In the last few weeks I have had some amazing messages both here and on Twitter, I know it might seem odd for someone who can sit here and pour out page after page about everything from the physical to the emotional, that I honestly never know how to answer them. It is one of the problems that I have battled with for a really long time and I guess it has to do with two issues, the first being that it is something like having a conversation. For too many years the only people I speak to regularly is Adam, Teressa and my friend Jake, outside of that I rarely talk to anyone, partly because there is no one else out there that ever calls me and waiting for me to call is like waiting for hell to freeze, it just won’t happen. I don’t not phone people out of rudeness, but because I either don’t even think about it, or if I do I forget as quickly, or for the biggest reason of all, I have nothing to say that they haven’t heard already and I never actually talk about what is going on with my health with anyone unless I am pushed. Talking to stranger is even worse as I get myself in a knot between my brain not giving me words, stuttering and worse still I totally forget why I wanted to speak to them in the first place. Recently Adam has taken over anything phone based for me, but that clearly doesn’t explain why I can’t type a reply, other than the mental connection of conversation.
One of the things that I find so difficult is the fact everyone is being so nice to me and praising me for what I see as nothing, all I do here and on Twitter is to be me. Praise in any form, doesn’t sit easy with me and replying beyond a stuttered thank you, is impossible. That has nothing to do with my health, although I would say that it has got worse over the last few years, no that has to do with the first half of my life, when I heard nothing that ever even sounded like praise, no matter what, I was always in the wrong. I do find the written word easier than face to face conversation in the respect that I can read it back before I send it, but I have more than once discovered that people don’t take what I say in the way that I mean it, both spoken and written. When I write my posts it is a little like writing to me, I don’t really think deeply about it in any way, what falls out of my head can be just as much of a surprise to me as it is to others, but when I direct that at another person, it seems to fall apart. These days I spend 10 minutes just thinking of how to answer a tweet, without it sounding patronising, pitying or sickly sweet and that is only a max of a 140 character. Ask me a question and I have no problem, say something nice, or tell my your story and I suddenly seem to freeze, so scared of saying the wrong thing. The worst thing is, I so love hearing about other people and I hugely appreciate that someone who doesn’t really know me outside my words, cares enough to even send me two words, yet how to reply is this huge ball of stress that scares the hell out of me.
Life, compounded by brain damage, has turned anything that is even close to social interaction more than just hard, it’s often impossible. When things are bad for me, I can’t even talk to Adam outside of passing comments and that is when I pour things out here, as at least he can read them and find out how his wife is. Yet again my brain has poured out what has turned out to be a complete post, when it was meant only to produce the first paragraph. All I really wanted to say was thank you, to all of you who remind me I am still human and an apology for my remiss in not truly replying as one. Another problem with replying, I think has just been made clear, I ramble on.
This may not be what I intended to write but that is the way with the truth, it just has to be heard in full, as without the detail, it can sound like nothing other than an excuse. When your brain is no longer the way it was and you know that, it is often hard to do what is right at the right time. Every day I read every tweet that was sent to me in the past 24 hours, I search through them for questions or words that make it easy for me to show I am here and I am hearing all of you, some days it is easier than others, some days it is impossible, but it doesn’t mean I don’t care, just that I am locked inside somewhere observing, reading, enjoying, sympathising and empathising, just not capable right then of reaching back. I used to think that being housebound would be the thing that would limit me, but it hasn’t been, I have shouted and shoved my way into the worlds of so many people, some for a short time, others for years now, but there is a limit that I can’t escape and that is the one my brain is building bigger and stronger over time, slowly it is closing down my ability to truly interact, I am just grateful that I can at least express myself and talk here, to anyone who wants to hear me.
Please read my blog from 2 years ago today – 05/01/13 – New leg please!
Makes sense to me! I actually shared this with some peoole I am close to, as you explained better than I ever could. It breaks my heart when I am misunderstood and people I care about do not realize how much I love and appreciate them. I must use my energy differently. Writing is completely different than speaking!
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