The Suitcase Singers

Today is my Birthday and I am going out tonight for dinner in a really fabulous place, with Barry, my lovely younger sister and 4 other good friends. I am so looking forward to it.

Things are finally looking up since the last few years since my diagnosis and I have my friends partly to thank for this, and my own personal resilience and survival skills.

I am so lucky that since going through total despair at some point due to the fact that since my diagnosis, and at a time when I most needed friends support I found myself for the first time in my life without any friends, that I now have good friends.


This was partly because just co-incidentally  at the same time as my diagnosis 4 years ago my few good friends moved from the area, three abroad out of the UK, others out of the village and too far away to keep in regular contact or their lives moved on as because like mine their children had grown up and many left home.

But for a long time I also became isolated and friendless, which was  in part due to HIV.
As those that were still around just stopped relating to me or coming round or calling and I know that this was for many due to us finding out we were HIV positive.

This was not always malicious or due to direct discrimination. A lot of the time it was because they just could not deal with it themselves and many find it very difficult to have a friend with cancer and can not deal with that, but to have a friend with HIV, and one like me who went open about being HIV positive, was for many just too much to deal with.


I also found I could not make new friends.
This was, I so agree,  partly because I was very needy in terms of needing friends and it showed and put potential new friends of women around my age off. But also because I refused to hide away in shame because I know had HIV and would try to treat it just as any other illness.

So when other women mentioned the sorts of illnesses and conditions many at our age start to get, arthritis ( which I also have ) breast  and cervical cancer and treatment etc , I would talk about my HIV just the same as they would talk about this as I refuse to treat HIV any differently.

As I have often pointed out over 70% of cervical cancer is caused by  the virus HPV, which is also sexually transmitted almost exclusively. Yet we all go for our pap smears and if you have cervical cancer and especially if you are having treatment most women will talk about this to their friends or even just acquaintances that are women, if the subject of health comes up.

I just tried to treat HIV the same.
But I cannot tell you the looks I saw on others faces when I started to talk about my HIV diagnosis, how ill my husband had been and the treatment.

And the memory of being directly snubbed by many women I was trying to make new friends with at that dreadful time will live in my memory for the rest of my life.

I especially remember the choir, Suitcase Singers, that I joined shortly after my diagnosis and before I realised how people could react to someone openly HIV+.

I did not join this choir solely to make friends, I truly love to sing,  I may not be able to sing? But I still love to sing.

However I also was trying to be proactive at the time and meet more women my own age in my local area, so I joined this and a few other groups where I may meet them. But as I was only just on HIV meds, still feeling very sick and unwell especially in the mornings this took a LOT of effort on my part.

I did not actually tell everyone directly at first in the Suitcase Singers  about my status and only in fact mentioned it later for a while when women in the choir talked about their own brushes and struggles with illness. But I had done an interview shortly before I joined the choir for a local community radio on HIV and being diagnosed HIV and the presenter, who seemed OK at the time, also joined this choir when I did. She already knew the choir leader or seemed to and other women in there and I cannot prove it but I think she told people there that I was HIV positive, as things were  'not right ' from the start.

If I am wrong and she did not, I truly apologise and will not mention her name. But even if she did not , she was a big part of that choir and her own attitude towards me was not the best. She is a lot younger I have experience of life beyond many and I am no ones fool yet I felt patronised and dismissed by her - and I know this was happening, this was not my imagination for sure.


This choir the Suitcase Singers was mostly made up of women around my age or a little younger and we would go for coffee after rehearsals in the cafe under the  rehearsal room at the Zed Shed  and and everyone else would be in groups chatting away and I most of the time, and from the first, I  would be on a table on my own.





There was even a women there from my own village of Porkellis for a while, and I know people who know her and I know where she lives. But she sure snubbed me! She was fairly new to the choir at the time and I could see on her face when I sat next to her, told her I lived just down the road from her, she just simply did not want to be associated at all with someone that the rest of the Choir snubbed!

I guess she does not know what I did for the village of Porkellis?  Or care?

How I spent years raising money for services there, how I was chair of the Porkellis Village Hall Committee for over 10 years, have now lived there for over 20 years, ran many events in the village, was known and in the main l was once liked by all.

