And, in the end, the love you take is equal to the love you make.
—Paul McCartneyPlease donate to epilepsy research at: http://www.calvinscure.com
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| photo by Michael Kolster |
calvin's story
2.01.2012
1.31.2012
two big babies
On the end of the phone a man’s stern voice asks, “who’s this?” I reply, knowing it’s my brother Matt, “who’s THIS?” Then he tells me that I should identify myself, so I say that I’m his worst nightmare. “Nope, my worst nightmare is a dirty diaper,” he quips, meaning our mother’s.
He went on to tell me, with a half-pathetic chuckle in his voice, that he found shit in Mom’s bathroom sink the other night, that she’d tried to stuff it down the drain. After the initial amusement, all I could say was a pitiful, “Oh, Matt.”
It seems that Mom had a bit of a setback—if you can call it that considering Alzheimer’s is a progressive disease—since returning home from a holiday trip with my sister to visit my brother Scott and his family in Tucson. “Day after she came back she couldn’t get out of the bed,” he added. My heart sunk and I could feel soft furrows gathering in my brow. He suggested I come for a visit within the next several months while she still has traces of decent cognitive and physical function.
I spoke with my mom on the phone the next day. With some coaxing she remembered my name. Her voice was lower—slower than usual—when I asked her how she was feeling, to which she said fine. “What’s the weather like, Mom?” Stumbling over her words, she said something like, “I can’t tell because they aren’t there.” I figured she must have meant the windows. “What’s not there, Mom?” to which she answered, “The lions.” I’d noticed recently that she’s been having more difficulty describing things, but now it appears as though real confusion is setting in.
Matt and I had compared caregiver notes. I told him that Calvin could walk, by himself, up the stairs holding the banister, though slowly, not consistently and not without a spotter since he falls so frequently. Matt seemed impressed. He described how he and his wife Stacey had installed some railings in their home for Mom’s safety, but that within a year she might be in a wheelchair. “Calvin’s goin’ up while Mom’s goin’ down,” he said. They’re like two big babies, I thought. We feed and clothe them, help them walk around to keep them fit, help them into their jammies, tuck them in and kiss them goodnight. I told Matt I loved him and thanked him for taking care of mom, and that I wished there was something I could do to help. He offered that he couldn’t help me with Calvin either, then added something like, “You should thank Stacey because she’s a goddamn saint for what she does and has to put up with,” and, because of Calvin, I know what he means. At least I think I do.
I thought about the novel Times Arrow by Martin Amis in which life’s trajectory is backwards, the main character getting younger with each passing year—not unlike Benjamin Button—and eventually dying when he enters his mother’s womb. Yep, Mom’s on her way back to the womb of the earth, I think. I hope, at a certain point, she goes there fast.
Mom used to talk a lot about how she didn’t want to live once she started forgetting things, people. I hope to hell she doesn’t have to suffer a prolonged period of confusion and unhappiness. I thought about the autumn of 2010 when my sister and I took her on an Alaskan cruise. She’d snuck to the bathroom in the middle of the night, somehow avoiding the booby-trapped scarf and umbrella we’d rigged to wake us up in this event. She had clogged the toilet requiring the plumber to visit our room at two in the morning. Mom, in utter shame, whispered to Caron, “I just want to die,” then luckily proceeded to forget all about it.
Just after I got off the phone with my mom, Calvin’s bus pulled up. Cindie, his driver, asked how I was doing, noting my sorrowful face. I mentioned my mom and how she’s deteriorating. Idling the big empty bus at the curb, Cindie told me that her mom suffers from Alzheimer’s, too. I shouted over the diesel engine that I hope my mom goes quickly, just like she’d always wished, and that (gesturing) maybe I’d need to give her a swift kick in the butt off of some cliff one day to save her from the misery she has always dreaded. Cindie said something like, “Let me know when, I’ll bring my mom and we’ll do a twofer.” “Yeah,” I said, “like Thelma and Lousie,” and we both laughed miserably, blew each other kisses and she sailed off down the street.
He went on to tell me, with a half-pathetic chuckle in his voice, that he found shit in Mom’s bathroom sink the other night, that she’d tried to stuff it down the drain. After the initial amusement, all I could say was a pitiful, “Oh, Matt.”
It seems that Mom had a bit of a setback—if you can call it that considering Alzheimer’s is a progressive disease—since returning home from a holiday trip with my sister to visit my brother Scott and his family in Tucson. “Day after she came back she couldn’t get out of the bed,” he added. My heart sunk and I could feel soft furrows gathering in my brow. He suggested I come for a visit within the next several months while she still has traces of decent cognitive and physical function.
