One Year…

May 18 came and went rather uneventfully. Just another day of work, this time with a Diploma attached to my name. I had almost forgotten it was the 1st year anniversary of the test results.

To be quite honest nothing has really changed in my life, not negatively anyway. I moved forward with gusto. I graduated from my program for Costume Cutting & Construction, as well as completeing my first feature film as both Actress and Costume Designer. 2018 has been a generous year so far. I am fiercely grateful.

A few days ago I was chatting with Mom as usual and she brought up an interesting point.

“Your cardiologist didn’t definitively say you had until you’re 30 to be implanted you know.”

“He said it might depending on my family history!” I spluttered desperately.

“Chelsea,” Mom gave her usual ‘Mother knows best look’. “You and I both know those odds don’t look good.”

“Mom!” I chastised furrociously. I couldn’t handle talking about in any further.

I’ve been thinking about that conversation ever since. She’s not wrong, the odds aren’t working in my favor. The only thing working in my favor is the fact that I’m female, this disorder is less aggressive in women.

How much time do I truly have? My cardiologist was certainly careful with his words. Which means I’m even more in the dark than I thought I was, therefore my vulnerability increases.

Either way my next round of testing will be completed in the next few months. Those tests are the only certainty I have, even then my certainty only lasts for 1 more year…until the next round.

Ever waiting, ever learning, ever watching. That’s all there is left to do. Which is peaceful enough as it is. I’ll take what I can get.

I also want to thank everyone close to me for not treating me like delicate glass. No one has made me feel like I can’t do anything or that they are scared to have me around. Thanks to you all I can truly live within normalcy, even for just a little while longer.

I also want to congratulate the four members of Memorial University of Newfoundland’s faculty of medicine who have won the Governor General’s Innovation Award. These people are the reason I have a chance to a full and long life. Their groundbreaking research into the disorder I face has saved and will continue to save countless lives. I am so proud of them, they deserve this.

Here is the link to the article:


Cheers to another year, Happy and Healthy!

May your Adventures be Wild and Your Heart Be Strong,

~ Chelsea ~




Life Goes On…

And so it did!

Life went on. I started a new job that I love, specializing in what I was trained for in college.

My friends and family treat me normally. Sometimes the topic comes up, but not so often it’s suffocating. Just enough to feel supported by a network of people that care about me. Thanks guys.

My Defibrillator is heavy on my back sometimes. When I want to just grab my wallet and go somewhere it’s a bit frustrating to remember a life saving device must accompany my journey. Altogether menial complaints.

Not only has life gone on. It hasn’t changed. Which is fantastic! The only thing I have to worry about now is the psychological Olympics. Any fleeting worries and fears that pop up have to be dealt with immediately to prevent any snowball effect. Meditation has always been my #1 friend in hard times. Old faithful keeps me on track.

I’ve been having some palpitations recently that could mean entirely nothing. Now with the knowledge I have… sometimes it doesn’t feel like nothing. Over time I get distracted doing what I love and very quickly it’s like it never happened. Lovely.

My follow up tests are officially complete. MRI, SAECG, and Holtor Monitor all sent to my cardiologist. I’m patiently awaiting the results to be clean as a whistle.

One thing is for certain. I have changed. For the rest of my life I will never be the same, diagnosis or not.

I’ve been waking up with the type of nightmares I’ve never had before. Just an hour after falling asleep I shoot out of bed feeling like a truck slammed me with anxiety. No dreams to match the emotions…just straight feelings. I know why too.

I have great motivation. If I have a goal and clear means to reach it there’s very little that can stop me, but since the news… new gears have been turning in my mind. Gears of complete and utter drive.

I feel like I’ve been told I was born with a ticking time bomb inside me. No one knows the time left, no one knows if it’s even turned on, no one knows what will happen when it goes off. It’s just there…. that much we do know.

I can’t afford to wait.

I can’t afford to be complacent. I can’t afford to sleep in. I can’t afford to slack off. I can’t afford to eat poorly. I can’t afford to weaken my body. I can’t afford to give up. I can’t afford to accept failure. I refuse to allow myself less than my best.

I’m turning 24 this weekend. When I turned 22 I called it my second 21st Birthday because I didn’t like how much I had achieved at that age. Time wasn’t waiting for me to become who I know I’m meant to be and what I’m meant to do.

Now I can’t help but feel I’m much too young, but with less time than I even started with.

