Rachel Simon's Blog

When I was a kid, I got tired of the one question clueless adults always seemed to ask little kids: “What do you want to be when you grow up?” Perhaps I’d have felt differently if I’d been born into a world where women had the range of opportunities available now. But in the mid-1960s, when I was entering elementary school, and got pelted with this question entirely too often, the options for girls appeared to be: teacher, nurse, mommy, ballerina. I knew these were the right answers, yet I couldn’t bring myself to say them.

So one day, while my mother insisted that I lie beside her on the sofa while she napped, I came up with an answer that I could live with. I would become a writer.

This response didn’t only put that irritating question to rest, it also gave me a goal. Yes, I would be a writer. From then on, I just worked toward that goal, and nothing ever since has had nearly as much appeal to me.

At the time, though, I didn’t know that writers might have choices, too. Certainly I knew about newspapers, magazines, television, and commercials, though I’m sure I knew nothing about the distinctions between reporter, commentator, advice columnist, feature writer, script writer, copy writer, editor, and all the other possibilities that interest people with writerly inclinations.

The only kind of writing that even crossed my mind was book writing. Perhaps this was because we went to the library every few days, and, in fact, my mother was studying for a Masters in Library Science. Perhaps it was because, while there were newspapers and magazines strewn about the house, they were far outnumbered by books. Or perhaps it was because something in me just knew that the long form matched something in my spirit.

Once the idea took hold, it never left.

As I grew into my teens, I did try poetry and plays, but I always returned to book writing. I wrote several novels, or, to be more accurate, novellas. Even short stories seemed more appealing when I pulled several together to make a collection. I simply preferred to settle into my ideas and stay with them for months at a time.

I’m not sure why. I just enjoyed the slow, steady pace of long works.

The years passed. I became an adult and I published several books. I also tried my hand at shorter forms, and for a while I wrote commentary for The Philadelphia Inquirer. I enjoyed the quick bursts of ideas and energy that those pieces required, and they did keep me going between books, but I couldn’t wait to get back. It was like the difference between speed dating and marriage. The novelty and rapidity of the former brought sparkle to the few hours I needed for each piece. But the contemplative comforts of the latter brought new depths to my soul.

Then came the blog.

It was a new kind of short form. It didn’t have to be commentary – or reporting, or advice, or anything in particular. The only requirement was brevity. Which is a tricky proposition for someone who favors length.

I resisted starting a blog for a long time. In fact, it was so long that by the time friends, acquaintances, and publishers had convinced me to start one, the form had almost been left in the dust by an even shorter form, Twitter. Oddly, I took to the miniature quality of Tweets more easily than the comparatively gargantuan blogs. But I needed to have a blog, people said. And, despite feeling constrained, I found that if I wrote them as if they were personal essays, I loved producing them – even if some ended up being longer than people expect for a blog.

“I really liked your last blog,” came a typical email from a relative who will go unnamed, but whose birthdays I’ve acknowledged every year I’ve been alive. “But I read it when I’m at work, and I just can’t put in that kind of time. Can’t you write shorter?”

“I’ll try,” I wrote back. And I did. But the next entry would be even longer.

“I’m just doomed to be a book writer,” I’d bemoan to my husband Hal.

“So what?”

“But there are so many people – like my [intentionally left blank] who want me to write more succinctly than I seem able to do.”

“Do it the way you want.”

“And also, to do them justice, they’re taking me hours. Well, actually days.”

“I know. I see it happening.”

“And I don’t know that I can keep taking that time.”

“So take a break,” he said. “Don’t keep up with your blog. Think of it as a writer’s vacation.”

Coincidentally, this conversation occurred right at the start of this summer. I’d just begun to sink into a new long writing project, and didn’t want to interrupt it to answer emails, much less craft a meaningful blog.

Before I knew it, a month had passed.

Two months.

I did a lot of travel. Hal and I had some unexpected adventures.

Three months.

Finally I decided that for the time being, I would shift my blog from being modeled on the personal essay to being more like a photo essay. So this entry is both a confession of my struggle to adhere to the requirements of this form – and an introduction to the next several posts, which will will take you through my summer in the form of brief photo narratives.

So Unnamed Relative and the many friends who’ve asked why I haven’t posted anything, you can consider this switch being for you.

