I have never been very good at attempting to write things that will be around after I have passed, things that I want to tell my family and friends all of the stuff I never found the words to say to them. Yesterday was no different, but I got a lot further than I ever have before.
“Are you getting yourself all upset? Are you writing a letter?” My mother asks as I pause to think again and lift my pen from the page. I nod. I sort of am. “Make bullet points first if you can’t think what to say, outlining everything that has happened in the past few days.” I look up at her,
Do I tell her?
“It’s not a letter to the hospital, it’s what I’d like someone to read out at my funeral.” Well that answers that question, apparently yes, we will tell her. We are finally going to… Talk… About my health? This is the attempt to talk about it where we will actually have a (very brief) conversation without any… Frustration thrown at me? This is weird, but I also kind of want to celebrate the occasion. We are talking about it. Wow. She looks at me like I’ve made a sick joke and tells me not to be so dramatic, that I don’t have a terminal illness and I’m being ridiculous. I realise I haven’t had the difficult conversations with her. I realise I haven’t told her how many people have told me just how serious things are and for how long I have been dancing with the grim reaper, had him watching over me. She is approachable today. She’s been off work because she does, as I suspected the other day, have an inner ear infection (which is making her so dizzy she can’t really walk in a straight line). She seems to think this is comparable to my most recent health hiccup, because in her mind she thought she was dying at one point (to be honest so did I, the state I found her in was quite terrifying), and that this is the same thing as actually almost running away with the grim reaper, as I did. Anyway…
I realise that I’ve had months to slowly process everything and stamp down the emotional response that happened. It is old news to me, this possibility, hence why reaching 20 was such an achievement (when doctors in A&E keep you in resus because you’re too unstable to move anywhere, and tell you that you “won’t survive this situation again”, and then nobody has any idea how to stop it and you know it is coming round to call you again and previous episodes happened weeks apart… You kind of meet your mortality in a boxing ring and it beats you black and blue). And in fact… It should be old news to her. She is a health professional, she knows the situations I end up in could take my life if left even a few hours longer. She seems to live in the same denial I have been. I didn’t want to burst that bubble.
“Do you seriously feel like that? Like you’re going to die?” She sounds angry, her tone tells me she still thinks I am over exaggerating. I can’t tell her that I don’t think it. I can’t tell her that I was very seriously sat down and told to think about the possibility that a medical emergency that we keep trying and failing to prevent has more than ample power to take my life in a short space of time, and that just because I have cheated death a lot and wriggled from his clutches many times before, does not mean that I will continue to do so.
(“Every time could be that final time. You need to understand that.” One doctor told me very recently, “I’ve watched people die of this. I’ve seen people die when we start treating this and get it wrong. You think you are twenty and it won’t happen” I was 19 and someone just like you told me it would, told me the next time would be the last, “but what if this ridiculous luck you seem to possess runs out? You’re much better than I expected you to be when I look at all your bloods, and we’re treating this now, but young bodies compensate until they simply can’t any more. Who knows when that will be? Who knows if we can save you then? What if you’d got to us half an hour later? You’ve been unconscious I’m sure. You need to understand how serious this situation is, I think you are owed a true understanding of how dangerous the cycle of your current health situation is.” I would also like to point out that this was not a helpful conversation, but couldn’t actually scare me because I’d already had conversations like it multiple times before, and the doctor who could possibly have intervened was unwilling to do so at that stage. I accepted that everyone was going to be right at first, that the next time would be the last. And then it wasn’t. They still keep having conversations like this with me, even a couple of days ago. And so far they have been wrong. She doesn’t need to worry about that).
“It’s what everyone keeps telling me.” Oh. So we are going to worry her with that. I don’t tell her how many times doctors have told me that the next emergency will be the last. I like the Russian roulette analogy the nurse gave me, and I use it again (I’m beginning to wonder if there are any bullets in the gun, but also convinced there’s one in every chamber all at the same time to be honest). Instantly I try to play everything down and reassure her, and this seems to prevent any emotional reaction, “I think doctors say it to try and make me grasp the severity of the situation, but I keep being told over and over that they’ve seen people die of the situations I end up in, that I’m too lucky, that my luck will run out soon and this is more and more likely to… Kill.” I tell her. I don’t say that if this cycle continues it isn’t a question of if but a question of when, and that the uncertainty of when the next time will be (and if it really will be the last) occasionally stresses me out beyond belief (but with a new surgery London think they may be able to stop this downward spiral/ cycle thing so there is hope where there was none… I just hope it happens soon if it is going to at all). She doesn’t react how I expected her to (I’m not sure how I expected her to react, but it certainly wasn’t to start vacuuming the rug as she had been about to do when she started speaking to me).
She was different, this time. No shouting, no intense frustration (ok she got a little annoyed at me but I calmly fixed that with a couple of words which I can’t remember) no guilt, no shame, no making me feel bad or taking out her frustrations on me. No shouting that she couldn’t do it any more or couldn’t cope (as is how I think most people would react), she didn’t break… She talked. Briefly, we talked. Which is momentous, because we don’t really talk (I am an island at the moment). I pushed it no further. I moved on to trying to pick a name for my t-shirt business thing that I want to start (all the ones I thought of before were taken), eventually I found one I can use… I think. My mum continued her unsteady, dizzy attempt at housework (there’s no way she could deliver a baby or drive a car in such a state) and watched TV with my little brother. Then she emailed one of my consultants, asking stuff.
Writing it now, I realise I haven’t really told her at all.
I have not shared with her the weight of the wait.
But I came as close as I will ever get.