The Voice of Porter Declan
By Kimberly Walker, with Chelsea Castonguay
As the old saying goes, “There is nothing people like better than a comeback.” Porter Declan (name and identifying details changed for privacy), a 29-year-old man living in Austin, Texas with Klinefelter syndrome (47, XXY) is the embodiment of this phrase. Porter has survived the toughest times in life, and is determined to show the world all he has to offer.
Childhood
Born in Texas City, Texas, the youngest of two boys, Porter was diagnosed with a learning disability by kindergarten. Initially, despite the early setback, school wasn’t too bad. Though he didn’t make friends easily, and experienced some bullying, he’d grown up in the small town and was still an insider. He got by in his classes. Other than being kind of a “big ol’ boy”, his childhood was unremarkable. That all changed in the eighth grade.
Porter’s father worked as a computer programmer full time to support the family, while pursuing his dreams of acting in his free time. As he gained popularity he made a decision, he would move to Austin or the “Hollywood of Texas” and try for a career in the business. Within a year the family had moved to Austin, and bought a house allowing his father to begin working towards his dreams.
Porter was in a tailspin; Austin was huge and everything familiar was gone. He was deeply unhappy, and started acting out. His rage became uncontrollable. Though seeing counselors, he was still having difficulties with the changes. Around this time, Porter started having rapid growth spurts. Always tall, he shot up, causing searing pain and even broken bones. His pediatrician didn’t know what was wrong.
By the age of 14, he reached six feet tall. Teachers at his new school were excited. The prospect of an adult-sized freshman on their sports teams had them dreaming of district championship pennants. Though he wasn’t really interested in the competitive atmosphere, he reluctantly agreed to try out for the team. Meanwhile, he was still growing at an alarming rate. Just before basketball tryouts, he was walking into school and tripped, falling into a locker and breaking his shoulder, thus ending any hopes of a career in high school sports.
Though those closest to him recognized he had a real physical problem. The fall was not severe enough that it should have caused broken bones, but others outside his circle didn’t know. This caused the bullying, which had been mild up until that point, to become intense. The school was competitive, and athletes were highly regarded. The idea that this new kid was blessed with this height, and “conveniently” broke his shoulder after being reluctant to play, was suspicious to many. Not just students, but teachers also let him know they were unhappy with him, making the daily grind almost emotionally unbearable.
Diagnosis
Porter’s parents, however, recognized the problem was bigger than their son not wanting to be part of a team. After breaking his shoulder, he was still growing at a rapid rate; adding six inches in one year alone. His parents took him from doctor to doctor. Initially, most doctors thought the diagnosis would be Gigantism. He was finally sent to an endocrine specialist, where they ran a battery of blood work, including a karyotype test.
Porter was diagnosed with 47, XXY, or Klinefelter syndrome, which was the cause of the rapid growth spurts and pain. The family was slightly relieved that the diagnosis was not Gigantism, but had a new condition they were unfamiliar with to learn about. The doctor started him on a course of steroids, and showed his father how to administer them. Porter hated the shots, and though they tried, he quit after a few months. In typical teen fashion, he put his diagnosis out of his mind and moved on. He had this syndrome, but what exactly it meant, as well as how it affected his life and mental state wouldn’t become apparent until much later.
Teen Years:
Being a teenager is enough to make anyone uncomfortable in their own skin, the teen years are difficult for most students. Porter was no different. His goal was to hide in plain sight and get through the remainder of the school year. His height made him a target. He felt like an outsider. He had one friend, and spent most of his time alone for the next four years.
The bullying and anxiety got to him. He was lonely, angry and lashing out against anyone who crossed him. Porter was in a lot of physical fights during those years. Due to his size, he felt treated like the aggressor by everyone, even adults and authority figures, though he was still a child. School work itself wasn’t much of a problem. He did okay when it came to grades, doing well in some subjects, and graduated with his class.