But it is also for the little girl I was back that day when my mother was asleep and I was trying to figure out what I wanted to be when I grew up. At the time, that little girl read lots of books. They all had words – but they also all had pictures.

And here were some of my favorites.

Everyone’s talking about Shirley Sherrod right now. Not only is this former Agriculture Department official the latest in a series of unknown individuals to find herself cannon-shot to the top of the most emailed news items in the country. She is also the subject of one analysis after another about just what her tale has revealed about our culture.

As we all came to learn, the clip we saw of Shirley Sherrod was not a statement of who she is. It was just the first paragraph of the story she was telling. Breitbart and company were conscious of the fact that they were presenting only that first paragraph. So why was so much of the country, not to mention the administration, so ready to buy what they were saying?

Yes, it’s partially about us not being in a post-racial world. It’s partially about the cleverness of the right wing media machine, the timidity of the Obama administration, and the effectiveness of highly selective video clips.

But I think it’s also about the growing tendency we have as a society to think in terms of nuggets of information, sound bytes, Wikipedia entries, bullet points, and the like – and to glaze over when faced with an actual story.

The initial clip wasn’t only a short glimpse of a longer talk. It was an early moment in a longer story: the moment when the protagonist reveals the shortcomings in her character that will be challenged by the story that lies ahead. It is like the moment when we realize that Nick Carroway is dazzled by the mysterious and charismatic Jay Gatsby. When we understand that Ebenezer Scrooge is a heartless miser who disdains every aspect of Christmas day. When a bitter Rick, who runs a cafe in Casablanca, insists that he is neutral on all matters involving war.

Yet the original assumption made by so many of my fellow citizens was that there was no story. The clip was it, clean and simple. If there was more, it would be only more of the same. It couldn’t possibly be a story.

Why was this assumption made? As a writer of memoirs and novels, I think a great deal about how stories develop from a starting point through an increasingly complex middle to an ending point. This was true of stories in the oral tradition before the advent of writing, and it’s still true of many stories now. My own pet theory about why we’ve always organized experience into story is that story is at the essence of our humanity: we are born, we go through an increasingly complex middle, and we die. Each of our lives is a story.

To my recollection, when I was starting out as a writer in the late 1980s, the average person spent much more time reading books and newspaper stories, listening to friends tell stories, and sitting through a movie from beginning to end. The kind of interruptions we have today – incoming email, ringing cell phones, beeping text messages – didn’t exist. Certainly people were getting phone calls and using the remote control, but it seems that patience was more widespread. When people sat down for a story, there was the expectation that there was much more to the story than the beginning, or any single moment, and that they needed to let things unfold to take it all in.

There were also more stories, at least in print. Back then, when I told people I wanted to be a writer, they assumed, correctly, that I meant a writer of fiction. Now, when I say I am a writer, they assume I write short, informational, skimmable pieces that rely on bullet points and are about very familiar topics: health, style, sports, parenting. In other words, the kind of categories that are easily searchable, and the kind of articles that deliver facts or advice. The assumption is that readers should expect to parachute into what I write on any sentence, and link away from it on any other. The assumption is not that there are some forms of communication that can’t truly be understood without a commitment from first word to last – and yes, without bullet points and without skimmable middles.

I also noticed, in the years when I was teaching writing on the college level, that every fall I had more students who didn’t quite understand what a story was. They got that it presented a situation. But the idea that the character would go through a series of events – or even one – and would come out changed (or making a decision to remain unchanged), was new to them. It seemed they’d spent so much of their young lives listening to and watching people state positions, rather than tell stories that called those positions into question, that they couldn’t get their minds to work any other way.

In addition, I started to notice that when I asked people if they’d read such and such books, they sometimes said yes when really they’d meant that they’d leafed through. Once I asked a friend if he’d read a certain large book that was popular at the time. He said he had, but when I asked him what he liked about it, he groped so inarticulately for an answer that I said, “Wait. I thought you said you’d read it.” He responded, with a defensive tone in his voice, “Well, not every page.”

As one friend of mine pointed out when we were discussing the Shirley Sherrod incident, “Our country is still very racist and a great deal of the racism is because we don’t hear the whole story. A story has many parts.” I agree. Without getting the whole story, we allow racism – and so many other quick and easy judgments – to thrive. We do our fellow humans a disservice and an injustice.

