Disabled Be Damned! How the Human Animal Bond Changed Emily Sciarretta’s Life

Her platform is empowerment. Emily Sciarretta may be in a wheelchair, but nothing keeps this fiery, determined and stylish go-getter from living life to the fullest and finding the sweetness in it. Afflicted in her late-20’s with four serious, congenital diseases that, eventually, took away her ability to walk, Emily had to learn a new way to live. For her, seven year old black Labrador mix service dog, Carmel, has made all the difference.  Sciarretta has made it her mission to spread the word about how the human animal bond changed her life and the powerful relationship between a service dog and their human.

She’ll have a prestigious platform on which to do that. Emily was recently named Ms Wheelchair New York USA. As an ambassador for the national organization, representing the state of New York, Sciarretta has been speaking at facilities where her message of personal strength can impact other paraplegics and quadriplegics, struggling with the loss of the use of limbs and how to make their lives work. “I want people to understand that, whether you’ve had an illness or a horrible accident, whether you’re a para or a quadriplegic, yes, your world has changed and it’s upside down, but your life isn’t over,” she emphasizes. “You have to do things differently, but you can go on; you can exceed whatever expectations you had, just in a different way.”

The organization that changed Emily life in so many ways is Canine Companions for Independence (CCI). Founded in 1975, they are a non-profit organization enhancing the lives of people with disabilities by providing highly trained assistance dogs and ongoing support to ensure the most successful partnerships. It is the largest non-profit provider of assistance dogs, and is recognized worldwide for the excellence of its dogs, and the quality and longevity of the matches it makes between dogs and people.

Emily’s story

Little did she know, but Emily was born with Chiari Malformation 1, EDS Ehlers, SM Syringomyelia, Postural Orthostatic Tachardia Syndrome and Mitral Valve Prolapse. They are all congenital diseases, and several of her relatives have one or the other. “I was the lucky one to get them all!,” she exclaimed, with her trademark sense of humor.

Here’s what each of these conditions are and what they do in the body:

• Chiari Malformation 1: A condition in which the bony space enclosing the lower part of the brain is smaller than normal. Crowding causes the cerebellar tonsils to push through the skull and down into the spinal canal. The herniated tonsils block the normal flow of cerebrospinal fluid (CSF).
• Ehlers~Danlos Syndrome – a group of inherited disorders that affect your connective tissues, primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body. People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin.
• Syringomyelia~a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying a portion of the spinal cord from its center and expanding outward. As a syrinx widens, it compresses and injures nerve fibers that carry information from the brain to the extremities.
• Postural Orthastatic Tachardia Syndrome – an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising.
• Mitral Valve Prolapse – occurs when the valve between your heart’s left upper chamber (left atrium) and the left lower chamber (left ventricle) doesn’t close properly.

Do any of you have any of these or know someone who does?

“Tethered cord syndrome pulled my spine into the wrong place, anchored it there, and that’s why I stopped being able to walk,” Sciarretta shared. When did it start? “I was working, and one day got really dizzy and fell down. A customer caught me before my head hit the ground.  I had to go to the emergency room. I wasn’t speaking properly. I couldn’t even remember my name. It was pretty bad.  I was 28 at the time. After that, I was able to shuffle my feet to walk. Then, one day I stood up, and just fell down. My head connected with the wall. When I went to stand up again, one leg went in one direction and the other went in another.  I couldn’t walk anymore. That was 10 years ago.”  The conditions eventually required Emily to have two brain surgeries, in 2004 and 2005. Recuperating from the last one set the stage to change her life, even more.

Emily meets Carmel, Frank and Bastien

In an absolute meant to be moment, while Emily was in a nursing home recuperating from her second brain surgery, the darnedest thing happened. A lovely woman named Marelene came to visit her with her therapy dog. They got to talking, and Marelene told Emily she had to reach out to Canine Companions for Independence; that it would make a huge difference. Never one to procrastinate, Sciarretta asked a nurse to wheel her over to the computer to investigate. “I realized right there that I had to get a dog from this place because, not only did I know it would change my life, but I believed I would meet someone through the organization,” she confided. “This feeling came to me so strongly, as I was sitting there at the computer. It was one of those moments you can’t explain. Lo and behold, I met Frank a year or so after I got Carmel.” Frank, who has Spina Bifida and is also in a wheelchair, and Emily married last year, with both Carmel and his service dog, Bastien, participating in the ceremony. How lovely is that?! And, of course, there were special collars and leashes created for the occasion.

What is involved in acquiring a service dog through Canine Companions?

Getting a service dog of the caliber of Carmel isn’t easy. It’s a long and intricate process that takes about two years. First, you have to formally apply; the organization wants to make sure you meet the requirements of those who need a service dog.  The application process lasts between 3 – 6 months, on average, before an one can be accepted into the Canine Companions’ program. If accepted, the candidate moves to the waiting list, which can last anywhere from 6 months to 2 ½ years.  Once accepted as a candidate, Canine Companions trains the students how to effectively work an assistance dog during a short and intense two-week period called Team Training. “At the end of that training, they start pairing you off with your dog,” Sciarretta described. “I wanted Carmel, and I was working with her in the classroom.”

Emily got her wish and was paired with Carmel about five years ago. Like all of the Canine Companion dogs, Carmel came knowing 45 commands. Emily taught her about 15 more. “Carmel can pick something up as small as a quarter and bring it to me,” she explained. “She opens my mail. Not only did she change my life when I was having seizures, but once they calmed down, I was able to go out. Before Carmel, people would look at me in my wheelchair with pity. Now, they were looking at Carmel and paying attention to me with my dog, not looking down on me. If I’m in a lot of pain, she knows it. She’ll come over and kiss my nose. I get really bad backaches. Sometimes, she’ll come over and press her body where that pain is; she just knows.”

