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Rachel Simon's Blog

Posts Tagged ‘Riding The Bus With My Sister’

Recording The Audio Book of My Memoir, Riding The Bus With My Sister

Tuesday, January 31st, 2012
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Rachel Simon during the recording session for the audio book of Riding The Bus With My Sister

When I found out last fall that my memoir, Riding The Bus With My Sister, was finally going to be recorded for an audio book, I was relieved, grateful – and nervous.

Relieved because that book came out ten, yes, ten years ago, and in all that time, the audio rights had languished, unsold. It didn’t matter that it became a national bestseller, or was adapted for a Hallmark Hall of Fame movie. Nor that a woman with disabilities once angrily admonished me – during the Q&A at one of my talks – for not having the book in all formats, thus making it more accessible. She assumed, as did seemingly everyone, that I’d blithely chosen to withhold the book from being read for audio, rather than that the original publisher (who will go unnamed here) held the rights, and had, for reasons unknown to me, failed to sell them to an audio house.

My gratitude didn’t go to that original, unnamed publisher, but to my current, wonderful, attentive, and smart publisher, Grand Central Publishing. When their parent company, Hachette Books, published the hardback of The Story of Beautiful Girl in 2011, they put it out in every format: book, ebook, large print, and audio book. I was so overjoyed when I first saw the audio book that I sent them a thank you note. Perhaps coincidentally, perhaps not, a few days later my agent called and said, “Hachette wants to buy the audio and large print rights for Riding The Bus With My Sister.”

I almost levitated up to the ceiling. No more embarrassing moments as an audience member yells at me in front of five hundred people. No more awkward attempts to explain why such a popular book hadn’t ever become available on audible.com, or iTunes, or good old CD.

But then my agent said, “And they’d like you to be the reader.”

Were they kidding?

Me, who does public speaking but was never even in a school play?

Me, who can barely read my husband a paragraph of a juicy Gail Collins op-ed without flubbing a word?

Me, who can’t open her mouth in the streets of Seattle or Lansing or Little Rock without getting pegged instantly as a native of the Northeast?

My agent said, “Maybe they’ll do a test of some sort to see how it goes.”

And I said, “Ooookkaayyyy.”

For the next several months I heard nothing more about a test, a recording session, or even how one prepares for such a public display of slip-of-the-tongueness. I did get to listen to the audio book of The Story of Beautiful Girl, where the reader – a serious professional reader, named (was it possible this was her real name?) Kate Reading – did a magnificent job of distinguishing every character, major and minor, through her considerable vocal talents. Martha sounded like an elderly woman, Lynnie like a young woman with her own way of thinking, Homan like an African American southerner. Even the minor characters were distinct.

The cover of the audio book for The Story of Beautiful Girl, read by Kate Reading


I wasn’t the only listener who admired Kate Reading. The audio recording received a starred review from Publishers Weekly. Fans and friends recounted stories of listening to the book while on a bus or in their car – and crying their eyes out. (To listen to an excerpt, and to read the review, see this link.)

I suppose it might have helped that Terry, a bookseller in Arlington, VA who connected with me by Twitter shortly after the publication of The Story of Beautiful Girl, told me that she and Kate Reading met many years earlier at college – and that “Kate Reading” is, in fact, a stage name; the real person is Jennifer Mendenhall, a professional actress.

This insider knowledge served to humanize Kate Reading for me. But only until I looked at Jennifer Mendenhall’s website and saw that she’s a long-time star of the stage who’s appeared at The Kennedy Center and won the Helen Hayes Award.

Would I be expected not just to read, and to read without trippingovermywords, and without tawking like oy’m from New Joisey, but to come up with different voices for me as an adult, me as a child, Beth, Jesse, every bus driver, and all the passengers?

Maybe Hachette would forget.

Then, in December, I heard from Amber, a production coordinator in the audio department at Hachette. She wanted to book five days of recording time in a studio in Philadelphia. Would I be able to get there? Uh, yes, if we started after rush hour passed. Fine, Amber said; we’ll start at 11 a.m., and go until 5:00 p.m. Could I give her dates when I’d be available? Um, sure, January 9 to January 13. But how do I prepare? She said she would send other audio books they’d made that were read by the author.

The audio books came. Some were by authors who were so accustomed to being recorded – Tina Fey; Ellen Degeneres; a reporter for NPR, Eric Weiner – that I couldn’t really put myself in their shoes. I focused on the recordings by non-celebrities, like Kate Braestrup. Yet even she read flawlessly, emotionally, with a humorous or sad tone when it was called for. How would I do that?

I emailed Amber. “We can always take several takes until we get it right.”

Yes, of course we can. But “several” probably means two or three. Not fifty.

She said, “I’m sure that you will do a great job. The most important thing is to know the material (that is a given!) and to be confident. And I’ll be directing so I’ll be there the whole first day.”

“Should I try to do the voices differently?”

“It would be good to do the character voices. Since you are familiar with these characters and they are real I am sure that you will do a good job.”

What if my voice got hoarse from overuse? I mean, reading for hours a day could leave a person sounding like a two-pack-a-day smoker, right?

“Have a good rest, stay hydrated and you’ll be fine!”

Should I bring a copy of the book with me?

“We won’t be able to read from the book. It will create too much noise in the booth. I have a pdf of the large print edition of the book. I’ll send it to you in advance.”

The book cover of Riding The Bus With My Sister, which came out in 2002.

A few days later, a package with a 540-page manuscript arrived, the large print version being almost twice the length of the 296 pages needed for the regular book. I didn’t even want to look at it – and not just because of the formidableness of the task at hand. The truth is that I never reread my books once I’ve finished with the edits. I’ve never seen the point, and frankly, I always have something better to do. So it had been eleven years since I’d read more than an isolated passage in Riding The Bus With My Sister. I wasn’t sure I should reread it in advance of the recording because I couldn’t tell which would be better: refreshing my memory, or losing the freshness of a suddenly remembered story.

So I didn’t reread the book. Aside from looking up the website for Baker Sound Studios, where I’d be doing the recording, and telling everyone I’d be unavailable for a week, and packing up the huge manuscript in my bag, I didn’t prepare at all.

Then came the day we were to begin. I drove into Philadelphia, trying not to think about making a fool of myself. I thought instead of terrific audio books I’d listened to that were read by their authors: Myla Goldberg’s rendition of Bee Season, Melissa Bank’s The Girl’s Guide To Hunting And Fishing, Jon Krakauer’s Into Thin Air. All were utterly mesmerizing. If they could do it–well, I didn’t know if I could do it. But Hachette thought I could do it.

I parked in a lot at 19th and Chestnut. Then I followed the directions to a particularly obscure block of Ranstead Street, one of the tiny, one-lane streets that are easy to miss in Center City Philadelphia. In fact, I’d never even seen this block of Ranstead, probably because it’s a dead end. Baker Studios is in an utterly inconspicuous building, with no obvious signage. But it had a purple door, I knew. I walked up to the purple door and opened it.

The stairs went down. I descended to a level beneath the ground and opened the door to Baker Studio.

Some of the amenities at Baker Sound Studios

There, in this windowless, softly-lit, impeccably silent space, I was greeted by a woman with a gentle smile. She introduced herself as Ellen, the Studio Coordinator: “I’m here to help you with everything other than the recording.” She walked me through a rabbit’s warren of corridors and rooms—all elegantly, yet simply, decorated. There was the restroom. There was the hospitality room, with a refrigerator, microwave, comfy sofas, and counter full of grapes, apples, bottles of water, and a tea machine–all of which I’d use over the next few days—as well as much I have no interest in: chocolate, pastries, wine.

Then she brought me to Studio B.

“Hi, Rachel!” It was Amber, rising from a seat beside a desk, shaking my hand.

“Hello, Rachel.” It was Jeff, the engineer we’d be working with. He turned from his console and shook my hand, too.

Beyond his console was a window looking into a tiny room. In it was one chair, one microphone, one music stand. That, I knew, was where I’d be spending this week.

I said, “Here’s the manuscript,” and I pulled it out of my bag. Then I saw that Amber and Jeff each had one as well.

My director, Amber, and the engineer, Jeff.


I admitted, “I didn’t really prepare.”