6 years, (if I’m lucky), before I get implanted. That’s a long time. Not long enough but, hey, my dreams are big enough. I might as well push the timeline too.

There are a couple of people close to me going through way worse medical scenarios.  I’m grateful for my life. I was given a choice. I know my chances. I choose to live 10x more with this knowledge. Nothing can stop me. Not even TMEM43.

Cheers to 24. A year even more vivacious than 23, I just know it.


May Your Adventures be Wild and Your Heart Be Strong,


~ Chelsea Alice ~




History Meets Statistics

At this point a lot of people may not understand where all of this came from. The sudden test results and family history seemed to sprout out of a garden that never seemed to hang out in my backyard. There was a reason for that.

I only told those closest to me that needed to know. Whether there was an appointment I had to go to instead of an event etc. Even then I hesitated. This disorder is so severe sounding, because it is. The difference between my perspective and others is that I was quite nonplussed about it. I grew up with the possibility. Facts are facts, my Dad is quite alive despite the mountain of medication and frequent surgeries. Comparatively, my situation really isn’t that bad. That is, until I learned I had the gene. Perspective changed pretty quick after that. It was easier to mention when I had the surety of clean clinical test results behind me.

I am only going to show my family history using percentages for confidentiality reasons, but it’s enough to get the point. These calculations are based as far back as 2 familial generations before me only with members that are connected genetically to acquire the gene.

Percent of TMEM43 positive family members



Percent of Members with the Gene based on Gender

Female: 50%

Male: 50%


Percent of Members Implanted with an ICD


Percent of Members who Died directly from the disorder, (this however happened before the ICD was invented. We have had no deaths in our family from this disorder since because of the implantable defibrillators)


Percentage of Members Diagnosed and symptomatic based on age (those who died of it are included and considered as a stat at age of death)

Age 10-20: 14%

Age 20-24: 0%

Age 25-30: 42%

Age 30-34: 14%

Age 35-40: 28%


That’s all for now. The numbers speak for themselves but there is hope! My Mothers genetic contribution could very well dim the effects of TMEM43. I’ve been reassured many times I could live to be 90 and never have a single arrhythmia. I am an individual and that counts! I just have to be prepared for anything and live life as I would before. So long as I don’t plan on running any marathons….

May Your Adventures Be Wild and Your Heart Be Strong,
~ Chelsea Alice ~


Final Answers

“Sweetheart!” Exclaimed Mom over the phone. “Your cardiologist’s secretary called me back, they just had a cancellation and can squeeze you in tomorrow. Can you make it?”

*visual of me slaving over an important project due this week*

“Tomorrow? That’s so fast! Of course! Send me the info.” I enthusiastically respond.

-Hangs Up-

*looks at project*

*exaggeratedly sighs*


I clutched my notebook close to my chest. As if the questions written inside it would protect my heart from its own internal flaws.

“Only 12 questions, that’s not too bad!” I thought to myself as I checklisted all my biggest concerns.

The wait was excruciating. I just wanted to pace the floors and get all the anxious energy out of my body. This was it. All my questions to be answered is right here, right now.

“Hello! Good to see you.” He strolled in the room.

“Hey Doctor! Thank you for seeing me on such short notice. It means a lot.”

“Well, one of my patients ended up in surgery and I had this slot open up. I’ve been telling my administrator B. To fill any openings and she said she knew exactly who she was going to call. I’m glad it worked out.”

My heart grew 2 sizes. Poor B. She was consistently pestered by my calls for over a week and sure enough she gets me in true to promise. In Canadian fashion, I would be grateful for a 2 month wait and that’s if you’re lucky. I got in in less than 2 weeks. I owe B. Some cookies and a heartfelt card.

“It’s nice to meet you, have we met before?” He started.

“Yes, but I was a little girl when we met. Usually when Dad was recovering from surgery.” I responded.

“Yes, okay, and how old are you now?” He says as he checks over my chart.

“I’m 23 now.”

“…and you have the gene.” He mentions.

“Yes.” I didn’t have any other words than that to say. By now I was so tired of explaining my unique circumstances to others it was almost comforting to use one word sentences. For once I could talk to someone who knew more than I did. Let them take the lead and reassure me for a moment. That sounds nice.

“Tell me what you already know.” He asked me. I proceeded to explain what I knew, fancy medical terms and all. I did my research, since I knew how to read anyway. Might as well flaunt it while I get the chance.

