sammy and danny spent most of today in our bed being lethargic and sleepy together. They have low fevers and runny noses. They stare together at the new fish tank in our bedroom where a couple dozen baby convict fish glide over a zen-like landscape of smooth pebbles. When I hear rumply snores, I know they are dozing off. Sometimes they wake up and ruffle through their books---The Brothers Karamazov and Mr. Bear's Vacation. Then they nod off again because these books are obviously boring. It is very sweet but I hope they feel better tomorrow because I miss them.
Wednesday, January 21, 2009
Friday, January 16, 2009
Gifts of the Magi
Everything was normal with Steve Whitby. Well, except that his right finger and thumb twitched. And was that a tremor in his right arm? Sort of, yes. And maybe, maybe his right foot dragged a little big. Not a big deal, really.
The tremor, twitches and dragging got a bit worse, so Steve mentioned them to his doctor who referred him to a neurologist. The neurologist assessed the situation and said, “We’re looking at a brain tumor or Wilson’s Disease, both fatal. And oh, there’s this itty-bitty chance of Parkinson's Disease, but honestly, you’re way too young.”
In January 2003, at the age of 30, Steve was diagnosed with young-onset Parkinsons. Of the one million Parkinsons sufferers in the United States, only a few thousand develop the disease under the age of 50. Steve is one of these.
I explained to God that this was completely out of line. His omnipotence was looking indistinguishable from impotence. Top of my list of grievances was that Steve is a gifted song writer and guitarist. Would there come a day when he couldn’t play his guitar? His tremors could sabotage so much, too much.
Later that year, our small group stuffed fund-raising envelopes for the Parkinson Association of the Carolinas. It felt like we were doing something, a little bitty something.
Four months after his diagnosis, Steve met Tami, our other friend. They fell in love--really, really deep love. Gooey love. Happy love. Love that made them both smile way too big and for way too long. When Tami eventually vowed, “In sickness and in health,” her eyes were wide open to the possibility that a husband in a wheelchair might be in her future, but that was okay. Souls are not wheelchair-able, not Steve’s soul anyway.
Steve’s right side got a bit worse and the doctor ramped him up to stronger meds. The 10-year trajectory for the progression of his disease was reached in about 3 years. By 33, Steve was on the strongest medication available at that time to Parkinsons sufferers.
Next time we stuffed envelopes, baby Sam came and gurgled on his blanket with us.
Today, at age 36, Steve can no longer tie his shoes in the mornings. Well, he can, but his fingers enjoy the dexterity of boxing mitts. Steve’s mornings go something like this: the alarm goes off at 6 a.m. and his eyes open, but his body is, as he says, “creaky.” He reaches for his water and pills. Slowly his muscles wake up. By 6:30, he can sit up, shuffle around, get dressed. Buttons are a hassle. Writing or typing are almost impossible until Mirapex courses fully through his body. And like I said, finding the dexterity to tie his shoes is about as easy as me finding the dexterity to be a contortionist. This is why his favorite pair of shoes are Sketcher Palms. They’re light-weight, lace-free, and even trendy. Their elastic bands let him slide his stiff feet inside.
Despite all of this, Steve is not one to talk about his situation. Even Tami barely ever catches him taking his cocktail of three different meds THIRTEEN times a day. He’s that sneaky and he never complains. But a few weeks before Christmas 2008, it slipped out that Sketcher had stopped making Palms. He’d tried other shoes, but nothing worked quite like Sketcher Palms. We looked down at this worn shoes. He’d been wearing the same pair almost every day for over a year.
In the days that followed, we kicked into gear. High gear. Every shoe store in the Charlotte area and every shoe outlet online was harassed by our searching voices and nimble fingers. Simon called his friend in NY who had a cousin in London to check stores there. Perhaps best of all, Laurie started bidding on a pair that showed up on E-bay only to discover that Steve was also in the bidding. She outbid him. She was a woman on a mission.
Two weeks before Christmas, Steve’s doctor looked at his scuffed up Sketcher Palms and said, “Dude, ditch the shoes. They're just socks with rubber on the bottom.” (my paraphrase)
A week later we had a Christmas feast and white elephant gift exchange. That night, every size and color of box and bag appeared under the Hopkins’ tree. Steve asked Tami what two gifts she’d wrapped for them. Tami, thinking fast, said she’d rather not tell. She’d found such great gifts and wanted him to be surprised. Steve shoveled into the broccoli casserole, oblivious.
After we were sufficiently stuffed, we tottered into the living room. “We're all going to take a gift and open it on the count of three,” said Dennis, one of Steve’s best friends. “After that, the white elephant part begins.” Laurie handed out the gifts. We shook our boxes and feigned puzzled looks on our faces.
One…
Two…
Three…!!!!
Paper ripped, bows bounced, ribbons zig-zagged in the air, and tissue bloomed in crinkly clouds before settling knee-deep on the floor. In a matter of seconds, all 16 of us were holding aloft one Sketcher Palm, size 10.
Tami started to cry.
Steve started to cry.
Then they both smiled their smiles that are way too big and last for way too long.
