The doctors come and go and tell you, “well you’re the expert” and the comi-tragic thing is, you really are. Most of these doctors have never seen what you have, many will have never even read its name. You spend long hours combing the Internet for medical breakthroughs and longer hours getting thoroughly terrified and depressed in patient forums. I’ll advise you now, stay away from those forums, they are a spiral of doom and destruction waiting to happen. You know words you never knew existed and treatments you never imagined did. They bring swarms of baby doctors round to visit because you’re an “interesting case” and they’re so eager it’s a palpable force. There are many words you’d use to describe what it’s like but interesting isn’t one of them. You have the same poison that they use to stop a death-row-heart flowing into your veins and they’re asking you so many questions your head starts spinning. Maybe for these doctors knowing the Latin name for something makes it harder to feel its weight. The opposite is true for you; the longer the name, the heavier it feels. But there are many wonderful, empathetic, compassionate doctors. Ones you feel that familiar pricking at the back of your eyes around. Who tell you, “it must be tough” with that particular tone, that cadence vets use to calm skittish animals. It is tough, you want to answer. You want to shout it sometimes. You want to scream it. You want to whisper it in the dead of night under the blankets. But you are tough; you’re too sick to be anything else.
The doctors are often the only ones who laugh at your black humour. They’re an easy crowd; white coats chuckling as you banter about bowel movements. Every consultation is an opportunity to test new material and if some of their amusement is tinged with relief that you’re not making it hard on them, you’ll still take it. Your friends and family don’t appreciate them. Your mum visibly cringes when you crack a joke about dying. Your best friend asks you not to talk like that anymore. You understand, but you also still think you’re funny. And you tell your jokes to yourself under your breath and smile. Being sick is kind of like being a part of a minority group. You can make all the jokes you like about illness because you’re in the club. It’s a pretty exclusive club. If you’re not sick you can’t make jokes about it. And if you are sick, nobody really wants to hear them.
There are far too many mysteries unsolved in a hospital ward, it’s a veritable Agatha Christie. What happened to that woman who shouts all the time? What exactly do they put in that suspicious casserole? Why do they believe curtains suddenly become soundproof booths when they are pulled close? How much do you need to know about the colour, texture and frequency of your neighbour’s “movements”? What secret evil creature creates that peculiar sound in that man’s throat as he hoiks? These mysteries are added to your own list of unanswered questions. And you are acutely aware of how intimately you know the faceless strangers in the cubicles beside you. You hope they remain faceless, and in the occasional, regrettable, and awkward moments when you do bump into each other on the way to the tea station, you ever-so-politely pretend you haven’t a detailed knowledge of their excrement.
You find, like your nurses, who are now also your friends, that your fascination with unmentionable things grows. And you get delivered the choicest stories to giggle over between obs checks and drip changes. You are alternatively appalled and amused by the various code names for various patients and procedures and if you ever want to win a gross-out competition you’ve got a winner in the ‘waffle-stomper’. You can no longer muster up a shudder or pretend disgust for bodily fluids; they are an inevitable part of your treatment and therefore your life. And you can happily and cheerily chat your way through a needle stabbing into your chest with some force. It’s so much better this way, you comfort your shocked visitors. It’s so much faster. They turn away when the blood gushes into the tube but you always watch and cheer when it flows easily.
You write a list on the back of your bandage. Things to celebrate: falling asleep before midnight, an extra day out of hospital, blood on the first go, a week without fainting, no further damage, only a small deterioration, a trip away without incident, the scars will be as small as possible. Light a candle and stick it in a cake.
When you go begin the transplant process you have a number of long consultations. You sit in a series of rooms, seeing a series of doctors, listening to symptoms and side effects and procedures and risks. Six hours later you stumble out of the corridor, blinking against the fading light of the day. There is so much information. There is too much information. It comes at you like ammunition,volley after volley, without pause. And yet, when you call your family and try to tell them what happened, they ask questions you can’t answer. They want information you didn’t manage to get. Why didn’t you think of those questions? Why can’t you remember everything they told you? Inevitably, in the car, on the long drive home, you cry. Even though you’re happy to have hope; to have a plan; to have a future. You don’t want to go back, to stay still even, you want to jump feet first into the future. Only it’s like jumping into an ice-cold pool. It’s shocking. It’s numbing. It’s painful. It makes your blood race through your veins and your heart thud in your chest.
You are holding your breath. You are waiting to come up for air.
Lightly, Lightly 