In the worst of it, Joe Smith believes his mother is in there somewhere, behind her vacant eyes, a spark of the woman lost in a mutated gene at the end of a chromosome that could be coming for him too.
Her name is Lee. She is 57 years old. She married Joe’s father, Mike, 35 years ago. They had a son, Joseph, and a daughter, Megan, two years later. Joe went off to be a ballplayer for the Los Angeles Angels. Megan is raising a family of her own. Mike and Lee had plans for these years. Now Mike reminds her to keep a good grip on the handrail and sometimes helps her dress.
Lee has her bucket list, all written out. She wants to go on a helicopter ride. She wants to try one of those zip lines. She hopes to see Joe and his wife, Allie, have children.
She showed her list to Joe last Mother’s Day, a few years after she’d been diagnosed with Huntington’s disease, a curse that first incapacitated and then took her own mother. He saw what was first on the list and grinned. Seriously, zip lining.
“The disease, the pills, and then the combination of those two, sometimes I see that in her eyes,” he said. “It’s like, ‘Are you here?’ Or I can tell she’s not here. Then there’s other times when her eyes just light up. She’s here. As it goes on, those times become less and less.”
He searches for a familiar gesture, studies her for a smile coming, for the laugh he remembers when he was a boy and she spun a good number in Chutes and Ladders. He holds her and can feel the disease in her muscles, how it has made her so rigid, fragile and rigid at the same time, as though she were bracing against what it would bring next.
“It’s tough,” he said. “It’s just tough.”
He wiped his eyes.
There is no cure for Huntington’s disease, a genetic disorder that afflicts some 30,000 people in the United States, that is carried by another two or three times as many yet to be diagnosed. There is only the irreversible trudge, a decline of muscular coordination, brain function and behavioral leanings. There is only helplessness. There is only as much time as it will allow.
It decides. And Lee, and others like her, and their families, endure the day. They start again the next day with a little less, and the following day with less than that, and there is no reprieve. There is only less.
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Lee, Joe and Mike Smith
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Joe – Lee has always called her son Joseph, and the telephone conversation that would confirm her diagnosis began with a hollow, “Hi, Joseph,” and haunts him still – sat recently in a restaurant near his home in Newport Beach, Calif. He was on his way to work. He is strong and healthy and has a 50-50 chance of inheriting the days that get dimmer and more difficult and frightening and, if you let it be, hopeless. He has not submitted to a test.
“What are you going to do?” he asked. “Right now, I mean, is there a benefit? Is somebody going to cure me if I have it?”
Worse, perhaps, than not knowing if it is in you or not, is knowing for sure it is. At least that way there are hours, maybe even days, without it, until the phone rings.
“Hi, Joseph.”
Huntington’s disease is described as a neurodegenerative genetic disorder. Of the symptoms, Joe said, “The way I describe it to people is Alzheimer’s, Parkinson’s and dementia, bundle them up and that’s what you get. It’s nicknamed the Devil’s Disease for that reason. It’s the bad stuff from every disease you can think of, and you put it in one person.”
Only it’s less complicated than that in a house in Cincinnati, where Mike and Lee live. It’s not far from the house in which Joe grew up, where Lee would call in her Joseph from outside to do his homework, or wash up for dinner. Her specialty, Joe’s favorite, was meatballs. They loved that house, but it was too big with the kids gone. Also, that house had two stories, and before long that staircase was going to be too much.
In the new place, accounting for the disease that hounds Lee isn’t as important anymore. Navigating the days is important. Getting one foot to follow the other is important. Getting through a page of the latest John Grisham, and remembering that page before getting to the next. Folding laundry. Packing to go visit her Joseph. Matching the pills with what is slipping. Fighting off the fear that it’s coming too fast. It’s all coming too fast now.
The disease’s genetic marker was discovered only 33 years ago. The Huntington’s gene was found 10 years after that. So Joe and Allie have started a website called helpcurehd.com they hope will help fund progress toward a better understanding of the disease and, maybe, eventually, a cure. Maybe for Lee.
Sunday’s Mother’s Day is the fifth since she was diagnosed. The fifth that Joe will wake up and remember it is a special day on the calendar, that there are flowers in a vase near Lee, that there is a colorful card that assures her again – in writing – that she is loved and appreciated. He’ll go to a ballpark where pink is splashed to honor moms sick and healthy, and there’ll be families in the crowd, and Joe will love all of that. He will think of his mom and everyone else’s too, and know he is lucky to have her, all of her, down to every last chromosome.
“I think it’s good,” he said. “She’s still my mom. She still took care of me and raised me and my sister. I don’t think Mother’s Day is necessarily about what you are right now, you know what I mean? It’s more about what you’ve been, what my mom has been through for you, for me, for them. I don’t look at her any differently because of what she’s going through now. That’s not what it’s about. I’ll be happy. I’ll be proud that she’s my mom.
“And I’ll think it’s cool. I’ll get texts. I’ll get people to walk up to me that know me and met my mom, that kind of know what’s going on, and they’ll be like, ‘Hey, make sure you tell your mom I said hello. Tell her happy Mother’s Day.’ I don’t know, maybe they tell everybody else they see the same thing. I feel like they don’t. ‘Hey, how’s your mom? Is she all right?’ Little stuff like that. It’s nice to hear.”
Joe will say today she is OK. Today she is good. Today she is in there, fighting so hard for tomorrow.
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