Wednesday, 13 July 2016

You're Only Allowed to Die With A Smile On Your Face

So this is something that's really pissing me off lately. I guess it has become more of a prevalent topic for me to notice, and in turn analyse since I went active on the transplant list nearly a whole year ago (!) and it seems to be an issue that is constantly reoccurring. In a nutshell, it seems that you're only allowed to die if you're doing it in a super positive way. What do I mean? Let me go back to the beginning. I've always known that death was an intrinsic part of having Cystic Fibrosis. I think I was first exposed to it when I transferred from paediatric care to adult care at around the age of 16. Before that if you were in hospital and someone that you knew had passed away you were merely told that they had 'gone home' which I completely understand as it's really hard broaching the topic of death and mortality to a bunch of kids who spend long periods of time in hospital with as vicious a disease as CF. I think the first couple of times that I experienced death during the early years of my stay at my adult CF unit it was through conversation with other patients, some of them had lost siblings or other friends and it just kind of came out in conversation during the many late nights when we were all allowed to mix. I remember that it was generally just accepted by the hedonistic group of patients that I fitted in with who used to make their hospital stays as enjoyable as possible via whatever means that they could, none of which I can go into here as my lips are forever sealed. Let's just say that you wouldn't believe some of the stuff that we used to get up to. I just fitted into that mindset and attitude to life perfectly as it reflected my own personality and beliefs of just getting on with it and trying to enjoy every iota of being alive that I could, for as long as I could. There were other groups of patients at the unit who were insular, or complained about every aspect of hospital life and having CF and I just couldn't be arsed with those types, I still can't to this day so that's something that hasn't changed at all. People LOVE to complain, and some poorly people LOVE to complain a lot. Personally, I see those types as whiny cunts. Just my opinion. I don't think I every sat there thinking, ''oh shit, I'm actually going to die from CF one day'' as we all used to take the piss and mock it all, even death which is where my sick and un pc sense of humour developed. A lot of people with CF have this and I 100% believe that it has saved my life and their lives countless times. It's true that if you can crack a joke in the darkest of hours then you can pretty much get through everything. That's not to say that it doesn't take it's toll on you, believe me it does but it helps, it really helps as an outlet so you can release some stress and then refocus on making sure that you don't join the rest of the fallen. Well, try your best not to anyhow. One memory that does stand out from my formative years in hospital was when I needed a course of treatment and there wasn't any beds free on my specialist CF unit so I was given a bed on the outlier ward until one came up. This was probably the first time that I was properly exposed to death. One night I needed the toilet which was situated at each end of the ward so I left my room in the early hours and slowly walked down the ward glimpsing into each room as I passed. You'd often see some sights like old people crapping on the floor right next to their commodes, generally not giving a fuck and undertaking some kind of dirty protest at the fact that they didn't want to be there even if it was for the good of their own health. One even escaped once to buy some fish fingers in the local town centre and was brought back in their pajamas by the police but that's a whole other story to tell. Anyways, where was I? Oh yeah, so as I walked down to the toilet I looked into one room and saw a person with the sheet pulled right over them, I'd seen enough horror films to realise that they were dead and I felt a chill down my spine and just thought, ''oh fuck'' and nothing particularly profound. The worst bit was that their arm wasn't completely covered by the sheet and was slightly hanging out of the bed. Like I said I had seen enough horror films so rushed to the toilet and completed the quickest late night piss that I've ever had in my life whilst also trying hard to not shit myself and looking around in case some kind of pensioner zombie rolled up and attempted to bite my increasingly shrinking dick off. It wasn't a nice feeling at all. It was the reality that there was an actual bona fide dead body a few rooms away from me. It was chilling. I went back to my room and just thought about it logically for a bit, I was on a ward of predominantly old people and old people died. It was as simple as that for me. A few admissions later I was again on the outlier ward but had taken a stroll up to my unit to use the dayroom facilities that we had and shoot some pool. As I was waiting for the security door to open a trolley came out being pushed by a porter with a body bag on it, again covered by a sheet and again chilling me to the bone. I guess it was just unfortunate timing as I know that hospitals generally try to move the bodies of people who have passed during quieter times to cut down on these kind of incidents but it was around mid day and there wasn't really anything that they could do. I felt slightly different than I did about the old person passing away on the outlier ward as this was someone else with CF, a fellow patient, not one that I was close to thankfully but still someone with CF was dead and their lifeless body had just been wheeled right past me. The worst bit was seeing the sadness and pain on the faces of the staff as they are often all so super professional I had seen the real impact on them of doing such a difficult job as working on a specialist CF unit where unfortunately death was par for the course as part of the disease. I reckon those two experiences and the people that I had become friends with on the unit shaped my mindset of, ''well, there's not much that I can do so fuck it. I'll do my treatments, kick arse and see what happens'' which is all I could do really. I think I owe a lot of my mindset to how I was brought up too. My mother never really made a fuss of me having CF which helped loads, not in a bad way but I never used it as an excuse, or to think that I should be treated differently because I had it like LOADS of people with CF do these days. There's the whole 'i'm a precious little snowflake' mindset within a lot of people these days which I find nauseating, attention seeking and quite cunty to be honest. Back to this death thing then, over the following years as I grew up into adulthood I lost a lot of friends and fellow patients in hospital, 100s of them to be honest so death and dying became a really normal part of life for me. I think part of the problem is that most normal people lose an elderly relative, or a parent during the course of their life whereas a lot of people with CF lose countless people. These people are often the only ones who have