Like Alice I followed the white rabbit down the hole. Down, down, down I went into a strange, frightening world, where nothing made sense, and I had no control. Opening doors, meeting strange creatures. Around every corner there was something new, something else that revealed itself to be an imposter, a sinister cheshire cat just waiting to pounce. The topsy turvy, upside down, nature of that world became so unbelievably unbelievable that logic was illogical.
Wonderland is heart failure and heart failure is Wonderland.
Tweedle Dum and Tweedle Dee included.
There are a few things I have not been able to bring myself to write about, to share with the world.
I cannot write about my husband and his experience through all of this. Not yet. I may not ever be able to. It might not even be my story to tell. I don’t know. I just can’t.
I cannot write publicly about my donor and my donor family. I have written them. They received my letter. They know how I feel. They know I am alive. They know I am well. The rest is for them, and them alone.
I cannot write about my VAD nurse. She’s been with me through it all. I even let her hold my heart. Literally. But I am not ready to tell you about her. I will keep her to myself a little longer.
I could not write about my doctor. I have been strangely protective even calling him My Mad Hatter. I have no idea why this is the case, perhaps I just didn’t have the words.
When someone asks you where your safe place is what do you tell them? If someone asks you where you go to relax, what places come to mind?
Perhaps it is a beach where you listen to the waves as you sit on the sun-warmed rocks.
When you are sick – very sick – and in the hospital these places become very difficult to visualize. It’s like they become farther and farther away. Harder to reach, up a higher mountain, deeper in the ocean.
I left something out when I told you about Carrie, and how she called me Jill.
In my terror of that night, I kept asking her to call the Mad Hatter. Asking if she had got a hold of him. If he had called her back.
She told me she called him and left a message.
Until I nearly bled to death, I did not even know that the Mad Hatter was my safe place, my safe person. That in that moment to have him in the room would allow me to let go and trust the team to take care of me.
This is the way it was. At least in my mind.
I had no idea this was the case until I almost died.
That first time.
October 7, 2014
When I arrived at the hospital the day I got the call, they put me in the patient lounge. There we were, me, Vlad and Nick, in a surreal bubble of excitement, anticipation, and anxiety, waiting. I had been stripped and scrubbed, poked and measured, and I sat there trying not think about what was to come. Or, what ‘may’ come as I was the backup for this particular call. I had been hedging my emotions all day, trying to keep myself from getting excited? scared? terrified? about whether or not I was a match for the prospective donor.
I was OK. I told myself. Me and Vlad we were doing just fine.
We had been in the patient lounge for a few hours. Nick and I called my parents, called his parents. Probably called some other people too – I honestly don’t recall. I just remember trying not to think too hard.
It obviously worked since most of my memory of that night is fuzzy.
Nick was sitting in the chair to my right. I was sitting on the edge of the hospital bed barely able to keep myself from throwing up.
Nick saw them first.
My Mad Hatter surrounded by several nurses down at the end of the hall. I heard Nick’s intake of breath, and he said “If they come in here, the heart is yours, if they turn it isn’t.”
I looked up.
There he was, the Mad Hatter. Walking towards the lounge … or walking towards a bend in the hall where the other patient was also waiting.
This was the moment.
The moment before the moment when you know your life is going to change.
I held my breath.
The lounge door opened, and they all walked in, Mad Hatter in the middle.
He looked down at me and a huge smile spread across his face. In that moment everything else around me fell away, I became aware only of his voice. Dr. Toma said:
“The heart is yours.”
June 3, 2016
When you are sick, you are so consumed in your own survival and illness that you don’t realize that there are so many emotionally invested in your survival – almost as much as you are – including your doctors. After spending a weekend at the Canadian Heart Failure Society meeting in Montreal, where I was both a peer and a patient, I was fortunate to witness a room full of the top heart failure specialists in Canada problem solving, dialoging, sharing, working hard to try and save the lives of their patients.
You know what I loved about Mark? He was such a kid inside. After his transplant, when I told him he could eat anything he wanted, you know what he asked for?
A pirate pack.
Dr. Toma said, smiling.
Dr. Toma – Mustafa – was right. That WAS Mark. Although Mustafa had a big grin on his face, I saw a shadow of sadness too.
I cannot imagine what he felt, what the entire team felt, when we all lost Mark (Read about my friend, and heart brother, Mark Wilson here).
In Montreal this weekend, I had a profound sense of realization and complete understanding.
A patients suffering is their doctors suffering.
My suffering was his suffering.
My pain was his to witness.
My joy was his to share.
And if I had died, he would mourn. He would question. He would wonder.
But I didn’t die. I lived.
My team was right. He was right.
As patients we ask that our voices be heard, that they understand, that they see our suffering, that we be treated as whole people.
What I learned this weekend is:
They are listening.
They do understand.
They are also suffering.
Because doctors are people too.