Time to share our story

My disabled twin sister died in a fire

Putting this into the public domain isn’t easy. It concerns a traumatic event of half a lifetime ago, and a close connection ruptured. It’s not something I’ve talked about with many people. Friends I’ve made in the years since won’t be aware of all the details, most colleagues at work would have no idea about this part of my life.

For the first 27 years of my life I was a twin – the non-disabled twin of a sister with cerebral palsy. Then, completely unexpectedly, she died in a horrible freak accident – she was literally found dead on her doorstep.

How come she was disabled and I wasn’t? It’s all to do with complications surrounding premature birth. We were low weight babies, born ten weeks early. Clearly it was touch-and-go from the start – our parents didn’t even know they were expecting twins until eight hours before we were born, and we spent our first three months of life in hospital. Or rather, for much of that time, in separate hospitals.

We did pull through. But then, when it comes to risk factors for cerebral palsy, Jenny hit the jackpot:

  • premature birth;
  • multiple birth;
  • low weight;
  • forceps delivery; and
  • a severe hypoxic episode or ‘blue turn’ at six days old.

Her life journey between then and that grim October night in 1996 was tough going but with plenty of fun and achievements along the way. Being Jenny’s non-disabled twin, I was there alongside for much of it. It’s a very strange perspective – seeing someone grow up at the same time, but not doing all you do, trying to copy you but not always managing, yet also growing into a person into their own right.

Front page, 'Bradford Telegraph & Argus', 16 October 1996

Bradford Telegraph & Argus Wednesday 16 October 1996

It’s almost 20 years since Jenny died. In the last four or five years I’ve been re-visiting our experiences in my mind and ended up writing Twinned – the story of Jenny’s life, the circumstances of her death, and of my life with and then without my disabled twin. Having written it, the next step is to get the story out there.

I’ve started this blog to help get Twinned published, to write in more detail about some of the topics covered in the book, to flag up the work of organisations that may help people interested in the issues raised. Oh yes, and to have some fun with quality writing on off-topic – or as I would call it – ‘apropos of nothing’ subjects.

Given the nature of Jenny’s life – and her sudden death – some blog entries will make uncomfortable reading. I’m not one for sentimentality or for the idea that dressing up awful events in twee words would somehow soften the impact of what’s happened. Raw nerves might get touched.

What can you do?

I’d love to hear from other non-disabled twins to a twin with cerebral palsy, or anyone who’s gone through a similar traumatic bereavement. Do you have a sibling with cerebral palsy? If so, why not get in touch about writing a guest blog for this site?

I hope you’ll forgive my cheek in not being backward in coming forwards. My main aim is to find Twinned a publisher. I’m no PR guru and don’t any contacts in this area of publishing – so if you do, please get in touch. Anything to help get Twinned published will be brilliant.

Please spread the word:

I’ll be blogging at least once a week so please come back or, better still, click the ‘follow’ button in the right-hand column.

Cheers
Ed

Cerebral palsy

Cerebral palsy is a term for conditions affecting movement and coordination. It’s caused when the parts of the brain responsible for controlling muscles get damaged or develop abnormally, usually at, shortly before or shortly after birth. In the UK about one in 400 people live with cerebral palsy. The main physical effects are muscle stiffness or floppiness, weakness, uncontrolled body movements and problems with balance and coordination.

The main agency working to support people with cerebral palsy and their families in the UK is Scope. In the US, cerebralpalsy.org.

For information and support on premature babies, visit bliss.org.uk.

Lone twins

With the extremely rare example of a set of twins dying simultaneously, I suppose one twin’s always going to outlive the other. Lone twins – or twinless twins, as they’re known in the US – go through the same grief as anyone else losing a loved one, but with the particular twist of the other being so closely connected to them during their formative years. For more information or support see the Lone Twin Network and Twinless Twins (US).

For general information and support with bereavement, see Cruse Bereavement Care, or Dying Matters.

* I have no links with any of the organisations mentioned above.

About Ed Green

Writer and editor, Yorkshire bred, now living and working in Central London. This blog charts the writing of my memoir 'Twinned' - life with and without my disabled sister. It features disability issues, cerebral palsy, traumatic death, bereavement, twinless twins, guest posts, and throws in the occasional 'off topic' post.
This entry was posted in bereavement, burns, cerebral palsy, death, disability, family, human interest, lifestyle, premature babies, twins and tagged , , , , , , , , , , , , . Bookmark the permalink.

4 Responses to Time to share our story

  1. Annemarie says:

    Well done Ed! I wish you luck.

    Like

  2. I’m a twin too and often amazed that we were both born unscathed though there was a long gap between my brother’s arrival and mine. Was very surprised to find a seven year old school friend tell me he was a twin but his brother had died at birth. Or my friend losing one twin in-utero and the second twin being disabled. So I guess I treat each day as a gift. Thanks for sharing your story.

    Like

    • Ed Green says:

      Thanks Jeni, it’s interesting to see how many different twin stories there are. I’m at least fortunate to have many years of happy memories of Jenny.

      Like

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