any kind of insight into what living with the disease is truly like and so your mortality is constantly reflected back onto you. the unpredictability of CF is paramount to shaping your viewpoint of death as you could leave a friend in relatively good health after one admission only to return a few months later and find out that they've passed away after a particularly bad infection. The foundations with which you view life, death and everything are built on quicksand, often suddenly changing and reforming as a new landscape which you have to relearn how to navigate in order to keep sane. Unfortunately, there's nothing that you can do about your CF friends dying. One of my CF psychologists theorised that I subconsciously accepted this and just decided to get on with it all. I found myself over the years becoming numb to it happening as the group of friends that I made when I first joined the adult unit at 16 dwindled and dwindled. I guess I probably did it to survive as you can't let yourself get caught up in the emotion and upset of it all, being that it happens with such frequency that at times you'd be losing friends every couple of months. You have to put yourself first to survive so that's pretty much what I did. I'm nearly 38 now and I can probably name on one hand how many long term CF friends I have left that I've met and known since I was 16. I recently lost one of my oldest friends of 20 years and it crushed me but there's not many left at all now. Fast forward to the original point of this blog now though. When I was put on the active transplant list I let everyone know that this was the point of no return just as I always had as I've always tried my best to present an open and honest picture of what life with Cystic Fibrosis is like. I've never done this for myself, I've wanted to be as open and honest as possible to help others understand but I fear not many people got the memo on that one. I see a lot of people posting things on social media and a lot of their stories are ridiculously over the top and nauseatingly positive about end stage Cystic Fibrosis and being on the transplant list. It generally feels like nobody has the balls to show the real, hard hitting side and I find that incredibly frustrating and, if I'm being honest, a little bit cowardly too. End stage isn't called end stage because it's a fluffy part of life that is filled with rainbows and puppy dog tails. It's called end stage because if you don't get a transplant then you're going to fucking die. Simple as that. It's the cold hard truth and the clock is ticking. And yet, nobody really wants to talk about it or engage with you on the subject or even the fact that you have to consider your mortality now every single day. That seems wrong to me, yes? You even get the charities and organisations that are supposed to be there to support you ignoring or shying away from the subject. Again, that's wrong in my book. To ignore, or shy away from death is to ignore those of us fighting so incredibly hard every day to make it when the chances are stacked against us, like really fucking stacked against us too. Nobody wants to talk to you about how you're feeling about how long you may have left, or how incredibly hard it is for you and your loved ones every single day, nor the incredibly strain on your mental health, major depression and incredibly high levels of stress that are constant and a huge drain on you on top of an already gruelling regime that you're forced into. In the last year or so I've had to do a lot of deadwood clearing of people from my personal life, I can't afford to have shit people in it anymore so I've culled quite a few people for very good reasons but still a lot of people just don't get it. Not many people call or text anymore to see how you are, people seem to just assume that if you're showing a presence on social media then you're ok which really couldn't be further from the truth. I can totally understand people being upset by what's happening but really if you stand back and look at things, shouldn't the focus be on helping the person with the illness who is dying and not pandering to the feelings of those who don't have it that can go home and forget about it at the end of the day? You don't get a break from things at this point, the treatment burden is massive and all consuming running your life from morning until night. Inevitably you're left alone, or with very few people to be able to talk to about end stage life. It's made even harder by the fact that not many people make it to transplant stage or through one so there's not many others that can offer an understanding opinion on things and some empathy. There's no room for excuses anymore though. As a society we are fundamentally failing not just people with Cystic Fibrosis at end stage but also anyone who is faced with the end of their life. It's staggering to me that we spend so much time and effort of bringing people into this world but really seem to not give a flying fuck about those of us on our way out. We're all going to die too so just why is it that people can't man up and discuss death in a mature and understanding way? There are so many people suffering alone and things REALLY need to change. Fuck the overly positive people too, you're not helping anyone and you're lying to yourself living in cloud cuckoo land. NOBODY is super dooper positive 24/7 when they can't even breathe whilst having a poo. They're just not. I'm not saying be a miserable fuck about things if you're at end stage but at least be honest, and don't be scared of being REAL about it all. It's such a headfuck and emotional nightmare that people need to know. Since I've started speaking out about this I've had so many people tell me that they agree but they have no voice or representation. A lot of CF parents have said that they fully want to know what to expect in the future if things don't work out so the fact that The CF Trust and other organisations seem to focus solely on the young and not being more honest about end stage because they don't want to upset the CF parents is not cutting the mustard with me. As a community we're shite at supporting adults and those at end stage and it has to stop. I guess what I'm saying is that it is completely legitimate to be realistic and show just how awful things are at this point and I find it offensive that there's a real, palatable feeling off 'ooh, that's a bit grim let's ignore it and focus on being super happy alllll the time'. Case in point, when my close friend passed away recently the church was packed with people crying their eyes out at her passing. For the last two years of her life when she was isolated at home distressed very, very few of them made the effort to be there and visit. It disgusts me that this is a common occurrence. I'm living it myself so I know what I'm saying is true, In my opinion being like that doesn't help anyone at all. Awareness covers ALL aspects of life and death so let's start doing something about the latter. Talk about this shit, show people that you care and get involved with them - they might not be here for much longer and you'll only regret it when they're not. Peace out and don't die. Andy.