“That’s all right,” Amber said.

“What do I do when I get to the bottom of each page? Won’t you hear it rustle?”

“Most people pause when they get to the last period or comma on a page, then move the paper and begin the next page.”

“What happens when I mess up?”

“I’ll be here. I’ll direct you to back up and read it over again.”

“What do I do now?”

I thought she’d say, Let’s do a practice run. Instead she said, “Let’s get started.”

Jeff sat me down in the little room, which had a thick carpet and bright lights, and was exceedingly warm. (This was great news for me, as someone who’s almost always shivering.) I placed the first fifty pages of the manuscript on the music stand and set the headphones onto my head. Jeff walked out, shutting the two doors between them and me.

He looked at me through the window. The glass was dark so I couldn’t see much, though I could see his face, and my reflection. Through the headphones I heard him say, “I need to do a sound check. Just read.”

So I looked at words I’d first written in a whole other life—before I was married, before I was a public speaker, before I’d been on a movie set, before I’d worked things out with my sister. I read them, hearing my voice in my ears, and suddenly I was back there, a single woman living alone, feeling guilty about being a “bad sister,” working in a bookstore while teaching and while freelancing for The Philadelphia Inquirer, getting on a bus with Beth for the first time.

Amber and Jeff on their side of the recording booth.


“It sounds good,” Amber said from the other side of the two doors. I heard her as I heard Jeff: through the headphones. I saw her as I saw him: through the window.

Jeff fiddled with his engineering board in whatever way engineers do. Then he said, “Okay, ready.”

I took a sip of water and went back to the top of the page. This time it was for real.

And then, carried along by words someone I knew once wrote, reading in a voice that sounded an awful lot like mine, I traveled to another time. I was thirty-nine, Beth thirty-eight, and I was back in that first freezing morning, racing out from her apartment into the pre-dawn moonlight, hurrying down an empty, snow-filled street, into a MacDonald’s. I could smell the coffee she bought. I could see the other customers, huddled over their playing cards and want ads. We bolted out to a bus shelter—

“Bus shelter,” Amber said in my headphones.

Ah, yes. I’d said, “Busshelter” or maybe “Buh shelter.”

Pulled out of the memory, flung back into the present, I backed up to the previous comma, grateful for those natural pauses, which that other Rachel had put in just the places where this Rachel might need to breathe, and I read again. And I returned to the past again.

So it continued. For the first several hours, Amber, and sometimes Jeff, gently jumped in at least a few times a page. “Can you back up a sentence? You’ve picked up the pace.” “Go back to the last comma; we could hear the very end of the page turn.” “It’s ‘a’ bus, not ‘the’ bus.” And for those first several hours, I kept flitting in and out of the memories.

The large-print manuscript (aka the script) was on a music stand. The bright light ensured that it was easy to read, assuming I really looked at every word.

But sometime near the end of the first day, I began to see where my weaknesses lay: a word ending in an “s” sound followed by another that began with an “s” sound, leading me to speed up or mispronounce the first word. Letting my mind drift—usually because I was so immersed in the scene I was reliving it, or I was transported to other memories with that same person, so I missed words. Falling into my New Jersey way of pronouncing certain key words—“theater” being the primary one—and needing to hear Amber say it over and over until I could get it right.

Nothing could slip. The microphone picked up the tiniest growl of my stomach, the slightest smacking of my lips. The microphone does not forgive those common verbal accidents that friends tacitly agree to ignore, like final letters that are skipped, singulars that are made plural. The microphone reveals every emotion you’re feeling: the quiver of tears held back, the higher tone of anger.

But by the end of the day, for the most part I was able to catch myself. (Well, not with the growling stomach; I kept imagining that no one else heard that, until Amber or Jeff would say, “Let’s redo that line. There was some stomach noise.”) I’d recognize that a listener wouldn’t quite be able to follow what I was saying, or would get distracted, and I’d back up to the previous comma and reread.

Commas were my friends. Periods were my very good friends. Paragraphs were my bosom buddies. New chapters were the loves of my life.

I quickly gave up the idea of distinguishing all the voices. It took a level of skill I just didn’t have. I did decide to use distinct voices for Beth and Jesse, which wasn’t hard, since I hear them speak all the time on the phone and in person. I also decided to use distinct voices for a few of the bus drivers.

Mostly, though, I figured that people interested in audio books read by the author are willing to sacrifice the virtuosity of a real pro for the authenticity of the real author—and especially in a memoir. Indeed, in a memoir, a buoyant tone when the writer is smiling, or a slowing down when a writer feels longing, is appropriate, even expected. The more I let myself be myself, the better the book would be.

Rachel Simon, inside the recording room, reading Riding The Bus With My Sister.


Once I understood that, which happened by the second day, Amber and Jeff stopped needing to jump in as often. And this wasn’t just because I’d gotten the knack of correcting myself. It was because I allowed myself to re-immerse completely in the world I’d written in that book.

I was again the guilt-ridden, giddy, confused, controlling, annoyed, admiring, lonely, and loving adult I’d been when I’d ridden the buses. And when I hit the flashback sections, I was, again, four, and seven, and thirteen, and sixteen, and in college. I was playing with my sister Beth in the fun hideaway under the house, looking up at a spider web, tickling her arm. I was again hugging my father as he stood beside his moving van when my parents separated, then running after him with my sister Laura as he drove away. Once more I was walking down the hallway in junior high, smelling the Clearasil and Herbal Essance, stifling myself as the Special Ed kids, Beth among them, walked by. And once more I was leaving Beth behind on a cold, sleeting February day, packing my belongings into my father’s car, along with my brother, as my mother retreated to her bedroom with the bad man who would become her second husband, and as Beth, with our dog Ringo in her arms, waved goodbye to us from the front door.

These were moments I’d never forgotten. But to my surprise, there were many memories I hadn’t thought of in years. It was as if, having written them in the memoir, I’d turned and walked away from them. As soon as each new scene began I would think, Yes, right. I would even remember writing each, and sometimes recall discussions (and occasionally arguments) with my editor. Yet those additional memories did not interfere. They were off to the side, like a conversation a few seats away on a bus.

All along, Amber and Jeff listened as professionals, which meant they followed every word. At the same time, they listened as regular people. Both of them, it turned out, had a personal connection to the material, one through kinship, one through friendship. They told me they were thinking about their own past experiences as I read, wondering if, and how, they might do something different in the future. When I finished each chapter, they sighed and murmured wordlessly, leaving me to imagine just how my own struggles were affecting them. When I emerged from the room during breaks, I could see my feelings mirrored in their eyes.

It was the most private of public remembering. Alone in a room, where I could hear no one but myself and my audience of two, I felt myself in the most intimate of situations, and could let myself be fully vulnerable. I could go for a page, a few pages, sometimes several pages in a trance. Then I’d catch myself making a glitch, or, less often, they’d bring it to my attention. And I’d remember that inside those headphones sat not just Amber and Jeff, but thousands, maybe millions, of others. They were not here yet, but I could feel their presence, as I felt the presence of those in the past. I was with all those who had been while at the same time all those who have yet to be. But then I’d look back at the page, return to my time travel, and let everyone stay on the far side of the dark window. I could barely see through it anyway.

Jeff told me that the typical three-hundred-page book takes twenty-four hours to record, which usually means three eight-hour days. It turned out that my reading went more quickly; I actually finished in three six-hour days. (He also told me that Baker Sound Studios, which has three recording studios and a long, storied history, now gets used more often for audio books and other spoken word recordings than music. Among the authors who’ve read their own books in Baker Studios is local mystery sensation Lisa Scottoline. That said, I did see some musicians while I was there.)

The work isn’t finished, though. Now the editor needs to listen to everything, including all the corrected glitches. Then we’ll meet again to rerecord anything that needs yet another round. We’ll also add a few bonus tracks, including an essay I’ve just written about what’s happened in the ten years since the book came out. After that, Hachette sends the completed recording to an outside consultant, who listens with new ears. The audio book will be released sometime in the spring.

By then my memories will have begun to recede.

One More Page Books in Arlington, VA, where I'll be doing an event with Kate Reading, the narrator of audio book for The Story of Beautiful Girl, on Sat., March 3, 2 PM.

