As you may have noticed I did not put much on this blog last year- there is a reason!
While 2011 was not exactly the worst year of my life it would have to be something of a contender! There has been a highly challenging situation which I have had to deal with.
I had a number of minor problems at home (bed bugs, plumbing). I have had somewhat more testing health issues (Plantar Fasciitis and IBS).
I have also had challenges in some of my closest friendships and family relationships. This is not to say that I do not love those friends. It is just that we are all going our own directions in life and sometimes that has been that I have had to walk certain paths on my own. Sometimes there are problems I feel that I don’t want to share for a variety of reasons. I realise that in the last year I have been withdrawn and on occasions a bit sullen. But I have needed distance in order to re assess how I view myself and to see more clearly how others perceive me.
I cannot discuss the main difficult situation that has been an issue in the past year. All I can say is that if it had not been for the support of various people things would be a lot worse.
Two positive things happened in my life last year. I got to spend quite a lot of time with the older of my two sisters and her baby son. It has been one of the joys of my life over the last few years is deepening my relationship with this sister. The other was my other sister getting married.
I am learning each day to accept myself more and to actually take pride in myself. I am learning that actually I have a lot to offer the world. I am learning to become the person I truly want to be and trust in the friendship and respect of others
Sunday, 29 January 2012
Saturday, 28 January 2012
44.The needs of parents and the needs of women with TS...
As I began to indicate in post 40 below, the needs of parents of girls with TS and the needs of women with TS are often quite different. This is something which causes a considerable amount of tension, and one of the main reasons why I am not involved with and have no desire to be involved with either of the two support groups connected to TS in the UK.
Parents often joint a support group after their daughter is diagnosed with TS (this includes prenatal diagnoses). They are usually looking for practical information about TS, usually about medical treatment and educational support. Some are also concerned that their daughters get to meet other girls with TS. While some parents remain involved with the supports groups over a long period, in many cases the involvement is temporary, Once the parents have the information and support they require, there is no further reason to be involved.
Most women with TS get involved support groups because they are looking for emotional support. They want to form friendships with other women. They also need practical support with issues such as employment.
However there are some even more serious issues in the way that parents of girls with TS and Women with TS approach the condition. Indeed there can be major differences.
As I have discussed below, finding out that their daughter is infertile can be incredibly difficult for some parents. In spite of their best intentions they can project feelings such as distress, disappointment and guilt. These feelings can be very quickly picked up by a girl/woman with TS and compound her own feelings.
In addition parents can be unnecessarily protective of their daughters. I have seen several cases of this up close! While this is well intentioned this can have a serious effect on the self esteem and independence of the daughters.
There is finally the issue that parents tend to see that TS is only a condition that affects their daughters until late adolescence. They can have difficulties understanding the continuing medical, not to say practical issues their daughters will face.
This is not to denigrate parents of girls and women with TS- I have been fortunate to meet several wonderful parents. But it is important that this issue is acknowledged.
It would be interesting to see what a national support group which was headed by a woman with TS would be like. All I can say is that I am grateful every day that I am involved with a group of wonderful women, who just happen to have TS
Parents often joint a support group after their daughter is diagnosed with TS (this includes prenatal diagnoses). They are usually looking for practical information about TS, usually about medical treatment and educational support. Some are also concerned that their daughters get to meet other girls with TS. While some parents remain involved with the supports groups over a long period, in many cases the involvement is temporary, Once the parents have the information and support they require, there is no further reason to be involved.
Most women with TS get involved support groups because they are looking for emotional support. They want to form friendships with other women. They also need practical support with issues such as employment.
However there are some even more serious issues in the way that parents of girls with TS and Women with TS approach the condition. Indeed there can be major differences.
As I have discussed below, finding out that their daughter is infertile can be incredibly difficult for some parents. In spite of their best intentions they can project feelings such as distress, disappointment and guilt. These feelings can be very quickly picked up by a girl/woman with TS and compound her own feelings.
In addition parents can be unnecessarily protective of their daughters. I have seen several cases of this up close! While this is well intentioned this can have a serious effect on the self esteem and independence of the daughters.
There is finally the issue that parents tend to see that TS is only a condition that affects their daughters until late adolescence. They can have difficulties understanding the continuing medical, not to say practical issues their daughters will face.
This is not to denigrate parents of girls and women with TS- I have been fortunate to meet several wonderful parents. But it is important that this issue is acknowledged.
It would be interesting to see what a national support group which was headed by a woman with TS would be like. All I can say is that I am grateful every day that I am involved with a group of wonderful women, who just happen to have TS
Thursday, 26 January 2012
43: Bettye Lavette - "Isn't It A Pity" 11/12 Ferguson (TheAudioPerv.com)
Here is somthing that combines three things I love- soul queens, the music of George Harrison and Ireland...
Wednesday, 25 January 2012
42: What I have been reading
During 2011 I really enjoyed reading Armistead Maupin's 'Tales of the city' novels (read all of them thanks to a kind colleague!) and all six volumes of Maya Angelou's autobiography- what an amazing woman and such an astonishing story.
I have just begun reading 'The girl' trilogy'- it promises to be great.
