organdonorawareness

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.

AFTER THE PARTY, IT'S A DOCTOR PARTY by Nora Logan

IF YOU CAN believe it, that Sunday of the wedding was the 19th of July. I didn't end up going to hospital until the 27th. I lived a lot in the 8 days leading up to it. I was dying and I had no idea (not to beat a dead horse but let's beat that dead horse). To this day, I still believe I really and truly had no idea. And I was misinformed. I go into work on Monday morning the 20th of July. And I'm really a hurting unit, so I write a Gchat to my friend Al, I have to go to the real doctor. The trouble was, I didn't have a GP. So Al suggests that I try this place her friend goes to that is basically for people who need a gyno or go for yearly check-ups and they just want a nice calm atmosphere when they walk in and water with fresh slices of lemon in an oversized mason jar and couches from a Swedish design shop that isn't Ikea but basically has the same furniture at a higher price point and some sweet Norah Jones or Jason Mraz or Coldplay or Tibetan gong music playing in the waiting room. Like not cool music, but not waiting room music - you know? It's basically bougie as fuck and you have to pay a membership to be a patient there. They promise you better service, no waiting for appointments and more attentive treatment. It's dumbfounding to me that this is what healthcare has come to in America, but they have a great website and I love easy listening so I bit, I chomped down hard on the proverbial Kool Aid. I was desperate and so I pulled out my plastic and made an appointment. Also, since I didn't have a GP, I couldn't get any appointments for the same day on ZocDoc and at least this place came recommended. I have since got my money back for this membership because of the part they played in my care, which I honestly have to say was negligent.

Ken Kesey's Magic Bus 'Further'. These guys were for sure drinking the Kool Aid. Known as the 'Merry Pranksters'.

'Of course, they could fit me right into the schedule, no worries, come on down.' I got an appointment for 3pm that day. I went into my boss' office and said listen, I have to go to the doctor, and she said 'Yeah, you don't look so good. I can see you're unwell.' So I stay at work until about 2ish and bust out of there and hop down to 23rd street on the subway (it's weird that the most distant memory for me in this story is not the actual memories but what it's like to take the subway anywhere. So fast. So efficient. So germ-infested. So many pizza rats). I was so half-baked at this point that I didn't realise that I was going to see a Nurse Practitioner, not an actual doctor, not someone who had years upon years of experience, not someone who would recognize jaundice as a serious sign of trouble or say definitively 'BITCH, GET YOUR ASS TO THE HOSPITAL RIGHT NOW'. I have since pictured people going into this clinic for when they have something like acid reflux or multiple yeast infections or UTIs or Athlete's Foot or genital warts or Verrucas or a papercut or some other (admittedly annoying) but largely innocuous health issue. They're not the people you go see when your liver is about to fucking fall out of your vagina. I am pretty sure that's not how it works I would have to check with my doctor to make 100% sure but you know what I mean. But they're who I chose as my health professionals. I felt pretty angry at the woman I dealt with there for a long while. I oscillated between, well, she didn't know me, I walked in as a stranger with yellow eyes and she didn't know me from Anna. (Yeah, yeah the expression is from Adam but #girlpower). Who knows, maybe I scared her. 

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I don't want to say she was incompetent, because the woman really was not. I am confident that she is good at her job but I don't really know if she deals with this sort of thing all the time. I think it was a perfect storm for me and just bad luck that that's where I ended up. I walked into her office, after sitting in the lovely, gorgeous waiting room with huge loft ceilings, sipped on some artisanal lemon water and listened to some trendy easy listening across from a well-manicured Flatiron woman who had most likely just come from Dry Bar or is one of those mythical creatures that gets her hair blow-dried 3 times a week and was rocking a next day blow out. Either way, I was in a place where health problems exist, but we can make it all better with interior design and making it seem like we're at Soho House. EXCEPT NO BUT YOU CAN'T DO THAT AT ALL NOT WHEN YOU'RE REAL FUCKED UP.  I went in to present the facts. Bear in mind, this is the second time I'm repeating the Bali story, because this is only the second medical professional I'm seeing. 

