You'll Miss Me When I'm Gone
3.5/5
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About this ebook
“Dark and thought-provoking.” —Publishers Weekly
“A stunning debut.” —VOYA
A poignant, lyrical debut novel about twins who navigate first love, their Jewish identity, and shocking results from a genetic test that determines their fate—whether they inherited their mother’s Huntington’s disease.
Eighteen-year-old twins Adina and Tovah have little in common besides their ambitious nature. Viola prodigy Adina yearns to become a soloist—and to convince her music teacher he wants her the way she wants him. Overachiever Tovah awaits her acceptance to Johns Hopkins, the first step on her path toward med school and a career as a surgeon.
But one thing could wreck their carefully planned futures: a genetic test for Huntington’s, a rare degenerative disease that slowly steals control of the body and mind. It’s turned their Israeli mother into a near stranger and fractured the sisters’ own bond in ways they’ll never admit. While Tovah finds comfort in their Jewish religion, Adina rebels against its rules.
When the results come in, one twin tests negative for Huntington’s. The other tests positive.
These opposite outcomes push them farther apart as they wrestle with guilt, betrayal, and the unexpected thrill of first love. How can they repair their relationship, and is it even worth saving?
From debut author Rachel Lynn Solomon comes a luminous, heartbreaking tale of life, death, and the fragile bond between sisters.
Rachel Lynn Solomon
Rachel Lynn Solomon is the New York Times bestselling author of Today Tonight Tomorrow, The Ex Talk, and other romantic comedies for teens and adults. Originally from Seattle, she’s currently navigating expat life in Amsterdam, where she’s on a mission to try as many Dutch sweets as possible. Learn more at RachelSolomonBooks.com.
Read more from Rachel Lynn Solomon
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Reviews for You'll Miss Me When I'm Gone
50 ratings4 reviews
- Rating: 5 out of 5 stars5/5Adina and Tovah Seigel are fraternal twins about to turn eighteen years old. Eighteen is supposed to be a lucky number in Hebrew, but to the twins the number eighteen is anything but lucky. In fact, it is quite the opposite. Turning eighteen means they can now take the genetic test to find out if either one of them inherited their mother’s gene for Huntington’s Disease. When one sister’s test comes back positive and the other sister negative, it impacts their lives in different ways.
Adina and Tovah do not have the best of relationships. At one time they were very close, but they had a falling out. Now, with the test results they both try to put the past behind them and start anew. They both have a lot of issues they need to work through and their relationship is shaky at best. Like all sibling relationships, there will always be arguments and times where you will not get along. You can see that with Adina and Tovah. I can see that with my own sisters. We fight and make up and fight and make up again. Adina and Tovah’s relationship is realistically portrayed. Are they both likeable? Yes and no. They were both flawed and complex characters. They both have moments where you either love or hate what they are doing.
Outside influences also made me see the sisters in a different light. Adina is in love with her viola tutor who is a few years older than her whereas, Tovah likes a boy from her school. The boy/girl relationship dynamic between the two sisters was so different. Adina is the siren and she uses her looks to get what she wants. Although realistic, it really made me feel sorry for Adina that she had to use her looks and sexuality to get the guy that she wants. Tovah, on the other hand, is inexperienced and never had a boyfriend. She is uncomfortable in her own skin and dresses the part to hide her body. In this instance, I felt I could relate more with Tovah as she seemed the more down to earth sister. Both relationships were so different and one of them even toxic.
Since the genetic test results have come in both sisters have to come to terms for what this means and how it is going to impact both of their lives. The both see what their mother is going through and as a whole how it is impacting their family. Huntington’s Disease is a genetic disease that affects the brain’s neurons. Symptoms usually occur in your forties and fifties, but can occur even earlier. Imagine living with this fear of not knowing when your own body and mind will betray you….of not being able to function…of dropping things, having mood swings, stumbling and eventually not even being able to take care of yourself. I can only imagine what that would feel like to know in ten or twenty years or maybe even sooner my life is going to change and not for the better. You can see the turmoil both Adina and Tovah experience because of these results. How guilty one must feel to know their sibling was not spared. How their life is going to continue while their sibling worries about every time they drop a plate or stumble and if it a sign of early symptoms progressing.
