Inside the O'Briens (32 page)

CHAPTER 36

T
hey're in the waiting room at the genetic counseling clinic. All of them. Katie, JJ, Colleen and baby Joey, Patrick, Meghan, her mom and dad, and Felix. She brought everyone. How's that for bringing support?

They've been sitting here for about fifteen minutes, one minute past forever. No one is talking or reading the magazines or even making eye contact. They're all looking vaguely at their feet or the walls. Her mom is rubbing the beads of her rosary, whispering with her eyes closed. Katie is holding Felix's hand so tight she's lost circulation in her fingers. She doesn't let go. Katie swallows, and it feels as if her stomach is in the process of turning itself inside out. She thinks she might throw up.

It doesn't help that they're all hungover and have barely slept. Patrick had the night off, and he decided that the eve of Katie's Day of Reckoning called for alcohol. Katie didn't argue. JJ, Pat, Meg, Katie, and Felix went to Sully's early and closed the place. JJ kicked things off with a round of tequila shots. Many, many beers later, Katie vaguely remembers doing shots of Jäger. They all got totally shitfaced.

“This is wicked fun,” says Patrick. “I can see why you guys all signed up to do this.”

No one says anything.

“When we're done here, we should all go for colonoscopies down the hall.”

“You'd like a big hose up the ass, wouldn't you, Pat?” goads JJ.

“Gross,” says Meghan.

“Boys,” her mom scolds without opening her eyes.

“Actually, I do have to take a shit,” says Patrick.

“This is why I didn't bring you to my appointment,” says Meghan.

“There a bathroom around here?”

“Out the door, go left,” says JJ.

Katie watches her mom praying.
Thank you, Mom.
Her dad jumps up, startling everyone. He does a quick dance, a little soft-shoe shuffle, and then throws himself back into his chair. A few minutes later, the waiting room door opens, and Patrick is back.

Then the other door suddenly opens, slicing the air like a guillotine blade rising, and standing before them is Eric Clarkson. His face is serious. Then, seeing so many O'Briens, he smiles. He's still smiling. He wouldn't be smiling if he were about to deliver bad news. That would be sadistic.

Katie's spirit and hangover lift, floating weightless above her for a moment before her memory sinks them back into her body. He doesn't know her test results yet either. The smile has nothing to do with HD. He's just happy to see them.

“Hello, everyone,” says Eric. “Hey, Joe, I like your shirt.”

Her dad nods and smiles. He's very proud of his T-shirts.

“Shall we?” asks Eric, holding the door open.

Katie stands first. Still holding Felix's hand, she follows Eric down the hall, leading the O'Brien family in single file, as if they were a funeral procession or an army marching to the front line. They pile into Eric's office, and the space is too small for this many people. Katie sits in one of the chairs, and her mother takes the only other seat next to her. Everyone else stands, squished and leaning against the wall behind her.

“And I was worried you wouldn't bring anyone,” says Eric.

His office looks pretty much the same as she remembers it. His diploma, the
HOPE
poster, the orchid. She looks over at the whiteboard.

Chromosomes. Genes. DNA. ATCG. CAG.

A genetics 101 lesson not yet erased from an earlier appointment, another innocent soul formally introduced to the simply cruel biology of HD. Everything looks the same, with one notable exception—a framed photo of Eric with his dog and a pretty girl. She's cute. She looks a little bit like Katie. Next to their picture is the gift Katie gave to him last year.

“Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

And never stops at all.”

—Emily Dickinson

She pulls down the top of her T-shirt a smidge to just above her heart and drags her fingers over her new tattoo, the skin still red and itchy. A white feather. Hope. She looks down at the outside of her right ankle. A pink lotus flower. Her other tattoo. Lotus flowers blossom while rooted in mud, a reminder that beauty and grace can rise above something ugly. Something like HD. She was planning on getting only the feather, but the pain of the needle wasn't nearly as bad as she'd expected, so she got the lotus, too. Her anticipation was far worse than the actual experience. Possibly like right now.

