Take Me to the Liver

In those first several days after the offer call, we were living in a heightened version of reality super aware of the possibility of another call interrupting life as we knew it. It's been 40 days since then and I'm no longer anxious every time I see Joey's name (and photoshopped picture of him relaxing in a cup of coffee) pop up on my phone. We've pretty much gone back to life as usual. Kind of.

Freshly immunized and ready to mingle. Er, I mean, nap. 

People ask me, "How is Joey doing?" and I don't know how to answer. I find myself putting a positive spin on everything when I try to respond (and I'm not sure if that's how finding joy is supposed to work or if I'm just saying things to keep the asker from feeling bad). Honestly, I think I do an okay job finding the balance with the reality of the situation. Things aren't great-- a vital organ is slowly failing-- but things could be a lot worse. It's hard for me not to follow that statement up with and they eventually will be, but for now, the truth is Joey is still working. He still likes to engage socially and make espresso on Friday mornings. He does home improvement projects and yardwork and cooks dinner and cleans up after cooking the dinner. He mostly does all the things he would under normal circumstances. 

So the answer I currently give when people ask how Joey is doing is a version of this: He's doing okay. He's always swollen and he's always tired, but he's working and playing video games and gets his bloodwork updated every month and basically we just have to keep waiting. Overall, we're okay though.

Joey very rarely complains about the discomfort he lives in so besides the constantly swollen legs (and more recently his abdomen), I still sometimes forget how bad the situation is. Every once in a while though, he'll sigh and say, "I wish they would call me." 

And I wish they would call too, but I also don't. But really I do. I mean, it's complicated. We have things to look forward to in the coming months and we're doing our best to keep looking forward to those things even though in the back of our minds we can't help but wonder if we'll have to cancel. Again, I find myself trying to strike a different kind of balance involving living life while we wait but taking seriously the situation we are in. I fear being looked at as 'fickle' or 'flakey' but literally all of our plans are tentative. I also fear being seen as 'frivolous' for planning a trip or spending money on furniture and rugs when We ShOUld bE FocuSED oN OthEr mORe ImpORTanT ThIngs! 

Literally no one has made me feel fickle, flakey, or frivolous (yet) so I'm not exactly sure where those fears come from. It's probably a scary look into my own fallen nature on how I'd tend to view others in the same situation. So judgmental. Such a lack of empathy. So embarrassing.

Related to flipping the script and viewing my own situation from the outside, I want to say thank you. When the transplant conversation began back in July, my first reaction was to keep it private. I can't exactly explain why I felt this way considering how transparent Joey and I with essentially everything else in our lives. A lot of it probably boils down to the whole world--and our immediate circles-- very openly having differing opinions on what is safe and important for compromised people. Now that we have shared, I don't regret it (but please stay away from us if you feel the least bit unwell). I completely underestimated the impact of the support we've received. Whether you sent a card or a personal message, left am encouraging comment, offered money for haircuts, sent a gift, or just kept us in your thoughts and prayers (cheesy, but true), we feel it and we thank you. 

Also, Joey told me the original draft of this post was very somber and I responded with something along the lines of "Well, it is too somber? It is accurate, though, right?" In an effort to be my own positive spirit, I'm throwing in this random bit about us dabbling in vinyl. 

When my parents came to visit recently, they brought a record player they thought we might be interested in, mom's collection of 45s to peruse, and the best Elvis song ever recorded. Joey's natural tendency is to improve things so while he immediately thought of ways he'd like to make the record player sound better, he has since let that go (for now) and we have both enjoyed a new way of listening to music while we're puttering around the house. Our newfound interest in records also means we have a fresh goal when thrift shopping on Saturdays. 

The humble beginnings of our record collection.

And now, a word from our spoonie: *during a late night conversation this week* J- Thank you for being so patient and supportive through all this. I don't know that I would be if the situation was reversed. K-Yeah well I'd complain A LOT more than you do.