There is one aspect that I really loved that the author, Rachel Lynn Solomon, took a huge risk on and that is thoughts of suicide. Honestly, it was beautifully done and so real. I am so glad the thought of suicide was not left out because it is an emotion some people think about especially when they are sick or know they are going to die. It is a really hot topic and not everyone will agree with the right to die. Personally, I would never want to be a burden to my family and if I had a disease like Huntington’s at some point I would hope my state had the option for assisted suicide. I think you should be able to live your life the way you want to and be able to die on your own terms. Again, this is just my opinion. I accept that not everyone will agree with me. I also know this topic can be a trigger for some. So, this is the only warning I have for this story. Just know, it is realistically portrayed.
Religion is also at the forefront of the story. They are both immersed into their culture, being of Israeli background. Faith is an underlying current throughout their story. I felt that I learned quite a bit about being Jewish without it being shoved down my throat. You also see how both Adina and Tovah practice or not practice their faith in Judaism. Both sisters have different views on religion and how they want to live their life devoted or not so devoted to God. How they both relate to their Jewish Identity was just fascinating.
I am so surprised that I’LL MISS YOU WHEN I AM GONE is a debut novel. It just feels like Rachel Lynn Solomon has all these great books behind her and she knows how awesome she is as a writer. I mean she is a fantastic writer regardless, but for a debut novel to be this great, to pull you right into the story and make you fall in love with all of the characters and to take on such a heavy and emotional heart wrenching topic is nothing more than phenomenal. What an outstanding debut! I can not praise this story enough. I am really looking forward for more books/stories from this author.1 person found this helpful
- Rating: 3 out of 5 stars3/5I started reading this novel many years ago when I got to read an ARC excerpt. It was always on my radar to get back to it (and the author) and when it was finally available at my public library it got to the top of my TBR stack.The main plot is of very driven fraternal twins, Adina and Tovah, deciding whether or not to find out after their 18th birthday if one, both, or neither have inherited from their mother the gene responsible for Huntington's disease.I should have realized from that excerpt, but didn't, that this was going to be a very heavy, somber read on family relationships. One of the teens has a very destructive/manipulative personality which sets up some situations. I didn't really like that twin's character at all. But the story itself was intriguing.I've ready several Rachel Lynn Solomon YA novels and loved them and enjoy her writing. I'm glad that the ARC of this novel put her on my radar in the first place.
- Rating: 4 out of 5 stars4/5This is an interesting young adult book where fraternal twins Adina and Tovah come to terms not only with their mother's declining health due to Huntington's Disease, an inherited and fatal condition, but with the potential that they could also develop the disease. When they turn 18, they both are tested, with different results. Their relationship had already been strained, but this diagnosis widens these rifts. This is an compelling look at family dynamics made worse with illness, both in the present and in the future.
1 person found this helpful
- Rating: 3 out of 5 stars3/5I am not a huge fan of Morgan Matson, but so many people have this book in their top reads of last year. I actually tried picking this up several times, and I could not get past the first chapter. I was finally in the mood to give it another try.Based on Andie’s family, it was not realistic to think she would become a dog walker. Her father (regardless if there was a scandal going on or not) would have used his connections to help her get into the camp or find her a summer job. I started to make a little more sense when you find out she never even told her dad what happened right away.I was surprised when Andie and Clark did not have a great first date. It was refreshing! Everything you read always has insta-love, so I liked that the romance was not perfect right away.I did not like how Andie treated her father in the beginning. I did enjoy seeing them come together and begin healing from the loss of Andie’s mother. There were some emotional moments which hit me a little harder since I lost my father at a young age.Overall, I was surprised with this. I enjoyed it much more than I thought I would.
Book preview
You'll Miss Me When I'm Gone - Rachel Lynn Solomon
Fall
One
Adina
I USED TO THINK HIS touches meant nothing. We brushed arms in the hallway of his apartment, and I let myself believe the space was simply too narrow. Our hands tangled and I figured it was because we reached to turn the sheet music at the same time.
Then his touches started to linger. I could feel the warmth of his palm on my shoulder through the fabric of my dress after he told me I’d played beautifully, and I convinced myself of something else: he has touched me far too many times for it to be happening by accident.
