I Robot. I Bionic. I Am.

Jillianne-Chest-XRay
… you just can’t differentiate between a robot and the very best of humans.
― Isaac AsimovI, Robot

I am the very best of me. But I wasn’t always this way.

Lots of people have asked me lately: What is it like?  What’s it like to have a mechanical heart?

I really only have one answer to that question: It is awesome! 

This answer to many of you might seem strange. Strange because it is hard to imagine what it’s like to have a sick heart if you don’t have one. Because… well… Why would anyone have to imagine such a thing? Well, imagine it or no, it happened to me. And it has happened to countless others.

Medically speaking what made me the person I am today is called Idiopathic Cardiomyopathy. Which, literally, translates to unknown cause of heart muscle disease. This is the disease that has made me sick. VERY sick. So sick at times I couldn’t walk. So sick I was unable to lay down to sleep because I could not breathe without feeling like I was drowning. So sick it made me feel so tired that getting out of bed was a massive effort — yet I did. Every day. No matter what. I don’t say these things this way to elicit pity from you but simply to make you aware; to state the facts. Facts that had up until my LVAD surgery in March of this year had become part of my every day life. A life I have every reason to embrace, to celebrate. Here is why.

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Introducing Vlad … (the Impaler)

Ignoring the bad (cough. VERY bad) accent, Keanu Reaves’ character Jonathan Harkar describes his apparent state of mind while visiting Count Dracula in his castle:

Doctor, you must understand, I doubted everything! Including my mind! I was impotent with fear!

As though I am the bad (English?) accented Jonathan Harker speaking to my own benevolent doctor (if anyone on my medical team is reading this I will leave it to you to decide to which of my doctors I am referring. hmmm.) I can draw parallels to this fear when thinking of my own state of mind at several moments while in hospital. The fear is ever-present. It never really leaves. You just have to breathe it in and let it go. Continue reading

Hard to Kill

After spending time reflecting upon the nightmare yet another learning experience on my journey to a new heart, it struck me that so much has happened to me since my initial hospitalization in Victoria that I needed some kind of way of reflecting upon the of the past 6-weeks. I’m not gonna lie, what follows is an account of what happened over my 6 week spa hospital stay and is not for the feint of heart (pun intended) but I promise it will blow your mind. My mind is still blown. I am not the same person. Like Khaleesi, I have risen from the ashes (Ha! I wish I was the Mother of Dragons!) and am definitely hard to kill. :)

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There’s No Crying in Baseball

I’m not going to lie. I’m scared. I have cried… Alot. But I would always let myself cry and if I carried on too long I would then hear Tom Hanks yell at me “There’s no crying in baseball!” For, you see, this is now My game, and in it I have to keep playing – and I can’t cry while playing because the end-game is still a ways off … We are probably in the 8th inning now though. #seriously

All this heart business has been going on so long (almost 9 years!) the fact is I have gotten used to the idea that my heart will forever be broken. Don’t feel sad or sorry for me – I’ve been doing quite well actually. I have achieved all my dreams, I married the love of my life who just so happens to be my best friend, I have a great job that I am passionate about, I am a very happy woman.

But now that my LVAD surgery is imminent (t-minus 5 hours….too bad no heart came in over the weekend) I am nervous and a little scared but surprisingly hopeful and optimistic.

The idea of someone opening my chest is pretty daunting and difficult to wrap my brain around. Perhaps I shouldn’t even try. Focus on the outcome – I will feel better and will be able to get stronger while I wait for transplant.

That’s a tough thing for process oriented people like teachers and professors to do though. Our training has taught us to focus on the process, the learning, that’s needed in order to get to the outcome. Ignoring ones training is hard.

You know what’s been easy though?

Feeling strong.

When I made the decision to allow myself to be scared when I needed to be, to cry when I needed to, to laugh when I could, and to let people in, it suddenly became easier to feel ready. Ready for this next chapter in my adventure … Or to keep up with the baseball analogy – to play the next inning.

So, Thankyou to all who have shared this game with me. You have made it easier to get up to bat and run the bases.

Thankyou for being my coach and kicking my ass out of the dugout so I can keep playing the game.

#WorldSeriesOfHearts

The Importance of Being Earnest

We should treat all trivial things in life very seriously, and all serious things of life with a sincere and studied triviality. — Oscar Wilde

The above quote is from Oscar Wilde’s play The Importance of Being Earnest, A trivial Comedy for Serious People (1895). Wikipedia’s in depth literary analysis (Ahem. #CredibleSourceAlert) tells me that The Importance… is the most trivial of Wilde’s society plays, and the only one that produces “that peculiar exhilaration of the spirit by which we recognize the beautiful and that it is precisely because it is consistently trivial that it is not ugly”. The character Algernon says in Act II, “one has to be serious about something if one is to have any amusement in life”. Continue reading

Listed.

waynes-world1-small

Of all the most exclusive, rarest, lists one hopes to be on: Forbes list of the richest people in the world, one of People Magazine’s most beautiful, David Letterman’s top 10 (OK, let’s face it, the only other list I have been on is the honour roll…barely…but you get the point), the heart transplant list is the LAST place I think any of us can imagine being. You know what else is cool? I am ranked number 1. NUMBER  1! Well, status 1, actually. Continue reading

Duck and Cover

Ever watch those war movies? You know the ones where during the heat of battle one of the soldiers gets shot and the others carry the wounded one out because they swore to never leave a wounded soldier behind? Having a chronic and terminal illness is kinda like being a soldier, shot and left for dead on the battle field. Continue reading

Don’t Worry Dear, Your’re Not Defective

Not long after I was diagnosed I was having a conversation with my parents on the telephone. I don’t remember what we were talking about but what I do remember was my dad saying “Don’t worry dear, you’re not defective”. Now I know he meant this in the most endearing way possible but the funny thing was, I never thought of myself as ‘defective’ until he said that to me. Defective? I’m DEFECTIVE? What does that even mean? Continue reading

Mushroom Jill and the Little Things

So much of my life seems out of my control.

This was one of the things that was hardest to come to terms with. I would wrestle with questions like: How could my body betray me like this? What did I do to deserve this? Why me? Blah blah blah.

Since the beginning of this journey over 8 years ago, my health has been on a series of plateaus and declines, so my being able to do all of the things I want to do with Nick, my friends and family has similarly changed. Since many of these activities are done after 8PM I have to either ‘save up’ my energy or decline outright, otherwise I will promptly turn into a pumpkin after a couple of hours (or as Nick lovingly calls it – I turn into a ‘mushroom’). Don’t feel bad for me – part of me actually enjoys the quiet time - Mushroom Jill has introverted tendencies. It’s a family trait.

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