Rachel Simon's Blog

It’s the weekend after Thanksgiving. While most people had large family gatherings with turkey, mashed potatoes, and pumpkin pie, I took my sister Beth to see Puss In Boots, followed by a trip to a diner for our holiday dinner. It was a nice, peaceful, private way to say thanks for a thrilling, non-stop, very public year.

In fact, the year has been so non-stop that I haven’t posted a new blog since August. It’s been so long that readers of this blog have gotten in touch, saying, “Where have you been?”

In the interest of answering that question, I’m posting a photo journey through the last four months. It won’t cover everything, but will touch on many of the important episodes and people, and will give a sense of all I have to be grateful for. (And when I mention giving talks, I’m mostly referring to talks related to my novel The Story of Beautiful Girl, though occasionally I also spoke about my memoir, Riding The Bus With My Sister.)

If you’ve ever wondered what it’s like to find out that your book has gotten onto the New York Times Best Seller list, you’ve probably imagined fireworks, or parades, or, at the very least, a singing telegram.

You probably didn’t imagine this.

It was a week ago, a Wednesday evening. My novel, The Story of Beautiful Girl, had been out for two weeks. I’d just gotten through yet another wildly busy day, where my computer screen resembled a video game in which I was besieged by a space armada – also known as emails, Facebook messages, Tweets – and I’d spent the day taking care of each onslaught before the next one surged toward me.

My husband Hal came home at about 5 PM, and despite the ceaseless rush of work, I decided to take a break. He made himself his usual early evening coffee and we retreated to the living room. There, I indulged in simply relaxing – petting the cat and meandering through topics – until he’d finished his cup. I kept thinking I should return to work, but the simple deliciousness of lolling about and slowing my thoughts from light-warp pace to that of an ordinary conversationalist who contemplates, muses, pauses, trails off, tells stories, and listens to silly jokes won me over. I stayed in the living room for an hour and a half, enjoying the gentleness of every moment.

Finally, at six thirty, we decided to start making dinner. “Let me just check the email quickly,” I said, going upstairs.

“I need to take care of something in my studio anyway,” Hal said, following me.

He headed up to his third floor studio, I went into my study.

Needless to say, twenty messages awaited. To my surprise, three were from key business people – my editor, my agent, and my publicist – and they all had the same subject line: “Best Sellers List for 5/29/11.”

Surely this couldn’t be, I thought. I opened my editor’s email.

“Omg! BG hits the times list at #30!!!!!! Huge congrats all around!!!!!!”

To which my agent replied, “Fantastic!!!”

To which my publicist said, “Amazing! Yay!”

Was I reading this correctly? Could I be imagining this? The book had been out only two weeks! I knew it was selling out at bookstores and on amazon.com, and had gotten onto the Indiebound Bestseller list for independent bookstores. But I had no idea we were even nipping at the heels of the Times list.

I didn’t want to call out to Hal until I felt more certain. I set my hand on my desk to steady myself, then realized there was an attachment.

I opened it up. And read down the lines to #30. And there it was. My book!

I started to cry.

And then I wanted to grab the phone and call everyone in the world! But first, I had to tell my husband.

“Hal?” I asked. “Can I show you something?”

“Wait a minute,” he called back. “I need to get out of these work clothes.”

He came down the stairs to the second floor, went into the front room, opened up his cabinet, and proceeded to take about five thousand years to change into his jeans – during which I had to exercise extreme restraint so I wouldn’t burst, jump up and down, or start screaming.

Finally he came into the study. “Look,” I said.

And then it was real. Then, with someone else’s eyes on it, I knew it was real.

Later I learned that my editor had gotten a call from the Times two days earlier, saying they were tracking the book. She decided not to tell me in case nothing came of it – but she was anxiously awaiting the Times‘ email about the list, which apparently comes on Wednesdays right at the end of the day. Unfortunately, she’d already left the office before it arrived. Only at six o’clock, when she was in a cab with a friend, zooming across Manhattan, was she able to check her email. There was a message from the Times – but she couldn’t read the attachment on her phone! Her friend whipped out her iPad, and said, “Forward the message to me.” My editor did, and then, in a ridiculously 21st Century way, she looked at her friend’s iPad while the forwarded email popped up. They opened the attachment. “No…” they said, going through the list. “Yes!!” they said, suddenly seeing it.

But, being as much of the 20th as the 21st century, my editor didn’t have my number programmed into her phone. So she couldn’t call. And my agent was running off to the theater, so she couldn’t call. And my publicist was similarly committed – the publishing industry is in New York, after all. Thus I learned via email, alone. No singing telegram. No fireworks. But once I shared it with Hal, I was able to give myself over to joy and happiness. We put our arms around each other and laughed, giddy with disbelief.

In the week since then, I’ve savored the deliciousness of calling my book a New York Times Best Seller. I’ve loved knowing that a book that gives voice to those who can’t always speak for themselves has made such a mark – and so quickly. And I’ve delighted in the happiness that this news seems to give to everyone I share it with.

But I can’t say that Hal and I went out to celebrate. This wasn’t, though, for lack of the desire to make our own parade. It was because I just couldn’t resist telling everyone I could think of – right away! So Week 3 began with me sending out emails, Facebook posts, and Tweets, and getting a few hundred responses in return.

There was other news, too.

Vanity Fair gave The Story of Beautiful Girl a mention in their Hot Types column.

Bookreporter.com reviewed The Story of Beautiful Girl, saying, “Readers will grow outraged by the atrocities that actually happened not so very long ago. Even more important, however, is the way in which Simon utilizes the inner monologues of Lynnie and Homan to enhance their humanity in a much-needed and too-rare way. Seeing inside their heads, coming to know them as thinking and hurting and loving people, comes far closer to knowing the disabled and empathizing with them than most readers ever would on their own. Crafting a sweeping, decades-long love story between two such characters does as much for raising awareness and enhancing compassion as any exposé ever could.”

She Magazine, which is based in the United Kingdom – where The Story Of Beautiful Girl will be released next week (with a different cover!) – named it their Book Of The Month. They also said in a review, “One of those moving novels that stays with you long after you’ve turned the last page….This beautiful novel then follows the lives of the four main characters and is packed with stunning descriptions and an astute understanding of the frustrations of living with a disability and being totally misunderstood. A truly eye-opening tale.”

My local paper, the News Journal, gave a nice summary of recent developments, titled “Wilmington Author’s New Book Wins Plaudits.”

And reports kept coming in from friends.

Betsy in New Hampshire reported that it had sold out at her local store.

Pam in Seattle reported that it was on display in the front of Elliott Bay Book Company. She and another friend, Laura, posted photos on Facebook.

Peter said he saw a fabulous display in the Memphis, TN airport.

Liz, who attended Book Expo of America in New York City, snapped this photo of a display at my publisher’s booth.

But the news was not the sum of my week. I also had people to see, events to do – and a whole other wonderful milestone to celebrate.

Some of the people I saw were friends who’d attended one of my first few events but had to leave before they got through the book signing line. I met up with them at their houses or cafes, signed their books, and had the chance to catch up in lovely conversations.

Others were friends who just appreciated a visit, and whose company I enjoy. One was my friend and former neighbor Kathy, who is in the middle of treatment for cancer. I always liked talking with Kathy when we ran into each other on the sidewalk, and even though she now lives in a different part of town, I try to see her whenever I can. We laughed about politics, talked about mutual friends, and shared hopeful feelings about her ultimate recovery.

Another was my brother and his son. My brother, who has recently gone through many trials of his own, showed me the bouquet of flowers he buys as a treat for himself once a week. My nephew, who plays drums and loves punk music, showed me record albums he’s particularly fond of.

And another was Hal. We did indeed have a celebration – for our tenth anniversary. For this occasion, he renamed himself yet again. No longer was he Dr. No, as he’d become the first week the book was out. This time, he was Count Goofinoff, to ensure that we would spend the entire day goofing off. And we did!

But first, I’ll show you photos for the event I did this week, a reception at my friend Michele’s house. If you’ve been following this blog, you might remember Michele because she’s my hair dresser, and, last summer, she gave her newly adopted pet bird to my mother and her husband, who’d lost their beloved birds not long before and were deeply in need of another feathered friend. Michele’s generosity has given them much pleasure since. (You can read that earlier blog here.)

