When I was seven years old, my parents moved from New York to Hong Kong for my dad’s job, and we set off on an adventure that would change the course of this little Queens Chick’s life. Two years later, we moved to London. At the end of the school year, my teacher had me point to where my family was moving to on a world map and all the kids in my class “oohed” and “aahed”. My seven-year-old brain could barely fathom that a plane could travel that far, much less that there was life beyond New York. The farthest I had travelled by that time in my short life was to Boca Raton in Florida to visit my grandpa. It was the start of a grand adventure, of living all over the world, gathering people up as I went. As I got older, I would get the two year itch — to move on, to keep exploring, to discover new experiences and people. I ended up going to seven different schools and lived in six different countries by the age of 18. I was what they might call a precocious motherfucker. Even though I was always aware of my privilege, and knew it was really just good fortune to have had the opportunity to grow up in such a global way, I still took it for granted in many ways. I thought it would always be accessible. I wouldn't change my experience: I’m inordinately lucky to have lived in other countries at such a young age and see the world in an outward facing way, and to be comfortable living in other countries and cultures. But it can make you feel adrift and like you have no real home. That’s where the friends come in.

Most international school kids will tell you the same thing: once you find the group of friends in which you feel at home — you stick to them like glue, since the rest of your life experience has been so transient. The proverbial glue can mean lots of long-distance relationships over WhatsApp groups, FaceTime, Skype and thank-god-for-the-internet messaging. When you repeatedly show up as the new kid in school and then fall in love with the people around you, only to be forced to move on, you hold on to the good ones.  And try to create some semblance of community wherever you go. I used to sob for hours on end the night before going to a new school. I’d feel particularly different and weird for a while and then slip right into the fold (ah, the resiliency of children). I never felt like I fit in, anywhere, because I was not always only the new kid but also foreign. I am foreign wherever I go, which I’ve come to see as a great gift. I fit in with a group of freaks who understand that experience and have a similar conundrum of not actually having a straight answer to the question: “Where are you from?”. I’ve luckily found them, and because of that — many of them live in other cities, countries, continents. If you ask me where I'm from I will have to ask you how long you have and to please never ask me where I'm from. 

So when I got sick, and was dragging my feet on taking my sorry ass to the hospital, I’d call and text consistently with my multiple long-distance relationships (and also with those who did live near me and also with anyone who would listen, the guy at the bodega on the corner, the cleaning lady at work—the world needed to know and I was getting those phone numbers). Two of my good friends, Jenny and Mike, had just started dating and I acted as confidante to them both. It was basically me just telling them both to man up and fall in love (which they have, successfully — well done guys). My matchmaking services are available for a price as long as you keep a guest room for me wherever you happen to end up and feed me and maybe pay me a stipend. 

When I’d consult Mike about my symptoms (who is definitely not a doctor although I treated him like one during those early days), it would mostly go like this: 

“Mori, I don't know what to do, what should I do?” 

“Nora, you should seek medical help immediately.” 

Then I’d laugh it off and change the subject. I’d keep him up-to-date on the deepening yellow of my eyeballs or how many public bathrooms around NYC I managed to vomit in that day. Through out my subsequent recovery he maintained that healing crystals would not and could not save me. He may have been right, but it didn’t stop me from taking them with me wherever I went for protection. I no longer carry a heavy sack of crystals with me wherever I go, but I do carry one in my pocket and spread them all round my house. Jenny allowed me the space to sob down the phone to her later on, as did many, many-a-loved one —in person or virtually. I certainly upstaged their new relationship with my liver failure, but thankfully they didn’t hold it against me.

At the time we were also planning a trip to Central America for which we had a Whatsapp group called “7 wonders of world tour” (terrible name probably created by my friend Faris). The group provided endless jokes — including the below photo to indicate what I would most likely be doing on the trip. It wasn't too far off from what I would, in fact, be doing in the coming months.

I would send them (and the cleaning lady) photos of my yellowing skin and pock-marked face. I’d get separate messages back “You don’t look so good,” and “What’s going on?!”, and “What do the doctors say?!”.  No one quite knew how to respond and it was difficult to really convey what was happening over text message. Technology does have its limits when attempting to accurately convey a total breakdown of one of your vital organs. Hell, it was hard enough to see in person. Still others would provide comic relief in moments when I didn’t know how to react to the whole horrid thing. 