By then I’ll also have met Kate Reading. As luck would have it, Terry, the bookseller who I met on Twitter, got in touch with Grand Central Publishing and asked if her bookstore, One More Page Books, could host a double bill with Kate Reading—that is, Jennifer Mendenhall—and me. The focus would be on The Story of Beautiful Girl, since that’s the book she read.

The timing was just right, because, as regular readers of this blog know, Grand Central is sending me on a book tour in February, right after the release of the paperback. Originally, the tour was to take me to ten cities. But because I’ll be doing an event in my home town of Wilmington, DE a few days after I return, and because I’ll then be going to One More Page Books for the double-bill with Kate/Jennifer, it’s become a twelve-city tour.

So on Sat., March 3, 2012, at 2:00 p.m., this author will meet the actress at One More Page Books, 2200 N. Westmoreland St., Suite 101, in Arlington, VA. I’ll talk about writing The Story of Beautiful Girl, and she’ll read from the book. Then the audience will be invited to ask about the making of audio books. As someone with a lengthy list of audio credits to her name, she’ll answer most of the questions. But now I’ll be able to chime in, too.

“What’s it like to record a book?” friends keep asking me. And then they ask, as I asked myself in the months leading up to my time in Baker Sound Studio, “How do readers sound so flawless? If you make a mistake, do you have to read it over and over again?”

Rachel Simon, nearing the end of recording the audio book of Riding The Bus With My Sister

“Yes,” I can say now.

But I can also say that reading words a second time is, in fact, a very minor part of the experience. Far more important is that you read your life a second time. You live your life a second time. You become who you were, and you remind yourself who you are, and you take that long, potholed journey again, from there and then to here and now. And as you do, alone in a room with an audience of ghosts you cannot see, you can say to yourself, Hey, you did some dumb things, but in the end you made some good choices. You learned where your weaknesses lay. You got the knack for correcting yourself. You might have always known where you needed the commas, but now you also know how to breathe.

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Tags: audio books, book tour, books, developmental disablities, publishing, recording audio books, Riding The Bus With My Sister, writing life
Posted in Riding The Bus With My Sister, Writing and publishing | 7 Comments »

Picking Up Speed: The 2nd Week After Beautiful Girl’s Launch

Wednesday, May 18th, 2011
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My sister Beth and her boyfriend Jesse help me celebrate

The second week in the life of The Story of Beautiful Girl has been demanding, stimulating, exhausting, full of happy developments with the book, full of friends old and new, full of events public and private, and overflowing with unbelievable excitement.

First, the BIG, BIG, BIG news: This evening, exactly two weeks after publication, I learned that The Story of Beautiful Girl hit the New York Times Bestseller List!!! It comes in at #30, and will first appear on the 5/29 list for fiction in hardback. The full list will be available only online, since the print edition covers only the first 15 (of 35) titles.

The following blog is about the many wonderful things that have happened over the last week. I just told you the most exciting news of all, but I hope you’ll read on. The first part of the blog is devoted to headlines, and the remaining five parts to photo-stories of the public and private events I did during the week just before The Story of Beautiful Girl became a New York Times Bestseller.

If you attended any of the events I write about below and would like to provide details that go beyond my brief introductions for each, I hope you’ll post comments at the end of this blog. I’m sure people would love to know about these experiences through your eyes as well as mine.

Here are the big pieces of news over the last week:

The June issue of Oprah Magazine listed The Story of Beautiful Girl as one of Ten Titles To Pick Up Now, calling it “heart-tugging.”

The Christian Science Monitor named it their #1 novel for May 2011, calling it “improbably beautiful.”

The Omaha World-Herald called The Story of Beautiful Girl, “The most compelling, resonating novel I’ve read in years….A breathtakingly beautiful, yet heart-wrenchingly aching story that, despite its cruelty and humanity, uplifts the reader….This is a story of people choosing to do the right thing, even though it might not be correct or popular. Readers will rail at the injustice of humanity, smile at the wonderments and cry at the ending.”

The Philadelphia Inquirer called my writing, “smart and laced with sweetness, presenting an optimistic view even when her subject matter is bleak. She brings an anthropologist’s eye to her stories, describing characters, action, and emotion as if she were new to the weary world. By seeing anew what comes naturally to most of us – cognition, memory, hearing, speech – Simon illuminates her characters’ interior lives and finds new and forgotten meaning.”

Display at the Salt Lake City Airport

Friends sent word about the book getting high-profile display at bookstores everywhere – including the one in this photo, at the Salt Lake City Airport.

Late last week, the book sold out at Amazon.com and they had to reorder.

Over the weekend, it sold out at several brick and mortar stores and they had to reorder.

On Tuesday, it went into a second printing.

On Wednesday morning, two weeks after publication, it reached #15 on the bestseller list for independent bookstores, also known as the Indiebound bestseller list.

And on Wednesday night, it hit #30 on the New York Times Bestseller List!

But ordinary life goes on. Here in reality, both our dishwasher and dryer broke. Yes, two major appliances went kaput within the same afternoon! How implausible is that?

Never let it be said that success means you won’t have to sit around waiting for the repairman.

But mostly, I haven’t been sitting around at all. I’ve been running around, doing the first of many events and gatherings I’ve been planning over the last few months. I’ll share photos from five of them here.

Event Number One: Patricia’s Reception

My first event, exactly one week after the book’s release, was a private reception. It was hosted by a dear friend from college, Patricia Hamill, who’s a lawyer, and who wanted to hold a customer appreciation event for her clients. She and her assistant, Lydia Santiago, worked hard figuring out the right venue, sending out invitations, and attending to the smallest and largest of details. The result was a lovely gathering of almost 60 people in the elegant Pyramid Club, which is fifty-two stories above the city of Philadelphia. I was able to invite a few friends as well.

The evening began with mingling. Then I did a reading and Q&A. A book signing – where Patricia gave everyone books she’d already purchased from Joseph Fox Bookstore – brought the night to a close.

The view from the Pyramid Club.


Mingling with Patricia Hamill and guests.


The crowd gathered.


Then everyone got seated.


Patricia introduced me.


I read from the opening of the book.


People lined up for the book signing.


It was great to see old friends like Marshall.


And it was great to meet new ones, too.


I signed until long after sunset.

Event Number 2: JEVS’ Talk and Book Signing

Main Line Arts Center


The following night I did my first public event. It was hosted by JEVS Human Services, who also hosted my debut public event for Riding The Bus With My Sister many years ago. I returned to them a few months ago, asked if they’d like to host the debut public event for The Story of Beautiful Girl, and was thrilled when they said yes. (So now it’s a tradition!) I worked closely for the last few months with Kristen Rantanen and her colleagues at JEVS, who were just as attentive to detail as Patricia and Lydia had been the night before.

In addition, I worked hard creating a Powerpoint with artwork and photos to illustrate the talk I would be doing. You’ll be able to meet some of the people who helped me when you see the photos for Event Number 4, Sherri’s Garden Party.

JEVS wisely selected the Main Line Arts Center for our venue, which meant that I gave my talk, and did the book signing, in art galleries. This was a perfect choice for a book where one of the main characters communicates through art. The books were also from Joseph Fox Bookstore. The 75-80 attendees included people who work for JEVS, individuals who are supported by JEVS, and friends, private students, and former students who live in the area.

A few hours before the event began, I went to the bookshop at Bryn Mawr College, my alma mater, where I also taught creative writing until 2007. My 30th reunion is in a few weeks, so the bookshop kindly ordered copies of The Story of Beautiful Girl and asked me to come in to sign them in advance. Since Bryn Mawr is only down the road from the Main Line Arts Center, I took the opportunity to go to campus, where I then signed all 48 copies. Just as I set down the pen and was about to run off, a former colleague came up to me, expressing great interest in the book. She was not someone I’d known well while I was teaching there, so I was surprised. And then, when she asked me to sign a copy for her daughter, I was thrilled.

