Cracks in the Veneer

I've been on the heart transplant list for 39 days... and the reality of my situation sometimes sneaks up on me. 

I had a great, if exhausting week. I spent time with a few wonderful friends, had a couple of positive appointments with various doctors, handled an awful lot of administrative paperchase kind of stuff that anyone with a chronic medical situation would immediately recognize, and caught up on "American Idol." (Side note: Seriously, they're asking an awful lot of us when they do multiple 2-hour shows in one week. Also, I had no idea who some of those "stars" were that that the contestants were dueting with. Banners? Bebe Rexha? Cam? These names sound made up. I think we're all being hoodwinked.)

So last night after this nice week and a tasty dinner, Derek and I were doing a little Friday night binge-watching. We have a big TV and a huge, sort of uncomfortable L-shaped couch in our living room. There are six cushions and an arm rest at each end of the "L" and the most comfortable sitting spots are in the cracks between the cushions at the arm rests. So in deference to our lower backs and advanced age we typically end up sitting as far apart from each other as humanly possible while being on the same couch. If there is anything that has come between us in our first 3 months of marriage, it's not my traitorous heart-- it's this damn couch.

Anyhoo, in the show we were watching a man was stabbed multiple times in the stomach and I asked Derek if, in real life, there would be more blood. To be perfectly honest, I don't know a lot about anatomy and it is literally what Derek got his graduate degree in, so these kinds of conversations happen all the time. I ask him what likely sounds like a really stupid question, he gets very graphic while explaining his answer and because I'm very squeamish, I do a lot of "eeewwwwing" and shouting of things like "GROSS!" and "STOP!" in reply.

He wasn't sure what I was asking so I explained that to me it seems like there is a lot of blood in your guts and if someone stabbed you in them, there would blood gushing out (in the show, the man's shirt had some damp stains, but it wasn't totally gruesome). I further told him I didn't understand how our organs stay in place-- are they just suspended in blood in there? Are they anchored to something? Why don't they move around the inside of our chests and abdomens?

So he patiently started to explain that when you cut into a body, it's like everything is wrapped in Saran Wrap™. And then he made this slicing motion down his abdomen and started to explain what happens when you are cut open.

Suddenly, I couldn't get any air. I could feel my heart racing. I asked him stop. I said "I can't hear this right now."

Like the patient scientist he is, he explained (as he has numerous times) that there is no reason to be afraid of anatomy.

We stared at each other across what seemed a vast expanse of couch and I said "There is a reason to be afraid when it's YOURS."

Because I'm me, he honestly wasn't sure if I was kidding until I started crying. I said softly "I'm not messing with you. I'm scared." 

By now I was sort of trying to take in big gulps of air. I felt as though I couldn't catch my breath, I could feel my heart pounding in my chest-- fast and loud-- and it's never loud. Because while he spoke, all I could imagine was lying on an operating table, sliced open from the hollow at the bottom of my throat to my navel, all the parts of me that have never seen daylight vulnerable and exposed to a room full of strangers. And then I imagined Kevin cutting out my heart. MY HEART. Tears started running down my cheeks and I repeated "I'm scared."

He jumped up, came over and sat down next to me and asked what I was afraid of. He had no idea what was happening in my head. How could he?

So I told him the world's worst-kept secret, the thing that I am certain everyone knows but most people don't give much thought to and that I rarely voice, even to Derek. "I don't want to do this."

I asked him to give me his hand, and I placed it on my chest. I asked "Do you feel that?" He nodded. 

With his hand over my heart and our eyes locked, I said. "It's mine."

I honestly don't think until then he really had any idea what I was talking about or why I was suddenly so upset, but at that moment it became clear. He held my gaze and said "Yes, but it doesn't work. We're going to get you a new one."

"But this is the one I came with. I want this one."

He put his arms around me and pulled me close. I whispered in his ear "I don't want to do this."

And the man I love with all that I am said, "I know. But you need to do it for me."

I knew he was right. I want to stay alive and in large part, I want to stay alive so that we have more time together. I told Derek about my cardiomyopathy on our second date 7 years ago and as an anatomy nerd, he knew maybe better than I did that this day was going to come. He loved me anyway. And 3 months ago, knowing that this is what we'd be facing, he married me. We said vows that I wrote and that mean everything to me:

“I Derek/Andrea, take you, Andrea/Derek, to be my wife/husband, to have and to hold from this day forward. 

I promise to be faithful and supportive and to always make our love and happiness my priority. I will be yours in plenty and in want, in sickness and in health, in joy and in sorrow, in dogs and in cats, in failure and triumph. I will dream with you, celebrate with you and walk beside you through whatever our lives may bring. You are my person—my love and my life, today and always. 

This is my sacred vow to you, my equal in all things.”

If I die, all of this ends for me-- but it doesn't for him. Imagining Derek returning to our home in Colorado after my death and living on that mountain and in that house alone and without me is something that haunts me. 

I asked again if he could feel my heart hammering in my chest, but he couldn't. I get it, my blood pressure is really low and it's difficult even for doctors and nurses to feel my pulse (in fact, sometimes I suspect that new ones just wing the number). But for some reason I wanted him so badly to feel it beating and it was strangely comforting for me to feel it.

This heart, you guys, it's the one I came with, my standard and original equipment. Like most people, feeling a total stranger's heart beat in my chest isn't something I've ever spent much time considering. And it's unimaginable still, despite the fact that I've signed up to actually do it. This difficulty in visualizing or imagining it makes it incredibly difficult for me to articulate my feelings. And while it is very sweet and flattering to hear my friends and family speak of how strong and brave and resilient I am, and despite the fact that I don't really talk about this publicly, I am fucking overwhelmed by how unfair all of this is. And I don't feel strong, brave or resilient. I feel like I have no choice. If I want to live, I have no choice. And that pisses me off.

Which is exactly what I said to Derek and because it's the truth, he told me "Yes, it's the only solution to the problem."

I looked up at him and replied "But it will only create different problems."

And that's not fair either.