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At first, I thought about making a fictional book of someone who has lived a life like mine. But what’s the point in hiding behind a glorified novel? There isn’t. So I’m going to tell my story, as real, and raw, as I can.
I suppose it began when I was born. October 9, 1992. In a way, I wasn’t supposed to be born. My mom was told she wasn’t able to carry kids. So when she found out she was pregnant with me, on Valentine’s Day, her whole world became about me. And unfortunately, that hasn’t changed much. I’m grateful for my mom and my dad, and I will love them for all of eternity. But there’s been times when I’ve wondered if I really belong here, if it’s worth having me take up space, and time, and energy. I’ve wondered, if my parents could do it all over again, would they do it the same way? Would they still want me? Because I could understand bowing out; I could understand being so overwhelmed that they’ve wished for a different life; because I have. But that’s understandable, right? What sick kid hasn’t imagined a different life for themselves?
So I guess the real “adventure” started when I was nine months old. For the longest time, I was a fussy baby. And I clearly wasn’t digesting my food right (I’m not going into those details, for the sake of you, the reader). My parents took me to countless doctors, until one suggested the possibility of me having Cystic Fibrosis. They did all the necessary tests, and to my parents’ dismay, I was diagnosed positive for Cystic Fibrosis. It’s a terminal illness that affects the lungs and the digestive system. I got it because both of my parents were carriers of the gene, and when they got together, it produced a baby with CF (a much shorter way to address the disease). My parents were told, at the time, that they shouldn’t expect me to live longer than eighteen years. To say that they were heartbroken is an understatement. They were devastated. From being told they could never have children, to having a child that wouldn’t live past her eighteenth birthday. But CF is all I have ever known for myself, so I can’t empathize their heartbreak.
So I started to have to take pills. Pills every time I ate. Vitamins. I had to start with CPTs, or Chest Physiotherapy, where my parents would pat firmly on my back, chest, and sides, to loosen up the mucus in my lungs so that I could cough it up and keep my airway clear. As I got older, I could start wearing a therapy vest. The vest would fill up with air and then start vibrating, mimicking the purpose of the CPTs. It was easier on my parents, but I loathed that thing. Whenever they told me it was time for my treatments, I would run and hide, often behind the couch, which overtime, made it a lot easier for them to find me. I had to use a nebulizer machine, so I could inhale my Pulmozyme, which helps to thin the mucus that it’s in my lungs, my throat, and my sinuses. I was consistently underweight, as that’s just another symptom of Cystic Fibrosis – not being able to adequately gain weight. Which, growing up in a society focused on being thin, wasn’t necessarily a bad thing in my eyes.
When I was one, my parents moved us to Arizona. Because they loved it, but I think it was also believed that not growing up in Cleveland, Ohio would be better for my health; humidity makes it a lot harder for me to breathe, and often clogs up my sinuses. I had to go to doctor appointments at least once a month to see a pulmonologist, and CF specialists. There were non in the small town that my parents had moved to, so we have to drive two hours to the big city of Phoenix to see my specialists. I remember hating them. I know they were only helping me, but they poked and prodded, and there were always needles, and they always wanted me to cough as hard as I could, and I hated it. It was inconveniencing, and uncomfortable. So my parents often had to bribe me: if I did could at my appointments and didn’t put up much of a fuss, they would take me to the Disney store at the mall and buy me something that I wanted. Weirdly enough, all I usually wanted was those cool little wash clothes that come shrink-wrapped in some cool shape, and then magically unfold when you put them in water. The CF clinic also always gave me a Beanie Baby when I was done with my visit. That was pretty cool to me. I still have most of them up in my childhood closet and my parent’s attic. I wonder what their value is now?
When I was three years old, I had my first sinus surgery. I don’t know all of the nitty-gritty details of the surgery, I just know that they go in and clean out whatever gunk has grown in there that you can’t just blow into a tissue. I remember bits and pieces of the whole thing like it was a dream. I remember the view out of my hospital window. I remember my roommate that was there because he shoved a crayon up his nose that they couldn’t get out. I remember watching Barney on the small television, mounted toward in the ceiling in the middle of the room. I remember walking around, dragging my IV pole with me, and checking out the “kids room”, where a bunch of us sick toddlers could go play with all sorts of toddler toys. I don’t remember being that interested in it. I remember the anesthesiologist taking me into a dimly lit room to choose the facemask I would wear when they put me to sleep. I remember even getting to choose the “flavor” of the anesthesia. I think I chose strawberry-banana. I remember it didn’t taste how I expected it to.
I was a ballerina. The doctors wanted me to be physical and get exercise. And I loved to dance. That’s how I met my first real best friend – Maggie. We danced, and tapped together. It was a blast. We ended up going to the same kindergarten together, which I believe was plotted by our mothers. Which was okay, because Maggie was as true as they came, and I loved her for it. I was kind of an oddball child, so it made it hard for me to make friends. I was also seriously boy-crazy; I’d chase them around whether they were my age or several grades higher than me. But I was also very much a creative, free spirit, with an expansive imagination.
My parents tried to make everything normal for me, despite all the things that weren’t supposed to be normal in my life. My birthday parties were bright, and fun, and very typical for a kid my age. When I was five, I got my first bicycle. It was shiny, and pink, and new, with a matching helmet. My dad was the one to teach me how to ride. We lived pretty deep into the forest, and there was a dirt road loop around our neighborhood that we would go hiking almost every night. My dad took me down the small hill in front of our house. The only problem was, I’d forgotten how to use the brakes! I crashed into a ditch on the side of the road. My dad had to pull gravel out of my mouth and out of my cheeks and my face. I remember I had to swish with peroxide. But that didn’t stop me from running around, like a crazy child, doing crazy children things.
When I was three, my mom and I were watching The Lion King, and she fell asleep. We were up in the mountains, so we usually got a good amount of snow. I stripped out of my clothes and went running butt-naked through our front yard. Luckily, we were close with our next-door neighbors, and when he saw he running around like a little yeti, he picked my butt up and brought me into my house, casually waking my mom up to inform her of my shenanigans. He was apparently, quite unfazed. So he definitely had that going for him. Even when I, was yet again in the buff, I ran through his entire house during his family dinner, with my parents close on my heels. Guess what I was running from? My treatments, of course.
One day, while Maggie and I were unsupervised, we crept into two-story garage, and crept up the stairs to admire his stuffed animal collection (not the fun beanie baby kind) and his shiny pool table. I remember him yelling at his, and it scared us so bad that we never went back, and I was terrified of him, even though he was the sweetest older man there was. And lucky for us, his wife was a nurse. So when I had an allergic reaction to an antibiotic that I had been given, his wife knew exactly what to do, and took care of me. Coincidentally, she was also the nurse that would later help my mom give birth to my sister.
When I was six years old, my parents sat me down to have “a talk” in the living room. I wasn’t sure what it was about, but I knew that I didn’t do anything wrong, so it couldn’t be that bad, could it? Wrong. My parents told me that my mom was pregnant with my sister. I’m not sure why I reacted the way I did, but I was furious. I started crying – just absolutely sobbing. I think I might have thrown an ‘I hate you!’ in there, as I ran to my room to sob in my bunk bed.
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