Serena McCarroll first began to experience chronic pain during her training at the Royal Winnipeg Ballet School. She would later develop additional challenges with proprioception, the body’s ability to continually sense and integrate its movement and position.
Medical practitioners have been unable to identify the specific reasons for these issues. In a video entitled ‘Invisible Problems’, Serena, now a visual artist, describes living with a hidden disability and the negative, dismissive reaction it often receives from others. (Click here to view the video; I’ve also included it below.)
Proprioception is something I’ve struggled with from an early age, in the form of odd, “drifting” sensations relating to limbs and posture. In my case, it’s not entirely clear if the issue is related to the autism spectrum, though anecdotally, many autistics report similar experiences
After reading posts here on the topic, Serena contacted me and has kindly granted permission to share the following conversation.
Serena: I found your blog while looking up stuff on proprioception. It’s so hard to find writing on the subject that I can relate to. Thanks for writing about it.
M: Thanks. I always worry that the proprioception stuff makes no sense to people, so I appreciate that. Wow, I just watched your video ‘Invisible Problems’, it’s great.
S: That lecture was terrifying.
M: Your descriptions really hit home for me because the themes are ones that you also find in a lot of autism discussions. So many autistic experiences are “invisible”, so to speak…like sensory issues and social pragmatics; maybe you see outcomes, sometimes, but not the underlying experiences that are happening. Anyway, your discussion of fibromyalgia and proprioception, it’s very moving.
S: Thank you so much. I liked your post about touching walls as a child. I think holding onto something unmovable, pushing or pulling against it, those things are definitely related to proprioception. Interesting that the most accurate descriptions I’ve found of proprioception disorders have been in relation to autism (a recent discovery).
M: After watching your video, I was curious: you were diagnosed with fibromyalgia at one point…did that help make sense of the odd sensations? It never occurred to me that fibromyalgia could also lead to difficulties with proprioception, but I’m not very educated about it.
S: I don’t even think I necessarily have fibromyalgia. I have unexplained chronic pain and it’s the only category I fit into.
M: When you discuss these various issues with health professionals or just people in general do you continue to run into skepticism, or does it get better as you improve the ability to articulate what’s going on?
S: It hasn’t improved. The more descriptive and detailed I am about how I feel, the more “out there” I sound to others. It’s tiresome.
M: It’s a difficulty that pops up a lot in autism discussions…particularly with female autistics. There’s a stereotype that autism primarily affects males…and I think the truth is that it’s just as common with women. But when women describe autistic traits to family members or mental health professionals, they’re frequenty dismissed…or misdiagnosed. Their experiences are less likely to be taken seriously.
S: Now when I’m talking with a doctor, I only tell them I have insomnia. It’s something concrete, something they’re familiar with.
M: It’s frustrating, because as I read autism blogs and personal stories, it’s one of the most common difficulties…finding that people don’t believe you because certain challenges may not be visible. I keep thinking about your video because, you’re dealing with a different set of issues, yet the reaction from people is strikingly familiar. I mean, growing up, when I described sensory pain or spatial confusion or odd sensations, I was always pressured to hide things, stop talking about them. Even when I finally received a spectrum diagnosis, my parents were completely averse to hearing about it. They refuse to discuss it. And I think the visibility factor is a big part of the issue…people want you to be a certain way, and if they don’t see your challenges, they can just mentally edit them out of the way they perceive you.
S: I appreciate you talking about these things with me. The ‘Invisible Problems’ lecture was terrifying because I’m used to people thinking I’m delusional, but a friend really encouraged me to do it. So it’s good to hear from someone who can relate. I was so excited when I read ‘Pride and a Daily Marathon’. It’s so hard to find anything that deals with this stuff at all. As you know.
M: I know you’ve spoken with a long line of doctors and health practitioners in an effort to deal with the pain and find out what’s going on. Even if they’re not finding a specific cause, are you receiving any sort of helpful feedback? Or is it consistently off the mark?
S: The first person who helped me with all this explained everything perfectly but then he disappeared and it feels like everyone since has been grasping at straws. However, the guy who was helpful didn’t understand how strong the body’s memory is or how hard it is to re-pattern movement.
M: Up until I met with an autism specialist, I was routinely given a lot of useless advice. And it always hurt because, based on the responses, I could tell that people weren’t really hearing anything I was saying. To this day, I’m still kind of stunned by the first psychologist I spoke with in 2005. He claimed to have all of the answers…but he was awful. Just really bad. He wanted to rush to a conclusion very quickly…and his conclusion made no sense.
S: I find it strange that more doctors aren’t curious. They’re so quick to shut things down rather than look into something unfamiliar. I think the guy who helped me the most before disappearing was suffering from an ego problem. He was overconfident.
M: Yes. I think ego stuff is exactly what was going on with the first psychologist. He felt certain that he could rapidly conjure up a solution…but all of his work was based on Jungian theory. I went in describing life-long challenges with sensory aversions and social pragmatics. I didn’t even mention the proprioception stuff, because I didn’t trust him. But he waved off everything I was saying and…I think it was during the fifth session…he stated, “Your anima is overdeveloped! That’s what is going on here!”
M: I asked him what that meant, specifically. And he said, “Your feminine side is dominating your personality and making you too introverted.” I was like, “Is this happening? Is this a practical joke?” Anyway. We don’t need these people. Louie C.K. gets us. That’s all that matters.
S: Ha! The guy I saw who was initially helpful worked like an osteopath. He was super gifted in that he could see very quickly what was wrong and knew how to fix it structurally. But he didn’t take into account the fact that the mind needs time to adjust to physical changes. He thought he could put everything in its place and walk away.