I wonder what the Magi were thinking when they brought the baby Jesus gold, frankincense and myrrh. We may not be as wise as them, and we certainly don't come with the gear---turbans, star-gazing skills, and camels. But this Christmas, in our own way, we brought the baby Jesus shoes—Sketcher Palms, size 10, to be exact. Steve gets to wear them for now, while Jesus lives inside his heart, his unwheelchair-able heart.
The tremor, twitches and dragging got a bit worse, so Steve mentioned them to his doctor who referred him to a neurologist. The neurologist assessed the situation and said, “We’re looking at a brain tumor or Wilson’s Disease, both fatal. And oh, there’s this itty-bitty chance of Parkinson's Disease, but honestly, you’re way too young.”
In January 2003, at the age of 30, Steve was diagnosed with young-onset Parkinsons. Of the one million Parkinsons sufferers in the United States, only a few thousand develop the disease under the age of 50. Steve is one of these.
I explained to God that this was completely out of line. His omnipotence was looking indistinguishable from impotence. Top of my list of grievances was that Steve is a gifted song writer and guitarist. Would there come a day when he couldn’t play his guitar? His tremors could sabotage so much, too much.
Later that year, our small group stuffed fund-raising envelopes for the Parkinson Association of the Carolinas. It felt like we were doing something, a little bitty something.
Four months after his diagnosis, Steve met Tami, our other friend. They fell in love--really, really deep love. Gooey love. Happy love. Love that made them both smile way too big and for way too long. When Tami eventually vowed, “In sickness and in health,” her eyes were wide open to the possibility that a husband in a wheelchair might be in her future, but that was okay. Souls are not wheelchair-able, not Steve’s soul anyway.
Steve’s right side got a bit worse and the doctor ramped him up to stronger meds. The 10-year trajectory for the progression of his disease was reached in about 3 years. By 33, Steve was on the strongest medication available at that time to Parkinsons sufferers.
Next time we stuffed envelopes, baby Sam came and gurgled on his blanket with us.
Today, at age 36, Steve can no longer tie his shoes in the mornings. Well, he can, but his fingers enjoy the dexterity of boxing mitts. Steve’s mornings go something like this: the alarm goes off at 6 a.m. and his eyes open, but his body is, as he says, “creaky.” He reaches for his water and pills. Slowly his muscles wake up. By 6:30, he can sit up, shuffle around, get dressed. Buttons are a hassle. Writing or typing are almost impossible until Mirapex courses fully through his body. And like I said, finding the dexterity to tie his shoes is about as easy as me finding the dexterity to be a contortionist. This is why his favorite pair of shoes are Sketcher Palms. They’re light-weight, lace-free, and even trendy. Their elastic bands let him slide his stiff feet inside.
Despite all of this, Steve is not one to talk about his situation. Even Tami barely ever catches him taking his cocktail of three different meds THIRTEEN times a day. He’s that sneaky and he never complains. But a few weeks before Christmas 2008, it slipped out that Sketcher had stopped making Palms. He’d tried other shoes, but nothing worked quite like Sketcher Palms. We looked down at this worn shoes. He’d been wearing the same pair almost every day for over a year.
In the days that followed, we kicked into gear. High gear. Every shoe store in the Charlotte area and every shoe outlet online was harassed by our searching voices and nimble fingers. Simon called his friend in NY who had a cousin in London to check stores there. Perhaps best of all, Laurie started bidding on a pair that showed up on E-bay only to discover that Steve was also in the bidding. She outbid him. She was a woman on a mission.
Two weeks before Christmas, Steve’s doctor looked at his scuffed up Sketcher Palms and said, “Dude, ditch the shoes. They're just socks with rubber on the bottom.” (my paraphrase)
A week later we had a Christmas feast and white elephant gift exchange. That night, every size and color of box and bag appeared under the Hopkins’ tree. Steve asked Tami what two gifts she’d wrapped for them. Tami, thinking fast, said she’d rather not tell. She’d found such great gifts and wanted him to be surprised. Steve shoveled into the broccoli casserole, oblivious.
After we were sufficiently stuffed, we tottered into the living room. “We're all going to take a gift and open it on the count of three,” said Dennis, one of Steve’s best friends. “After that, the white elephant part begins.” Laurie handed out the gifts. We shook our boxes and feigned puzzled looks on our faces.
One…
Two…
Three…!!!!
Paper ripped, bows bounced, ribbons zig-zagged in the air, and tissue bloomed in crinkly clouds before settling knee-deep on the floor. In a matter of seconds, all 16 of us were holding aloft one Sketcher Palm, size 10.
Tami started to cry.
Steve started to cry.
Then they both smiled their smiles that are way too big and last for way too long.
I wonder what the Magi were thinking when they brought the baby Jesus gold, frankincense and myrrh. We may not be as wise as them, and we certainly don't come with the gear---turbans, star-gazing skills, and camels. But this Christmas, in our own way, we brought the baby Jesus shoes—Sketcher Palms, size 10, to be exact. Steve gets to wear them for now, while Jesus lives inside his heart, his unwheelchair-able heart.
Saturday, January 10, 2009
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