the day before

We didn’t even make it to the hotel without some minor crises: Ditzy D spilled coffee all over herself before we got on the train, Treasurer nearly lost a leg when the taxi pulled off as she was getting in, and Chairperson was so heavily laden with posters, leaflets and tshirts that we feared she may drop some of the sparkly stuff.

Probably because Chairperson and I had been supremely annoying in the build up to the conference, our offers of help for the afternoon set up were politely declined. This provided an excellent opportunity for window shopping or a pre party bath and snooze. (I’d hoped for the former, but enjoyed the latter.)

We had our charity first birthday party- cake, sparkles and giggling- a happy half hour of silliness before we went downstairs for grown up mingling.




Downstairs, it felt a bit like being at a family wedding- I knew some people but wanted to get to know the others; we have the same issues and concerns and will maybe know each other for years after this.

I met Jamie, featured in this video, who lives with Ehlers- Danlos Syndrome. The film is informative, but I learned much more about him, his world, and the impact of his condition, as we blathered in the bar for a bit.


Doesn’t the valuable stuff often happen round the edges? Away from the pomp and formality, where we’re relaxed and informal.

Luckily, unlike some weddings, nobody lost the run of themselves and all went to bed at a reasonable hour.

We volunteers are professional after all.

16 thoughts on “the day before

  1. I just watched the video. I wish I could say to Jamie and his Mum and Dad what I feel (and the others in the video too) Hang in there, I see the courage it takes, and keep telling us about it. We just might have a truly brave new world one day. And Speccy, how is it you can make me laugh even when I am near to tears – you are brilliant.

    1. Jamie had to go to hospital after the event- so many folk had been shaking his hand, he’d dislocated his shoulder. Again.
      Thank you for your kind words Elspeth, I’m glad I can find the humour 🙂

  2. Because of the video that I was almost too afraid to watch–emotionally fragile–I was able to pass on the info to another blogger who has suffered for years.

    Which then makes it so true that we in the trenches are the experts and should keep talking. There will be someone else who needs to hear what we (you!) have to say.

    So, thank you once again for saying your piece/peace. –Laurel

    1. Laurel, thank you for sharing. We all need connections and to know that we’re not alone in dealing with these issues. I ramble on because I need to, and I hope it makes a difference to somebody.

      1. Speccy, it was my pleasure to share. The blogger tells me she watched the whole video, and was well acquainted with Ehlers-Danlos Syndrome (unfortunately). Look at you– **really** crossing borders and oceans!

        1. Now you have me thinking… Dangerous.
          Some day when I’m coherent I must organise the blog a bit- I’ve shared a few videos over the time, but I won’t have a category or anything useful. The blog will be 2 very soon, maybe I should treat it to a structure or some method of finding things? Hmmmm.
          Both my ability to plan and my tech ability are slim, so nothing may happen quickly, but it’s a good thought. Thank you for the spark!

          1. oooo, we like a bit of danger! <:-D

            Since you appear to be a font of information, your blog is a go-to place, so I can see why you want to add categories. That can be tedious, but there is a shortcut to adding categories and tags quickly to posts. Ask me any ole time and I'll guide you, Speccy.

            (I forgot to mention that the blogger lives here in the US.)

    1. Would you stick with it if it was all solemn and worthy and ‘feel sorry for us’? I want to feel like I’m doing something that is both useful and good for me. I’ve got a whole new group of friends now- people who talk my language and can still relax and laugh- you’re one of them!

  3. One of the shortcomings with speaking to you through a blog platform is that words can come across as insincere. We tend to be polite people, most of us! 🙂 But I really do admire the work you’re doing. It isn’t easy to volunteer in even a much less pressured atmosphere, and no one would think poorly of you for not being able to pull yourself up to perform at this level of giving and compassion. Yet you do, and I admire that. It is the people and conversation “around the edges” that so often makes a difference. I like to think that those of us out here are your cheer squad, and that you can feel our encouragement and take it as a little bit of “oomph” towards such an important work. I’m so glad it went well, and hope that now you can find a little rest. oxo

    1. I’m entertained by the thought of bloggy buddies as cheerleaders 🙂 Thank you, Debra, I know the support is there. I just can’t imagine what colour the uniform will be…

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