The Art of Reinvention: James' Story

The Art of Reinvention: James' Story

By Nonjabulo Mlangeni

The latest blog on our website profiles James Goldsworthy's journey to build the life and family that he's always dreamed of. James walks us through his early struggles with XXY, his determination to push through setbacks and loss, and the changes he had to make in order to succeed. This is an inspiring story about resilience, transformation and creating the life that you want.

Keep Moving Forward

James Goldsworthy is not one to wallow in the past. When I ask about his early experience as a child with Klinefelter Syndrome, he tends to touch on it briefly, steering the conversation to here and now. It's not hard to understand why. Many people with XXY don't have idyllic, cookie-cutter childhoods. Their stories are often marked by grit and resilience---the natural outcomes of tackling adversity from an early age.

The younger James had many of the symptoms associated with Klinefelter: a slim body that struggled to gain muscle, unexplained fatigue, a very short attention span. It was the learning difficulties, however, that posed the greatest challenge. Despite his best efforts, he wasn't progressing at the speed of his peers.

"I struggled with words; I have really bad dyslexia ... [So] I studied as hard as I could, but I failed a lot. I wasn't very academic, and I didn't read much."

On the social front, he was shy and kept to himself. Like many kids that aren't neurotypical, he felt either targeted or excluded by classmates, which made him want to opt out of school altogether. He remembers pulling sick day after sick day, hoping to avoid the double-burden of academic pressure and social stress.

But that's about all he has to say about the old days. Much of it he doesn't want to dwell on, and much of it he simply doesn't recall. It becomes clear that James is future-focused: always thinking about the next season and all the potential it holds.

This becomes a running theme throughout our conversation: the need to become an active creator in your own life. Early on, James learned the importance of writing your own story in a world where others often try to do it for you. Instead of seeing the past as a place to get lost in, he seizes each opportunity to start afresh on his own terms.

Owning Your Story

When college came around, James made a personal commitment to show up differently in that space, trusting that this would create a better outcome.

"It was a major turning point for me ... I was able to reframe myself as someone new. I purposely made myself bolder [and] more approaching."

So, with college came community. He met many of his best friends during this time, and they remain close even decades later. Looking back, James sees that he was never the shy introvert he once thought himself to be. He just behaved that way in environments where he didn't feel safe to be his true self.

"I remember when my dad and I were flying to different countries ... I'd purposely want to be [seated] next to people I didn't know. I'd be that annoying person who'd say, 'Hi, I'm Jamie! How are you?' and sometimes we'd chat the whole way. I was always a person that was able to walk up to people. It's when I was in situations where I felt uncomfortable that I wasn't able to."

In other words, don't assume that you are always the problem. People with Klinefelter's can start to think less of themselves based on the feedback they receive in hostile environments. But if you never take a moment to question the narrative, you can lose sight of who you really are.

Breaking Through

James always had it in him to be assertive and to lead, but it was hard to let that shine in dark places. He had to branch out in order to break through. Today, he encourages people with XXY to build a healthy community.

"I'm a big advocate for helping people ... working with other people to get what you want and what you deserve. I know a lot of people with Klinefelter's spend a lot of time alone or are socially awkward, but I don't live my life like that anymore. It's good to bring people into your life, and not just family but [also] colleagues. If you have people around you, they help to build you."

And in the process, they can even help you build the life you want. Through guidance from his community, James was able to choose a career path. Though he started college as an engineering major, his father noticed his creative talent and encouraged James to try interior design.

Because he was navigating academic challenges and degree changes, it took him longer to graduate. But he pushed on and learned the value of persistence. Unfortunately, there were also lessons that came at a high price. James' mother didn't live to see him graduate, having passed away in the middle of his studies. This was another turning point in his life.

"It was hard as nails ... [but] from then on, I said 'I've got to live day by day. As something new, something fresh, something different. I choose to live life every day and be forward-thinking."

This perspective carried over to his career. To this day, he is willing to change his life at the drop of a dime because he trusts that the best is yet to come. He spent seven years travelling the world to design hotel interiors, before he started to feel uninspired. Instead of letting fear keep him bound, he chose to pivot into another creative lane.

Today, he encourages people with Klinefelter's to go boldly after the life they want.

"Put yourself out there ... It may be scary at the start; it may be a leap of faith ... [but] you might be surprised by what might happen ... every time things went wrong, I would always push and work out how to get better ... There's always gonna be something better and something more."

Building A Family

In 2015, James and his now-wife Genex met on a dating app. As a doctor, she shared his focus on career growth. She immediately recognized that James was a cut above the rest: caring, sincere and exceedingly kind.

"He was just so nice [that] I was like, 'this can't be real," she recalls. He was "a breath of fresh air," and beyond that, he was all-in.

Three months into dating, he asked to meet her parents; in 18 months, they were wed.

The years that followed were a dream. They bought a home, travelled the world, got a few pets.

"We put having children on the backburner for a bit," she says. "You never think you're going to have a problem [conceiving]. You make a plan and think life will go according to the plan."

But as Genex entered her late thirties, the couple spent three months trying for a baby without success. And though it's normal to try for several months, they wanted to make sure everything was okay because they knew their time was limited. They went through testing to rule out potential issues, and that's when James was diagnosed with Klinefelter Syndrome.

Many men discover they have XXY in their later years, while trying to have a baby. In the process, they're dealt the double-blow of learning they have a health condition and learning they might never have a biological child. When this news is delivered by medical professionals that lack empathy, the experience can be downright traumatizing.

James learned about his fertility challenges through a brash phone call that left him stunned.

"The way they broke the bad news was terrible," says Genex. "Someone from the [doctor's office] called him and said, 'you have no sperm, come back to retest in three months, thank you and goodbye."

In the aftermath, James' mental health declined.

"Your dream of having a child is taken away from you and you're thinking what? You're so confused."

He also felt overwhelmed by the volume of information out there about Klinefelter's, especially reports about potential health complications. The fear that something would go wrong eventually turned into health-related anxiety. Today the couple maintains that a little empathy from professionals can help people cope in healthy ways, while lack of care can lead people to spiral.

Through therapy, James got the chance to grieve the future he thought he would have. He also learned how to manage stress and pressure, which benefited his personal and professional relationships.

All Roads Lead to Baby

The couple began considering alternative methods to conceive. The microTESE procedure was presented as an option, but they had concerns about the longer wait. They also worried that the invasive surgery might not prove successful.

"I didn't want to go through all of that and then be told that there was no sperm," James says.

Instead, the couple started looking at donors and began egg retrieval. Ultimately, it was the in vitro fertilization (IVF) process that brought their family to completion. Today, they are the proud parents of a baby girl whose life has made this journey worthwhile. Every fear, every setback, every sleepless night. They'd do it all again just to end up here.

"All roads have led to Ellie; that's what we say. If we didn't find out about James' diagnosis, if we didn't get the donor, if I didn't go through IVF, we wouldn't have had Ellie. And now that we look at her, we can't imagine this journey any different."