Rachel Simon's Blog

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.

Ecard created with Smilebox

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Run toward.

This is a story about how everyone deserves love.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“That’s Rudy,” Michele said.

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

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

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

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

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

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

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

“Sure.”

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

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

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

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

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

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

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

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

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

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

Hal was immediately taken by Rudy.

Michele brought him out of his cage.

And my mother gave him a kiss.

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

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

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

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

I hate to admit this, but I’m not a vacation person.

I understand the attractions of vacation: getting away from routines, obligations, and the familiar. Seeing new landscapes, visiting old friends, returning to beloved terrain. Spending private, leisurely time having serendipitous adventures with my wonderful husband Hal.

All of these things have a great appeal to me. But because, as a writer, I tend to thrive when I adhere to solitude, silence, a slow pace, and discipline, I feel I have to rediscover a social and spontaneous self when I jaunt about on a vacation. That’s not always difficult, and sometimes I quite welcome the shift. However, the backlog of emails and the build-up of obligations, along with a renewed delight in the world of real, rather than imagined, people and experiences, mean I need many more days than I care to admit to return to the quiet place in my mind where I do my work.

Also, for years now I’ve traveled a fair amount to do talks, so I’ve seen all the new landscapes, old friends, and even beloved terrain I might desire- and my hosts pay my way. But vacations cost money – sometimes a lot more money than I feel comfortable spending.

And, on top of all that, sometimes things go wrong. Then there you are, far from home, and paying for the privilege of getting the flu, suffering through car trouble, hiding out from bad weather, losing a favorite possession – or coping with the likes of something you never even dreamed you might deal with.

But the one compelling reason for me to set all these concerns aside is that Hal likes to get away now and then, and, as I mentioned, when we’re away together, we allow ourselves to wander around back streets, engage in lengthy conversations with gregarious strangers, poke around in quirky shops and museums, and open our minds, and hearts, to so much we don’t usually see.

This past summer, Hal proposed that we make a trip to Charlottesville, VA. He went to college at the University of Virginia, and since he took off five years in the middle of his undergraduate career, during which time he lived in town and managed the pre-eminent record store of that era, Back Alley Disks, he still has friends in the area, as well as the type of fondness we all have for the place that bestowed a bounty of pleasing memories in our youth. My affection for Charlottesville is more subdued, though I do find its historic buildings attractive and its rolling hills restorative. I also happen to have an emotional tie there: a close friend from seventh grade moved to Charlottesville after high school.

But nothing beats visiting a place where your spouse gushes loving memories every few feet, catches up with people who’ve been dear to him for decades, and feels a sense of peace simply by breathing the air.

So every few years we take a trip to Charlottesville, and this summer was one of those years.

In May, Hal asked me when I’d be free during the summer. I told him the few dates when I had speaking commitments but otherwise the calendar was open. He then narrowed it down by seeing what interfered least with his responsibilities at work. Finally we picked the dates of Aug. 12 to 17. Hal filled out the forms at work to get official approval. We booked the hotel. We emailed our friends and scheduled our visits.

And then something happened that I never could have dreamed of. Three weeks before we were to leave, the person who handles my speaking engagements called. We’d just received an invitation for me to come to Casper, Wyoming to speak to special education teachers. “When,” I asked. “August.” “What’s the date?” I said, getting nervous. “August 16th.”

Oh no! Could Hal’s work responsibilities allow for us to change the dates?

No.

Did the folks in Casper have the flexibility to change the date?

No.

Should we just give up on our vacation?

Definitely no.

So we decided to compress our tiny, long-awaited, five-day vacation into a mini, two-day vacation. We’d wedge in as much vacation pleasure as we could, and then I’d hop on a plane – or, really, three planes, starting in the little airport in Charlottesville and landing in the little airport in Casper – to do my talk. And although we wouldn’t be together for the second half of our truncated vacation, we would continue the same spirit of adventure and openness.

Yes, something had gone wrong. But like many people who’ve had things go wrong on vacations – and, at some point, doesn’t that include all of us? – we decided to have wonderful experiences anyway.

And so we did.

If you, like me, are the brother or sister of a person with a disability, you have concerns, emotions, and maybe even responsibilities that the siblings of typical individuals don’t contend with.

You might have protected your brother or sister from the neighborhood bully when growing up. Or resented that they didn’t have any chores when you had several. Or relished the contagious glee they expressed when they won a round of Go Fish, or danced in the living room, or greeted you every time you came home. Or felt guilty that you could ride your bike to see friends while they couldn’t ride a bike and didn’t have friends. Or burst with pride when they reached major milestones that you’d hit many years earlier.

From a very early age, you might have worried about what would happen when your parents died.

From a very early age, your vocabulary included words like “IEP”, “group home”, “sheltered workshop”, and “SSI” – words that your friends didn’t know existed.

From a very early age, you felt older and more mature than your friends.

From a very early age, you knew that sometimes you were called upon to act like a brother or sister, and other times like a parent.

And from a very early age, you looked askance at a world that mistreated, ignored, stereotyped, mocked, and cut the funding for people like your siblings – and you couldn’t, for the life of you, understand how anyone could be so insensitive and even ignorant.

If you’re the sibling of a person with a disability, you would have loved a conference I attended this summer, the first International Sibling Conference, held in Greenwich, CT. For three days in early August, adult siblings from all over the world gathered in the sumptuous Hyatt Regency Greenwich to talk about our worries, support each other emotionally, and make friends in the sibling community. By the time it ended, we knew that, regardless of our personal struggles, we would always have others to turn to.

As at all conferences, the three days were full of receptions, presentations, and panel discussions, and every single event, from the largest addresses to the entire crowd to the smallest and most spontaneous moments in the hotel lobby, led to insights about my own life and connections with so many others. I did already know several people there, having encountered them at previous conferences or in my inbox, but I so enjoyed seeing old friends again – and meeting a ton of others for the first time.

Here is a photographic depiction of some of the high points of the conference, which was the brainchild of the people at ARI of Connecticut, Inc., The Sibling Leadership Network, and the Kennedy Center, Inc. I hope it gives you a good taste of the experience, so that, if you too are a sibling, you can join us when we meet again next year. (Please contact Dr. Bob DiDomenico if you’d like to get notified: didomenicor@arict.org)

International Sibling Conference: Channel 12 News Coverage from John Kramer on Vimeo.

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 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.

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.