I spoke with my mom on the phone the next day. With some coaxing she remembered my name. Her voice was lower—slower than usual—when I asked her how she was feeling, to which she said fine. “What’s the weather like, Mom?” Stumbling over her words, she said something like, “I can’t tell because they aren’t there.” I figured she must have meant the windows. “What’s not there, Mom?” to which she answered, “The lions.” I’d noticed recently that she’s been having more difficulty describing things, but now it appears as though real confusion is setting in.
Matt and I had compared caregiver notes. I told him that Calvin could walk, by himself, up the stairs holding the banister, though slowly, not consistently and not without a spotter since he falls so frequently. Matt seemed impressed. He described how he and his wife Stacey had installed some railings in their home for Mom’s safety, but that within a year she might be in a wheelchair. “Calvin’s goin’ up while Mom’s goin’ down,” he said. They’re like two big babies, I thought. We feed and clothe them, help them walk around to keep them fit, help them into their jammies, tuck them in and kiss them goodnight. I told Matt I loved him and thanked him for taking care of mom, and that I wished there was something I could do to help. He offered that he couldn’t help me with Calvin either, then added something like, “You should thank Stacey because she’s a goddamn saint for what she does and has to put up with,” and, because of Calvin, I know what he means. At least I think I do.
I thought about the novel Times Arrow by Martin Amis in which life’s trajectory is backwards, the main character getting younger with each passing year—not unlike Benjamin Button—and eventually dying when he enters his mother’s womb. Yep, Mom’s on her way back to the womb of the earth, I think. I hope, at a certain point, she goes there fast.
Mom used to talk a lot about how she didn’t want to live once she started forgetting things, people. I hope to hell she doesn’t have to suffer a prolonged period of confusion and unhappiness. I thought about the autumn of 2010 when my sister and I took her on an Alaskan cruise. She’d snuck to the bathroom in the middle of the night, somehow avoiding the booby-trapped scarf and umbrella we’d rigged to wake us up in this event. She had clogged the toilet requiring the plumber to visit our room at two in the morning. Mom, in utter shame, whispered to Caron, “I just want to die,” then luckily proceeded to forget all about it.
Just after I got off the phone with my mom, Calvin’s bus pulled up. Cindie, his driver, asked how I was doing, noting my sorrowful face. I mentioned my mom and how she’s deteriorating. Idling the big empty bus at the curb, Cindie told me that her mom suffers from Alzheimer’s, too. I shouted over the diesel engine that I hope my mom goes quickly, just like she’d always wished, and that (gesturing) maybe I’d need to give her a swift kick in the butt off of some cliff one day to save her from the misery she has always dreaded. Cindie said something like, “Let me know when, I’ll bring my mom and we’ll do a twofer.” “Yeah,” I said, “like Thelma and Lousie,” and we both laughed miserably, blew each other kisses and she sailed off down the street.
1.30.2012
compassion is a verb
Compassion is a verb.
Lying in bed last night I got to thinking, the tangled lattice of gently swaying pines outside our window is good for that—mesmerizing. I began to contemplate what it is that motivates people to give charitably—or not to.
I wonder if people give to causes like cancer research, world hunger or disaster relief because they know someone who is personally impacted? Do they give because they know their friends give? Do they give because they truly want to make the world a better place? Do they give because they are compassionate, selfless and loving? Do they give because of their faith, their conscience?
On the contrary, what makes able people decide not to give? To ignore the meager tin cup with its begging coin slot sitting on the grocer’s checkout counter—you know—the one with the photo of the sick child? To walk unflinchingly past the homeless woman asking for nothing more than pocket change or food? What makes someone ignore appeals for aid when they’ve got ample resources to help? Is it fear? Avarice? Mood? Judgment? Apathy? Righteousness? Ignorance? Though, regrettably, I myself have neglected to give when I could have, I still can't claim to know the motivation of others. And although I am not a religious person, and as silly and cliche as it might sound, sometimes I find myself reflexively asking, what would Jesus do, albeit assuming he had sufficient funds?
The only thing I can figure is that those who choose to give charitably are either born with the capacity for compassion written deeply within their DNA or they have perhaps suffered some hardship of their own that has allowed them to more easily step outside themselves and to truly, deeply understand what it is to fulfill others needs; to be selfless enough to give without expecting something in return. Some call these philanthropists heroes. Some might call them saints. I call them exemplary, kind, noble.
