transplantstories

HAPPY VALENTINE'S DAY, CALLING ALL ORGAN DONORS by Nora Logan

Valentine's Day is also National Organ Donor Day, which was created to discuss organ donation and transplants. I suppose the idea around this is to remind us on a day all about love, to give a little love to someone you don't know and will perhaps never meet. To give a gift with not much ego behind it after you have died. So I'd like to implore you, if you haven't already to commit to a daily "action" today -- and sign up to be an organ donor. Wherever you are in the world, just look up "how to become an organ donor" and the information about how to register should pop up. For those in the US and the UK, I have included links on how to sign up below (in a not-so-subtle ploy to get you to keep reading).

Last weekend, I had what could only be described as the blues accompanied by a vague feeling of sick I've become most accustomed to. I couldn't stop crying and I couldn't put my finger on why. I blamed it, as I do almost everything, on the moon. It was about to be a full moon, which always affects me, but it was more than that. The week before I had remembered that it was going to be my one and a half year anniversary of my liver transplant, yet on the actual days, which fall on the 5th and 6th of the month (I went in on the 5th for the operation and was out in the early hours of the 6th -- so I have of course given myself two days to commemorate the occasion). I was so caught up in emotion that I didn't even think of it. Then, two days later I had a healing experience during a sound meditation in which I worked through a lot of pieces of my own particular puzzle and some surprising things came up. It was there that I remembered that it was my "transplantversary" and realized that this happens to me every month, to varying degrees of intensity, and every month I somehow don't remember when it's actually happening. I'm all "I wonder why I feel so crazy right now and am self sabotaging at every turn", and my liver is all "I wonder why Nora is such an idiot and never remembers this shit."  I'm going to start putting an alarm on my phone so I know to warn all my loved ones and anyone in my immediate vicinity. During the sound bath I had a visceral memory come up of my best friend Karina rubbing my swollen feet--full of fluid from the operation.

Day-in, day-out, Karina would come to the hospital and take care of me. She would massage my feet to help alleviate the discomfort I felt, my skin taut from edema all over my body. After the hospital, she would come to my house and do it (amongst a whole host of other tasks both menial or otherwise. She was also a true advocate for me in hospital, when myself or my parents were unable to do it). It was a small act, but it took courage. It takes courage and bravery to show up for someone in that way, to look at someone's pain and then let love be a motivator and figure out a way to help, however small (or big as it often was with Karina). I haven't yet had the opportunity to write about her properly--just as I was getting to the point in the story where she figures so massively, I got sick again and could not tell it in the way I had planned or hoped to. That's how life works, best laid plans get totally driven off the rails regularly!

Sometimes it's difficult to put into words everything she has done for me, the task seems too large and the details too intimate. She rolled me out the hospital in a wheelchair after transplant, and came to my house everyday to take care of me, and my parents. She was constantly brainstorming ways in which she could help, get others to help and--the ultimate uphill battle--get me to help myself. She showed up with food when I could not eat, to normalize things. She told me I would feel normal one day because she knew it in her heart. She helped me believe I could walk, and she helped me then do it. She made me have goals and she helped me achieve them. In the sound bath last week, I flashed back to that image of Karina at the end of my hospital bed massaging my feet, and another of her doing it in my living room and again in my bedroom. Then another came up: I repeatedly would hear jazz music in my ear (think saxophone street performer), 80s hip hop too (think Eric B & Rakim's "Don't Sweat The Technique"), and I would always ask her whether she could hear it. I was convinced it was not a hallucination. "Do you hear that, K?" She would ask me to explain what I was hearing to her, with genuine interest, so she could understand. Then another image popped up: walking around the nurse's station with her hand in mine, she would say: "Just one more lap and then you can go back to bed." Of me hating her for it because it was too hard to walk. Of her buying deodorant and toothpaste and saying, "Don't forget to use those today." And me not understanding why at the time. She just wanted me to feel normal. When I was finally allowed to have a shower, after so many days, weeks, she was the one who helped me do it. She washed my hair for me. She brought really good smelling soap to make it as pleasant an experience as it could be, which it wasn't. But she made it so it was something to enjoy. These memories and so many more came flooding back and it hit me like a wall of pain and love. 

I can walk now for as long as almost an hour without getting too tired. This is massive. I get tired, but I work through it so I can build up endurance. And I hear her voice in my head, and I keep going. I hear her saying "I'm coming over with bagels and cream cheese and then we can go on a walk!" or "Think about your next few goals and then we can go for one of them today!" She didn't care how small the goal was: as long as I still had them. One of the first ones was to feel the grass underneath my toes and the sun on my face after being in a hospital bed for so long. She made it her mission to get me there, and even though I could barely do it at the time and we probably only stayed outside for all of 30 minutes, we did it together. She pushed me along in my walker to Riverside Park, her small Colombian frame somehow strong and sturdy enough to hold the weight of me and push me there, which must be the Austrian mountain woman in her. It can't have been easy to do that, to show up for me in that way everyday for so long, especially when so often I would say no. I would fight her on so many things she suggested, because I had lost the willpower to go on or I just physically could not do it. She was always cheerful and positive for me in those early days, when all she wanted to do was cry. Later on, she cried with me, too. In my case, for such a long time, I didn't believe I could -- that maxim that we so often see floating around "She believed she could, so she did." Actually, a hell of a lot of other people believed I could, so I did. They held space for me for so long that now I do believe I can, so I keep going. 

