I started the week out with a good amount of trepidation. It was the very week, a year previous, that I nearly died.
That’s heavy subject matter to be forced to look at in your own life. Even though people die every day, and we are constantly bombarded with death in the news: we tend not to grapple with our own mortality too much in the West. I am grateful to have lived, but that week, something about it, I felt like I wasn’t sure why I fought so hard to hang on those extra days and that the ‘year’ milestone really didn’t feel like much. I thought I would be in a very different place one year after my liver transplant. I did not anticipate so many setbacks, much less liver rejection 8 months in. Then I was told, I’d have at least 4 months to a year to have to recover from the rejection episode. It felt like trauma compounded on trauma, though I didn’t have the language for it then. At the time I just thought about it like this: you get hit with a shot, you get hit with one more, then another. 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. At one point in the course of my recovery from transplant, it felt like I was just constantly going through the revolving door of the procedure bed. The staff knew me so well in the endoscopy suite at Club Cornell that it was like greeting old friends. I always got the ‘It’s so nice to see you again, wish it was under different circumstances, but you know what I mean…’ Or I would be a creep and say: ‘Oh yeah I remember you!’ When they clearly did not remember me. Or they did and were friends, of a sort, who saw me at most vulnerable and intimate moments over the year between my transplant and knew exactly what I’d been through and I didn’t have to explain anything. I had befriended a doctor who always winked at me at the end of any scary or bad news and once I ran into her in the ERCP suite. I tried to catch her attention (sheepishly) so I could say hello and give her a hug and thank her for everything she did for me. She managed to help me get a single room after a 22-hour stay in the ER. A stay 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).
The procedure I went into that week is referred to as a stent exchange, which left me with a slight bit of anxiety because I was to undergo anaesthesia. They put a camera down your throat and manipulate your bile ducts, and when you wake up (high as a kite), you don’t know what the outcome is until they tell come see you in recovery. My trauma at that time was such that I needed a lot of control to feel safe so this particular procedure took me out of my body. The exchange would mean: changing the plastic stents that had been in for 3 months with another pair of plastic stents. In terms of your day-to-day, it means that it’s harder to digest food, there’s a 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 was still far from being well. Obviously, on the plus side, the stents would allow for a better flow of bile 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 episode in April of that year. A stent removal (which is what they ended up doing), was what I was hoping for. So off you go into your sweet anaesthetized sleep and time to play Russian Roulette with your guts. Luckily, the outcome was good. I got what I was hoping for: no more stents, plastic-free and oh-so-me. Apart from my liver, at that time she was almost a part of me, but we still had a few more sessions of couples therapy to get through until she would really truly be mine.
The days following the procedure I had pain and the doctors were afraid I would contract pancreatitis. I vomited a few times, but on the whole, it really wasn’t too bad. Then Monday swings around, which was the 1st of August and only a few days before the anniversary of my transplant. I lost it. Nothing seemed to go right and I had no internal resources to be able to handle it. First, there was a miscommunication about a doctor’s appointment I had scheduled for Monday morning, and I couldn’t get through to the secretary for 40 minutes. 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. I tried to will myself to move from the sofa in the apartment I was staying in, but I just sat there. I blamed it on what the withdrawal from 3 days of pain medication can do to you psychologically and chemically. I blamed it on anaesthesia. I blamed it on the fear of having contracted an infection whilst in hospital (for a short 10 hours). I felt like my time as a patient was never-ending and I had no choice but to keep going.
I didn’t feel well the following Monday, and I couldn’t eat much. The tricky thing was: it didn’t feel like I got the stents out and lickety-split I returned to my former self. The girl whose biggest concern was that she wished she ate less cheese and wondered why she loved chocolate so much and how come croissants aren’t even that good at Pret-a-Manger but I kept eating them as a snack twice a day. I was still Nora on the mend. This version of me still felt like food didn’t sit well most of the time, and so I didn’t feel well, most of the time. I thought I was a good actress, though in retrospect it was clear to everyone around me when I felt sick. I would attempt to ignore it until it got into vomit territory. 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 was bearable, I tried to downplay it. 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 headmistress every morning and singing hymns and getting detention marks if you forgot your velvet beret at home, so not the best gauge of how to conduct oneself in the world. I can’t deny that the week before my anniversary started out badly because I was coming off of an imbalance in my system. But more than that, I had all these flashbacks and nightmares and night sweats and terrifying thoughts. My trauma was manifesting.
That week will always be slightly fraught for me and has been since because it was That Time I Nearly Died and lived to tell the tale. Sure, it was lucky I lived, for a whole host of other reasons. Reasons like 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.
That first anniversary though, which falls yearly on 7th of August, I really didn’t feel like living every day. I didn’t know if it was worth it. Those are feelings I still sometimes feel, though a lot of therapy in the interim has helped me be in a healthy relationship with that feeling rather than feel shame about it. At that time, too, I could clearly see the beauty of time spent on earth and people in community and finding your soul purpose, whatever it may be. For me, it was always both/and.
We live in a fraught time, in a time full of hate and fear: of xenophobia, racism, and massive chasms in society. It feels like it gets worse every day. I wrote myself a vow on that first anniversary that still holds true, almost six years on:
May I shed the fear I feel for myself
May I shed the fear I now carry of the outside world
May I carry on if only to have peace of mind, but also to hopefully ease fear and provide comfort for others.
It’s a good reminder of what has changed and what hasn’t. It’s a good reminder to carry on no matter what because things can and do improve. Some things still hurt exactly the same, and some pains have been alleviated. And on the cycle of living continues, whether you’re a liver patient or not.