Still Sinking In….

Only a week has passed since I received the news. So much has happened in such a small time, for me it felt like forever.

I’m not going to lie. Despite my written optimism I’m completely devastated. My equal left and right brain tendencies have been at war ever since.

Feelings.

Logic.

Feelings.

Logic.

Feelings.

LOGIC DAMMIT.

Even I know that can only go on for so long. I was numb for a couple of days. I couldn’t cry for more than a couple of seconds. Especially when Mom looked at me with her heartbroken eyes. She had fears too. Only difference is, I can’t even fathom those fears. Only prepare and accept any possibility. I don’t have a choice. It’s my life, I refuse to cower away from it. Therefore, Mom and I talked about buying an automated external defibrillator. You know, just in case I drop randomly from arrhythmias or cardiac arrest. *fearlessly casual* That is if I don’t need one installed internally. Which at this point Mom mentioned, ‘They may put one in even if you still don’t have symptoms. This is still high risk. So maybe we should wait until your follow up appointment.’

NOPE. Nope. nope. Can’t fathom. Too much. Oh look…. Now I’m crying…..

Doom and gloom held over my head for two whole days. Then I met up with an old friend of mine for a, ‘Holy S&#* this sucks!’ drink. They were delicious, and sure enough, got me tipsy enough to feel carefree again.

BRB – Being jaded is no fun at all. Let’s play some Dungeons & Dragons to get over that. *nailed it*

But my friend, we’ll call him H. mentioned something that meant so much, even though it’s so little.

‘I’m just interpreting, but it seems kinda like another person with an epi pen. Right? I mean you could die yeah. But then you prevent it, and you have to carry something around with you to do so.’

Well hello sunshine…*sings ‘I Can See Clearly now’*

Hallelujah! That’s it! I’m just another person on this earth who’s allergic to…. My own heart? Okay bad analogy.

He’s right. Only difference is my issue is heart related, and I’ll need a larger much more fabulous purse to go with it! The randomness of manifestation is the same, the time limit is the same, the severety….and before I knew it the tendrils of normalcy began creeping back into me. I felt like I could breathe again.

If it wasn’t for H.  I wouldn’t have been able to find a perspective change on my own. Not for a long while anyway. I needed that so much. The drinks were great too!

I posted the results because I felt I should include all of those in my life who have lovingly supported and encouraged me so far in something that was bigger than I could imagine. My own DNA. School was hard, College was harder, but I needed those to gain discipline, learning skills, technical and interpersonal skills. I chose those challenges so I could rise and become…. Well whatever I wanted to be really. I have a lot of plans…

Back to the point. I shared something so frightening and raw that even I questioned my decision to share it, but if I never shared it. H. would not have known my struggle. He would not have reached out and shared his light with me in my Grey Haven, (LOTR reference, everybody gets one!), and I wouldn’t have been able to get back on the horse in time to complete my project this Friday. Or even gain any semblance of self in time for the first follow up appointment today with my Genetic Counsellor, but that update is for another post.

I’m going to continue to share, because everyone goes through something like this. It may not be this disorder, or even a health issue at all. Life likes to slap you around and laugh at your shocked face, only to laugh more when you get back up and try again. Only the second time life laughs, it’s not of mocking, but pure unadulterated pride and joy. I truly believe that. We become so much stronger when we overcome our biggest challenges, and that reward will always taste the sweetest. Why not share the sweetest reward with my dearest friends? To do that, includes experiencing the journey, together.

Note: Life may or may not be a sociopath? *record scratch*

Well, here’s to my new future. A whole new outlook, (again), a new challenge and therefore, a new reward.

May Your Adventures Be Wild and Your Heart Be Strong,

~ Chelsea Alice ~

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. Chelsea 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. Chelsea 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,

~ Chelsea Alice ~