Today I will make it happen on purpose.
My bus turns onto his street. He lives on a hill claimed by two Seattle neighborhoods, Capitol Hill and the Central District. This hill and I, we go way back. I walked up it the year of the snowstorm when the buses stopped. I slipped down it once, skinning my knee to save my viola case from smashing to the ground. Arjun saw it happen from his fourth-story window, and he rushed down with a Band-Aid with a cartoon character on it. He explained the Band-Aids were for the little ones,
his younger students. It made me laugh, made me forget about the smear of my blood tattooed on the concrete.
I mutter thank you
to the driver as I step off the bus, my boots landing in a puddle that splashes water up my sweater tights. It’s the first good rain of the fall, the kind that pummels windows and roofs, making a house sound like it’s preparing for war. It is sweet, fresh, alive. I’ve been waiting for it all month.
Arjun buzzes me inside, and I press the faded elevator button between numbers three and five. By the time the doors swing open, my hands are damp with sweat. To relax, I play a Schubert sonata in my head. I’ve hummed eight measures before I feel calm enough to see him.
Adina! Hello,
Arjun says, pulling the door wide. I was starting to think you got lost on the way up.
Elevator was stuck,
I lie. My lungs feel tight, like I sprinted up the hill.
Old building. Happens to me all the time.
He grins, brilliant white teeth between full lips. Ready to make some beautiful music?
Always.
A collared shirt peeks out the neck of his burgundy sweater, showing the lines of his broad shoulders. The sweater looks so soft, makes me imagine what it would feel like to touch him on purpose. I could do it now. But I don’t have the courage yet. The sight and sound of him have turned my muscles liquid.
I follow him to his studio, where portraits of composers, all grim and serious—possibly because most of them were dying of typhoid or syphilis—stare down at me. With trembling hands, I unbuckle my viola case and arrange my music on the stand in front of me. Arjun sits in the chair opposite mine. The ankles of his pants inch up, exposing his argyle socks.
Our first lesson was three years ago, but it wasn’t until I heard him play that he became someone I think about every night before I fall asleep. Dreamed about. I try very hard to forget that he is twenty-five, my teacher, and entirely off-limits. Sometimes, though, when he looks at me after I finish playing, I swear he feels the same pull.
His lips tip into a grin. Don’t make fun of me, but I had studded tires put on my car last weekend.
No!
I gasp.
He shrugs, sheepish. Have to be prepared for the worst, right?
I shake my head, laughing, and relax in my chair. Each winter he prepares for an apocalyptic snowstorm, since he’d never seen snow until his first winter in Seattle. It doesn’t snow in Gujarat, the state in India where he grew up, or in New Delhi, where he played in the symphony.
It’s September,
I say. You’re absurd. Besides, we probably won’t even get snow this year. We only got, what, half an inch last year?
And it shut the entire city down! We’ll see who’s absurd when you’re stuck in your house for days and you haven’t stocked up on nonperishables.
You’d share your protein bars with me.
Maybe,
he says, but he’s smiling. He snaps his fingers. Do you remember the New Year’s Eve symphony showcase I told you about, the one for musicians under twenty-five?
I nod and scoot to the edge of my chair, my heart hammering allegro against my rib cage. The showcase will feature the best soloists in the Pacific Northwest. I play in the youth symphony, but the viola is typically a background instrument. Rarely do I get the spotlight to myself.
It turns out,
he continues, that the director is a friend of mine. I sent him some clips of you playing, and he was quite impressed. He can fit you in for an audition Friday after school, if you’re interested. Three thirty.
I do some quick mental calculations. If the buses aren’t delayed, I should be able to make it home by sundown. By Shabbat. And even if I know the audition is more important, my family doesn’t have the same priorities. In their minds, tradition beats everything.
Are you serious? Yes, I’m interested. Thank you!
This is the first genuine happiness I’ve felt in weeks. I turn eighteen this weekend, a birthday I have been dreading, and the genetic test is a couple days after. That test is the reason I need to make a move with Arjun now, before everything could change. Before I find out if the disease that is stealing the life from my mother will do the same thing to me.
Test,
a word I’ve always viewed with mild annoyance, doesn’t have a fraction of the weight it should.
You deserve it.