Astute observers of the photos below will notice that I’m wearing the same outfit I wore the evening before, at Patricia’s reception. Yes, you’re right. In fact, it’s also the same outfit I wore to walk the red carpet at the movie screening for Riding The Bus With My Sister. (You can see a photo of that moment by clicking here.) It happens to be a marvelously comfortable outfit that requires no ironing, which got pretty important with so much happening this week (and was why I didn’t wear my new red dress from Nordstrom’s). It’s also an indication of how rarely I go shopping – and how difficult it is for me to find comfortable clothes for my small frame. But I figure that no one expects writers to wear new clothes for every occasion. The way I see it, wearing the same clothes for event after event, year after year, is one of the perks of the profession.

The gallery where I would be speaking.

Kristen and me


The crowd mingled in the art galleries.


I signed books & saw friends.


Then the crowd got seated.


Tracy introduced me


JEVS CEO Jay Spector sat right in front.


All too soon, it was time to sign more books.


I saw many old friends.


And old students.

And new friends.


I wished the evening hadn't had to end.


Thank you, JEVS!

Event Number Three: Nancy’s Lunch Celebration

Nancy Weiss helps me celebrate.

This one was very easy and quiet.

The morning after my JEVS talk, when I was exhausted to the point of being woozy, I downed multiple cups of green tea to wake up, then drove to Newark, Delaware. There, I met with my friend Nancy Weiss for a celebratory lunch.

Nancy, Director of the National Leadership Consortium at the University, read The Story of Beautiful Girl last summer, and has been so overjoyed about its reception by both the disability community and the world at large that she asked to take me to lunch. I don’t have very expensive tastes, so we met at Panera, she brought plastic champagne glasses, and we toasted the moment over sparkling water.

Event Number Four: Sherri’s Garden Party

Flowers at the Garden Party


This is the first time I’ve published a book without doing any events in bookstores. As many of you know, I used to run events for Barnes & Noble, and I absolutely loved hosting authors. I also loved doing readings myself in bookstores. But when my last book came out two years ago, and I set up readings in several local bookstores, I discovered that turnouts had diminished severely. Indeed, it seemed as if the era of bookstore events had drawn to a close. I hope I’m mistaken about this, but to spare myself the frustration and heartache of setting up bookstore readings for The Story of Beautiful Girl only to find them terribly under-attended, I decided to focus my efforts on special events hosted by people like JEVS or my friend Patricia.

However, this created some disappointment among friends who lived too far from the events I set up. Thus I came up with the idea of doing house parties if people wanted to host them. The first person I discussed this with, Sherri, who lives in central Pennsylvania and who asked me to speak at her book club a few years ago, said she’d love to host a party. She called it a Garden Party, and we set the date for the second weekend after the book was released. I invited many friends in that area – as well as my sister Beth and her boyfriend Jesse. Among the twenty-five or so people who came were the artist John Dusko, who painted the images that opened my talk at JEVS, and the board of the Pennhurst Memorial and Preservation Alliance, who provided me with information and archival photographs.

Sherri was as careful a planner as JEVS and Patricia had been. How could I be so lucky? And to make matters even luckier, the weather report called for thunderstorms – but what we actually got was a warm and sunny afternoon. I also got a gift that only I saw, right at the end of the day.

Sherri, party hostess extraordinaire


Sherri's huge, lovely garden


Sherri's attention to detail shows in her garden.


...and her enticing display of the food.


I brought my sister Beth...


...and her boyfriend Jesse.


Hal brought John, a great artist, who doesn't drive.


John (facing camera) did the paintings that open my new presentation.


The Pennhurst Memorial & Preservation Alliance.


Other guests were nursing educator and friend Deborah


...and Special Education teacher Pat.


My friend Janet brought cupcakes adorned with red feathers.


Beth brought the copy of my book signed by her bus drivers.


I made many new friends, like Debbie and Marissa.


And I introduced friends to each other.


Beth was a social butterfly.


Everyone got to take home a small plant.


And everyone left with a book.


I went home with a full, happy heart...


And a glimpse of a rainbow in the sky.

Event Number 5: A Conversation At Woodlawn Library

Last fall, Kim Tull, a librarian at Woodlawn, my favorite local library, recognized who I was when I was browsing the stacks in my usual incognito way. She struck up a conversation with me, and as we talked about books and authors and events, I happened to mention that I was putting out a novel in the spring. For the next few months, we chatted whenever I saw her in the library, and then a month or so ago, Kim asked if I’d consider doing an event for The Story of Beautiful Girl. Of course, I wanted to do something in Delaware for my new book (and, having received a 2011 fellowship from the Delaware Division on the Arts, I was also required to). The Woodlawn Library, a small, new, green-oriented library that serves a diverse array of patrons, and that has the friendliest staff I’ve ever seen at any library, seemed like the ideal location. I said yes.

But I didn’t want to do a reading and wasn’t sure the venue would lend itself well to a presentation. “Why not have someone interview you?” Kim asked. “Who?” I asked. We both thought for about two seconds, and then said, “Rita Landgraf.” For those outside Delaware, Rita Landgraf is the Secretary of Health and Social Services. I’d met her a few times before and been as impressed by her warmth as I was by her knowledge. Kim got in touch with Secretrary Landgraf’s assistant, and immediately we were told, “She’d love to do this.”

Again, the preparations for the event went smoothly, thanks to the efforts of Kim Tull, the staff at the Woodlawn Library, the Friends of the Woodlawn Library (who got books from the Ninth Street Bookshop), and Secretary Landgraf and her staff. Eighty-five people attended, and Secretary Landgraf guided our conversation perfectly. It was a joy to work with everyone, and I just loved the entire evening.

The entire event was photographed and videotaped by Mobius New Media, the folks who handle my website. I hope to post their video soon.

But first – I must get the dryer and dishwasher repaired! And get some rest. Now that I’ve hit the Times list, I’m in completely uncharted territory. So I need to shore myself up for whatever Week #3 brings.

And I so hope you’ll go there with me.

The room before the crowd.


Bill clipped a mike on me for the video.


Diana Brown introduced us.


We took our seats.


And Rita Landgraf began our conversation.


At one point I asked Hal to help me answer a question.


I enjoyed the interview format.


And from what I could tell...


...the crowd did, too.


Again, the book signing was a time of old friends.


And a time of new friends.


A time to say hi to a wonderful writer and blogger.


A time to renew a bond with a wonderful mother.


Thank you, Woodlawn Library!

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Tags: book tour, books, events, Riding The Bus With My Sister, The Story of Beautiful Girl, writing life
Posted in The Story of Beautiful Girl, Writing and publishing | 9 Comments »

My First Interview on Internet TV

Tuesday, March 1st, 2011
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Family Network TV is a new internet TV channel founded by Susan Stephens, an energetic and visionary grandmother of a boy with cerebral palsy. The shows on Family Network TV focus on families who are living with disabilities, with the goal being to unite the special needs community worldwide. Susan Stephens, Vice President Tara Ecklund, and a team of fifty parent and sibling volunteers have poured their time and love into making this dream into a reality. Family Network TV made its internet debut at the end of February, 2011.

The Family Network TV show “What’s Happening” is hosted by fellow sibling and writer Mary McHugh. Mary recently interviewed me about the genesis of my upcoming novel, The Story of Beautiful Girl, which will hit the stores on May 4, 2011, and asked me to give some behind-the-scenes insights into the writing process. Mary’s interview with me was conducted on Oovoo, an online video chat service, and posted soon after Family Network TV launched, on February 28, 2011.

To watch the fourteen-minute interview, click on the first video below.

And if you like this video and this format, I hope you’ll check out Family Network TV and see the many other programs they offer.

Here’s to a bright future, Susan, Tara, Mary, and all the people who make up Family Network TV! You have my gratitude and best wishes.

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Tags: books, developmental disablities, disability, Family, friendship, hope, Riding The Bus With My Sister, The Story of Beautiful Girl
Posted in People in the disability community, Writing and publishing | 2 Comments »

Home But Hardly Slacking: The Ascent To Publication Continues

Thursday, February 24th, 2011
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The pile of mail that awaited me upon my return home two weeks ago has been opened. Mostly.

The phone messages that were left while I was all over the country have been answered. Pretty much.

The Himalayan mountain range of electronic communication that grew steeper and higher and farther until it touched the deepest blue of the sky and extended well beyond the known world has been assessed. Hiking expeditions have even gone up the first few summits. Though there are many to go, and already, more mountains are forming.

