The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
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One of NORD's members wrote this the other day. I don't have her name but I have her permission to distribute what she has written. I'm sure many of you can relate to it.
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The Inter-Body Exchange Program
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You - Have wanted to be able to "lie around all day" like me.
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You - Are envious of people with chronic diseases who don't have to work anymore.
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You - Wish you could get paid for not working the way people on Social Security Disability do.
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You - Wish you could get "free" money.
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You - Wish you could catch up on all your favorite sitcoms.
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I - Want a break from the 24/7 pain, fever, horrific headaches and constant "sick" feeling.
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I - Want to be able to get out of the house for a change and do something fun.
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I - Want to have enough money to buy food for a change.
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I - Want a break from medical and other creditors calling me all day every day, sending me threatening letters, and the desperate fight to keep my utilities from getting cut off, my car from being repossessed and my house from being foreclosed on.
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I - Want to get out from under the criticism and negative scrutiny of others.
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I - want to be able to put in an 8 hour day at the office without experiencing horrible pain and sickness after just one hour of being out of bed.
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Here's your chance. Limited time offer (I'm sure you will change your mind quickly after the exchange occurs).
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With the "Bodily Exchange Program" you will exchange bodies with your assigned partner and experience first hand what it is like to live in a body with a chronic illness and "be on the dole" of welfare.
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You will get to lie in bed or on the sofa instead of going to work. You will get "free money" that won't be enough to even pay for housing and utilities, much less buy food or medicines or go to the doctor, but it's "free" (oh, you did pay into that system all those years you worked, but never mind that).
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Your exchange partner will have the "pain" of going to work each day and having to "earn a living". It's unbelievable, but most people in our program would give anything to live in your world and have to deal with being healthy and having to work even for just a few short days.
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You, yes you, can experience all this, first hand! What an incredible learning opportunity. Get credit from your university for this program if you are a student.
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Contact 1-800-xchgabody
A very well presented challenge but, unfortunately, the people who need to read it would probably not recognise the message.
SvaraRaderaMy sympathy, understanding and best wishes to all members of the NORD group. I don't think we have such a group in England.
Maureen
Maureen,
SvaraRaderaI thought that maybe, but only maybe, some of the "yous" might read my blog - they definitely won't see it on NORD's website!
In spite of the name there are quite a few members from other countries - and I think I've seen it mentioned somewhere that there are similar organizations in Europe.
Margaretha
I hope that lots of people read it, Margaretha and that attitudes might change.
SvaraRaderaMaureen
I am one of the I's too Margaretha. What an excellent message, we don't have such a group here. Oh yes, how I do resonate with it all. I often wish the powers that be could step into my body for about an hour, then I'm sure the funding, the research, the understanding would follow promptly. I wonder if you feel the same.
SvaraRaderaCarole
Maureen,
SvaraRaderaI'm afraid attitudes are very hard to change - but this post might start a process in some people that hopefully will lead to some understanding.
Carole,
As I said to Maureen, it takes a lot before some people (most people), are willing to give up their preconceived opinion. And I do think it takes more than an hour or two for most people to understand what it is like to live with an illness, to fully understand the daily life-long struggle. Some times I wonder if it is our own fault that they don't understand - I don't get out to see friends unless I feel well, so most people don't see me in the dark hours. And I avoid talking about my illness as I know that most people won't understand it.
I hope today is a good day for you!
Margaretha
Magaretha - something nice awaits you on my blog, with apologies if this is not your kind of thing.
SvaraRaderaThank you Lady Luz,
SvaraRaderaI'm honored - but I need some time to figure out whom to choose and heaven knows what seven facts about myself I can come up with.
Only the links to Celest and myself works - can you check the others, I'd love to read their blogs!
Margaretha