transplant

HAVE TRANSPLANT, WILL TRAVEL by Nora Logan

When I was given the go-ahead to travel after my transplant, I was terrified. Buses, subways, and shared vehicles to get around town were nerve-wracking enough: I always wore a face mask, sometimes I wore gloves, and I never left home without a full complement of anti-bacterial spray, wipes, and hand sanitiser. I had been notified early on by the doctors that it was dangerous to board a plane and that I’d basically have to wear a hazmat suit if I did decide to do so. The first trip I made was to Miami, only six months after transplant. It was ambitious, but I felt at the time I had to do it.

I booked the ticket, but only after weeks of U.N.-worthy negotiations in my head and with my friends. And by ‘negotiations’, I mean flat-out freaking out. Family, friends, and the occasional stranger and I tensely pawed through the pros and cons: the risks involved, what might happen if I got sick in Florida, what the consequences would be if things went south, how I would manage the sleeping arrangements, what I would be able to eat—and so on. And the pros: the prospect of warm sand underneath my feet as I stood at the ocean’s edge, time with friends in a social setting—something I had very little of in those first months, and respite from January in New York City. 

Even in my imagination I was, at this point, too scared to consider dipping my bare toe in the ocean for fear of bacteria entering my system. My imagination, however, was also able to picture myself far outside of the four walls that seemed to be shrinking in on me during the many months I was stuck there, feeling lonely, sick and depressed. The four walls that defined my world were oppressive and safe, holding me tenderly and choking the life out of me. Three-and-a-half years later, the room is gone; my parents moved three floors down to a smaller apartment, with no lingering vibrations or memories to shoot out of nowhere and shock me into that grim state of dependence and dis-ease. Three-and-a-half years later, I can picture that room and feel gratitude and a general “Fuck You” attitude in equal parts.

At that time, I had only really been in the cocoon of the apartment, and I barely ventured out into the grime-filled city. I was still too afraid to eat in restaurants (bacteria), or even go to the park (rats). I certainly didn’t dare enter the subway (nor had I yet been permitted to by the doctors). I had acute symptoms of PTSD and I was not prepared for the big bad world. I was no longer the fearless girl let loose in India at 18, the supposedly well-seasoned traveler who got accidentally kidnapped and lived to tell the tale. Here was someone new: nerdy and delicate, who for months regarded a trip to Brooklyn as impossibly exotic, a faraway dream.

The apartment also oppressed my parents; my mother spent as much time in it as I did, often on her feet and making grilled cheese sandwiches I usually had to put down after a bite, making runs to the laundry, and changing the sweaty sheets. My father made me breakfast each morning which more often than not went barely eaten, and took regular trips down to a butcher on 9th Street to pick up bone broth and organic meat to make stews with: since I had to eat a certain amount of protein a day, I could no longer be a vegetarian. Everyone was tired. I was getting better, and I became aware of life beyond my self-contained world. Sometimes it’s easier to do the things we fear out of altruism, and to be able to give my parents a much-deserved rest after months of intensive care-giving appealed to me enough to start turning the tide. I also knew that if I didn’t venture out, our collective heads were likely to explode. In the end, my desire to do something to help ease the frazzled nerves of our family won out over fear, (added to that the ripe seduction of freedom - at long last, freedom!).

Yet the girl who, since the age of seven had filled two passports— American and British—with stamps and visas from four continents, must have been in there, somewhere. That girl left the dreary worrywart at the gate and boarded a plane heading out of subzero temperatures in New York City to land in warm and sunny Miami. I booked in a safe-sounding 6 days, so I could get back in time for blood work the following week and back to my sterile bedroom for safety. When my transplant PA gave me the green light to go, her only words of advice were “Don’t use the airplane toilet.” I couldn’t believe she let me go. I half-expected her to put the kibosh on it immediately when I asked (and half-hoped, since my fear needed something to feed on). But the angel let me go.

