It’s a new year and with that comes many proclamations at every turn that we are all to start afresh and recommit to that which we want to see grow. I am a sucker for resolutions and intentions and I will readily admit I love a good full moon just so I can reset and create ritual. So generally at the New Year I make a list a mile long of goals and resolutions to change ABSOLUTELY EVERYTHING ABOUT MY LIFE AND PERSONALITY AND IT WILL ALL BE DIFFERENT THIS TIME. Somehow it never works out that way. This year I simplified it. I wrote out a big list of goals I have for myself and whether or not they all materialize in the 12 short months we have in 2018 is not of great importance to me. But the one resolution and intention I have and continue repeating back to myself each morning is this: focus and commitment to love and service. That's it. If I approach each day with that intention, the other stuff will come more readily, or it won't - but either way I'll know what my priority is. In 2018, I can't see what else is more important to foster than love and service. My favourite thing I have seen flying around the internet about the new year and the maniacal proclamations that come along with it is from Neil deGrasse Tyson:
For myself, 2017 was a year of many, many lessons--too many lessons, I did not want anymore lessons, can we just stop with the lessons already? I went within and tried to get clear about my identity, my daily practices, what I want out of life and what I needed to heal emotionally and physically. I spent the first six months of the year still crying every single day. And at some point it stopped being everyday. Time is one wily fox! It always helps you move out of one space into the next. In regards to this blog, I was convinced I had to stop for a while in order to see what I was getting out of it and where it was stopping me from moving forward. A lot went down in my personal life, too, that for a time seemed unbearable. And I didn’t know exactly how to write about transplant (it being so extremely personal) without writing about other aspects of my day-to-day reality with out giving away, what I felt, was too much information. I know -- privacy?? Me?? For some, airing out the pain of any certain experience can be cathartic (and for me, this is certainly true), and for others it can be a tawdry way of holding on to the experience which can sometimes stop you from moving forward (also true for me). I have been practicing, over the past year, looking at life from multiple perspectives and allowing myself to be multi-dimensional--I might want to share every detail about the shape of my new liver and what it looked like on the operating table, and I also might want to keep certain aspects of my life private. This practice has allowed me to realize that I can, in fact, do both. It doesn't have to be all or nothing. There is an impressive duality to everything which can really mess with your head if you think about it for too long. I wanted so much to tell the story in a perfect way that I lost sight of why I was even writing about my transplant or remembered the reason I started this blog in the first place.
The reason I started it was not to hold on to illness like a shiny trophy in a locked up case. And in some ways, it did begin to feel that way. For a time, well-meaning friends and acquaintances would remark on how much better I seemed to be. I would say yes, but I still feel unwell a lot of the time--I needed them to know that. I mean, I AM the one who has experienced the most amount of pain ever in the history of the world, right? No, Nora, I’m sorry: you do not win that award this year, better luck next time. It's a GOOD thing to be unattached to illness, and moving away from it. For a time, I felt like it was the only thing I had. The reason I started this blog in February of 2016 was to help others going through a similar experience who might feel alone and at sea and be looking for relatable and honest information about the experience of going through an illness, major (or minor) surgery or trauma. Specifically, for those going through a liver transplant. It was important for me to take a step back from my story to see it from another perspective, and to get to another phase of my healing. There is also the tiny matter of me just being embarrassed and ashamed of how honest I was at the beginning, and as I became more terrestrial and in my own skin again, many of my old insecurities crept back in. Which is what had always stopped me right in my tracks whenever something good started to happen in regards to my own creativity. I wondered whether I was qualified enough to write a blog about illness. Did I have all the information? Was my voice authentic? Did anyone even give a shit about what I was writing? Despite overwhelming evidence that all the answers to these questions were a resounding yes, I chose to sit in fear that the majority of people reading my writing were rolling their eyes, wondering why I bothered to share. Which now, even as I write this and that negative voice creeps in, I also know that the voice is a liar and a fuckhead. Also, confidence belies experience - and I have bucketloads of experience in this arena - 2+ years to be exact - it's that pesky confidence that needs a more fine-tuned cultivation.
I share these insecurities not to curry sympathy, to complain for the sake of it or to fish for compliments about how beautiful my prose was, is and always has been (although if you look below, the comments section is open and ready for business). Nor am I attempting to excuse another truth of the matter: I'm lazy and tired and utterly bored by my story at times. I share this to simply express vulnerability, it's not always straightforward to make sense of a life-altering event in a public way, no matter how large or small the public may be. I have a beloved teacher and mentor that I have been very fortunate to have been working with since the summer of 2016. I spoke to her on the 2nd of January and I expressed my hesitation about writing, my fear surrounding it. Slightly exasperated (and she NEVER gets exasperated), she said, "Oh, Nora, this is an old tape - it's your responsibility to continue to write, it's a part of your healing." Ok, steady on then - get to work.