All of this is happening while my sweet, quiet routine, with husband Hal and kitty Zeebee and long work-outs and mugs of tea and a hardback novel in my rocking chair and a spiral notebook in the library – all of which rose tantalizingly in my mind while I was flying from city to city – still await my return.

This is not what people expect to hear. They expect that, having dispatched with my on-the-road commitment to my publisher, I’ve flung off the adrenalin, sense of purpose, extroversion, and list of commitments I needed on the road and simply pulled my regular life back on, as if I were changing from a tailored suit and too-tight pumps to comfy khakis and a much-worn sweater.

But The Story of Beautiful Girl is my sixth book, and, having held other writers’ hands for the twenty-three years I’ve been in the business, I know that the whole year leading up to a book’s release is critical. The writing and editing might be done, and the publisher – in the best of worlds – might be sending out advanced reading copies to reviewers and interviewers, figuring out a marketing strategy, and encouraging bookstores to place their orders. So to the uninformed it would seem that the writer’s work is behind her. However, the publisher – in the best of worlds – can accomplish its goals all the more readily if the writer is a full member of the team, since, among other things, the writer might have contacts in niche markets, or creative ideas for how to reach readers.

In the case of The Story of Beautiful Girl, and as those of you who’ve been following this blog know, my passionate efforts during this pre-publication phase of my novel aren’t simply because I’m the author of this book. They’re also because this is a novel that takes readers deeply into the hearts and minds of two adults with disabilities, like my sister Beth and her boyfriend Jesse, or like the thousands of individuals I’ve met through my talks for my memoir, Riding The Bus With My Sister. It’s also a novel about the moral conflict and selfless devotion of a direct support professional who provides support for the character of Beautiful Girl, like staff people who’ve worked with my sister and others I know. And it’s about a childless, elderly widow whose life suddenly changes when a newborn baby is left in her care. (She is not like anyone I know, though I’ve had some early readers say, “I wish that would happen in my life.”) So despite being fiction, this book is intertwined with many people who mean a lot to me. And I feel I owe it to them to do all I can to generate an audience for this book.

So in the interest of assisting my publisher further – while not spending my usual five hours writing a long, detailed, here’s-everything-that’s going-on blog, thereby freeing me up to keep scaling those endless, snow-capped electronic summits, not to mention doing my hospice volunteering, seeing my sister, and visiting friends in need, such as a wheelchair using writer who just had a terrible accident and is now recovering in a rehab hospital – I’m devoting this post to a few book updates, and one very personal thrill.

BJs, the wholesale club, has a book club, and they just announced that The Story of Beautiful Girl will be their May selection.


Publisher’s Weekly, the influential trade journal, has given the book a glowing review. Please note that this review comes with a Spoiler Alert, so read at your own peril by clicking here.

ANCOR is a trade association advocating on behalf of 800 private providers of services for 500,000 Americans with disabilities that employ over 400,000 direct support staff in almost every state in the country. To help me spread the word about The Story of Beautiful Girl, they’ve posted an informative page on their website devoted to my book. If you’d like to support ANCOR, please order your book through their site.

I have had many discussions with organizations that will be hosting me at upcoming talks, and then I’ve updated the Appearance page on my website accordingly. The current page reflects only what’s been finalized as of today. I expect to add many more events as the time of publication nears.

My publisher has been busy too. Mostly this is with things I don’t know or feel the need to ask about. But one thing I do know about, and adore, are four terrific animated ads they’ve created.

One of these ads, the one with the white background, hints at the plot; the others include endorsements from some of the booksellers I met and dined with during the pre-sale tour, as well as the wonderful writer John Grogan, author of Marley and Me and The Longest Trip Home. These ads, which have been posted in in several places online, have continued the publisher’s mission of building pre-publication excitement about the book.

To view these ads in their animated form, just click on one and wait a moment for the animation to begin. You can also add them to your own website by right-clicking on an animated ad to download the file to your computer, then opening it using Quick Time, and following the same procedure you would when adding a regular image.

But my life hasn’t been just about The Story of Beautiful Girl and seeing friends and others in need.

Despite my not being able to return to a contemplative routine, I have celebrated a momentous occasion with my husband Hal: the debut musical performance of the trio he plays in, Puddles In A Gondola. On February 13th, Hal and his two fine musician friends, bass player Matt Stein and violinist June Bender, played two improvisational pieces at the Highwire Gallery, an art gallery in the Philadelphia neighborhood known as Fishtown.

I know what you’re wondering right now. What type of music did they perform? Those of you who don’t already know about Hal’s unusual, undefinable music from my last book, The House On Teacher’s Lane, might want to prod me with such helpful but ill-suited suggestions as, “Rock ‘n roll?” “Blues?” “Jazz?”

The best response I can give is that, although Hal, Matt, and June all have training in classical music and although their tastes run from jazz standards to English folk, the music they played that night was a blend of many elements that add up to something avant-garde. As you can see in the photos below, in addition to Hal’s guitar, he played an electronic bassoon. He also used electronic looping throughout the performance. Matt and June each stayed acoustic, but added toy instruments (yes, like Fisher-Price), selecting such things as plastic saxophones and flutes at random.

The audience was small but spirits were high. And everyone – especially the guitarist’s wife, who was tired from climbing but invigorated by loving – had a fabulous time.



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Tags: disability, publishing, Riding The Bus With My Sister, The Story of Beautiful Girl, writing life
Posted in Rachel's Family, Uncategorized, Writing and publishing | 6 Comments »

My Pre-Sale Book Tour Begins – Thurs., Jan. 20, 2011

Saturday, January 22nd, 2011
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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.

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Tags: books, booksellers, developmental disablities, friendship, love, people with disabilities, readers, Riding The Bus With My Sister, The Story of Beautiful Girl
Posted in Rachel's adventures on the road, Uncategorized | 24 Comments »

My Trip To Alaska: Jack London I Am Not

Monday, December 13th, 2010
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Me and a stuffed grizzly in the Museum of the North

Philadelphia was bathing in thirty-four degree sunshine when my husband Hal dropped me at airport. I lugged my bags into the terminal, noting that they felt heavier than they usually do when I travel to give talks around the country. I could have chalked the weight up to faulty memory, as I hadn’t done a presentation since the season of short sleeves. My energy level was also a notch below robust, as I’d just fought off a minor case of the sniffles.

But memory and muscles were fine. My suitcases were stuffed like overburdened sleds because I was on my way to Fairbanks, Alaska. There, over the next five days, I would be doing three presentations related to my book Riding the Bus with My Sister. And a trip to Fairbanks in the wool-fleece-and-thermals month of December simply necessitates bulk.

I’d almost squealed with delight when the Fairbanks Resource Agency contacted me in the spring and asked me to speak at their annual gala in December. Although I’d spoken for many service providers that support adults with disabilities and had even done such talks in Anchorage six years ago, I’d never been as far north as Fairbanks. And I’d been to Anchorage in April, right after “breakup,” when the winter snow suddenly melts, and when sunrise is at six in the morning, sunset near ten at night. I was now heading into a land of subzero temperatures, where daylight would commence after ten in the morning and depart by two thirty in the afternoon.

I made my way to the gate for the first of my flights, remembering Hal’s reaction when I got the invitation.

“Are you kidding?” he’d said.

“It’ll be an adventure!”

One of my beloved Jack London books

“Fairbanks in December?”

“If Jack London could do it, so can I.”

He’d made a scrunched-up face that he hadn’t unscrunched in the months since.

To be fair, Hal’s reticence about this trip was not simply the result of him envisioning himself slogging through a wind-swept, snow-drifted, dark-as-sleep nowhere. It was more a result of him knowing me.

I am not just someone who gets cold. I am someone who often wears a jacket in the summer, and in the winter I wear coats even inside the house. I get a chill deep inside my chest, and once it starts, there seems little I can do to stop it. This isn’t just imagination: touch my hands during these episodes, as people inevitably do when I meet them at talks, and you’ll be grabbing onto an ice glove.

