Feelin’ Alright, Not Feelin’ Too Good Myself
It was a huge victory for me, getting out of hospital this last spin round. All the incredible messages of love and prayers and the ‘feel betters’ and the ‘speedy recovery’ and the positive energy coming my way helped me to stay positive, which I succeeded at sometimes, and sometimes not. My friend Claire came and stayed with me in hospital, on a side bed, 6 months pregnant, 2 kids at home in Australia and held my hand and cried with me. Tara came right after I got out for a few days and did the same. All my people were by my side either physically or virtually or spiritually, again, in a second, without question. Their generosity of time, love, spirit, food, flowers and the material unfaltering and still as astonishing as the first time. I was there a total of 35 days. I count those 5 extra days because when you’re in hospital minutes can feel like hours, hours can feel like days — you’re fully and completely institutionalized, cut off from society, and you really feel the weight of every day.
I was finally discharged on the 11th of May, the day after I last posted. I felt buoyed and excited and full of promise, and truly elated and as if I had conquered the unconquerable, with a lot of help (pharmaceutical, medical, spiritual, the friend and family plan etc.). Like a recent university graduate, before they comprehend the reality of what it actually means to be a graduate: the mountain of student debt that lays before them like an expanse of unending open road, the reality of ‘making it’ in the ‘real world’ and the soul sucking job hunt and the lack of anyone telling you what to do or how to do it. You took that Film Theory class and waxed lyrical about Truffaut for 2 hours every Wednesday? Yeah no, that did not prepare you for how to do your taxes, better luck next time buddy. Unlike a recent university graduate, I knew that things wouldn’t get better immediately, I could be realistic about that not only because that’s what my doctors have repeatedly told me, but also because this ain’t my first rodeo. I got home and immediately felt extremely overwhelmed and crashed for 3 and a half hours, that all too familiar feeling of the sustained sleep deprivation of hospital setting in once you’re back in your own bed. But I honestly didn’t know it would be this bad (much like the graduates of 2016, good luck to you). Everyday since getting out, I’ve been waiting for the miracle to come. It’s extremely familiar but then again not at all. When I first got out of hospital in August 2015, it was too early for me to go home, there were complications that then occurred and I went back in a short week later for another 10 days. It’s a story I have yet to get to. But that time it was a brave new world, and my body was ravaged, the scar across my abdomen was still raw and healing, and I was weighing in at about 200 lbs (about 91 kg) from excess fluid, so I couldn’t really walk or shower without help. I had to learn my medication and all my doses, I could barely eat a bite of food and there were multiple complications to come down the road that no one could have foreseen, least of all me.
This time, it’s more of a slow burn and I do NOT feel better than I did in hospital, I was running on adrenaline and pain medication and propelled forward by the prospect of being discharged. In fact, some days I feel a lot worse, physically. Although I feel a LOT less daggy and gross because I can shower and I’m not in a germ factory otherwise known as a hospital room. I’m beyond grateful to be at home. The difference from the first time is that my approach to it all has changed. I’m more realistic about how important it is for me to heal and I’m allowing myself the space to heal because there has got to be a way out of these muddy waters. The truth is that getting discharged from hospital does not mean you automatically feel better. First, there is the physical trauma you just endured that you have to get through (whether it’s procedures or surgeries or infusions or just the harsh reality of being in a hospital); then there is the emotional trauma of that, too, that you need to try to come to terms with in any way you see fit, which maybe you don’t feel like thinking about, or you don’t have the resources for or the wherewithal to do; then you have to figure out a way to actually recover and that is definitely not a straight line. When I was first discharged in April, after the 9 day stint I did, the next day, overzealous and manic and wanting to exist outside the walls of my apartment or a hospital room. I went out walking on the Upper West Side, I met a friend for lunch, I went to another’s to collect some delicious passover food she kindly shared with me, I walked a total of 20 blocks and I even went into a couple of shops. A short 2 days later I was back in hospital.
A lot of people (family, friends, doctors, the sweet Yemeni dude at my bodega, my mother’s dog walker) have a lot of opinions about how I should be doing things. These opinions are borne out of love, concern and the loss for words that often accompanies facing someone with an illness, and I don’t blame them for it, even though sometimes I just don’t want to hear it. I get it, I’ve been there, I’ve not known what to say before. I have trouble sometimes not letting those voices in (because it’s my own voice, too) that say ‘You’re not doing enough, Nora’, ‘You should be doing it this way, Nora.’ That’s not necessarily what they’re saying, but that’s what I hear. They’re simply making suggestions in a situation where there is no roadmap. In fact, the map has been burnt to a crisp and we live in a world where Siri never existed and GPS is just some acronym for a school Gwyneth Paltrow founded in the hopes of spreading her healthy living to the young minds of the future (alternate realities being what they are). But I’m trying to take on the advice that maybe I do need to hear and tune out the ideas that I know are not right for me, because I’m the one experiencing this, I am the one walking this path and I am the one who knows what I have to do to get better, even when it all feels supremely uncertain.
