In spring of 2014, Keith, now 26 and living in Idaho, saw his mom start to “exhibit strange behaviors.” A staunch Christian, his mother had forgotten about Easter, which would’ve been unheard of in years past. The family soon found out why: their 52-year-old mother of seven had Huntington’s disease, a rare genetic disorder that Keith describes as like “Alzheimer’s, ALS and Parkinson’s all rolled up into one ugly, life-altering affliction.”
Though his mother knew the disease ran in the family, Keith tells me his mother’s “strong faith and religious self-assurance” lead her to be certain she’d never get it. Scientifically speaking, the odds of getting the disease are 50/50. “It’s passed genetically, it’s neurodegenerative — can become active at nearly any age,” Keith says.
“The parts of your brain that control your fine motor functions slowly deteriorate, affecting your ability to talk, walk, swallow food, control your limbs, etc.,” he describes. “Mentally, it’s like being trapped in a malfunctioning robotic suit of armor. Your brain wants to say or do something, but your body just won’t — which makes depression common, as well as many other mental issues you could imagine would accompany being trapped in a body you can’t control.”
He notes that the disease itself doesn’t kill, “but in its debilitating nature, death from pneumonia or some other respiratory ailment, injuries from falling or suicide is common. There is no cure and no way to stop the onset of symptoms.”
Keith decided not to rest on faith — he knew he couldn’t pass the disease down to his children. So, at 24, he got a vasectomy.
Andrew, a 25-year-old living in Ecuador, got a vasectomy at 21. There’s no rare genetic disorder running in his family, just an extremely common one: alcoholism and depression. He decided he didn’t want his sons “to grow up in this world.”
“Because of my alcoholism, I didn’t finish high school at 21,” he tells MEL. “I’m 25 now, out of work, with no money. There’s 60% unemployment in my country. Because of this, I’m depressed and a bit lazy — I’m not going work 10 hours a day for 400 bucks a month, and I don’t like this reality for my sons.”
At a time when scientists are breaking into new moral and ethical grey areas by allegedly altering the genetic line of future humans, guys like Andrew and Keith are altering their own genetic line — by ending it.
The Background
Keith hasn’t been tested for Huntington’s disease, and he doesn’t plan to. “HD found its way into our family through adoption,” he says.
“My grandmother was adopted by a family in the early to mid-1930s with no health history or indication of possible genetic issues. She went on to raise eight children before succumbing to complications from the disease at age of 53. Until that spring of 2014, it was thought that only three of her eight children had been ‘gifted’ HD, all of which had passed away by this point and at younger ages than her current age, all of which have children of their own who have also inherited the disease. My mother became the fourth at age 52, proving how seriously you should take 50/50 chances.”
Keith has six siblings, “all living our own lives and at risk for a disease that we have seen in real time take other family members and will, eventually, see take our mother,” but none of them know whether or not they carry the disease. They need a special blood test, but they’re afraid of survivor’s guilt. “It can be an extremely complicated labyrinth of emotions that will leave you with unintended side effects. I didn’t need to know whether I would die or not.”
Andrew, on the other hand, isn’t so torn. He has a sister with Down syndrome, and his alcoholism and depression are reason enough to end his genetic line. “No future is no future,” he says. “It’s very hard for us, not only economically.”
The Decision
In deciding to live in darkness as to whether he has the disease or not, Keith says one thing did become clear: He wasn’t going to risk passing this on. “From then on out, I made the radical changes and decisions I felt that I needed to make to find happiness in my life in order to live with that singular possibility hovering over me like a fucked-up dark cloud.”
One radical change, he says, was the decision to end his genetic line with him. “[It was an] important decision I had to make, but it couldn’t have been an easier one for me — two of my sisters have children who, depending on their parents’ status, could all be at risk as well. This was not an outcome for my life that I was willing to allow to come to fruition.”
He adds, “Generally, I believe the Earth is heading too quickly toward, if not already arrived at, dangerous overpopulation. If I later decide that I want to get tested and have a child, I will happily and responsibly plan on adopting one of the 150-plus million orphans worldwide who got dealt a shitty hand in life, and give them a second chance instead.”
Keith had toyed with the idea of getting a vasectomy as early as high school, and he tended to bring it up with every romantic partner he had. “I would bring it up to partners without the “potentially genetically broken” context and it would be taken with anything from over-the-top excitement to relationship-compatibility concerns,” he says.
“Either way, when everything panned out the way it did, it had to be a decision I made for myself. When I finally decided to research it, everything I read just spoke to me. For the cost of $700 and around an hour of my time, I would never have to worry about one of the scarier aspects of this disease: passing it on. My uncle was stationed in the Philippines during the Vietnam War and, with 99.99 percent certainty, assisted some probably very nice young lady in creating a child. That kid is at risk. He could have zero clue, and all of a sudden, the cycle is repeated, starting over from essentially the same point that it began in my family. This scenario truly terrifies me.”
So Keith “hopped onto r/vasectomy” and read through guys’ experiences. “I immediately found that my young age (24), marital status (single), number of children (0) and reasoning (genetic) set me apart from most everybody there,” he tells MEL. “It made me very skeptical that I would be eligible for the procedure. I had to contact many programs in different states multiple times to be assured that I wouldn’t get laughed out of the office. I finally landed with Planned Parenthood.”
The Snip
Despite the idea of a vasectomy percolating in the back of Keith’s mind for nearly 10 years, he still wanted to make sure he was 100 percent certain. “I called [Planned Parenthood] in April and set my appointment for October to ensure that any thoughts and feelings I had could be addressed, that I could save the necessary money it cost for somebody without insurance, and that, ultimately, I could change my mind if I needed,” he says. “October rolls around and I’m as sure as I’ve ever been about anything.”
Despite his certainty, Keith still expected pushback from his doctors, as described on by other childless men his age on Reddit. “I was under the assumption that I would be grilled and talked down to during my consultation,” he says. “When I arrived to my appointment, they approached me very openly and warmly, expressing real interest in the reasonings behind my decisions. Once I mentioned my at-risk status for a fairly uncommon disease, they fully understood and soon began the prep work for my operation.”
While Andrew doesn’t live in the United States, he expected the same pushback as Keith, and was also surprised when he didn’t get it. “Again, I’m 25, which isn’t too young,” he says. “I told them about my depression and alcoholism, but I think they just wanted my money … the counselor didn’t even ask me nothing when I called, he just explained what the procedure was and that it $520.
“After my procedure the doctor asked me what I was doing with my life, and I told him that I’m an IT student with no job at 25, and he stopped asking,” Andrew laughs. “Surely he thought that my future is not bright, and said that I’m a prepared adult who knows what I want and what I do.”
The Aftermath
Andrew says he hasn’t told his family about getting the vasectomy yet, but they know he “doesn’t like or want children.” And at 25, he says conversations about him having children have faded.
And though he’s experiencing some physical negatives from the vasectomy — “my right testicle hurts when I exercise, and my orgasms are about 15 percent less intense” — for the first time in a while, he remains optimistic for the future. “I think it’s going to get better,” he says. “Not just socially, you know, but in being able to buy things with the small amount of money I’ll save from not having kids, and trying to survive with no preoccupations.”
In the two years since his vasectomy, Keith is also optimistic, and cheerfully says he’s “never had a single regret with the decision.”
“It’s not always easy, and I will never escape the collateral effects of this awful disease, but knowing it won’t move past me brings me this indescribable peace. It has enabled and empowered me to live better and to find and pursue the things in life that make me truly happy.”
Quinn Myers
Quinn Myers is a staff writer at MEL. He reports on internet culture, technology, health, masculinity and the communities that flourish within.
