Where Roses Grow

Blake died last weekend. He had a fidgety way about him, a slight bounce in his posture, even when standing in one place. I always imagined it was his unfettered energy that powered the Freedom Driver he wore; of course the reality was the opposite.

He stuck his head in my room the day before I had my own TAH implanted. Five years older than me, his ever-present Redskins ball cap bobbing almost imperceptibly above his short frame. Where Perry was calm and quiet, Blake talked to everyone, his optimism and energy infectious. “You’ll get used to it,” he said, grabbing his canulas, as I would later grab my own out of habit. I believe it’s an unconscious gesture that reassures us the thing stitched into our abdomen, attached to the device in our chests, is still there, still working.

Blake should know. He lived with the TAH twice as long as I did. The waiting list evaded him for a long time because he had liver issues that made him a bad candidate. Once he was listed, he got a heart. But his body rebelled against one of the anti-rejection medications, and he never made it home to his wife and teen-aged twins.

He’s the fifth fellow TAH patient and the fourth friend with a TAH that I’ve lost this year. I’m glad the boys didn’t know him- I don’t know how much more of this stuff they can take.

Monday, I joined a new committee at my transplant center, focused on easing the hospital stay of long term device and pre-transplant patients, like myself earlier this year. I’ve become more involved in the HCMA this week – the patient advocate organization that led me to Boston and guided us through some very tough decisions. I’m about to start interacting with newly diagnosed HCM patients. Both of these things are long overdue, and terrifying.

Brian, a transplant buddy and friend of Blake’s, is also on the new committee. “You know that doing all this means we’re going to get close to more people that we’ll lose,” he said as we were leaving the meeting, both mourning the news of Blake’s passing.

“I don’t have a choice,” I said. “Perry and I had a deal and I’m keeping it. Period.”

I’ve learned this – being chronically sick with heart disease thrusts you into relationships with people who also play knock-and-run at Death’s door. But He’s ancient and wise to that game. He catches people who you foolishly imagined were too quick and clever for him. I recite their names often. Joe. Dottie. Perry. Jamie. John.

Blake.

Death has become a bit of an invisible friend, and He’s no longer an enemy to me. It’s nothing personal, He’s just doing his job. But His constant brooding in the corner is intimidating nonetheless. My doc says I have survivor’s guilt. Maybe? I don’t know what that looks like so I won’t argue. What I do know is that I have to find some way to withstand and absorb even more loss than I already have. I owe it to my donor, to Perry’s sisters and mother (especially), Jamie’s little girls. Jon’s wife and girls, Blake’s wife and kids. And I owe it to my own.

I’m not a courageous person, though people often insist that I am. My fears are many. I suspect that exposing myself to more death and loss will take a measure of courage that I’ve not yet discovered. I hope it’s inside me somewhere, or that I can draw it from my family and friends.

For Blake. Clear skies to you, my friend.

“Empty promises, etched in stone, are scattered by the wind to places I have known, 
All the burning lamps by the window pane, lit for their return, but they never came, 
I lose myself in deep regret, still I hear a voice that I can’t forget. 
It says we will run where roses grow, our feet unbound at last, 
Laugh as morning dawns; the night forever passed, 
See the face of glory, feel the river flow, 
Hear the voice of God and run where roses grow.” 
(Glenn Kaiser/Rez Band)