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?
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.
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.
Last year I participated in developing a video education series for new Heart Failure patients on Vancouver Island. Since I am a patient, I was asked to participate in a group interview. What resulted was an excellent series of videos about what it’s like living with Heart Failure. I am quite proud to have participated and I hope that many of you who are reading this blog will take a few minutes to watch these.
The doctor in the video is also one of my many, awesome, cardiologists looking after me. Since, you know, one is not enough. I am THAT problematic and high maintenance. LOL. Continue reading
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
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
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
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
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.
RIP. Olivia Wise.
“Olivia Wise has Brain Cancer. She came into a recording studio for her first time and recorded the Katy Perry song Roar. She couldn’t walk or stand, she didn’t have her full breath or the energy she used to, and she was managing her new pains and new limitations. While her physical condition was rapidly fading, her spirit remained untouched.” (From the Youtube description)
Feeling overwhelmed this week. Probably because I had rehab, followed by a counseling appointment, followed by an appointment with my Electro-physiologist (EP) all on the same day (Thursday). This amounted to 6 hours in the hospital. So, yah, I guess anyone would be overwhelmed. No big news, really. Just alot of medical-ese all at once…. and I am tired. So very tired. Sometimes I feel
life can just f@ck off already so greatful to be alive. Continue reading