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I Have the Gene…What Now?

In my Facebook post yesterday I had shared the days plans. Get the call, go from there, move on, be strong.

Let me change it to what I was really thinking. Get the call, rejoice for a negative, celebrate with loved ones and friends, move on, be strong.

‘Well %$*% me right?’

I literally said that multiple times yesterday.

Then the dread set in. I had just shared this experience with everyone on Facebook and now I have to break this devastating news. Most annoyingly, relive it. I fully intended to delete the post. Pretend like nothing happened. I needed my time to adjust however best suited me. But then I remembered these words from that exact post.

“I’m sharing this with you all because I want to show everyone that no matter what happens to you, even if it’s dooming, as long as you have the love and support of others and a steadfast zest for life. NOTHING can bring you down, only slightly set you back.”

Practice what you preach dear, and I fully intend to. It’s what I’ve always done, authentic honest living. I won’t share too many personal details, as research and public knowledge goes I’ll go in depth with the disorder, but my journey has just began and it’s still fresh. I still need time.

All my dear friends growing up knew the drill. Cirey fainted or had chest pains/palpitations? She went to the hospital to double check? No sign of a disorder? Yay! All good let’s move on, there’s some amateur LOTR larping to be done.

I’m 23 now, all monitoring since I was 9 years old has come up squeaky clean. This disorder has been found in my family members with this new technology as early as 15. My own childhood Cardiologist said to my Mom and I.

“I’m 98% sure she doesn’t have the gene.”

I’m officially the 2%, doesn’t that make me unbelievably rich now or something? (Political Pun FTW)

Even my Genetic Counselor said, “We are just as shocked as you are Chelsea, we didn’t see this coming.”, which I somehow heard between my wailing cries of a woman virtually stabbed in the heart.

Why did I share this with EVERYONE on Facebook? I asked myself that too after the fact. I’m not one to do the Facebook posts that involve overly personal details unless I need to push some project deadlines and collaborations. I never no show or procrastinate. Professionally I want everyone to know whats really going on. It’s my duty to sustain a reputation of reliability and accountability. Yes, life happens sometimes, so when I have to, I’ll share it.

There was also a part of me that was super amazed by the whole process. With one blood test I can put this family curse behind me. Make an intense legend to tell my future kids, “Our family has defeated a great medical calamity.” How cool is that? Also, what if someone that had the opportunity to do the same test was too scared? Or even better, what if more research was done for more disorders to catch susceptibility in people before it manifested? Yes. Let’s raise awareness while I can. Once I’m cleared, I won’t have a say anymore anyway.

DAMMIT.

Life 1. Cirey 568. Because I have worked so damn hard to be where I am today, and yes. There is a silver lining to this. Bare with me here.

Here are some properly sourced, reputable articles about the disorder. Specifically, the gene I have *cringe*. You don’t even have to read them. The titles go far enough really. Just don’t panic. I’ll explain why in a moment.

http://www.chrcrm.org/en/future-health/newfoundland-researchers-crack-genetic-code-sudden-death-cardiac-killer

https://www.theglobeandmail.com/life/newfoundlands-sudden-death-riddle-resolved/article675761/

For those of you that like a more scienc-y perspective, check this out.

http://www.mun.ca/biology/scarr/VF_ARVC_Introduction.htm

I could go into detail about what happens in medical layman’s terms but that’s for another post. I need a break from thinking about this anyway.

I decided to get this test done to put it behind me once and for all. Never look back. Now I’ve got something better. I have the knowledge of my susceptibility, the means to prep, plan, and educate myself further if the disorder does manifest in my future. That’s invaluable. Even though the news was like a ghost coming back to haunt me, I know that I will be ready for anything, and I will be fine no matter what happens.

Disorder or no disorder my life expectancy won’t change. The technology nowadays is getting fantastically nano sized and cyborg like. Worst case scenario? I get to be one, (well only like 1% robot, 99% human), so close enough!

I’m in the process of making lots of doctor appointments and follow ups. Geographically I’m in the best location in the world. My cardiologist is the leading specialist in this disorder and worked on my Dad for decades. He’s practiced, that’s for sure. I’m in qualified hands. Not to mention my entire family has done this song and dance before. I’m good y’all.

I want to thank all of you for being so amazingly supportive. If you have any questions at all feel free to comment on this blog and I will probably make a post about it. Every time something happens in my life I have a tendency to hideaway and kick box myself out of it. Only to come out with a couple bruises and a smile of victory on my face. The thing is, once I share my victory with my friends and family, I hear the same broken record.

“Why didn’t you come to me? I wish I could have been there for you. If anything like that happens again please let me know.”

I’m used to fighting my own battles, taking it by the horns as you will. This time, I’ll take heed to what you all said. Here I am naked and vulnerable in my mutated genetic sequence. My DNA is flawed and not surprisingly, inherently Newfie, but I wouldn’t change it for the world. Thank you all so much for your warm, kind prayers and words. I know it worked. Even though we didn’t get what we were hoping for, the truth is, it’s been in my DNA since I was conceived. I’m accepting my reality and doing something about it. Except this time, I’m not alone.

One other thing. It is possible for me to live to 100 and never get a lick of this disorder, uncommon, but possible. If my DNA says, “You suck!”, but my heart says, “Sticks and stones b*%#@!”, that would be awesome. There’s no test to take for that though. I have to live my life like I did before genetic testing was even available. Accepting any possibility and being okay with it.

I can take this a lot of ways. Am I cursed? Doomed? An abnormality? Perhaps. I choose to not think of it that way. I don’t have the slightest inclination of any issue in my young heart, despite my DNA’s permanently written code. Therefore, I’m a damn miracle. I’ll be grateful for it everyday.

May Your Adventures be Wild and Your Heart be Strong,

~ Cirey Londiel ~

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