By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
Kylie Reid says she sometimes feels like a misfit. Her body betrays her, and her mind is always on overdrive.
The 18-year-old suffered trauma as a preschooler when her world turned upside down. Her father was paralyzed in an accident and required months of treatment and rehab. The family’s home was remodeled to accommodate his needs, she had to live with another family for a time, and eventually her parents divorced.
She has been diagnosed with fibromyalgia, a chronic disorder that causes fatigue, pain and tenderness throughout the body. She also suffers from anxiety, depression and sensory processing differences.
The senior at Franklin Central High School was referred to the pain clinic at Riley Children’s Health last year, followed by an introduction to occupational therapy with Riley OT Mary Hart MacLeod at Riley’s East Washington Street pediatric office.
It has been seven months since she began seeing MacLeod, and the difference is remarkable, she said.
“We work a lot on the sensory sides of everything and accommodations and figuring out what actually works with my body,” the teen said.
Her parents, R.D. Reid and Jill Howell, sit in on her sessions in a small room where the overhead lights have been dimmed.
Kylie is holding onto a purple ribbon that goes with her everywhere while also hugging a bouncy peanut-shaped ball that she finds comfortable, relieving some of her body aches. The pain started years ago in her legs and feet, then slowly creeped up through her hips and into her elbows and back.
“The biggest thing was it also affected my quality of sleep,” she said. “I've still, to this day, never woken up and felt refreshed from sleep, just because my body is on alert all the time. In OT, we try to get me to be able to relax more. It’s a lot of mind-body work.”
Kylie explains that she’s always been hyper-aware of things, noises and people around her, which led to what she describes as feelings being “stuck” in her body.
“I can highly intellectualize my feelings,” she says. “I know exactly what I’m feeling, why I’m feeling it, when I’m feeling it, but I couldn’t actually ‘feel’ it. So, the feelings would get stuck.”
Therapy is helping her understand what’s going on in her brain and body.
“At first, everything was really disorganized,” MacLeod said. “We had to weed through it and organize it to help her nervous system organize it more. These are the things that are happening in your nervous system, so what are the things we can do to support it?”
They tried spoon theory, basically a metaphor for the amount of physical and/or mental energy a person has available for daily activities and tasks and how it can be limited.
For example, on a low-pain day, someone might need one spoon to scramble eggs for breakfast. On a high-pain day, that same task might use up to three or four spoons. The inconsistency can make it hard to prioritize tasks.
Kylie also uses an app on her phone that helps her track her habits and mood throughout the day, in addition to recording her sleep and events of the day. She is also encouraged to identify three good things each day. Doing so can help increase feelings of joy, contentment and satisfaction, MacLeod said.
On most Thursdays, one of those “good things” is “matching socks with Mary,” Kylie said.
MacLeod and her patient have five pairs of matching socks, and each week they try to match the socks they wear on therapy day simply by guessing. Sometimes Kylie wears two different socks just to hedge her bets.
“Usually when I do that, I get one of them right.”
Today, they don’t match, but they always remember to wear one of those five pairs.
STEALING HER JOY
Before she began meeting with MacLeod, Kylie said she felt “wrong” a lot. “I was just really angry at my body. I’m like, why are you having pain? I just want to walk around my house.”
That nagging pain stole joy from her life, she said.
“We went to a lot of different doctors trying to find out what was wrong,” Kylie’s mom said. “And everyone was like, she’s fine.”
But as those layers of trauma grew, so did her pain.
“It’s restricted more and more just my ability to have joy,” Kylie said. “I think a lot of the pain stems from just being tense a lot.”
MacLeod explains that she and Kylie did a lot of work in their early sessions to find out the best environment and space for the teen to feel safe and comfortable in.
First, she prefers rooms that aren’t super bright. And because she has what she describes as “hyper mobile joints,” she likes the support that the peanut ball gives her.
“I felt safer when I was compressing things, like compressing my hands or my knees or my feet. And slowly I was able to feel safer,” Kylie said.
“I think when she started, she really felt very unsafe within herself and the world at large,” her mom said. “She felt like she didn't fit in. She felt like a misfit. This has helped her to feel less weird.”
MacLeod has done a good job of including the parents in the process, Howell added.
