Wednesday, January 18, 2012

Living with Bob (Dysautonomia): The Dorothy Shoe Project

Get involved in something fun!  This is from Rusty Hoe, whose blog Living With Bob is amazing.

Living with Bob (Dysautonomia): The Dorothy Shoe Project:

The Dorothy Shoe Project

Since my last post I've had a lot of time to think about what I want to do this year. Making sweeping statements about stepping back from a focus on illness to find a balance in my life are all well and good. But what exactly does that look like and what does it mean for the year ahead? This is exactly what I was contemplating at 3am the other night. Good old insomnia gives you a lot of thinking time. Not that all the thoughts are coherent, and many may involve elaborate plans of how to dispose of Bob's body should I ever manage to take him out, and perhaps others were about hot shirtless movie stars and back rubs. However, every now and then, you have an epiphany.

When I think back about the past 6yrs the one thing that has been in short supply is happiness. Let's face it, when you are dealing with a chronic illness day in and day out, frequently just praying you can make it from the couch to the loo without a face plant, happiness is your last thought. And I'm not alone. I read the forums, the comments here on the blog, and the private emails and messages I receive, and it is clear that happiness and joy have taken a back seat to medications, doctors and compression hose for many. We are consumed by the practicalities of illness and that leaves little time to plan, or even look for, joy.

When was the last time you were silly just because you could be? When did you last say "stuff it", I don't care what anyone else thinks? When you just let go? When you laughed? A real, true, snort and tears laugh? When was the last time you were truly happy?

Sadly, for many it is clear that they would be hard pressed to answer any of these questions.

Well I say bollocks to that! We deserve to have joy. We are worth it.

So in the wee hours of Thursday morning I made a decision. This next year I am dedicating to bringing a little joy to those with Dysautonomia all around the world.

How, you may ask, am I going to do that? Well one quick look at my header should give you a clue. Dorothy Shoes. Yes, I am going to use a pair of those impractical, sparkly shoes of magic to bring joy all around the world. I don't know why I didn't think of it earlier . My tutorial on making my shoes is still one of most popular. When I offered up a pair for my 2nd blog birthday I was overwhelmed with entries. For some reason that sky high pair of red glittery shoes bring happiness to many people, and that magic needs to be shared.

So I am announcing the creation of :

The Dorothy Shoe Project©

Currently I'm looking for expressions of interest from people living with Dysautonomia world wide to become involved in The Dorothy Shoe Project. The aim of the project is to bring some joy and levity to the lives of those with Dysautonomia, whilst also raising awareness.

A pair of Dorothy Shoes will be sent to various countries including the UK and other European states, USA, Canada, Australia and NZ. Participants spend a day being creative with the shoes, taking photos and/or a short video. A diary to record your experiences and any details you want to share will also be included. After which the shoes will be sent to the next person. Photos will then be sent to a central web page and the shoes tracked at their various locations around the world. You can wear them on your feet or on your head, in a wheelchair or at the hospital, riding an elephant or a unicycle, the only limit is your imagination.

For more information see the following video.

  • All expressions of interest should be sent via email to  NOT in the comments at the bottom of the page.
  • I am collecting numbers over the next 2 weeks to gauge interest and prepare for the logistical side of the project. 
  • Apart from your Country and Name you don't need to send any additional information at present. 
  • Once numbers are collected, more information will be sent out via email.
  • I have purchased a domain for the project which is currently being developed.
  • I'll put updates here on the blog, twitter #thedorothyshoeproject, FB, and once it is up and running, on the website.
Q. Does it matter what type of Dysautonomia I have?
A. No any type. It doesn't matter if you have POTS, OI, NCS, PAF, MSA, or any other form. As long as you have a diagnosis that falls under the banner of Dysautonomia you are welcome to participate.
Q. Does it matter what sized foot I have?
A. No. The shoes will be made in a large size to accommodate as many people as possible. If you have tiny feet think of it as playing dress ups like when you were a child. If you have large fit they may fit perfectly. The shoes represent a fantasy. They represent magic and fun. 
Q. I am in a wheelchair, can I still participate?
A. Yes. It doesn't matter if you are in a chair, use a walker, a cane, or are currently bed bound. The only limit is you imagination. You can wear them on your feet, or on your head. You can wear them getting your saline IV, at the gym, in a waiting room, on a unicycle, or whilst riding an elephant. Creativity is key. What is important is being silly and impractical. To embrace the pure joy of silliness. To suspend reality and just live for a little while.
Q. I am a guy, can I participate?
A. Yes. If I get expressions of interest from men I will source a pair of Blundstone boots (workmans' boots) and glitter them up. Or you are welcome to wear the heels. It's all fantasy. As I said above the only limit is your imagination.
Q. What about my privacy if I give up my address?
A. Addresses will be known by 3 people. Myself as coordinator. The person that sends you the shoes. And, the person you send the shoes onto. Photos will be identified by city, state and country and participants by first name only.
Q. What about raising awareness?
A. Part of the project is about raising awareness for Dysautonomia, although joy is the main aim. It can be as simple as using the shoes as a conversation starter. Lets face it, if you are riding the reclining bike whilst wearing a pair of bright red heels someone is going to ask you why. Or you can contact various media outlets to alert them to the project and why you are participating. Information for press releases and the like will be provided on the website once things are up and running.
Q. What about sponsorship?
A. Sponsorship would definitely make it easier for the project to go forward, as there will be costs involved. If you know of a company who may be interested in sponsoring the project please give them the contact details. 
So what are you waiting for? Sign up to participate. Spread the word. The more participants the better.

Lets bring some happiness back to all our lives.
Update: Thanks everyone for the amazing response. Have participants signed up from Australia, New Zealand, Ireland, England, USA and Canada. Keep those emails coming in. Keep spreading the news. Tweet, Blog, FB, yell it over a fence. Lets bring joy to as many people with Dysautonomia involved as possible. 

Update 2: Well after a busy 3 days, 80+ participants and 7 Countries involved, with the addition of a participant from Israel overnight. An amazing response, and a huge thank you to everyone who is making this possible.
Michelle :)

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