During part of the testing, to check my awareness, I was to list all the things starting with F in a few seconds, I started, as fast as I could with my inhibited speech: “Fabric, French, Frog, Fibernachi sequence, Filibuster..”
After the seconds, when I was blinking in frustration at not adding ‘Fermat’s Last Theorem’ or ‘Fermat’s Little Principle’ (Okay, I’m a math geek, If I had read the hobbit recently I would have said Frodo but I forgot!), the RN, a woman the same age as me or a few years younger gave me a point for the F-word, “Everyone thinks it, you didn’t say it but I will give you a point any ways.”
Then she continued, “Gee, I wish I had known you.” Which led into her knowing about Fibernachi and the 12th century man from Pisa who published Liber Abaci and introduced the idea to the world.
It stuck in my head, ‘..wish I had known you’ because I was sitting right in front of her. I was still alive (honest, no zombie caretaking here!). And I was still mentally active and aware and yet, for a person assessing the mental function of palliative individuals, I was already gone, not dead perhaps but as good as.
‘Invalid’, as a ‘client’ or ‘person under care’ I am talked about, talked over (as an EMT and Linda literally talk to each other over my head on the weekend), or tolerated but I am, for this society, functionally gone. An ‘invalid’ is a person who is sick, who needs care and disabled, but it is also a word which means void, without cogency, without substance, deficient. The word comes from the latin ‘valid’ which means strong and ‘in’ which means ‘not’ – and so from times and generations before the idea of an invalid is tied to someone who has no voice, due solely to strength. The community already accepts that there are those who are not part of society, yet who are not dead, but not heard either: they are invalid.
We all have a voice, but as the film ‘The King’s Speech’ illustrates, society is well trained to assign ‘sub-par’ to anyone who is different. How a speech impediment makes a man not worthy to be king, or to be a lesser king is an idea which has not changed in hundreds of years. Richard III isn’t shown with a hunched back because of diversity and acceptance but because the Christian misinterpretation that ‘imperfect outside means imperfect inside.’ But the difficulty doesn't diminish a person, it only allows them to show abilities in overcoming or integrating it.
With one new worker a day (including today), while two of my regulars are on holiday, I am bombarded with being laughed at, mocked, made to be a punch line or told what my reality SHOULD be. ‘Time for dinner!’ my worker says at 2:30 in the afternoon.
“No, time for breakfast, as I just got up.”
“Breakfast?!” with a peal of laughter, “Far too late for that.” She was not good in adapting herself to her client (me!). Good workers do, bad workers would have us all be disabled obedient robots, eating at the same time, having the same problems and the same solutions.
The thing my regulars know is that ‘The schedule follows the body which follows the disease.’ – and when I get up, there are things I need with my first meal, which is breakfast, whether that is as 2:00 am or 8 pm. If keeping a strict schedule of ‘wake now’, ‘eat now’, ‘go out now’ would keep me functioning better and living longer I would do it. But at a point in the disease, when ‘will power’ can’t make someone with MS not have a spasm, or someone with Parkinson’s not have fog, it can’t make me have the 9-5 life either. I follow the disease so that I can live the best quality of life while not dying. And it has kept me in the 'not permanently dead' area so far.
While I am in need of care, I am not a person who is morally weak or weak in intent or purpose. My body is not ‘failing’ any more than you are ‘failing’ by growing a day older (people have loss of function in old age too). True, it does not function anymore, and some systems are not working correctly, but I am not a disposable person, a discard. There is no need to wish you COULD HAVE known me when I am still here. A person who is unable or unwilling to give value to my words by lack of waiting to hear them due to my being speech impaired, reveals how that person judges others: superficially.
In a turn about, I woke yesterday not with ‘word salad’ (where I know what I am saying, or sometimes not, but it comes out as words that don’t connect or make sense), but where everyone else had word salad. Or more likely, where I had scrambling connecting my hearing to the language center. But to sit and hear Linda in earnest telling me ‘drub libble scan turolo blat, ver iplico snlort!” convinced me that I could likely assist her speech best by going back to sleep. Three hours later, she was cured (she claims that she was speaking normally). I nod reassuringly, as advised by all the pamphlets on ‘care’, and then converse over her head.
7 hours ago