It’s funny, I never dwelled on my hearing loss, but I used to say to myself as a teenager, “Yeah, but there’s got to be nothing worse than losing your vision.” Having been born with a profound hearing loss and wearing hearing aids since the age of 2, it was just a fact of my life I had to deal with. I spent my early childhood catching up to my peers academically; so much so that my 2nd grade teacher, Mrs. Barshap, told my mother she had “never met a child who knew so little.” Little did I know, life’s cruel sense of humor was waiting to deliver the punchline. I mean, c’mon, losing my vision on top of being 80-90% deaf? That just wasn’t fathomable.

That punchline was delivered in the summer of 1994. In between graduating high school and going off to college, I came to the realization that something was off with my vision at night. A doctor’s visit confirmed it: Usher Syndrome Type 2.

Brendan pitching in high school

In 2014, with Uber and Lyft finally making L.A. navigable for me, and longing for social comfort and support, I moved back to my hometown. There, I quickly met my future wife and eventually welcomed a fierce, ready-to-kick-some-ass daughter with arguably a bit too much sass. Mercifully, she is not a carrier of the Usher syndrome gene, as my wife isn’t either.

 To some degree of solace, however, disability insurance meant I could finally focus on enjoying each day with my incredible wife and daughter without feeling like I was stepping into the boxing ring every. single. work day. I now mentor students and young adults who either have disabilities or are interested in marketing careers. It’s a sweeter life indeed, with the humor a little less dark—except when the aforementioned little one’s sass wants to test some limits, causing a very different spectrum of bewilderment.

Brendan’s 50th birthday celebration in New Orleans

A family photo of Brendan, his wife, and his daughter in London, 2024.

Will there be more? At this point, I just assume so, but hopefully at least not in the form of total blindness. If we can continue to generate awareness and fundraising to accelerate medical advancements to the point of true breakthroughs for the entire Usher syndrome community, then perhaps all of us afflicted by or connected to this disease will one day be able to more easily laugh along with life’s sense of humor.

 The humor motif in this essay wasn’t premeditated. I’m no comedian, nor am I a jokester, despite my incessant sarcasm. When asked to write this, I decided to just start clicking on the keyboard, curious to see how I would naturally articulate my story. My therapist has noted to me over the years that when I bring up any of my hardships, it’s usually with a smile on my face. I may not be aware of it, but I absolutely know the reason why: I’m smiling at the absurdity of what I’ve had to, and continue to, deal with. I was raised in a family that values humor immensely.

My goal in sharing my story here is to hopefully mitigate some of life’s dark humor (pun sort of intended) for the Usher community. Whether it’s to find comfort with a fellow Usher warrior, gain insights and perspectives regarding parenting a child with Usher syndrome, manage parenthood with Usher syndrome yourself, or navigate the corporate world with a disability, your support matters. By sharing my story, I hope to inspire others to donate to this vital cause, fuel groundbreaking research, and help us rewrite the ending to this punchline once and for all.