What can I say? It has been a while. Perhaps too long. Perhaps just long enough. Or even too soon. I don’t really know. I would love to tell you that I have been happy, and I have been – but it’s complicated. I would love to tell you that all is well with our heart, and it is – but it’s complicated.
I have been having chest pain.
Don’t worry. It’s not the 9-1-1 like chest pain but it came close a couple of times. My arteries are clear. My ECG is normal (for me – yes I need to qualify). We have ruled out that much at least.
By many accounts, I shouldn’t feel it; my new heart. But I do. Our heart has grown accustomed to its new home. Nerves have started to grow. My body is clearly accepting this heart and is communicating as such to my brain. Apparently, my brain is listening (shock!) and telling the rest of my body when to freak out.
This is an amazing thing. So at the same time the pain comes, I freak out with joy, fear, anxiety, and awe.
I am being monitored. I have nitro. I had tests. Am waiting for more tests. I have my team. They got this.
But, the question is.
Sometimes, several times, I wake at night, my mouth is dry, my heart is pounding, I am in a sense of panic, of dread. A scream lodges itself in the back of my throat. Horror is on the tip of my mind. Something is after me, something is there.
I shouldn’t be here. I shouldn’t be alive.
What wakes me up is a pressure that starts in the middle of my chest. Building – I feel tension in my jaw, my neck, a lump forms in my throat. A burning beginning in my left shoulder and at the same time in the middle of my chest. Building – My left arm begins to ache, then burn; radiating right down to my fingers.
Oh. My. God.
Rest. Rinse. Repeat.
My dreams come in clusters. Many are usually around a theme that I am alone or abandoned. That someone has left me to face the reality of this world on my own. My husband has left me. My doctors have left me. My nurses have left me. That everyone has left me. You get it. You left me too.
Sometimes, the only constructive thing that seems to help the anxiety, the nightmare-inducing anxiety, is walking. I especially enjoy walking downtown where there are lots of people. But not too many people. I walk, sometimes for hours, until I am tired then I find a coffee shop. Sometimes I write. Sometimes I just sit with my latte and watch people. I often wonder what their stories are.
I wonder if they have nightmares. I wonder if they have stories like mine.
This is so lonely. I am so alone in this crowded coffee shop. I am so alone at work. There is nowhere that I don’t take the loneliness with me. Even into my subconscious.
Is this a dream? No. This is real. I am feeling this. I am living this. This is happening. IT happened. ALL OF IT.
The world is slightly off its axis. The music is just off key.
Most days I don’t even know how I am supposed to understand all of this. How can I walk the line between myself, the heart inside me that still lives, and my own that is lost? I find myself questioning whether it is me or our heart that is struggling? Should I even say ‘our’ heart? I find that I often say that I am two people standing in front of you and I know, psychologically, that is a dangerous thing to say. But it is as close to the truth that I can express. This IS reality.
Am I developing as a complete person or is there a part of me that is always going to remain separate? That part of me that is always someone else? A part of me that is dead.
Is this the trauma?
Is this another personality?
What IS this?
My brain some days doesn’t even know what to think, how to think, what words to use, and what to say.
I have great fear. Every day that I wake up I feel this fear, live this fear.
I have had two friends die from transplant-related complications. One from rejection and one from cancer. One was two years post-transplant, the other one four. That puts me square in-between them. The panic is never far away. The terror of a cold that I currently have turned into something far worse. An infection that could spread like wildfire through my body. All of these things I have great anxiety over.
And they are easily triggered.
So when I walk into a room full of people, someone sneezes, another one coughs.
An uneasy feeling grows inside me that I cannot shake. My insides begin vibrating. I am sitting still, but I swear I can feel myself moving uncontrollably. Butterflies in my stomach. Arms and legs tingling. Mind racing. I want to grab my head and scream at the same time. Intestines twisting. Nausea builds. This lasts for hours.
Being around these people threatens my life.
This isn’t even rational! Chill out, Jill. You are fine. My mind says in the voice of my many doctors in my head.
