I just had to post a link to Dominique's latest, rather genius post, 'A Play : Cognitive Disconnect'. It really shows what conversation is like for someone with ME ... very much what it's like for me almost every day right now!
I have the advantage that Anna is awesome at reading my mind / playing charades, and can usually guess what I'm trying to say almost straight away. I really feel for people who don't have someone to do that. It's especially helpful when she's trying to translate for someone else what I'm trying to say to them! I really needed this little bit of light relief today! Am so grateful I was able to read online for a few minutes this evening!
Of course it's a serious issue too, much as those of us who suffer from these kinds of cognitive issues make light of it. The ability to communicate is so vital for a human being - and when it's compromised, it makes life very difficult, very confusing, occasionally and potentially dangerous, and certainly very embarrassing at times!
A small snippet of Dominiques post follows ... you'll have to click through to her blog to read the rest! ;)
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I have the advantage that Anna is awesome at reading my mind / playing charades, and can usually guess what I'm trying to say almost straight away. I really feel for people who don't have someone to do that. It's especially helpful when she's trying to translate for someone else what I'm trying to say to them! I really needed this little bit of light relief today! Am so grateful I was able to read online for a few minutes this evening!
Of course it's a serious issue too, much as those of us who suffer from these kinds of cognitive issues make light of it. The ability to communicate is so vital for a human being - and when it's compromised, it makes life very difficult, very confusing, occasionally and potentially dangerous, and certainly very embarrassing at times!
A small snippet of Dominiques post follows ... you'll have to click through to her blog to read the rest! ;)
BOB: “Are you ready?”
ME: “Yes”
BOB: “So where do you need to go?”
ME: “You know. That place with all the stores in one place?”
BOB: “The Mall?”
ME: “Yeah! That’s it! I need to go to, um that store across from that burger place we like … next to um Marshalls? I think?”
BOB: “Are you talking about Ross’s?
ME: “Yup” (sigh)
BOB: “What do you need?”
ME: “Sunglasses.”
BOB: “Do you know what kind?”
ME: “Yeah. Progressive. No profective. Dang. Um … the ones that don’t let the light go through the lenses. The light bounces off the lenses. I can’t remember what their called.”
BOB: “Uh, I have no clue what you’re talking about.”
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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)
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Hi Susannah. I just read your story through Dominique's page and wanted to reach out and send a hug. My daughter is newly diagnosed with this 'thing' and I have been learning so much. My heart breaks for adults dealing with so much misinformation and lack of support. Your wonderful friend sounds a very special person indeed but in turn you must have been deserving of such support and would have done the same. Best of luck and, as a well parent of a sick child, rest assured I am doing my best, in my own small way, to raise the profile of this illness.
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