His dark eyes hold mine, replacing thoughts of the test with images of what we did last night in one of my dreams. Have you decided where you’re applying yet?
Peabody, Oberlin, New England, the Manhattan School of Music.
My father, who unlike my mother doesn’t believe someone can make a living off music, has begged me to apply to at least one state school. Just in case, he says. In case what? In case I fail spectacularly at being a musician? Conservatory has been my path since fourth-grade orchestra, when I fell in love with the mellow, melancholy sound of the viola. It was less obvious than the violin, less arrogant than the cello. Bass I’ve only ever seen played by guys with huge egos, as though the instrument is inversely proportional to penis size and they’re trying to make up for their shortcomings. Each year my orchestra classes shrank as kids discovered they liked other things more than strings. And each year I was the one my teachers asked to play solos—never mind that violas don’t usually solo. I vowed to become one of the first to do it professionally.
Solid choices,
Arjun says.
And Juilliard, just for the hell of it. I’m still working on the recordings.
Arjun and my school orchestra teachers will write my letters of recommendation. To my other teachers, I am simply a body in a seat. I’m always waiting to stop pretending to take notes on Chaucer or entropy or the quadratic formula so I can go to orchestra, or on Wednesdays, to go to Arjun.
You’ll get an audition. I know you will.
I pull at a loose thread on my tights, exposing a triangle of skin. My nerves unravel too many pieces of clothing. The truth: conservatory applications will have to wait until my test results come back. Right now, the uncertainty of it all is paralyzing.
Arjun pages through his music as I get to my feet, positioning the instrument under my chin. He likes his students to stand while playing so we are always performing. I warm up with scales, dragging my bow along the strings in smooth, fluid motions. Then I move on to Bach, Mendelssohn, Handel. Soon my feet are rocking back and forth, my fingers flying up and down the instrument’s neck, the room full of sound that tugs at something deep in my chest. I breathe in minor chords, out major chords.
Sonatas and concertos tell stories. They make you feel every possible emotion, sometimes all within a single piece. They’re nothing like three-minute pop songs with predictable patterns and manufactured sounds. They are joy and tragedy and fear and hate and love. They are everything I never say out loud.
Your C string is a little sharp,
Arjun says after one piece. Linger on that last note for a few more seconds,
he says after another. Every few bars, I steal a glance at his face. The looks he gives me are all fire, warming me down to my toes.
After I play my final piece, Debussy’s La Fille aux Cheveux de Lin,
translated in English as The Girl with the Flaxen Hair,
Arjun stays silent. It is a delicate, emotional prelude. The flaxen-haired girl is a symbol of innocence.
I love irony.
I put down my bow and lay my viola in my lap. His eyes are half closed, dreamy, like he wants to stay inside the song for a while longer before rejoining the real world.
Nearly a minute passes before he says, That was incredible. Flawless.
I practiced a lot.
Three, four, five hours a day, except on Shabbat, of course.
It shows.
The rare times I’ve heard him play, he’s been flawless too. Arjun’s hand is on the desk, and before I can let myself overthink it, I cover it with mine. His skin is so warm. My hands are always ice; my twin sister, Tovah, and my parents make fun of me for it. I have dead-person hands, they like to joke. Even in the summer, even when I’m playing viola, they never heat up. But if my hands are too cold now, Arjun doesn’t say anything.
So I take a deep breath and lean in. I want to bury my fists in his sweater and wrap my legs around his waist and push our hips together. I want to forget everything happening at home, the way Tovah seems to do so easily. But I restrain myself. I simply bring my lips close to his, waiting for him to move the last inch. I imagine he would taste like all decadent things you aren’t supposed to have too much of: tart cherries, espresso beans, wine the color of rubies I once saw in his kitchen. My adrenaline spikes, anticipating the rush that comes with doing something you’re not supposed to do and getting away with it.
Something I’m well versed in when it comes to guys who are older than me.
Suddenly he pulls away. A miniature orchestra inside my chest strikes an ominous minor chord. I’m seriously considering moving in again when—
Adina.
His accent, the one I love so much, clings to my name like it belongs there. Like that’s the way my name was always meant to be said. This . . . You know it can’t happen. I’m too old for you, and I’m your teacher, and . . .
