So for those of you who don’t really know much about me, I have Cystic Fibrosis. It’s something I have always struggled with emotionally. Physically, I have been pretty damn lucky. But when it comes to the emotional side I have always felt so “detached” for lack of a better term. I ignore it, I make light of it, I always act like it doesn’t bother me every single second. And I think recently I’ve discovered the reason for the “lack of connection” to the emotional side of it. and it was just that- A LACK OF CONNECTION. My family and I have recently partnered with a well-known individual who has his own cystic fibrosis foundation. He focuses on that connection which is desperately needed in the cystic fibrosis community. Don’t get me wrong, the amount of research that organizations such as the Cystic Fibrosis Foundation does is incredible and most likely I wouldn’t be sitting here writing this to you had they not made such great strides in that aspect, but what about hugging a mom and dad with a 6 year old son with Cystic Fibrosis who stay up worrying every night about what their son’s future holds?
What about meeting (and my meeting I mean waving a screaming to each other from across a bar) a 31 year old “B-E-A-U-tiful) woman who underwent a double lung transplant and is thriving and did I mention stunning? This foundation does that. I have always felt like the reason for my lack of emotional connection with my own disease is because something always felt like it was missing. You can even ask my parents. My mother swears that growing up, the cystic fibrosis “community” was non-existent. They may have even purposefully kept us away from each other for fear of infections or bacteria being passed from one person with cystic fibrosis to another, essentially contaminating each other. This foundation, The Colton Underwood Legacy Foundation, has given me purpose that I so unknowingly desperately needed. I finally feel like I belong somewhere. I have “people” and I can give back to those families and individuals who have had cystic fibrosis impact their lives in so many different ways. Watching an 11-year old become an honorary Tennessee Volunteer cheerleader, or a 6 year old play laser tag, bumper cars, and do a ropes course with Colton, just fills my heart with so much joy and hope for the future. I feel full, complete, satisfied.
Not to mention that these recipients are receiving life changing medical equipment from Afflovest that without insurance can cost $16K a pop. I don’t know about you but I don’t have that type of money to throw around willy nilly. And for us, its not really an option. We HAVE to have it. So if you haven’t looked into what this foundation does or the impact it has I highly recommend checking out the website at http://www.coltonslegacy.org.
Another thing that you should know about me is that I LOVE WINE, more importantly, a good rose wine. And what’s better than a wine that supports a good cause? Nothing. Literally nothing. So I’ve been given a unique opportunity to offer a 10% off code for all orders of the very special legacy wine label. Please visit http://www.coltonslegacy.org/legacy-wine for your order today as quantities are limited. And I’m not gonna lie, you may want to order as much as possible because who knows how long it will be in stock. I am for sure stocking up. Us code “EMJAY10” for 10% off your order today!
When you think back on your childhood, everyone always can think of their first “memory”. Maybe it was the first time you played soccer, or the first goal in hockey. Maybe it was your first recital, or the first fight you got in with your sibling. Maybe you were 5 years old, maybe you were 12. Everyone’s first recollection is different, but it is burned into your memory. You can remember what the weather was like, you remember the smell, you remember, every detail about the room you were in, about who you made eye contact with. This moment will always be a part of you because you have stored this moment in your long term cortex. For me, this memory isn’t what an average person would expect.
I was 11 years old. It was 2001. My parents had just allowed me to make my very own AOL account. This really makes me feel old just thinking about how far technology has come. What I really wanted an AOL email for was for the instant messaging feature called, “AIM.” My best friend at the time was Honey Girl (this was her nickname and so for her own privacy I will refer to her as such). Her house was just behind mine, but we thought it was so cool that we could message each other form our houses. It was like the advanced version of the cans on the strings. What was that called? Tin can telephone. Except the cans were our computers and the string was the internet. Well, with the internet comes a vast black hole of information and once you start you really can’t stop. Honey was much more technology savvy than me for an 11 year old. She knew how to manipulate a search engine and how to look up juts about anything. This may have to do with the fact that my parents were a lot stricter regarding technology than Honey’s parents. And looking back I wonder if this was intentional. Were they trying to postpone the inevitable information I may stumble upon? Were they trying to protect me? Who knows.
One night Honey Girl and I were instant messaging. About tons of nonsense as usual. Until one particular moment that will be seared into my brain forever. Honey knew that I had Cystic Fibrosis. Did she know what it meant? Probably not, I mean, I don;t think I even knew what it meant. It was just an adjective that I had heard over and over to describe myself. It wasn’t ever a noun, it wasn’t ever a physical object. It was just a word. I had heard it time and time again. But at this particular moment, Honey sent me a website. so nonchalantly she said it was about cystic fibrosis and I needed to go check it out. I clicked on the link. I started reading. The words that I remember most clearly were things like “statistics” “lifespan” “average age” “death”. Mind you, this was 2001. Things have come a LONG way from where they were. But as an 11 year old can you imagine feeling like something as serious as this was kept from you? At least that’s how it felt. How could I prepare for the thought of dying? How could I be worried about my life span? Why is there an “average age” of someone like me? What does this all mean?
I think this is the first moment I ever felt like my life was not my own. That things were spinning out of control. Control that I was so certain of carrying myself. It was no longer mine. This adjective to describe me was no longer an adjective. It was a noun. It was a person. It was a shadow that came in a stole my control in the most ordinary of moments. Everything had changed, right then. At first I was angry at my parents. I asked to talk to them and I screamed, I cried, and I asked why. Why me? Why didn’t they tell me? What does this all mean? Am I going to die at 18? 35? 50? All i can remember is that they didn’t know what to tell me. They thought they had explained it all, but they were wrong. Until the words were read by me with no fluff, no extra nonsense to make it seem less terrifying. I truly didn’t understand the seriousness.