Early Adulthood:
After high school, Porter went to work in a variety of jobs from retail to foodservice. Though he’d finished school, he was adrift in life. His close friend from high school moved to a small town a few miles away, and Porter started spending a lot of time there. There was a restaurant with a lot of young people on staff nearby, and the two men would hang out there fairly often. One of the waiters was a familiar face from high school, and he and Porter struck up a friendship.
A lost path:
Porter was elated. His popular new friend introduced him to people. He finally had a group of friends. The crowd was a fast one; they liked to party and fight. Porter didn’t mind at the time. He was still working through his anger and had issues with authority that his new friends understood. His erratic behavior increased: he was smoking and drinking regularly. Not long after he started breaking the law. At first, it was a petty crime. He got a felony for theft. This resulted in a time where he was in and out of jail, the longest stint being five months.
The first few stays he got by on bravado and size. Porter was never there more than a few weeks, so he could easily keep up the facade of not caring about anything he showed to the world, and even himself most days. The last time, however, was different. He spent six months in jail. Though he had basically dismissed his syndrome, it lingered at the back of his mind. He was angrier and more unhappy than ever.
Falling into old habits:
He was released after serving his time. Things weren’t immediately better. He’d burnt bridges with family and friends, and had to earn trust back in many areas of his life. He acknowledges that it took years to rebuild his relationship with his family, but has matured enough to understand why and how “lucky he really is to have the family he does” and remains grateful for their support.
By this time things were going reasonably well for Porter. He was enjoying his life, and had fallen into a kind of routine living with his parents. He was even working a job he loved, when a major setback came in the form of a legal issue in which he was a witness. The idea of becoming entangled in the legal system felt unbearable and depressing. He stopped spending time with his old friends to avoid falling into bad habits, and hadn’t made any new ones. He was over seven feet tall, and his stature made him feel isolated.
Porter wasn’t even twenty-six years old, and found himself hopeless. His diagnosis was at the forefront of his mind. He felt depressed about having to testify at the trial, and wanted the pain to stop. Porter unsuccessfully attempted suicide. Feeling he had nothing to live for, he planned to try again.
A life-saving call:
The night before he was going to make his next attempt, he got a call. A friend of his whom he had confided some feelings of isolation and unhappiness due to Klinefelter syndrome had some news. She had found a website dedicated to 47, XXY. The friend said the website creator detailed many of the same struggles Porter experienced. This included the anger, isolation and hopelessness he was currently feeling. She encouraged him to check out the website.
As soon as he began reading, Porter immediately knew he’d found what was missing. There was a whole community like him, so he emailed the site owner. He was directed to websites and a Facebook page with thousands of men living with 47, XXY. He stayed up late into the night, reading and absorbing this new information. Porter threw himself into the community.
He chatted online and made friends with different members of the Facebook page. They talked about muscle mass and testosterone. He learned more about 47, XXY than he’d ever known. He attended conferences and outings, and has driven up to meet other men living with Klinefelter syndrome. After years of being an outcast, or part of the group for the wrong reasons, he had finally found people who understood and liked him for exactly who he was. These were people who were empathetic and understood the challenges and victories associated with Klinefelter syndrome. Not only that, many members shared his interests. The anger clenched in his chest loosened a little.
Living with XXY
Though things haven’t always been easy, Porter has persisted. These days he has a steady job he enjoys, and friends from all over the world. In his free time, Porter loves to indulge his passion for art. More than a hobby, art provides Porter with a small income stream. It also gives him an opportunity to connect with others, while being creative. Most importantly, it brings him a sense of peace and happiness.
Life has changed a lot from his initial diagnosis for Porter. These days the 29-year-old seems comfortable in his skin, and you’d never know he suffered so much in his youth. He has a shy smile, and a deep laugh that rings out often during the interview.
His feelings of hopelessness are mostly gone. He attended therapy to start working out his anger. Porter has begun looking into new methods of getting steroids, since he is without health insurance currently. He hopes to get some kind of solution soon. Still under thirty and learning to thrive with Klinefelter syndrome, Porter has a compelling story of hope and perseverance to share with the world.
If you’re feeling hopeless, need support, or considering ending your life, please know there’s help available. The National Suicide Prevention Life offers chat and phone services.
