I have come to check out the weather forecast for tomorrow and as usual got distracted and am now adding this new page to "My Story". Inspired by the amount of people who tell me that my story is very sad. Indeed it was very sad for a long number of years, but those experiences have made me the character I am today and although
I want to spend some time in Spain, (preferably the south coast)to write a book. It's quite remarkable that most of the books pertaining to Klinefelter Syndrome are written by people who do not have Klinefelter Syndrome and maybe it's high time we did something to redress the balance. So, that is something I ought to do and fairly soon, before I start forgetting what I have learned. If you are reading this and you have a small hideaway in the south of Spain or indeed any other coastal region in warmer climes than the British Isles, do please get in touch! So!, why the need for another page of "My Story", well I don't want people to read my story and go away thinking how sad I must be,
My life is a rollercoaster of ups and downs, remember puberty, unfortunately that is one thing I can never forget.
Since my trip to the USA in 1999, I have learned a wealth of information regarding Klinefelter Syndrome/47,XXY.
So much, that I am now planning to put my knowledge to better use by setting up an Information Exchange both on the Web and in society at large.
My intention is to compile a database of members of the medical profession who
take a keen interest in the developing world of Intersex research
We are not freaks, we're not idiots and we are not going to just sit back and be labeled as such. On the contrary
Since my last update there have been some changes in my life.My phycisians have now taken on board the fact that there may well be a link between TRT and the raised eye pressure.
I recently spent a fabulous week in the company of some equally fabulous gay men
ECC and having recharged the batteries, the challenge of the medical profession looms once again.
Just before Christmas I briefly lost the power of my lower legs and spent a short time in hospital. I eventually got my Home-Care assesment, but as I am not in imminent danger of being taken into care, it appears that I don't qualify. Which is really quite strange when the whole idea of Home-Care is to assist people to remain in the community, with the emphasis on closing down Institutional Care!
01/05/02 The last six months have been hectic and somewhat exciting, even though I am now virtually unable to walk. Most people seem to be quite upeset when I tell them about the chair, but for me it can't come too soon, because without transport However since January, I have been attending a computer course, a drama class
24th May 2002 I am still waiting patiently for my wheelchair to be delivered. Having to remain indoors for days on end is driving me crazy.
I suppose I should be grateful for small mercies, after all I am still alive and life, well my life is fascinating. June 18th 2002. Well I now have the wheelchair, but in my haste in accepting a manual self-propelled type chair,
The only way I can see out of it now is an electric wheelchair, but at a miminum of £1,700 to buy,
On a brighter note I may have found love on the Internet, but I am keeping shtum as I don't want to tempt fate
1st September 2002
Well not much has changed in the last few months, love on the Internet is still afoot, but I am still I now have a home-help which is okay, but
I am hoping to become involved with the Glasgow LGBT Centre again, I hope I don't regret it all over again though.
Now into March 2003. I still don't have a power chair,
I've also finally got the DLA, but no PA as yet. A couple of friends were helping me to get out and about
It looks like I am going to have to hire someone from an agency.........
6th December 2004: The subject matter was 'Living with Intersex' in a production named SECRET INTERSEX
The filming took place over July and August 2003 and the finished production was broadcast to the nation (approximately 9 million viwers tuned in) Despite positive and/or neutral feedback from the vast majority of people who watched it
Midnight - Saturday 1st September 2001.
my physical and mental health will never be 100% good, I am not a physical wreck just yet, nor do I ever intend to be!
because my life is anything but sad. On the contrary, my life is Okay.
but as it is of my own doing, there is no one to blame but myself.
I experience it every day!
It drives me beyond belief sometimes,but it gives me an incredible insight into how the relationships between teenagers and adults develop.
My peer group ranges from age 17 to about 45, therefore what I have is a rare gift, and often quite amusing.10/11/01
and to lobby parliament, as well as society.
the majority of Intersexed people are highly intelligent individuals.
The upshot of which I am having a Glaucoma Operation on 16th January 2002!
Having come thus far, I am not going to back down!
I have also since negotiated a more comfortable TRT regimen and use Sildenafil (Viagra). I still however do not have a regular partner, but my sex life is adequate and very adventurous. You'll have to visit my Gay Website The Banana Bending Company if you want any of the finer details!
I must admit though that it would be nice to have a regular partner with whom I could share my whole being, instead of just having a sex life with no real commitment.
Now I am reduced to getting around on crutches.
One thing is for sure, I do need the assistance of another person.
I still have the crutches for moving around indoors. I am waiting for a wheelchair to arrive, to allow me to get out more.
I am literally imprisoned in my own home.
and I am involved in an exciting new project that will culminate in a 2 day Radio Broadcast, City wide in September. Under the auspices of the Birds of Paradise Theatre Company and courtesy of the Scottish Arts Council Lottery Fund,
we are a group of people who have physical disabilties, learning everything there is to know about operating a radio station.
At least with the use of a wheelchair I would have the ability to go into the main shopping area's of the city,
but until the chair comes there is nothing I can do but sit tight in the hope that someone may come to visit.
I'm getting a bit sick and tired of people saying to me that I should get out more. They say it, but they don't come up with any ideas as to how I'm going to manage it.
More changes are afoot, but I don't want to say too much just yet until I am sure that my plans come to fruition.
I very quickly discovered that I am unable to propel the damn thing very far.
I don't have the strength in my arms to go up inclines such as ramps (even very slight ones)!
I find the chair tires me out as much and sometimes more, than hobbling around on crutches. So now I am almost completely trapped in my concrete box
(my flat) unless I have transport.
However I am trying to keep smiling in the face of all this crap!
and £72 a month to lease, I don't think I'll be going anywhere under my own steam for a while yet.
given my track record!
not going to divulge anything yet!
This is my trusty steed for the time being,though hopefully the electric version
is not too far off.
when I get the DLA I intend to hire a PA to assist when I go outdoors locally or when I travel. I am hoping that that person can work
in association with my home-help.
This is yours truly in my hot-wheels (it takes me about 2 hours to travel 1 mile) and very sore arms afterwards too!
but I am waiting for an assessment at the Southern General hospital for such
or an aerodynamic manual chair.
I've been assigned a social worker at last and he is currently carrying out the comprehensive assessment
that should have been done last August!
but alas they can no longer sustain that. Now I am trapped here. I've not been out for almost 2 weeks
and it's driving me round the bend!?!?!
Throughout the summer of 2003 I was the subject of a documentary
produced by Wag TV for Channel 4 (UK) Television.
on Tuesday 6th April 2004.
The programme was in 2 parts, the first of which concentrated on children who have Intersex conditions
which was shown the previous night - Monday 5th April 2004.
In the 2nd programme I was featured along with 2 other people.
All 3 of us have Klinefelters Syndrome.
one organisation, notably the Klinefelter Syndrome Association saw fit to make an official complaint to Ofcom.
The reason being is that the XXY community (Worldwide) is divided on the issue of Klinefelter's being an Intersex condition.
Ofcom's Decision Here
(Scroll down to page 13 of this PDF file)
2 B Continued