“Looks like you’re well informed. Let me explain to you your options for ICD’s, (Implantable Cardioverter Defibrillator), there’s 2 types now which is good for options. The first one…”

He gets right to the good stuff doen’t he? Perfect! I need that. I mentally check off the question about available technology for ICD’s but take pause once I realize, “He went straight to ICD’s, does he want one in me now?”

*heart stops*

But not stopping like Cardiac arrest, I mean physiologically due to emotional response. I’m much more familiar with that kind than the real kind.

“I would recommend the conventional ICD, the accidental firing rate is much lower, between 3 and 5%. And it’s placement is easier when it comes to wires…”

Oh Jesus, Mary and Joseph. (God forgive me). At least, that’s what Nan would say in times like these….

“Since you don’t need the pacemaker, just the defibrillator, the design and leads are very simple, easy to implant and replace so comparatively to your father you’ll have a much easier time….”

I’m 23, I just found out I have the damn gene and I’m asymptomatic. Can I get until I’m 30? Like I asked for?

“If you want it by your ribs instead of the shoulder the wires will be placed subcutaneously…”


“But the issues with that option is that the leads…”

I’m just too young for this…can I take a rain check?

“The incision for that version is about as long as my fingernail which is optimal for cosmetic reasons…”

I mean, I don’t have a receipt for my existence or anything. Will a birth certificate work? Or my total DNA sequence on paper?

“The defibrillator itself is quite small these days, about four fingers wide and half a finger thick…”

Not bad. But not small enough for me, personally.


“The lead has a tiny end that we insert into the heart muscle, when it’s removed for replacement there’s a risk of losing some of the bit of muscle it’s connected to but now that’s quite rare….”


“Every 10 years or so you’ll need a new battery, manufacturers could extend battery life, but by then the technology is so advanced you might as well get a new one….”

*hides away in a corner*

“…so you won’t need that many surgeries in your lifetime….”






“Feel free to do as much research as you need to decide which one will work for you.”



heavy breathing



“Doctor, do you mean for me to decide now and get implanted….right away?” I ask tentatively whilst trying to remain calm.

“No, not at all, we just might as well have this conversation while I’m here and be prepared.”


*tries not to faint*

THANK CHRIST. OH ME JESUS – (proceedes to mentally swear all the blasphemous Newfie jargon possible)

“Oh man, for a bit there I thought a decision was already made.” I sigh with relief.

“No, but I would like to know the history of all the affected women in your family and at what age the disorder manifested so we can make an informed decision when the time comes.” He stated.

“I have an Aunt who knows all of those details. I’ll have to call her and get back to you on that.”

“Sure, that information is very important and will help decide when we implant you. Symptoms or not. You don’t have to worry about that now but there are a lot of factors at play for that decision.”

“Will I have until I’m 30?” I ask hopefully.

“That’s something that can’t be decided until the time comes. So, no promises. But it can happen if you continue to be asymptomatic and your family history looks good.”

“I’ll take it!”

“Your 2015 results are completely normal. It’s time for a top up now though so I’m going to get you an MRI and a Signal Average ECG to double check any changes. If there are any structural abnormalities or concerns in your ECG I’ll call you and we can go from there. In fact can you stay for a bit and get the SAECG done here right now? Let’s save you a trip.”


*internally moans at project deadline*

Luckily, everything I had hoped for was verified by the highest professional available. One who not only knows this disorder, but my family’s history as well. One thing is for sure. With an intense day like that, sometimes all you need is a couple of good memes to help you mentally handle effing scary stuff.


May Your Adventures be Wild and Your Heart be Strong,


~ Chelsea Alice ~



Shopping for an Automated External Defibrillator

Disclaimer: This is not an ad. This is my personal experience and decision that I’m sharing so it may help others in the same decision making process.

“So, it talks me through everything?”

“Yes! Just press the power button and it will talk through every detail like cutting the clothes, opening the pad holder etc.”

“Awesome.” I responded.

Mom and I were at St. John Ambulance, ready to buy the mysterious AED. We had two choices:

1) Phillips Heartstart OnSite Defibrillator



2) ZOLL AED Plus Semi Automatic


“What’s the difference between the two?” I asked.

“Well the ZOLL seems to be in a sturdier casing, and the top comes off and can be used as a head rest for the person. The pads for this one are also connected so it’s easier to decipher which goes where. You can’t really get it wrong.”

I poked at it a bit. Seemed bigger than I’d hoped.