For Christmas my parents gave me bell hooks’ book All About Love. In one chapter she talks about self-love and self-acceptance, which is something I have worked so hard on in the past year that sometimes I’m like FUCKIN HELL CAN WE JUST LOOK OUTSIDE OURSELVES FOR LOVE JUST THIS ONCE, then I do and I end up buying clothing or busying myself with other peoples’ lives or doing all the things I’ve always done to create a false sense of self-worth (except for drinking to excess, smoking or doing drugs). And I come up nil. Everytime. So I go back to the drawing board. Self-love, for me, is something I have to re-commit to practicing sometimes down to the minute. hooks says:
“Self-acceptance is hard for many of us. There is a voice inside that is constantly judging, first ourselves and then others. That voice enjoys the indulgence of an endless negative critique. Because we have learned to believe negativity is more realistic, it appears more real than any positive voice. Once we being to replace negative thinking with positive thinking, it becomes utterly clear that, far from being realistic, negative thinking is absolutely disenabling. When we are positive we not only accept and affirm ourselves, we are able to affirm and accept others.” The more we accept ourselves, the better prepared we are to take responsibility in all areas of our lives. Commenting on this third pillar of self-esteem, Branden defines self-responsbility as the willingness ‘to take responsibility for my actions and the attainment of my goals...for my life and well-being’ Taking responsibility does not mean that we deny the reality of institutionalized injustice. For example, racism, sexism and homophobia all create barriers and concrete incidents of discrimination. Simply taking responsibility does not mean that we can prevent discriminatory acts from happening. But we can choose how we respond to acts of injustice. Taking responsibility means that in the face of barriers we still have the capacity to invent our lives, to shape our destinies in ways that maximize our well-being. Every day we practice this shape shifting to cope with realities we cannot easily change.” All About Love, page 56-57
I mean, I could type up the entire chapter—nae, the entire book, but I'll spare you - go BUY this shit. It’s awe-inspiring to read something written in 1999 that still holds up so well 20 years on, especially with the advent of social media in the interim years and its detrimental effects on our collective psyche. For me, 2017 was so much about this: how do I navigate talking about little old me, privileged New York white woman who had an—albeit extreme and let’s face it, at times pretty fascinating—brush with illness and death in the face of a Trump presidency, countless injustices occurring on a daily basis around the world, and assaults on our basic human rights day-in and day-out. To add insult to injury, the world is quite literally on fire and in floods. So how do I talk about transplant from the perspective of someone who is well taken care of and has endless support from a wide-ranging network of people when so many others are suffering? I tell the truth, I talk about it, I get better and better all the time and I keep moving forward. I’m still on disability and navigating the health insurance system everyday, bogged down by calls to and from the hospital, the insurance companies, Social Security, bill collectors and countless other mundane but necessary tasks. But I'm also doing freelance work which gives me purpose and satisfaction. I still have days where I feel so tired I wonder whether it's being over 30 or because my liver is under-performing that day or maybe I got the flu from the guy at the pharmacy wearing a mask and it took everything I had to not yell WHY ARE YOU WEARING A MASK DO YOU HAVE A COPY OF YOUR MOST RECENT BLOODWORK TO SHARE WITH ME? Even on those fatigued and paranoid days, I can make myself do more than I ever could even a year ago. There is a humbling duality to healing, it is the most mind-blowing non-linear experience I've ever been subjected to and participant in. Much like grief, there are stages to it and no concrete timeline to speak of. The business of writing about it is the business of using my experience to talk about the flaws in the system, about the daily injustices I experience and therefore hundreds of thousands of others may experience.
Sometimes I don’t have the energy to even face any of it, much less drudge it all back up--it's so much easier to just plod along and obsess about the news or what's happening outside myself. It's daunting when year two sets in and I realize that actually, the rest of my life will be dictated by having access to excellent healthcare and my choices will be dictated by that, too. I honestly, for a time, thought that maybe the rest of my life wouldn't be dictated by a health condition -- the power of self-delusion is, well, powerful. I know having access is a privilege, as the daily assaults on our access to healthcare become more frequent and real with each passing day. I have realized, with time and space, that my responsibility is to invent my life even in the face of barriers. And last year was a practice in “shape shifting to cope with realities we cannot easily change" as hooks puts it so eloquently. I put on all sorts of different hats and tried a number of different things to see what the shape shifting looked like for me. I got to travel, I got to go back to London and remember a part of myself that needed looking at. I got to spend time in California in the winter and I went to Miami and I drove all over the northeast like a complete maniac (after getting a license for the first time at age 29 - post transplant). I wrote for pleasure and also got paid to write - something for so long eluded me. I continued to develop a dedicated daily yoga and meditation practice. I ate everything under the sun I could get my hands on. I gained weight.
I am simply navigating modern life and doing a number of different things the same way I did before and a great many things differently. But my responsibility to myself, if that’s the person who I am to be with for the most amount of time ever in my life (newsflash: that’s true for everyone--did you KNOW that? I seem to have just figured it out), and the person I love the most in the world, is to tell my story. To further the idea of there being a duality to everything - it's not the only thing I have to do, nor will it be. But it's one thing I can keep showing up to do each day. It’s what I have to work with and it’s also the way in which I can fight injustice: in any small way – if we can, together, raise more awareness about the shortage of available organs in this country and around the world; the many, many people dying from opiate addiction every year and being placed on the transplant list due to a huge uptick in access to drugs like oxycodone and fentanyl, the lack of awareness about either of these catastrophic circumstances and a conversation about a very flawed system, then it’s worth sharing it all.
In 2017 I went through a lot of self-doubt, and for a time I gave up on writing all together. But even if part of my healing was to stop writing, I know for damn sure part of my continued and important work in the world is to write and share what I experienced in the most honest way that I am able so that even if one person can feel less alone, then I’ll have done the work I need to do. The healing for me is the writing and the writing is the healing. If 2017 for me was a year of introspection, surrender and attempting to make sense of my reality beyond the narrative, may 2018 be a time in which I resolve to write more, share more and communicate my truth to power. Happy New Year.