April 18, 2011


The following blog entry is not written by me, but rather by a very dear friend named Emily Rapp. I feel compelled to share. I really have no choice but to share it with the world. Her words, heartbreaking and gorgeous, shed light on something unspeakable. Having had serious loss in my own life, I know that her words provide solace to those who feel there is no solace, no hope, that grief may be all they will ever know of this world.

I first met Emily through my friend Amy Dixon who knew Emily because she religiously took Amy’s spinning and fitness classes at Equinox Fitness in Santa Monica. Amy had lent me Emily’s book titled Poster Child and I became instantly inspired by her, before I had even met her.

“Emily Rapp, who had her foot and eventually her entire leg amputated starting in 1978, at age 4, brilliantly succeeds at communicating the pain, shame and profound strangeness she experienced as a young amputee in her memoir Poster Child. Rapp, who was literally a poster child for the March of Dimes at age 6, writes breathtakingly, almost magically, of the world of wooden legs, silicone feet and metal knee hinges that are made in a filthy workshop by a man who has no soap in his bathroom and dying plants in his waiting room.”

— Donna Minkowitz, Newsday

Her book is brilliant. ( She is brilliant.) Emily has one leg and yet, in my yoga class, was one of the most beautiful yogis I had crossed paths with. Still is. Her practice is stunning. Her focus insurmountable. I immediately fell in love with her. Plus, she is a writer, as I am, and has a wicked sense of humor and a penchant for a nice glass of red, as I do. No brainer that we would be friends.

Emily moved away to Santa Fe about 6 months ago much to my personal dismany. Her husband Rick and her sweet baby Ronan resettled with her to New Mexico. A few months ago, I received the first “Little Seal” blog and wept for an entire 2 days. Ronan had been diagnosed with Tay-Sachs disease. Tay-Sachs is a rare, incurable, genetic, progressive disease that will claim Ronan’s life in the next few years. Shortly after his diagnosis, Emily began the Little Seal blog to chronicle her family’s time with Ronan and their struggle with the disease. She is currently Assistant Professor of Creative Writing at the Santa Fe University of Art and Design in Santa Fe, New Mexico.

Before I post the blog I wanted to share that Amy Dixon and myself are flying Emily out from Santa Fe and holding a fundraising spinning and yoga class for her and her family on May 13 at Equinox Santa Monica. It is aptly titled The Ronan-a-thon, as suggested by Emily. If you can attend, please do so by signing up here. If you cannot attend but would still like to donate money please check out Go-Fund -Me here. If nothing else, please read her words and allow yourself to be inspired by her honesty, her beauty and her fierce love for her son Ronan.

Without further ado, here is her latest blog. Please go back and read all of them. This is just a sampling of her talent, her beauty and her pain.


This weekend Ronan had his usual Friday acupuncture with Dr. Janet and his usual long Saturday afternoon walk. He ate his prunes and peas and applesauce and squash and made his usual baby mess. He loves the pink and blue strings from his Wyoming Easter basket. He’s an absolute cuddler; he’ll sit next to me on the couch for hours, in part because it’s becoming more difficult for him to move, although as one Tay-Sachs mom put it, even as their movements become harder and harder to muster, “muster them they do.” I lie on the bed with my arms around him, switch on the mesmerizing dolphin toy with its magical, soothing sounds and pretty soon both of us are snoring, Ronan sitting upright with his fat hands resting on his stomach like a sleepy old man.

Outside it is spring, although little feels new or promising to me. I find myself uninterested in all the warm weather anticipation, although I can’t help but notice a few trees beginning to bloom, the flashes of green and white and pink along the arroyo path. I’d prefer that Ronan and I live alone in a cave (but a cozy one. Are there caves with Santa Fe-style kiva fireplaces? One can dream) on some windswept cliff with a view of the ocean, and only the sounds of the sea animals and the unpredictable waves and Mary Shelley biographies to keep us company. I can’t get enough of the story of this brilliant, melancholic writer who lived through the death of four out of five children (all under three, who died from 1. unknown causes as a newborn, 2. dysentery, and 3. malaria; I don’t know yet what became of the fourth) while gallivanting around Italy with her husband Percy Shelley, a dramatic, willful, passionate, mercurial, and, I would argue, overrated poet, the two of them trailing social scandal and occasionally political havoc in their wake. Mary was already the inheritor of her mother’s depressive tendencies and suffered acutely from her losses. “Grief had, she felt, robbed her face of its bloom.” (Mary Shelley by Miranda Seymour) I find myself more interested in having imaginary conversations with this dead, visionary writer and bereaved mother than with any living person. Me, Ronan, and Mary Shelley’s ghost living on the coast of Donegal in the north of Ireland. Cold, damp, Irish weather that smells like wet wool and hot milk tea. A gray, complicated sky. Sounds about right to me.

