Tuesday 30 March 2010

15: Gabriel- reflecting on

I spend the rest of Pentecost Sunday at home crying and screaming. I send a couple of angry emails and there were some difficult phone conversations. I was very hurt and angry

That entire summer I was deeply depressed to the point where I did not want to go out the door at times.

There were three difficult meetings in the year following our break up. Two were by chance.

Ultimately it was my Grandmother’s final illness and death that helped me heal. I realized she was a far more important person to me and that someone really truly loved me and that love would remain with me all my life.

I tried a year ago to get Gabriel to understand I was trying to forgive him but that he had caused me a lot of damage. He has completely destroyed me faith both in a higher power and in other people.

I have seen Gabriel in the distance a couple of times in the last two years as he works near me at a place I go to see exhibitions. The last time, in June just gone, I think he saw me- he would have seen my discomfort.

I saw a counsellor four times that summer and last year I went to see two counsellors. I still get deeply depressed about the situation

I would like to say I took something positive from the time Gabriel was in my life. I would like to say I understand why he behaved the way he did and can accept it. But I don’t. It has completely destroyed my ability to trust anyone. It has made me examine the difficult relationships I have with the men in my life such as my father. I see that there was a great deal lacking in these relationships and that I am not respected or valued as much as I should be. I am loved but taken for granted.

It took a lot for me to let Gabriel into my heart and soul and he was unable to treat either with respect or value. I have lost my faith in a higher power. I have lost a certain amount of faith in the love of others. Thankfully I do know deep down I am loved and valued.

Monday 29 March 2010

14: Gabriel (he ain't no angel)- pt.1

As I said below I have not had a sexual relationship. However I have had something akin to a romantic relationship four years ago when I was 33.

I met Gabriel in a library where a good friend works. One of my sisters had recently married and I had a feeling an important person was about to come into my life.

I met Gabriel in a library that a good friend works in one October evening in 2005. I was immediately attracted to him and send him a note (after debating with myself all weekend while visiting my aunts). My friend said he was shy and checked to see if he was single. One of my colleagues knew him and said he was sweet.

After a month we arranged to go for coffee. We agreed to meet again in a fortnight and I chatted with him for three hours. We ended up in a pub near High Holborn. It was a magical evening for me.

I found out that we had gone to the same university and both studied history. We had also done our masters at the same university- I had studied Librarianship, he had studied Archives. He was also the eldest in his family.

We met a couple of other times before Christmas (he invited me to see a film at Amnesty International and a carol concert where he worked). I found a cheap copy of a DVD of the film we saw together and gave it to him. He didn’t think to get me anything and I knew that this was probably not going to work out. I had a miserable Christmas and got very upset with my brother who I have a difficult relationship with. But Gabriel sent some nice emails about the DVD.

We met up in the new year and I asked him if he wanted to meet up once a week- he agreed). We went to a Persian exhibition one Sunday at the British Museum and went for a curry afterwards.

Gabriel is very religious and his church is an important part of his life. He would often want to discuss theology and religious matter when we met and often talked about his church. We both enjoyed going to talks, particularly on theological subjects. I thought I had found someone I had a spiritual bond with.
I was very happy to have Gabriel in my life. But I wanted to tell him about my TS. It is an important part of who I am and of my life. It was very nerve wracking to know when exactly was the right point to do it. I did not want to scare him off by getting too serious. I even got advice from my colleague who knew him (which meant telling her about my TS) and my friends with TS. One Sunday in early 2006. I went to his church and afterwards we went for a coffee and I told. He was very sweet and asked if there was anything he could do.

A couple of weeks later I invited him over to my flat for lunch. He kept waiting before setting off from his church I nervously prepared some pasta (which I tried out the previous day on my friends). He seemed to enjoy the meal. It was going to be Valentine’s Day that week so I snuck a card into his bag.

A couple of days later on Valentine’s Day, Gabriel came by my work. I will never forget seeing him at the bottom of the stairs after I had a meeting with my line manager. He had a puppyish look on his face and I threw my arms around him (one of the Library readers observed us!) After chatting he passed me the only Valentine’s card I have ever received. I treasured it.

In early March Gabriel had a birthday and I got him a couple of books and a card. I managed to spend some time with him and went to a meal at his church. I had a bad headache so went home. I often get run down and sent Gabriel an email explaining this but also telling him he was important to me and I wanted to spend time with him. His response was to tell me he found the email moving.