Beyond the emotion of all these thoughts and memories which so often wash over me and especially last week (which I find to be less troublesome and more inconvenient than anything), I was able to recognize how far I have come from those days when I had those swollen empanadas which I thought would never go back to normal. The weight of time spent recovering does sometimes tend to feel like a heavy chain around my neck. When I decide to look at it in a different light, rather than that of a weight upon me: I can see I am starting to really and truly show up for myself in the ways that matter, so that I can then be of service to others--eventually. And I am able to also recognize that I've made so much progress. And that the story, although still such a huge part of my life and day-to-day, does not own me. 

I tell this small story about my friend K and her part in my recovery in relation to organ donation because I think it matters when it comes to being an organ donor. Think about something happening to your best friend, your sister, your daughter, your brother, your mother, your father, your cousin. Think about losing them. Think about what you would do to bring them back, if you could. Being able to give them a second chance. Think about all the people who would show up for you and how you would also show up for them. And having the opportunity to help them do that, by being an organ donor, and what a gift that would be. And although the road is long and shitty and also full of shit (not a metaphor), it's worth it. Even when a fascist becomes president. Even when the world is in a continued state of flux. Even when basic human rights are being infringed upon. Especially when human rights are being infringed upon. In those times, you have to hold on to love and small moments of joy to fill you up.

It really freaks me out sometimes, the fact that I have another person's organ in my body. Not my own. If I think about it a bit too much, it starts to feel like a sci-fi flick. Other times, I'm in awe of the miraculous nature of this surgery and inclined to honour my organ donor's life. It is important to be an organ donor, for every single person who values being of service to others (which should be all of us). In a time in which we are seeing so much hate and derision and we have been thrown into absolute chaos, it's such a simple thing to do but it can mean so much to so many. It's something we CAN have control over. We do not get to choose when we die, or how. That's the guarantee. We do get to choose how we act in this very moment. Valentine's Day can sometimes make those who are perhaps not in a *traditional* relationship feel a bit worthless. I am only human, and I admit, at certain moments today, I felt sorry for myself. But I heard something last week in a meditation class I went to. The teacher said "You know, meditation is a really badass thing to do. You're showing up for yourself. In a sense, it's dating yourself and getting to know yourself on an extremely intimate level. That's not always easy, because sometimes you see things that you didn't want to look at. But it's the most intimate and ultimately important relationship you can have." I like looking at meditation in that way, as fostering a relationship with yourself in the most intimate way possible. It's extremely empowering and sometimes ugly, because there are parts of oneself that are not pretty and most of us don't like to admit it. 

If I can transform my self-pity and channel it into gratitude, I'm immediately given an opportunity to be grateful for my liver and my life, and my loved ones. And the fact that I can wake up and finally feel hungry and cook a breakfast for myself. And finally ride a bicycle. And finally walk around for longer than 10 minutes. And finally start to feel human again, and like a woman. And date myself. And eventually, through all of this daily learning, date someone else. But not right now, because I don't want to. The fact that I have been awarded this incredible opportunity is not lost on me. So during a time of absolute chaos, check that box on your license. Sign up online. Tweet it. Write it on a napkin. Text it to your family. Make your wishes be known. When you die, this will be a way you can have some agency about the way you live on in memory--which we all sort of want, at some level. If someone receives your liver, I promise you, they'll talk to you everyday. They'll feel you helping them to live, slowly. They'll sometimes hate you. You'll sometimes go underappreciated. You'll sometimes go unheard. You'll sometimes be anxious and unhappy. Sometimes blue. But you'll be loved and held in high regard. The same goes for kidney, pancreas, eyes, heart, lungs and blood. The list goes on. Even if it freaks you out, just don't think about it too much. Just sign up. I promise you, you won't regret it. 

Sign up here, here or here. You can tweet about it with the hashtag #organdonor, simply by saying something like "I want to be an #organdonor." Or something more creative, if you're so inclined. Happy Valentine's Day <3. With that, I'm off to yoga, Karina's voice in my head.

IT'S MY LIVER'S BIRTHDAY AND I'll ACT LIKE THE ONE YEAR OLD SHE IS by Nora Logan

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.

Drawing by Quinn Wilke.&nbsp;

Drawing by Quinn Wilke. 

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).