In my campaign to promote awareness of epilepsy’s prevalence and scourge—and in turn to raise funds for research into a cure—I’ve been deeply moved by the charity of some. A woman I barely know, perhaps not at all except for her name and the fading memory of her beautiful teenage face, made a generous donation to the cause. In turn, a friend of hers kicked in the same amount. An acquaintance, who hasn’t displayed the slightest awareness that we even have a child—much less one who is very ill—gave a hundred dollars. Old friends, new friends, scores of compassionate folks living in our community have donated. People who’ve never met Calvin—who’ve never laid an eye on us—have given liberally. All have donated to help free our boy from the lash of seizures and the crush of drugs that continue to haunt his days and nights, and we are deeply grateful.
Yes, I think the Buddhist monk Thich Nhat Hanh is right; compassion is a verb. If you can't think of a reason not to give during this brief campaign to raise funds for epilepsy research and celebrating Calvin's eighth spin around the sun (which is a no small accomplishment) then, can I humbly ask, will you?
http://www.calvinscure.com
―Thich Nhat Hanh
Lying in bed last night I got to thinking, the tangled lattice of gently swaying pines outside our window is good for that—mesmerizing. I began to contemplate what it is that motivates people to give charitably—or not to.
I wonder if people give to causes like cancer research, world hunger or disaster relief because they know someone who is personally impacted? Do they give because they know their friends give? Do they give because they truly want to make the world a better place? Do they give because they are compassionate, selfless and loving? Do they give because of their faith, their conscience?
On the contrary, what makes able people decide not to give? To ignore the meager tin cup with its begging coin slot sitting on the grocer’s checkout counter—you know—the one with the photo of the sick child? To walk unflinchingly past the homeless woman asking for nothing more than pocket change or food? What makes someone ignore appeals for aid when they’ve got ample resources to help? Is it fear? Avarice? Mood? Judgment? Apathy? Righteousness? Ignorance? Though, regrettably, I myself have neglected to give when I could have, I still can't claim to know the motivation of others. And although I am not a religious person, and as silly and cliche as it might sound, sometimes I find myself reflexively asking, what would Jesus do, albeit assuming he had sufficient funds?
The only thing I can figure is that those who choose to give charitably are either born with the capacity for compassion written deeply within their DNA or they have perhaps suffered some hardship of their own that has allowed them to more easily step outside themselves and to truly, deeply understand what it is to fulfill others needs; to be selfless enough to give without expecting something in return. Some call these philanthropists heroes. Some might call them saints. I call them exemplary, kind, noble.
In my campaign to promote awareness of epilepsy’s prevalence and scourge—and in turn to raise funds for research into a cure—I’ve been deeply moved by the charity of some. A woman I barely know, perhaps not at all except for her name and the fading memory of her beautiful teenage face, made a generous donation to the cause. In turn, a friend of hers kicked in the same amount. An acquaintance, who hasn’t displayed the slightest awareness that we even have a child—much less one who is very ill—gave a hundred dollars. Old friends, new friends, scores of compassionate folks living in our community have donated. People who’ve never met Calvin—who’ve never laid an eye on us—have given liberally. All have donated to help free our boy from the lash of seizures and the crush of drugs that continue to haunt his days and nights, and we are deeply grateful.
Yes, I think the Buddhist monk Thich Nhat Hanh is right; compassion is a verb. If you can't think of a reason not to give during this brief campaign to raise funds for epilepsy research and celebrating Calvin's eighth spin around the sun (which is a no small accomplishment) then, can I humbly ask, will you?
http://www.calvinscure.com
1.29.2012
1.28.2012
margot, lisbeth and calvin
Margot
By Madeline Curtis, age 14, Margot’s sister
I
wish there was a cure. The pills are supposed to work, and maybe they
do—on other people. But they don’t work on Margot. The diet didn’t work,
either. The fancy diet, the one that led to so much stress in our
house, didn’t work. The seizures just keep coming back, and my little
sister, eight years old, has to endure them. I wish there was a cure so
that Margot, who can’t even speak or walk, wouldn’t have to struggle so
much. I wish there was a cure, because I’m tired of all the new
medicines that show up in the cabinet above the sink. I wish there was a
cure, because I hate the helplessness I feel, watching her limbs freeze
and her eyes roll up into her head. I wish there was a cure, because I
want all of the people who carry the burden of epilepsy to feel relief.
