I am not the only one who like Joel in his recent blog, can quote from 'Animal Farm'.
As I posted on his blog I very much feel at times like the pigs in 'Animal Farm' who having supplanted their masters in the revolution, now ape their habits and walk on two legs.
As the first person diagnosed with an ASD to have broken what I once thought to be an impenetrable glass ceiling (the metaphors come thick and fast I must be an AC apostate) and been elected to the board of the National Autistic Society, it is not just my fellow AC's I have to be looking at over my shoulder, for their accusations of having 'gone native' , * as I am equally liable to invoke the suspicions of NT parent councillors like Mike Stanton and his colleagues who might think the board are not pushing fast enough for the NAS to serve the needs of the many and not the few.
Be that as it may, the reason I am there is not so I can join the ranks of 'super-aspie' touring circus which Donna Williams has criticised for charging exorbitant fees - would that I had half a chance :) - I am there for the same reasons as I am becoming critical of a lot of posting in the autism hub itself, because I believe in the reasoning behind the slogan "nothing about us without us"
I have to say it, but the problem is that important though it is to disabuse the public of the notions that mercury poisoning = autism (which nobody much believes in the UK as we are still too busy blaming MMR) , important though that is, that is not where the main fight is, and that is to realise that autism is for life, and because most of us spend more of our lives as adults than children, that there we must have proper recognition and a place in society.
Furthermore, that although there are 'good parents' who agree with that and want it as an aim for there as yet young children, the message has to come primarily from us not them. If the parents continue to evoke that old line "but you can speak for yourself my child cannot" they run the risk of effectively taking our voice away, because we are the ones with the condition, the basics of autism are the same for everybody whether we have the IQ of an Isaac Newton, or the IQ of Forrest Gump (not that I set much store by IQ anyway which is another story). Well nobody reading this to my knowledge has met me as a preschooler, so how the hell can anyone compare a child to the adult the child became?
Amanda often makes the point so much better than me. So it is to Amanda's recent blog on privilege I now turn. As the pig who has learned to perform the circus trick of walking on his hind legs I am well aware of the privilege that invokes. In my most recent encounters with psychiatry, even when I was at my lowest ebb and most vulnerable, requiring the assistance of my laptop to communicate I can consider that I was less at risk than my less esteemed compatriots in that what I say these days carries authority. I am secure in my diagnosis for even though the last psychiatrist I saw entertained the common prejudice of the profession that my self awareness betokened very high functioning that she would not have recognised in our interview, she was not going to overturn the diagnosis, or recommend any horrendous regime of medication.
It was not always so. For before I got my snout so securely in the trough 'per ardua', I was not exactly welcomed by the other little piggies who to change the story now, definitely regarded me as the big bad wolf about to blow down their house of straw.
And while I am about it I'll huff and I'll puff and I'll blow Kristina's house down too, for you were indeed lucky that you were not present at the Liverpool conference last year, to have me blast you for your paper, (in suitably Hopkinsian alliterative style and Elioteric enigmacity) for having the audacity to psychologize the linguistic style of autistic utterance, that is fairly and squarely not your prerogative, it is Cosa Nostra and beware the Sicilian breakfast :)
Well I have now risked the hub's ice pick assassin for sure, for being so bold. I was always far too sympathetic with the rebel Snowball when I read Animal farm for the first time :)
* footnote, I was surprised to discover that Anthropologist Structuralist Claude Levi Strauss -the man who put jeans on the Amazonian tribes :) - was still amongst the living.
Wednesday, May 30, 2007
Friday, May 25, 2007
Mystery Ilness, where's House when you want him?
I have not been on the blogger map for a while.
I have not really been myself for some time as it has not only been the anxiety of University, finances and benefits that have brought me down, but a "mystery" condition,
It manifests itself with twitching and/or cramps in various muscles varying from muscle jerks to barely detectable but constant vibration. Most worrying of all is the way that my tongue has been non stop twitching for over two months (maybe more as I first noticed a couple of months ago when ironically I lost my voice shouting at the phone after making an appointment with the neurologist)
It is difficult for me to know whether what these muscle symptoms are, for instance are they related to the various parasthesias, I have in my hands and sometimes my leg and feet which are supposedly from trapped nerves, or is it something else.
Whatever, if I count in the parasthesias, I find myself looking at the possibility it is not trapped nerves at all but demyelination as per something like MS.
If I look at the tremors, like the desire of my teeth to be chattering all the time, and finger and thumb tremors in my right hand, I start thinking Parkinsons, but worst and most frightening of all is the tongue twitching. Especially when you start thinking what it might be and then find you have difficulty swallowing or pronouncing words.