She used to think that being gene positive would change everything. If she's positive, it will certainly affect her future. But the future is a fantasy. The present moment is all there is. Today, in this moment, if she finds out she's gene positive, it changes nothing about now. She'll still love the people in this
room, and they'll still love her. She's still moving with Felix to Portland next week. Her bags are packed.

So why does she need to know?

Everyone dies. As her dad would say,
That's the price of playing poker
. Maybe it's an accident or something lethal lurking inside them—cancer, heart disease, Alzheimer's. Katie looks at Eric and his girlfriend, happy in the framed picture, and hopes he doesn't get hit by a bus when he's thirty-five. But who knows? Who knows what genetic fate might be lurking inside Eric, her mom, Felix?

So HD might be the reason she dies someday. She's done with living with the excuse of someday. She's determined to stay focused on the reason she lives now. She loves her family. She loves Felix. She loves inspiring wellness and peace through teaching yoga. She loves herself. Love is her reason for living, and that has nothing to do with HD.

So why does she need to know whether she'll get HD in the future?

She eyes the white envelope centered on Eric's desk. She has a 50 percent chance of being HD positive. A flip-of-the-coin risk. But everything in life is a risk. Moving to Portland, opening a yoga studio, loving Felix. Every breath is a risk. She envisions the quote she wrote on her bedroom wall yesterday before they all went to Sully's and got hammered, knowing the words will be painted over within the week, before the new tenants move in.

“Every breath is a risk. Love is why we breathe.”

–Katie O'Brien

She looks up at Eric looking at her. Here they are. Their third and last date. She could bolt like a bride with cold feet on her wedding day. She could politely say
No, thank you
. She could walk out of this building none the wiser and move to
Portland with Felix. She could be a twenty-two-year-old girl and not know what letters are written in her DNA.

Or she could find out.

If that piece of paper reveals that she's gene negative, she's free of HD. No more worrying every time she drops her spoon. No more panicked dread every time she fidgets in her seat. Her children will never get HD.

The thought of hearing Eric say she's gene positive used to terrify her. The thought became a fear that physically consumed her. But the thought is only terrifying if she chooses to be terrified. The quality of her experience depends entirely on the thoughts she chooses. Reality depends on what is paid attention to. Whether she's gene positive or negative, she's determined to pay attention to living, not dying.

Still clutching Felix's hand, Katie turns and locks eyes with her dad. His eyes go wide and round, his eyebrows hop up and hang there. An HD grimace. Possibly her future face. She reads his T-shirt.
THIS IS HUNTINGTON'S
. And then his eyebrows relax, and there's a reassuring twinkle in his eyes, and without words, she knows what he's telling her.
I'm with you, honey
. This is her dad.

“So, Katie. I have your genetic screening results here. You ready?” asks Eric, holding the envelope, her fate, in his hands.

She squeezes Felix's hand and looks Eric straight in the eye. She takes a deep breath in. So. She exhales it out. Hum. Every breath is a risk. Love is why we breathe.

“I am.”

LISA'S CALL TO ACTION

Dear Reader,

Thank you for reading
Inside the O'Briens
. Through the story of the O'Brien family, I hope you've gained a compassionate awareness for what it feels like to live with Huntington's. I also hope you'll join me in putting that compassionate awareness into action. By making a small donation to Huntington's research, YOU can be part of the progress that will lead to a cure.

Please take a moment and go to
www.LisaGenova.com
and click on the
Readers in Action-Huntington's
button to make a donation to Huntington's research. You'll be taken to an animated Fenway Park and a fun, interactive way to see the impact of your donation. You'll also be able to check the tally, both the number of readers who've contributed and the total dollar amount.

Thank you for taking the time to get involved, for turning your compassionate awareness into action. Let's see how amazingly generous and powerful this readership can be!