When Michele read The Story of Beautiful Girl, she immediately asked if she could hold a reception in her house. She would invite her book club and friends and ask everyone to show up with a book. All I’d have to do would be to arrive, mingle, do a short talk, and sign books. Her generosity won me over just as much as it won over my mother and her husband last summer.

Michele held the event this past Sunday night. Almost thirty people showed up, covering a wide range of professions and interests. This blog ends with some pictures of that special evening, followed by the photo-story of our goofing-off anniversary.

I send this all out to you as I get ready for yet another event tomorrow: a keynote at a conference, followed by a reception and book signing for the public – both in Philadelphia. But that gets us into the start of Week 4, and in the interest of not making my blog as long as books, I’ll post this before I leave.

So Week 3 is now over. And even though the fireworks never showered down around me, my book was in a magazine with a shirtless Rob Lowe, at a bookstore with my friends Pam and Laura, and on the most important bestseller list in the world. And I got a chance to wear a red feather boa, make my friend Kathy laugh, and retreat into a Wonderland of flowers with Count Goofinoff.

I’ll end by paraphrasing something someone very dear to me once said: Could there be a better week than this?

The very next day was our anniversary. Hal took the day off, and, after a few hours of getting everything in order, I did, too. We then went to Longwood Gardens, where we spent several hours – wandering, talking, laughing, marveling, and forgetting everything but the soul-filling pleasure of being happily alone with the person you love.

And suddenly, it was 5:30. Time to race down the hallway of this Washington, DC hotel to take the elevator from the sixteenth to the first floor. Time to snake my way through the throngs of bookstore owners and publishers’ sales reps and fifty-five authors coming out with books this spring. Time to enter the gigantic ballroom adorned with delectable hors d’oeuvres I would have no time to eat, make my way to a table piled high with advanced reader’s copies of my soon-to-be-released novel, shake the hand of the internationally famous writer sharing my table, and prepare to sign The Story of Beautiful Girl for hundreds of booksellers.

Time for the big time.

But first, one quick check in my hotel mirror.

One year ago, I never could have imagined I would find myself at this moment in my life. I had just spent three years writing The Story of Beautiful Girl, almost all of it without showing the book to others or even disclosing to those closest to me that I was writing it. I felt I owed it to the characters in the book – who’d come to feel fully alive and emotionally connected to me – to give them the privacy to reach their fullest potential first. After all, the two main characters are people with disabilities caught up in dire situations. In some ways their story mirrors the stories of many people with disabilities I’ve met, read about, cared about, and loved. The book also tells a powerful and important history that has been hidden from or overlooked by America for so long, it might as well be a secret. So for three years, I filled my characters’ spirits with my knowledge, hopes, and heart, feeling compelled to give them all I had before introducing them to others.

As a result, when my agent submitted The Story of Beautiful Girl to publishers last January, it had probably been seen by fewer than ten people. To my delight and amazement, Grand Central Publishing made an offer within six days of receiving the book. The editor was over the moon about the book, and Grand Central is an imprint at Hachette Book Group, one of the largest and most successful publishers in the business, so I knew my book had found a good home.

But what a great home it turned out to be.

Last June, soon after the edits were completed and a publication date was set for May 4, 2011, my editor called. “A lot of people here are reading your book,” she said almost breathlessly, “and they really love it.” It was nice to hear this, but I didn’t understand what that might really mean.

I started to get a hint of it at the end of the summer, when she called back. “They like your book so much, they want to meet you.” In my entire writing career – five previous books, published between 1990 and 2010 – it had always been me who wanted to meet people in the publishing house, not them who wanted to meet me.

I went to New York in September for what turned out to be a big meeting full of major executives. I wrote about this meeting in an earlier blog post, but the very abbreviated version is that the individuals in that room – publicists, editors, sales and marketing people, etc. – were profoundly affected by my book. They made it clear they wanted it to be a big success.

Again, I thanked people. Again, I didn’t really understand what was happening.

Then, a few weeks later, I heard from the publicist who was handling my book. “We’re going to send you on a pre-sale tour,” he said. “Are you free the last two weeks in January and the first in February?” I had never even heard the term “pre-sale tour”, but I said yes, sure, I’d be free. And then the wheels were in motion.

I soon learned that a pre-sale tour is a rare and special thing, done selectively at the request of the Sales department and/or booksellers. It consists of the publisher sending the author around the country months before a book comes out. In each city, the publisher sets up meetings with booksellers, which, in my case, would be at a series of private dinners in upscale restaurants, attended by people from the publishing house and up to fourteen or so booksellers. During the dinner, I would be expected to talk about my book in an informal way. The goal would be to help build interest and excitement for my book, and to build buzz. I would go to eight cities, for eight dinners, in twelve days – after a big kick-off event at a huge booksellers’ conference in Washington, DC.

That was the conference I was about to attend now.

I didn’t like what I saw in the mirror. I’d had such a busy day, I’d checked into the Marriott Crystal City at the last possible minute, three scarves around my neck to shield me from the chill of the January dusk, stomach mewing for its usual five p.m. snack, hair askew from a wildly busy day and a hurried walk here from the Metro. I’d run to my sixteenth floor room, hastily tossed my coat and two scarves, and chucked a few pumpkin seeds in my mouth. But oh, my hair. My usually lively, bouncy, curly hair had lost its verve. It slouched and sulked. It wanted a nap.

No nap allowed! Especially because it was my own fault that my hair was looking so lackluster. I could have just decided, when the publisher set up the pre-sale tour, that I’d do what I needed to do and nothing more. But no. I felt so committed to my characters, and to the secret history told by their lives, that I decided I had to make the most of my time in each city. So for the last few weeks, I’d been setting up meetings with people in the disability community in every city I’d be visiting, and today – the first city, the first day – had been packed.

I’d begun it by taking the Amtrak to Washington, then meeting a prominent person from Easter Seals Project Action. Brought together over lunch in La Taberna Del Alabardero Restaurant near the White House, introduced by a friend in the public transit world, we talked about Easter Seals, my book, and our mutual commitment to social justice for people with disabilities. Then I’d had tea with Joseph Shapiro, author of one of the most important books in the disability community, No Pity (see photo). Only after I’d hopped onto the Metro, gotten lost in an underground maze of shops, and made my way to the Marriott Crystal City, had I arrived at my real destination, the American Booksellers Association’s conference, called the Winter Institute. No wonder my hair was rebelling.

I did the quick-fix trick known to all of us with curly hair: I wet a comb, pulled it furiously through my hair, and plumped up the dripping locks with my fingers. Curls reformed. Revival arrived. I snapped a photo of myself, ran out the door – and then, I was on the tour.

The ballroom was large and crowded. Booksellers from all over the country milled about, sipping wine, nibbling finger food, perusing the list of authors taking their seats at the book signing tables. A lovely person from Grand Central found me and led me through the throngs to my own table. As I looked around, I remembered reading the previous day’s Publisher’s Lunch, an online daily that everyone in the industry reads:

“With each passing year the annual ABA Winter Institute has become a showcase for emerging writers and a place to pre-launch what publishers hope will be summer hits – especially in fiction. Some of the 40-odd authors who appeared at Wi5 last year included Adam Ross (MR. PEANUT), Danielle Trussoni (ANGELOLOGY) Justin Cronin (as part of the massive pre-pub blitz for THE PASSAGE), Brady Udall (THE LONELY POLYGAMIST) and Karl Marlantes (MATTERHORN). For Wi6, which starts today in Washington, DC, the number of attending authors is up to 56 and chatter on Facebook and Twitter indicates it’s going to be an even bigger deal. To that end, I’ve scoured the list of attending authors and highlighted titles, and picked out a number that you have either heard about already or can expect to hear more about soon.”

The writer then mentioned The Story of Beautiful Girl – a highlighted book! My heart leapt. Another prominent book was Guilt By Association, a thriller coming out in April by the famous person who’d be sharing my table. The famous person I was walking up to now. A smiling, attractive woman with a face known to billions. Marcia Clark, the prosecutor for the O.J. Simpson trial.