We need to be careful. The people who show us clips in the interest of making a quick point know that many of us are have lost the patience we once gave to stories, and are willing to accept a single moment as representative of the whole. They also know that many in the media are so overworked that they might just present the same clip, with the same point, without any independent examination.

Shirley Sherrod is not the first person to suffer because of someone exploiting our impatience. But maybe her tale can make us remind ourselves, consciously and loudly and as a culture, that when we see a disturbing excerpt of a longer presentation, someone might be trying to manipulate us.

If we don’t remember that, then we’re talking about a lot more than race, media, or politics. We’re talking about our very humanity.

We are Speaking For Ourselves
Speaking For Ourselves
No one else can do as well
Speaking For Ourselves

This was the chorus I heard as I reached for the ballroom doors, the voices within singing loud and proud. I was a little tired from getting up early and driving to this conference in Harrisburg, but the joy I felt at hearing a hundred fifty voices singing this anthem made me glad I’d decided to arrive early. As the lunchtime speaker, I wasn’t due for a few hours, but I wanted to be present for as much of the day as I could. This was not because the organization was kicking off its annual gathering with a rousing sing-along led by a guitar-wielding songwriter – something that might well happen at public events with a political twist just about every day. Nor was it because this group consisted of grown men and women with intellectual disabilities – a demographic with which I’ve been familiar since my sister Beth entered her own adult years.

It was because this was a conference of self-advocates: individuals with developmental disabilities who are using their voices to fight for their own civil rights.

The group continues to sing:
Once I was afraid to speak
I was lonely I was weak
With a voice so very small
That I had not voice at all

Then I found a friend like me
And another made us three
And we laughed and then we cried
And then this is what we tried

I first learned about the self-advocacy movement about nine years ago. Perhaps because I grew up in the civil rights era and admired Dr. Martin Luther King, Jr., perhaps because of my sister, it always made sense to me that people with disabilities deserved respect and opportunity, the freedom not to be discriminated against, and the right to live outside the walls of institutions. When I reached middle age and had my awareness raised by joining my sister in her favorite pastime, riding city buses, I also came to embrace the idea of self-determination, which says that people with disabilities have the right to make their own choices about their own lives.

But until I learned about the self-advocate movement, I hadn’t recognized that individuals with disabilities could be their own Dr. King. They could form and run their own organizations in which they could advocate for themselves. Maybe they’d do so with a relative or friend at their side, maybe not. But they’d use their own voices – or, when necessary, assistive devices – to speak to legislators, educate the public, wage battles for employment, transportation, and funding, and fight for the permanent closing of institutions.

The national self-advocacy organization is SABE, which stands for Self-Advocates Becoming Empowered.

The organization on the other side of these ballroom doors is the major self-advocacy organization in Pennsylvania. It’s called Speaking For Ourselves.

And I step into the room as the song Speaking For Ourselves reaches its final verse.

We’ve been called by many names
We’ve been made to feel ashamed
We’ve been locked behind a door
But we’ll come outside once more

We are Speaking For Ourselves
Speaking For Ourselves
No one else can speak as well
Speaking For Ourselves
- Speaking For Ourselves, by Karl Williams

If you think that people with intellectual disabilities are, by definition, incapable of political engagement, you should have stood beside me for the next few hours. You would have mingled with these people, among others:

In 2010, Frank Yurick was voted co-President of Speaking For Ourselves. He’s run training programs for Speaking For Ourselves to help people find services, resist abusers, and speak up to enhance their quality of life. He also works for Liberty Resources as an attendant for a person with a disability.

Since 2006, Debbie Robinson has been the Executive Director of Speaking For Ourselves. Debbie once attended a White House meeting with President Bill Clinton, where she told him “When you give talks on TV, you don’t talk about disability issues. You need to bring this up more to the public. We need to hear your voice supporting us and the ADA.” The President said, “You are right. I need to do more on that.”

Sara Wolff is a motivational speaker who has given talks at schools, churches, and business and community organizations. Sara is a law clerk at O’Malley & Langan Law Offices who has organized a buddy walk, made a PSA video, been featured in such magazines as Allure, Glamour, Vogue, Self and Lucky, and serves on three boards. During the course of her work, she has met Barbara Walters, Meredith Viera, and Dwayne “The Rock” Johnson. She is also an aspiring writer who is interested in writing short stories.