I am back to taking almost 40 pills a day, give or take. It’s not 40 different medications a day, but it’s a gargantuan amount of pills to take everyday. I am better at getting them down me now, I’m used to it, and I’m not as fragile as I once was. But I’m still fragile. We are all fragile when confronted with massive doses of chemicals that keep you alive and your friendly new liver inside you and simultaneously fuck your shit up to a whole new level! We’re all fragile for any number of different reasons. And they all but eradicate my immune system. So in many ways, I feel back at square one, but I have the benefit of experience to aid me in getting through it. Which is also to my detriment because I still feel the constant fear of something going awry at any given time, because historically, that has been the case. I am not sure why I feel so sick to my stomach round the clock, or have strange pains that pop up out of nowhere, why my digestive system seems to have broken down altogether in the past 2 weeks (of which I’ll spare you the details, but you have an imagination — use it), why the smallest task will take the wind out of my sails altogether or why I need to take daily 2–3 hour naps and still don’t feel rested or alive. This is not me, this is not the person I had become accustomed to over my healthy 28 years, why some days I’ll feel a bit of a sore throat and think ‘Right, that’s it, incoming flu, I’m screwed’. And frankly, it’s unfair. This current reality is not what I had envisioned for myself. I think a lot of these symptoms have to do with the medication, and the fact that two plastic stents were place in my bile ducts as a preventative measure by my doctors in case of obstruction. And I am promised things will get better with time, and even on the hardest days I try not to lose sight of that. And if I do, one of my parents will remind me that it will.
To give you some context on the medication, after transplant last year I started out on about the same amount of medication. But because of the fact that I went into Acute Liver Rejection in April, they then added the the thymo-globulin infusions for 10 days which I wrote about here, which is an immunosuppressant medication usually given to kidney transplant patients. They then added a sizable dose of Evirolimus, another immunosuppressant (also known as a spell Harry Potter and Hermione Granger get stuck right into at Hogwarts that gives Snape the incurable flu, at least that’s what it is in my head, it’s not on the medication box, surprisingly). So now I’ve had 5 immunosuppressants put on my plate and that’s what we’re working with (the thymo infusions, the Harry Potter drug, tacrolimus, Myfortic and Prednisone, which are steroids). Plus there are pills for indigestion, which don’t work or if they do and the indigestion I’m currently experiencing is anything to go by, I’d be in a world of hurt if I wasn’t taking it; one for itching because I’m constantly itchy all over my body because my bilirubin count is still so high, which means my eyes are still yellow which is purely an aesthetic concern at this point, there are magnesium and calcium and Vit D supplements, a pre-natal pill because I am obvs family planning right now, it just makes sense, the timing feels so right to have a baby, you know? Nah, it’s a multi-vitamin disguised in pretty baby packaging. There are two anti-infection meds, one called Fluconazole (the cool kids aka docs and nurses call it ‘Fluke’) which I was already on forever because of a fungal infection they found in my blood last summer and the other is Valcyte (no sweet abbreviation for that one unfortunately), because I contracted CMV in December and your risk of getting it again is much higher when you’ve had it already and you’re immunosuppressed, and having it as an immunosuppressed transplant patient is not pretty, or easy. Before I went into rejection, I think I had gone down to something like 10 pills a day, so it’s a big jump.
I’ve now got a stye in my eye that for all intents and purposes is not a big deal, but when you’re dealing with a broken body, it feels big. The steroids make you a bit manic, and extremely shaky. Sometimes I have been unable to get my fork to my mouth without losing a bunch of food on the way to my mouth. Some days or even hours are better than others. I’ve also got this strange thing happening where I get a massive hole of hunger every couple of hours, and then as soon as I eat a few bites I feel nauseous or indigested or both. My nose is bleeding (WHY IS MY NOSE BLEEDING). And according to my blood work from this week, I’m not absorbing any nutrients most likely because of said digestive issues. Which is unfortunate because I was wrapping my head round eating super healthy, I even managed to cook (or rather, direct my sweet friend Tara on what to do as I stood up and sat down, stood up and sat down), making two really healthy soups that would give me proper nourishment and was trying to really have a swing at it (and because it’s how I love to eat, anyway). Then I found out I may as well have been eating wood chips for breakfast, lunch and dinner. Thankfully my ultimate and sometimes borderline irrational fear of contracting C. Diff has come back negative twice, which is really lucky because that infection was really the lowest point of my life thus far. My doctors and everyone at Weill-Cornell are being extremely kind and they know I don’t want to go back into hospital, that facing another hospitalization at this point might truly break me. They know this because I straight up told them that last week, which I’ll talk about in another post. But they can’t tell me why I feel so awful and we are just ‘holding tight’ (their words) for the numbers to get better, which they are, slowly (which was also to be expected, and which I do not take for granted). I have a theory that although they’re familiar with the complications that arise, one might call them experts, they don’t really like to blame the medication despite the insane amount of side effects that are clearly stated on each one, at least that’s been my experience. But they are doing everything they can to keep me out of hospital, and I’ve been going into the clinic 2–3 times a week to get my blood work done.