The good news is that I have had the neurological exam now, and there is no weakness in any of my muscles, or bad reflex signs or anything to indicate a progressive neurological disease of any kind. If the EMG test which I will probably have to wait months for is clear, then I am in the clear completely, however I am still left with the twitching, the cramps and the tremors which is annoying to say the least.
For what it is worth I have had muscular twitches of one sort or another ever since my teens. I first saw a neurologist in the 1980's who did not see them (they mysteriously come and go, sods law they are never there when you see a consultant) he just wrote me off as a clumsy person.
Nothing bad showed up the last time I had an EMG test about two years ago, but the twitches had not migrated to my face then.
If anyone wants to do some useful medical research instead of looking for cures for autism, they can go and find a cure for this condition, trouble is nobody cares about it, because it does not kill you, it is simply an unexplained neurological condition that is left over when you have eliminated all the bad diseases out there. Even House wouldn't have the answers for this one, but it seems there are lots of us out there with the same.
It has been called Benign Fasciculation syndrome a concatenation of words which I find effectively meaningless because benign it is not. Especially when you consider the anxiety it cause people like me who have access to google and a list of the worst possibilities. What scares the living daylights out of most people who have it, is the surface similarity of the symptoms to ALS, in my case with the tongue and face now chiming in, Bulbar onset ALS the worst kind.
Oh well, I am going in hospital for another operation on July 3rd. I will probably die of MRSA or septicaemia knowing the state of hospital hygeine these days. And if I live (which I probably will) there is no guarantee it will be any more successful than the last one, which still leaves me with some problems in my left hand.
The joys of being a pessimist and hypochondriac eh :(
Psst what's that I heard someone say, mercury poisoning ........ :)
I have not really been myself for some time as it has not only been the anxiety of University, finances and benefits that have brought me down, but a "mystery" condition,
It manifests itself with twitching and/or cramps in various muscles varying from muscle jerks to barely detectable but constant vibration. Most worrying of all is the way that my tongue has been non stop twitching for over two months (maybe more as I first noticed a couple of months ago when ironically I lost my voice shouting at the phone after making an appointment with the neurologist)
It is difficult for me to know whether what these muscle symptoms are, for instance are they related to the various parasthesias, I have in my hands and sometimes my leg and feet which are supposedly from trapped nerves, or is it something else.
Whatever, if I count in the parasthesias, I find myself looking at the possibility it is not trapped nerves at all but demyelination as per something like MS.
If I look at the tremors, like the desire of my teeth to be chattering all the time, and finger and thumb tremors in my right hand, I start thinking Parkinsons, but worst and most frightening of all is the tongue twitching. Especially when you start thinking what it might be and then find you have difficulty swallowing or pronouncing words.
The good news is that I have had the neurological exam now, and there is no weakness in any of my muscles, or bad reflex signs or anything to indicate a progressive neurological disease of any kind. If the EMG test which I will probably have to wait months for is clear, then I am in the clear completely, however I am still left with the twitching, the cramps and the tremors which is annoying to say the least.
For what it is worth I have had muscular twitches of one sort or another ever since my teens. I first saw a neurologist in the 1980's who did not see them (they mysteriously come and go, sods law they are never there when you see a consultant) he just wrote me off as a clumsy person.
Nothing bad showed up the last time I had an EMG test about two years ago, but the twitches had not migrated to my face then.
If anyone wants to do some useful medical research instead of looking for cures for autism, they can go and find a cure for this condition, trouble is nobody cares about it, because it does not kill you, it is simply an unexplained neurological condition that is left over when you have eliminated all the bad diseases out there. Even House wouldn't have the answers for this one, but it seems there are lots of us out there with the same.
It has been called Benign Fasciculation syndrome a concatenation of words which I find effectively meaningless because benign it is not. Especially when you consider the anxiety it cause people like me who have access to google and a list of the worst possibilities. What scares the living daylights out of most people who have it, is the surface similarity of the symptoms to ALS, in my case with the tongue and face now chiming in, Bulbar onset ALS the worst kind.
Oh well, I am going in hospital for another operation on July 3rd. I will probably die of MRSA or septicaemia knowing the state of hospital hygeine these days. And if I live (which I probably will) there is no guarantee it will be any more successful than the last one, which still leaves me with some problems in my left hand.
The joys of being a pessimist and hypochondriac eh :(
Psst what's that I heard someone say, mercury poisoning ........ :)
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