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#1 CFMBabs

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Posted 06 May 2008 - 08:11 PM

Many of you know that I write on the blog section of the ISN.If you are familliar with my blogs you will have no doubt read an article some while ago too unbelievable to be true!
It was about an old friend across the pond who I met some 26 years ago.

I used to love writing letters and always wanted a pen pal from overseas. I placed an ad and then out of the blue I was contacted by a young gentleman from Alabama.His noame was Bill. He was studying Eglish in Cambridge England and wanted someone to correspond with whilst away from home.

We began to write each week and became really good buddies, so when the spring break came around I invitied him to our home in the north of England to stay for a few days.
We got along really well -- there wasn't any physical attraction, just purely platonic.
We travelled quite a bit. I showed hom around all the local sites of interest and when he returned to Cambridge we continued to write.

Winter holidays came and we invited him back again for the celebrations. We had a wonderful time -- being away from home at that particualr time was hard for him.

Finally after a couple of years, he went back home, but we continued to write! Years passed and our letter became fewer and then eventually stopped.
I met my future husband, got married, had my daughter and life moved on. I often thought about Bill. What he would be doing now? Would he have got married ---have kids? I just never knew.

I found this site a long time ago, when we got our first computer. I'd just been diagnosed with sclero and was looking for information. I began to read all the stories and what I saw freaked me out! A care giver story as told by Bill Jordan. Could this be the very same Bill I knew so many years ago?

I nervously emailed him feeling a bit foolish. What would I say if it wasn't him?
A week passed by, then one day I noticed a familliar email -- a response to my message to Bill. I nervously opened it and amazingly it was him! He'd cared for a young lady who unfortuantely passed away with the disease a few years ago. Although he'd never married it was obvious that he'd cared for her very much!

"Only two ladies I've ever known in my life and both of you with sclero!" He said

How uncanny is that? We often write a line or two just to keep up with news. My lost pen pal found on a site for scleroderma -- well I never!

Just goes to show that this world is not so big after all and how wonderful this site really is.

Best wishes
Barbara xxx

#2 truman

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Posted 07 May 2008 - 02:07 AM

Barbara:

Such a wonderful story! This site is truly a lifesaver to so many of us and to think, it's truly the core to the friendships we've come to make.

Thanks for sharing...........
Tru

It is what it is...........

#3 Shelley Ensz

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Posted 07 May 2008 - 02:40 AM

Hi Barbs,

Interestingly, I will add that Bill's story is online at:
Bill Jordan's Story.

Bill Jordan: Surviving Boyfriend of Wendy Carter She won my heart with the oxygen dance. Wendy Carter passed away in July of 1998 after a long, courageous battle against systemic scleroderma, lupus, and pulmonary hypertension; all complicated by diabetes.

I met Wendy in July of 1997 when she was only in her fourth month of coming to terms with her illness. In March of that year, her doctors told her that she could hope for only three to five years of life remaining. But the clock was ticking much faster than anyone realized at the time...

His story is featured (on the cover even) in our first book based on this website, in Voices of Scleroderma Volume 1. And Barbs story is also in the same volume -- but they didn't realize their connection until after the book was published!

It's a small world...and an amazing book series, drawing together our stories from literally all around the world. This is with huge thanks to Judith Devlin, co-editor of the Voices of Scleroderma book series, who dreamt of the book series and made it into a reality for us all.

Each book is unique and has stories from over 100 people from this site, as well as articles by world experts in scleroderma. And to this day we are surprised by the wonderful connections that people have discovered through the books and the incredible support the books offer, even to people who aren't able to be online with us all.


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Karenlee

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Posted 07 May 2008 - 02:40 AM

Barbara,

What a wild story! What are the odds of that happening? Slim to none.
Makes you think that certain people come into our lives for a reason and that meetings are not so random after all.

As much as this disorder (I dont like the word disease) freaks me out, I think of the awesome people on here I never would have even known existed. All incredible people in their own ways.

Thanks for sharing that story.

Karen

#5 janey

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Posted 07 May 2008 - 03:17 AM

Barbara,
Your story gave me goose bumps. Whew! What a smaller, wonderful world.

Big Hugs,
Janey Willis
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#6 Sweet

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Posted 07 May 2008 - 03:49 AM

Barb,

What a lovely story that was! How very special.

Each of us have received so much from this site, in many differert ways.

Shelley thank you for making this all happen!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#7 annkd

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Posted 07 May 2008 - 07:13 AM

Barb - Amazing and heartwarming! My eyes filled up while reading that. You help me see that the world is a wonderful and nurturing place. Bill sounds like a lovely and caring man. Wow. Thanks for sharing that. -Ann

#8 CFMBabs

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Posted 07 May 2008 - 08:52 AM

I thought it was worth mentioning ---- I made a lot of typing errors in my original post mainly due to rushing. I also thought that I would re-write the whole story because it's so unbelievable and I didn't do it justice.
I'll write my next blog totally dedicating it to Bill and the wonderful story it really is!

I'm at the hospital tomorrow having a heart monitor fitted so I may not have enough time to give my full account of this truly amazing coincidence. Please bear with me and I'll write the blog as: Brief Encounter Of The Third Kind!

Thanks for reading!
Love andbest wishes
Barbara xxx

#9 Snowbird

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Posted 07 May 2008 - 10:09 AM

Amazing and wonderful, that's so great Barbara! It sure is a small world after all.
Sending good wishes your way!

#10 Guest_Sadie_*

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Posted 07 May 2008 - 10:28 AM

Barbara, That is a wonderful story! Thank you for sharing that with us! I agree with you and everyone, this website is a wonderful place! I have made so many friends on here! I hope your heart test goes well. I've had that done a few times.
Sadie

#11 debonair susie

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Posted 07 May 2008 - 04:43 PM

Hi Barbara,

This was such a touching story! It is really something... that this should come to light... after so many years! It is so wonderful, that the two of you are fast-friends, albeit friends via sclero!

This is truly a very special story, Barbara, in light of the commonalities of interest for the two of you.


Very Special Hugs,
Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)