“So great to meet you,” we both said, shaking hands, and, despite all her fame, Marcia (yes, we were suddenly on a first-name basis) immediately came off as cheerful, friendly, and spirited. She was also very attractive, and clearly as happy as I about being featured at this conference – and being with our publisher. I wanted to ask her so many things, though none of them about the trial, which I hadn’t watched. I wondered how she’d felt going from the public world of the courtroom to the private world of the writer. I wondered if she’d liked writing fiction even more than she’d expected. I wondered if the earlier part of her day had been just as uplifting as mine.

But the lines were already forming, so even though we were right beside each other, we barely got to speak except to share pens or catch our breath together during the rare quiet moment. We had to focus on the booksellers.

And what fun that was. I actually stood beside my books rather than sit, a habit I’ve had since my book Riding The Bus With My Sister came out and I realized that some people in my book signing lines were so moved by the book – or so eager to share their own emotional story – that they would be crying. Being only five feet tall, I already felt far away from anyone standing on the other side of a table, so I just decided to do all my signings standing up, making it easier to look someone in the eye, and, when they wanted, to give them a hug.

So I stood, and rather than risk getting into long discussions with each bookseller and holding up the line, I drew half a dozen into a semi-circle at a time. That way I could tell them about the book – but, just as importantly, I could tell them that I’d once been a bookseller too, and could make suggestions for ways they could hand-sell this book to their customers. It was thrilling to be able to share all I’d learned this last year about why The Story of Beautiful Girl is striking such a chord in early readers. It was even more thrilling when some of the booksellers looked at me with huge smiles or tearful eyes and said, “I’ve already read it – and I love it!” And then we hugged.

I signed advanced reader’s copies of the book for two and a half hours before I even looked up. My mewing stomach was now wailing, but I didn’t care. My hair was doing whatever it wanted to do, and I didn’t care. I just cared that my characters had moved into some readers’ lives already, and touched them so deeply.

After the signing wound down, twenty-two booksellers, three sales people from my publisher’s, Marcia, and I walked three brisk blocks to McCormick and Schmick’s, another nice restaurant. We paraded into a private room in the back, where we sat at a table so long, it had to be positioned on a diagonal, with Marcia on one end, me on the other.

And then we ate a delicious dinner, trading seats halfway through the meal so we could talk to every bookseller there. A number of them had already read my book and were brimming with affection. One said to me, “I loved your book so much, I couldn’t breathe until I got to the last line.” Another said, “The only thing I’m concerned about with your book is that it will sell so fast I won’t have enough copies.” Others, who hadn’t yet read the book, said, “I’ll be seeing you on your tour” – in San Francisco, Seattle, Denver – “and I’ll read it by then!” And with all of them, their bonds with the sales force were clear. These weren’t just business people. They were friends who were devoted to books, and reading, and the life of the mind. They were happy to be with me, and happy to be together. They were the circle of support that all people – with or without disabilities, with or without books – deserve to have. And we were clinking glasses together.

It was heady, to be sure. But finally I broke away, went to the ladies room, and looked at myself once again in the mirror.

Could this really be happening? Yes.

Might the story I wrote – a story that I think could make a real difference – find its audience? Well, maybe yes.

Could I keep going for two more weeks of this, when I’ve already eaten more calories in one day than I usually eat in a week? When I’m setting up so many extra meetings with people for lunch and tea that my curls will need a whole lot more than a wet comb? And when, no matter what anyone might think about my book, I’m still the person who sat alone in a room for three years with no one but Beautiful Girl, the love of her life, Homan, her baby Julia, her devoted staff person Kate, and the stranger she trusts, Martha – caring only that I would do well by them?

Yes I can. Yes, I must.

I tell myself I will share the experience through this blog, from my next stop – Portland, OR, to which I fly on Mon, Jan. 24 – to my last, Denver, which I leave on Sat., Feb. 5.

I tell myself that I will have at least as much fun as I had on this glorious night – and maybe even more.

And I tell myself that isn’t, I now know, the big time.

There is no big time.

There is only one hand-shake and conversation and hug after another, in rooms large and small, over meals grand and simple, with people who have, if this first night has been any indication, truly and wonderfully big hearts.

To learn more about The Story of Beautiful Girl, read an excerpt, see a video, and pre-order a copy, please check out my newly updated website, www.rachelsimon.com.

Ecard created with Smilebox

What do you do when you love someone deeply but have fallen totally out of sync with her – maybe to the point where this person, who you once got along with every day in every way, suddenly starts speaking coldly and harshly to you, rolling her eyes at so many activities you once enjoyed together, or even says those most painful words: “I hate you”?

And what do you do when this person is your own flesh and blood? Maybe even your teenage daughter?

As someone who does not have children of her own, I have been spared this all-too-familiar experience and all the associated pain. But as readers of my books and this blog know, my sister Beth, who has an intellectual disability, has the unusual lifestyle of riding city buses all day, every day, and in the interest of growing close to her after years of emotional distance, I rode the buses with her. I learned many lessons while sitting beside her on the bus, but one of the most important was this: If you want to recapture a closeness you once felt with a loved one, it’s extremely helpful to stop standing outside her world, casting judgment and grieving. Set aside all the criticism you have of her life and the hurt feelings you carry around. And, if she’ll give you permission, just enter her world.

This is the same conclusion that my friend, the writer Lauren Kessler, came to when her delightfully compatible and mutually respectful relationship with her twelve-year-old daughter Lizzie molted into constant conflict. The result is her latest book – which I recently read and got a great deal out of, My Teenage Werewolf: A Mother, A Daughter, A Journey Through The Thicket of Adolescence.

Lizzie had been an easygoing child who loved riding bikes, going bowling, drinking hot chocolate, and doing art projects with Lauren. Then adolescence hit. Not only did Lizzie lose most of her interest in these activities, she began reacting to Lauren with loud sighs, testiness, accusatory glares, and dramatically rejecting gestures.

Lauren was stunned and confused. Then she became frightened, since her relationship with her own mother had deteriorated when Lauren was a teenager and never recovered.

But Lauren isn’t just a loving mother. She’s also an insightful and fearless nonfiction writer. In fact, I first met her through the pages of one of her books, Dancing With Rose (retitled Finding Life In The Land of Alzheimer’s for the paperback). Lauren’s mother had recently passed away from Alzheimer’s, and in the interest of coming to terms with that never-healed relationship, Lauren took a job at an assisted living facility. In the course of learning about the last world her mother knew, Lauren also grew close to several of the residents. That book is as informative about the daily life in such a facility (and I say this as someone who’s regularly in one as part of my hospice work) as it is moving about Lauren’s personal journey.

Having learned from that book what I learned from my memoir about my sister Beth, Lauren decided that the way to gain some understanding of Lizzie was to enter her world. But this time she wouldn’t get a job. She’d just ask Lizzie if she could shadow her life. It is a credit to Lizzie’s bighearted personality, and to the endurance of their love for each other, that Lizzie said yes. And it is a sign of Lauren’s courage, and faith in her ability to see truths that might trouble her, that Lauren then accompanied Lizzie everywhere.

The mother joined the daughter in the social minefield that is junior high. She observed teen dynamics, adolescent friendships, and her daughter, as they went from class to class, walked down the hallways, attended lunch and band. As time went on, Lauren went to sleepaway camp, volunteer activities, job internships, athletic events, and even a sex ed session at school. Along the way, she acknowledged her own emotions, which sometimes veered into dismay or annoyance, other times rose to pleasant surprise and even admiration. Sometimes Lauren managed to keep her thoughts to herself, and other times, to her chagrin, she didn’t. She also re-examined why her own relationship with her mother froze in time – and re-committed herself to not repeating that unfortunate history.

Lauren chronicles this mix of anthropology, journalism, relationship deconstruction, and introspection in her book – and she does so in a way that is honest, informative, humorous, and moving. It’s also a good story, which starts with Lauren and Lizzie being totally at odds with each other, and it ends with them coming back together, now in a stronger relationship.

I was drawn to My Teenage Werewolf because of my affection for Lauren’s last book, but I’m writing about this well-written book here for two reasons. One is because I enjoyed how much I learned – on so many levels.

The other reason is that we live in a world where, when relationships grow difficult or even break apart, so few of us know what to do. We might ask friends, but they’re so often groping for an answer themselves, struggling as they are with their own questions about how to deal with their parent, sibling, child, or friend. We might turn to therapists, too, and sometimes they do offer insights, or provide the gentle guidance, to help us take some kind of step toward healing – though not necessarily toward understanding, accepting, and actively, while keeping the person in our life, repairing. And of course we live in a time of high drama, where adversarial relationships are all too often viewed as acceptable.

