but I guess the energy it takes for my brain to project an image on my eyelids exhausts me. To be successful, I have to keep the image on, even though it wants to flash on and off. Often, the picture floats through the past, guiding my mind to a place I’ve been long ago. Last night it floated through the aisles of the Asian supermarket, where Jack and I used to shop after taking a Thai cooking course. Past the pig snouts, cow tongues, processed squid, lemon grass standing tall in black buckets of water, Thai eggplant, dusty cans of coconut milk, bamboo rice steamers and colorful plastic toy dragons that play It’s a Small World After All. Sometimes the postage stamp floats through the future, leading me through everything I will be doing the next day. Why my brain wants to go through five or six dress rehearsals for simple tasks like brushing my teeth and buttoning my shirt I will never understand. Some people say they get to sleep by thinking of nothingness – just black space. But I was never skilled at making my mind do that. Before I came up with the postage stamp trick, I would lay awake at night for three hours or more. And that was on non-chattering nights.
My jaw tremor acts up when my mouth is at rest, so talking and chewing gum provide the only relief. Can’t do that in my sleep though. The chattering seems so much faster than what might happen to your jaw if you’re cold or anxious – like about 200 clinks per minute. It’s near impossible to sleep through all that noise inside your own head. Then, every once in a while my jaw will snap shut so hard, I don’t know why my teeth haven’t shattered right out of my head. Wouldn’t surprise me if they did, considering how bad they’ve gotten. It’s been a long time since I could brush them well myself.
Lily has done the best she can to brush my teeth for me, but she doesn’t have the world’s best coordination either. Some of the nurses do a nice job. Others seem keen to the fact that they’ll collect the same paycheck whether I have tartar build-up or not.
“The submission of the limbs to the directions of the will can hardly ever be obtained in the performance of the most ordinary offices of life. The fingers cannot be disposed of in the proposed directions, and applied with certainty to any proposed point …. Whilst at meals the fork not being duly directed frequently fails to raise the morsel from the plate: which, when seized, is with much difficulty conveyed to the mouth. The power of conveying the food to the mouth is at length so much impeded that he is obliged to consent to be fed by others.”
A well-behaved tongue is a very easy thing to take for granted. Mine might as well not even be a part of me, for I have no control over it. I’m not talking metaphorically now, because you know I’ve never been a diplomat. I’m talking anatomically. There are some days when it’s like having a trembling fish in my mouth. It ceases to perform any of its intended tasks, like pushing food to the back of my mouth and helping me swallow. By the time Lily is through feeding me, she has gone through five or six paper napkins, trying to keep my chin clean. I try to order foods from the menu that aren’t too messy. I can’t taste anything anyway, so I might as well skip the chocolate cake. I never thought there would come a day when not even a seven- layer slice of heaven would give me pleasure.
When Lily was little, I never gave her a choice of ice cream. It was vanilla or nothing because I knew it was going to be drooled out onto her clothes, and vanilla doesn’t stain. Eventually, she became a skilled enough communicator to ask for chocolate. I would lie and tell her there was none left after everyone else got some. She’d get mad, but I’d set the bowl of vanilla in front of her and after a brief protest, during which she would turn her entire body around in her chair and refuse to look at it, she relented and picked up the spoon. If I had it to do over again, I’d invest in a bottle of Spray & Wash.
I know I should probably feel embarrassed that Lily has to wipe the drool off my face, but I wiped hers so often, I guess I figure its pay-back time. A variety of different business establishments have this uncontrollable desire to give children lollipops – the hair stylist, the banker, the doctor. I used to dread those places. Lily could liquefy an entire lollipop in her mouth without swallowing a drop of it. The goo would drip down her chin, mingle wildly with her shoulder-length hair and I would end up with a miniature version of the bearded lady and a mess so involved that it practically required a haz-mat crew to clean up. Because cleaning up afterward was such an intensive process, I used to try to hide the lollipops from the kids. It was easy enough at the bank drive-through because I would just take them from the tube that is sucked in and out of the teller window and sneak them into my purse. Then I’d eat them after everyone went to bed. One time I wasn’t covert enough and Terry caught a glimpse of three suckers being shoved into my purse.
“Auntie, can I have the yellow one?” she blurted out. I shot her a look. “Shhh.”
“What?” she whined. “Why can’t we have one?”
I sighed heavily and passed three of them back. “Give one to everyone,” I said.
Lily kicked her feet and said, “yay!” when Terry handed her the red one. Jimmy and Terry both hated cherry-flavored candy. Terry used to say red candy gave her a sore throat, but I think she was just associating it with cold medicine. Jimmy took the green one and I waited for a protest about why Terry got to choose first, but none came.
Three minutes later, I looked in the rear-view mirror and Lily’s chin looked like a candy apple. Knowing it would be ridiculous and bordering on cruel to get angry at a child with low facial muscle tone for doing something as benign as enjoying a sweet, I hurled my frustrations at Terry.
