The walls are clean, they have been painted, they have been repaired to hide the damage to that part of me that will remain broken. I wake up everyday and see the evidence of my battles, the angry red scar that runs down the middle of my chest that seems to part me into two halves. Is this is who I now am? Two halves of a whole? The me before and the me after shaping a new identity that is sometimes certain but at other times shattered? I sometimes think that there lies within me another character, another part of myself, that only knows fear and anxiety. Perhaps it is a small monkey (or gorilla?) sitting on my shoulder, ever-present, ever-waiting to push me back into the reality that is my life. Continue reading
Sometimes you have to take a leap of faith first.
— John Kabat-Zinn
You know that moment? That moment you realize that your life is going to change? Has to change? WILL change? One caveat, however, you don’t get to decide when it will happen – it will just happen. This is what it’s like waiting for a transplant. What follows is the story of my moment. Well, the day, actually. The day I got, what us transplantees term, THE CALL. Continue reading
Disclaimer: I was in the midst of writing this post when I got the call for my transplant! Hence the lateness of the post. Also — stay tuned for another post to come!
In a world of absurdities the existential absurdity is most coherent.
– Norman Mailer
Wanderer. Adventurer. Vagabond.
But… definitely NOT a hipster in the contemporary sense of the word.
In his essay “The White Negro: Superficial Reflections on the Hipster“, Norman Mailer characterized hipsters as American existentialists, living a life surrounded by death—annihilated by atomic war or strangled by social conformity—and electing instead to “divorce [themselves] from society, to exist without roots, to set out on that uncharted journey into the rebellious imperatives of the self”. This was, of course written about youth and young adults in the 20s, 30s, and 40s but could equally be true about contemporary, post 9-11 young adults. Continue reading
This is Jillianne. We have given her an LVAD. We usually give LVADs to patients who are unlikely to survive longer than 6 months.
— Nurse speaking to a resident
I will leave you with that thought for a second…..
Unlikely. To. Survive. Longer. Than. Six. Months.
Yep. You heard me.
Why is this happening? Why me? Blah blah blah.
Why not? I say. Why. Not.
How did I handle this news? How would YOU handle this news?
To illustrate, what follows is a story of a typical morning while I was in hospital following my LVAD surgery. Continue reading
… you just can’t differentiate between a robot and the very best of humans.
― Isaac Asimov, I, 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.
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
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.
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 Continue reading
Are we there yet? Are we there yet?
No, but we are on a bit of a vacation.
What insiders call an Inotrope Vacation. Inotropes are a class of medication administered by IV that must be closely monitored along with the heart. Especially by highly trained, super cute and witty male nurses: Batman and Robin.
Hence, why I am currently in hospital.
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