But your past achievements and reputation count for nothing to many when you are diagnosed HIV + I have found

I agree I was also in a very bad way emotionally when I joined the Suitcase Singers, and I did bring some of this on myself as I just wanted to be accepted and could not deal with it when I was not

HIV is a very hard diagnosis to deal with. My moods and emotions were, I agree, hugely up and down and being felt unwelcome in this choir every time I went was not helping one bit!

And due to this while at a choir gig, where  my husband came with me for support, but was in a bad mood himself - he to had a LOT to deal with and he did not like the way I/we were treated at this gig by the rest of the choir. He could see very well that no one wanted to talk to us ( Barry is nobodies fool) and no one sat with us in the pub after the choir and he felt very snubbed too.

But I wanted to persevere - but he was not supportive about this that night as his view was 'these people are not worth this' just give up and forget them'

And I basically - and much to my regret  now -  But I lost it as I so wanted his support that night in this and told him to 'fuck off' if he was not going to support me in trying to be part of this choir I so wanted to be an accepted part of .

We were sitting  away from the main group of members at the time and this was directed, and not loudly either, to my husband and my husband only!


After this I realised that I was so not accepted and welcome I tried to  be proactive and tell those in the choir and and the Musical Director in a group email that was going around choir members at the time a bit about my diagnosis of HIV, how we got it, what it was like to live with the drugs and how distressed I was at that time.

I thought if they knew the background the choir members and musical Director Claire Ingleheart may understand me better and be a bit more accepting - some of whom have other illnesses , conditions and disabilities.

 And I tried also to be very supportive about what they face. So  what I wrote in this group email was not all about me. I wanted to support others in the choir to that I could see were also struggling for other reasons. One or two were in a wheelchair and could not go to some gigs as there was no access, others I knew had mental health issues and I tried to support them too.

But this was a BIG mistake!
Claire Ingleheart told me that I had no right to write anything on that group email and certainly not to share this 'personal' stuff. That the email list was just for her to tell the choir when the gigs were and not for anyone to interact!

I pointed out that she had included all the emails of all the choir in every email and not blind copied them,  that made it a group email so I had no idea it was not a email sharing list. And I had honestly thought that part of the purpose of this email list was for the choir to interact and get to know each other better and support each other with any difficulties we may have arising out of attending the choir!!

But this was not so , according to Claire Ingleheart,  and I quote ' this is MY choir and not a community/therapy group' and basically her word goes!

Well I had also, up to then thought it was a community choir and community groups of all kinds in my experience have as at least part of their remit , to be therapeutic to its members.

I honestly thought this was a community choir with partly a therapeutic content as I could not see how few but those who were unemployed, or lonely and isolated, or disabled, or had mental health or other issues or were ill, or were isolated women with young children would be free to come to a choir practise on a Thursday weekday at 9.30am???

It did not occur to me at all it was a private choir and her own personal way of making money !!!
In fact I thought it was a community choir backed by Arts for Health Cornwall http://www.artsforhealthcornwall.org.uk/ as many of their groups meet in the same hall as the Suitcase Singer -

Sadly I got that VERY wrong as well! But as I was not told how was I supposed to know this was a private choir and not a community choir with partly a therapeutic aim??


It is fine to make money by running a choir but I wish it had been made clear when I joined!

And she also added another member -who I found out later was  a close friend of Clarie's - overheard me telling my husband to F off at the last gig and told Claire Ingleheart. Only it was reported that I said this to a stranger?????

She then said due to this and my 'inapropriate' emails about 'personal issues' to HER choir

And I know what she meant by that is I had mentioned HIV and that it was sexually transmitted to me???? 

And because I had used a swear world while at a gig to a strange man!!!

The person who passed this on to her had not even bothered to work out it was my husband before they told tales of what was said quietly in a personal conversation between me and my husband of over 20 years!!!!

Claire Ingleheart then asked me to leave the choir as she said - I was not a suitable person to represent 'her 'choir!!

But no understanding of how I had been snubbed by her and all others and for many months and what this can do to a person?

She phoned me to say I had to leave but I fought this - and I also bent over backwards and profusely promised to try very hard just come along to the choir, not talk to anyone, and then leave without socialising, except to be polite with the others.

