Today, A and I went to sainsburys. It was fairly empty in there, which always makes me a tad more self conscious anyway for the strange logic that I feel if there are less people around the people that are there are more likely to hone in on me. Having selected all the necessities – trifle, hundreds and thousands (known to me as sweetiebobbles but I am trying to get out of that habit after asking A to buy me some more and he went and asked a sales assistant if they stocked sweetiebobbles which naturally was met with some baffled amusement and I was in serious trouble) ice-cream etc, we were queuing up at the till. As we placed our basket, the lady asked cheerfully how we were so we both smiled and exchanged plesentaries. I was absent-mindedly reading the cigarette packets (not much else to look at) when I heard the lady say “what’s wrong with her?” I turned to see who she meant and realised she was asking about me. Slightly stunned, A said “pardon?” and she said “is she ok” to which he turned to me somewhat thrown and said “are you ok?” it was like something out of a Monty Python sketch. I was actually pretty embarrassed and said loudly “yes I’m fine I am waiting for a transplant” which a) was a contradiction in one sentence and b)was slightly unnecessary but did shut the woman up.
Usually I would laugh about these things, but for some reason this did quite get to me this evening. I just felt a little sad of the reminder that of course people will wonder “what’s wrong with her” when they see me, unless that is of course they are used to people wearing plastic tubing up their nostrils.
I have just read Gloria Hunniford’s book “Next to you - Caron’s courage “ about her daughter’s battle to cancer, which she eventually lost. Obviously a completely different scenario to my current situation, but it was interesting reading about the way she dealt and lived with her illness. One thing that particularly struck me was her determination to keep it a secret. Her mother muses over various reasons, all of which sound highly plausible to me as they are similar to my own drive for coping with transplant and things the way I do, which is to tell anyone and everyone about it. I think it is almost me trying to trip up my illness and say “ha, see you can’t create a taboo or an underlying fear, this is all out in the open and just a part of my life”. So I talk about it. A lot I suppose, but interestingly for similar reasons as one might hide it it seems, being that I don’t want it to become a big thing. Well it is a big thing (stupid comment) but bigger than it has to be. Obviously the hiding it option was rather irradicated when I started wearing O2 24/7, but I think that is why I push myself, wear O2 on TV and go to pubs and things, it’s almost like that behaviourist therapy which resulted in a psychologist taking a patient of his who had an irrational fear of cars, locking her in the boot and driving around for a couple of hours until her hysteria had died down. Perhaps not very ethical, but it worked.
There doesn’t appear to be any point to this blog, more just I needed to vent and spill my thoughts, which would in fact be the point of a blog then. Oh be quiet Em.
Organ donation week
2 weeks ago