I loved the 'Dykes to look out for' anthology by Alison Bechel along with the deeply moving 'Funhome'
I have just begun reading 'The girl' trilogy'- it promises to be great.
I loved the 'Dykes to look out for' anthology by Alison Bechel along with the deeply moving 'Funhome'
41: What I am listening to!
Apologies for not posting for a while- had an interesting 2011 (that is one way of putting it!)
I have got further in feminism in the last year - helping out with events and stuff and really enjoying my book group!
As a little post here is some stuff I am listening to at the meoment
George Harrison- Cloud Nine/ All things must pass- oh the memories, the memories!
Beatles- The Beatles (White Album)- ditto!
Cardinal- Hymns - every bit as good as the original (which is one of my fave albums!)
Beach Boys- Smile - every bit as astonishing as I hoped it would be
Doris Troy- Anthology - We miss you Doris
I have got further in feminism in the last year - helping out with events and stuff and really enjoying my book group!
As a little post here is some stuff I am listening to at the meoment
George Harrison- Cloud Nine/ All things must pass- oh the memories, the memories!
Beatles- The Beatles (White Album)- ditto!
Cardinal- Hymns - every bit as good as the original (which is one of my fave albums!)
Beach Boys- Smile - every bit as astonishing as I hoped it would be
Doris Troy- Anthology - We miss you Doris
Saturday, 12 March 2011
40: The media and TS
Recently there was coverage in the UK press about Penny Jarvis Stephens freezing her eggs for her daughter Mackenzie Stephens, a two year old girl with TS. While I have my own thoughts about this issue, it has also made me reflect again on the whole topic of the way Turners Syndrome is discussed in the media
In December 2009, there was an episode of ‘Casualty’ which included a character with TS. However this character was portrayed as emotionally unhinged by her infertility to the point where she snatches a child and later causes a fatal car accident in which a baby dies. This caused a considerable amount of distress and offence to the women with TS who saw it. When I complained to the BBC, the response was highly patronising and condescending. The medical researcher had not even got the fact rights as the actress portraying the woman with TS was of normal height! What was so offensive about the storyline was that it portrayed infertility as a form of mental illness.
I also heard of possibly the most surreal reference to TS. This was on the Jeremy Kyle show! A man and woman were in dispute about the paternity of a small girl (so far, so Jeremy Kyle) but this girl had TS and the mother accused the father of not being supportive when the girl needed so much medical attention. Lucy managed to see some of it and she told me how the woman being overly dramatic about the condition saying her daughter needed surgery on most major organs! TS is a complex condition but surely not to this extent!
Finally we return to the story of Penny and Mackenzie Stephens. Again the focus of the story is on infertility, even though Mackenzie also has other health issues such as restricted hearing. The story is also told from a parents’ perspective
You will notice above that when TS is discussed that 1: it is usually in the context of infertility, how terrible it is and how it needs to be overcome 2: Parents, usually mothers get to speak for their TS children rather than having a woman with TS talk about the condition itself. This is unfortunately true in most coverage of TS, when it occurs.
Lucy and myself have remonstrated with a parent involved with a support group about the sort of stories she was involved with putting out in the media. These focused both on her daughters’ infertility and ‘behaviour issues’ (she was made to critise her own harmless behaviour on a tv documenatry). This cannot be helpful over the long tem.
There was another occasion when I was approached to talk to a populist magazine. In the end, the magazine decided to interview another woman with TS who had adopted a family of three children with her husband. I was grateful at least on this occasion a woman with TS got to tell the story, even if the focus was yet again on fertility.
The one time that TS made the front page was 14 years ago when David Skuse presented his research on TS and social skills. This resulted in a number of very unhelpful articles such as this one from Time which argued that women with TS are socially impaired, and worse still that this is somehow because they are more like men than other women. It may be a good headline for a news reporter but it is women with TS who have to live with the consequences of these types of stories. It makes it that much harder to be open about TS publicly
http://www.time.com/time/magazine/article/0,9171,986575,00.htmlat
Andy Warhol's assertion that there is no such thing as bad publicity is not necessary true!
Recently a TS friend appeared on See Hear as she has very restricted hearing. It was good that another health issue connected with TS got some coverage, particualrly as hearing issues are something which have a considerable impact on many women with TS.
There are many medical issues which do not get the media coverage they deserve or that get misrepresented. There are also the additional issues of the way that the media portrays women. There is no easy solution to this issue- only to try and make sure we raise our voices and make ourselves heard
In December 2009, there was an episode of ‘Casualty’ which included a character with TS. However this character was portrayed as emotionally unhinged by her infertility to the point where she snatches a child and later causes a fatal car accident in which a baby dies. This caused a considerable amount of distress and offence to the women with TS who saw it. When I complained to the BBC, the response was highly patronising and condescending. The medical researcher had not even got the fact rights as the actress portraying the woman with TS was of normal height! What was so offensive about the storyline was that it portrayed infertility as a form of mental illness.