Namaste,

Lisa Genova

ACKNOWLEDGMENTS

First and foremost, I am profoundly grateful to the families affected by Huntington's who so openly shared themselves, who entrusted me with their most personal experiences. I spoke with people who have early-, middle-, and late-stage HD, people who are gene positive and asymptomatic, gene negative, and at risk. I spoke with the spouses, parents, siblings, children, and friends of those affected. Many have become my close and cherished friends. I owe my understanding of the complexity of living with this disease to each of them.

Thank you, Cheryl Sullivan Staveley, Kevin Staveley, Meghan Sullivan, Jeri Garcia, Karri Hagler Wilson, Lance Mallow, Kathy Mallow, Robin Renschen, Mary Shreiber, Elise Shreiber, Alan Arena, Lizbeth Clinton Granfield, Rosemary Adamson, Mark Wiesel, Catherine Hayes, Genevieve McCrea, Gail Lambert, Dr. Jeff Carroll, Matthew Ellison (founder of
HDYO.org
), and Michelle Muller. You showed me the humanity that cannot be found in clinical textbooks.

Thank you, Karen Baker, LICSW, MSW, who immediately knew that I needed to meet Cheryl Sullivan. A special thank-you goes to Cheryl. Cheryl, I'm so thankful for all that you taught me about HD, for all the time you spent with me, for inviting me into your home and your family. And beyond the pages of this book, I'm truly grateful for your generous and loving spirit and our friendship. And I'm deeply grateful I had the chance to know your beautiful daughter, Meghan.

Meghan died of juvenile HD in the early morning of Monday, May 12, 2014, at the age of twenty-six. Meghan was a tenacious advocate for HD, inspiringly courageous in her positive attitude, and known for her contagious smiles and huge hugs. She showed me that even in a situation that appears hopeless, love and gratitude are possible. Meghan, thank you for touching my life and countless others' with the way you lived. I think of you every day.

An enormous thank-you to the many health-care professionals who so generously took the time to help me gain an accurate picture of the neurological, genetic, scientific, and therapeutic aspects of living with HD. Thank you, Dr. Anne Young (neurologist), Dr. Steven Hersch (neurologist), Rudy Tanzi (neuroscientist), Alicia Semaka, PhD, CCGC (Canadian Certified Genetic Counsellor), Judy Sinsheimer (clinical social worker), Suzanne Imbriglio (physical therapist), David Banks (behavior specialist), and Allan Tobin (former senior scientific advisor for the CHDI Foundation).

A huge, admiration-filled thank-you to the police officers who helped me understand the day-to-day life of their jobs. When I began writing this book, I knew I wanted to raise the reader's awareness of Huntington's. After all I've learned, I hope this book also generates an appreciation and gratitude for law enforcement officers. Thank you to Officers Daniel Wallace, Richie Vitale, John Quarranto, retired officer Frank DeSario, and Detective Melissa Marshall.

A special thank-you to the Boston police officer who wanted nothing to do with me. Because of him, I met Officer Danny Wallace, who became my daily police consultant, my “pusher,” my muse, and my dear friend. Danny, you gave so much more than I asked for, and this book is infinitely better for all that you contributed. Thank you for meeting me in Charlestown and on Cape Cod, for the ride-alongs, the trips to the stations, for explaining and reexplaining, every rambling, every photo, every e-mail and text, for reading the drafts, and so much more. I adore and admire you and am so grateful that our paths have crossed. I thank my lucky stars all the time that the first officer I met in Charlestown wouldn't talk to me. There are no coincidences, right? Danny, I'm so blessed to know you and call you my friend.

Thank you to the Townies: Jamie Kelly, Jack Sullivan, and Frank and Carol Donlan. After a long and courageous battle with cancer, Carol passed away while I was editing this manuscript. Carol, thank you for sharing your childhood stories with me, for telling me about the neighborhood and the man you loved.

Thank you to Allison Sloan, the wonderful Toonie and senior library associate with the Reading Public Library who spent a day with me, giving me the grand tour—walking through Town, introducing me to neighbors, sharing fun facts both historical and current.

