5: My life with Turners Syndrome- Pt. 1 Diagnosis

As I stated in my introduction part of why I set up this blog was to share my experience of life with Turners Syndrome (TS as I will refer to it)

I was not a 'sickly' child'. I did have feeding problems when I was a baby. I also had regular ear infections from an early age. But I was otherwise in good health and did ok at school.

My family moved around every couple of years while I was young. We lived in Ireland from the mid seventies to the early eighties. In 1983, when I was 11 we came back to live in London.

At this point my sister who was four years younger than me at 7 was already taller than me. My mother was understandably concerned. When she saw a BBC drama about a girl with a growth condition her concerns grew. She took her concerns to the school nurse at my school.

The nurse measured me and agreed that based on my parents height that I was not the height I should be. So I was referred on for tests at a local hospital.

I vividly recall the day that I had my blood test at the hospital. In the morning my Dad gave me a hug and told me it would not be as painful as an injection as the needle went into a vein to reassure me. My mum got me there in good time and I sat down to read 'What Katy did next' (I lost the book along with my Jane Austen bookmark). I played with some toys including a doll that reminded me of my great aunt's Japanese dolls which I was very fond of (they now live with me!) I looked out the window at the world outside. There was a considerable delay in my blood test and my Mum had to go and ask several times to get it done, getting more and more upset. Eventually a harassed blond doctor with glasses appeared and sat me by the window. She chatted with me and showed me the needle which she joked looked like a butterfly. I saw the vials fill.

Some weeks later Mum and I returned to the hospital for the results. The doctor announced tht news that there was indeed a problem. I had Turners Syndrome and would always would be small. My mum asked if there was something I should not know about the condition. The Doctor said there was. I was sent from the room.

Part of me is forever outside that room, not being allowed into the situation, having assumptions made about what is best for me. I do not blame my mum. She was in shock and had to do what was best given the situation. She was obviously deeply upset on my behalf.

My mother came from the room and tearfully held my hand. I knew something other than height was an issue. But I did not know yet.

To be continued..

4. My Curtis Mayfield Top ten

with The Impressions

1. Don't cry my love
2. Choice of Colours
3.People get ready
4. This is my country
5. We're a winner
6. Woman's got soul
7. This must end
8. The Girl I find
9. Keep on pushing
10. I'm so proud

Solo

1. The makings of you (from Curtis)
2. Keep on Keeping on (from Roots)
3. Right on for the darkness (from Back to the World)
4. Back to the world (from Back to the world)
5. New World Order (from New World Order)
6. We've only just begun (from Curtis Live!)
7. Eddie you should know better (from Superfly)
8.We got to have peace (from Roots)
9. So in love (from No place like America today)
10.We people who are darker than blue (from Curtis)

3.(June 1942)- 26 December 1999 Curtis Mayfield the Gentle Genius

Curtis Mayfield is absolutely my favourite artist of all time-no question

He is an artist who like no other explored and talked about the struggles and triumphs of the African American Community during the Civil rights era and beyond

I could discuss Mayfield as artist

-who not only wrote memorable songs for his own band the Impressions and for himself but who also wrote and produced for a host of other acts (Major Lance, the Stairsteps, the Staple Singers, Aretha Franklin, I could go on)

-his voice and his sweet unique guitar playing (developed because he tuned his guitar to a piano)
- his deeply poetic lyrics (writing songs based on Homer at a tender age) which were always filled with positive and uplifting messages

I could also discuss Mayfield as a man

-At the age of 17 he set up his own publishing company, realising that the key to African American empowerment lay in owning their own resources

-who gave messages of pride and encouragement to the African American community years before it was fashionable even if meant getting his records banned (as We're a winner was)

-Who lived his life with dignity and compassion for all, and fought for the dignity of all as Danny Kelly put it

2: Adam Curtis- 'It felt like a Kiss' Review

Having watched Adam Curtis' last three TV series - 'The century of self', 'The power of nightmares' and 'The trap' I was keen to watch the film that was connected to the show he collaborated on with Punchdrunk last year in Manchester.

The film takes its title from the infamous Crystals number 'He kissed me and it felt like a kiss' which Carole King wrote in response to discovering that her babysitter Little Eva was being regularly beaten by her boyfriend.

This is a hard film to describe. I could call it the Rock and Roll years as done by John Pilger.

It covers the period 1958-1969 (i.e. 'The golden age of pop) and explores the linkages between US hegemony and power in these years and pop culture.

As usual Curtis uses archive footage to create a deeply uneasy dreamlike state. However this time is closer to a nightmare.
The film fits in nicely with the current fascination with the early sixties ( a la Mad Men, An Education, A Single Man) continuing to explore the tensions within a society on the cusp of seismic change.

I particularly like how Curtis uses the story of Enos the Chimp who was the first primate in space to weave together the story of the Superpower space race, the spread of the HIV virus and the CIA's involvement in the violent overthrow of the Congo's first prime minister Patrice Lumumba.

Curtis finds links between the unlikeliest of people. For example he links Osama Bin Laden and the Mason family by way of the TV show Bonanza (It was Bin Laden's favourite show when he was ten and the Mason family would end up living on its abandoned set).

Curtis also includes some draw dropping footage of 'The Long days' a propaganda film former failed CIA agent Saddam Hussein commissioned 'Dr. No'/'From Russia with love' director Terence Young to direct. Think about that one for a minute!

Curtis also has a very interesting take on the assassination of John and Robert Kennedy, showing how people projected their own particular agendas/paranoia on these events.

Indeed mental illness is a major theme of the piece with the well documented woes of Brian Wilson and Phil Spector with Richard Nixon and the founder of the CIA's mental health issues.

The film does have some flaws. There are a couple of clips of H. Rap Brown and a Black panther and reference to Martin Luther King but there could have been more references to the Civil rights movement.

The film looks at the social repression of women (symbolised by recurrent footage of a depressed housewife and women acting out their frustrations in therapy) and gay men (symbolised by the story of Rock Hudson and Lou Reed's receiving ECT to 'cure' him of his homosexual feelings.

Curtis also uses footage of contemporary adverts (Mad Men again!) to show how advertising agencies began to exploit peoples' desires and fears.

The film is bookended by the same clip of Doris Day waking up in room '2001'. At the beginning she is woken by the strains of Fats Domino's 'Let the four winds blow' (symbolising both the beginning of the rock and roll era and the social changes that were about to occur in race/gender relations). At the end a far more ominous sound wakes her, fulfilling the prophecy of the room number.

However this is overall an extraordinary piece, the best dissection of the American psyche since Michael Moore's 'Bowling for Columbine'

Do check out Adam Curtis' blog on the BBC website where he has posted the film.
 http://www.bbc.co.uk/blogs/adamcurtis/

1: Hi I am a 37 year old woman living in deepest South London.

I enjoy trips to the Rizty Cinema and the British Museum and Library

I hope to use thsi blog to record my cinema and reading experiences!

I also hope to use this blog to talk about my life with Turners Syndrome


Anyway here goes

Most recent Books read

Anne Tyler: The accidental tourist

Joe Sacco: Palestine
Having read Marjane Satrapi's 'Persepolis' and Art Spiegelman 'Maus' recently I was keen to read this.