I also heard of possibly the most surreal reference to TS. This was on the Jeremy Kyle show! A man and woman were in dispute about the paternity of a small girl (so far, so Jeremy Kyle) but this girl had TS and the mother accused the father of not being supportive when the girl needed so much medical attention. Lucy managed to see some of it and she told me how the woman being overly dramatic about the condition saying her daughter needed surgery on most major organs! TS is a complex condition but surely not to this extent!
Finally we return to the story of Penny and Mackenzie Stephens. Again the focus of the story is on infertility, even though Mackenzie also has other health issues such as restricted hearing. The story is also told from a parents’ perspective
You will notice above that when TS is discussed that 1: it is usually in the context of infertility, how terrible it is and how it needs to be overcome 2: Parents, usually mothers get to speak for their TS children rather than having a woman with TS talk about the condition itself. This is unfortunately true in most coverage of TS, when it occurs.
Lucy and myself have remonstrated with a parent involved with a support group about the sort of stories she was involved with putting out in the media. These focused both on her daughters’ infertility and ‘behaviour issues’ (she was made to critise her own harmless behaviour on a tv documenatry). This cannot be helpful over the long tem.
There was another occasion when I was approached to talk to a populist magazine. In the end, the magazine decided to interview another woman with TS who had adopted a family of three children with her husband. I was grateful at least on this occasion a woman with TS got to tell the story, even if the focus was yet again on fertility.
The one time that TS made the front page was 14 years ago when David Skuse presented his research on TS and social skills. This resulted in a number of very unhelpful articles such as this one from Time which argued that women with TS are socially impaired, and worse still that this is somehow because they are more like men than other women. It may be a good headline for a news reporter but it is women with TS who have to live with the consequences of these types of stories. It makes it that much harder to be open about TS publicly
http://www.time.com/time/magazine/article/0,9171,986575,00.htmlat
Andy Warhol's assertion that there is no such thing as bad publicity is not necessary true!
Recently a TS friend appeared on See Hear as she has very restricted hearing. It was good that another health issue connected with TS got some coverage, particualrly as hearing issues are something which have a considerable impact on many women with TS.
There are many medical issues which do not get the media coverage they deserve or that get misrepresented. There are also the additional issues of the way that the media portrays women. There is no easy solution to this issue- only to try and make sure we raise our voices and make ourselves heard
Sunday, 2 January 2011
39: My 2010
As 2010 draws to an end, there are a number of things I have been reflecting on.
During 2009 I went to a counsellor to discuss how I felt about various issues including my relationships with my family, friends and work colleagues and the ongoing emotional fall out around my relationship with Gabriel. I found the counselling useful up to a point and have tried to use it to move forward. I have begun to look at some of my insecurities and how I can overcome these.
Just as well as this year has certainly brought its challenges- as my friends know! There has been a difficult situation at work and at home (dealing with a neighbours’ behaviour) as well as my personal relationships with family and friends.
I know that I can be oversensitive to criticism. I know that I can often misread others’ intentions. I must continue to learn not to allow the negative attitude I have towards myself affect my relationships with others. I have learnt to step back and enjoy seeing my friends and family as and when is possible and not take it personally if people are busy or take time getting back to me. I have learnt to trust people more. I know I have a long way to go. I still need to look at my insecurities and whether I deal with particular situations well. But I feel like I am beginning to move towards the sorts of relationships I want with others and be more relaxed about how people I care about view me.
Then there is the other aspect of my relationships of others. I have allowed others to push me about and put up with bullying/belittling behaviour. However this year I have started to take action in situations where others have behaved aggressively towards me and stepped away from relationships where there has been aggressive or belittling behaviour. This has not always been easy. But I am glad that I am developing enough self respect to know that I do not have to accept this behaviour. I have learnt that I can get help.
All in all, in the past year I have learnt to develop self-respect and assertiveness. I owe this not just to myself but to others who care about me too
During 2009 I went to a counsellor to discuss how I felt about various issues including my relationships with my family, friends and work colleagues and the ongoing emotional fall out around my relationship with Gabriel. I found the counselling useful up to a point and have tried to use it to move forward. I have begun to look at some of my insecurities and how I can overcome these.
Just as well as this year has certainly brought its challenges- as my friends know! There has been a difficult situation at work and at home (dealing with a neighbours’ behaviour) as well as my personal relationships with family and friends.
I know that I can be oversensitive to criticism. I know that I can often misread others’ intentions. I must continue to learn not to allow the negative attitude I have towards myself affect my relationships with others. I have learnt to step back and enjoy seeing my friends and family as and when is possible and not take it personally if people are busy or take time getting back to me. I have learnt to trust people more. I know I have a long way to go. I still need to look at my insecurities and whether I deal with particular situations well. But I feel like I am beginning to move towards the sorts of relationships I want with others and be more relaxed about how people I care about view me.
Then there is the other aspect of my relationships of others. I have allowed others to push me about and put up with bullying/belittling behaviour. However this year I have started to take action in situations where others have behaved aggressively towards me and stepped away from relationships where there has been aggressive or belittling behaviour. This has not always been easy. But I am glad that I am developing enough self respect to know that I do not have to accept this behaviour. I have learnt that I can get help.
All in all, in the past year I have learnt to develop self-respect and assertiveness. I owe this not just to myself but to others who care about me too
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