This is what this doctor's office had in mind when it was targeting clientele. People with entire Pinterest albums full of candles and crystals. Which is someone I could probably be if I really put my mind to it. Photo courtesy of SoulMakes

I tell her what's up and I tell her my theories (at this point I had a bunch of theories cooked up in my head, some of which I never shared with medical professionals, some of which I did). This woman is newly pregnant and just starting to show, I was so excited for her! I had just come from seeing my godson and nephew and how far along is she and does she have another kid or is this her first and you know just the normal small talk. Nothing. Woman gave me nothing to work with. It was pretty much like getting blood from the stone. She was so chill and nonchalant that I was truly thrown by it. And I hate chit-chat, I don't love small talk, let's get down to business for sure 24/7 if I don't know you, let's not waste time talking about our lives. I don't care, you don't care, neither of us care so let's just get down to what we're here for. But something about her attitude was so bizarrely asleep at the wheel that I was like, I have to get human with you on some level. I need your help and you are not giving me anything here so I need to endear you to me SOMEHOW (more on how I was the most charming and loveable patient NYP has ever seen later). 

I had been having a pretty good year, I was exercising constantly, drinking gallons of green juice, wearing cute outfits and feeling pretty good about the direction I was going in. Photo courtesy of Feedly.

So I move on from the small talk, I was pretty painfully aware that I wasn't going to be buddy buddy with this person: so let's do this thing. 'Basically, I went to Indonesia for 2 weeks, I started vomiting not this past Friday but the one before and it's been pretty steady ever since.' (UH, HELLO THAT'S OVER TEN DAYS WHY DIDN'T SHE TELL ME TO SPRINT TO THE HOSPITAL LIKE DON'T TAKE A CAB JUST FUCKING RUN RIP ALL YOUR CLOTHES OFF AND SHOW UP READY FOR TESTING), 'and I've now developed this jaundice; I'm exhausted and I just can't shake it and it's strange because at first I thought it was jet-lag but now it's just lingering and I don't know what to do. Also I think it has something to do with my ovaries so if you could check those that would be great.' I had this bizarre hunch that there was something wrong with my ovaries. Let me explain.

Photo courtesy of Rachel Antonoff

I had this guy, Pak Durit do this very intense massage on me in Bali. He's friends with my friends and he is an older guy, a healer, a medicine man (Pak means Mr. in bahasa Indonesian, but it's a respected way to address someone, it's mostly for an older person. The female version is Ibu). He comes to your house. The whole story is much longer than what is intended for this post but the first time he did it he touched on a point in my shoulder (from which I had been healing from a surgery for the previous year) and I completely lost my shit. He pushed on an emotional portal or something and I started uncontrollably crying for almost two hours. I got on my scooter to drive to dinner with tears streaming down my face like just bawling my eyes out in the rice paddy. It was wild. Needless to say, I definitely scared the children: 'Aunty No-Wa, why are you so emotionally unhinged?!' Just kidding they didn't say that they are both under 3 years old they don't know how crazy I am yet. Anyway, I saw him again before I left because dude is really a miracle worker, the above anecdote notwithstanding (for what it's worth I thought that emotional release was so rad and just what I needed). When I was lying on my back he went up to my abdomen area and touched on something there. He goes 'Sakit disini' I say 'Sakit mana?' And he points. Pak Durit doesn't speak English and I do not know the words for any of my insides in Indonesian. He was saying 'You're sick here' to which I answered 'Where?' THE NEXT PART IS MY BAD. So I can't exactly remember but I think I somehow worked out that he was pointing to my ovaries. And to be fair, I did end up having cysts on my ovaries which is actually very common and nothing to worry about.

A text I sent to my friend Jenny right after massage-gate 2015. I always laugh at her reply 'That sounds really crazy...' loosely translates to 'You are a total nutjob Nora...'