I had told my mum about Gabriel at Christmas. She was keen to meet him. So I agreed to bring him over on Mother’s day. I went to his church and gave him some chocolate and postcards I had got him on my trip to Bristol. We travelled over together to my parents. My beloved Grandmother was also there. The meal was a great success.

I continued to attend Gabriel’s church and we would also meet up during the week. Very little happened between us physically. Gabriel initiated a couple of hugs early on. I have to admit that I am shy about these matters and did not know what to do next when Gabriel hugged me. I desired him so much and wanted to hold him. But I noticed him looking sheepish when we went to a talk about Christian attitudes to sex. We also had limited time together alone. I was also tending to agree to do what Gabriel wanted. He did not show much interest in my friends the same way I took an interest in his.

I went to the Easter service at Gabriel’s church. He kissed me on the lips after the service. I gave him some chocolate eggs. I still get upset when I see Easter eggs in Marks and Spenser’s as I think of him. Gabriel did not want to come to Easter lunch at my parents (in the end this turned out for the best as it did not go well!)

In mid-April Gabriel and I went to a talk which a colleague’s brother gave at the Museum of London. I later heard this colleague thought we looked good together. This comforts me but also fills me with such pain at what could have been and what Gabriel still refuses to acknowledge.That evening when we were alone Gabriel put his arm around me when we were looking at the John Wesley monument. It was a thrilling, sweet moment and I wish that I had acted more on it.

That weekend I went on a long overdue and emotional trip to Dublin where I spend part of my childhood. Gabriel’s contract with his work was soon to come to an end and he had an interview while I was away. We exchanged texts. I carried Gabriel around in my heart while in Dublin and every moment I spent there was touched by the knowledge he was part of my life (I still carry these feelings round when I visit Dublin and to a certain extent Bristol).

We met up that Friday and I gave him some chocolate and a book. I told him I planned to try and get my own place. He said he was happy to drift. I have always had a feeling that from this point onwards things began to go wrong between us.

From this point onwards Gabriel became less and less keen to spend any time alone. I only usually saw him with his friends. He did not seem bothered by this. I told him I loved him – even if it was when I left him. I tried not to put any pressure on him but could not deny my feelings for him.

After a month I got tired of this. After church, while he and his friends were having a drink a female friend tried hitting on him and he did nothing about it. I was deeply hurt. When I got home I sent Gabriel an email saying it would be good to spend some time alone together and to clarify what was going on between us.. He did not bother to acknowledge my email. I eventually got in contact with him two days later and he came to my work. He still did not acknowledge my email and I had to raise it. He then asked to use my work computer to do a job application.

That Sunday we went to a café and he was only interested in discussing a prayer group at his church. I broke down and told him he was important to me and he held my hand for 20 minutes. I then had to go to work (it was the one Sunday of the year I had to work).

We met up again where he lived that Tuesday. We did not discuss our situation. That night he called up to ask me to tape something off digital TV for him which I did. He called me after to discuss programme. On Saturday he called to discuss the meal at his church the following day. I asked him to clarify what was going on between us and he said he would discuss with me the next day.
In Pentecost Sunday 2006 I went to Gabriels’ church. When he turned up he went to sit elsewhere but when I looked at him he gave a resigned look and sat with me.

When we went up to get our meals I tried to touch him and he brushed me away. I burst out crying in front of all the people in his church and he hugged me and said we would talk later.

We went for a drink the café I told him about my TS in. He told me he was very happy I had come into his life but ‘I wanted this to be a relationship but it isn’t’. I felt I had had been switched off and I had been completely drained. I swear something in me died that moment. I asked him if he couldn’t try to give things another go but he couldn’t reconsider. He asked me f I was OK. I told him I could not be friends with him and did not want to be in contact. I felt completely betrayed not because Gabriel ended the relationship but because he had taken so long to do it in spite of seeing how much distress the situation was causing me. I do regret being so angry in that moment but I am sure that things long term would have ended badly anyway.

Gabriel went to hug me when the conversation ended. I could not bear to have him hug me.