“Look at her,” I said talking to the rear view mirror. “Will you just look at your sister, Terry. You’re going to be cleaning her up. I’m tired of it.”
“OK, Auntie,” she said humbly. “I’ll clean her up as soon as we get home.”
“You’re the one who had to have the lollipops,” I continued, trying to justify my rant. “So you’re the one who’s going to clean up the mess.”
“OK, Auntie,” she confirmed. “Lily, do you want to take a bath when we get home?”
“No,” Lily said.
Of course, any other time, she would have begged to take a bath. But because it appeared someone else wanted her to, she was going to say no.
Jimmy just sat there making snapping noises with his mouth, alternately licking and looking at his lollipop.
I guess there are certain advantages to being debilitated at this time in history. With no technology – no TV, no kindles, no computers, no audio books – Dr. Parkinson’s patients had nothing to do to pass the time. It’s mind boggling, though, that for all the marvels of modern-day medicine, they still haven’t come up with a cure, or even a way to effectively treat Parkinson’s. In the beginning stages, the medication helped and probably gave me several more good years, where I was almost symptom free. But eventually, the effectiveness of the medication wore off and actually caused worse symptoms than the disease.
Walking was often my only relief from the all-over body tremors. But it didn’t come easy. Every time I got into a crowd, my feet would refuse to rise off the ground. The only way I could walk was to scuff my feet across the floor. I would think of those old clips of Tim Conway on the Carol Burnett Show I used to watch as a child. I used to laugh so hard at that old man with the spiky white hair and baggy trousers. I now realize the poor character probably had Parkinson’s. He walked in that ridiculously amusing way because he was afraid of falling on his face. Normal walking requires one foot to be off the ground at any given time. With both feet on the ground the chances of falling diminish. Your brain saves your body by refusing to let it lift its feet. The only thing I couldn’t figure out is why, in the beginning, my feet only shuffled when I was in a crowd. Then I realized, it had to do with the oblivious passers-by, who had no idea how scary their frenetic pace and unpredictable darting is to someone whose only goal is to stay vertical. I remember once a feeble old man flashed Lily a terrible scowl for having waddled into his path. I never forgot his ire. I always assumed he disliked her because she was disabled. I now realize, he was probably envisioning the floor coming up to greet his nose because a chubby, careless little kid wasn’t watching where she was going.
Dr. Parkinson’s description about what ultimately happens to his name-sake’s victims terrorizes me, but I make the Kindle read it to me anyway.
“As the disease proceeds towards its last stage, the trunk is almost permanently bowed, the muscular power is more decidedly diminished, and the tremulous agitation becomes violent … His words are now scarcely intelligible … The saliva fails of being directed to the back part of the (mouth), and hence is continually draining from the mouth, mixed with the particles of food, which he is no longer able to clear from the inside of the mouth … As the debility increases and the influence of the will over the muscles fades away, the tremulous agitation becomes more vehement. It now seldom leaves him for a moment; but even when exhausted nature seizes a small portion of sleep, the motion becomes so violent as not only to shake the bed- hangings, but even the floor and sashes of the room. The chin is now almost immovably bent down upon the sternum. The slops with which he is attempted to be fed, with the saliva, are continually trickling from the mouth. The power of articulation is lost. The urine and feces are passed involuntarily; and at the last, constant sleepiness, with slight delirium, and other marks of extreme exhaustion, announce the wished-for release.”
The wished-for release. I’m sorry to admit, I have thought of sneaking the butter knife off my dinner tray and hiding it under my mattress. Or saving up my pain medication and taking it all at one time. The depression of this thing is unbearable, not to mention the physical torment. I was so pleased when euthanasia finally became legal, but Parkinson’s does not qualify as a terminal illness, so the mercy killing laws don’t apply. They wouldn’t apply to me anyway, because I’m more scared of what might happen to Lily if I die than what will happen to me if I live. I don’t know how much longer I have, but it frightens me to think what she’s going to do when her job here is done. What if no one ever really needs her again? Agnes says she will look out for her and ask her to come visit. I hate to ask Terry or Jimmy to take Lily on. Their families have crises of their own. Plus, Lily would have to move states, leaving everything and everyone she’s accustomed to – her job at the grocery store, her group home. I have fantasies of finding Lily’s father in a nursing home and transferring him to this one. Lily’s life could go on status quo, minus me, plus him. Nobody needs to tell me the odds of that, but an old woman should be allowed her wishful musings.
As difficult as it is thinking about a child living without you, it beats the alternative by a wide margin. Losing her has always been one of my greatest fears, and to tell the truth, maybe one of the biggest obstacles in letting myself love her long ago.
One time, I had taken Lily to a park while we waited for Terry and Jimmy to finish soccer practice. I noticed a woman there watching her. She seemed mesmerized watching Lily tag the other children with her smiley little growl. Since Lily was the slowest, where ever she went, she was chronically “it.” Most children hate being “it,” for more than a minute or two. It gets old having people run away from you. Lily didn’t mind. Her appreciation for the thrill of the chase made her very popular on the playground. When the “one-two-three, not it” countdown ruled out all other “its” but Lily, a big smile would creep across her face and she would take off running and screaming and the kids would scatter in laughter. But usually, because Lily lacked a certain amount of coordination, she would take a spill at some point. Which is exactly what happened this day. The woman who was keeping a wistful watch on Lily must have noticed that she belonged to me after I made my way over to comfort her. As I returned to the park bench, the woman ambled closer and with a smile said, “I have a special girl, too. She’s in Heaven now.”
“Oh, I’m sorry,” I said. “How old was she?”
“She was five. She died of Leukemia.”
“Oh, I’m very sorry.”
“Thank you.” Lily let out a loud roar and captured the woman’s attention again. “She is so cute.”
“Thank you,” I said. “What was your daughter’s name?”
“Her name is Jennifer.”
“That’s my sister’s name,” I said. “She died of cancer too. Actually, Lily is her child.”
“Oh, so you’re raising her for your sister.” This seemed to please her.
“God bless you,” she said, putting her hand on my arm. She had a large cluster of small diamonds on her front finger. “I know it’s hard, but she’ll give you more than you’ll ever be able to give her.”
Jen had told me that Lily needed to be checked for Leukemia every year. I had her blood tested just after her seventh birthday and she was now almost 9.
“How did you find out she had Leukemia?” I asked.
“She would get these bruises that just wouldn’t heal,” the woman said.
I wondered if that was happening to Lily and I just hadn’t noticed. No, I thought. She rarely ever gets bruises.
“I miss her so much,” the woman said. Her eyes – encircled with what I imagined was dark, sleepless grief – were fixed back on Lily now.
“She was very special. But it does my heart good to watch your daughter. She’s an angel.”
I imagined that little girl’s casket, white, set in the foreground before her weeping mother’s face, which suddenly morphed into mine. The odds of Lily dying young have always been higher than most. Having Down syndrome had put her at risk for all kinds of other ailments that could take her early: thyroid problems, high blood pressure in the lungs, childhood Leukemia. We’re still dealing with her heart condition and sleep apnea and the increased risk of Alzheimer’s Disease. And there was something else. A mother feels her child’s pain in multiples of ten. If I were to become her mother, it meant I would have to suffer with her. And all her life, there will be dreams she never will fulfill. What of driving a car? Getting married? Buying a house? Having children? I knew there would be children who would tease her, adults who would never understand her and love interests who ignore her. And I soon came to learn there would even be savages who want to see her dead.
I always knew people could be cruel, but I could never have been prepared for the depravity of the comments I saw on YouTube while doing research on Down syndrome. Someone had posted a video of a relative with Down syndrome playing air guitar while listening to his I-Pod. The man looked about 20 and was a bit spastic in his attempts to keep the beat, but he was having the time of his life, enjoying the attention he was getting from the camera. I scrolled down to read the comments and was horrified. Until that moment, I had no idea the caliber of hatred Lily might encounter in her life. The language was so disgustingly repugnant, I cannot bring myself to repeat it. But just imagine the ugliest thing that can possibly be said about a human being, and you haven’t even come close.
The most disturbing thing about stumbling upon those vile comments is that it was like looking into a fun house mirror. I saw some of my own beliefs reflected back at me – distorted and hideously exaggerated, yes – but still recognizable as my very own. I remember the first time I ever gave any thought to the idea that people’s lives did not all have the same value. There was a newspaper story a couple of years before Lily was born, about a man who jumped into a septic tank to save his son, who had fallen in when the lid gave way. The father of seven grown boys was an athletic director for a private college, obviously a very intelligent and accomplished man. His 20-year-old son had Down syndrome. The father was able to hold the son’s head above the sewage until help came to pull him out. But the father – and grandfather to 24 – drowned. I thought to myself “what a waste of such a gifted and productive life, just to save someone who would probably contribute very little to the world and die young anyway.” I was ashamed of the thought and briskly chased it from my head, only to have it return throughout my life in a number of distressing disguises.
Now comes a dawning in my gut, a possibility I have not considered until this moment. What if Lily’s father had exhibited some level of inexplicable disgust for her differentness? Could that have been the reason Jen wanted him erased from Lily’s future? That would explain the adamant resolve of a woman who had behaved otherwise reasonably and rationally in most every aspect of her life. Maybe my promise is best kept after all. There has to be a lower-risk method of finding Lily someone to love.
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Copyright 2017 Sherry Boas