Any other reasons get lost in the wave of shame that begins to turn my face hot.
His words crash and explode in my skull, making word confetti. Making me feel tiny and stupid and worst of all, young.
I—I’m sorry. I . . .
I thought you’d kiss me back? How could I have gotten this so wrong? I was so sure. I was so sure he wanted this too.
His lips make a tight, thin smile. A smile that says, Hey, it’s okay,
but nothing is okay. I am going to combust. I have never been this embarrassed in my life. He won’t meet my eyes, and his hand drops to his lap, leaving mine cold, cold, cold.
I should go. I’ll go.
I pack my viola as fast as I can. Suddenly I’m fourteen years old and in Eitan Mizrahi’s bedroom. Except that time, I got what I wanted: I was able to change his mind.
That’s probably a good idea,
Arjun says to the floor. Clearly there’s no changing his mind.
As I race down his hallway and into the elevator, my heart, which swelled when I laid my hand on his, shrinks to the size of a pea. Maybe it even disappears completely. It occurs to me he might be so uncomfortable that he’ll drop me as a student. Give up on me. I’d have to find a new teacher, and no one understands my music the way he does.
It’s not until I get back on the bus that I wonder why, if he was so eager to shut me down, it took him so long to move his hand from mine.
Two
Tovah
I USED TO THINK BEING a twin meant I’d never be the center of attention. That I’d always share the spotlight with my sister or fight for control of it. For a long time, I didn’t mind sharing. I hid behind Adina while others praised her for her music, her poise, her looks.
Then my shyness mutated, and I started wanting to be seen too. We tried to share the spotlight until she got jealous. Until something shattered our entire family, and in the aftermath she ruined the precarious balance between us. Turned us into two girls who share some DNA and nothing else.
Tomorrow, when we turn eighteen, Adi and I will take a genetic test that tells us whether we’ve inherited our mother’s Huntington’s disease, the asteroid that knocked our family out of orbit four years ago. The black hole slowly swallowing her up.
Tomorrow I take the next step in knowing whether it’ll one day swallow me, too.
But tonight I skate.
Lindsay whizzes by, black hair streaming behind her. Four years on the track team have made me somewhat athletic, but I don’t have much grace. I never know what to do with my arms.
Have you noticed,
I ask Lindsay when I catch up to her, that we’re the oldest ones here?
There are two other birthday parties at the rink tonight. Mine is the only one that doesn’t require parental supervision.
Considering I’m the same size as most of them, I was feeling like I finally found my people.
At four ten, Lindsay’s more than a half foot shorter than I am. She wears tiny T-shirts and matchstick jeans and carries a bucket of a purse the size of her torso. Admit it. You’re having fun.
It was Lindsay’s idea to have my birthday here, and I’m grateful for the distraction. Great Skate is a relic from the 1980s. Neon orange carpet in the dining area, strobe lights, outdated music collection. It smells like foot spray and fryer grease. Adi and I spent birthdays here as kids, eating oily pizza and hoping the guys we liked would ask us to skate with them. At that age, holding a guy’s clammy hand while Aerosmith’s I Don’t Want to Miss a Thing
played from the rink’s scratchy speakers was the most romantic thing I could imagine.
I’m . . . trying,
I say after grappling for the right word.
Though my sister and I ignore each other most days, Great Skate isn’t the same without her. If no one asked us to dance during couples skate—or more accurately, if Adi didn’t like the boys who inevitably asked her—we’d glide around the rink with our arms linked, pretending we didn’t care. And after a few laps, we didn’t. We were the independent Siegel sisters! We didn’t need boys.
We slow down as we approach Lindsay’s boyfriend, Troy, and his friend Zack, both wobbling on their skates near the rink entrance. Lindsay, Troy, and I are proud AP kids who’ve spent most of high school preparing for college. Advanced classes, student council, after-school sports, and as many other extracurriculars we can squeeze in. When Lindsay started dating Troy at the beginning of sophomore year, Zack, whose only AP class is Studio Art, joined our group.
Given what this birthday means, I hoped tonight would be just Lindsay and me, but I’m used to sharing my best friend with Troy. While there’s nothing wrong with him, sometimes I want to be selfish. I’m just not brave enough to tell her.
