Looking at Kelsey, one might not know that she has a severe and unusual physical disability. She greets me with her open smile, walks to the kitchen, and reaches up into a cabinet to show me her varieties of teas as she offers me a cup. She moves normally and with seeming ease. Only the presence of her service dog Curran, always nearby, hints at anything unusual. So what’s the problem?
Kelsey was born with Ehlers-Danlos Syndrome, a connective tissue disease. “There’s nothing holding my joints in place,” she explains. It makes many common tasks difficult, dangerous, impossible, or simply very painful. Anything that involves moving parts of her body, especially her wrists and ankles, is difficult and can cause pain or injury. She cannot carry large items or walk long distances. If she falls, she cannot get up without special assistance. On her bad days, she is sometimes confined to bed, simply because moving at all is too painful. “I will always live with pain,” she says matter-of-factly.
When she was a teenager, she relates, “I had friends I wanted to hang out with and have fun.” Unfortunately, her doctors told her that to maintain her physical abilities and lead a ‘normal’ life she had to spend all her afterschool hours at the hospital doing physical therapy. The peer pressure was too much for her as a teenager, and “I ended up quitting physical therapy so I could hang out with my friends,” she admits. “I didn’t know how dire a decision that was. For the next six months, I didn’t do any physical therapy. The pain got worse. Fatigue was overwhelming. Any little task took too much energy. I wanted to be a teenager a lot, but I couldn’t be one” in the same way all her friends could.
One doctor suggested a service dog might “help tremendously.” After a chance meeting with a NEADS volunteer and a four-month stint with a different dog that didn’t work out, Kelsey ended up paired with Curran, the black lab who sits at her feet as I interview her. “I didn’t know how much my life would change when I got Curran. My whole outlook was happier.”
Curran helps Kelsey in many ways, both physical and emotional. He is always attentive to her, and knows her so well that he sometimes realizes a developing problem before Kelsey herself. “We have this system of checking in with each other. If my gait changes, or if I’m about to go down and I don’t know it, he can let me know. He puts his muzzle in my hand. I look down to see if there’s something wrong with him, and if there isn’t, I need to check inwardly.”
Curran also can fetch help in an emergency. On one occasion, “I was in the parking lot of our apartment complex. My ankle went out, and I went down and couldn’t get up. Curran started barking. When that didn’t get attention, I told him, ‘Get Ama.’” Curran had been trained to fetch Kelsey’s mother at this command. “He went and stood outside the door and barked. Curran brought her straight to me.
“He’s trained to bark until it’s so annoying that someone comes. I can go out. I don’t need to have my mom there. He’s my security blanket.”
But Curran’s help is more than these physical tasks and security. The emotional benefits he gives Kelsey are immense: he has given her back the motivation she had lost. “He would help me with everyday tasks, but I needed to pay it back by taking him for walks and giving him love. Right, buddy?” She pats Curran affectionately, and he responds by licking her hands. “I didn’t know how much I needed a dog that needed me as much as I needed him. There’s not a day goes by that he doesn’t do something for me.”
Today, Kelsey lives with her mother and Curran. She spends a significant portion of her time on physical therapy. “Being able to put on my own clothes and go up and down stairs outweighs the cons of the work and the pain.” However, she also has time to meet with friends and to create the art she loves so much. She says she has to “find strategies to make it easier for myself. Like, I can’t sketch because I can’t hold the pencil. So I have a tool that holds the pencil and my hand together, so I don’t have to use my muscles to hold it.”
Four years later, she looks back on those six months without physical therapy, and the addition of Curran to her life, as a turning point. “I needed to be at the bottom before I realized that it was much better to be at the top.
“Don’t give up just because you think it’s hard. You never know, if you get stronger, what you might be able to do.”
For more information on NEADS, the service dog organization that matched Kelsey with Curran, see neads.org.
For more information on Ehlers-Danlos Syndrome, see ednf.org.