Bill Krebs is working with Blue Fire Consulting on a project called Beyond Tokenism, which helps people with disabilities to be truly included on boards of advocacy organizations without being tokens. Bill sees board inclusion as being on a football field with the object of the game being to go from one end to the other getting through defense – and then to score. Bill isn’t afraid to speak what’s on his mind; that’s why his nickname is Trouble.

Jody Saitsky, a strong self-advocate, is Vice President of the Philadelphia chapter, and well-known for her cooking.

Marjorie Bungard is on the Board of Speakings For Ourselves. She is part of the planned advisory committee under the developmental programs, and was appointed by Deputy Kevin Casey. She also started the Mon Valley Chapter of Speaking For Ourselves over twenty years ago.

Karl Williams is the singer-songwriter who led the sing-along at the opening session. His compositions, two of which I’ve included here, are the soundtrack for the self-advocacy moment. He also wrote down the words of Roland Johnson, one of the pioneers of the self-advocacy movement, for Roland’s autobiography, Lost In A Desert World.

There were so many more people I wanted to meet. I wanted to hear their stories, find out about their advocacy work, and just spend time in their company. I also wanted to attend more sessions at the conference – there was so much about self-advocacy for me to learn!

But my sister Beth lives a few hours away, and I’d made a date to visit. We weren’t going to ride the buses; we were going to her favorite restaurant for her favorite ice-cream, mint chocolate chip, then back to her apartment to watch a favorite TV show, Family Feud, while engaging in one of her favorite activities: me scratching her back.

Beth has not gotten involved with the self-advocacy movement, but she certainly lives in a self-determined way.

So I had to leave the conference a few hours before it ended. But I left in high spirits, revved up by the commitment to social justice I’d seen all around me, and the sense that everyone – especially those who might never have been listened to before – deserves to be heard in this world.

And yes, not just by a sister.

But by a celebrity.

A business leader.

A president.

We will stand up for our rights
We will stand and tell what’s true
We will show the world
All that we can do
- People First, by Karl Williams

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

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

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

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

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

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

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

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

The elevator doors open.

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

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

Anne takes me through my tour.

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

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

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

But I do not see tears today.

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

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

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

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

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

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

“Why do you do it?” people ask.

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

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

I do it because everyone deserves to be heard.

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

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

We’re in a time when the bad news just won’t stop gushing. So what can we do to resist hopelessness, despair, and grouchiness about the state of the world?

Celebrate babies!

That was the idea dreamed up by two of my neighbors, Lyn Doto and Bill Montgomery, when they realized that our already fabulous neighborhood – Midtown Brandywine, in Wilmington, Delaware – was in the midst of a baby boom. I don’t know why I hadn’t realized it until their invitation slid through our mail slot, but it’s true; the last few months have brought us almost a dozen babies and pregnancies. So last weekend, Lyn and Bill threw a party to welcome all these giggling, squirming, thumb-sucking, wide-eyed, and sleeping new individuals to our community. The main guest of honor was a six-week-old, Ethan (along with daddy Bob and mommy Amie), but as we all poured into Lyn and Bill’s house, we delighted in everyone there.

And almost everyone in our neighborhood was there! How incredible is that, given that the party was at ten a.m. on a Sunday?

But I live in an extraordinary neighborhood. People hang out on porches, have long conversations on the street, help each other shovel snow in the winter, watch movies projected onto walls in the summer, and throw parties all year round. Most of the houses are over a hundred years old, most of the trees are leafy and tall, most of the sidewalks are brick. Many of the residents are involved in the arts; our neighbors paint, work in theatre, do photography, make animation, write lively blogs, produce television shows, work on films – you name it. We also have community leaders, with some involved in their churches, others in city government. Others are marathon runners, long-distance bicyclists, lawyers, engineers, postal workers – and, of course, front porch pontificators.

It’s such a great neighborhood, it was recently the subject of a feature article in Delaware’s premiere newspaper, The News Journal. It’s also why, when I got married and was unenthusiastic about the house my husband had bought in this neighborhood, we decided to fix it up and stay. In fact, the friendliness of our neighborhood led me to write my most recent book, The House On Teacher’s Lane, which is about how we repaired and rejuvenated our house – and our relationship – so we could stay right here.

