Unfortunately, it’s a feeling I’ve grown all too used to, and it’s actually the feeling that gave me the idea to write my own memoir. I mean… I grew up in a family who couldn’t (and still can’t) keep their mouths shut for the life of them. My entire life story has been more-or-less told by other people my entire life, leading to a lot of deeply uncomfortable interactions with strangers, who knew way too much (as well as too much incorrect information) than they should've.
But, it goes much deeper than that. I’m not writing a memoir just to tell my own damn life story. I’m writing a memoir to clarify the bullshit and misconceptions my family has (largely unintentionally) told others about me.
For example, before my ASD diagnosis, my mom always introduced me alongside my Cystic Fibrosis. She wasn’t shy about showing people all of the pills I took, treatments I did, and explaining all of the little details that went into keeping me alive. She didn’t just tell people who needed to know it, either. She pretty much told everyone she possibly could, thinking that her actions would spread awareness and bring in more money for Cystic Fibrosis research.
Meanwhile, my dad helped to create and fund an event called BreatheIn, which (if I remember correctly) first began as a ski fundraising event at A-Basin, then moved into a more typical fundraising event at Blake Street Tavern in Denver. Eventually, BreatheIn merged with the annual CF Stair Climb that happens every summer at the Broncos Stadium. The year this happened, my dad brought me to a CF photoshoot when I was ten years old, where I basically became a literal poster-child for Cystic Fibrosis. Back then, I was just as camera-shy as I am today. I don’t know how my dad managed to convince me to spend three hours of my life posing with the two duffle-bags worth of treatments and medications I required to stay alive.
To be honest, I almost forgot all about this until many years later, when curiosity killed the cat. I typed my full name into Google, and I came across the CF Stair Climb posters with my buck-toothed face plastered all over them online.
Immediately, I brought it to the attention of both of my parents, begging them to get those images of me off the internet as soon as possible.
“I don’t want to be associated with CF…” I remember crying, “I just want to be normal!”
Ironically, a couple years later, I wrote a blog piece for the Cystic Fibrosis Foundation. Now, when I google my name, that’s one of the first things that pops up. However, just below it, an article detailing my wild turkey hunt with Colorado Parks and Wildlife also pops up, which I feel saves me from being strictly associated with CF.
But, is CF really the issue with all of these instances? Well… yes and no. I fucking despise CF with every ounce of my soul. But, since I can’t scrub it out of my DNA and medical records, I’ve learned to (begrudgingly) own it. The problem then lies not with CF, but with other people. Specifically, how other people represent (or misrepresent) who I am, drowning out my own voice in the process. That’s what bothers me the most about all of this.
Thankfully, when I brought the CF Stair Climb stuff to my parents, they immediately got to work getting all of my stuff taken down. How they did it, I’m not sure. I’m just glad that my CFF Stair Climb poster with my face on it is no longer easy to find.
As for the whole fiasco involving Mom's ex. The idiot claimed ownership of a real phage virus company that he didn’t actually own. Mom ended up getting into contact with the actual CEO of the phage virus company he tried to pose as the owner of, and his bullshit was taken down. I’m not sure what happens from here on out, but I don’t care. Not my circus, not my monkeys. Never was my circus to begin with.
However, my mom’s stories about me are still very much visible on the internet for all to find. Given how prominent my mom has become in the Real Estate scene over the last decade, each person she works with and meets through her networking events will likely know about me. Or rather, about the fact that I have CF and ASD. This, as I mentioned before, has led to a lot of very uncomfortable interactions with strangers who know far too much about me, but in all the wrong ways.
So, if not for the conditions I have, what do I want people to know about me? What do I want to be associated with; to be known for? Well… that’s what I’m trying to figure out as we speak.
For one, I would like to be known for my writing (which I do a lot of… a lot of), in which I do talk about how CF and ASD (and other problems) helped shape me into who I currently am. But, by doing so, I don’t make CF and ASD the highlights of my life… if that makes sense. The highlights of my life come from me overcoming these challenges, with the help of my family, friends, top scientists and doctors, my faith, and whatever interests I have.
The problem is not that my mom tells people that I have CF and ASD. The problem is that’s all she talks about to people (at least… all she talks about that other people care to know more). She doesn’t mention my hobbies, my interests, or the progress I’m making as I gradually learn how to live like everyone else, after Trikafta threw my life into a tumble dryer (in a good way). It’s all about the many times I scared the ever-loving shit out of everyone even remotely involved in my life, and how I still struggle with my disabilities today.
Of course, that’s an important story to tell. But, so is the story of how I’ve learned (and am learning) to heal from those terrifying near-death experiences, and how I’ve learned (and am learning) how to live with my disabilities. Keywords: heal and live.
Indeed, it takes a lifetime to fully heal from medical trauma and learn how to live with the remaining disabilities I have. But, I’m working my ass off to learn how to live a long, fulfilling life, even after everything I grew up dealing with. In other words, I’m rapidly learning how to focus on the things I can do, and less on the things I can’t do, while also figuring out ways to overcome certain aspects of my remaining disabilities so that my list of can’t-do’s shrinks while my list of can-do’s grows.
Unfortunately, my family still focuses on all the stuff I can’t do, rather than the stuff I can do. Worse, they can’t seem to shut their mouths about it.
This past Easter, my family largely focused on my health, and the miracles it took to get me where I am now. But, the conversation about me never moved past the topic of illness. I never got to talk about college, or the pictures of wildlife I’ve been taking, or the cottonwood tree I single-handedly pruned this past weekend, or how I’ve been working on getting in-shape again as the weather becomes nicer. Instead, all that my family focused on were the times I was at my sickest, and how awesome God was for saving my ass when nothing else could.
That is what bothers me the most: my family’s inability to move past the past. To recognize that I’m not the sickly little creature I once was.
