Saturday, 8 March 2014

Day 38, TEDx and This Morning

Endo 365

I am writing this blog purely because my favourite time to write is either on a plane alone on on a train on alone. There is something highly alluring to me about the solitude of travel, the space to think objectively whilst in a physical transition from departure to destination. In my little artistic brain it is like a gap in time which is separate from my life, alone to think with no distractions from your life by setting or people.

Meanwhile, In the real world, time is still on going and everybody secretly thinks Alice is a nutter.

I have been inundated with emails this week from very kind 'endosisters', mothers, husbands, siblings and friends of sufferers due to my appearance on ITV's 'This Morning' and this blog.

'This Morning' was a great experience and yes, Holly Willabooby and Scoffey are fantastic. Absolutely genuine and lovely. I could not have been better looked after and in my opinion, ITV's care is superior to the BBC...

To those of you who missed it, here is a link to my interview:

En route home having been 'Brighton Bound' (capitalisation is justified due to alliteration.. My blog my rules) having partook in a TEDX talk about, you guessed it, Endometriosis.

If you read my 'p' word' blog then I hope you may have watched Carol's TEDx talk 'Little Red Riding Hood' talking about Endo. A truly inspiration, universal, accessible, entertaining, enlightening and just amazing talk and woman. I am honoured that I was asked to conclude the her fantastic talk. The response to our talk today was overwhelming with some people telling us it was their favourite talk of the day!

I am quite a fan of TED talks because they are such a brilliant and accessible way to learn about new things, and not just in your area of interest, which I believe is important when trying to keep the brain ticking over and stimulated. As you may know, I suffer bouts of insomnia due to pain- I have learnt many a thing from late night TED watching. I profess it is all usually in my familiar and favourited  field of ethical and political philosophy, but I have also watched talks on the stars, psychology of shopping and even some on farming.

But do not be put off by my ridiculous obsession, TED talks are lecture-like talks given by all sorts of people on any subjects in front of a live audience and are then filmed and uploaded onto their website- or if you are a real geek like me- the app. These talks can vary from professors on Middle English at Cambridge giving lectures on Chaucer's 'Canterbury Tales', to physics, to cars, to sex, to basket weaving, to hospitality, to the environment, to endometriosis. You see you can find one on anything. If I really wanted to I could probably do a TEDX talk on why every household should keep two chickens- its a bit like pitching or purposing an idea or dissertation you see. Or just an interesting story like when my brother managed to hit himself in the face with a golf ball... having hit it forward. But that is another blog for another day.

Carol spoke with passion, conviction and emotion and I came in at the end with a few dramatic sentences. Once the video is available to me I shall upload it on here.

The most important thing was after the TEDX day was finished. Afterwards we were greeted by groups of lovely girls wanting to ask lots of questions and outraged by society that they haven't heard of this disease before. They, like most of us, feel let down by society they they knew nothing of such a common disease that effects so many people with potential devastating effects if it goes undiagnosed for too long. Some girls feel inspired to make 'Endometriosis UK' their house charity which is amazing- and not just because they are raising money but because then everyone in their house and thus the school, will then hear of endometriosis. Slowly but surely the snowball is starting to roll.

Hopefully we may see a few of them at the million woman march next thursday.

Our Chair, Trevor, who is an absolute darling and we are so lucky to have such a gentleman behind us with such vision, passion and dynamicity (Its an Alice word, derived from dynamic) spoke to me of a beautiful metaphor which I shall share with you in hope:
      "The cows are leaning on the fence and it is bending. It will one day break, it is not far off, and we will be grazing in lush pastures anew."
Now I come to think about it, I guess he was referring to us (and himself) as cows, which in hindsight is hilarious (cheeky man), but I like the idea of bending the fence, a fence that is preventing and holding us back, and the grass being genuinely greener on the other side. A struggle worth the reward.

We will get there. This has been the best 'Endometriosis Awareness Week' to date, and there is no such thing as going backwards.

This week has made it apparent to me just how much DEMAND there is for endometriosis to be spoken about, be it now the endless and brilliant women who have emailed me having watched 'This Morning' thanking me for sharing my story and speaking up for endo, or the girls who where so grateful to have been educated about a condition they never realised existed. Both are our 'target markets', and I am compelled to do as much as I can, meet and surpass demand if you like.

It is rather daunting because there is so much work to be done. And it is always against the tide because no one wants to talk about periods. But I know this is a worthy cause and I want to give the fourteen year old Alice hope, a role model and permission to talk to others about it and not be embarrassed or to ever be in a position where she may feel isolated by this bitch of a condition.

 Thank you so much for your emails, this week has been overwhelming. Thank you for sharing your stories with me, please do not stop,  I will always reply. Except for my brothers friends. You can stop emailing me, squirts.

I shall repeat on my blog to what I say to everyone who emails me, I am not doing anything special right now, you reading this can make as bigger impact as I am. You can share this blog with one other person, or donate to the 'Endometriosis UK' website, or join us in the Million Woman March, or tell your friend what endometriosis is, or go and see a friend in pain or who is low and run them a bath, give them a massage and tell them you love them. I have said it before and I will say it again, we cannot change the world with one big gesture. It has to be lots of small acts. The world is complicated with lots of cogs like a clock... Everything is a chain of cause and effect and it will not happen over night.

Plant seeds, spread the word and do something everyday for the cause.

If we were all to do that, we would be amazed how many small ripples create a current.

Keep the emails coming, they are keeping me sane, happy and driven. You are all brilliant.

Be strong, be brave, and be silly.

All my love,

Alice XXX

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