Can you understand how THAT felt ? But I agreed as I so wanted to stay in the choir and she kept me in, but I knew she did not want me in 'her' choir at all .
From that day on I knew my days were numbered in that choir. As I just felt so unwanted and that I was being 'watched' by Claire - and I have NEVER reacted well to this - who does?

How can a person use their power in a situation so badly to kick someone when they are on the ground?


I am afraid after that, for a while, I tried but still felt unwanted and sadly the devil in me then took over ..........
How dare anyone treat me like this??
So I mentioned HIV at any occasion I could!!!! After all it was obvious no one wanted to know me, and that I was being directly stigmatised by some , so what did I have to lose?

Actually it turned out I did have a lot to lose in terms of belonging to that choir.
As what I had to lose was not being welcome in the choir, that I so needed to be a part of.

I had already been asked to leave due to incident when I said the F word to Barry at the gig,  which happened  long before I started getting sassy about the way I was snubbed by her and most in that choir, but I fought this.

However later when I had to have time off from it due to my husband getting Prostrate cancer and he undergoing treatment for it in Derriford Hospital, which is in Devon over a two hour drive door to door for us so my time was limited as Barry was trying also to run a business and I was helping him and I was battling my own fears, and for the second time in less than 3 years as I already nearly lost him to AIDS,  that I would lose him ...............................

When I tired to go back to the Suitcase Singers Claire Ingleheart said in no uncertain terms I was  VERY unwelcome.

I may not have been welcome as a person there, maybe I just did not 'fit in' but I know that it was in part my HIV,  also because I was needy. Anyone newly diagnosed with HIV will NOT be themselves and we deserve compassion. I never got any from anyone in  that group.

But I thought, and still do that Claire Ingleheart is a very talented musical director and I loved singing in that choir and I was devastated.

I truly felt kicked when I was down.
I was also devastated that Claire seemed to think I was so 'unacceptable' that when she came back she talked to me like I was some kind of stalker and someone who was dangerous to know .
I agree I was an ass. I was traumatised, upset, very needy when I joined that choir.
But conversely no one, certainly not Claire Ingleheart gave me any benefit of the doubt, tried to find out who I really was, gave me the time personally of herself or the time  I needed to adjust 

NOT HER RESPONSIBILITY YOU MAY SAY. BUT I  BELIEVE DEEPLY WE ARE ALL EVERY ONES RESPONSIBILITY!

______________________________________________

Her reply when I tried to go back after the break - and this is a transcript - Judge for yourself: 

   Dear Claire

I wod like to come back to the choir, but  am worried you will not want me to come back to your choir, now I have had a break and I want to come back -
Suitcase Singers - in the Zed Shed Penryn ?

So I will have to accept it if you say not and I will accept this as I accept totally I inadvertently caused you problems because I was so very silly said the F word to my husband while on a performance and stupidly tried to tell others in the group the total hell of what I am going through re HIV.


I am so sorry that I did this , I have leaned my lesson, I will never again But at this time I was trying to treat having HIV as you would having breast cancer or gyny cancer - as I am not ashamed - but sadly

HIV, is not yet accepted or OK to have
I am so sorry - I will if you accept me back? If you do I will never mention I have HIV , not ever again


So I am sorry but, I am not , or ever will be a conformist, or live to what others expect and also I stupidly tried to tell those - and you too what was goign on with me ...basically the horror of finding at over 50 years old I am living with HIV even though I have NEVER once had sex with anyone but my husband since before 1994

It was a HUGE and such a BIG shock !! as you can imagine???

But I so promise - I may not be able to sing ?? well not more than bass - but I so love you .......really Claire you are lovely...and your choir is too
Please have me back \???
~
I do so love your talent/work and at the very least I do so know and I do so appreciate how talented you are

_____________________

No reply so wrote again ...............

Claire - I so miss being in the Suitcase Singers and so want to come back, can I?

I stopped coming because things got so very hard for us , we let out holiday lets ( Yurts: http://www.holidaylettings.co.uk/rentals/helston/79206 and our facebook page http://www.facebook.com/pages/Toad-Hall-Yurts-and-Studio/176977105690899 )


We do this to make a living in the summer but because my husband was diagnosed with prostrate cancer and I had to nurse him through his radiotherapy and I also I was diagnosed with avascular necrosis both in winter this year I had to just concentrate on what I had to do to make a living and I also felt that I was unwelcome in the choir as I was stupidly expecting personal support for my situation that I would not get and was inappropriate for me to ask for.