So I think it’s important that, whenever we encounter something that has facilitated our sense of compassion and understanding, we let others know – and perhaps all the more so when that compassion and understanding is directed toward our own flesh and blood.

So I’m sharing this book with you because it seems possible that you too might be in a struggle like this with someone you love, and need just the inspiration that this book offers. It will remind you, as it reminded me, not to fight back or reject or run away.

Run toward.

This is a story about how everyone deserves love.

First, please meet my mother. For the past two decades, she’s lived in Florida with her husband, and both are retired. Every spring for the last few years, they’ve driven the thousand miles north to Pennsylvania, where he grew up and they met long ago. They travel in a mobile home, which they then park in a campground for the entire summer. The campground is a few hours from where I live.

This is my mother’s husband. He does all the driving because a few years ago, my mother became too forgetful to cook a meal, much less drive a car, and was eventually diagnosed with senile dementia. She still lives at home, and he’s her caregiver.

They love each other very much and are each other’s constant companion and best friend. They’ve been married for almost thirty years.

I see them as much as I can when they’ stay up north. My mother still knows who everyone is and can carry on a conversation for short periods, but she has large and ever-growing gaps in her memories. It’s hard knowing that any visit I have with her might be the last time she remembers who I am.

Until a year and a half ago, my mother and her husband doted on their pet cockatiels, Lemon and Pumpkin, who were also each other’s constant companion and romantic partner. Their feathered bond lasted for a gloriously happy twenty years, all of which they spent with my mother and her husband. Then, suddenly, Lem passed away. Pumpkin pined away for months, and then he died, too.

My mother and her husband were bereft. They loved these birds so much, they’d long ago stopped using airplanes when they traveled, as they disliked having the birds out of their sight. That’s why they got the motor home, which gave them the ability to drive across the country as a foursome, the birds happily entertaining the humans from their cage, the humans adoringly catering to the birds’ every need. They’d even hired an artist to paint a picture of Lem and Pumpkin on the side of the motor home. At some point, my mother’s husband bought a special box for a double coffin, saving it until the time came so they could be laid to rest in style – and together.

The silence was overwhelming after their beloved birds were gone. There was no one to sing along with the radio, or to dance in the cage, or to display his or her feathers. No one whistled back when my mother said, “Good morning.”

I am a hospice volunteer and spend a lot of time in an assisted living facility, where many of the residents have Alzheimer’s. I see that while some people have regular visitors, others have none, and although I can’t detect a difference in the progression of their condition, I’ve come to suspect that loneliness encourages insecurity, neediness, fear, even desperation. Everyone, regardless of the state of their cognitive abilities, needs to know they’re loved – and needs to have the opportunity to love another back. Whether or not it makes us live longer, I cannot say; but it deepens and enriches every moment that we’re here.

This summer, my mother and her husband came up north in July, planning their return drive to Florida for mid-September. I visited several times, and told them I’d come back one final time a few days before they were scheduled to leave.

But an interesting thing happened a week before that last visit. I went to get my hair cut.

This is Michele. She lives twenty minutes from me and has a sunny room in the back of her house where she cuts hair. She has a warm and caring personality, and always does a great job with my curly mop.

It’s very peaceful in Michele’s haircutting room. She’s the sole employee, and at most I encounter only one other customer, though often it’s just Michele and me. The atmosphere is easy and informal, and, because her family sometimes stops in to say hello, I’ve gotten to know her daughters, husband, and pets. Right now she has two dogs but for a while she had a bird, too. The bird passed away, but she retained a fondness for feathered creatures.

In early September, when I went to Michele’s for my haircut, I opened her back door and, to my surprise, saw a new bird. It was a cockatiel, no less, who was instantly eager to say hello.

“Who’s this?” I asked, walking up to the cage.

“That’s Rudy,” Michele said.

Rudy, who’d already been bouncing around the cage trying to get closer to me, grew even more alert at the sound of his name. Full of energy and blessed with an insistent friendliness, he was instantly likable.

“Where did Rudy come from?” I asked, not taking my eyes off him.

“One of my other customers. He’s only three years old, and her family has grown so much that they recently realized they have too many children to pay enough attention to Rudy. She mentioned that she was thinking of putting him on Craig’s List, and I said, ‘Well, I’ll take him.’ I hated the thought of him being on Craig’s List.’”

I did, too. Rudy was clearly smart and engaged, and his personality instantly struck me as larger than life. It was terrible to think of him ending up with someone who paid the highest bid, and who might not love him as much as, well, as much as he deserves. And everyone deserves to be loved.

I said, “You know, my mother and her husband had two wonderful birds who passed away. I think they’d love Rudy.”

Michele said, “He’s a very nice bird.”

I said, “I feel strange asking this, but…I’m going to be seeing them in a few days. Can I tell them about him?”

“Sure.”

Michele then cut my hair. And right after I left to go home, her daughter, who’d been listening to us from the living room, said to Michele, “I think Rachel really wants that bird for her mother.”

A few days later, I drove to see my mother and her husband, as planned.

And after we’d gotten caught up, I told them about Rudy. “He looks just like Pumpkin,” I said. “He’s bursting with affection. If Michele was willing to part with him, would you want to take him in?”

My mother immediately teared up. “Yes,” she said.

Her husband said, “Oh, three years is a really good age. And it would be so great to have another bird. And we still have all the food and toys and everything we need. But would she really let Rudy go?”

“Rudy sounds wonderful,” my mother said, gushing.

I said, “How about if I call Michele and get her thoughts?”

Right then and there, I dialed Michele. She laughed because she’d been thinking I’d get in touch. Then she checked with her family, and moments later, she called back. “Yes, your mother and her husband can have Rudy,” she said. “We like him, but we haven’t bonded yet. And we know that we’ll treat him like a prince – but they’ll treat him like a king.”

So a few days later, I went to see my mother and her husband one more time, and led them in my car to Michele’s house.

My husband Hal, who also wanted to meet Rudy, was waiting for us. Michele greeted us all warmly. Then we went into her haircutting room, where Rudy awaited.

Hal was immediately taken by Rudy.

Michele brought him out of his cage.

And my mother gave him a kiss.

We carried Rudy outside, set him in the car for the ride back to the campground, and hugged each other goodbye.

Moments later, they drove off with their beautiful new companion. As always, I felt sad, not knowing what state my mother might be in when I see her again. Yet I also felt I’d done a good thing.

A few days later, when they were halfway to Florida, my mother’s husband called. “This is a magnificent bird!” he said. “He’s so friendly. He gets on our shoulders and nuzzles our faces. Your mother sings to him and he sings back. They’re already getting totally attached. We totally love him.”

I could imagine my mother in the background, Rudy on her shoulder as she cooed to him. I don’t know how much longer my mother will remember who I am. But because of one family’s need for help, one hair dresser’s generous spirit, one customer’s luck in scheduling a haircut just when she did, and one bird bursting with affection, I do know that every minute that my mother – and her husband and Rudy – have left on this earth, they will know that they’re loved, and that they will have someone else to love back.

I worry that I’ll get lost, but she is at my side, guiding me, saying, “Around this corner, down this hall.” I put my trust in her, and we walk forward.

I am a hospice volunteer. Usually that means I visit terminally ill patients in their homes, which might be actual houses, though they might be Alzheimer’s facilities. When I see my patients, I ask what they would like me to do. Sometimes I sit quietly across the room while they sleep. Sometimes I engage them in conversation. Maybe we sit on their patio, window-shopping past their memories.

My role is to serve them. My goal is to love.

People ask why I do it. When they too volunteer in some capacity, I can skip the part of the answer that involves words like “giving”, “setting myself aside”, and “doing unto others”, and move directly to the chain of losses that nudged me toward this specific form of giving. But when the idea of volunteering is foreign to them, either because they have too many other commitments or find the very notion baffling (as one person said to me, “Why would I do anything for a stranger—for free?”), I get stuck in what is only a prefix to the real answer.

I suppose if I had to boil it down, I’d answer this: “Because everyone deserves to die with a caring person beside them.”

