I started this week out with a good amount of trepidation. This was the very week, one year ago today, that I nearly died. That’s heavy shit. People die everyday. We are constantly bombarded in the news and media about peoples’ lives that are taken in a moment. I am grateful to have lived, but this week, something about it, I felt like I wasn’t sure why I fought so hard to hang on those extra days and that this ‘year’ milestone really does not feel like much. I thought I would be in a VERY different place at one year. I did not anticipate so many setbacks, much less rejection, much less another four months to who knows how long amount of recovery. How could you? You get hit with a shot, you get hit with one more, and then another and then you keep getting up, or you try to.
The previous week, I went into the hospital for a procedure. It’s called an ERCP and I have had a LOT of them. The staff know me so well in the endoscopy suite at Club Cornell that it’s like greeting old friends. I always get the 'It's so nice to see you again, wish it was under different circumstances, but you know what I mean...' Or it’s me being a creep and saying ‘Oh yeah I remember you!' And they clearly do not remember me. Or they do and they are friends, of a sort, who in fact have seen me at most vulnerable and intimate moments in the past year and know exactly what I've been through and I don't have to explain anything. Or then there's the trying to catch kind winky doctor’s eye so I could say hello and give her a hug and thank her for everything she did for me last year (like getting me a single room after a 22 hour stay in the ER, replete with disgruntled patients, drunks and tired staff and all the other fun things one experiences in an ER). I didn't succeed, she was very busy and I was very much hooked up to an IV (hard to stalk people with IV attached FYI).
They refer to it as a stent exchange, which left me with a slight bit of anxiety because I go under anesthesia and they put a camera down my throat and manipulate my bile ducts, and when I wake up (high as a kite), I don’t know what the outcome is until they tell me. The exchange would mean: changing the plastic stents that had been in for 3 months with another pair of plastic stents. On a day-to-day level it means: harder to digest food, higher risk of infection in the actual stents (been there, done that, got the t-shirt – not interested in two t-shirts thank you very much) and a general sense psychologically, at least, that I’m still far from being well. Obviously, on the plus side, the stents allow for a better flow of bile through to my liver and intestines and prevent any blockages from occurring, which is what my doctors were afraid of and why they were put in in the first place following my rejection in April. A stent removal (which is what they ended up doing), was what I was hoping for. So off you go into your sweet anesthetized sleep and time to play Russian Roulette with your guts (this is where using the word literally would make grammatical sense, I'm literally crapshooting my guts). Luckily, the outcome was great! I got what I was hoping for, no more stents, plastic free and oh so me (apart from my liver, she’s almost a part of me, but we still have a few more sessions of couples therapy to get through until she’s really truly mine).
The following days I had pain, the doctors were afraid of me potentially contracting pancreatitis, I vomited a few times, but on the whole it really wasn’t too bad. Then Monday swings round, the 1st of August and I just lose it. First there was a cock-up with a doctor's appointment I had scheduled for Monday morning, and I couldn't get through to the secretary for 40 minutes and it was not a fun way to start my week. Once that all went awry, I couldn't find the wherewithal to start my day or make a plan (what plan would I make?) or do anything. I was essentially catatonic. You can blame it on the withdrawal of what three days of pain medication can do to you psychologically and chemically (of course, part to blame). You can blame it on anesthesia, on fear of having contracted an infection whilst in hospital for those 10 hours, on feeling like the never-ending patient and just having to keep. On. Going.
I didn’t feel well on Monday, and I couldn’t eat much, the tricky thing was: it wasn’t like I got the stents out and lickety split I’m sprightly Nora circa June 2015, wishing I just loved to eat LESS cheese and why did I love chocolate so much and how come croissants aren’t even that good at Pret-a-Manger but I keep eating them as a snack twice a day. I'm still Nora on the mend, and I still don’t feel like food sits well with me most of the time, and so I don’t feel well, most of the time. Luckily I am a good actress and I can mask it unless it gets really bad. Read: vomit territory bad (I think? Ask my friends). I also can’t think of anything more boring than someone constantly going on about how they feel sick, and as you can see: I already do enough of that in general, so if it’s bearable, it’s bearable. If the all-girls school I went to as a child in London taught me anything, it was not to moan when unnecessary…or moan ever (upon further reflection they had truly antiquated traditions like curtsying to the deputy head mistress every morning and singing hymns and getting detention marks if you forgot your velvet beret at home). So yes, all the chemical stuff is true, I can’t deny that Monday started out badly because I was coming off of an imbalance in my system. I can at least be honest with myself about that.
But more than that, I was starting to have all these flashbacks and nightmares and night sweats and terrifying thoughts. I also can’t deny that this week will always be slightly fraught for me, because it was That One Time I Nearly Died and lived to tell the tale. And luckily lived, for a whole host of other reasons: not least of which, having an abundance of family, friends, doctors, nurses, hospital janitors, strangers on the internet, strangers on the street and little angels everywhere who had my back and sent me love from day dot. No questions asked. So now I’m here on the 6th of August, the 1 year birthday of my new liver in my old body, living my new life. I don’t feel like living everyday. I don’t know if it’s worth it. Those are feelings I feel and then I swing in the other direction and I know the beauty of time spent on earth and people in community and finding your soul purpose, whatever it may be. We’re living in a fraught time, in a time full of hate and otherness and fear: of xenophobia, racism, and massive chasms in society. It feels like it gets worse everyday. May I shed the fear I feel for myself and any fear I now carry of the outside world and may I carry on if only to have peace of mind, but also to hopefully ease fear and provide comfort for others. But not before I tell you about the time I Completely Freaked Out And Had Multiple Nervous Breakdowns in the week preceding this anniversary (or #transplantversary, as they say in the transplant community). We are going to call it a birthday from now on, I think it’s much more appropriate. Standby for part 2 of me acting insane all week (never a dull moment).