At many points in my early recovery, people would ask ‘So what do you get up to everyday?’ or ‘How are you filling your time?’ I am aware enough to know that it’s a completely harmless question and it’s not to pass any judgement on me. Again, it’s a question for question’s sake. But I’d find myself almost making things up sometimes, because of pressure I put on myself and also the pressure that society at large puts on all of us to be doing, doing, doing all the time. The irony is though that I didn’t feel well enough to even look at a screen and watch TV, I couldn’t actually bear it, and if I couldn’t bring myself to even do that, all bets were off. And I did do some things — I took some online classes learning how to code and a Spanish class, as I started to feel better and weight dropped off me I did make it out to walk and regain muscle, I did start to meet friends in a setting other than my home, I did watch some television and probably binged a couple of shows, I remember I watched the Entourage movie at 1130am on a Wednesday and it was just as glorious and awful to see Vinnie and the boys back together again. I read books, I wrote, I had a lot of people come visit me, I started making my own beauty products, I bought a lot of presents for people online which turned into a compulsion and I had to then stop, I looked at Instagram far too much and went into Instagram K-holes where one time I somehow got to Gigi Hadid’s father and actually looked at his photos for 20 minutes (WHYYYYY?). So, yeah, historically, I’ve become accustomed to expecting setbacks, this last one being the worst one so far. But I also have historical context that things get better, that nothing is forever. And I have the benefit of both those pieces of information to allow myself to sit with the sorrow and know that joy is within reach, too. That everyday won’t always feel like a slog, that I will feel like eating not just for sustenance one day, that I will be able to go out and live, in a different way, but live, eventually. It just takes time. And rest. And meditation. And surrendering to the physical body in order to get to the other side.
I had a friend when I was 17, he was one of those fatalistic, romantic dudes who had a bit of a death wish. We met studying in France and took a trip to California with a bunch of us and drove from Malibu to Santa Cruz and then what was supposed to be a few days in San Francisco. He bought one of those police radar things for the car so he could go super fast. At a certain point, leaving Santa Cruz to go to San Francisco he got lost and went up a hill off Route 17 and pulled into oncoming Southbound traffic to get on the Northbound side and we were hit by two cars. Our car flew into a deep ravine and thankfully we were stopped by two trees, I saw the whole ‘life flash before my eyes’ thing. The two boys in the front had minor injuries, and myself and my other friend in the back were luckily unscathed. A line I remember him saying a few times on this trip was ‘I think I’m going to die before I’m 27', probably some romantic ideal gleaned from the famous people who had died at 27. I remember thinking it was an odd thing to say, but sort of feeling the same way, that maybe, in my 17 year old, impressionable mind, I maybe wouldn’t make it to 30. I think I probably even agreed with him and said something like ‘Ya I probably won’t either but I think I’ll make it to 30'. Ugh, teenagers. When I have, in the past year, and more recently, in the past 2 weeks, allowed thoughts of death to creep in, which they inevitably have, I’ve often thought back to these conversations. And how I could so flippantly just write off my own life like that (in defense of my teenage self, 30 to a 17 year old seems 100 years away. Even to a 23 year old, 30 is OAP status). But there was a death, the death of my old life: it doesn’t exist anymore and I can’t try to fit it in to where I am now. It doesn’t mean everything has to radically change, but I have radically changed, and that is not something to be ignored or brushed aside for the sake of some old life that no longer exists. It doesn’t make me any less me, it doesn’t mean that my personality is all of a sudden completely different or that I don’t miss the old life or honour the experiences that I’ve had that make me, me. I don’t think I’m going to die anytime soon, I have a lot left to do before I do. I can’t be certain, though, neither can any one of you. I’m hoping to clock out closer to 75 or 80 but one just never knows. I mean, Manhattan might be submerged under water by then, so who’s to say. But there is absolutely nothing like having it all snatched away from you in the blink of an eye and then dealing with the repercussions of that to make you really take a step back and understand truths that you just didn’t even see were there before. And hope for a better day tomorrow, because that’s all any of us can do, really.