“Now,” my own guide says, pausing at the elevator, “up to the sixth floor.”

The hospice movement began in the 1960s, when a British medical social worker, Dame Cicely Saunders, started giving lectures about how she was inspired by a dying patient to think about options besides medical settings where patients could go to die. Then Dr. Elisabeth Kubler-Ross published her famous “On Death And Dying,” which brought the process of dying out of the shadows. Soon a philosophy formed that said dying patients have the right to palliative, emotional, and spiritual care, and to focus on quality of life over cure.

Most people think of hospice as being in its own building, and in some cases that’s still true, though a substantial portion of patients are served in their homes. The agency for whom I volunteer, Compassionate Care Hospice, in northern Delaware, didn’t even have a separate building for many years. But recently, St. Francis, a local hospital here in Wilmington, DE, found itself with an unoccupied floor, and an arrangement was made. And so today, led by Anne, the staff person who trained me in giving, I am visiting this in-patient unit for the first time.

The elevator doors open.

To my surprise, Anne and I step out into a space with carpets and plants, upholstered furniture and sunlight. The effect is more homey hotel than austere hospital, a place not of cure but of kindness. My confusion about our way here begins to recede, a process hastened by my meeting the receptionist, with her gentle smile.

The nurses, too, sense my disorientation. They say hello, and their looks are rich with acceptance. I can be lost, I think, as I shake their hands and learn their names, but they’ll be here with me, letting me feel whatever might feel, being understanding if I should need a helping hand.

Anne takes me through my tour.

The facility has fourteen beds, each in its own room, each decorated with patchwork quilts, living room-style chairs that open into beds for family sleepovers, old-fashioned blinds, earth tones. There is a family room where relatives can watch television, sit quietly, or talk to each other, while their parent, spouse, sibling, or child sleeps. One side of the family room has been specially set up for children, with a small table, chairs, and coloring books.

The families also have access to a full kitchen – complete with cookies and other treats brought in by the staff.

There is even what Anne calls a quiet room, which looks like a nondenominational chapel (hospice is for people of any faith, including no faith at all). “Families can come in here,” she says, “when they need to be alone, or to pray, or to cry.”

But I do not see tears today.

There is only one patient in the unit, and I see him only fleetingly, when his door happens to be open and we walk by. A gray-haired woman is with him—his wife, maybe—and she smiles at us, and waves.

And as we continue on, and I walk past the empty rooms which, someday soon, will be occupied by the kind of people who led me, as Anne is leading me now, to hospice, I remember so much more than tears.

There, flashing quickly before me in an empty room, is Angelo, the father of my best friend from fifth grade. A bank teller, jazz drummer, and man of wit and folk wisdom, he had opinions on just about everything—and an open mind if challenged. I think of him before the cancer, at his kitchen table, he in his late sixties, I in my thirties. He is holding up a carton of milk, pontificating about the appalling way most people open the spouts by pushing their fingers inside the folds of the lid. Then I remember his daughter, still my good friend, on the day of the funeral. She is saying to me, “Those people in hospice were amazing.” That is the first time I hear about hospice, and immediately I want to know more.

There, in the next room, I see my best memory of Kenny. A friend who was the bookkeeper at my food cooperative, he told me, soon after we first met, that he could eat whatever he wanted, because he was HIV-positive, and someday he’d be getting too thin. I was in my mid-twenties, he in his mid-thirties, and the closer I got to him, the more I worried. When I learned, a few years later, that he’d come down with pneumonia, I worried harder. When I learned, a few months later, that he’d caught it again, I knew. He left the food cooperative and settled into bed at home. I said, “I’ll come to see you every week,” and for the better part of the next two years, as his partner John tended to him, I did. I hadn’t yet heard about hospice, but, as I later learned, I was practicing it. When I came, John was able to take a break, and Kenny was able to have company. I sat on his bed, listening to his stories about his life, his sadness over the life he wouldn’t have, his happiness about all the love he’d come to know. We never cried. We laughed, especially when he sang along to his favorite Bette Midler video. He had a big booming laugh, and that is what I envision now: his head back, his mouth open, our hearts open wide to the world.

I see others in my memory as we proceed down the halls. The ones killed by accidents, brain hemorrhages, undiagnosed heart conditions, who went too fast to know they were going. What their families would have given for the pause before it was over, for the opportunity to hug, or listen, or assure them someone was there. For what each of their losses taught me was the luxury of hospice.

And then I imagine the patient I have been visiting for the last several months. We also do not cry. With her Alzheimer’s, I’m not even sure she knows she’s going. Sometimes she’s distressed because she’s convinced her mother—dead for decades—is expecting her, but she can’t find the door out. Sometimes she thinks the floor is a cliff and she’s going to fall off. I touch her hands and speak to her. I ask her to tell me about her mother. I suggest we look up from the floor to watch a video of Lawrence Welk. And on warm days, I offer to wheel her outside. She loves the sun, and we sit on the patio, getting warm. I ask her if she wants to sing, and she always does. That is what I see now: us sitting on the patio, singing “America The Beautiful” or “When You Wish Upon A Star.” Singing is good for the memory, I’m told. But as I know from Kenny, it’s just as good for the soul.

“Why do you do it?” people ask.

I think about this question again, as Anne and I say goodbye to the nurses.

She leads me back down the labyrinth of hospital corridors, away from this place of loss and love, where I will spend so much time in the months to come, and where many lives will change, including, in ways I cannot predict but know I will cherish, my own. And as we reach the ground floor, and step out into the light of everyday life, I realize I have a better answer than any of the ones I’ve been giving.

I do it because everyone deserves to be heard.

I do it because everyone deserves to pontificate about milk, or sing along to Bette, or sit in the sun on the patio.

And I do it because everyone deserves to reach out for another hand. Even though nobody knows exactly what lies ahead, with hands intertwined we will walk there together, side by side, for as long and as far as we can.

For two separate but intertwined reasons, this is a momentous week.

First, my husband Hal and I celebrate our ninth anniversary. But the number nine is deceiving. Even if we were traditionalists, which we’re not, we’d feel obliged to skip the pottery and willow gifts nine-year spouses showered upon each other in earlier eras and instead bestow the silver wreaths that commemorated twenty-five years, or the pearls of thirty. That’s because our marriage came about only after one of the most ridiculous courtships in history—thirteen years of living together, followed by a heartrending break-up, proceeding into six years in the emotional desert, tiptoeing into several months of reconnection, friendship, and a new romance, and culminating in a walk in our wedding finery to stand before the justice of the peace.

So our anniversaries are as much triumphs over our past as toasts to our future. And when you have to add nineteen years of past to the official number that marks your present, traditional gifts come to seem absurd.

“Then what are you giving each other?” people ask.

Every year so far in our marriage, I’ve downplayed the answer. We’ll just be going for a nice walk somewhere, I’ll say, or out to dinner. While this response is true, it’s far from complete. I rarely feel comfortable offering the complete answer, especially when this half-answer is met with disappointed looks. It seems that, for many people, even those who are also disinclined to be traditionalists, they expect significant expenditures of money: a vacation to the Bahamas, a trip to a Broadway show, an attractive bauble I could wear on my wrist. Grand, costly gestures to prove—what? That we’ve survived a trek through the terrain of nine calendars? That we’ve kept the flag of commitment we planted nine years ago from shredding? That, despite the tornadoes out in the distance, we’re still partners on this wagon, and we’re continuing forward together?

I hope the pottery, jewelry, and willow industries will forgive me for saying this, but I don’t think couples need expensive gifts to prove these things. Particularly not if, on the journey to and through matrimony, they were lucky enough to discover an even more valuable gift. A gift that comes from error and misjudgment, reflection and reappraisal, effort and resolve. A gift that doesn’t fit into a Tiffany box or require a Caribbean beach, and was harder to earn than money. The gift of really trying to understand not what love is supposed to be, but what it really is.

This gift is the more complete answer to “What are you giving each other?” Yet to talk about it would take a deeply honest conversation that might stretch for a few hours. Such candid disclosures rarely have a place in casual exchanges about anniversaries, or marriages, or any kind of relationship, romantic or otherwise. So for the most part, we keep those answers to ourselves.

Unless, if you’re like me, you like to write—and you especially like to write books.

This brings me to the second reason that this is a momentous week.