“The Phillips one is smaller and more compact…” she continued.

I’ll take it!

“…it has it’s own case and everything.”

The look of the Phillips was awesome but I didn’t wanna run with it because of cosmetics. It’s supposed to save my life after all.

“The ZOLL says it’s Semi Automatic, does that mean the Philips isn’t fully Automatic?Aren’t they both supposed to be fully automatic anyway?” Mom asked intelligently. I definitely got that gene from her.

“Hmmm they’re both automatic, I’m not sure why it says that.” The lady replied.

My distraught look must have resonated through the hallways because a lovely gentleman walked up and inquired, “Would you like some help figuring it out?”

“Yes!” I exclaimed.

“Okay well, the Philips has scissors included in the kit to cut away the clothes. There’s also room allotted at the top of the case for spare pads and a spare battery. I recommend having spares on you at all times. This power button turns it on and will instruct you exactly how and when you need to do anything, pad application, shock etc. Press the power button again to turn it off. Also, there’s a light that continuously flashes through the case that indicates the battery is good to go and the AED is ready for use. So you can always be sure it will work. Here I’ll show you.”

He proceeded to walk down the hallway and he showed us their wall mounted AED. It was the exact Phillips model just like the above option. If a First Aid training company prefers these in their facilities, I’m pretty sold.

“See the light?” He said.

“That’s so great! Very reassuring.” I answered.

“Best thing of all. Worst case scenario if you use the AED is you waste a set of pads. If the machine doesn’t detect an arrhythmia or tachycardia it won’t shock even if you press the shock button. So you can’t hurt anyone.”

I almost sighed in relief audibly. I would be relying mostly on my friends and family who may not be trained in using these. But knowing it can’t go wrong instantly made me feel a lot better.

“What are you using this for?” He inquired.

“Myself.” I despondently responded.


“Yeah. I just found out I have a gene for a heart condition where the #1 symptom may be sudden death so…”

Damn, this is awkward.

“Oh…okay well. I wasn’t trained on the ZOLL but I know technically they do the same thing. You turn it on it talks you through. It advises you to shock so you press the button to shock and they both talk you through CPR if it’s a flat lining issue. With the Phillips you just press the Information button and it will talk you through all the timing of breaths versus chest compressions.”

Well they both talk, that’s important.

I thanked the gentleman for his help and looked through the comparison chart on the pamphlet they gave me. If I’m gonna buy a lifesaver I gotta get the research right the first time.

“…the Philips not only records the entire event but it records 15 minutes worth of an ECG too! That’s perfect for my doctors. I want this one!” I decide.

“You sure that’s the one you want dear?” Mom asked inquisitively.

“Completely. It’s the perfect size, it has room for spares, it has a battery indicator light and takes an ECG! I want this one.” I shove the box to the lady behind the counter.

As she rings the box through I get a sense of urgency. Like a fleeting sense of security is within sight but not within reach. I breathe and try to stay calm. So close.

Walking out of the building AED in hand I feel another weight slowly lift away from my shoulders. Geez, since I got the news how much have I been bench pressing here?

“None of them have zippers!” I groaned.

Mom and I went straight to Winners to get a gorgeous bag to hold my new AED.

“Ooooh! What about this one!”

Shopping always helps me feel better.

“Too big, the AED is big enough I don’t wanna carry around a luggage bag.”

It was diffult to find one that would fit and also had a proper closure. Why do people want purses that are wide open for all to see? Don’t they drop things or anything?

We decided on a cute purse that had enough room for my AED, wallet and phone and a little backpack that did the very same.

I walked out of the store ready to rock and roll. Clutching the AED like a security blanket. I can do this. I’m safe now. Nothing can stop me.

Damn this blasted thing.

Yesterday I clutched it like a scared child. Today it felt like a reminder of my doom.

I ran my errands with it, feeling it’s weight. Every time I opened it the bright red of the case glared at me with obnoxious exuberance. In 24 hours this thing became the biggest example of my weakness, vulnerability and danger. How on earth am I going to get used to this?

It’s been almost two weeks since I got the AED as I write this. I’ve stuck to my guns in carrying it with me. I still wasn’t sure about it all for a while. I felt detached, stand off-ish  but I never wavered the habit.

Then I went to see my cardiologist, the details of which is for another post. As we walked the halls to the office I noticed something on the wall. Their AED. It was a Phillips. The exact model I had on me. I clutched the straps to my bag and for a moment, I felt it was all meant to be.

