It's a new day. I slept and my batteries recharged. I can write again.
I had commented on a post. Someone had replied, but I didn't get it. It was late and I couldn't type anymore. I remembered the comment line allowed a picture "or a video." I'd just record what I wanted to say.
The comment line uploaded but wouldn't post. I finally gave up and posted "?".
My original comment was,
I have a report that says I'm brain dead.
Lights are off and
I use a table lamp.
I have a report that says I am "decerebrate."
This report can be interpreted two ways; just my motor skills are like that, or all of me is. I go with the former.
Take the word "decerebrate" and break it down "De" means without. "Cerebrate" or cerebral means brain.
My posturing looked like I had no brain. Some will take this farther and say that my brain was dead. (I'm writing this later. I couldn't have been brain dead.)
My posturing looked like I had no brain. Some will take this farther and say that my brain was dead. (I'm writing this later. I couldn't have been brain dead.)
This clicks.
You can see the whole statement.
You can see the whole statement.
Why couldn't I write? I'll illustrate:
A child learns to jump. The child is happy and does it again and again. When dinner comes, the child is falling asleep in the food. There is no more jumping. A parent puts the child to bed.
The child wakes the next day and can jump a little higher and further. Jumping was learned and now there is growth.
Writing is the same with me.
Your video was a great way to communicate things that are hard to "see" in comments.
ReplyDeleteThat was easier also. The tech seems almost there to make this regular.
DeleteI've seen enough to know that you are nowadays very much brain-alive! Thank you for graciously tweeting me the link to this post its video this evening.
ReplyDeleteIt seems to me that you are now well beyond the stage in your recovery from mere brain-damage, no brain-destruction, at which you yourself would benefit from the sort of earlier interventions I had in mind, to which, I would argue, everybody in the condition in which you once were should be entitled. I still wish to pursue the need for that to become a legal requirement for every patient with a PVS diagnosis, such as was, in your case, proven wrong. However, I am not rich, priveleged or powerful - far from it. I am very much "a voice crying in the wilderness", praying for more influential people than me to jump onto my bandwagon, which I once branded "Scott's Law".
You were able to say "no" to whatever it was you said no to (which is none of my business). You could have said no to being killed too, of thirst and starvation, if that was ever threatened, once you'd re-learnt how to articulate your first word since being rendered speechless, the word "no".
But if that lethal and painful fate had been court-ordered for you too, before you'd learnt to say "no", then, like Terri Schiavo and others, could have been cruelly sentenced to a painful death.
As regards you own recovery, I can only pray to God to speed it on. And I certainly shall, as often as I remember to of my own accord, or remind me to. (I believe and preach - as a lay amateur - Christianity's God, the Holy Trinity, calling the Lord Jesus Christ my own Lord and Saviour.)
I don't see much scope for my helping you directly with your personal physical disabilities, apart from praying to almighty God (as I have promised I will) for the almost miraculous recovery you have experienced so far to continue apace. However, your voice would be a useful one to add to mine, in my one-man campaign to get the law changed, so that nobody in a PVS should ever again be killed by thirst and starvation, and that it should be reqwired that best-practice efforts should be made to communicate with all PVS patients, to see whether they might after all be enabled to express opinions and consent we can be sure is informed consent, with mental capacity, using the best technology available, even if this technology has been classified, at the request of the military, "for reasons of national security".
I hope we can form a friendship, even if we disagree about ways of working together, to make the world a better place.
It strikes me, though, that between us we could perhaps work slowly towards a change in the law, that made it completely unthinkable for anybody in the incommunicado condition from which, thank God, you have emerged, ever again to be starved and dehydrated to death, by health professionals to whom they were unable to say "no".
Feel free to email me or to DM me on Twitter, if there is anything you want to say to me that you don't want the general public to read.
Here are my contact details:
https://johnallmanuk.wordpress.com/contact/