Sarah and Ryan Fissella have been together since 2006: she describes herself as “a 14-year-old music groupie” to 18-year-old Ryan’s country music band.
At first, says Sarah, she was attracted to his music. She said they talked after one of his concerts and were surprised by their similarities.
“We lived 45 minutes apart, but we had so much in common,” says Sarah. “Besides the music,” she says, “we both have the same sarcastic humor.”
“We would have these conversations, and I’d walk away thinking, ‘I like him a lot!’”
Little Person, Big Heart
When they met, Ryan was, and is, a “Little Person” and adeptly used a manual wheelchair. “He has a form of dysplasia where his hips and knees couldn’t support much weight,” explains Sarah. “He was in a manual wheelchair but lived in a two-floor home. He could go up and down his stairs. He could go to the bathroom on his own. He could transfer himself,” she says.
Ryan was in a wheelchair, but when he and Sarah started dating in 2006, he was very independent. “I mean, even now, people always tell us that we’re the busiest people that they know because we always are doing things,” They have season passes to the Star Lake Pavilion near us that has all the prominent artists come and do concerts. So we’re we go to many music things still.
Sarah had decided that Ryan was the one for her before she graduated high school. “We would get married someday and have kids and, you know, live happily ever after,” she mused. “Probably what attracted me to him the most was that he cares about people, and he cared about me a lot.”
Ryan proposed at the Carrie Underwood/Hunter Hayes concert at the PPG Paints Arena in November 2012. And we were super excited about it. And most people around us were also very excited,” says Sarah.
They invited more than 300 people to our wedding. They paid for it all, and it was music themed.
“We did get some pushback, or at least I did,” confides Sarah. “I heard things like, ‘You know, if you do this, you’re going to be the one that must cut the grass forever…You’re going to have to do a lot of the manual labor.’”
Sarah always retorted with, “I’m fine with it. We’ll be fine. We’ll get through it.’”
At that time, Ryan was still very independent. “So, it was different than it is now,” admits Sarah.
When he was born, they had told his parents that he was a Little Person, and these things might go wrong in life.
At birth, Ryan’s diagnosis was multiple epiphyseal dysplasia (MED), a form of dwarfism where his legs wouldn’t support the rest of his body. Ryan never let his diagnosis get in his way.
At 18, he was driving, had a job, all these things that he was able to do, even being in a manual wheelchair, whereas some people would have just said, ‘I’m going to be on disability and live that way for the rest of my life.’
Both Hard Workers
“So, I knew that he was a hard worker that, you know, we’d be fine,” reasons Sarah.
And married life was going well. Ryan works for AT&T for their advanced tech support, and Sarah works for Citizens Bank as a banker.
In 2017 the couple decided to take a cruise. They flew to Florida.
“On the cruise Ryan’s leg started to droop,” explains Sarah, “And by the end of the week, he was peeing himself, so we flew home and I had the ambulance take him from the airport to
Ryan met with the orthopedic doctor that he had had as a child, and after some tests, it was decided that it was severe spinal stenosis around the T5, T6 area. The opening there should be size of a quarter, and Ryan’s was the size of a dime.
“it was cutting off his nerves, and that’s why he had these problems. The doctor had decided he would do a laminectomy surgery,” relates Sarah.
Change of Plans
The night before the surgery, another doctor called the surgery off, citing the risk in
intubated Little People.
“We cried about it, knowing that this surgery was what Ryan needed so that he would avoid becoming paralyzed,” says Sarah.
Ryan was sent to UPMC Mercy for rehab, and within two weeks, he was paralyzed from the stomach down.
“While we were in rehab, we did much research and discovered that John Hopkins has a good program for many Little People,” says Sarah. When Ryan was released from UPMC Mercy, the couple started the drives back and forth to Johns Hopkins to qualify for their programs.
Surgery Too Late
John Hopkins did intubate Ryan for the laminectomy, and while the surgery was successful, it had been two months since the initial incident, and he didn’t gain any more function.
So Sarah went from being the wife of a Little Person in a manual wheelchair–someone she fell in love with and “signed up with.” They went on a romantic cruise, and she came back the wife of someone she was still in love with, with the added duties of a full-time caregiver when they were home.
“He went from navigating stairs on his own to not being able to use the upstairs of our home,” says Sarah, sadly. She is also tasked with administering his neurogenic bowel program, his Foley and super-pubic catheters, and helping him with his power wheelchair.
“The power wheelchair weighs 800 lbs., and has limited the places we can go,” laments Sarah. For instance, they can’t visit friends where there are outside stairs , because she can’t get the chair up them. Many “accessible” venues are not power chair accessible.
Caregiver by Fire
“So yeah, I’ve become a hardcore caregiver,” Sarah says, but without a twinge of sorry or pity in her voice.
Both Ryan and Sarah have some misgivings surrounding the fact that UPMKC Mercy turned down his surgery because he is a Little Person. “Whether or not this is a fact, sometimes we feel it could have been prevented had UPMC Mercy done the surgery in 2017,” Ryan says.
Sarah learned all her caregiving skills for Ryan “on the fly” and by learning from the nurses.
“I learned how to transfer using a Hoyer lift (they have one in the home), change catheters, perform his bowel program–now that was hard because I’m squeamish!” she laughs.
Sarah’s modest, but says she’s a pro now, and often helps the nurses out when Ryan needs a hospital stay.
There are times, admits Sarah, when she feels overwhelmed. “I still feel like it’s too much for me sometimes,” she says with Ryan by her side, “But I know I’m responsible for him,” she says.
“I love my husband to death, and I wouldn’t want anything to happen to him,” she professes, and if I’m not going to do it, there would be nobody else to do it for him.”
Sarah feels she should have gone back to school for nursing, “because I learned so much in taking care of him. I feel like I’m better at it than anybody else would be!” She also feels she could step in an take care of others in similar situations.
Busiest Couple¬–Enter Curling
“And even still, even before the paralysis, people always say we are the busiest people they know!”
In 2021 The Fissellas were invited to try curling–there was a wheelchair option and he thought we might enjoy it,” explains Sarah.
Ryan really enjoyed it, and so they joined that summer. First Ryan, and then Sarah. “We’re still relatively new, but we are the kind of people that when we get involved in something, we (laughing), take it over!”
The Fissellas run fundraisers and are both on the board of the club. They travel to tournaments, most recently returning from one near Philadelphia.
“We’ve made a lot of really good friends through curling, and it’s just another thing Ryan and I enjoy doing together.”
They also work full-time. They enjoy concerts. Ryan, after the paralysis, gave up going on active fire duty calls for the Everton Volunteer Fire Company, but he serves as treasurer and helps with fundraising.
In 2018 Ryan attended Next Step in Florida, and now that our own Claire Senita is working to bring Next Step to Pittsburgh, Sarah is planning to help with the fundraising for that endeavor.
Last but certainly not least, the Fissellas are trying to have a family of their own.
Future Family Expansion
“So in high school, I was ready to be a mom,” Sarah shares. “We were starting to try and have a kid (in 2017) And then this all this happened, and our world came crashing down.”
In 2021 the couple again went to John Hopkins. They were able to retrieve 13 eggs from Sarah, but “the morning of my procedure (told me) that they found no sperm, he shares. “So I was devastated. And so they still did my surgery, I have 13 eggs that are frozen.”
The couple has other options they are exploring, the last as early as May. “It’s a lot for us to work through, but we’re getting there.”
And for the unconventional couple that met through music, and manages to keep their love affair alive through common activity despite the challenges and the caregiving, no doubt they will see this “project” through to a happy ending.