“Look! It’s your AED!” Mom exclaimed.

“It is…” I couldn’t help but smile.

A lot of people would think this a small coincidence. I don’t think that state of mind is very fun at all. At this point it’s only been 2 weeks since I got the news and so much has happened in so little time. My whole perspective on life has taken a 180. I’ve had to consider changing my long term plans for my future, career and family life. There’s a giant new list of to do’s now that it may limit some choices I will make.

I’m very lucky. I never wanted to be a professional athlete, I never drank much, not even carbonated beverages, I eat pretty clean. I’ve even wondered perhaps the reason why I’m not showing symptoms is because I’ve always taken care of myself, never vexed my body past it’s physical limit. The sacrifices I’ve had to make aren’t significant. They probably won’t be for some time. I know comparatively to others who face sudden major diagnoses I’ve got it pretty damn good.

That doesn’t stop me from tearing up at the idea of someday meeting my future husband and explaining to him what chances we’re taking in passing this gene to our kids. That every birth I experience I will have to wonder if they won or lost the genetic lotto. Which of my future children are forced to face this frightening reality? That’s not including the medical procedures they will have to witness their mother going through, knowing that they may be next. Technological advances will be amazing by then, but a great risk is always there.

I’ve gained enough resiliency in my life for a lot of reasons. Mostly life experience and a will to not only survive, but thrive. I can honestly say with pure conviction I would not be so resilient if it wasn’t for knowing that deep down everything happens for a reason. Some people call that religion, or spirituality, some others are turned off by those terms now a days. If you’re reading this and that’s the case think of it as a Greater Purpose. It’s not about just me, or you, or any one person. It’s about us, and our experience together.

My Nan used to always say, “God will never give you more than you can handle.”

I was trained in my previous life experiences to now handle, this. Something that was written in my DNA since the moment I was conceived, I face now. After my biggest personal challenges through my teen years that even I never thought I could conquer. I did it anyway. Because I believed in….something bigger and more meaningful than what I felt was challenging me. If I had gotten the news during that time in my life it would have destroyed me. Instead I face it now, with an arsenal of strategies and skills to navigate and overcome it with great victory.

A perfect mix of fate and life decisions. We do have control, of ourselves, our choices, and most importantly our thought process. Some would argue they can’t control emotions but I say this; your thoughts provoke emotions, so choose your thoughts wisely.

I choose to take every small thing and allow it to inspire me. I choose to find a reason to do more, do better. I choose to find ways to overcome my greatest challenges in positive healthy constructive ways and nothing less. I choose this AED to show me that I am right where I’m supposed to be. Even if it’s not what I wanted.

Since that day at the hospital I’ve carried the AED with no notice of it as either a security blanket or a destructive reminder. It’s there if I need it. That’s what matters. It’s a part of my life, I can accept that, and I got a pretty cute purse out of it too!


May Your Adventures be Wild and Your Heart be Strong,


~ Chelsea Alice ~




A New Normal… 

“Mom, is 145 too high of a heart rate?” I only mildly panic…

“That seems high to me. Call Alberta Health Link.”

*Ring Ring*

“Hi, I have a couple of questions…” Insert kind of calm explanation of gene and symptoms here. “Should I be concerned?”

“We recommend you head to emergency immediately, in fact, call 911 for an ambulance. Right now.”

“Are you serious?” I reply in a dead pan tone.

“Yes, please call 911 or get to a hospital ASAP”

“Ummmm… Okay. Thanks for your help. Have a nice day.”

*Hangs up*

No f@&#*ing way I’m getting an ambulance. Probably just nerves anyway…

*Fast forward to Emergency Room*

“Why didn’t you call the ambulance?” the nurse politely asked.

“I only just found out I have the gene. It’s probably just nerves. I didn’t drive though. My roomate brought me. So it’s okay. I just haven’t seen the cardiologist yet so I need to come here to insure none of these things are warning signs, at least until I’m told otherwise.” I reassured.

“What if you dropped dead in the car?” She responded blatantly.


“Listen,” the nurse continued, “there’s nothing worse than pulling a body from a car. The ambulance has all the equipment needed to prevent that. Yes, you get billed, but it’s better than dying.”

“Uh…. Okay…. ” I timidly squeak.

“Good. Now you seem fine. We’ll stick you in the waiting room until we get a bed for you.” Then she walked away.

