Things are moving pretty quickly here at TSB (The Silent Bleed) – we’ve gone from an initial idea to the foundation of an international support group in less than a year. We now have the authoritative Dr Levy involved and our next project is to gather and share Superficial Siderosis stories from around the world.

 

But, we’re not looking for just any stories: we want the ones special to you because we believe everyone has a tale to tell.

 

The idea came to me one day whilst out with Jason Roberts (he and I are old friends – we met when he had more hair and I had more waistline). His boy is just 16 but I was watching the way he intuitively catches his Dad’s arm when steps have no rail or he’ll hold his Dad’s bag, cup, glass, or whatever else but often without anyone having to ask.

 

His boy has grown up with his Dad’s disabilities but because it’s been part of his normal life for so long, these aren’t disabilities to him, in fact, they’re not noticeable at all, it’s just life.

 

These are skills that school cannot teach. You can coach someone to care, perhaps drum into them protocol and procedure in dealing with different conditions but this natural intuition to look for and meet the small and to others, unnoticeable needs takes something special.

 

And I felt as though this was something positive that had come out of Jason’s illness – the fact that his son has not been disadvantaged but rather his formative years had been enriched with some profoundly useful tools:

 

• the ability to see people, not disabilities;

• intuition in caring for someone else’s needs

• an understanding that life is fragile

 

Have you sat back recently and marvelled at something you’ve observed? How have the people around you responded to your illness and what positive things have they gained from the experience? What things have enriched your life as a carer? Have friends, colleagues and family members warmed you with small acts of kindness?

 

I’m constantly blown away by the people who’ve stepped forward to help TSB raise awareness and raise money. Efforts (some big, some small - all important) have moved our cause forwards and it’s an exciting, dynamic place to work.

 

So we’re asking for some help. We are developing an area on the website that will publish your stories of everyday life. We’re looking for the details that make you feel good and in turn could make someone else feel good. It’s about capturing the positivity of the good days and recording it for other people to read.

 

Do you have something to share? Fantastic! Don’t worry if you don’t think you’re much of a writer, just jot it down and submit it anyway. Our editor can work whatever magic is required, so it can be up and making someone else’s day in no time.

 

For more information, please see our ‘This bit is all about you’ page. To submit your article, please cut, paste and send here.

 

 

AJF