But I have moved on and no way do I expect this anymore, all I want to do is come once a week and sing!!!

I am sure you have no interest in this and I am only mentioning it to say why I stopped coming - and to ask if I can come back??

Her reply ............

Dear Verity,

I am very sorry to hear that your husband has not been well and life has been hard for you. However, I am sorry to tell you that you can not come back to the choir. Please do not attempt to contact me again. I wish you good health and peace and thankyou for accepting my decision on this matter.

Claire

( she can not even get my name right?? I mean that little? Yet does she relaise what the Suitcase Singers mean to those that go.

I know she is a busy women but perhaps she should??

And that reply was like I had stalked her. I had not contacted her for over 6 months at that point except to drop her an email to say I could not go to the choir for a while)

_____________________________

 Sorry but it hurt Claire, a whole lot to be considered persona non grata by you or anyone when all I did I was make a mistake and joined your choir when I was VERY needy and trying to adjust to recent finding out I now live with HIV which is a HUGE and terrible thing to discover.

And all I wanted from you and those in the choir at that time , or any group I joined then, was a bit of support, understanding compassion and friendship


I knew you would not have me back and never liked me or wanted me in the choir but it hurts a whole lot to have it confirmed>~
Talk about being kicked when you are already down and being offered no helping hand to climb out or a ladder.

That is how it has been for me everything I have tried to do to get myself up again since I was diagnosed HIV+ so I did not expect anything else, I expected you to turn me down, so it should not have hurt as it has as it was what I expected.


~Many times over the last few months since things have improved with my husbands health and I have been getting myself back together I have considered just turning up on a Thursday morning and my friends who know how much I miss the choir and wanted to come back urged me to do just this. Two offered to come with me to support me if I did. Also my husband who can not sing a note has offered .

But I felt it unfair, knowing what you probably feel about me (which my friends and family do not understand at all as they just do not see me in the way you probably do )

So I felt it unfair to do this to you and not give you the chance in private to tell me if you did not want me back and would be unfair to turn up if you felt you had to ask me to go, not just on you but on the rest of the choir

So this is why, after much deliberation, I found you on Facebook so I could contact you privately and message you and ask you in private.

I have no barriers of making a fuss in public, as I am sure you well know, but I know you do and also it would be unfair on others in the choir who I realise also many of them too have needs and are struggling - so I decided to do it this way out of respect for you and all those in the choir

However, as much as I was expecting it, it still hurts to be basically told I am not welcome and to go away and never even contact you again.

But despite this I liked and really admired you, and I still very much do.

As despite my being in a very bad place when I joined I really loved singing in your choir both because you are fascinating to watch at work and you have a very real and very valuable talent to get the most out of people vocally, even those vocally challenged like me.

And you also have a magnetic personality which draws people to you and people including me although I failed so miserably - want to be noticed and liked by you,

But I am not sure you are a very nice person at all or at least not a very tolerant or compassionate one , well probably that is an huge assumption and a wrong one, just based on how you have responded and interacted towards me, as I am sure you are to your family and friends and those you like and suit your class and outlook on life very compassionate and caring, but you certainly have not been at all towards me.

I guess you see me as just too difficult a person to bother with or have anything to do with even once a week in your singers, and someone you do not want to be associated with as I am, needy, coarse, have HIV and an open about this as I am a HIV activist and I want people to know the realities and that anyone can get HIV, and I am working class and do swear now and then etc and a bit - or a lot - of a liability and all you care about is your professional reputation when it comes to the choir and have no thought of how important it is for some of us .

It was very importaint for me, even though I was in such a bad place I could not conform or keep my mouth shut and my needs to myself at the time, it was still very important and I only stopped coming because my husband got very ill and I emotionally collapsed - something I was heading for fo a long time and had to happen at some point.

