Why break a long silence on the handicapped experience, grief, suffering and death?

It is 31 years since my daughter, Jennifer, was born. It is 26 since she died.

There was no Facebook when she died, no Skype, no real facility to share without turning to the conventional media, to the journalists and publishers whose primary concern would always be ‘the story’.

When our daughter died and we were interviewed by a member of the local press, I was ready to thank a great many people, including medical staff, for what they had done. I was also ready to make certain criticisms, to tell some of the stories that were often not told, but my then wife wanted no part of that. Jenny was dead and a warm cocoon was necessary for my wife to survive that (though she didn’t, anyway) so we were to say nothing that might cast a chill. And while she was alive there were certain things we only ever shared with fellow-sufferers because you have to be very careful about pissing-off people that you depend upon.

My silence persisted. My marriage broke down in the aftermath of our own little girl’s life, I became a single parent with other things on my mind. The parents of handicapped children who had been our friends dropped away from us, faced with the cruel reality that our lives were made easier by the very death of our daughter. Life took me to a different part of the world, to different priorities, different needs, and I felt a sense that my knowledge and experience must surely be becoming, anyway, out of date?

Surely, I thought, things must have moved on? Hospitals and medicine must have got better, understanding must have developed, progress must have been made? But whilst some probably has, too much, it seems, has not.

The Charlie Gard story, and others in recent times, have reminded this old-stager that an awful lot has NOT changed. People are still struggling with the same issues we struggled with a quarter of a century and more ago.

Check out, for example, this item by Sam Carlisle

 

So here I am. Watching, listening, and ready to speak out, ready to share in the hope that my doing so may help others who are still in the throes of suffering.

And if you are inclined to, don’t thank me. I am writing about what is for me water under the bridge. None of this is ‘about’ me. It costs me nothing – my little girl and I are beyond any petty revenges, so I am free to say what I think needs saying.

Agree with my posts? Then please share them. There are some dark corners that could benefit from the spreading of more light.

Affected by anything in them? Please contact me. I am listening.

 

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