As time has gone on — it’s now been three years since first getting sick, and two years since my liver rejection — I don’t speak to everyone as much and I no longer ask for consults because I have a team of professionals to do that. Some of that is circumstance: lives get busier, kids are born, moves are made, time feels in shorter supply. But the idea of knowing my people are just down the other end of the phone is enough to get by on. There were times in my illness and recovery I could no longer speak to anyone, because I had nothing to say — and things felt so, so bleak. I’ve since dug myself out of that hole (with considerable help from family, friends, mental health professionals, my social worker, and spiritual teachers). It helps that I am now able to live more and be out in the world — which means I have more to talk about than I did for a long time. Sometimes it’s still hard to pick up the phone, but I push myself to connect when I’m able, because I know it’s how to participate in my community. My world is no longer limited to the merry-go-round of doctors appointments, medication and setbacks. It doesn’t feel so tiny anymore, and I don’t live in the confines my bedroom, shuffling from my room to the kitchen to the bathroom and back again. Although my reality does include the medical appointments, the medication and its accompanying side effects plus the prospect of an occasional setback — the limitations of my experience are less confined. I’m grateful for all the Facetiming I did in my darkest days, and for the many times I didn’t pick up because I just couldn’t face it and for my friends who still stuck with me—and kept trying. And for the knowledge that you can come back to yourself — changed, bruised but still breathing, and maybe for the better. 

FOOD REFUSAL by Nora Logan

I could sit and ponder those hours in the ER for days on end. It's a time before - as in the time before I really knew about what my life would be like later, and how simple my life was before all this happened. After I got out of the ER I was transferred up to this gargantuan room on the 8th floor. I could barely believe my luck. It was huge. My mother and I both thought we were saved by this one doctor who could see how distraught I was by the 26th hour in the ER but actually, I think the more likely reason was because they had not yet ruled out infectious disease and they needed to keep me quarantined for fear of infecting other patients. As soon as they cleared out the possibility of an infectious disease, I was again transferred – to a step-down unit (meaning, one step down from the ICU) on the 5th floor – and was sharing a room with 3 other people.

In that first room on the 8th floor, I was still trying and failing to eat. My outright refusal of food was a real problem through out each room and each stay. Since I was in for such a long while each time, I got to know the orderlies who would bring around the food trays. There was a really angelic woman who would come by everyday, and she really had a vested interest in me eating. I didn’t like the idea of wasting food, which is inevitably what would happen each time I took a tray. So I just started ordering only bananas (always been a banana fan). She’d come in and say: “Only bananas, again? You don’t want anything else?” I’d always refuse, and then my dad would bring me oatmeal (a multi-year, multi-continent love affair - see previous post) or my aunt would bring me food from this place near her house, or the Tonight Show would send me enough food to feed an army. Any visitor I had got a food request through, and my close friends just started bringing food of their own volition, they knew the drill. Through out each hospital stay, I always refused food: on the one hand I felt too sick to eat, and on the other I couldn’t face the cardboard mushroom soup on offer yet again

My mother, on the other hand, was less discerning and at times totally enamoured by the stuff. I distinctly remember being brought a standard plate of food – which had a burger on it – and not even being able to look at it for fear it would make me vomit. She gladly took it and munched it down and tried to give me a big wet meaty kiss – which I rebuffed like any slightly salty-chained-to-a-hospital-bed daughter would. It was there and then that I realized that being confined to a bed would make for a lot of unwanted advances from every turn, so thank god the first one was from my mum. At the beginning, and after transplant, food refusal really was because I could barely stomach a thing. Eventually I knew the menu so well and had tasted enough of the dishes to know I was better off finding another way to get fed. The food they try to pass off as edible in hospitals is astonishing, and everything has sugar, which we know doesn’t help with healing, because it causes inflammation. And which is described, in an article from SugarScience, the online source for authoritative sugar research University of California San Francisco as actually toxic to the liver, and in some cases more toxic that alcohol. I once counted how many grams of sugar were on a breakfast plate and it added up to 40 grams. That’s just one meal -  and they plop this down in front of patients, who are often on opiates (which can cause an increase in sugar cravings and consumption). I’m not diagnosing blame on hospitals, and I know there are initiatives that are working to improve things, and that starts by cooking real food, like this New York Times article talks about.

It certainly isn’t just a hospital problem, it’s a global problem—but we have to try to find a better way for patients. It does them a disservice to think of food as an afterthought in the process of healing. I know from my own experience that I had to look for outside help to heal through nutrition beyond what the standard diet guidelines suggested, and that after chronic use of opiates over the course of two years, my sugar cravings were and still sometimes are off the charts. I don’t know what the solution is - but considering how much money passes through the doors of those institutions, there has to be a better way. For patients, I think the best thing is to order as many of the fruits and vegetables that are available to you, avoid all the sugary drinks that are offered and eat the meat sparingly (or hope that you’re at one of the hospitals that are working to change things). That was my tactic, as well as asking all the people in my life to bring me food and always keeping snacks by my side. But it took me a long time to realize this, and it wasn’t until my third stay that I made sure I had other options. Either way, I was hungry for the better part of two years—and not just as a result of hospital food. That’s just what happens when you’re really, really sick.