 |
| Margot |
Lisbeth
By Martha Miller, Lisbeth’s mom
Write about lost love, my professor says. All I can think of is Lisbeth, and how I lost the little girl she was that day in sparkling summer. She'd been ill and was feeling better, then awoke that morning saying, “Mommy I don't feel good.” I laid her on the couch and gave her some Tylenol. Twenty minutes later it happened: she was grey, her eyes rolled back, the whites of them now yellow, moist, a faint clicking in her throat. Her body was stiff, jittery. I yelled to my husband Garry to come. “Call 911,” he said, and somehow I did. Waiting on the front steps for the ambulance the word EPILEPSY kept playing in my head. The ambulance arrived and the men carried her out. Garry rode with her. I followed in our car praying, “Oh God, please, this is not how I want her to grow up." In the emergency room Lisbeth laid on the stretcher. They'd cut her pink summer shorts in half, shoved tubes down her throat. Garry leaned over her tiny body, her perfect pink six year old body, her blue eyes, now shut. What (the Hell) was happening? I wanted to turn and run away. Garry saw it in my face and said gently, “C'mon Mart.” I walked to the cot where she lay, and I began to sing to her. I sang all the lullabies I'd sung to her when she was a baby. I knew what my job was now.
 | ||
| Lisbeth |
Calvin
By Christy Shake, Calvin’s mom
Our nightmare started when Calvin was eighteen months old. He had spiked a fever, so we gave him some acetaminophen and called our local hospital. The doctor assured us that we had nothing to worry about even though I’d told him Calvin had serious neurological deficits. Within mere minutes of hanging up the phone Calvin suddenly cracked like a whip into an arch stiff as a steel rod. His eyes bulged and his lips pursed as if drawn up with thread. My husband Michael gathered him up, instinctively—worriedly—rocking him back and forth as if to jostle the seizure out while I white-knuckle-called for an ambulance. “My son is having a seizure,” I blurted, “he’s not breathing—he’s turning blue!” The walls began closing in on me. Sounds morphed and muffled. Everything around me looked hazy—blurred—as if in a cloud, except for my boy who remained in sharp focus. Cradled in Michael’s arms, now jerking rhythmically—violently—Calvin turned ashen like a corpse and his eyes rolled back into his head. Time stood still as in a dream. I wasn’t sure if Calvin was alive even though his convulsions persisted—I couldn’t find a pulse.
My next memory is of the cold hard edges in the ambulance, the sterile, sickeningly gray vinyl benches. My tiny child lay in the center of a sheeted white gurney—his eyes now vacant and still—staring up in a catatonic gaze at the bluish light in the ceiling. I feared he might remain that way forever because of the seizure, or worse—die. Little did I know then that some kids do.
By Christy Shake, Calvin’s mom
Our nightmare started when Calvin was eighteen months old. He had spiked a fever, so we gave him some acetaminophen and called our local hospital. The doctor assured us that we had nothing to worry about even though I’d told him Calvin had serious neurological deficits. Within mere minutes of hanging up the phone Calvin suddenly cracked like a whip into an arch stiff as a steel rod. His eyes bulged and his lips pursed as if drawn up with thread. My husband Michael gathered him up, instinctively—worriedly—rocking him back and forth as if to jostle the seizure out while I white-knuckle-called for an ambulance. “My son is having a seizure,” I blurted, “he’s not breathing—he’s turning blue!” The walls began closing in on me. Sounds morphed and muffled. Everything around me looked hazy—blurred—as if in a cloud, except for my boy who remained in sharp focus. Cradled in Michael’s arms, now jerking rhythmically—violently—Calvin turned ashen like a corpse and his eyes rolled back into his head. Time stood still as in a dream. I wasn’t sure if Calvin was alive even though his convulsions persisted—I couldn’t find a pulse.
My next memory is of the cold hard edges in the ambulance, the sterile, sickeningly gray vinyl benches. My tiny child lay in the center of a sheeted white gurney—his eyes now vacant and still—staring up in a catatonic gaze at the bluish light in the ceiling. I feared he might remain that way forever because of the seizure, or worse—die. Little did I know then that some kids do.
 |
| Calvin |
Margot, Lisbeth and Calvin are just three of as many as three million Americans, and their families, who suffer from epilepsy, and who likely will not be released from their misery until a cure is discovered.
During this brief campaign please, show your compassion and donate to CURE epilepsy research at: http://www.calvinscure.com
1.27.2012
friday faves - if it were mine
When I was in high school I worked as a lifeguard at several
community pools. It was at one of those pools when I first encountered
a child with Down syndrome.