As I wrote in that book when speaking about my neighbors: “We know all their names. We have spoken with them in shorts and bad hair, in down coats and good spirits, with groceries in our hands and worries on their minds, in front of the mural a resident artist painted on his wall and beside the toy truck the little boy plays with across the street. Newcomers or old-timers, black or white, gay or straight, corporate or Bohemian, they are talkative and open….We live…right in the middle of the very characteristic that everyone seeks but that’s never a parameter on real estate Websites: an actual community.”

I know, in our world of bad news – and people living isolated lives, wondering how to connect face-to-face with even one person whose company they enjoy – this is hard to believe.

But it’s true.

So please join us at our party. And I hope that, by the end of this photo montage of the event, you’ll come to believe in community again – and feel buoyed by the power of babies.

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.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“That doesn’t sound good.”

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

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

“You don’t have to. She’s taking me.”

“Maybe you should go to the hospital.”

“I’m going to the doctor!”

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

“Yeah.”

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

“She’s gonna call so we can’t.”

“Then tell her to call me, okay?”

“Yeah,” she said, and she hung up.

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

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

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

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

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

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

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

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

I chose to be there.

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

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

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

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

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

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

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

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

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

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

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

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

“A driver told me.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The winds came up then. The branches started snapping.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We miss her so, and we always will.

Every wedding is a lacework of stories.

The threads are long and delicate, having survived the hopes and disappointments of previous romances, the fierce friendships of youth, the familial realizations of adolescence, the giddy playmates of childhood, the dependent clasping of infancy. But they don’t stop at birth; every wedding extends far back in time, to relatives known and unknown, whose choices—visiting a particular matchmaker, moving to a new part of the world, taking up a certain line of work—set the course of the bride and groom’s lives. Every wedding, too, encompasses the dreams and disillusionments of the guests who come to the day hoping the happiness they’ve found, or for which they’re still searching, has come to the couple before them.

All these stories come together on a wedding day, and even though no one in the room knows all of them, we see the interweaving occur in front of our eyes, making something beautiful that has never existed before—and, if all goes according to plan, that will never fray or fade.

This is what I thought last week, when I was the matron of honor at my older sister’s wedding.

I didn’t think it on the plane ride from Delaware to Phoenix. My husband Hal and I were caught up in the logistics of seating assignments and arrival times, the pleasures of a layover in my favorite airport, the discomforts of turbulence (for me) and a migraine (for him). Nor did I think it in the two days we had before the wedding, when, having recovered from the flight, we took walks through the sunny valley, trying to remember the names of the plant life we were passing, wondering what words the locals use to describe the brown mountains.

I only began to think about it at the dinner for a dozen friends and family, held the evening before the wedding, when the conversation turned to what advice, if any, each couple at the table would give the almost-newlyweds.

“Forgiveness is important,” one couple said, giving each other knowing glances.

“Remembering that the goal of any argument is win-win, not lose-win,” added someone else.

“Having the ability to laugh at yourself,” said another.

I looked around the table, and understood that we were hearing conclusions reached after long, complicated stories, just like what happened with Hal and me. Then one person recalled how hard the early years of their marriage had been, after their two spools of stories netted together, and they discovered many glitches and snags.

Hal and I discovered the same thing when we laced our lives together. But in our history, that was before we took our vows, in the thirteen years (yes, you read that right) when we lived together. In fact, our imperfect union led us to break up, and only after six years had passed—six years when we each went through many changes—did we come back together and get married. Talk about a lacework of stories when we stood before the justice of the peace!

Our path to marriage was unique, though what couple’s isn’t? Certainly not the people sitting around me at the table. Certainly not my sister and her fiancé.

But none of this really hit me until the ceremony itself.

It was to be a modest gathering, held on the covered terrace of an Italian restaurant, with forty guests. Perhaps because the bride was fifty-two and the groom sixty-one, or perhaps because they prize their network of friends more than ostentation, the flowers, photography, and cake were to be handled by people they’ve laughed, cried, and yardsaled with for years. Hal was given the task of pressing the buttons on the iPod. An acquaintance from my sister’s spiritual group would be administering the vows.

A few hours before the big moment, we met for a rehearsal. Then the bridal party of four drove back to the hotel and got ready.