This first trip was rocky. There were tears in transit; there were tears pretty much daily. If you told me tears were healing waters that bathed my new liver, I’d tell you I was over-medicating. But there was lots of laughter, too, the famous ‘best medicine’, more powerful than tears, with highly preferable side effects. I had to laugh at my first plane trip. I was slung into a wheelchair and used the airport assistance in New York and on landing in Miami—which was an entirely new paradigm for me. I wore a mask and doused myself with hand sanitiser so often that I may as well have showered in the stuff. I used half a box of antibacterial wipes trying to scrub away germ-infested surfaces, which included every part of my seat. I imagined an invisible jelly of strangers’ dead skin cells, splattered, dried vomit, carelessly changed babies, the drool of passed-out drunkards. I didn’t even look at the toilet, much less go anywhere near it. When I was in-flight, I wrapped my scarf around my head so no germs could enter, or germ-infested people could come anywhere near my personal space (it was January after all). Anytime someone coughed, I flinched. I’d like to say that’s the only time I travelled in that way, but those rituals continued for a couple of years. That was the only trip I would make in that first year of transplant, because of a rejection episode that came in April. But it was a triumph. It spelled an idea of actual life being a possibility after transplant. I hadn’t been so sure.

The next trip wouldn’t be until the beginning of 2017, when I went to LA and was equally as terrified, but with a bigger bag and more trauma under my belt. I cried at least five times, coming and going. I broke down even before the plane took off because, weakened by two years of undernourishment and over-medication, I couldn’t lift my hand luggage high enough to go into the overhead bins and the flight attendant—bizarrely—refused to help me. It was a low moment and one in which I wished the devastation inside my body was visible, so I didn’t have to explain.

I later sent a strongly worded letter to the airline, which was far too verbose and a wee bit overwrought—but I saw clearly that the people on the flight who were supposed to help wouldn’t help me because I didn’t look like your standard “disabled” person. Even worse, I could practically see speech bubbles over their heads calling me spoiled, over-privileged or lazy. In response, they said they were taking the matter seriously and gave me $100 for my trouble, which made me feel a little cheap (and yes, of course I took it). I booked five flights with it. Ya, right.

I’ve often experienced this perceived ableism. People, strangers, to whom you appeal for help with heavy baggage, a place to sit down because of a dizzy spell or…fill in the blank…can be obtuse and unhelpful. There are various levels, from a look of subtle disbelief, to eye-rolling, resentful assistance. But the worst is when someone just dismisses my stated needs, which happened with more regularity as I recovered and now looked so good. I have tried to be stoic and ignore my own needs before asking for help. This is not advisable, but I’ve found it inevitable that even when I clearly state my medical history and explain real dangers to my immune system in a situation that poses no threat to anyone else, my careful explanation is not always met with compassion or even understanding. Sometimes it’s actually easier to navigate by practicing stoicism, rather than complain. And of course, sometimes you meet someone who gets it, and helps.

After the success and joy of venturing for the first time outside of my four walls, I’ve gone full throttle into travelling. I take precautions and take care of my transplant, and luckily, I’ve always been ok (touch wood). The very tired, very frightened person who couldn’t imagine putting even one little toe into the Atlantic Ocean in Miami has been slowly re-growing fins. I cautiously began to swim back to myself, starting with speedboats, canoes, even a sailboat; I went on to floating on a raft in a clean Canadian lake, I let white water whoosh over my feet in a Vermont creek, I dove into a certified-sanitary swimming pool.

On the two-year anniversary of my transplant, I stood with my feet in the sand looking out at the Cantabrian Sea—next to the Atlantic Ocean once more. I took a few ginger steps into the salty and warm August water, salty tears pouring out of my eyes. I cried not only because I finally found the courage (and opportunity) to swim in the sea but also because I couldn’t believe my growth—that I had emotionally overcome the fear that was so present for so long. And I could not have got there without self-work, therapy, and a commitment to reminding myself that I was transplanted to live, not to hide. And though I often do let fear take over—I still flinch if I’m sat near someone who displays even a slight sniffle (but I no longer make faces, which was always a bit rude), it’s not the first thing I reach for.

My doctor told me that the surgical masks don’t actually work very well against microbes in a plane, and that I only really had to wear one if it made me feel better. So I always travel with a supply of masks; I put one on if I feel I need to, but I’ve relaxed about that, too. I still douse myself in hand sanitiser and make sure I wipe down my arm rests and the back of the seat in front of me. I realised last year that, unconsciously or not, I trained myself to never touch my hands to my face in transit. I finally started using the toilet after my bladder was about to burst after a short trip to Canada last year, and now I just make sure to hose myself down on arrival. The shower is my first port of call. I think we should all take up this practice, considering how disgusting airplanes are. I don’t use a wheelchair anymore, but if I’m forced to stand for a long time, sometimes I rethink my decision. Standing for long periods of time result in dizziness and fatigue, and any unwanted attention I get sitting in a wheelchair beats the spectacle of me in a heap on the airport floor.