I don’t remember his name, and his age was unclear, but I suppose he was a teenager. He'd appear often on the pool deck, drop his towel, whip off his shirt and take a running dive—more like a painful belly-flop—into the water. He’d swim flat-out with windmill arms for about ten lengths before hopping out, beet red. Then he’d dry off, don his shirt and exit as swiftly as he had arrived. I have thought of him often over the years wondering what his parents were like, who his friends were and what he liked to do besides swim.
Throughout my college years I continued to meet a handful of other youths and adults with Down syndrome, mostly at grocery stores, bagging my food items or retrieving carts with what seemed to me great care and pride. I happily engaged with them if they showed any interested.
And while watching the film Fried Green Tomatoes nearly twenty years ago I was quite moved during a particular scene. In it, Jessica Tandy plays Ninny Threadgoode, an old woman living in a nursing home who, at one point wearing a bright smile, talks about her child in a soft southern drawl:
She went on to say:
That scene left an enduring impression on me though it would be years before I had a child of my own.
My observations and encounters—and subsequently the film scene—came together into a kind of mosaic that compelled me to ask myself, even as a young person, what if I had a child with Down syndrome? I wondered if I might become depressed, fall into a downward spiral and plunge deep into a black despair. Might I run away or kill myself? My answer was always a resounding "no."
No, I wouldn't. I'd remain the hopelessly optimistic person I have always been. I would prove to be a wonderful mother to this child. He would become the light of my life and I would help him realize his full potential. I would love him for all of his features unique to him.
Thinking back, I am thankful that these questions occurred to me. I have no idea whether my peers pondered these same kind of realities. Calvin doesn't have Down syndrome, but was I having some sort of premonition about him? I don’t think so. My query might be more adequately explained by the fact that I have always thought it paramount to consider the life of another and wonder how it would be if it were mine.
Please share Calvin's story. Help bring us one step closer to a cure for epilepsy during this brief campaign by donating at: http://www.calvinscure.com
This post was originally published in December 2010.
I don’t remember his name, and his age was unclear, but I suppose he was a teenager. He'd appear often on the pool deck, drop his towel, whip off his shirt and take a running dive—more like a painful belly-flop—into the water. He’d swim flat-out with windmill arms for about ten lengths before hopping out, beet red. Then he’d dry off, don his shirt and exit as swiftly as he had arrived. I have thought of him often over the years wondering what his parents were like, who his friends were and what he liked to do besides swim.
Throughout my college years I continued to meet a handful of other youths and adults with Down syndrome, mostly at grocery stores, bagging my food items or retrieving carts with what seemed to me great care and pride. I happily engaged with them if they showed any interested.
And while watching the film Fried Green Tomatoes nearly twenty years ago I was quite moved during a particular scene. In it, Jessica Tandy plays Ninny Threadgoode, an old woman living in a nursing home who, at one point wearing a bright smile, talks about her child in a soft southern drawl:
When he was born, the doctor said it would be best if I didn't
see him. He said his mind wouldn't develop past the age of five, and I
should put him in an institution, because the burden of raisin' a child
like that would be too great.
She went on to say:
I smiled at him and I asked for the baby. Why, from the minute he
was born, Albert was the joy of my life. The Lord's greatest gift. I
don't believe there was a purer soul on this earth. I had him with me
til' he was 30. Then he went to sleep and he didn't wake up. Sometimes
I can't wait to get to Heaven to see him again.
That scene left an enduring impression on me though it would be years before I had a child of my own.
My observations and encounters—and subsequently the film scene—came together into a kind of mosaic that compelled me to ask myself, even as a young person, what if I had a child with Down syndrome? I wondered if I might become depressed, fall into a downward spiral and plunge deep into a black despair. Might I run away or kill myself? My answer was always a resounding "no."
No, I wouldn't. I'd remain the hopelessly optimistic person I have always been. I would prove to be a wonderful mother to this child. He would become the light of my life and I would help him realize his full potential. I would love him for all of his features unique to him.
Thinking back, I am thankful that these questions occurred to me. I have no idea whether my peers pondered these same kind of realities. Calvin doesn't have Down syndrome, but was I having some sort of premonition about him? I don’t think so. My query might be more adequately explained by the fact that I have always thought it paramount to consider the life of another and wonder how it would be if it were mine.
Please share Calvin's story. Help bring us one step closer to a cure for epilepsy during this brief campaign by donating at: http://www.calvinscure.com
This post was originally published in December 2010.
1.26.2012
discover your world
Your work is to discover your world, and then with all your heart give yourself to it.
—Buddha
—Buddha
 |
| photo by Michael Kolster |
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