Sunday 28 March 2010

13: Before the Sixities Swung- some thoughts on some recent films


-An Education (Lone Scherfig)

Nowhere boy (Sam Taylor Wood)

-a Single man (Tom Ford)

Well enough of the TS stuff for a while! As noted in my review of 'It felt like a kiss' the early sixties are all the rage in the cinema at the moment. It may well be that at the beginning of a new decade and a new political era with the Obama presidency (which has frequently drawn comparisons with the JFK era) we are trying to understand this period through the prism of another era.

All three films explore the underlying social tensions of the era from different vantage points. Two are based on real life stories (Nowhere boy and An Education).

As a Beatles fan I was delighted that Sam Taylor-Wood had properly researched her Beatles history and reproduces faithfully some of the key moments in their early history. Paul gives his all on '20 flight rock' in the church hall, George strums 'Raunchy' on the top of a bus. Woods also picks up on Ian MacDonald’s' point that John and Paul bonded because of both losing their mothers in their teens. Wood focuses on Lennon’s' relationship with his aunt Mimi who raised him and his free spirited mother Julia. Mimi may have given John a stable home life but it was Julia who encouraged John as a musician. Both were strong women.

'A single man' is another debut film by someone who has made their name in another field- this time fashion designer and photographer Tom Ford. Many critics have found this film too stylised. However in a story which is about a man who has to put on a front everyday and conceal his true nature in the face of a hostile world. He is also obliged to look for beauty in the face of the bigotry he faces. I found Colin Firth's performance as George deeply moving and dignified, with his grief for his partner Jim. I also appreciated the senitive portrayal of a committed monogamous gay relationship. For me the film was deeply romantic.

My favourite sequence is when George gets his class to consider fear and 'the other', which speaks to the anxieties of the modern age and roots of unfortunately ongoing homophobia.

My favourite of all three films was 'An education'. Carey Mulligan gives a performance wise beyond her years as Jenny, a highly intelligent and bored teenage girl in early sixties Twickenham. It is interesting to compare Jenny's interest in French culture with John Lennon's interest in Rock and Roll, both speaking to a more liberated and exciting mind set. Jenny's relationship with an older man begins to show her a more sophisticated and liberated world. However this relationship threatens to undermine all Jenny's efforts to assert herself as an intelligent, independent woman. I was heartened by the ending which affirms Jenny as a strong independent person.

Both 'Nowhere boy' and 'An education' show that society is about to change and explore the motiviations of those who were at the forefront of these changes.

Saturday 20 March 2010

12: Continuing treatment- the talking cure


When I was 14, the same consultant who thought nothing of examining my lady bits in front of a group of medical students decided to respond to my mothers concern that I was withdrawn by sending me to a child psychologist. Funnily he never thought once to recommend that I be put in contact with another girl with TS of my age.

I started seeing Kay in the spring of 1987. At first I was going once a week. I trundled off from school on the underground up to the centre of London. After a few months this was increased to three times a week. This proved to be highly disruptive and tiring as I had the journey to and from the clinic in the centre of London. Later this moved to Peckham Rye. Still a long journey!

I would usually communicate with Kay by drawing pictures-often very elaborate. I would discuss how I felt about things such as my family and school and TS. I would discuss my imaginary TS friend who I would draw. It certainly thought me to reflect on things- maybe not always in a good way.

Along with seeing Kay, myself and my family would also see a social worker -way to make me feel like a family issue! Indeed the whole process did make me feel like I was somehow abnormal and needed to alter the person that I was.

While this had a role, it may have been as well to encourage my interests and certainly put me in contact with other girls with TS. Again Kay was not the problem, but the approach taken by my TS clinic was.

I would say Kay helped me to look at some things differently and it was in hindsight a useful experience.

I saw Kay for over four years and my seeing her only ended because I went to university. I have felt on occasions that it might be good to recommence such a relationship but it would need to be a lot less disruptive to my everyday life.

The main good point of going was getting to stay with my grandparents once a week. I formed a strong relationship with them both and look back with such fondness on the evenings I spend with them chatting. This has given me memories which ironically helped me more long term

11: Hormones pt.3- Feeling positive about HRT


As I discussed in a previous post many women with TS have a difficult relationship with HRT.
Many women do not like the effect HRT has on their weight. Some do not like the effect of taking progesterone. Some believe their bodies will look after themselves if left to themselves.

Some women find it frustrating to have to try several different types of HRT before they reach the right dose and find it hard to explain the issues they may have to their GP/Consultant.