How, Hal and other caring friends wondered as the day for my trip neared, would I possibly endure the extremes of a place like Fairbanks? Which, we found out the night before he took me to the airport, can get as cold as seventy below? And where sunshine itself is powerless to induce warmth? “You’ll spend the rest of your life thawing after this,” he said.

But how could I say no? I would be seeing a faraway land close to the tip of the globe, where all that is familiar to me about light and dark, winter and summer, ordinary and extraordinary would become but a memory, and new rules of day, night, cold, time, and even the colors of the sky would take its place. How could I not take the opportunity to shake up all I know about my relationship to things so fundamental, I can barely imagine my consciousness without them?

Sculpture of Native Alaskans, from the Museum of the North

Besides, I kept wondering: what kind of people actually live there?

I got my first answer to this question soon after I arrived at the gate. My flight, which was supposed to depart at 1:00 PM, was delayed until at least 3:00 PM. This one change would prevent me from making my second connection, and so I spent the start of my trip rescheduling all my subsequent flights. My original plan was for three flights that would last fourteen hours. Now I would be taking four flights lasting twenty-two hours. A test of mere stamina became a test of endurance.

This is what Alaskans live with, I understood as I hunkered down for my first, second, and third waits. Not just snow and ice and wind and midnight sun and daytime night – but the need to expect the unexpected. And all the patience and fortitude that might be required.

I can do this, I thought, hauling my carry-ons through the concourses at Chicago O’Hare and Seattle-Tacoma International and Ted Stevens Anchorage Airport. Each time my effort proved harder and more laborious, and soon I was cursing myself for not having crammed even more into my checked bag. But then I’d think about the thousands of intrepid individuals who made this journey before the age of flight. My pitiful twenty-two hours would bear little resemblance to the months, or years, of hardship they endured on rail, stagecoaches, horseback, and ships. I told myself to enjoy the luxury of dozing on a seat in an airport, with music and televisions blaring, and babies crying, and, in Seattle, a water fountain that blasted loud glug-glug sounds whenever it was used. Stop kvetching, I told myself. Be tough.

Fortunately I forgot that sometimes, when people made the trek to the Last Frontier, the duration and the physical demands were so great, they fell ill, or even worse. This could happen to the hardiest of souls. So it was quite possible it could also happen to a twenty-first century city girl from the Northeast.

Who’d just—she thought—gotten over the sniffles.

And whose final, fourth flight—the one she’d had to reschedule herself onto—required her to walk across the tarmac in twenty below, schlepping the unbearably leaden carry-ons, so sleep-deprived and so confused by the darkness and the snow that she almost walked in the wrong direction.

Thermometer when I checked into the hotel: -22 F (The larger numbers are Centigrade)


So by the time I landed in Fairbanks at 7:00 AM (11:00 AM to me), my fate was sealed. I thought I was just exhausted from the four thousand mile ordeal that took me from thirty-nine degrees latitude to sixty-four degrees latitude and from thirty degrees Fahrenheit to twenty-two below. But my exhaustion was actually a portend—and the proof that my curiosity, adventurousness, and Jack London admiration surpassed the current limits of my constitution.

But for the first day I gallivanted about, unaware that my immune system was about to shut down. I was tired but with such a brief period of sunlight, I wanted to see all I could. After all, I immediately realized that Fairbanks was not what Hal and I had envisioned, and I realized I wasn’t just in a land of cold and dark. I was also in a land of surprises.

For starters, this was not a windswept, snow-drifted, dark-as-sleep nowhere.

There was, in fact, no wind—there rarely is in Fairbanks, I learned. Nor were there snow drifts, because Fairbanks tends to be too cold for snow; the more common weather challenge is ice fog, which so impedes visibility that it’s one of the few conditions that might close schools for the day. The terrain was mostly flat, and I didn’t even see mountains in the distance.

This was not a nowhere, either. It was a place with four military bases, a large university, a museum that’s an architectural wonder, multi-lane roads that pass the same stores we have in Delaware, a population of over thirty thousand—and more people who’ve relocated there from all over the country than I can remember seeing anywhere else. In fact, I heard almost every kind of accent a person can hear in America.

And whether they came from New Jersey, Long Island, Minnesota, Phoenix, Colorado, or California, no one I met, and no one I saw, allowed the weather to inhibit them in the slightest. They went to jobs and stores and coffee shops and movies and everything you can think of just as much as anyone in a warmer climate.

Eva Norwood, my guide in Fairbanks

They did it all without the bulky clothes I’d schlepped across the country, preferring layers topped by sweatshirts or jackets when they were outside. And, when they were inside, a significant number of people wore t-shirts and short sleeves, even if the rooms were cool. How was this possible, I found myself asking over and over. To which the answer would inevitably be, “You just get used to it.”

I spent most of my first, still-healthy day with my escort, Eva Norwood, Community Development Director for Fairbanks Resource Agency. She picked me up at the airport, drove me to my hotel and then, over the course of the day, around Fairbanks. We rode in her trusty station wagon, fleece blankets on our laps, a horizontal crack across her windshield. “It’s impossible to avoid the cracks,” she said as we made our way along the snow-slicked roads—her car, with its studded snow tires, never skidding. “They cover the roads with gravel, and the little pebbles are always flying into your windshield. You can spend all winter repairing it, so I figured I’d just wait.”

Gravel-strewn roads and fleece blankets were just two ways people made their peace with driving in Fairbanks. In the interest of keeping their engines warm, they also leave parked cars running while they’re inside, as I discovered when Eva and I went to lunch at a packed Thai restaurant. They might even have upgraded their cars to include remote starters, which they have to reactivate every two hours. Those of more modest means can plug their cars into the engine block heaters that dot many, but not all, of the parking lots I saw.

The Museum of the North, Fairbanks, AK

The highlight of my tourist expeditions came that first afternoon, when Eva brought me to the Museum of the North. Located at the university, the striking building was designed to convey a sense of Alaska, with shapes and spaces evocative of alpine ridges, glaciers, and whales. The collection was equally stunning. One enormous room takes visitors through the five major areas of Alaska, each with its own history, animals, folk arts. Eva had once been a docent here, and by the end of my private tour, I had a vastly enriched appreciation for the state, and the resourcefulness of the people who’d inhabited it for millenia. Other rooms featured artwork by classic and contemporary Alaskan painters and sculptors. (At the end of this blog, I have additional photos I took while I was there.)

And then there was a room unlike anything I’ve experienced anywhere. Called “The Place Where You Go To Listen,” and created by composer John Luther Adams, it is a continuously changing sound and light art installation—with both the visual and the audio experiences derived from, as an article in the New Yorker once put it, “information from seismological, meteorological, and geomagnetic stations in various parts of Alaska…fed into a computer and transformed into an intricate, vibrantly colored field of electronic sound.” The sound on the day I visited hummed and tom-tommed, with harmonizing echoes like a choir in a cathedral; the colors were magenta shading into deep red. It differs at every visit, Eva told me; sometimes you hear the sun create more harmony, the moon make dapples of sound, and the Northern lights ring across the ceiling like bells. The room reminded me of my beloved light tunnel in the Detroit Airport, which I wrote about in The House On Teacher’s Lane. But this was a tiny space, and the sounds and lights weren’t pre-set; they were happening in real time, reflecting the current state of this corner of the planet. I could have stayed in there forever.

A painting in the Museum that shows the pale pink, gold, and blue sky


But the sun was setting, and as we emerged from the galleries in the museum and looked out the windows over Fairbanks, I learned that I needed to correct yet another misunderstanding. I’d thought of this part of Alaska as a place of extremes. Standing beside me at the window, though, Eva pointed out that it’s a place of subtleties.

At this time of year, the sun doesn’t rise, or set, in the way it does back in the Northeast. Instead, it stays low along the horizon. So the sky is a study in golds and pinks and pale blues—which then reflect on the snow. “We don’t have white snow here,” she told me. “You think it’s white until you really look and see it’s not.”

Later, when I went out for dinner with three other people affiliated with Fairbanks Resource Agency, I learned more about subtleties. “We don’t have real darkness here,” there told me. “You think it’s dark but it’s not.” I asked how that could be; when I looked out the window, it sure looked like my idea of night. “Yes,” they said, “but with the snow reflecting the stars and the moon, we don’t really have dark skies.” Not the way the skies can be dark in, say, rural Hawaii or Arizona, they added, where they sometimes spend the winter, and where the nights are so completely dark that they actually feel scared.

