....tae see irselves as ithers see us.
I have become increasingly aware of something that makes me quite unhappy. More and more I'm feeling defined by my illnesses. This might well be considered perfectly normal for someone that has been really quite ill for 9 out of the last 15 years but I had always hoped to avoid becoming so tunnel visioned about it. I am so much more than just a cancer or transplant patient so why has it become so pervasive?
Partly it is because almost every visitor I have firstly wants to talk about where things are so I spend a good chunk of my time thinking about exactly that and how I am coping. Deep down I know it's not just that though.
I'm forever pointing people to newspaper articles or tv shows that relate to cancer, especially blood cancers, or transplant related stuff. It's with an almost evangelical zeal that I do this. Of course I fully expect the response to be that it's only natural to be like that but it's recently come to my attention that a lot of folks avoid it all because it's a bit too close to home. Even talking to other patients they've said to me that they don't watch anything related to their condition, and even feel a bit off if there's some tangential reference to it in a work of fiction.
It's almost embarrassing to admit but I hadn't even considered that this was possible. I devour everything I can relating to my own condition and hope that others do too in the hope that they might understand things a bit more, or in my own case to feel something positive about shared experience. To learn that there are people who just want to put that period of their life in a box and forget about it hadn't even occurred to me.
Of course, there is the difference that I am still living it and you could argue that it's perfectly understandable that I would immerse myself in things that resonate with my own experience. That I choose to share all this stuff with others comes mostly from the noble place that if I can get more awareness of transplants of all types then I have done some good. Again though, I have to admit that's not the whole story, I don't think.
I've been out and about with friends a lot more recently because I've been well and I've caught myself basically listening to them only waiting for an opportunity to pivot the conversation back to me. I hate myself for it but I can't seem to stop it. I've always maintained that I want to hear about my visitors' lives more than talk about my own because 'real' life is far more interesting and up until recently that's genuinely been true. I even used to have a little speech about where we were at a given point regarding the lung transplant that I could rattle off in about ten minutes so that we could then talk about other stuff. Something's changed though and I'm not quite sure yet what it is.
Before I go trying to work that out though I have an admission to make. I think that my Leukaemia and subsequent lung failure make me a much more interesting person. Now that's not to say that I don't have any other strings to my bow, as I'm sure any number of people who knew me before those diseases (or even in between them) could ratify, but they have certainly made my life the road less travelled and there is a part of me that thinks that surviving it all is incredibly impressive. This is the sort of thing my closest friends and I would joke about, like how I can't actually be killed by conventional means. This has though had the side effect of me lauding it to others like it's the thing I'm most proud of. It worries me that that's kind of true though. Whilst I don't seek admiration for how I've coped I certainly love getting it.
Another thing that I've been poring over is that it's genuinely embarrassing to think how little time it takes before I'm introduced to someone before they know my whole life story.
That, of course, is triggered by curiosity because of my oxygen tubes in my nose and the wheelchair. People are just intrigued to know what has led me to this position. It's something I can explain relatively quickly, like when I needed to explain to the tattooists how none of my back story would be a reason for them not to tattoo me (like if I was immunosuppressed for example) but just because I can do it doesn't mean I always do. I can be guilty of really holding court when it comes to talking about myself and it's definitely not an admirable trait.
What I was saying about loving admiration for the way I've reacted to my condition, while true, is partly because people are so quick to offer it. I do always tell people though that if they were in a similar condition they'd cope better than they think they would, which always seems to be their starting point. Few seem to believe that they'd cope well with being ill. I was always more worried about those closest to me to worry about myself but something has definitely changed there, and this is perhaps the crux of why I'm beating myself up.
The passage of time I feel is getting to me. 7 years without a decent breath and 4 years staring at a phone will eventually break even the strongest of wills. Now, I'm not falling apart. On most days I am still just the smug arsehole that I've always been but I guess the point of this whole ramble is that I'm asking people to consider that there might be days now where I'm not coping as well as I have done previously.
To say it's asking permission to feel sorry for myself isn't quite right but neither is it that far off the mark either.
Having written that I suddenly realise that everyone will understand that because I am surrounded by an absolutely incredible support network. I don't know either way whether my response to my initial diagnosis set the tone for how my team are around me reacted or whether it was their almost total irreverence that allowed me to only take it as seriously as I needed to. I'm personally a lot more reverent when it comes to my situation now because it is, as I've mentioned in previous posts, a progressive condition. That scares me and it's not something I'm very familiar with as a feeling.
So, if you have been in my company recently and ever thought that, even by Paul's standards, he's talking about himself a lot I think it's because I'm scared that the call won't come; that this will be my legacy.
What I was saying about loving admiration for the way I've reacted to my condition, while true, is partly because people are so quick to offer it. I do always tell people though that if they were in a similar condition they'd cope better than they think they would, which always seems to be their starting point. Few seem to believe that they'd cope well with being ill. I was always more worried about those closest to me to worry about myself but something has definitely changed there, and this is perhaps the crux of why I'm beating myself up.
The passage of time I feel is getting to me. 7 years without a decent breath and 4 years staring at a phone will eventually break even the strongest of wills. Now, I'm not falling apart. On most days I am still just the smug arsehole that I've always been but I guess the point of this whole ramble is that I'm asking people to consider that there might be days now where I'm not coping as well as I have done previously.
To say it's asking permission to feel sorry for myself isn't quite right but neither is it that far off the mark either.
Having written that I suddenly realise that everyone will understand that because I am surrounded by an absolutely incredible support network. I don't know either way whether my response to my initial diagnosis set the tone for how my team are around me reacted or whether it was their almost total irreverence that allowed me to only take it as seriously as I needed to. I'm personally a lot more reverent when it comes to my situation now because it is, as I've mentioned in previous posts, a progressive condition. That scares me and it's not something I'm very familiar with as a feeling.
So, if you have been in my company recently and ever thought that, even by Paul's standards, he's talking about himself a lot I think it's because I'm scared that the call won't come; that this will be my legacy.
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