A few years ago, I found myself writing about my lengthy, hilly, potholed road to marrying Hal. I hadn’t planned to do so; not only had I already published one memoir, about my relationship with my sister Beth, but Hal and I were embarking on a major renovation of our hundred-year-old row house. And even though he’s an architect and was going to oversee the project, I knew we were in for far too much turmoil to accommodate the writing of a book. Yet when I sat down to write some short stories, my pen appeared to have other ideas in mind: a chronicle of the renovation that was also about what I’d thought love was supposed to be, and how I shifted into learning what love really is. As we progressed from the decision to renovate to Hal’s plans to the demolition and wiring and wallboard and paint, the entire project revealed itself to be a grand analogy for the repairs we made in our relationship—and that I’d made, over the years, with others. These repairs included familiar concepts that are far more formidable to employ, and sustain, than I’d imagined, such as forgiveness for misjudgment, compassion for histories, and respect for differences. They also included an awe about all there is to learn, and see, and live, and an appreciation for the single moment, with one individual, when you realize you’ve met a kindred spirit.

And that book, The House On Teacher’s Lane: A Memoir of Home, Healing, and Love’s Hardest Questions, is coming out this week.

I should clarify something. The House On Teacher’s Lane is not the first time this book has appeared in the world. Like my relationship with Hal, it had a first incarnation, when it was released in hardback a year ago. Also like that relationship, where we were known as boyfriend and girlfriend rather than life partners, this book was originally known by another name, Building A Home With My Husband. But now, with the book being released in paperback, its new name is more in keeping with the truths it shares, which are less about the material world of hammers and wiring, and more about the inner world of emotions and realizations.

These are the complete truths I haven’t told people when they’ve asked what I’m giving Hal for our anniversary. But by happy coincidence, this year, for our ninth anniversary, I can answer. What I try to give him on that day is what I wrote in that book. And actually, it’s what I try to give him every day—and all the other people I love, too.

Because I am not sitting with you right now, talking for hours over cups of tea, but because I would like to share some of the truths I wrote about in The House On Teacher’s Lane, I’m ending this entry with an except from the book. Occurring early on in the story, after I’ve reluctantly agreed to renovate the house, and Hal has begun drawing the plans, it’s when I first begin to confront the question of just what love really is.

You can also learn more about The House On Teacher’s Lane, or order a copy, by clicking here.

*******************************************************************************************

How hard I used to focus on the ways Hal and I differed. He spoke slowly. My words came out like a ticker-tape machine. He had a handful of friends, I, a cast of thousands. He did yoga, I power-walked. He stayed up late, I fell asleep early.

None of these differences truly irked me, but that could not be said of the effort he put into composing music. This would seem to be less a difference than similarity, since I devoted so much energy to writing. But Hal’s compositions were influenced by such non-mainstream performers as Captain Beefheart, Henry Cow, Ornette Coleman, and Gong, and my listening preferences were the Beatles and silence. Also, he rarely finished his pieces. I’d sit at my desk, losing my concentration as his snippets drifted into my study—and I’d steam. Why create atonal music when he was equally fond of melody? How could this man live with himself if he didn’t finish things? And: if we have such fundamental disparities, how could this be true love?

True love—that was the crux of the matter. The couples at college who were so in sync, they’d dance at parties with their eyes closed. John and Yoko, who shared dreams of peace and iconoclasm. Hepburn and Tracy, Bogart and Bacall. As for my true love? I knew just who he was. An unwritten but very exacting list.

It was a list of my own tastes and traits (well, the good ones), as well as specific physical attributes, and early in my love life, one boyfriend had satisfied most of it, assuming I overlooked his determination to never love me. Yet I believed a perfect fit merely awaited discovery. So even though Hal’s looks were strikingly aligned with my fantasy, even though all my friends thought him a man of fine character, even though he made me feel cherished, a few checks were missing on my list. Therefore, how could he possibly be The One?

Only during the six years of our breakup did I start wondering if my idea of love was just a teensy bit askew. Actually, I came to feel horrified with myself. The couples I’d known in college, I remembered, had all gone down in flames. Yoko threw John out of the house. Movie couples often resulted from matches made in adultery.

I hadn’t wanted a man. I’d wanted a mirage.

Ashamed at having duped myself for my entire life, terrified that I was thirty-six, I decided that I had to approach love as an apprentice. Only this time, I’d look at couples I knew firsthand.

Initially, I looked to my parents, who’d created rewarding marriages with other partners. But how? My mother lived in Florida with her third husband, and I was feeling too foolish to ask them about love over the phone. My father and his second wife lived a few hours from me, but I felt just as awkward querying them.

The big breakthrough happened on a simple phone call. I was speaking with a friend, Harriet, who was still devoted to her husband Vic of forty years, as was he to her. In the background I heard piano music. I knew Vic owned many recordings of jazz greats, so I asked Harriet, “Who’s Vic playing?” She said, “That is Vic. He’s taken piano lessons for years.” I’d never known this, and I asked, “Do you like what he plays?” She laughed. “I like jazz okay, but he’s terrible.” I gasped. Then I asked, “Doesn’t that bother you?” “Why should it?” she said. “It makes him happy. That’s what matters to me.”

Of course. My mother didn’t garden all day like her husband, nor did he read mysteries like her. My father spent his days reading The New York Times, his wife sewing. But both couples encouraged their partner’s differences.

So when Hal reached for my hand on the third floor of his house and I embraced the second incarnation of our relationship, I decided to adopt Harriet’s perspective. The effect was instant. No longer did I judge Hal’s enthusiasms by whether I shared them or had them on my list, but by whether, in his opinion, they made his life more worth living. How quickly my life doubled then. How easily we got along.

Now, feeling able to give and receive the love I’d craved all those years before, I understand why Hal’s architectural plans are unleashing ideas inside me. Architecture is a blend—of form and function, solids and voids, scale and proportion, weight and mass—and love is a blend, too. Of two people’s pasts and presents, similarities and differences, flaws and strengths, respect and forgiveness. It too is a design, ever-evolving. Especially if you can admit you could be wrong.

Excerpt from The House On Teacher’s Lane: A Memoir Of Home, Healing, and Love’s Hardest Questions, which is being released by Plume on May 25, 2010. Available in bookstores everywhere, or through these links: Amazon, Barnes & Noble, Borders, and Indiebound.

Last Wednesday, two weeks before my sister Beth’s fiftieth birthday, my phone rang. I saw her name on the caller ID and was baffled. It was only nine thirty in the morning, and she rarely takes her lunch break so early. I snatched up the phone, expecting her usual, sing-songy “Hi, Sis. Thiz Chatty Beth.”

Instead she said, “My side hurts.” Her voice had a gasping, panicky tone, as if she was holding back tears.

I sat up at my desk, on full alert. This is the opening to a call you do not want to get from someone you love, and especially not someone who needs a little more help to get through life. My sister Beth has an intellectual disability, and although she’s confident and self-reliant, has a boyfriend and an apartment of her own, and has carved out a very social life riding buses all day, every day, I know I need to help when she needs me.

I’ve always known that. She’s eleven months younger than I am. On her birthday we’ll be twins for the next month.

I kept my voice calm. “Does it hurt a lot?” I said.
,
“A lot. And I’ve been throwing up all morning.”

“That doesn’t sound good.”

“My aide’s coming to take me to the doctor.” She pushed the words out through what were obviously volleys of pain. “At ten.”

“Do you want me to come to you?” Beth lives a couple of hours away, even if I broke speed limits all the way there.

“You don’t have to. She’s taking me.”

“Maybe you should go to the hospital.”

“I’m going to the doctor!”

“Will you call me as soon as she sees you?”

“Yeah.”

“Do you want to stay on the phone until your aide gets there?”

“She’s gonna call so we can’t.”

“Then tell her to call me, okay?”

“Yeah,” she said, and she hung up.

I sat there, my heart pounding. I have no medical training, but these sounded like serious symptoms. I wanted to do right by her, but she didn’t tell me to come. My friends with kids have told me about calls like these, when their daughter or son phones in the midst of a crisis, not knowing what was happening, wanting to connect but not wanting their parents’ help, and maybe living too far away for help to come galloping immediately there anyway. My friends have told me about the fear, the feelings of powerlessness, the time-stopping descent into hell of not knowing how bad this might be.