Another favorite Jack London book


In Fairbanks, they added, they never feel scared. Rather, they feel at peace with nature—and embraced by everyone around them. “It’s one big family here,” they said. “If you see someone broken down on the road, you stop to help. That’s just the way it is.” They all moved here from the lower 48, and love Fairbanks so much, they never want to live anywhere else.

I went to bed that first night, amazed at how wrong I’d been about this place, and eager to learn so much more.

But by the next morning, my immune system had surrendered. I woke with a ferocious sore throat and thudding headache. I still hoped to get out to see other sites, to stand a chance of catching a glimpse of the aurora borealis, to meet new people and learn more surprises.

I did manage to have a few more conversations. During a marvelous dinner with Emily Ennis, Executive Director of FRA, I learned she entered the field decades ago by without training, family ties, or preconceptions; she just walked into a room of adults with disabilities in Fairbanks who needed to be occupied during the day, and instantly understood that they were full, whole individuals desirous of living meaningful lives. I also connected with a waitress in my hotel restaurant who was the sister of a woman with a disability, and who spoke tearfully about her sister’s transition from living in the state institution to a community setting. Politics also crept into some discussions. Yet even though folks in the lower 48 seem to think immediately about Sarah Palin when they hear the word “Alaska,” the people I met were less inclined to talk about her than about the recent, contentious Senate race, which Lisa Murkowski won over Joe Miller by a write-in vote.

Me with FRA board members Maria Messina and Jeri Wigdahl, just before my talk at the gala.

I also managed to get through all three of my events—a book discussion, a visit to a writing class at the university, and the big, fancy gala dinner. I enjoyed all three, and I think I satisfied my audiences at each.

But my tourist expeditions were behind me.

So I spent the rest of my time in Alaska in my hotel room, savoring yet another unexpected aspect of this part of the world. In the dark and the quiet, it is easy to sleep. Your dreams rise and fall like whales, your thoughts beat steadily as the bells of the Northern lights, and your feelings ease through you as subtly as horizon light.

I am no Jack London. I would have made a frail pioneer.

But I’m hoping my host asks me back, and I’m told they probably will. I’ll be keeping my sense of adventure warm until then.

The sky in Fairbanks, 12:30 PM

The sky - and blue snow - 3 PM


The sky, 5:15 PM


Polar bear and seals in Museum

Muskox, from Museum. These prehistoric animals still exist in Alaska.


Alaskan artwork - masks

Alaskan artwork - masks

Alaskan art - miniature carvings made from ivory


Alaskan art - miniatures carved out of ivory


Alaskan art - carved animals (the brown one is from whale bone). This photo is Hal's favorite.

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Tags: Alaska, developmental disablities, disability, friendship, hope, Rachel Simon, Riding The Bus With My Sister, travel
Posted in Rachel's adventures on the road, Uncategorized | 19 Comments »

An Illumination On DD Awareness Day

Monday, May 31st, 2010
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Postcard from the Buffalo airport

We got out of the car in the dark. Despite the lights on the pathway from the parking lot, the only hint we had of the legendary magnificence that lay beyond the trees was an enormous cloud of mist. It hovered in the sky, beckoning like a party of genies just released from their bottles. Only as my new friend Linda led me toward the ridge until we could see the teeming waters of the river did I hear the roar of Niagara Falls.

I’d forgotten, when I’d arrived at the airport in Buffalo earlier that afternoon, that the event I’d be attending the next day was located less than an hour from one of the great natural wonders of the world. I’d been focused instead on my upcoming responsibilities at the twenty-second annual Developmental Disabilities Awareness Day, a hugely successful conference in western New York state. As the author of a memoir about life with my sister, Riding The Bus With My Sister, I’d been invited to give the keynote address, then run a workshop and sign books. I’ve done many such events, but as every person is unique, so is every conference. For one thing, DD Day, as it’s known, regularly attracts about 1,500 people, a more sizable crowd than I usually address. For another, the participants include so many adults with special needs, they might well outnumber the professionals, family members, and children with disabilities in attendance. I rarely see that kind of proportion, and for the whole flight to Buffalo, I was excited.

Certainly I know many adults with disabilities, from my sister Beth and her boyfriend Jesse to many individuals I have met when I speak. But I never cease to be amazed at how common it is for people who aren’t in the disability community to think that “person with a disability” equals “child with a disability.” The idea that the child will become an adult doesn’t seem to occur to them. Their thoughts, like special ed, seem to stop at age twenty-one.

My new friend Linda was on the committee that organized DD Day, and after she got me at the airport, then took me out to have dinner with others from the committee, she asked if I wanted to see Niagara Falls. I’d been there one night thirty years ago, but with out-of-towners like me, and we hadn’t remotely understood what we were seeing. Linda had grown up in this world, so when she offered to be my guide, I said yes.

In the dark, she continued to lead me down the pathway toward the Niagara River. I could see the rapids now, careening toward what she explained were the Horseshoe Falls, and although they were not yet visible from where we stood, and were better viewed from the Canadian side anyway, I understood that their massive power was the source of the mist. We wove through patches of tourists, listening to the screeching of frenzied gulls circling above the water, smelling fish.

The Niagara River at night, with full moon

We reached the railing. The river was only a few feet beneath where we stood, and in the dark, under a full moon, it coursed black and ghostly and faster than any river I’d ever seen. I could make out the horizon where it began, but had no way of gauging its depth. If Linda hadn’t been with me, explaining the geography before my eyes, I’d have thought that the ledge to our right was not the drop-off point for one of the most majestic sights a person might ever see, but the end of the earth.

A few years ago, I gave a talk for an agency in Erie, PA that provides specialized residential care for adults with developmental disabilities who might also be medically fragile. I met several adults in their group home, and was impressed at how full of life each was, with habits that made them happy and games they enjoyed playing and chairs they loved to sit in. When I came home, bursting with pleasure about this agency and these individuals, I told a colleague at the college where I was teaching about where I’d just been. He listened distractedly, then made a correction. “You mean children,” he said. “No,” I said. “They’re adults.” His face went blank. I said, “When children with special needs get older, they still need services.” His face stayed blank, and as I backed away from the conversation, I thought, Could he really not understand that children with disabilities grow up—into adults with disabilities?

When I encounter this attitude, I try to be sympathetic. I know that, despite the growing presence of adults with disabilities in the workforce, on television, and in the community, many people still think that “special needs” equals “children.” I also know this can be as true for people like my colleague as for young parents whose child has just gotten a diagnosis they never imagined they’d hear. I meet these parents a lot. They’ve just been thrown into a world that’s unknown to them. It looks dark, foreboding, and overwhelming. Where are they going? they ask themselves. How will they find their way? What could it possibly look like when they get there?

Niagara Falls at night, looking toward the American Falls

Beside the Niagara River, under the full moon, Linda continued to guide me along the railing. The Canadian side, she told me, bathed the Horseshoe Falls with colored lights, but all I could see as we moved was the mist. It so fully engulfed the Falls that we walked for many yards before we could see anything again. Then it was the river, now hundreds of feet below, and far downstream, the other falls for which this landmark is renowned. The American Falls were easier to see, but too far away to admire.

“I wish I could see all of this better,” I told Linda as we made our way back to her car.

“You’ll just have to come back in the daytime,” she said.

It sounded good, but how was I to do that? The next day was devoted to the conference, and my flight home was set for the following morning.

I forgot about Niagara Falls as soon as I went to bed. It did return briefly to my thoughts when I woke up, dressed for my talk, and made my way to the conference center. But as soon as I was enveloped by the crowd, I forgot even that I was in New York state. Instead, I was in a world that transcended all the boundaries, including ethnicity, class, and age. This is one of the great truths of disability: it can happen to any person, in any family, at any time. None of us is so special that we might never have special needs.

Some people, like, perhaps my old colleague, or parents newly entering the disability world, might find that truth frightening. As a sibling, I find it comforting. Yes, it means everyone is vulnerable. But it also means the human race has fewer divisions than we sometimes think. So friends, guides, even role models might already be around us, if we allow ourselves to see.