I must admit to having severe misgivings. I have been on one brand of HRT them moved to another then back to the brand I was originally on. I have concerns about what the long term implications of taking HRT are.

However I have decided that for me taking HRT can be something which can be a positive action. I want to look after myself and give myself the best opportunity to be healthy when I get old. I have had periods off HRT and felt incredibly run down. I also have a slightly thinning of my hip bones. While it is my consultant that prescribed me HRT, it is my decision to take it. I base my decision on what I know from my experience and medical research. I accept the risks.

It would help if consultants could actually make the time to discuss with women what their concerns are and show the benefits of HRT. Women with TS in my experience are an intelligent bunch and keep themselves informed. We do not take any decision to do with our treatment lightly.

10: Hormones Pt. 2-Jagged little pill


Further to my last post, it is interesting to reflect on my hormone treatment up to my early twenties.

As I said in my earlier post I began taking oestrogen when I was about 13 and 15 when I began taking progesterone. After a certain point I was put on the contraceptive pill (marvelon to be exact)

Now what may you ask was someone who is infertile doing taking 'the pill'?

Well for a kick off, the contraceptive pill is used not just as contraception but also to help women with painful/irregular periods and other gynaecological conditions.

Secondly the contraceptive pill is free whereas ordinary HRT involves paying not just one but TWO prescriptions (something about the oestrogen and progesterone tablets being two separate treatments). An MP tried to alter this in a private bill a few years ago and was unsuccessful.

I did feel somewhat self conscious going to the chemist to get 'the pill'.

However the main issue with the contraceptive pill as a HRT treatment is that is not the most effective treatment. It only gives you 3 weeks hormones in every month, when proper HRT gives you four months.This has significant implications, not least for issues such as preventing osteoporosis.


I had been taken of 'the pill' and placed on HRT in the early 1990's when I agreed to go on a research project run under a private clinic. This was done by the doctor running the project, not my consultant.

Several years later at a TS international a speaker said that HRT was better than the pill. Many of the women were on the pill and promptly got themselves on HRT!

Tuesday 16 March 2010

9: Beginning treatment pt.2/Hormones pt. 1- My life as a hothouse plant


After a year on Oxandrolone it had come time for me to start hormone treatment. This was to ensure that I went through puberty like other girls my age. This firstly involved taking oestrogen but later involved taking progesterone to induce periods.

I had very mixed feelings about this. I felt highly uncomfortable about having to take tablets for my body to do something that happened to all my peers naturally. It felt like I was getting my femininity through a tablet. I wondered why I had to be put through the physical horrors of puberty if I was never going to be fertile. It took me some years to fully understand that there was more to it than that.

This was exacerbated by the way that I was treated at the TS clinic. The clinician would examine my breasts and pubic development every time I had an appointment in front of a group of medical students, often making comments such as 'coming along nicely!' I did not feel like a young woman but like a hothouse orchid the clinician was growing. The Clinician did not mean any malicious by their treatment. They were probably unaware just how inappropriate it was.

This had the effect of causing a serious disconnect between how I feel about myself both as a woman and as a sexual being. It has made me feel as though my femininity is something clinical and my sexual organs are a case study , not an integral part of my body and who I am as a person.
It has made me feel as though these parts of me are something which I can take no joy in and give no joy with. It has also made me feel as though any sexual partner would find me lacking as a woman or be repulsed by me.

I am also incredibly protective of my body and rather nervous about showing any part of it.

I am still a virgin at 37 and while there are a number of things which have lead to this, my treatment as a teenager at my TS clinic has not helped. It was only last year that a counsellor began to get me to explore myself as a woman and reclaim these parts of my body for myself. It is going to be a long journey!

I am not the only woman with TS who has been treated this way. I have heard various horror stories along these lines. Many women have serious issues with taking HRT. Some do not even bother. It is clear from the discussions I have had with them that the way they were treated either at time of diagnosis (for those who were later diagnoses) or the way they were treated while going through puberty is at the root of this. Not taking HRT is a way of reasserting some control over their bodies, trying to reclaim some kind of belief in their womanhood.

My current clinician is a very sweet person who is interested in trying to help women with TS overcome the issues they have with sexuality. Maybe looking at the treatment we received when younger.