Having a sibling with a disability is not like having a child. For one thing, Beth has always been there; unlike parents, I knew no Before.

For another, everywhere you look, a substantial number of the adults you’ll see are parents, so, as singular as your problems with your child might be, you can take comfort in knowing that you’re far from alone. But special siblings, far less common, might know few, if any, others like themselves, so the sense of aloneness, of having to figure it out on your own, of having no one except a handful of other siblings who truly understand, can be profound.

There are many other distinctions between having a child and being a sibling to someone like Beth, but the one I have the opportunity to notice most often is that sometimes Beth wants to me to do the things a parent might do, like pay for her meals when we go out, attend meetings with her aides, answer questions she’s too embarrassed to ask anyone else. But other times she wants me to be only a sofa-sharing companion while watching DVDs, a supermarket chauffeur who lets her buttons get pushed, an engaged listener to endless bus-related gossip, a tireless back scratcher who expects to get teased for eating soy yogurt, agrees to watch Shark’s Tale for the thirtieth time, notices that each toenail is painted a different color, and knows not to step on the purple rug—i.e., she wants me to be a sister.

Being the sibling of a person with special needs means being a shape-shifter. Which is why, when she didn’t ask me to come meet her at the doctor’s, I didn’t just don my parent cape, jump in my car, and fly up to see her. I stayed dressed as an ordinary sister and waited by the phone at home.

Years ago, I struggled with just about every aspect of our relationship. Then I rode the buses with her, and came to terms with many things about her, about myself, about the unique nature of the special sibling relationship. I recounted my experiences in a book, Riding The Bus With My Sister, which became a movie. But my story with Beth has, of course, continued after the last page and the final credits. That’s the real difference between being a sibling of someone like Beth and being a parent. The lifelong worry of After.

When I was a kid, After meant after our parents passed away. I knew, as did my brother and other sister, that we were expected to step in and be there for Beth after they were gone. As a child, I just accepted this as a fact of my life, but by my college years I’d come to dread it. How would I know what to do? What if we weren’t getting along, as was the case then? Why wasn’t I free to live my own life without this responsibility?

Then Beth entered the world of adult services, and we were lucky enough to find an agency that treated her well. They got her an apartment when she didn’t like the group home. They gave her good training in independent life skills. They hired aides who often stayed with Beth for years. With their support, I no longer had the worries I’d had about After. I could choose to be there After, but it wasn’t a requirement.

I chose to be there.

And then I started to realize there was another kind of After.

What happens After one of us begins to lose the vigor and health we’ve both enjoyed through our half century together? I hate to say this, but I’ve always hoped she would lose it first, so I could—if she wanted—accompany her to doctor appointments and keep her company if she grew weak. Yet she’s always seemed so robust, so unstoppable; even with a cold, even in a blizzard, nothing will keep her off the buses. What will it be like to watch the decline of the willful, energetic, Croc-addicted, Winnie-the-Pooh-adoring, always-in-my-life force of nature known as Chatty Beth? (She was Cool Beth for a long time, but switched to Chatty Beth when a new, favorite bus driver was amused by her talkative ways.)

I haven’t wanted to think about it. Not only can’t I imagine her not being there, always eager for a visit, a call, a letter, and money to buy her ice-cream. But I’ve known siblings who’ve lost their Beths, and have told me that the absence and grief is made all the harder by people who just don’t get it. One friend told me that, soon after her sister’s funeral, people said to her, “You must be so relieved.” She wasn’t relieved at all; without her sister, she felt forlorn, and given that kind of reaction, she felt abandoned.

It’s ironic. Being a sibling of a person with a disability means always feeling connected to someone else. Yet because of the way our society thinks of that someone else, it also means feeling far apart from others.

Fortunately, because of my book, there are hundreds of thousands of people who do think about Beth. Many of them are also siblings, or parents, of people with disabilities. Or they have disabilities themselves. And they know her life is worth as much as any other life, and would never dream of saying, “You must be so relieved.”

Yet there I sat, after she’d hung up, feeling all alone. I wasn’t at her side as she hurried to the doctor. I wasn’t speeding down the highway to meet her at the hospital.

Only later did I learn that I wasn’t alone at all. When the day had begun, and she’d insisted on getting on the bus despite the pain in her side, her bus drivers took stock of the situation. When she began to throw up, they urged her to go home, call her aide, see the doctor. When her aide came, they rushed to the doctor. When the doctor saw her, she sent them to the emergency room. When Beth called her boyfriend from the hospital, he rode his bike right there.

I learned most of this a few hours later, when another one of Beth’s aides began calling me with updates. Over and over she called, as every little piece of news developed. That’s when I found out that Beth had many people who’d been ready to help out. That’s when I found out that, after an early suspicion of diverticulitis and the discovery of an excess of white blood cells, and then a CAT scan, an IV, and morphine for her pain, her aide and her boyfriend stayed by her side. She wasn’t alone.

And, because of the kindness of her friends on the buses, and the professionalism of the people who work at her agency, and the devotion of her boyfriend, neither was I. I might have been sitting alone at home, holding my breath. But I was one of many who encircled her, waiting for the answer, hoping for the best.

Finally, at seven o’clock, she called. This time there was excitement in her voice. They were releasing her, she said, and she couldn’t wait to get home. Her aide got on the line and explained that Beth had had a kidney stone, which she’d passed while she was in the hospital. She was also found to have a slight case of pneumonia. Oh no, I thought, imagining her blasting onto the buses the next morning. But then I learned that, when Beth called a bus driver to tell her, she was told she simply had to stay home the next day and fill the prescription the hospital gave her and take it easy and that was that. And so, Beth told me, she would.

I went to see Beth a few days later. She seemed a little lower in energy than she often does, though I’m not sure if that was because of the pneumonia. In fact, one of her drivers said to me, while I was there, that maybe it was a misdiagnosis, because, after her one day off, Beth had gotten back on the buses and ridden with her usual gusto. The downshift I saw in her energy was probably more related to her having fallen over an uneven sidewalk when she went out to get the prescription filled. She’d hit her forehead and gashed her knee, which still hurt. I felt a surge of worry, then learned that she’d applied Neosporin and bandages.

“How did you know to do that?” I asked.

“A driver told me.”

So as of today, it seems we’ve pulled through. There will be other times ahead, I know that. And maybe the next one will hit me instead of her. But right now, when I think about the Afters that will come, I know she won’t be alone—so I won’t be, either. Some people just get it. They might not be siblings, or even parents. But whoever they are, they know what matters. They know not to step on the purple rug. They know not to ignore the many-colored toenails. They know not to toss around words like “relieved.”

I stood on our front porch, waiting for the vet to arrive. It was a chilly Saturday evening in May, though the wind gusted like November, sweeping old leaves up into the air and down the street, twirling them out of my sight.

Inside the house, our cat Peach lay on the kitchen floor, where she had lain for much of the last day. My husband Hal sat beside her, stroking her fur, cooing consoling words. She was fifteen, and her long-haired, calico coat was as beautiful as ever. But her plume of a tail, once a flagpole of merriment as she bustled down the stairs to greet us hello, stretched flat on the floorboards, and her eyes, which had gazed into Hal’s so many times with a look of unconditional adoration, stared out into nowhere, unfocused.

We didn’t want to believe her time had arrived. Yet even as we hoped the vet would say recovery was still within grasp, even though we knew she wanted to hold onto her life, we knew she would not revive.

Her decline had begun a few years ago. That’s when our cheerful chatterbox with the insistent friendliness and fill-up-a-house personality, whose dainty ballerina turnout, combined with a sashaying gait, made us call her Miss Marilyn Meow, added some new and unwelcome behaviors to her repertoire. She howled loudly, peed outside her cat box, drank water constantly, lost lots of weight, and ran about until she collapsed into the deepest of sleeps.

After many visits to Dr. Coogan, the softspoken veterinarian who, it turned out, every pet lover in our neighborhood called their own, we learned she had hyperthyroidism. Increasingly common in cats, with unknown causes, hyperthyroidism will ultimately lead to kidney failure. There is only one medication that might help, and we tried it in pills, pill pockets, liquid, and a gel we applied to her ears. But it made her sleep all the time, or throw up, or have allergic reactions. So about half a year ago, in the fall, we decided to take her off the meds, and let what would hapen happen.