Canine Companions has a breeding program, volunteer breeder caretakers that provide homes for the breeder dogs and whelp the puppies and volunteer puppy raisers across the nation for socialization and obedience training, before they start their formal training.

All Canine Companions dogs and services are provided free of charge because they’re funded by private contributions. But, it’s expensive to raise and train these dogs, to the tune of about $50,000 per service dog over the course of 18 months. You can learn more about Canine Companions for Independence here.

Educating consumer facilities and the public

Many people claim their dog is a service dog to get the perks. We know this, but may not think of the ramifications until we talk to someone who truly needs a service animal. Emily has talked with many hotel managers, who don’t know how to distinguish a service animal team from someone claiming to be. She sees a real need to educate the hotel industry, as well as the public, on things only someone who is living it knows about what to look for and what the laws are, via the American Disabilities Act (ADA). She is making plans for that during her reign as Miss Wheelchair New York USA.

I wanted to provide some basic info for you on what a service dog is. Thank you to fellow blogger, Bunny Allen, who was kind enough to give me permission to use her infographic. Allen has MS, and her medical alert/mobility service dog, Carma Poodale (who does the actual blogging on her site, Carma Poodle), helps to keep her safe. Bunny advised that not all service animals wear distinguishing vests. Carma wears only a tag. And, sites that claim to offer a registry are scams. They take money and send merchandise like vests to customers, but they don’t ask for verification of disability. These sites are helping those who make false claims they have a service dog, providing them with gear that, to an uneducated eye, can be very misleading.

What is Emily’s style?

This is, after all, a style blog, so I had to ask Emily about her own personal style. She told me that part of empowering herself was to get back to her some of the things she enjoyed in her life before she got sick. Back then, Emily was a singer. She’s good, too! Sciarretta has been making appearances locally to get back into the swing and has also received modeling offers (yes, she’s pretty, too). A clothing line for the elegant outdoors woman called Camo Queens, has enlisted Emily as a model for its new line and she’s loving it!

A still from the Camo Queens shoot

She also participated in an NYC photo shoot for Raw Beauty, an innovative visual arts project designed to celebrate the lives of women with disabilities and, as they describe, “redefining beauty and unleashing potential for all women.” The photography exhibit is a collaboration between photographers and women living with various types of disabilities that showcases their beauty, power and passion. It debuted September 20, 2014 at ACA Galleries in New York City. The funds raised from the launch went to support the Christopher & Dana Reeve Foundation.  The exhibit continues to tour the country.

It’s all part of Emily’s master plan to show others in her position, by example, that they can do things they may not have thought possible.

So, what is her personal style?  “If I had my druthers, I’d never be in a pair of jeans; I love dresses and gowns,” Emily exclaimed. “I love wearing things that are unique and colorful. I love pins; I have some of my Grandma’s. And, I love mixing it up with different styles.”

The beautiful couple, here with Carmel and Bastien.

What is Carmel’s style?

And, that takes us to the ever-growing collection of beautiful collars and leashes that Carmel possesses, thanks to her mom’s sense of style and friend/designer Sharon Romero of Around the Collar.  Bark & Swagger featured the brand last year and we’re fans, too! “I love Sharon,” Emily exclaimed.  “She’s a fantastic person and I love her work. I have six matching collars and leashes of hers for Carmel; ones for different seasons and occasions.” Of course!  And, they’re beautiful.

The latest and very special one commemorates Emily’s title and the ever-present companion who helped get her there. “I wanted her to have a special collar for the event in July,” Sciarretta explained. What she’s referring to are the national championships for Ms Wheelchair USA, taking place in Ohio in July, when Sciarretta’s reign ends. Emily and Carmel will be there, representing the state of New York. And, Carmel will be wearing a gorgeous Around the Collar set, featuring metallic gold, with blue and clear crystals, celebrating both the colors of New York (gold and blue) and the colors of Canine Companions (yellow and blue). Isn’t it stunning?

And, of course, Frank will be there cheering her on. This time, he’ll be with Drew, his new 2 year old yellow Lab mix service dog who just graduated from CCI November 6th. His beloved Bastien passed earlier this year, a very difficult time for Frank. We know how close we get to our fur babies. Imagine the deep bond between a service dog and their human, when that person relies on that dog for so much?

But, Drew officially took his place with the Sciarretta family and he is a gorgeous boy. “He makes me laugh so hard,” Emily said. “He’ll come over and kiss me so much, he gives me a facial!”

Frank & Emily at Dogfest, with Drew and Carmel

Emily Sciarretta continues to share her joy and passion for life, and those who’ve come into contact with her are better off for it. She and Frank both look at the positive side of life and don’t let their circumstances get them down. And, that smile! Emily has a radiant smile she wears often. Some of that hopefulness is in her character and the wonderful relationship with Frank. And, some of it she attributes to her best furry friend, who’s seen her through so much. As Emily likes to say about what service dogs are doing for their humans, “They’re changing our lives, one wag at a time!”

Leaving you with a beautiful piece about the couple and their lives, done by Fios 1 Heroes of Long Island; interview by Jodi Goldberg.

To learn more about Emily.

For more info on Miss Wheelchair USA.

Do you know an inspiring person in a wheelchair? What’s their secret to a fulfilling life?