Deciding to Decide

(This is a warning of sorts to say there will often be times when I repeat a theme or a thought because I am trying to come at it from another angle. I not going to bother to look at a potentially similar previous post so I don’t get suckered into saying the same thing. Because while I am interested in others reading the stuff I put here, it’s not the primary motivation, at least not yet.)

When I first met my husband I volunteered to save his life. But I didn’t really see it that way. He told me he would one day need a liver transplant, and I told him I wasn’t using all of mine and I’d be happy to share. Because I was happy to share, and it seemed practical, but that offer was not real. It wasn’t genuine. I didn’t know what giving up part of my liver would be like, I didn’t know what the recovery would entail. I could not envision a future in which I would be wheeled into surgery. But I offered and he sort of shrugged it off.

Every time I took him to the hospital for a check up I asked about living donation and I asked if I could be tested now instead of later, if I could get the ball rolling so when he needed the transplant I’d be ready to go at a moments notice. They said no, that’s not how it works, and I slumped back in my chair, still not understanding what it was I was offering to do.

In the spring of 2013, when his annual checkup discovered a spot on his liver, a spot that might be cancer but also might have been scar tissue, they decided to have him tested for transplant as a precaution. It was two full days of medical and psychological evaluations and at one point we met with the head of transplantation and I told her I wanted to be his donor and she had me stand next to Derek and lift up the bottom of my shirt to reveal my smooth stomach; transplant surgeons want a clean canvas to work with and she wanted to make sure no one else had cut into me. And at the end of it they decided he wasn’t sick enough for transplant and a woosh of air escaped from my lungs.

I wanted to be Derek’s donor because I wanted to help. I wanted him to not be sick anymore and I wanted him to have his life back. I thought I was the best person for the job. And then my anxiety kicked in and the little nasty voice inside my head told me if I was his donor, maybe he would love me forever, and if I wasn’t his donor, he’d have an excuse to leave. Self-loathing and anxiety work together like basil and corn, at first you don’t think it’s going to work, but then you get a little taste and you can’t imagine not having them together. At least that’s how it works for me.

And that’s what it’s about, right? A complicated decision made even more complicated by a brain that burrows deep to find all kinds of reasons for a person to say yes or no or maybe. I wondered to myself if my motives were pure, if I was being truly altruistic in offering up a part of a vital organ to give to the person I’d publicly declared my love for. I wasn’t sure. I really wasn’t and so when they said he wasn’t ready for a transplant I packed up all those conflicted feelings in a tidy little box and stashed it at the back of the cluttered closet inside my brain that held all the mysteries of life I wasn’t ready to face.

Six months later, Derek was in the bathroom of our house, throwing up blood in a toilet and I was walking down the hallway to see why he was saying my name so sharply. He wasn’t yelling, but there was an urgency in how he said my name that night. An urgency that made my legs turn to gelatinous goo and for some unknown reason caused my bladder switch to get stuck in the empty position. I peed a lot that night, first in the emergency room bathroom, later when he was in the ICU. We’d visit his transplant team a week later to hear the words: “You’re listed.”

My body involuntarily started leaking tears and Derek’s doctor looked at me confused, “This is a good thing. A transplant means we can save him.” In my mind all I heard was a transplant means we’re going to cut you open, I was not ready to think about what was about to happen to Derek, I could only think it meant I needed to do something big and scary. I hadn’t been tested yet, I would need to pass a lot of tests in order to be his donor, but in that moment I finally realized what I’d signed up for.

To be clear, I was very scared, but not of dying, of failing. It would be too much of a tangent to get into how fear of failure has been a motivating factor for most of my major life choices, but let’s just say, this fear and this choice felt the most profound. To put it in hyperbolic terms that are still 100% true, I have never been more afraid of failing then I was when I realized I had the chance to be Derek’s donor.

To counterbalance the fear I waged a ground campaign whereby I made it clear to everyone that knew me that I was absolutely going to be Derek’s donor, there was no question about that, and that I would be the best possible donor. It worked. No one tried to stop me. That’s not entirely true, the medical team assigned to my care, the people in charge of evaluating me to see if I was mentally and physically able to be Derek’s donor did everything they could to talk me out of the decision. They told me everything that could and would happen to me and Derek. And I listened carefully, my eyes clear, my heart full, my stomach roiling and I agreed and signed papers and passed every single one of those tests.

When the nurse told me I passed I was thrilled. I felt like I’d won a prize. But neither Derek nor I wanted to pick a date for the surgery. We kept finding new reasons to put it off. Me because I was nervous about failing, Derek because he felt fine and didn’t see what all the fuss was about and so we hemmed and hawed and asked the doctors what they thought and they all said the same thing: You have to decide.

During the planning phase, before we’d picked a date, the nurse called me one night to go over some things and she told me I wasn’t ready and I was shocked. Would this be my failure? Would I just never be ready? I got off the phone and called a friend and sobbed as I told her I wanted to be ready but I wasn’t and she sat in the closet of her yoga studio and asked me what was wrong and I told her it was weird that no one I loved was trying to talk me out of this decision. I’d done such a good job convincing everyone else my decision was solid and final, that no one, not my mother, my sister, my friends, Derek, tried to talk me out of it. And I desperately wanted someone to try.

But it’s complicated, remember? That wasn’t the only reason I wasn’t ready. I’m a visual person, I need to visualize what’s going to happen before it happens so I can do the thing without freaking out. I do not like surprises. I was having a hard time imagining the basics of what going through a major surgery would be like. What would the room look like, how would I feel before and after, how many tubes would be put into me, what would the drugs make me feel like, would Derek and I have separate rooms, could I have as much of that delicious pellet/nugget/Sonic ice as I wanted? But also what would life be like after surgery? Would I be able to cook dinner? Would I be able to take care of Derek and myself and if I couldn’t who could I trust to take care of us? Of me, of him?

The crying stopped and the conversation took on a practical approach, I would ask the nurse for a tour of the hospital so I could see all the places before the surgery happened, I would talk to a woman who also donated part of her liver to her husband, I would make a calendar and let people sign up to help (this never happened) and get a board that I could put a list of tasks I need help with so when people came to visit they wouldn’t have to ask what I needed and I wouldn’t have to tell them.

Two days later I had a solid plan in place and I called the nurse back and explained in detail what I hoped to do and she said I was ready and we picked a date and the wheels started churning. My brain was now freed up to work on the other part of the struggle: failure. And it did what brains do best, it folded up the fear of failure in a tight little triangle like those notes I used to pass to my friends in school and it flicked it to the back of my brain where it would slowly unfold itself over time, growing larger and more difficult to ignore. Eventually it would cover all parts of my thoughts, draping every moment with tangible fear, long after the crisis had passed.

 

 

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