Note: I guess this may be a good preface to my memoir. It's still rather rough, but the structure is there and it can easily be polished into a publishable piece. My brain's just a bit mush at the moment because the final month of the semester has kicked off, and I'm working on a lot of school crap along with this (and many other things). 

Oh, and I also came up with a nickname for my mom's ex: Florida Man. 

 

“Guess what, Maya?” Mom asked as we made our way to the dog groomers. 

“What?” I yawned. 

“Florida Man hit a new low.” Mom replied. 

“Yeah, and?” I rolled my eyes. 

“He created a website advertising a phage therapy business, so that he can take the money and move to Puerto Rico. He’s using your story to advertise it.”

Hmmm. That’s great.” I shrugged, completely unsurprised, “Is he using my real name?”

“No, he changed it to Mary.”

“Cool. So long as he isn’t using my name, I don’t care.”

“Why not?” Mom asked. 

“Cuz it’s none of my business. There’s nothing I can do about it, legally. Florida Man's bad at money and marketing anyway. So, in short, it’s not good for any of us to lose any peace over your ex’s new failed project.” I said, matter-of-factly, “That said, it’s still incredibly scummy. If there’s a hell, there’s a special place there for people who do things like that.”

“But why don’t you care?” Mom asked.

“What can I do about it?” I replied, “Unless he was using my real name, there ain’t anything I can do. Hell, even if he did use my real name, he’s too broke to sue. It does, however, remind me of why I’m writing my own memoir. To take my story back from everyone who has used it in ways I do not approve of.”

“When is it coming out?” Mom pried. 

“Whenever it’s ready.” I replied.

“When’s that?”

“When I deem it ready.”

“Isn’t it ready now?” 

“What do you think?”

“Yes!”

“No.” I growled. 

“Does my ex’s shenanigans motivate you to finish it sooner than later?”

“I guess…” I trailed off, “I’ve been meaning to add some to it this week. That is, if I find the time.”

“Don’t you have time?”

“I will if I get all of my coursework done by this weekend.”

“Will you?”

“I don’t know. Check my calendar.” I said, “Listen, I’m tired. It’s too early for this. I’m gonna bring the dogs into the groomer’s, then we’re going home and I’m going back to bed.” 

With that, the conversation ended. 

As I lay down to snooze to wait for my dogs’ spring grooming session to end, the weight of the situation finally began to sink in. I wasn’t scared or worried. I just felt icky. Like my privacy, once again, had been grossly violated. 

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. 

Yes, I’m still disabled, meaning that I couldn’t work a full-time job and can’t go to college full-time either, because I’ve yet to find ways to fully cope with my anxiety and the “aftershocks” of Trikafta. But, physically speaking, I’m not disabled in any meaningful way. It bothers me that most people just can't figure that out. 

But, what bothers me more than that, is the fact that when people find out about my conditions and my past, that's all they tend to see of me. People tend to see my disabilities before they see me (assuming they know a thing or two about me from my family). People tend to treat me very differently when they don't know me, verses when they do, and not in a good way.

Oftentimes, when people find out about my CF, they go from treating me like everyone else, to treating me like a fragile little flower on the verge of death. When people find out that I'm Autistic, they go from treating me like everyone else, to treating me like I'm a feral kitten with a traumatic brain injury. Unfortunately, when people are introduced to me by my family, they already know about the CF and ASD, and therefore treat me differently right off the bat. It's damn near impossible to get people to see me for who I am, once they find out that I was born the way that I was. 

That is largely why I'm writing (or, publishing, rather) a memoir. 

Also, my memoir writing serves as a form of therapy for me. After all, I grew up in chaos. I also grew up in the middle of a blended family's bullshit. Indeed, I was (and, in a way, still am) the glue that kept a broken, blended, fighting family together. Needless to say, I'm sure that alone dealt a lot of damage on my mental and physical health.

But, someway, somehow, I survived my childhood relatively intact. 

One of the many reasons why I miraculously survived as well as I did, was because I've been memoir writing ever since I could scribble a coherent sentence down on a sheet of paper. I wrote to get my feelings off my chest, and to just document whatever happened to me on a given day. When I first began my writing, I don't recall ever talking about the big issues impacting me at the time. However, as I entered my teen years and began to fully realize the severity of the circumstances I was born into, my writing began to look a lot more like what I write today. Albeit, a little less... polished... but the spirit was still there (if that makes sense). 

When I ran out of storage space on Google Docs for the first time, I got the idea to attempt to put together a publishable memoir from the 15+ gigabytes of documents I'd typed up ever since I created my first email account. This happened around the same time I had to drop out of school for awhile to fight off a major Pseudomonas infection.