Ah, fatigue — that pesky foe. Travelling fatigues me completely, in a way it never did before, when a latte or a melatonin was all I needed to reset myself after a 15 hour flight (after which I could easily go out dancing for a further 15). Granted, I was younger then, and most people past their 20s are fatigued by travel. Since the transplant, it takes me a little longer to bounce back from jet-lag; the big difference is that now my body is overcome with an ache that seems to permeate every cell in my body. Knowing that this is my usual reaction, I make sure I am mindful and try not to push myself too hard—although it can be tough to resist going from baggage claim to a party. Last year, I took a chance on a trip to Colombia, and nothing bad happened (except for having all my credit card details stolen, which is less transplant-related and more idiot-related). There wasn’t a shred of ambivalence: I loved every single second. In 2015, I couldn’t have imagined taking such a trip; even in 2017 I probably would not have believed you if you told me it was a possibility.

We all have something that defined us pre-trauma, illness, or accident, and our greatest fear or challenge is that we might not be able to be/do that again. Growing up the way I did, travelling, speaking other languages, learning other cultures, meeting new people felt like some essential part of who I am. The fear of losing that great privilege was huge, but it was just one possible change among so many actual and potential upheavals. It’s not at all lost on me that my privilege is two-pronged: not only am I able-bodied enough to travel now, I also have the means to do it. Even though I’ve had to take certain precautions in the way I carry myself: from the street, to the airport terminal, to the bathroom, to the aircraft—it’s made me more mindful in general, and the small tweaks to my travel routine (what some might call quirks) are a small price to pay to be able to continue to experience the world. The big welcoming world that I’d almost lost.

SCAR LOVE by Nora Logan

Photo by my talented good friend  Celeste Sloman . September 2016.

Photo by my talented good friend Celeste Sloman. September 2016.

In case it's not clear, (or you happened to miss the graphic photos I so merrily put up when I started this blog (thank you, painkillers), I have a massive scar in the middle of my torso. It’s in the shape of a peace sign (without the circle round it). The medical community call this a Mercedes-Benz cut (but I prefer to think of it as a peace sign). When I heard that this was the preferred technique and the one I got I was relieved because when you’re getting an emergency liver transplant you look for the wins wherever you can and getting the MB cut was something I held on to, a badge of honour for my brain. In part because everyone told me how good it looked and how "clean" the cut was, and although when I looked down it seemed to me anything but clean considering I had huge staples stuck into my previously unmarked middle - I believed them. I remember asking one of my surgeons how I was supposed to clean my scar (surely I can't shower with this monstrosity?!). He said, non-plussed (with a bit of a smirk, as is his way), "with soap and water." He was definitely wrong. I was sure if I put soap and water on my scar it would reopen. Terrified, I reluctantly passed a bar of soap around its perimeter. I survived, and so did the scar. That's another point for my surgeon. I also, for a drug-induced time, thought it qualified me to be an owner of a Mercedes-Benz. Although I didn't dare ask my surgeon if he'd be lending me his. 

Since I was stretched for things to think about in a hospital bed, I thought a lot about this Mercedes-Benz cut and pondered all the memories I had about Mercs. It’s a short list so it really only filled about 5 minutes. At 14 years old I went to a boarding school in the suburbs of NYC. I was allowed out on most weekends, and would go stay at friends’ houses during these breaks from the campus. The school I went to was an untraditional boarding school, a mix of boarding and day students. My family had moved to the UK when I was 8 years old, and the prepatory school for girls I went to put me in the wrong year. At least that's my own mythology I've always prescribed to like. My parents were either so desperate to get me into a good school at such a late date in the school year that it was overlooked, or the change from the grade system in the US to the English system in Hong Kong and then another system completely in London confused them so much that it slipped through the cracks. Plus, in their defense, I had always been young for my year so it made sense. By the time I was 11 I was a foot taller than everyone else in my year. I was the only girl who had already got my period and had NO idea what to do about it on the days we had to go swimming, and being held back a year really started to bother me. In fact, it became a fixation. 