M: What I find to be most frustrating…particularly with proprioception issues…is that it’s so hard to get people to even acknowledge that they exist. In a way, I get it…they don’t make a lot of sense, in terms of the way they subjectively feel. And there’s not an established, non-technical vocabulary for them. So to describe things, I’m always discussing “floating”, “drifting”, and so on. It’s just so hard to convey these things to people and find concrete descriptions that others can really get. There is definitely progress in the autism community, in terms of people forming groups and identities and sharing experiences. But I don’t think it quite manages to provide an outlet for the sharing and understanding of more nuanced experiences like proprioceptive discomfort.
S: I haven’t really found anything that connects both proprioceptive disorders and chronic pain. I don’t relate to any larger community. Have you watched ‘The Man Who Lost His Body’? I read ‘Pride and a Daily Marathon’ years ago but only watched the documentary recently. There aren’t enough doctors out there like Jonathan Cole.
M: I have not seen that, I will have to check it out. The only film I really feel any attachment to, in terms of connecting with it personally, is Jacques Tati’s ‘Playtime’. It’s the only film where I watch and think, This is what the world looks like to me. It has nothing to do with the autism spectrum; there are plenty of films with autistic characters and I’ve disliked all of them. But with ‘Playtime’, the visual/sensory experience and the way social spaces are arranged and filmed…it always startles me to watch the scenes unfold. I get that kindred-spirit feeling every time I see it.
S: I think I’ve only watched Tati’s Mon Oncle and that was many years ago.
M: So, I wanted to ask a few questions…if this is too personal, please tell me and we can discuss something else. In the ‘Invisible Problems’ video, you describe first experiencing chronic pain while at a dance academy. I was wondering how that happened…was this something that played out slowly, or was there an injury? I guess I wasn’t sure how long you were able to continue with dance after the issues began.
S: I got serious about ballet when I was 13 years old, that’s when I moved from Lethbridge, Alberta to Winnipeg, Manitoba to attend the Royal Winnipeg Ballet School. The injuries started when I was 14. The proprioceptive issues didn’t start until much later when I was 20. At the time, I was living in Montreal and taking private classes from Natasha Izbinsky.
At 20 I should have been working, not still training, but injuries had impeded me. I learned about Natasha from watching the NFB documentary ‘The Making of a Dancer‘. I auditioned to be her student and she accepted me saying she would turn me into a “perfect ballerina.” I swear that’s exactly what she said. Natasha was from Russia and had attended the Vaganova Academy (often referred to as the Kirov). She told me I had been doing everything wrong and that I needed to re-learn basic ballet technique. She was a great teacher. I remember her explaining the most fundamental of movements, a plié, in a way that was completely new. Suddenly my body was able to make connections it never had before. Three months into that training I cracked my neck during class. I had been rolling my head from side to side during a break between exercises in an attempt to relieve stiffness. Immediately I knew something was very wrong. That crack finished me as dancer. I would never be able to go back.
The proprioceptive problems surfaced instantly. At first it just felt like dizziness but then it felt as though everything inside my body had surreptitiously been filled with helium: each bone, each muscle, each organ. My sense of gravity was gone. Nothing felt connected anymore. I was overcome by the uncanny sensation of different body parts trying to drift off in different directions. My arm felt like it wanted to rip from my body and float up into the air. My feet wanted to wander off in unknown directions and I had to look at them in order to mentally direct them forward. My neck felt like it was about to break right off.
Initially I went and saw my regular chiropractor. He was baffled. I traveled to Arizona to see a practitioner who had helped with a previous injury. He realigned my neck, one shoulder, and one hip. He told me not to go back to Montreal because the work he’d done was the equivalent to major surgery and instructed me to stay in a warm climate. I lived with my grandmother in California for a month, maybe two. I could tell during that time that things weren’t holding. When I finally tried a ballet class it was obvious that my body wasn’t stable. The work that had been done was reversing.
M: How did you transition from dance to your current work as a visual artist? Is there any sort of connection, in terms of how you view or feel the world, where visual art became a natural extension of dance, or was it a completely different process?
S: I always feel like a failed dancer pretending to be a visual artist (and doing a bad job at it).
M: I’m sorry it feels that way.
S: I’m not sure how to talk about transitioning out of dance because for me it wasn’t an intentional transition. I was convinced for many years that I would dance again and that I had only to bide my time until my body was fixed. I had never considered doing anything other than becoming a dancer.
As a kid, I loved the structure and rigidness of ballet. I loved the fact that it provided me a means of expression without talking. In ballet, you don’t stop to explain yourself, you just do what you’re told to do. Visual art was something I was never interested in. Both my parents painted and they would drag me and my brother to art openings when we were young. I didn’t like that environment at all.
When I needed to come up with something to do other than dance, I couldn’t think of anything. My dad, a retired professor, strongly encouraged me to go to university and pursue photography. I took his advice and began a repetitive cycle of going to school, getting frustrated, leaving school, getting a job, getting frustrated, going back to school… I specifically chose schools that were located in large cities (Vancouver, Toronto) so that I’d have a better chance of finding someone who would be able to fix me. This process resulted in me getting a BFA and a MFA.
I started seeing a counselor during the second year of my master’s degree and she was the first person to suggest that I was living with a permanent disability. I had never thought of myself that way.
So I guess I’m the the type of person who perfectly fits that cliche about life happening while you’re busy making other plans. I spend my time doing projects that I find interesting and/or amusing. I use them as a distraction
This is too many words. I’m not sure if I’m properly answering your question. It all seems like nonsense.
M: It makes perfect sense. You describe all of this- including some really difficult moments- extremely well.
S: Thanks for being so nice.
M: No, thank you Serena. Thanks for the discussion.