Sometimes you have to reach rock bottom to climb back out

Actually the impression/assumptions you have about me are quite wrong about me also. I am working class and do swear, the f word is nothing to me as it is part of my culture, but I am also very educated as I climbed out of the gutter and got a teaching degree and I am very determined in what I do and I can be an aset and you may have been able to help me to sing but you never brought out who I am or saw or used my assets and skills ( I did offer i.e photography, digital imaging, advertising , teaching, networking etc - so we obviously dont either of us see who each other are and on your side you have no interest in finding out

However whatever else you are a very charismatic and talented person and for that reason it was a very great pleasure to meet you.

I really will go now - having had my say

I'd block me if I were you. Then you can guarantee I will never talk to you again  all the best, Veritee - not Verity

Actually I did write again - I am afraid I got assy - my downfall is that I do not take being regected and so horribly and with so little empathy or any understanding and form someone whose Choir I had gone to for nearly 2 years at that point. And paid money I ddi not have to go.

I think I said to her ..................

o   How dare you!!
Who really do you think you are to talk to me or anyone like this???

'Please do not attempt to contact me again. I wish you good health and peace and thankyou for accepting my decision on this matter.

Up your own sweet ass comes to mind

Veritee

Well it is Valentine's day again???

Valentines day should be a good day, especially when you have been married as long as I have and love your husband as I do. But for me it is now such as sad day.

As just before midnight on the 13th Feb 08 - 4 years ago, my husband took his first HIV meds and it hit me like a hammer that HIV would be a part of our lives from now on and forever
and I sat with him

So valentines day is always be a very hard one for me as 4 years ago today Barry took his first HIV meds and it really hit me that HIV would now be in our lives and a huge part of our lives - and forever


Poor Barry....
As this morning 14/02/2012 at around 6am he did the devoted husband thing?? brought me a card saying 'to my beautiful wife' and one lovely red rose ............
But sadly he was greeted with floods of tears, tears that I have been in ever since today!! Oh well that is how life is with HIV 

And also that is life and marriage, the rough and the smooth, and in sickness and in health certainly meant more than I, or he,  ever thought it would !!

Ironically that night 4 years ago we ended up making love. As the clock struck midnight on Valentine's day no less.

http://hiv-and-us.blogspot.com/2008/02/thank-you-barry-for-valentines-day.html
Not surprising as we had both been too ill and for so many months to do anything but jsut try to survive.
See my Diary of that time: http://hiv-and-us.blogspot.com/2008/01/dairy.html

Barry was especially ill, far more than I, but with hospital ttreatment he was now, by Valentin's night, 2008 a bit better. 
In fact maybe for over a year we both felt to ill even consider sex. But on Valentines day in 2008 was not long home from hospital and we were both feeling slightly better and good sex has always been a part of our life together

Is it not ironic that it is mainly through sex you get HIV, Yet for us sex became out of the question for a while once we started to become ill in about early 2007?
But that night 4 years ago we did, for the first time in months, make love it was lovely I will always remember it .

But also I will always also remember that night as the night I realised HIV was a part of our life from that day on.

Criminalizing those who live with HIV

There is sadly a very worrying trend worldwide to criminalise those with HIV.

This is NOT about those VERY few who deliberately set out to infect others. They do exist, and there are bad in every community and not all that have any illness are nice people.

But this is so very very RARE!

This post is about criminalizing ordinary men and women who live with HIV. People that do not want to infect anyone and often do their best not to.

Many who have fallen foul of this trend have been completely open about being HIV positive.

But for various reasons sometimes  not all may disclose, either in general life or even when they have sex - but they do protect their partners



Before you judge............

Realise THIS is NOT a simple issue or as black and white as you may feel if you have not looked at the issues.

And if you have any interest, please look at these links  - and learn.
I will add links to this post as I find them.

__________________________________

LINKS - Criminalizing those who live with HIV

This first link is a very powerful video about criminalising HIV and those with it and how unjust it is and perpetuates stigma. And how it particularly affects women.

It is about the US, BUT this DOES happen here in the UK and all of Europe. Perhaps not so often but believe me it does happen
http://t.co/1EP5vAmg

Ten Reasons to Oppose the Criminalization of HIV Exposure or Transmission
http://www.soros.org/initiatives/health/focus/law/articles_publications/publications/10reasons_20080918

A very interesting collection about the discussion about criminalisation
http://criminalhivtransmission.blogspot.com/.

