Posts Tagged ‘Riding The Bus With My Sister’
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 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.”
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.
Event Number 2: JEVS’ Talk and Book Signing
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.
Event Number Three: Nancy’s Lunch Celebration
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
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.
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.
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.
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.
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.
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.
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!”
“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?
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.
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.
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 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.
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.
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.
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.
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.
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?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.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.
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.
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?”
“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.”
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.
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.
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.