So when I was 13 I devised a plan to get put back into the year above, and usually when I hatch a plan there is more or less nothing anyone can do to stop me (my dad is a lawyer, after all, and as a child I became very practiced at negotiating with a professional). My parents hated the plan and did not want to let me leave, but they somehow did (the persistence of a 13 year old girl and their particularly patient and non-controlling type of love allowed me to go on many adventures in my young life). I'd go back to America, where everyone thinks anyone and everyone in the UK is eons ahead in education and general intelligence (the jury is out on this) and I would basically trick them into letting me move forward a year in my education. It was my magic trick. I’m not sure if there are other people who, at 13, have been both held back and skipped a year – but I am living proof that you can do it and whatever year I repeated and then also skipped had no bearing on my future success in getting an A in English Literature and a consistent and pernicious B (ok, sometimes it was a C) in any science class you put me in.

So by 14 I’ve abracadabra-ed face first into this boarding school and am suddenly hanging out with kids who drive. I was friends with some sisters whose family car was a beat up old Mercedes-Benz. Like any daredevil teenagers looking for a thrill, we smoked some very low quality weed and drove the sleepy streets of Scarsdale in their blue car listening to Joni Mitchell's Blue, thinking that our lives were definitely the coolest and most original; then we went back to their house and basically ate everything in the fridge. Like most young people without a fully formed frontal lobe, it’s a miracle that I cheated death so often in my teenage years and early 20s. I have to admit, the Mercedes did make me feel cool. 

The only other memory I have about a Mercedes-Benz is pre-pubescent. We had some family friends in London with a son 4 years my senior. He was charming and so handsome and I had a huge crush on him when I was 12. He was so hot that he had modeled for some Italian Vogue editorial that you could buy in an actual shop. He smoked cigarettes. He painted tortured art pieces and did tortured teenage things. He seemed to me a fully formed adult. Whenever I was in his presence I would basically shut down: like an iPhone on a hot day, my brain would melt and I would have an out of body experience whilst simultaneously trying to remember every single word he said so I never forgot that particular interaction. I had the pre-teenage love for a very beautiful 16 year old, bad. We went on holiday with them one summer and he'd talk about “Mercs” and “Beamers” and the vernacular was the coolest thing I had ever heard in my life and where did he learn to talk like that and how can I be that cool and when will the time come in my life when I am so deeply familiar with luxury cars that I get to call them by cool slang and maybe I will also be a model? Just as soon as I get these braces with red and yellow rubber bands off and grow some boobs that’ll be when.  

I stopped caring about Mercs after that summer (and nothing came of the crush, obviously - see braces reference above), so those are my only two real memories – but now I’m stuck with a murky Merc (C-Class, for cute cut) for life. It’s not going away, I'm not scrubbing it off. I’ll never be able to wear a bikini in the same way (I never, ever liked wearing bikinis). I’ll never be able to get my torso nice and brown (I do not like sunbathing, at all). And I know what you’re thinking, “But Nora, you never realized your dream of becoming of a teenage male model for an edgy London brand!” That was, unfortunately, never on the cards for me.

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Last week, I was driving my best friend’s husband's Mercedes - something I honestly never thought I'd do. She’s just had a baby and I was entrusted with their safety in Miami (safe driving capital of the world) to take baby, mother and grandma to the doctor, on errands, to the supermarket. I was surprised that I wasn’t nervous to do this. It was natural, grown up and totally thrilling to drive a Merc (I now know what my crush was on about all those years ago). My family’s Honda Civic does not go from 0 to 60 in a matter of seconds. We talked about my scar. I’ve had a hard time with it over the past two and a half years. I don’t give it much love or attention. I certainly don't let it out for a night out on the tiles. I only regained feeling in parts of my torso in August of 2017. For so many months I couldn't look at it. Or if I did I would look at only bits of it, for a very short time and cover it right back up. Then for so many more months I would get dressed as quickly as possible so I wouldn't have to deal with looking or thinking about it at all. There are still bits of the actual scar and the surrounding area that I cannot feel, and I don’t know if I’ll ever regain sensation there. These are my complaints: it makes me look so weird, I am self conscious about how it sticks out - I'm sure people look at it like - what the fuck is that golf ball sticking out of that girl's middle? It's particularly bad when I still insist on wearing very tight spandex tops and only remember when I’m already in public. It's not what I thought I'd have, nor what I hoped for. 

