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Coincidental Scleroderma



When I look back over my 46 years, I suddenly realise that, I either have a very good memory, or a very boring life. I mention the boring bit very loosely as I for one don't think my life is anything like boring.


I can't begin to put into context any one part of my life, most of it fortunately, has been very happy, or is it that I don't remember the bad times, whatever!


I remember one particular episode of my life being pretty wild. I was in my early twenties. I had a penpal-an American guy from Mobile. I loved to write and as it happened, so did he. He was studying here in England and I became his English friend, not girlfriend I have to add. He was residing in Canterbury and I lived here in the north some 300 or so miles away. We wrote almost weekly and when the winter holidays came round I invited him to stay at our humble abode, to which he agreed. It was 1982.


It was Dec 23rd and I was waiting for him to arrive at the train station. It was one of the worst winters on record and everywhere was covered in snow. I stood on the platform at Manchester Victoria, freezing my fingers off and jumping up and down to keep warm, when this figure appeared in front of me. I knew him instantly. He was extremely pleasent, nervous but curteous and was wearing the brightest heaviest jacket I'd ever seen. Anyway, after our initial greetings we caught a train to take us to my home.


The fire was built up high and my mum had made a meal for his arrival. He was so cold that he could hardly speak and he had the most dreadful head cold ever. We sat him beside the fire and my parents made such a fuss of this young man from Alabama almost treating him as a son. He spent the entire holidays with us and when it was time for him to leave, we asked him to stay in the Spring.

We continued to write throughout the year and when the Spring holidays came, he returned to us in Lancashire. This time he was more comfortable having met my parents previously. We went on several trips, to the English Lakes, York and the seaside. He told me that he intended to return home soon but he was hoping that we could still be penpals across the miles. We did just that!


The years passed, we wrote less frequently but kept in touch occasionally. Then I met my future husband, it was 1985. I didn't write again, and I think he understood because he had other commitments too. The years rolled on.


It was 1997, I got my first computer. I had a child and a wonderful hubby. I'd had a particulary tough year having just recovered from pneumonia. The next few years, my health deteriorated. I'd always had Raynauds and it seemed to be worsening as was my swallowing too. I was being passed backwards and forwards, different hospitals, different doctors, one misdiagnosis after another. I ran my own business, which against all the odds became sucessful, and I continued with my wilderness years as I call it until I was diagnosed with scleroderma in 1999. I often thought about my American penfriend and what he'd be doing now, but I didn't like to contact him as I knew nothing of his present life.


I was playing around with my computer at work one day when an employee asked me the name of my condition. She nodded and asked me if I'd been on the internet to find out more about the condition! I'd never been one for tinkering around the net, especially to learn of my fate but I typed in 'Scleroderma' all the same. A list of headings came up on my screen, one being ISN. I spent the entire afternoon browsing the site, then I joined. It was the year 2000.

I began to write posts, read all about the condition and spent more time on line than ever before. Then one day I was going through the list of members and their stories, when I came across a name I knew very well. "No, it can't be" I thought but I continued to read on. I was sure, it was my American penfriend.


I nervously typed out an email and pressed 'send' with an apology for my contact, just in case it wasn't him. The weeks went by and I checked my mail box daily but there was no reply. I put it down to contacting the wrong person and thought it would have been too good to be true anyhow.


I arrived home from a particular taxing day at work. I'd been so busy that I'd never been near the computer for days. That night, however, I needed to do some accounting so I switched it on. My mail box alerted me that I had email, probably spam I thought. I looked in amazement as a name I once knew came up. It began with, "I can't believe it." It was my penfriend! I was so excited, my fingers couldn't type fast enough and I returned a reply with my disbelief that Scleroderma had affected both our lives in some way or another. He wrote back quickly and began to tell me the story of his girlfriend who had died with Scleroderma and that's why he wrote the story on the ISN website. He couldn't believe the coincidence and neither could I. How can it be that such a rare condition had touched his life twice.


We still write occasionally to each other and if it had'nt been for ISN we would never have found each other again after 20 years. If that's not a coincidence then show me one better.


Scleroderma tears your life apart but it can also bring old friends back together even if it's only through pen and paper.


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