Lindsay drags her toe to stop and tugs on Troy’s Seahawks sweatshirt strings. I can’t tell if you guys are pathetic or adorable.
Pathetic,
Troy grumbles. That group of fourth graders has lapped us four times. I think I’ll stick to writing about others’ athletic achievements.
Troy’s the school newspaper’s sports reporter, and he can rattle off statistics about all of Seattle’s teams. None of them ever seem to be winning.
I prefer adorable.
Zack wobbles and nearly loses his balance. His wavy russet hair falls in his face, and he has to grab the wall for support. Nailed it.
Have you been finger painting?
I ask, gesturing to his hands. His knuckles are smudged blue and yellow.
Zack examines them. Grins like he’s just realized he’s a mess. It’s mixed media, and I happen to be using my fingers.
Sounds like finger painting to me.
"That’s because you’re not an ar-tiste like Zack is, Tov," Lindsay puts in.
Hardy-har. Got any big plans now that you’re eighteen?
Zack says. "You can pierce or tattoo anything. Vote. Go into an adult store." His mouth quirks up when he mentions this last one, and when his thick-lashed hazel eyes catch mine, I feel my cheeks grow warm.
I’ll be keeping it pretty tame,
I say. He doesn’t know what my actual, life-changing turning-eighteen plans are.
A group of five girls skate by with arms locked around one another. Don’t break the chain!
one of them shouts, and the others giggle.
Oh, to be nine,
Troy says in a mock-wistful tone. Those halcyon days when we didn’t know what integrals or derivatives were . . .
Don’t remind me,
Lindsay says. I have at least three hours of AP Calc waiting for me at home. And about a trillion college essays.
This is what AP kids do when we’re not in school: talk about school.
I bet Tovah’s already finished her college apps,
Zack says.
Even in AP land, I’m a shameless overachiever. I have no problem embracing it. I love when everyone begs to peek at my meticulous study guides or when I’m the first person in class to turn in a test.
The one that matters, yes. I sent it in last week.
Johns Hopkins University in Baltimore has been my goal since seventh grade, when I went to a summer program there for girls interested in science and medicine. My favorite professor was a surgeon who let us watch an open-heart surgery, and while some of the kids shut their eyes, I was riveted. I’d always loved science class the most, but this—I was watching her physically fix someone. It felt powerful. Important.
Since then I’ve shadowed as many local doctors as I can, and I volunteer at a Seattle hospital. Because I applied early decision, I’ll hear back in December. Biology program at Johns Hopkins, and then, if all goes well, med school there too. The next five to ten years of my life perfectly planned out.
I bow down to you.
Zack attempts to do so and almost topples over again.
The sight of this nearly six-foot-tall guy stumbling on skates tugs at my heart. Makes it race faster that its usual sixty bpm. My mind, in all its infinite logic, reminds me this crush can’t become anything more than that. My future is too much of a question mark to drag someone else into my life.
Textbooks and exams don’t have emotions. They’re much safer.
The music stops midsong, and the DJ booms over the speakers: Helloooooo, and thanks for coming out to Great Skate tonight! Everyone having a grrrrrreat time?
All the kids yell back that yes, they are.
I can’t hear you,
the DJ taunts in that way all announcers love to do, and we all bellow back, though Zack rolls his eyes at me. We have a few birthdays here tonight. Can Sienna, Nathan, and . . . Tovah come up here?
He hesitates before saying my name, the way most people do when faced with an unfamiliar word. It’s not hard to pronounce, but I don’t like how he utters it: like he’s questioning it.
I glare at Lindsay. You didn’t.
She tries to make her pale-green eyes innocent. Fails. Get over there, birthday girl,
she says, laughing as she gives me a push.
I despise you,
I tell her before skating to the middle of the rink along with the two kids, who blink up at me like I’m, well, an adult at a skating rink full of children. I grind my teeth—my worst habit—and cross my arms, wishing I could shrink to the size of a third grader. My sister, who prefers the company of string instruments to people, would hate it even more.
How old is everyone turning?
the DJ asks.
Lindsay’s filming a video on her phone. A playful smile bends Zack’s lips, which I’ve imagined kissing only when I feel like torturing myself.
I’m ten!
yells Nathan, and Sienna one-ups him with, Eleven!