The bride’s dress, which was sleek, sleeveless, and violet, had been purchased at Ross Dress for Less. The dress for the matron of honor (me), a loose emerald silk two-piece, was sewn by our stepmother. The other two women in the bridal party—the groom’s grown daughter and six-year-old granddaughter—wore blue and purple, respectively, their dresses from Victoria’s Secret and JC Penney.

My sister produced a box with a bouquet for her and me. She placed a wreath of lavender flowers on the granddaughter’s head.

Then we drove back to the restaurant, and parked, as planned, in the back. After two days of wind and cool temperatures, the evening was breezeless and warm. We lined up, hidden behind a corner, the sun not yet set, the guests taking their places on the terrace.

Hal pressed the first song on the iPod. The groom’s favorite musical group is the Carpenters, so the first song was one of theirs, “I Just Fall In Love Again.” As the bridal party stood waiting for our cue, the second song, I imagined the groom and his best man doing the same, on the opposite side of the terrace. In the spirit of colorful frivolity, they both wore purple shirts. The groom also wore a tie chain with the icon of his engineering honor society. An engineer by education, he’s now a defense systems analyst. He was trim and fit in his suit, and his dark hair was neat as always.

Then Hal began the second song. This was by the bride’s favorite group, the Beatles, a preference I happen to share, and as “In My Life” drifted softly over the terrace, I poked my head out of hiding.

There was the woman performing the ceremony, taking her place in the designated alcove on the terrace.

Then came the groom, smiling right at me, walking with his best man.

Then came me, walking toward them, bouquet in hand, cameras flashing beyond the corner of my eye.

And then my almost-brother-in-law’s face lit up. I turned around, and there was my sister, looking more beautiful than I’d ever seen her.

Accompanied by the groom’s daughter and granddaughter, she came to the alcove. The three of us stepped aside. The best man stepped aside. The song came to its end.

And then, after a brief preliminary by the woman running the nuptials, my sister and her almost-husband produced sheets of paper on which they’d written their own vows.

I’d of course known many of my sister’s life threads, but that’s when I remember some of his. His first marriage, which hadn’t gone well, resulted in the daughter beside me. His second marriage, filled with love and respect, ended tragically, when his forty-four-year-old wife died suddenly of a stroke. He then grieved. He tried to date but nothing clicked. He moved to Phoenix to be closer to his newly married daughter and her future children. He settled in, buying a nice house, working at a job that suited his talents.

Then one day after eight years had passed, dearly wanting to talk to his wife once more, he contacted a psychic he’d seen portrayed on television, Allison DuBois. They set up a phone call, then talked for a long time. Most importantly, she impressed upon him that his wife wanted him to have the courage to move on with his life and to be happy again. His wife wanted him to find somebody new. The call left him ready to embrace the next chapter of his life.

Only a month later, my sister paid a regular visit to her financial advisor, a woman, assisted by her daughter, who she’d seen for years. My sister had begun working with the advisor after her divorce from her first husband. She’d told the advisor stories of the men she’d seen since: nice men lacking in ambition, including, for the most part, careers.

After the session ended and my sister left the office, the financial advisor started to think about another client, a defense systems analyst, who was scheduled to come in the following week. She went into see her daughter. “I think these two clients would enjoy each other’s company,” the advisor said. “What do you think?” The daughter immediately said, “I think so, too.”

So the financial advisor played matchmaker.

And my sister met the good man she’d been wanting so long.

And the defense systems analyst met the partner he’d been craving.

And romance enveloped their lives.

The vows complete, my sister and her groom turned to the guests. I turned too, and saw forty smiling faces, forty clapping pairs of hands, forty sets of stories. I watched everyone, and thought of all the histories I knew, and the many I didn’t, and how each of us hoped for this couple to have the best of all we’d ever had, and none of the worst.

Then I saw Hal rising from the iPod with tears in his eyes. Our gazes locked, and the moment froze with it. All of us together, in our messy jumble of losses and dreams, pasts and presents, lessons mastered and lessons just begun. Witnessing love’s needle stitching order into our lives. The glitches might come, the snags might appear. But maybe not. Maybe everything will stay just as it was right then: a beautiful mesh, a perfect design, a delicate lace that’s impervious and strong because at last these lives are woven together.