To better understand Katie's life as a yoga instructor, I enrolled in Jill Abraham's Power Yoga of Cape Cod two-­hundred-hour yoga teacher training while writing this book. I completed the two hundred hours and was certified in May, one week before completing the first draft. For what they contributed to Katie's character and the countless ways my own life has been enriched, I am forever and deeply grateful to my fellow yogis and teachers: Jill Abraham, Leigh Alberti, Jed Armour, Katie Briody, Keveney Carroll, Rhia Cataldo, Eric Clark, Victoria Diamond, Andrea Howard, Heather Hunter, Ed Jacobs, Victor Johnson, Kristin Kaloper, Michelle Kelly, Haley King, Kadri Kurgun, Amy Latham, Alicia Mathewson, Terri McCallister, Lauren Miller-Jones, Jessica Riley Norton, Andrea Odrzywolski, Kelley Field Pearce, Heather Pearston, and John Perrone.

Thank you to Susanna Vennerbeck, formerly a dancer for the Boston Ballet, Jennifer Markham, a teacher for the Boston Ballet, Sylvia Deaton, currently in the corps de ballet at the Boston Ballet, and my beautiful cousin Lizzie Green, who attended the Boston Ballet School.

Thank you to my dear friend Greg O'Brien, who shared his love of and many books about his Irish heritage. Thank you to Rose Summers, who shared many great stories about Ireland and growing up Irish Catholic. Thank you to Beth Schaufus Gavin, my beloved Irish friend of thirty years now, who answered all sorts of questions about Irish songs, Protestants, and beer. A wink and a nod to your dad, who inspired the character of Michael Murphy.

Thank you to my amazing assistant, Kate Racette, who accompanied me to Charlestown and made those trips productive, smooth, and fun, who researched all manner of facts and figures for me, and who wears a hundred hats every day to make my writing time possible and my overall quality of life wicked awesome.

Thank you to my brother, Tom Genova, who fielded any and all questions related to Boston sports teams. Thanks again to my brother and to my lovely friend Danyel Matteson for sharing personal stories about their beloved dogs.

Thank you to Larry Lucchino for answering many questions related to the Boston Red Sox and Fenway, for explaining the important difference between a ballpark and a stadium. Thank you to Stacey Lucchino for so generously inviting me to Fenway, for seeing the possibilities in raising urgently needed money for HD research and then unflinchingly rolling up her sleeves. Thanks also to Dave and Lynn Waller for generously jumping in, for contributing your amazing talents to this worthy cause.

Thank you to Ragdale for the magnificent writer's residency and to everyone who made my time there so productive and magical—Jeffrey Meeuwsen, Regin Igloria, Jack Danch, Cynthia Quick, and Linda Williams. My gratitude and love to the generous Forever Om Yoga and Lake Forest community—Sandra Deromedi, Brian Floriani, Areta Kohout, and Jeanna Park.

A loving thank-you to my brilliant and inspiring friend Michael Verde, who generously gave me time and space to write during the Memory Bridge retreat (
memorybridge.org
) at the Tibetan Mongolian Buddhist Cultural Center in Bloomington, Indiana.

Enormous gratitude to Vicky Bijur and Karen Kosztolnyik for their careful and insightful feedback on many drafts. Thanks also to Carolyn Reidy, Louise Burke, Jen Bergstrom, Jean Anne Rose, Jennifer Robinson, Marcy Engelman, Liz Psaltis, Liz Perl, Michael Selleck, Wendy Sheanin, Lisa Litwack, and Becky Prager for supporting this book in such a huge way.

A huge-hearted thank-you to my beloved early readers: Anne Carey, Mary MacGregor, Laurel Daly, Kim Howland, Kate Racette, and Dan Wallace. And then Cheryl Sullivan and Jeri Garcia. Thank you for reading, for cheering me on, for your feedback, love, and support. Cheryl and Jeri, thank you for having the courage to read this story, for trusting me, and for giving me feedback. I love you both.