Walking Tall In The Shadows: Jason's Story
Walking Tall In The Shadows: Jason's Story
By Nonjabulo Mlangeni
In the latest blog on our website, Jason LaBarre provides a unique take on navigating XXY in a time when we knew far less about the condition than we do today. Read on to learn about his journey to Klinefelter's diagnosis, how he found meaning through serving others, and why he thinks people with XXY have a secret superpower.
Lessons in Resilience
Born in the early 70s, Jason LaBarre grew up in an era that had very little tolerance for difference. Yet he knew early on that he wasn't like everyone else. In social and academic spaces, he struggled to understand others and to be understood. He had to work hard to follow the seemingly endless list of unwritten rules that drive everyday conversation.
From social cues and sarcasm to inside jokes and hidden meanings, every social interaction carried the risk of missing the mark.
"When I talked to people, I'd have to think things through to make sure I gave the right answer, or an answer that they'd understand, almost like being a politician ... I always had to think: what did they just say to me? How should I react? What's their facial expression? What's their speech pattern? ... But by the time I'd answer them, they'd [already] be on a different question."
In classrooms, he faced a different kind of tension. Many teachers weren't well-informed about attention disorders, while others just couldn't understand that some kids learn differently. He remembers being more gifted than many of his peers---highly observant and a close listener---yet he was seen as stupid, lazy and even unteachable.
In truth, he says, they "didn't know how" to teach him because they didn't understand how his mind worked. So, while classmates focused on reading and times tables, he had the added mental and emotional labor of trying to conform to a shape that just didn't fit.
But this period of his life was not without rewards. When asked what these experiences taught him, Jason says "patience". But even beyond that, they taught him empathy. Knowing what it's like to be misjudged and mislabeled, he is wary of writing people off too quickly and far more willing to give someone a second chance.
Making Your Own Way
Like many kids that aren't neurotypical, Jason did better in more accommodating learning environments. Things took a positive turn once he transferred to a school that provided more intentional support. With the help of a teacher's aide, one-on-one attention, and more time on tests, he managed to progress.
After high school, he pursued a nursing qualification while taking breaks to work and save up tuition money. In short, he was living the active and independent life that many people with Klinefelter Syndrome are made to think they can't have. Such generalizations tend to discourage people and make them dream smaller.
In truth, Klinefelter's is on a spectrum, and many people with it are able to create the life they want. Some of the biggest challenges in Jason's life had little to do with Klinefelter's, and more to do with living in a restrictive time. Although he dreamed of becoming a registered nurse and caring for children with cancer, he frequently faced discrimination in the nursing field.
Today, statistics show that most American nurses are still women. And while the same was true in the 80s, society had much more rigid ideas about which jobs men were "fit" to do. Gender bias eventually took a toll on Jason and derailed his plans.
But as he'd learned to do in childhood, he chose to pivot and adapt, instead of waiting for the world to change. After working as a certified nurse's aide, he explored many career paths: from truck driving to working with animals on farms (which he liked best).
Diagnosed with XXY at 29
Many people with Klinefelter's are diagnosed later in life. For Jason, the path to diagnosis started with gynecomastia: a condition where boys and men experience enlarged breast tissue. For him, the condition came with pain, which made him go for a checkup.
"I thought I might have breast cancer, because I know men can get it ... but my doctor suggested a karyotype test (chromosome analysis)."
When the results came back, Jason's doctor referred him to different specialists that could help him process the news.
But like many people do post-diagnosis, Jason chose to google the condition while he waited. He was flooded by information that caused panic and fear. Eventually, he spoke to an endocrinologist, which brought much-needed clarity, and even a kind of relief. As the diagnosis was explained, he saw many of his past experiences in a new light.
"In my mind, I almost had a flashback [of] everything that happened in my life. It was like, 'that's why this happened, that's why that happened!"
Jason quickly understood that many of the social challenges and physical symptoms he'd dealt with were due to Klinefelter's. From the migraines he experienced as a young child to fatigue and learning difficulties at school, to finding it impossible to gain muscle in his teens.
Then came the hard part. He was told he could never have biological children, no matter how much testosterone he took. Today, men who deal with infertility have options beyond adoption. But, in Jason's young adulthood, sperm retrieval techniques were not what they are today.
The news was crushing. But in learning the truth, he also learned what he could do about it. A doctor referred him to an XXY support group and prescribed testosterone therapy. The former opened the door to community and purpose. The latter deepened his voice, improved his focus, and helped him live a more active life.
Lessons in Love
Eventually, Jason began a long-term relationship with a woman who also had fertility challenges. As the years passed, the prospect of having no children began to hurt less. Long-term commitment taught Jason many things, deepening his understanding of how XXY can play out in romantic relationships.
Since Klinefelter's can make it hard to master certain social skills, some people take longer to assess things like motives, intentions and character. This can make them more vulnerable to manipulation, control and abusive relationships. Jason's experience with love and heartbreak taught him not to let others abuse his kindness, and to never give chances that aren't deserved.
Walking Tall
Despite various highs and lows, Jason forged a meaningful life by finding joy in small things. Learning all there is to know about civil war history. Spending time with animals. Being of service to others. Never one to shy away from his diagnosis, he threw himself into XXY advocacy and education.
He's partnered with many Klinefelter's support groups over the years, and he's particularly skilled at helping people whose children have XXY. These families sometimes face communication barriers because the parents don't know exactly what the child is going through. At the same time, kids may struggle to explain their experience in terms that parents understand.
"I'll ask [parents] 'has he stated that he feels like a robot or an alien?' And they're like 'yes, I thought he was playing a game' ... I say 'no, he's actually telling you that he's starting to feel the effects of Klinefelter's. His body is trying to develop and [the condition is] holding him back ... it's almost like a computer with crossed wires ... That's kind of what it [feels] like."
To advocate for people so well, you have to be someone who truly sees people. For men like Jason, this is a hard-earned skill. One built up through years spent on the sidelines of school playgrounds and the outskirts of the in-crowd at work. Many people with Klinefelter's have spent years studying human behavior. In the process, they develop depth, grit and resilience. A skillset and a superpower.
"I always say that we're like Batman," Jason explains. "We stand in the shadows and observe everything going on. But when Commissioner Gordon's done with his investigation, I walk in and say, 'this is what I observed,' and they're like 'oh my goodness'---and I'm like 'yeah ... exactly!"