What the hell was that? Call 911? For a heart rate concern? Should I call everytime I watch The Keepers? Or see a hot guy? Pretty sure mine sky rockets for both of those.

“So it seems your heart rate response is normal. It fluctuates properly with activity so that’s a good sign. It may be a bit high but a lot of people have naturally high heart rates and your EKG came up good. You should be fine.” The doctor reassured me.

“Awesome. Here’s the thing, I haven’t seen my cardiologist yet, I have no idea what the danger zone is. I’m scared like all the time. So what should I be looking for?” I question casually.

“Sinus Rhythm, which is what you had today, is normal and healthy. If your heartrate responds to activity and fluctuates it’s fine. However, if it spikes and will not fluctuate no matter the activity we have a big problem. Also look out for palpitations. You’ll feel them when they happen, this is a very rare disorder so just let me check…” She pulls out her phone and checks the medical archives for ARVC.

I struggle to choose which perspective to go with in this situation.

Option A: Holy Sh#&, she has to research to figure out stuff. I’m so screwed. How do I even.

Option B: Thank God she’s willing to look it up. Otherwise, I might be sent home when I’m not supposed to be. Good thing she’s thorough.

-Beep Beep Beep-

*A wild Alex Trebeck appears*

“What is: Option B?” I answer mentally.

“That is correct! Chelsea – up 400 points today. Pick your next category.” Responds my personal life show host.

“I’ll take emotional explosion for 2000 please Alex.”


“I’m sad Mum.” I state bluntly as we walk to her car to go home from the hospital.

“Of course you are dear.” She says sympathically.

“No I mean like really sad. The heaviness in my chest. It’s familiar, not painful or foreign. It’s sadness. That’s why it’s there.” I fight to keep the ever persistent tears at bay. “I’m so sad Ma, I’m sad because I’m scared.”

“Why don’t you have a good cry dear? You know you need to.” She pleads with me.

My voice cracks with a wet hue of hurt, “I know how much this is breaking you too Mom. I don’t want you to see me upset. I need to cry to someone I know won’t take my tears and have to cry themselves out of that shared pain later. I know I’m gonna be okay. I know that, but to be okay I have to be weak and vulnerable sometimes before I can get strong again.”

“Sweetheart,” Mom sighs, “I cried in the morning, driving to and from work, and before I went to bed for days. I’m all cried out!” She exclaimed like a liberated dove. “You can share your tears with me. I’ve had my turn. Now it’s yours.”

I began to weep, and continued all the way home. Slowly, the heavy feeling in my chest lightened up. I needed to let out my sadness.

“I’m just so scared, and I don’t even know what of anymore.” I balled in the car. No music played in the background during the drive. Just the intermittent gross sniffles and nose blows that inevitably came with eye rainstorms.

Question: How do Actresses cry so neatly?

Conclusion: I call bullsh#&. Or CGI.

“Oh! By the way, as for your plans with… ”

I cut Mom off almost immediately. “Mom, it took me so long to finally do this. I gotta stay focused here because it’s now or never. I won’t be able to cry again for a while.”

“Oh okay I’m sorry we’ll talk about it later…” she murmured.

My only response was a grody noseblow.

Truthfully. The trip to the hospital was good news. Nothing wrong, but important to check, and tests came up normal.

It will still take time to adjust to this drastic change of mind. The panic will subside with time, hopefully sooner rather than later. I feel like I need my life back. Now that I’ve let the water fall, I’m getting one more step closer to this new normal.