The wind rushed down our street with a force I hadn’t seen since around the time we made that decision. It tipped potted plants onto their sides and spilled out the dirt. It snapped strong young branches off trees.

Hal came up beside me, and put his arm around my shoulder.

He glanced at the trees on our street, their leaves chattering in the gusts. “Such a windy day,” he said. “Somehow it seems appropriate.”

The graph of Peach’s health had been sloping down for months, but it was gradual. The bottom seemed far away.

Only two nights ago had we reached the steep drop down. We didn’t realize it at first, because she and our other cat, Zeebee, had spent the day romping and sleeping in our small backyard, and in the neighbors’ yards across our side alley. When dusk fell, Zeebee came in easily, but for awhile we couldn’t find Peach. Then we located her, perched on the edge of a neighbor’s tiny fish pond. Since her illness, she’d drunk water from this pond. That night, she wasn’t drinking.

A few hours later, at four in the morning, she woke us with a plaintive cry. We found her in the bathroom, a place where she rarely ventured, and after we brought her to bed to comfort her, she climbed out, made her way downstairs, and laid beside her water bowl. I’d heard that’s one of those bad signs, so we tried a trick we knew of giving her ice cubes and encouraging her to lick. She didn’t lick.

At sunrise, Hal called Dr. Coogan. He’s the kind of old-styled vet who’s cut from a cloth rarely made anymore: he has a gentle, caring demeanor, sees patients the day they need help, and understands that animals have the capacity to enter the souls of those who love them. He told Hal to bring Peach in, where we learned she was severely dehydrated. For a few hours he gave her fluids, then released her. But when Hal brought her home and set her carrier case on the floor, she didn’t move. We urged her out, and saw her legs were wobbling. She laid on her side on the floor. Hal sat in a chair and brought her to his lap. “This isn’t looking good,” we said.

That was Friday. Now it was Saturday. The journey through Friday night had been a march into dread. Will things somehow turn around? When should we call the doctor again? How can we go on without our mirth-making, dustball-producing, quilt-kneading Miss Peachie Pie?

We didn’t sleep, thinking instead about how, when Hal was single fifteen years ago, he found a shriveled, lonely, quivering cat in his backyard in another city. She had a collar but no tags, and somehow, for reasons we would never know, had gotten separated from her home, and taken refuge under a concrete bench outside Hal’s back door. He’d recently said goodbye to his first feline soulmate, Woody, who’d also had hyperthyroidism, and died at age twenty-three. So his house was empty and his heart was ready, and when he lured this lost, pathetic looking creature into his warm kitchen, she moved into his life as well.

She found him, and a paradise beyond any she could have ever dreamed of—shelter and food and rugs and beds and warm laundry and nightly brushie and nuzzly-cuddly-giggly-fur-addicted-nickname-minting-cat-dancing companions—became hers.

There were intrusions in her paradise. Moves to a few new residences, with all the accompanying changes in routines. The arrival of a black and white stray, Zeebee, who Hal insisted we take in a few years ago.

But mostly Peach had a gloriously happy existence. And she repaid us by winning over the hearts of everyone—friend, neighbor, even new wife—who encountered her. They called her “Mouthy” for her talkativeness. Everyone marveled at how she’d speak whenever you waved your arms near her, like the electronic instrument of the theramin. Neighbors discovered her boldly exploring their houses when their back doors were open. They saw her appear on their back porches whenever they were barbecuing, snatching up any morsel that fell from a fork, earning her yet another nickname, The Hamburglar.

Her eyes were smart. She knew her name. When we learned that Delaware had declared our state dessert to be the peach pie, we laughed and said, “It’s true.”

Dr. Coogan circled our block twice before he was sure he was at the right address. I wasn’t sure what I was expecting, but it wasn’t an older, white van, the kind families take for long vacations. I wasn’t expecting him to get out in shorts, a t-shirt, and a baseball cap. For a moment I wasn’t even sure it was him, except that when he got out, he held a cardboard cat carrier and a leather medical bag—the kind I’d seen only in old television shows, when small town doctors paid house calls.

Who pays house calls anymore? Certainly not doctors. Probably not vets.

Yet when Hal called during Dr. Coogan’s office hours Saturday morning, saying Peach had shown no improvement, and in fact hadn’t been able to hold the fluids she’d received the day before, Dr. Coogan said we didn’t have to make any decisions just then. Yes, his office closed at noon on Saturday, but here was his home number. We could call whenever we needed him over the weekend. Hal asked if there was a chance Peach could come back. Dr. Coogan said it was remote. But, he added, we could wait and see. And if the time came when we felt decisive—and, he emphasized, emotionally ready—he’d come.

So Saturday we sat vigil, waiting and seeing. We began on the kitchen floor. But the morning was sunny and warm, and, aside from being in Hal’s arms, the thing Peach liked most in the world was being in our backyard.

With great care, we carried her outside and set her on the grass. She laid limp. Hal brought out his guitar and serenaded her. She sat up. We called neighbors who loved her. Susan, who’d named her “Mouthy,” came over and stroked her coat. Jen, whose yard backs onto ours and who often found Peach on her porch, said Peach felt like her cat, too. Kelly and Dave expressed sympathy over our shared fence. Hal’s parents called. My father called.

But there was a moment in the midst of all the goodbyes when hope returned. Peach’s favorite place in our yard was the Japanese maple tree, under which she would sleep for hours. And after several hours outside when the most she could do was raise her head, she somehow roused herself to stagger across the yard, jump up and over the foot-high slate border of our garden, and collapse beneath the branches of her tree. There she slept in her beloved spot, and we thought, How was that possible? Maybe she was coming back!

The winds came up then. The branches started snapping.

She crawled out from the tree but could walk no more. “I think she wants to go in,” Hal said.

We brought her to the sofa. I knew the decision had to be Hal’s—he was her true love, and she his second feline soulmate. I was her breakfast feeder and daytime playmate. But I was not the center of her universe.

Hal said, “Let’s wait until tomorrow morning.”

I waited fifteen minutes, and I said, “Why?”

He leaned over and pressed his face into her fur and mumbled their secret language, the one they’d shared since he rescued her from the concrete bench. He had waited a few hours too long when Woody died, and had watched the poor animal suffer in his last breaths. He didn’t want that to happen again. Yet it was clear Peach still loved life. And he—and I—loved her life, too.

Then he lifted his head. “I’m calling Dr. Coogan.”

Dr. Coogan came into our living room. “We’re still wondering,” I said, since I knew Hal could not. “Let me see her walk,” Dr. Coogan said, and when Hal set Peach on the floor, she just settled right where she was.

He said, “Her breathing is labored. She has no more than twenty-four to forty-eight hours left, and they won’t be easy ones. I think your decision is the right one.”

So we brought her to the coffee table and held on. And he explained everything before he did it, and was kind and gentle. And the life left her quickly and easily, because she was already so close. And he closed her eyes, and we placed her in a box. “Now I’ll leave you to your grieving,” he said, and he left. And we cried.

The next morning was cold and the wind was still autumn-strong. Hal dug the grave in the backyard, in a spot close to Peach’s tree. We cried and cried and set the box within. Then he covered it with dirt.

We’d thought of getting a marker of some kind. But then we realized that, sitting across the yard was a very large rock, left over from several tons of stone we used, not long ago, to build a stone wall in our yard. The rock was calico-colored, we suddenly realized, and so Hal carried it to the covered grave and set it on top. “Should we say anything on it?” I asked. We both knew the answer, and as we held each other, crying, we also laughed. “State dessert,” we said, looking down. “The Peach Pie.”

The house is quiet now, and Zeebee is just beginning to search for her friend. We cannot tell her Peach is gone. But just a few moments ago we saw her sitting on the back steps, staring out to the rock.

We look too. The wind still hadn’t settled down, and we’re waiting for May to warm up again. We know we were lucky. Hal had fifteen years with one of the greatest cats of all time, and I had nine. We were given many months, even years, to adjust to her decline. We had the presence of mind to make a decision before her suffering began. She said goodbye to her friends. She spent a final afternoon under her favorite tree. She had a veterinarian who was exactly what a veterinarian should be.

But as much as we wish it would, luck doesn’t balance out loss.

We miss her so, and we always will.