Me on stage during DD Awareness Day

Then I was swept up in the day. I shook hands with dozens of adults with disabilities, many of whom were involved in the self-advocacy movement. I got on the stage and did my talk, looking out into a room of all ethnicities, classes, and ages. I gave a workshop, and attended others. I stood at the book signing table and hugged parents, siblings, professionals—and individuals with disabilities.

And here’s what I saw as the day progressed, all of it with people who had once been children with disabilities and grown to become adults.

A happily married couple

Faces Bell Choir, which sounded like Heaven

Sujeet Desai, who plays six instruments

Universal Mind, a cover band that could take over any bar...

...and who has a performer Mick Jagger would envy

If only every young parent could be here, I thought, as the day wore on. The fear would start to recede. The darkness would lift.

“So,” Linda said as the conference drew to a close, “do you want to go back to the Falls?”

We had just shuttled another speaker—a media advocate who’s the mother of a Hollywood actor with Down Syndrome—to the airport, and I was ready to get back to the hotel and collapse. But the sun was still up. And if I didn’t take this opportunity now, I might not get the chance again.

So for the second time in twenty-four hours, I stepped out of Linda’s car at Niagara Falls. The river was still a roar, and the falls were still a force. But now I could see that the water wasn’t very deep. I could see infra-structure I hadn’t noticed. I could see that Linda had become someone I trusted. Together we moved along the path toward the American Falls, until they were not too far away to admire.

“I wish everyone I know could see this,” I said. Then we looked out to the water and put our arms around each other, and I saw so much that I hadn’t known to see.

Me with Linda Szmanda at the American Falls in the daylight

Many thanks to the committee who invited me to DD Day, which includes, left to right, Linda Szmanda and Kim Palermo of Community Services for the Developmentally Disabled, and Wendy McCarthy of DDAWNY

Thank you, Dawn Everett and Joanie Kerr, from Barnes & Noble in Amherst, NY, for running my book signing

A round of thanks to Helen Holtz, from Community Services for the Developmentally Disabled, for assisting me throughout the day - and taking many of these terrific pictures

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Tags: community, developmental disablities, disability, Family, parents of children with special needs, Riding The Bus With My Sister, special needs
Posted in People in the disability community, Rachel's adventures on the road | 13 Comments »

It Takes A Village To Help A Sister

Monday, May 17th, 2010
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My sister Beth, earlier this spring


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.”

Beth, after her fall and day in the hospital

Those gloriously colorful toenails

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Tags: Cool Beth, Family, help, hope, it takes a village, love, parents of children with special needs, Riding The Bus With My Sister, siblings, sister, special needs
Posted in People in the disability community, Rachel's Family | 37 Comments »

A Magical Trip To Orlando

Friday, March 26th, 2010
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Last week, I had a magical trip to Orlando.  Yes, I was in Disneyworld, but I was not there for vacation.

The main reason I went to Orlando was to do a presentation at the National Council for Community Behavior Healthcare Conference.  Since we still had snow on the ground in Delaware and the temperature in Orlando was seventy degrees, I was particularly happy to go.

My host was Core Solutions, a software company for the behavioral health and human services industries.  I appeared for a special event in their hospitality suite, where I showed clips from the movie adapted from Riding The Bus With My Sister, talked about the real experience I wrote about in that book, and signed complimentary copies of my book.  The attendees included the parent of a woman with disabilities and a self-advocate, both of whom shared their own stories.  As often happens at these events, I laughed and I cried, and I came away deeply moved.

But there was an additional reason for why my trip was more than just memorable – it was magical.

For the past several months, I’ve been corresponding with one of my readers, Lily Grinsberg.  The mother of three sons, two of whom have disabilities, Lily is devoted to exploring all avenues to help her children.  She also wants to share her insights, so she runs programs where she talks with guests about her recent discoveries.  (You can read more about her on her Double Rainbow website.)  As luck would have it, when I went to this conference, she happened to be in Orlando with her family for a vacation – the twenty-eighth one they’ve taken to Disneyworld!  We arranged to visit.

We met in her hotel lobby, falling into a big hug as if we were old friends – which, because she knows me through my books, and I know her through her life mission, we pretty much are.  After so many emails, I finally got the chance to hear her story in person, and to learn about the many fascinating things she’s involved with.  These include Nordorff Robbins Music Therapy, a music therapy that nurtures people of all levels of ability to build well-being; Camp Acorn, a recreational program that builds confidence and self-esteem in children and adults with multiple disabilities; and Radiant Awareness, a form of therapy that inspires joyful awakenings and inner connection.  All of them look terrific.  (For contact information about Nordorff Robbins, see the comments for this post.)

Then we went to dinner, and I got to meet her whole family.  The love in this family is a sight to behold.  The father spontaneously hugs his sons.  The typical son shares a close bond with his brothers.  And everyone is close to the personal assistant for the oldest son.

Here’s a photo of Lily’s son, meeting up with Donald Duck, followed by a photo of Lily and me.

How quickly a duck can interrupt your meal

A magical meeting in Disneyworld

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Tags: disability, Disneyworld, Family, friendship, parents of children with special needs, Rachel Simon, Riding The Bus With My Sister
Posted in People in the disability community, Rachel's adventures on the road | 4 Comments »

Who am I?

Tuesday, March 23rd, 2010
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People often ask what my life is like.

The honest answer is it’s lacking in drama and steeped in routine, both of which help me stay on track with my writing.  I know that the image of a tranquil life with a lot of consistency is at odds with the myth of the emotionally overwrought writer who lives to excess and hobnobs with celebrities.  But I like telling the truth, so here are a few broad strokes to give you a sense of my life.

Rachel Simon at Longwood Gardens

I live in a row house in Delaware with my husband Hal and our two cats, Peach and Zeebee.  Our marriage, which came about after a nineteen-year courtship I chronicled in my memoirs, is a happy and enriching one.  We laugh a lot, prop each other up when we feel low, and give each other a lot of privacy for our respective creative endeavors.  When we disagree, we try to do so in a respectful and productive manner.

I make my own schedule, since I don’t have a day job right now.  I get up with the sun, write as much as I can, and do my best to keep up with emails, letters, and phone calls.

Every day I try to work out, and once a week I volunteer for hospice.

I treasure long-term relationships.  I’m still close to my best friends from nursery school, fifth grade, sixth grade, junior high, boarding school, college, and many of the jobs and twists in my life since then.  I’m also close to a number of people I’ve met in my trips to give talks related to my memoir Riding The Bus With My Sister.

I don’t drink, use substances, eat meat, watch TV, or feel comfortable in loud spaces, including stores and restaurants where music is played at high volume.

To stick with my writing routine, I prefer meeting people in the evenings rather than at lunch.  To be kind to both my waistline and wallet, I prefer visits over tea rather than dinners.

I like almost everyone I’ve ever met.  I find every person interesting.

I like to talk but I love to listen.

I wake up a lot in the middle of the night and worry.   Then I fall back asleep, and in the morning, I wake up happy.

Most days, I’m very content with my life.  I’m less content about the state of the world.

I walk around with a cast of characters in my head: everyone I’ve known in person, and many others who are entirely fictional and have yet to emerge from my pen.

I write by hand.

I write because I enjoy the act of writing.  I finish my writing projects because life is brief.

I don’t see much of a division between past and present, and can wake up fully immersed in other time periods I’ve lived in.

I’m slightly synesthesic.  Numbers and letters come to me as colors.  Sounds come as emotions.

I’m five feet tall and feel that the benefits of my short stature eclipse the difficulties.

I get cold all the time.  At home I sometimes wear a coat in the house, and when I go out I almost always bring several extra layers of clothes.

I’m not a joiner.  I like living outside life.  Though sometimes when I feel too outside, I get sad.

I try to be open-minded and openhearted.

I believe in the power of forgiveness and the pointlessness of holding grudges.

I believe in the inherent dignity and worth of every human being.

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Tags: happy marriages, love, musings, personal, Rachel Simon, Riding The Bus With My Sister, writers, writing life
Posted in Rachel - General information | 6 Comments »

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The Story Of Beautiful Girl, a new book by Rachel Simon author of Riding the Bus with My Sister

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