Maybe my distrust of all the supposed thrill of newness, all the sunshine and bright chatter of spring, all the old certainties, is my experience of waiting and anticipating an end I grieve a little bit at a time, each day, a little bit more and then this and then this and then that, day after day after day. Where is the relief in all this dread? As expected, it is found in unexpected places.

This week we visited the Kindred Spirits Animal Sanctuary, a hospice care facility for animals. This haven, a wide swath of ranch land in the middle of a wind-swept desert, is owned and operated by Ulla Pederson, a Danish native who has been providing end-of-life care for dogs, horses and poultry for over two decades. We parked near the white ranch gate at the end of a gravel road south of Santa Fe. It was, as Ulla noted, a “blowy” day, and the blue hills in the distance seemed covered in a veil of sand. Ulla, short and strong and with flashing blue eyes, explained that because she grew up on a farm in Denmark, animals have always been an essential part of her life. I wanted to bring Ronan to the Sanctuary because we have no household pets, and I’ve always considered my own experiences with animals, particularly with dogs, to be some of the most profound of my life. (Readers, be warned: this post may get seriously sappy. I can’t even sit through a National Geographic special without bursting into tears.)

First we met Bo, a thirty-year-old horse who was severely abused and now suffers from Cushing’s Disease. A dark head with a white diamond on his nose, he looked like something out of a children’s story with a swayed back and blurry eyes. Ulla fed him part of a carrot from her palm. Bo sniffed Ronan’s head and seemed uninterested. In the corral behind the two stalls spread with fresh straw another horse wandered, Bo’s friend Toki, also 30. “Horses attract abusers,” Ulla explained. “It’s about power.” I didn’t push for additional details. Both horses have been with her for 25 years. A pack of four dogs – a few blind, some with gray-sprinkled muzzles and a few with arthritic back legs – followed us, limping and sniffing us out and then trotting along beside us as we walked to the poultry area. These are just four of the 22 dogs currently living at Kindred Spirits, all of them previously abandoned or abused; some of them, according to Ulla, “because they got a little bit old and the owners couldn’t deal with it.” Others have been kicked or burned or left on the side of the road. The sanctuary receives calls every day. During their first days on the ranch the dogs are often skittish and fearful and terribly sleepy, but eventually, Ulla noted, they feel safe and at home and their personalities bloom. “Some are only with us a short time,” she said, “but we know that those final days are good ones.” At Kindred Spirits, dogs are treated to acupuncture, “brush and cuddle” treatments from volunteers (a group Ronan and I will soon join), and organic food. Very few drugs are used although the dogs suffer ailments ranging from a hanging jaw, blindness, severe arthritis, back and leg issues, and other complications of old age. Each dog “tells” Ulla his or her name, and so Lil Bit Buddha and Anna-Lisa and Oscar and Abuelita and many others wander a yard full of communal dog beds and ragged, hairy blankets and saggy old mattresses: a dog’s paradise. Colorful Buddhist prayer flags swing and flutter from posts and clotheslines. Just outside the entrance to the chicken coop is the memorial shrine for Salvador. A photograph of his golden, smiling face (yes, dogs smile) is propped up against a tree, his collar swinging from one of the sturdier branches. Someone had left a few bones for him. I think of my own various shrines to my dead St. Bernard, Bandit. Framed sketches and drawings of him hang in various rooms of the house. An enormous photograph of him looking regal and serene on a beach in Provincetown hangs above my writing desk; his collar and paw prints are preserved in a glass-covered box. From each dog’s collar hangs a silver medallion with St. Francis on one side and St. Anthony on the other. In the “big dog” room there are bunk beds and dog beds, while the smaller dogs share recliners and small loveseats. Statues of Buddha or St. Francis peek out from beneath scraggly bushes. The ranch was peaceful, if windblown, with barks, whinnies and a riot of quacks ringing through the air at intervals as regular as church bells marking time.