May Your Adventures be Wild and Your Heart be Strong,


~ Chelsea Alice ~


First Appointment

Tears welled in my eyes as we drove to the hospital. I sniffled them back and tried to hold my composure.
Sometimes I feel like I grew up in hospitals. My Dad, the carrier of the gene I received, was constantly getting checked, upgraded, opened up, you name it. The smell of antiseptics weren’t frightening at all. They became comforting over time, safe. My naive youthful mind always wondered if I would get the same special attention Dad got. He was priority, immediate medical attention was always given. That was kinda cool in a way. No more 6 hour minimum wait in the emergency room. (To those who are confused about that long of a wait time. I’m Canadian. Yep. It’s great. I like it here.) But at the same time, I always knew that attention came with a price. One that no amount of attention could fix. So I stood back, observed, and took notes. Hoping that some day I’ll never have to face any of these procedures personally, but being prepared wouldn’t hurt.
Now, here I am. Headed to that place with the same exact childhood fear congregating in the deepest part of my stomach.
“This isn’t fair.” I squeaked through stray tears. Mom just reached over and held my hand.
By the time I had entered the office of my genetic counselor I had straightened my back. Professionalism mode activated. *transformer sounds* Tears would have to wait until later. By this point, I still had not fully cried since I got the news. Mom says I’m stubborn. That gene I got from Dad too.
I barely sit down and a slew of questions and concerns race from my lips. Mom and I bounce off each other like tennis balls in our search for answers. My Genetic Counselor is amazing. She’s intelligent, caring, knowledgeable of the rare disorder I face, and best of all, calm.
“Here’s your results for the extensive testing you got 2 years ago. No structural abnormalities at all, perfect EKG, and….” she shows me the record from my 24 hour holster, “to get any concern for symptoms your list of irregular beats, double beats, runs etc. has to exceed 500 each. That’s considered minor. Most with symptoms exceed about 30, 000.”
She continued, “I even had this test done on myself before, and you…”
“…had 1 irregular beat.”
WAT? That’s it? Like, singular?
“Yep. Overly perfect score. I didn’t even get as clean a result as you and I don’t have the gene. I had multiples in each category.”
But actually that was amazing. I felt I had some idea what was going on. Even a bit of pride for my strong, perfect, genetically compromised heart. Irony? Yes.
Deep breath. Slowly, this weight that has been placed on me is easing off my shoulders. One step at a time.
Then Mom stepped in, “We’ve been toying with the idea of getting an AED, but if she’s getting implanted for safety sake, without symptoms, it might be good to wait. Do you have any idea if that’s a decision she may face?”
I can feel the tears slowly gather into the wells of my eyes. Little ‘nopes’ ringing in my head like bells.
“You know this is a possibility? You may be healthy but this is still high risk, they might give you one even if your tests are clear.” Mom said gently, as if I was a frightened fawn.
“I honestly can’t even think of that right now.” I moaned. “It’s just too much too soon. Please God just give me until I’m 30. That’s all I ask. Just short 1 more decade…”
*Present Moment*
“You’ll have to talk with your cardiologist, he can give you a straight answer but in general…..based on the recommendations I received from the researcher in Newfoundland who specializes in your genetic sequence. Women get implanted later than men, since it is less aggressive for females so in your case….”
Breathe…Breathe…Breathe….Oh! Listening – that too.
“…late 20’s early 30’s.”
“Mom remember my wish?” I choked pitifully. “I get until I’m 30. That’s exactly what I asked for. Can you believe it?”
She smiled.
-Redundant Spiritual Statement Warning-
God really does work in mysterious ways. Just like Nan said. But that story is for another time.
“I also asked the counsel (team of cardiologists) if your performance artist profession may be something that could be hindered by treatments or aggravate the condition….” My counsellor mentioned.
She knows me so well already. This is our third meeting ever. What a lovely lady. I said the first part of that sentence aloud then had to stop because the river of relieved and happy tears fell forth when she said, “They said it’s perfectly fine. You can continue with all of those activities with no alterations. Just no competitive or intense indurance sports, it’s known to manifest symptoms”
Well damn. If it’s doctor’s orders….sure! I never sports ever really. I like prancing though. Is that a sport? I’ll keep that one.
“Do you feel better?” My Counsellor asked. I wiped my eyes and sucked in the next emotional wave before it overwhelmed me.
“Yes, so much. I’ve felt so uninformed and ill-equipped all week. This is exactly what I needed. I was scared I wouldn’t have time to warm up to the idea of getting an ICD, (Implantable Cardioverter Defibrillator).”
“Oh! You should tell her your back up plan!” Mom chirped.
I laughed and said, “Mom sent me an article of a girl my age in the US who got diagnosed with ARVC. She worked with a plastic surgeon and got the ICD under her breast muscle to hide it. I thought that was genius! But….my boobs aren’t big enough to hide anything. I’d have one bigger than the other! So….”
Mom finished for me with a chuckle, “We said let’s tuck a boob job in there and get a 2 for 1!”
Ha! Classic Mudder b’y. (Newfie joke).
One week after the results and I still have good news coming out from the woodworks. There’s still hope. Always! Besides, if there isn’t, nothing a good boob joke can’t fix!
May Your Adventures be Wild and Your Heart be Strong,
~ Chelsea Alice ~