“That has been really beneficial for us. We’ve been a part of traditional counseling appointments with Kylie in the past. This is different though because we are watching and Mary is modeling how to respond to Kylie’s sensory overload, which has helped teach us how to respond.”
Kylie said being able to process things in front of her parents improved their ability to understand what she was thinking and feeling.
“I just thought I was oversensitive and overreacted to things,” Kylie said. “I’ve had sensory issues since I was little, but they’ve definitely amped up.”
She accommodated those feelings, though, figuring she was just supposed to feel that way.
“I have never learned so much about what I was feeling,” she said, describing how the simple act of being touched or brushed up against in a hallway could trigger anger and/or pain.
“It was so overwhelming. There was so much going on all the time – in my head, in my body, around me. My body has never been in a relaxed state, and since I started coming here, I've been more relaxed than I've ever been in my life.”
That’s saying a lot, considering that she was skeptical from the beginning because she had already seen multiple therapists.
“This has made the most impact,” her mom said.
Through therapy, Kylie said, she has learned more about respecting her body and what it is telling her.
She looks forward to her weekly appointments, not just for the comfort she finds in them, but for the tips she learns to apply in stressful situations throughout the week.
“Knowing that I can connect and feel safe here will help me in the future.”
OT IS ROOTED IN MENTAL HEALTH
This might not look like a traditional occupational therapy session, and that’s one of the reasons that MacLeod thought Kylie might be a good person to share her experience.
“Her journey with OT probably looks different than a more medical-model journey that is often seen with OT. It's actually closer to where the origins of occupational therapy come from,” the therapist explained. “OT is rooted in mental health.”
While the concept of occupational therapy dates back to the late 1800s, it grew around the time of the first World War, MacLeod said.
That’s when doctors started seeing veterans coming back with trauma and physical limitations suffered in the war.
“So really, what Kylie and I do together is far closer to a really pure form of OT, as opposed to a lot of what you normally hear about in the medical model,” MacLeod said. “As a profession, we kind of got absorbed by physical therapy and speech therapy and respiratory therapy. And really, what we do, and the lens that we look through, is much, much different, and has diverse applications in a lot of different areas.”
Kylie jumps in to put her own spin on the therapy.
“Honestly, like with everybody, it's kind of just figuring out their senses and how their senses work best for them. And not even just people with sensory needs, but kids in general.”
Everybody's nervous system works differently because of how they're wired, MacLeod explained, but also due to how their experiences have shaped their life.
“And so, we take that and look at it through different lenses to figure out how we can use occupation to help you feel restored and safe. But then also, what adaptations can we do to help you be able to engage in your chosen occupations?”
ADAPTING TO COLLEGE LIFE
As she nears graduation, Kylie is set to begin college at IUPUI, living in a single dorm room. She is working with MacLeod to identify obstacles in her new living situation, like lighting, ventilation and social situations, and to come up with strategies to address them.
Since meeting MacLeod, Kylie said, being present in the moment has become easier, and learning to see things through other people’s perspectives is helpful, though she admits to needing more work in that area.
“I used to be a lot more irritable and on edge. I was always in different stages of fight, flight, freeze. I was just rotating through them with different situations. There was not a learned state of rest.”
Occupational therapy works in several different domains, MacLeod explained, including a processing domain, which is how you move through planning, sequencing and organizing thoughts.
There’s also a motor domain – how you move your body; a sensory domain; and a social domain.
Kylie’s therapy has touched on all of these areas.
“When you live in a traumatic state, you see a lot of things in black and white,” the teen said. “There’s not really room for anything other than … this is good or it’s bad.
“I’m still not the best at seeing it as not just good or bad. … But seeing other people’s perspective and trying not to live inside my own head has helped transform a lot of my relationships.”
Learning to “embrace the calm” has been huge, she said.
Asked what brings her joy today, she answered: cats, horses and her boyfriend, not necessarily in that order.
“My boyfriend brings out a lot of my inner child. He’s really fun to play games with or blow bubbles with. I feel really safe around him. Being around ‘my people’ is better for me.”
In this case, occupational therapy is all about finding that joy, MacLeod said.
“It’s about learning how to harness the power of connection and interaction to support someone. And It’s about how you can authentically and joyfully find what you like on a daily basis and actually do it.”
Photos by Mike Dickbernd, IU Health visual journalist, email@example.com