Thursday 11 March 2010

8: Meeting Lucy

Some months after my diagnosis my mum took myself and my siblings to meet another girl of my age who had TS. We took a long drive out to Lucy's family.

Lucy was very pretty (still is!) and we hit it off very well. We sat in her room and chatted about our lives and families. We went for a walk around the area Lucy lived. Our mums watched a video on TS.

We watched a pirate copy of 'return of the jedi' with our siblings which we enjoyed. My brother made a cheeky comment about it being a pirate video.

Lucy' mum took a photograph of us all on her couch.

It was a very happy day. I was delighted to meet such a sweet person as Lucy. However my parent decided not to keep us in contact as they thought it would be a forced friendship. Again they thought they were doing the right thing and I appreciate it was not an easy call.

It would be several years until I met another woman with TS. This would be when I was at University, when I went to a conference. It would be 13 years until I met Lucy again.

Meanwhile I went through my entire adolescence without any contact with any other girls/teenagers with TS. I felt for years like I was the only person with TS in the entire world. I even created an imaginary friend with TS to get round my loneliness.


I still feel a sense of loss about the years of friendship Lucy and I could have had if we had been in contact through our teenage years and early twenties. and what strength we could have given each other. It would have certainly made me feel less of an outsider. Since Lucy came back into my life almost 13 years ago her friendship has given me so much.


I would advise any parents of girls and adolescents with TS to ensure that their daughters do have regular contact with other girls and teenagers with TS.

7: Starting Treatment


Soon after diagnosis I was placed under another hospital. I was put on Oxandrolone which is a an anabolic steroid.

My Mum trusted me to take the tablets myself. I would cut the tablets every night and take half. This helped me feel in control of the situation. I will discuss my attitude towards taking treatments in a later post.

I ended up becoming incredibly irritable and aggressive. I ended up arguing with other girls in my class and causing arguments. I was not warned that I would become aggressive on Oxandrolone. It was an interesting few months! It was interesting to note that even at this early stage doctors did not see the need to properly inform about the effects of the treatment they prescribed.

I did grow a bit as a result of using Oxandrolone. I had an advantage of having a tall father which means I have reached the respectable height of five foot!

After a year I was taken off Oxandrolone. Part of the reason for this was I was 13 and it had come time to go on Oestrogen...

Tuesday 2 March 2010

6: My Life with Turner Syndrome pt. 2- and Gnosis


There were several hospital visits in the months after my diagnosis. I was told that Turners Syndrome would mean that I would always be short. However I knew that there was a more serious issue. I did not as yet know what it was. But I knew that there was a serious problem.

On Ash Wednesday 1984, we had a biology class. We were told about menstruation. Enough of a shock as it was! Something clicked. Somehow this was connected to whatever the unknown problem was. I asked the teacher if my having Turners Syndrome would mean that I would not have periods. She said all girls got periods. I decided to confront my Mum that evening.

When I got home Mum was cooking dinner. She was cutting up onions. I told her 'I learnt about periods at school today'. I waited for her reply.

She turned around with tears in her eyes-' You won't have periods!' I will not forget the distress and pain on her face. It had obviously been a big shock for her.

She started telling me about how TS affects the reproductive system. My reproductive system did not work properly and I would not have children.

Through all of this I remained calm. I understood that things would never be the same but it was not the worst thing that could happen to me.

Somehow I had always known that something had been wrong. Finding out was reassuring. At least I could move forward from this moment.

Ironically at this point of my life I wanted to be a nun so as I saw it I was not losing out!

One of my aunts came into the kitchen and said she would be there for me.

My mum and me sat on the settee with the rest of my family after dinner and she whispered if I understood what it all meant.

At about 7pm my Mum took me to an Ash Wednesday service. We talked in the car a bit more.

I know and appreciate that the day was deeply painful for my Mum. But it has had a major effect on my relationship with my parents that they did not let me know as soon as I was diagnosed and that I was not more involved more with discussions with the doctors. It is not a rational feeling but I do feel less respected by my parents because of this.

When talking to other women with TS it is clear that many have a similar experience of 'the day' that they found. No matter what age we were, it was not an easy day.

But what I will say to any parent is that it is better to inform their daughter as soon as possible and to get her involved with discussions earlier rather than later. It will help her feel as in control of the situation as she can and allow her to move forward with her life. She will also know how much you respect her.