Are You Scared?

Yes. I am terrified.

I’ve known for almost as long as I’ve known Derek that he would eventually need a liver transplant. I have also known for quite some time that I would be going through the tests to see if I could be his donor. However, I have spent most of that time fantasizing about Derek’s doctors finding a cure for his disease, or scientists figuring out how to make a robotic liver. I’ve also dreamt of making the world’s most perfect soup and that Derek ingesting it will somehow fix his liver once and for all. My fantasies are brilliant coping mechanisms.

See here’s the thing, Derek and I agreed very early on in our relationship that we would stay together as long as we were having fun. That was in May of 2006. In the past 7+ years there have been some times when our time together has not been, how should I put it, ebullient? Trying to sleep in the ICU while Derek was hooked up to several IV’s was not exactly a moment I look back upon fondly. But that’s a blip on an otherwise pretty spotless record of fun times with my dear, dear husband.

So yes, I am scared, but we are still having fun. We make jokes at the expense of Derek’s disease. We imagine that his immune system is populated with super aggressive–but stupid, very stupid–fighter cells that have convinced themselves that the biliary tract in Derek’s body is the enemy. We mock their stupidity and pity their misguided efforts. Sometimes Derek says something that throws me into a fit of giggles and while I am sitting next to him gasping for air, clutching my stomach because it hurts so good, he starts to laugh too, and we both forget that a vital organ in his body is slowly but surely deteriorating. There are times when I laugh because I’m tired of crying and even more tired of trying not to cry. And there are days when Derek seems perfectly healthy and normal and I imagine that the diagnosis was a mistake and his immune system has decided to reverse course and actually fix his liver instead of destroying it. I have an overactive imagination and for now, it keeps me sane.

I want to be brave, but mostly I am a wuss. I have bad dreams, even when I’m awake. My brain attempts to process every outcome of every scenario in a feeble effort to prepare me for everything and anything that could possibly happen. It is exhausting. It is perhaps the nature of having the most important person in your life on a transplant list. Or maybe I’m just a nervous nelly. One thing is certain, while I may not be as brave as I’d like to be, I am tenacious. If I am the donor, I will do my best to be an exemplary patient and prepare my liver to be a welcome addition to Derek’s abdomen. If I am not the donor, I will be the best care giver I can be for Derek. Both scenarios are daunting, but I am up for the challenge.

From our trip to Acadia this past summer. Almost to the summit of Gorham Mountain.

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