In the first poultry room, old ducks splash in the mud and roosters and chickens gather in various “neighborhoods:” cozy spaces and nests under boxes and other wooden structures. Some of these birds were found along the side of the road in various states of distress; some were found in trashcans. Their sleeping room is lined with photos of chickens as if birds, too, need pin-ups on their bedroom walls. In the second poultry room, protected from birds of prey by a wire “ceiling” over the area, an 18-year-old turkey, like something out of a Thanksgiving pageant, strutted around in his black-and-white speckled glory. “If people are going to eat them they should see them first,” Ulla said. Two regal peacocks were swanning around the volunteer-made wetlands (“Mud is good for birds,” Ulla explained), leaving behind them a trail of delicate, tendril-like green feathers, each with a blue center that reminded me of the “evil eye” medallions for sale on the streets and in the shops of Greece, talismans meant to ward off bad luck. “When they are molting the yard is covered in feathers,” Ulla said, and I imagined the ground swarming with blinking blue eyes, thick with good luck. The peacock made a sharp, shrill sound – part cat, part bird — his pointed beak opening only slightly. I rescued a shed feather and stroked Ronan’s face with it. The day before I had taken him for a hike on the Borrego Trail and shown him a pine needle and brushed the bottoms of his bare chubby feet over the dirt.

Inside the house, volunteers cooked meals and cleaned beds. A small Chihuahua with deformed feet – she was saved from a puppy mill – let us know that this was her territory. Ulla led us to the back room, which, in addition to housing the sanctuary’s newest addition, was lined with memorials and remembrances of each and every animal that had ever lived at the sanctuary. Tiny paw print frames, photos, favorite toys, poems, paintings. “It’s very, very important that each animal be remembered,” Ulla said, and her gentle voice and unassuming manner – this grand but unsentimental acceptance of the good and the bad together – made me believe that she’d been an excellent bereavement counselor, as she had been for many years.

So much has been written about the connections between animals and humans, but before I had Ronan, even though I loved my old dog Bandit fiercely through his various unknown ailments, bladder infections, tumors, incontinence, worms (hook and heart), eye infections, and expensive, late-night vet appointments, I never fully understood this deep connection until now. In some ways, much of Ronan’s experience is at the animal level: immediate touch, taste, sight, sound with no cognitive recall; there is no storing of memories, joyful or fearful or terrifying or liberating or otherwise. Just bald experience that ends as quickly as it begins: a feather brushed against a cheek, a startling sound, the surprise of a new sensation, and then it’s forgotten. Ronan sat on the mattress with Anna-Lisa; Abuelita, trembling though she was, was brave enough to lick his hand with her tiny poodle tongue. A rooster fluttered past his face, his comb a band of color briefly crossing Ronan’s vision. And then? Forgotten. It’s only me who remembers, a necessary if sometimes arduous task.

My friend Tara, years after losing her dog, her apricot-beauty Theda, wrote to me when we were discussing the impossibility of loss and the mind’s stubborn refusal to accept what is so terrible: “Isn’t she just in the next room, right next door?” I thought of this as I looked at the tribute to all these creatures, many of them with unknown histories, but all of them with known ends. All of them loved. We don’t forget after we let go. Tara was exactly right, and both moves – the knowing of the loss and the refusal to fully know it, both of which are different from intellectual acceptance — are part of love.

We’ll be back, to brush and cuddle, to meet the new critters, and, as Ronan’s condition progresses, perhaps to just sit in the lawn and let the dogs surround him, explore, interact, and then, at night, they will sleep their animal dreams under the black dome of sky, in their pack, safe, without remembering Ronan at all. That’s my job. Because Ronan will always be, in some way, right in the other room, in the next room, in every room. Won’t he?

Ronan and Emily at Ronan's acupuncture session

Please RSVP if you are attending the fundraiser class at Equinox Santa Monica May 13 to [email protected]. We want to do all we humanly can to support our friend during this time. We love you Emily, Rick and Ronan.

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