Thursday, 28 November 2013

Pay it Forward: Dysautonomia style.


One thing I have learnt about the chronic illness community is that it is filled with many wonderful and generous people. The support I have received from complete strangers, both here in Australia and all over the globe, has kept me going through some of the toughest times. For someone to spend their precious energy to send me a funny photo or Dorothy related shot because I'm down or they just wanted to share a laugh, is a beautiful thing. And it is one for which I am very grateful. This is the strength of the community, and the beauty of the Internet. To support, and receive such support, is truly wonderful. 

In light of that I wanted to propose an idea. This idea was born from an event earlier in the year, and my favourite Ghandi quote,

"You must be the change you wish to see in the world."  

Back in May I was lucky enough to be given a free wheelchair, Vera, to tide me over until my reclining chair comes. Vera was an upgrade from my first wheelchair, Bernice, and has a fabulous squishy cushion for my dodgy coccyx. This left Bernice, my first wheelchair, sitting forlornly in my rumpus room going to wrack and ruin. I didn't like seeing her sitting there unused. So I put an advertisement on our local Dysautonomia support group. It ran a little something like this:

"FREE TO GOOD HOME: Bernice has been a trusty companion since I first got her. Despite my initial reluctance she's been increasingly on the scene, going to shopping centres, restaurants, even comedy gigs. As you can see from the photo she's up for a laugh and appreciates sarcasm. She may be a little cheap, but in no way nasty, and is up for bedazzling or a new coat of paint. Don't let her start at the Aldi Home for Wayward Wheelchairs fool you, this lovely lass has gusto and class. I have recently upgraded to Vera and despite my love for Bernice she is looking a little forlorn in the corner of the rumpus room, especially when Vera and I head out on a date.


Such a comely lass as Bernice needs to be out and about, and is the perfect starter chair for someone tossing up if they need/want a chair. So I'm offering her up free to a good home to anyone in the Melbourne area who can come and pick her up. She may even be the perfect starter chair for many and travel all over Melbourne as part of a pay it forward campaign.

So if anyone has a forever or at least a, for a while, home where they can give Bernice the love she deserves, she's yours. First in best dressed, Melbournians."

Bernice was snapped up quickly, and now lives with Caroline a few hours away. Here she is in the doorway of her new home poised for an outing.

("The beloved Bernice. My freedom wheels." - Caroline.)

I was lucky to have Bernice and I wanted someone else to have the freedom she gave me. And I'll have to admit the first time I saw a photo of Bernice and Caroline out and about, I was filled with joy and a wee bit teary.

(Vera will also go to a new home when my tilting chair comes.)

There are many people in our community who are either unsure they want a particular aid and don't want, or have, the funds to try them out. Alternately, many simply don't have the money to purchase aides they desperately need. When you think that even one pair of medical grade compression stockings can set you back $100+ you begin to realise that being ill is an expensive business. And for many it comes down to a case of prioritising a litre of milk and some bread for their family, over a much needed chair or cane. 

So I want to propose a medical/Dysautonomia style, Pay it Forward movement.

How many of us have equipment, be it canes, wheelchairs, shower chairs, compression stockings we brought, we wore once, and didn't like, or they didn't fit? How many have gym equipment, a mini cycle, therabands etc that are just lying around thanks to a change in our health, or an upgrade?

If you've improved you may have devices you no longer need. If you have been lucky enough to get upgraded equipment you may have your old equipment just sitting around gathering dust. Why not give it to someone who needs, and can use it?

It's easy to participate:
  • Decide if you have equipment you no longer want or need.
  • Make sure it is in working order and mank free.
  • Hop onto your local support group site.
  • Or, alternatively a forum or general support group.
  • Write up a short “Free to Good Home” speal.
  • Organise a pick up or drop off, whatever you are comfortable with.
  • Know that you have made a difference in someone else's life.

Remember this about gifting the piece FREE. 

It's about paying it forward to those who may not be able to afford that chair, cane, pair of compression stockings, etc.

That piece of extra equipment you have languishing unloved in your cupboard or back room may change someone else's world.

So what are you waiting for?

Cheers
Michelle :)

I would love to hear how people have Paid it Forward. Drop me a line here on the blog, via email or over on Facebook or Twitter.

4 comments:

  1. I will be forever grateful for Bernice and if/when the day ever come that I don't need her anymore I will be forwarding her to the next person. Hoping she will take me to my beach this summer. It's been so long since I could go. As you know she got me to the Monet exhibition which would have been impossible before her. I have always given to op-shops rather than throw anything out as I am huge on recycling so love this idea.

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    1. I really hope there are many beach adventures ahead for you both. I'm so glad she can give you a bit more freedom. So important for us. I do hope people take this on board. So many in our community can't afford wheelchairs, walkers, walking sticks etc it would be fabulous if we could help each other. xx

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  2. I just wanted to thank you for taking the time to share your thoughts. My daughter has been sick with what her doctors believe to be POTS/Dysautonomia type illness, for 11 months and unable to eat anything for the past seven months (cause currently under investigation).

    She's eleven years old and has only recently been able to return to school after missing most of her grade 6 year. Grade seven is attended mostly on a part time basis.

    As a parent, seeing my once very active (competitive gymnast) unable to walk through a mall or even get out of bed many days is terrifying. Given her tendency to faint on a daily basis, even tasks like taking a shower or being home alone become dangerous.

    I discovered your blog at 1:30 in the morning during a sleepless night while mourning the loss of the life my daughter was once destined for. Reading your blog reminded me that despite the frustrations with my daughter's illness, she is still destined to have a great future.

    Thank you,

    Amanda

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    1. Amanda I'm so sorry to heat your daughter is so unwell. This is a horrible disorder as an adult, but so sad to hear so many children are also dealing with it. I hope your doctors can get to the bottom of her symptoms and offer her some treatment/management strategies to help. Just in case you didn't know there is a kids based Dysautonomia organisation http://www.dynainc.org/ which may be able to offer you some advice and support. So hard as a parent to see your child so unwell and not be able to help them. I'm so glad my blog could give you some hope. She will have a great future, and I'm sure you'll find a way through these current hurdles. She's lucky to have a mum by her side to love and advocate for her. xx

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx