Sometimes, when reading a particularly telling memoir, I wonder how the writer felt about sharing stories of the dark sides of people in their lives. Not only that, how did they live with the possible wrath of relatives and the enmity of friends whose secrets had been exposed?
I can't do that. I am never completely candid here. I am aware that by putting my words, my thoughts, my feelings into the world in this way, here for anyone and everyone to peruse, people could get hurt if I didn't censure myself. And hurting anyone is never my intention.
Meanwhile here, on this blog, is the most open and honest I am. I don't talk about what I'm going through in the real world. Perhaps, since this donor journey started, I've had 3 or 4 heartfelt conversations about what I'm grappling with deep inside. I can talk about dates and scheduling and testing and the mechanics of it all, but not how I feel.
But, today, I'm going candid. Or at least more candid than usual as I'm feeling more and more like this transplant life and my regular life are on course for a head to head collision. I'm tied to a train track with steam engines approaching from opposite directions and there's no white knight (I suppose a sheriff with a white hat works better for this analogy) to save me from impending doom.
If my brother's tests come back ok (which, as always, I'm hoping with all my heart that they do), the surgery won't be scheduled until May. But I have things in May that I can't miss. A school play. An awards ceremony at the Met. A double digit birthday. Events and celebrations in my family that are once in a lifetime moments.
Meanwhile, the prospect of someone's improved health is in my hands. Well, not really. It's not like I'm performing the surgery. But, it's my kidney that hopes are being pinned on.
How do I tell everyone involved in this process they all have to wait because I have other commitments? How can I live with myself, knowing my priorities are jeopardizing someone's health? But how can I go into surgery, if that's in the cards, not knowing if I'll be able to heal in time to make it to these things that are so important to my family?
How can I possibly put myself first, when staring down such enormous consequences for other people on all sides?
Last night someone accused me of being spineless. Spineless for not whipping out a calendar and making sure everyone on the transplant team took my needs into consideration. Spineless for letting myself be treated like a vessel, not a person. Spineless for not feeling that as a donor I have every right to open my mouth and shake things up.
Here's the deal for everyone who's judging me, condemning me, critiquing me: unless you're in my shoes, you have no idea what I'm going through. To know that a piece of my body could change someone's life, someone I've watched suffer for far too long. To have every fucking step of this process in other people's hands. To have to deal with miscommunication, ineptitude, mismanagement. To be afraid to open my mouth and complain, lest people in charge deem me too unstable to handle this. To juggle my own fears of surgery and what ifs. To still have to function in day to day life through this extra layer that's now a part of me. To hold on to my sanity in the moments I feel it slipping away. To not be speaking to one of my parents at one of the most stressful times in my life. To be as strong as possible for my own family who have their own issues with all of this.
To wait. And wait. And wait.
There is no handbook for this. No rules. No guidelines. I've never done this before and I'm doing the best I can under circumstances unlike anything I've ever experienced.
I'm hoping no one's been upset by reading this. But, right now, I need to put me first.