I went to my friend's acupuncturist when I was in Miami, and she spoke to me in such a gentle way about my scar. We talked about my hernia, which protrudes like a sore thumb (and is why the scar "sticks out"). She said that she observed there to be an energetic disconnection between my heart and the lower part of my body. I had not contemplated that before. Of course, I've considered at length the ramifications of having bodily trauma on the whole, and a disconnection from your body in general, and becoming more terrestrial as you heal. But the assault to my middle was considerable. “Did you ever break your ribs?” She asked. I had to pause and think it over. When they first cut me open I think they broke a rib in order to get to the liver. My friend confirmed it after in the car. I had completely forgotten this major detail. Then my organs (liver and gall bladder) were taken out and a new one chucked in (I believe that is the technical term). When I developed a hematoma, they performed surgery again - opening my scar up and splaying my skin on the table to save my life once more. The bodily assault doesn't end there, but it would have been enough. I'm sure my middle doesn't particularly appreciate surviving all that and subsequently being ignored. It only encourages a disconnect between my heart and the lower part of my body – energetic or otherwise. But each piece has its time, as I’ve learned and swiftly forgotten through each and every stage of this ongoing recovery (which is really just living).

Karina, who has been a steady constant voice of love and, like everyone in my support network, always encouraging me to progress in my healing said "Maybe it's time for you to give your scar some love. You've been working for so long on your emotional healing, maybe you can focus on paying it some attention this year. It can be another step in your recovery." I agreed, and I said I had been trying to pay it more attention recently, which is true (but not really on purpose, it’s been more of an accidental "oh, hello scar, nice to see you there! How are you doing? Will you be leaving anytime soon? What's that? Never? Oh cool. You won't be fucking off anytime soon then, excellent news. I guess I have to get to know you now since you haven't left yet.") It's easy to agree in the moment; it's not always so easy to get your brain to catch up with your body or vice versa. Since then, I've been looking at it every morning, I've been touching the two deep white lines that crawl up the sides of my torso and meet in the middle to merge and climb up to my sternum. I've been placing a hand on my golf ball of a hernia, in an attempt to love it, because it's a part of me. My scar is not outside of myself; it's not a drawing that is one day going to abracadabra to some other land. I can't send it off to boarding school, it's smack bang in the middle of my body and I can love it, if I'm going to really commit to radical self love and acceptance. It's not my fault that I have this huge scar, and for a long time I've thought it was, that there is something I could do to make it disappear. Maybe if I was a good enough patient it would walk off my body. Maybe if I got specific instructions from my surgeon about how to wash it off, it would go. Maybe if I wore a long enough shirt or baggy enough clothing, it might be able to breathe itself away. I was embarrassed, I thought (and sometimes still think) that I should hide it to make other people comfortable (which is more about me than them), that I need to explain it away or wish it away to be normal. None of it is going away so I may as well love it in the meantime. 

And if my heart is disconnected from the bottom part of my body, it means there is not much energy to speak of flowing from up to down. Which means I may as well get me to a nunnery and get a diamond-encrusted custom chastity belt made. I have yet to go on a date since this all happened. I’ve barely uttered the words that I might want to apart from to my therapist and a few close friend (and now on some indelible internet markings). So if I'm to expect someone else to accept and love it, eventually, whenever I'm ready - I have to start somewhere. Which is long, boring and not particularly thrilling - but most likely worth it in the long run - just like ever other fear inducing trial I've faced (often begrudgingly and with considerable complaint). It's annoying to have to love something that society deems outside of the normal standards of beauty. We all have scars, they're the marks that we've lived. We spend a lot of time trying to cover up physical and emotional scars and I'm not sure to what end - since there is considerable evidence that there is power in vulnerability. Most of us can see straight through bravado. So although I'm not quite at the stage where I'm committing to an all crop top wardrobe, I can give my scar a little love everyday (and at least acknowledge that it's there). And obviously start a lease on a Mercedes-Benz because that's simply the most sensible thing to do.