by Morgan Blakley
There is often much confusion surrounding disorders of the corpus callosum (DCC), and in Dirk’s case: a specific diagnosis of agenesis of the corpus callosum (ACC). Historically, these disorders are often misdiagnosed for something else or simply overlooked altogether. They can appear as a “longtime lurker, first time poster” and only showcase signs in situations that involve attention to detail, learning new tasks, or engaging in new social situations.
But this is exactly why 39-year-old Dirk is enigmatic and somewhat of an anomaly in the DCC world, proving that there is an existing spectrum. No two people living with a DCC are exactly alike.
Dirk is a self-proclaimed geek from Onamia, Minnesota, and it is not likely anyone would disagree with him. While he has hopes to one day move out on his own and head to the Twin Cities area, he currently resides at home with his mom and stepdad, along with their three cats.
When he is not moonlighting as a Twitch streamer, listening to old school rock music, or consuming sci-fi novels, he is working with his mother to run and operate a myriad of trades. Dirk is a prolific canner of pickles (lovingly nicknamed “Pickle Dirk”) and knitter of hats. Between manning the summer farmer’s markets and growing his Etsy shop, Two Left Hands Knitting, Dirk stays fairly busy as both a creative and craftsman.
But even amid a vibrant life, with passions and hobbies in full swing, the day-to-day can prove to be a collision of being mundane and sometimes unmanageable. Dirk has a tendency to live inside his thoughts, and still finds himself working to make sense of the world while trying to navigate his place in it. Because he was diagnosed early on, right around age 5 or 6, Dirk has mastered the art of simultaneously communicating and masking his life with ACC.
“I like to describe my ACC to people as: ‘My brain has kind of a hard time talking to itself, so everything I do takes a little bit longer than it does for you.’ It’s an oversimplification, obviously, but it makes for a pretty good, abbreviated way to describe it in layman’s terms. In personal terms, ACC is ‘a pain in my ass’ that I’ve had to live with my whole life. Everything is harder and slower because of both my physical symptoms as well as my neurological symptoms. When it comes to describing the variance with ACC, I say to people every case of ACC is different because there are a lot of nuances to the disorder, co-morbids and other things like that, that can complicate the diagnosis in a lot of ways. Even the people on a similar functionality level have a lot of variance in their own experience, and some may be experiencing something that they don’t have a name for.”
Though Dirk has built up endurance to manage his life with ACC, it can still affect him in many ways, even within the space of an hour in a day. The primary product of ACC is cognitive delays. This inevitably causes him to take a little longer to process speech or even verbal instructions. His brain operates in the realm of the immediate, with little deviation to ongoing activities or thoughts. He says he also typically has poor coordination and reaction time, making it difficult to physically do certain tasks; tasks that most people take for granted.
After a few exchanges with Dirk, it is evident that he is wildly self-aware and brilliant in many arenas. Though he has been through the ringer when it comes to holding a steady job, one that specifically meets necessity and satisfaction, he is still hopeful and committed to creating. He is no novice when it comes to writing or painting and reflected that he should begin pursuing these mediums with more intention – especially as he has several novel ideas circulating in his head.
When asked about who has had the greatest influence or impact on his life, Dirk immediately reflected on his late father. As he gets older, Dirk believes that he grows to be more like his father and is thankful for that. Among several special education teachers from his past, Dirk also pulls inspiration from the comic world.
“It’s funny, but I also heavily idolize the comic book character Matthew ‘Daredevil’ Murdock. Like me, he grew up in a working-class household, and like me, he’s disabled, though his was through an accident. His father was a boxer, as was mine, and he was raised in a religious faith that would stick with him, despite his own faith lapsing with age. He believes in true justice and dedicates himself to fighting for the little guy, which is kind of an aspiration I have for the future.”
There is no doubt that if any of Dirk’s family or friends were to describe him, “disabled” would not make the list. While it is important to recognize that everyone is operating at their own speed and ability, disorders of the corpus callosum are not a life-sentence or the defining trait of a person. Instead, it is one of the many tiles making up the mosaic of who Dirk is. He is kind, brilliant, clever, and well-spoken. He can find humor and excitement in life’s little details and holds a hopeful view of the future.
Dirk aspires to travel the world in a camper, and longs to share his experiences living with ACC with younger people and parents in the hopes that they will learn something from the collection of good and not-so-good things he has bravely endured in his 39 years of life.
If there is one message that Dirk wants to convey to anyone who is learning about DCC or interacting with him for the first time, it is: “Be patient. We are all just walking one another home, no matter how slow or off course it might be.”
This story is part of the Adults with DCC series that showcases the abilities and lives of real adults living with disorders of the corpus callosum. Students at The University of Texas at Arlington interviewed and wrote stories for this series.