When children are little and cannot say big words, like cystic fibrosis, they use words that sound a lot like what they actually are. The story of “65 roses” can be traced all the way back to 1965 as a term to help young children learn how to pronounce the name of their disease. Kind of ironic though. Something like “65 roses” without knowing what I know, would make one thing of something overwhelmingly fragrant, beautiful, sweet, colorful. Can you imagine a room, empty of nothing other than 65 roses? What would that look like to you? To me, it would look quite the opposite of those words: Putrid, unsightly, sour, colorless. This disease, is not everything that “65 roses” alludes.
So what is cystic fibrosis. Well its a combination of a lot of things that affect everyone that has it completely differently. To put it simply, it is a genetic disease that affects your lungs, mostly. People with cystic fibrosis are not able to break down mucus in their lungs like a person that is unaffected by the disease. Due to this, it is easier for us to contract certain bacterias and more difficult to get rid of them once we have them. This in turns directly impacts our lung function. Gradually creating scarring within our lungs and in turn reducing lung function even more. A viscous cycle.
After this pivotal moment in my life. Things definitely changed. Doctor’s appointments had a different meaning. Certain words would trigger me into a complete “come-apart.” Relationships changed. Comments people made about my cough! Oh that would crawl under my skin. Before I didn’t even think anything of it. “Are you ok?” they would say. Fuck no I’m not ok! But is it worth saying that to someone? Nope. Definitely not. Because then I would have to basically explain my whole life. It took me a long time to learn that its easier to say “yeah, I’m fine.” Because not everyone deserves to know that intimate most vulnerable side of me. Even some people that I thought did deserve to know, such as best friends, or boyfriends, proved me wrong. Conspired with my shadow against me. Turned this disease into a reason to leave, or as a weapon against me. Can you imagine what it would feel like to learn that someone who are in love with cannot love you back because of something you cannot control. “It too much for them to handle.” It’s too hard.” “It’s too sad.” “Who would want to be with someone with a certain death sentence.” It a huge emotional blow.
Now as a 28 year old, I will say that it hasn’t been all bad. I’ve learned so much about myself through having cystic fibrosis. The most important thing I think is that buttering something up is not the same as telling the truth. Being straight forward has such a drastically different impact. I wonder what kind of impact it would have had on me if my parents had told me straight up at 11 years old what this phrase would do to my life. I wonder how it would have impacted that moment in the instant message with Honey Girl if I was able to explain what she had found instead of feeling like the floor below me had disappeared. Instead of free falling into a bottomless pit in my stomach. I knew in that moment I would never say anything less that exactly what I wanted to or needed to say. Has that created animosity? Absolutely. Do I regret being straight forward? Not a bit. Do I think Cystic Fibrosis has changed me for the better. Yes. I try more and more each day to live in the moment. To appreciate every success AND every disappointment. Ti learn something from every experience. Will my “lifespan” truly be shorter than the average human being? Maybe. Maybe not. But will I feel as if each moment has been executed with purpose? Every experience has been carried out to its fullest? No doubt. So maybe what you can take away from “65 Roses” is not beauty, or colorfulness, but The ability for those roses to grow, to soak in the sunshine, to fill its core with water to feed their growth, to bloom, to flourish, and to wither, As all life does. But those who were able to witness the roses through all of their transformation are better off after knowing them, witnessing them, sharing what they’ve observed, and how it has made an impact on them. You are only fulfilled in life if you leave the world a better place than when you found it. After all, isn’t that the purpose of roses in the first place?
“She made broken look beautiful and strong look invincible. She walked with the universe on her shoulder and made it look like a pair of wings.”
This is where it all starts, or should I say, this is where it begins again. Life is what you make it. And for me, it seems to have been nothing more than making it from one point to another. Hey, but what about the in between? Shouldn’t that be part of the journey too? This life that I have lived thus far has been so much about the next things, and the thing after that, and the thing after that, so much that I think I have lost touch of what it all means or what it should mean.
Those of you that know me know what I struggle with and why but for those of you who don’t, let me informally introduce myself. I’m EmJay. I have cystic fibrosis. I’m a mother, I’m a fighter, I’m the most genuine individual you will ever meet. I don’t apologize for it and that’s ok. I’m not particularly religious, but I have my beliefs. With that being said I’m pretty sure Jesus didn’t say “you have to tell the truth, but only if it doesn’t hurt someone’s feelings.” Anywho, back to me (insert hair flip). I’m wild, unapologetic, unfiltered, and unstoppable. Society may think they have control of my ways, but, boy, were they wrong. That’s where this idea formed. The idea that I can have a “safe place” to rant, to talk about whatever whenever with whoever (that’s you).
I want you to know what I’m all about. Well to be honest I don’t know yet! I am evolving every second. So are you. This is the important part though. WE GET TO CONTROL HOW WE EVOLVE. Join me on this journey and see what you can control in your own life and what you can’t. I’ll talk about my life with cystic fibrosis, art, food, fashion, design, and anything else that tickles your fancy (or mine, cause hey, why else would I be doing this?). Oh, and another thing. If it offends you, don’t let the .dontgiveafuck hit you on the way out. Xoxo.
p.s. Yes I’m Gossip Girl
“The difference between my darkness and your darkness is that I can look at my own badness in the face and accept its existence while you are busy covering your mirror with a white linen sheet. The difference between my sins and your sins is that when I sin I know I’m sinning while you have actually fallen prey to your own fabricated illusions. I am a siren, a mermaid; I know that I am beautiful while basking on the ocean’s waves and I know that I can eat flesh and bones at the bottom of the sea. You are a white witch, a wizard; your spells are manipulations and your cauldron from hell yet you wrap yourself in white and wear a silver wig.”