For weeks, perhaps months, following my transplant Nick would tell me that my eyes were open so wide I had the ‘thousand-yard stare’. A phrase used to describe soldiers returning from war after WWII. I had no affect – no emotion in my face. Nick could never tell what I was thinking, he didn’t recognize the person in front of him. I think it scared him. It scared me. It scares me still. Because all I can do is feel, but I don’t have the words to express it.
Sometimes my face turns to stone even now. Especially lately, with the pain.
I have been told I have Post Traumatic Stress Disorder by a few of the mental health professionals I have seen; some of whom I still see regularly. Yes. This is true. Along with the impressive, and ever-growing, list of cardiologists I collect, I am also amassing a list of psychologists, psychiatrists, social workers and counsellors.
Because, in addition to a new heart, I have been given another gift.
I have anxiety.
I have depression.
I have PTSD.
I use the word GIFT here intentionally. Because without it I would not be able to write this down. Without it, I would not have the awareness to be able to connect and learn to understand my new physical existence along with my mental one. They have intertwined after all. You know – the mind-body connection? No? Ask Buddha, it’s kind of his thing.
I often find myself in a paradox.
I live in joy and pain.
I live with anxiety and purpose.
It is often cathartic and I am happy about it.
Because it is the incongruity of all this that has left me questioning what it really means to be what I am. WHO I am: An academic. A patient. A survivor. A wife. A woman. A recipient. A caretaker of the heart of another that gives me life.
But I cannot say that I am just this. I am all of these things. Yet I know that I am more. So much more.
More of what? At this point I am not sure – but I am figuring it out.
What are my research questions, you ask? (I know, dear reader, you likely did not ask this, but I did, because NERD).
What parts of my identity do I still need to discover?
What’s the meaning of MY life?
How do I make it so?
I intend on making sure I discover how to make my life, my career, and my time meaningful by spending mindful time with those I love and by doing work that has an impact.
I am also a scientist after all.
A scientist with a mind of my own and the heart of another.
February 6, 2017 @ 12:04 pm
Wow! Jillianne! There’s a lot of anxiety and fear here. And totally understandable. I think you are doing a good thing by sharing this. It’s too big to keep to yourself. I know you are grateful for the life you now have but like you said, there is another “gift” that comes with it. I pray for some kind of peace for you, without fear. Love you, kiddo.
February 10, 2017 @ 3:18 pm
Thank you for writing this, for putting these thoughts and feelings into words.
February 10, 2017 @ 7:34 pm
I love that paradox you describe here: joy and pain, anxiety and purpose…. It seems surreal but I suspect it’s far more common than we might expect. Once again you have described it all in such a compelling fashion.I wish you calm and dreamless sleep for a while…
February 17, 2017 @ 10:43 am
Thanks, Carolyn. As always your support means a lot! Fact – I just re-read your post about MVD. Although I am pretty sure this isn’t what I have, it’s likely a coronary vasospasm – pain management is quite possibly part of my new regimen. Thankfully nitro patches at night, calcium channel blockers and as needed nitro spray are now my new friends and seem to be helping. This new series of events has indeed been trying, but I am feeling better with it all now. Thanks, Heart Sister! <3
Your favourite nurse!!!! Ha ha ok maybe second fav next to Jen
February 16, 2017 @ 10:15 pm
You are my hero Ms Code!!!! I am so blessed to know you and thank you for this post.
February 17, 2017 @ 10:45 am
How mysterious. I wonder which favourite nurse this is? <3 I write these for you as much as anyone else, including myself. I am hoping I can have the courage to make them more frequent.
February 24, 2017 @ 9:34 pm
Hee hee, three guesses first two don’t count. I love reading them
heart failure to HARVARD – I Am. Still. ALIVE.
August 17, 2019 @ 10:33 am
[…] A Mind of My Own and the Heart of Another […]
January 29, 2021 @ 4:19 am
Hi Jillianne, thanks so much for sharing this story. I imagine so many people can relate to it and find solace in reading it.