But I just couldn't let the ovary thing go. I remember it being the morning of my transplant or maybe the day before and asking my surgeon 'Is someone going to listen to me about this ovary thing or WHAT?' No one would let me have a goddamn ovarian ultrasound because they basically knew for a fact that I was dying of liver failure. But I couldn't let go of it. I was like YO MY FRIEND DURIT SAID IT WAS MY OVARIES AND DUDE IS NEVER WRONG. I didn't end up getting that ultrasound until after transplant (when I insisted on it) and ooh buddy it was painful with a gaping Mercedes Benz scar in my middle and having had a catheter in me for days on end. Insert Kelly Clarkson lyrics here. But Pak Durit also looked pretty scared when he was telling me, and he maybe was feeling something wrong with the liver, too. And maybe he could feel that I was in for an absolute world of hurt. And if I had been staying in Bali, I would have been. I would probably actually have been dead by the 6th of August instead of getting a second lease on life. So I think that's what he was so scared about. I can't wait to see him again so I can ask him what went through his mind. I am going to have to learn the words for liver, intestines and ovaries in Indonesian by then which I think I can do and also where the ovaries are in relation to the liver. No I know that second one now so that's one thing I've learned from this experience. Basic human anatomy which I think you're supposed to learn when you're 12 or 13. I'll get back to Durit in another post he is a wise man and an absolute legend. I have wondered, so often, if he knew right there and then what was going on. If it could have saved me all this to-and-froing from Urgent Care to nurse practitioners. I don't know why neither myself nor Claire thought to call the guy in between. Oh well, spilt milk and all that. 

At dinner with the kids and still crying my fucking eyes out. Claire was not impressed. I was like her third child. 

So the most nonchalant, lackadaisical Nurse Practitioner on the planet gets an earful about how I think I have something wrong with my ovaries (Why? Oh, just because, I just have this feeling, you know I'm in touch with my body. No I did not tell her that a Balinese medicine man told me so now I have accepted it as truth).  I know she was pregnant so this is probably not the case but she honestly looked like she had taken a massive rip off a bong before she saw me. I just was not interesting at all to her. Or maybe I terrified her because she was pregnant and I could have some insane tropical disease. Indonesia was, after all, an obsession of every single doctor I met. There was indeed the possibility that I had Hepatitis E and that's what she presented me with. She ordered some labs, she asked for me to send her the blood work I had done at the Urgent Care place and she prescribed me some Compazine (an anti-nausea medication that I would come to know and love with the utmost affection and gratitude, shout-out to Zofran too, love you buddy, thanks for getting me through the first 6 months post-transplant). 

Pak Durit, me and the kids looking on as I got worked THROUGH by him. Look at how cute those kids are. Damn, my ovaries are telling me to procreate so I can have some cute kids like this. 

Meanwhile, I asked my mother to drive me back to Brooklyn because for one, I was just staggering around like a goddamn drunk and also because I hadn't seen her since I got back from Bali. So she picked me up in the car on 21st and 5th and we drove back to Greenpoint. I asked her to stop at this pie shop called The Blue Stove and I got us some apple pie and some other cheese thing and some iced teas. We sat in my back garden and we each smoked a cigarette (best way to quit smoking--go into hospital for 30+ days and don't leave at all and have a few surgeries in between). She cleaned my pool because she has a compulsion to clean things and make everything 'nicey-nice' as she would say. Anne and Barrie were having dinner at a place down the road from me and we went to meet them to say hi. I picked up the Compazine at CVS but they didn't have it so I went to a different CVS down the road which did have it and then I spent another night hugging the toilet bowl. My poor roommates. I don't know how much they could hear but it wasn't pretty, the auditory section of my nighttime routine was not the most calming environment to be in. I remember Keenan sending me off to work everyday 'So you're gonna go? You ok?' 

My mum came to Brooklyn to hang out with me on the Monday after my doctor's appointment, she cleaned the pool.

So the Compazine doesn't work and I'm going for more blood work and urine testing in the morning. And it's only Monday night. We have another 7 days of this shit. God only needed 7 days to create the world and I only needed 7 to realize that I was in a world of trouble, one foot in the ground and knee deep in horse shit and more importantly, needed to get myself to the Emergency Room STAT. Oh wait sorry I needed 17. Guess I'm not God after all. The next morning I would go into their testing facility and pee in the cup. The results would show up as 'Cloudy' and 'Abnormal'. So many Abnormals in that test report. So many. One thing is for sure, I only have the medical degree I received from being in hospital for over 30 days (they give one to everyone once you reach a certain amount of days + procedures), but this urine does not look like the urine of a healthy person. 

I show you this photo of my urine not as an overshare but because to give you a true life story of what you get at a bougie medical office in NYC: burlap bags for urine. Like an episode of Portlandia, but exponentially worse.