I'm still struggling to gather what I want to say about the transplant time itself but please humour me while I struggle to get it all sorted in my head. I'm always loathe to blame medications for my addled brain as I'm sure the overall trauma of the whole thing alone has been enough, but coming off the doses of opiates I have been on (as well as steroids which I think might be making me a seriously moody prick at times) hasn't been the easiest process on my brain.
I said a while back that I feared re-entry issues after 325 days of institutionalisation as an in-patient, and I think I can see the ways in which it has manifested. My mind had a lot of catching up to do with my body when things finally started going well and I don't think I coped with it as well as I could have. I now have the whiplash that I expected to show up at some point.
It's possible I'm repeating myself here but I can't be bothered going back to check. It seems that over the very nearly two decades now that I've been unwell to some level or other I have deliberately underplayed how much danger I was in at any given point. This was, to borrow from the psychologists for a second, my coping mechanism. It wasn't just to help my friends and family cope, but for me as well. That I chose to do so was a short term tactic that then became my modus operandi. Unfortunately when you choose such an approach it can lead to people not really realising when there genuinely is danger because you've spent so much time reassuring them that you'll always be fine.
Obviously that doesn't quite apply to the last year or so as it would be a real discredit to those who care for me to suggest that they didn't know how dangerous what I was undertaking was. Maybe each person's level of understanding differed but I think it's fair to say they all knew I could die at several points.
And now to the crux of things. I feel a bit lonely at times. I'm not actually very short of company but I do feel a wee bit isolated. When I stop and try and be rational about it this is almost certainly a product of being quite badly ill for most of my 30's and while all my friends were building lives and families I was being deliberately obtuse and pushing people away for fear of getting hurt myself. I absolutely do not want pity for this as it was my own doing but fucking hell it was stupid.
While my friends were building these lives they started to take on responsibilities that I never even considered and so, even though I have no doubt each of them would like to spend as much time with me as was the case back when I was diagnosed with Leukaemia, it just isn't logistically possible for them to do so. For a wee while there that was getting to me as people would have to cancel visits with little or no notice and my mind would go to dark places. Was I not worthy of their time? Were they choosing to do less depressing things instead? Then I had a Damascene moment of clarity. I'm not actually the centre of the universe.
I know, hard to fathom isn't it?
Before I got to that point though I had reached out to a few very old friends and vented my frustrations on the topic and they deserve an apology, mostly because I have no idea what was, or indeed is, going on in their lives. It was incredibly selfish of me to offload all my gripes and groans on them and I hope they understand the mitigating circumstances behind it. I'm not trying to excuse the fact I was being a bit hysterical but I was, for a while there at least, very scared about my future and I automatically went to the people I used to go to way back when. I have always preferred to go to friends than medical professionals at times like this as I've never been very well served on that front I don't feel, but it genuinely never entered my mind till recently that the burden I was maybe easing on me would then be bearing down on them, and that truly wasn't fair and I regret that now. Those who were on the receiving end will hopefully realise that I'm talking about them and take this mea culpa at face value.
For what it's worth I do feel I have turned a corner on this front recently mostly because I am strong enough now to get out and do much more. I am getting a lovely, steady stream of visitors and we are no longer restricted to sitting in my room but are getting out and about too, whether that be for meals or just down to the pub on an occasional Friday night. A lot of visitors are old school friends and becoming re-acquainted with many of them after my years moving around the country has been a bloody delight. There is always a brief period where I have to explain just what the fuck happened to get to this point but once that is out the way we have definitely reached the point where they get to talk about their lives just as much as I slabber on about mine. I think it was during one of these chats that I realised I was happier like that and not being 'the most important person in the conversation' that I started coping better.
I'll not name them but recently I met up with a few old friends that I hadn't seen in a very long time and it reminded me of a conversation I once had with a nurse about the 3 general responses you get from people, empathy, sympathy and pity. On this one day I got such a healthy dose of empathy that it really made me realise I didn't need to pretend with them on any front about what I had gone through. This empathy stemmed mostly from one person's familial experience and it allowed us to talk in the most conversational way I've managed to do so with almost anyone about some of the medical stuff outside my own family. Now obviously I would have preferred it if they had never had such experience to make these comparisons and ask such pertinent questions but I would be lying if I didn't admit it was quite liberating to. Having admitted though that I offloaded too much on some friends just a few paragraphs ago I don't want to make the same mistake and just offload on this person and possibly suffocate them. I do hope we can meet up again soon enough and continue to just chat away as it really was great.
Now I'm more comfortable with the idea that I can do much more the responsibility has shifted from other people coming to me to maybe me doing some of the stuff that I had forgotten how to do over the 8 years or so I spent in bed and show everyone that I am thankful for their roles in my life instead of focusing wrongly on whether they could have done more. It's my life and it's about time I started taking more control of it back.
I'm sure I will make plenty more mistakes over the next wee while in these attempts at my new normal but I hope everyone can see the honesty behind them.
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