I’m, uh, eighteen,
I mutter, which gets a few laughs and gasps from the kids.
Eighteen. It’s supposed to be a lucky number. Hebrew letters have numerical value, and the word chai,
meaning life,
is spelled with two letters that add up to eighteen. It’s a word we toast with—l’chaim!
—and carry around on necklaces. Since my mother’s diagnosis, eighteen has meant something different. It doesn’t mean luck or life. It means the opposite. The worst thing that could possibly happen, multiplied by eighteen, raised to the eighteenth power.
I don’t know the Hebrew word for that.
The DJ leads everyone in Happy Birthday,
and I suffer through thirty more seconds of humiliation. As I skate back to my friends, the DJ says, Now it’s time for you to find that special someone for our couples skate.
The lights turn red. Seal’s Kiss from a Rose
starts playing, though none of us are old enough to remember when it was actually popular. If it ever was. My taste is more nineties grunge, thanks to my father’s lifelong Nirvana obsession. No one else in our family can stand Kurt Cobain’s growl or distorted guitar.
Tonight the couples skate fills me with more dread than it did when I was twelve. Lindsay and Troy are already slowly circling the rink. The kids pair off, their nervous laughter mixing with Seal’s velvety vocals. I envy their naive confidence.
Zack’s gaze meets mine. His eyebrows lift. My heart plummets.
I’m going to take a break,
I say quickly. He can’t ask me to skate with him—because I can’t say yes. Before he can reply, I clomp off the rink.
Before entering my house, I kiss my fingertips and touch them to the mezuzah on the doorpost.
My parents are watching an Israeli movie in the living room, subtitles on for my dad’s benefit. Adina and I speak Hebrew with our mother, who was born in Tel Aviv and lived there until right after her mandatory military service. We call her Ima and our father Aba. He’s American and not quite fluent in Hebrew, though he’s been taking classes for years.
Yom huledet sameach.
Ima wishes me a happy birthday as Aba pauses the movie. Her head jerks upward. Twice. Three times.
It doesn’t look too unusual unless it happens thirty or forty times a day.
Huntington’s makes her body do things she can’t control, makes her temper unpredictable, makes her forget names and conversations. I never know if something I say will make her furious, or if she’ll remember tomorrow where I went tonight. Or if one day she’ll forget my birthday altogether.
Todah,
I thank her.
Eich ha’yah?
Aba asks in stilted Hebrew.
About as fun as skating with a few dozen small children can be.
He smiles, and then an alarm on his phone beeps. Time for kinuach,
he says.
A while ago Ima insisted we call her pill regimen dessert
so she wouldn’t sound as sick. There’s no cure for Huntington’s, but the meds reduce her symptoms. Mood stabilizers and antidepressants, plus antinausea pills to combat the side effects.
I was fourteen when Ima was diagnosed. She’d been acting strangely for a while, dropping cups and plates, forgetting conversations we’d had. Yelling at us when she’d only ever been gentle. Huntington’s is a genetic disease that slowly kills the brain’s neurons. There’s no way to tell when symptoms will appear or how fast the disease will progress, though usually people start showing signs in their forties or fifties. Sometimes before then. People gradually lose the ability to walk and talk and swallow food. In the final stages of the disease, they’re confined to beds in assisted living facilities. Time between onset and death is ten to thirty years, and there’s no cure.
Though her symptoms aren’t grave now, the reality that this disease is fatal has only started to sink in over the past few years.
I leave my parents to their movie and head upstairs to my room. When I flick on the lights, I jump: my sister’s standing in the middle of the room like she’s haunting the place.
You scared me,
I accuse, and she rolls her shoulders in a shrug that suggests she’s not actually sorry. I swipe an orange plastic case off my desk and shove in the night guard my dentist makes me wear for bruxism: grinding my teeth too much, especially while sleeping. It’s caused by stress, but my hectic schedule will have been worth it when I’m accepted to Johns Hopkins.
I wanted to talk to you.
She hasn’t been in my room in a while. With the light on, she scrutinizes the walls, the photo collages of me and Lindsay and a few other friends. My shelves overflow with medical books and Jewish texts. A printout of next week’s Torah portion, Ha’azinu, on