7 comments:

  1. Andy - thank you so much for writing this blog...this 'fluffy' approach is like a sickness in our society throughout the life cycle and causes so much isolation and loneliness: everything from painting end stage life to how labour should be (not comparing the two of course), Christmas being a happy family time and so on: in my clinics at least I am on a MISSION to keep things real, I embrace imperfection and don't pussy foot around. Is there a way to start an end stage branch of the CF charity? Has anyone from the charity seen this blog? I'm happy to send on etc and help where I can. I love you very much and still so sad I couldn't see you after my peaks climb. Love and hugs xxx

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  2. I agree with soooo much but there is another side....a lot less fluffy... Myvson couldn't tolerate the attention at the end! I think he felt he needed to be 'on' when his friends & family cane by. At the end he requested everyone to just go away! His concentration on breathing took precedence over interaction or even the presence of others!! He died in my arms at home with three others...whom were there for me, I believe !!!! It was how it was supposedly be for him!! Loves

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  3. good post. I agree with you. I don't have CF but have a few rare diseases that put people at end stage and as an end stage "lungie" I really relate to what you have written. You're right. Very few can and will be open about death, all of it. I try to talk about it in my blog some but it can be hard because there are certain feelings I do keep close to the vest but also because of strange reactions people have to illness in general. I'm glad you spoke out about this. It's a reality. Even though I'm listed and think I have a high chance of doing well after I know I'm not in control of the situation and it has forced me to let go of a lot of things and think about things a lot. It's not easy by any stretch. I've been near death 3 times in my life and each time I haven't been afraid to die, just afraid of what my death will do to people. I've lost friends too & it's a very hard thing. The few I had who really understood that passed I missed terribly. I hate this trend of people eulogizing people when they are gone but taking them for granted when they are here. I do try not to do that. With your permission I will link to this post if you don't mind. I think it's a worthwhile read. (ilivebreathe.com)

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  4. wow dude you so hit the nail on the head with that one. I've been saying this for years. they focus so much on us getting better and being healthy but never ever talk about us dying or the possibilities of dying. It's so taboo. On our ward they don't tell us when someone passes. It's utter bullshit. I told our social worker that they fail to realize that we ALL know each other on social media. We talk ALL the time. So hiding it and pretending it didn't happen makes it a million times worse. The docs lie to your face (i've called them our on this many times) and refuse to talk to you about anything negative, I mean come on this is MY life Our lives we are talking about. I think WE need to change the conversation and push to get things changed it's the only way we will get peace and understanding. Good luck to you on your transplant. Keep breathing. :)

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  5. Excellent Andrew. There's some UK guy who was on loose women lately and I only came across him cause I think you mentioned him. I was too sick to comment much on it at the time but the image he and the cf trust who I think were promoting him was almost pop star ish and reality TV like. Made my blood boil.

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  6. Thanks for sharing Andy! x

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