Countries questioning laws that criminalize HIV transmission and exposure
http://www.unaids.org/en/resources/presscentre/featurestories/2011/april/20110426criminalization/

Alice Welbourn - http://www.sophiaforum.net/index.php/Biographies/Dr_Alice_Welbourn

Is a briliant social scientist from the UK who also lives with HIV herself and thesedays  specialises in the criminalisation of those with HIV especially from womens perspective.

She in fact is British, and lives relatively not far from me in the South West of the UK  and I have met her a few times and seen her speak on the subject.

I met her through PozFem for which I am very greatful http://www.poz-fem-uk.org/ And will be greatful I met all the wonderful women I met through PozFem UK

( Sadly - due to the reccession I guess? -  PozFem no longer has the money it needs for us to meet up. This is a great shame)

On a very personal level as we live quite close and are of simular ages and perhaps backgrounds and perhaps lifestyle I did so very much wish/hope we could become friends and had been able to meet sometimes outside of PozFem?

But she is a very busy activist and renowned social scientist and I am very small fry, a very newly diagnosed women, a budding HIV activist but one that will mostly have to confine my activities to my local area of the UK and online as unlike Alice I am disabled and feel unable to cope with much travel. And one who is only now really learning the issues and the huge complexity of them.

But I will always admire Alice Welbourn, and |I will always follow what she has to say and be very greatful we met.
She probably is one of the foremost experts on this subject in the UK

Try these links below but also Google 'Alice Welbourn' and read her papers and presentations.

http://www.sophiaforum.net/resources/HealthCriminalisation_RZedawuncleaned.pdf
http://www.athenanetwork.org/assets/files/ALQ-Mujeres_Adelante_--_March_2010.pdf
http://www.opendemocracy.net/authors/alice_welbourn

New laws to fight discrimination will do little to protect women diagnosed with HIV - Alice Welbourn
The Guardian, Monday 16 January 2006 - old but still valid
http://www.guardian.co.uk/world/2006/jan/16/gender.aids

Women with AIDS:Commonwealthcasualties
http://www.icw.org/files/HRHS_Welbourn_3_0.pdf

HIV & AIDS  - a book Alice Welbourn edited
http://books.google.co.uk/books?id=dIvD6eyT27UC&pg=PA22&lpg=PA22&dq=alice+welbourn+biography&source=bl&ots=YWQagtPS3K&sig=YlkJXvVmyJqDCvjz5TzZQW8fJ1k&hl=en&sa=X&ei=R_0sT_LJGIah8gOOupHtDg&ved=0CEkQ6AEwBQ#v=onepage&q&f=false

Behind Bars: Life Stories of People Affected by the Criminalization of HIV
http://ippfaids2010.blogspot.com/2010/12/behind-bars-life-stories-of-people.html

More life stories of people affected by the criminalization of HIV
http://www.ippf.org/en/What-we-do/AIDS+and+HIV/Behind+bars.htm

Submitted by - Michèle Claudine Meyer thank you Michele
10 reasons to oppose the criminalization of HIV exposure or transmissionhttp://www.soros.org/initiatives/health/focus/law/articles_publications/publications/10reasons_20080918/10reasons_20081201.pdf

One about the other side of the argument - but also supports the argument not to generally crininalize those with HIV - a blog post by someone I know online who also lives with HIV
http://hivspice.posterous.com/the-criminalization-of-hiv-david-dean-smith-s

Whenever I have time I will add more links to this post.

Criminalization of those that live with HIV is one of the most important - and potentially damaging - issues all of us that live with HIV worldwide face today.

Just my humble opinion!

How I met Barry

This is what I wrote on facebook about how I met Barry and why I am with him.
And still with him even though he gave me HIV

There is a lot more too it than this in fact . I would have to write a book to include all that happened for me and for him, but this is it in short - very short!!

I do not fool myself that anyone, other than me, will care or anyone wll read this except for me but I want to record it as part of our journey together.
As this was why I started this blog, as our own personal journey from diagnosis with HIV

Also/in addition!!
I so hope my lovely daughter will one day see this and know for certain that whatever a 'pigs ear' I made of bringing her up and however bad it was for her............unlike my own experience, she was born totally out of love , and we love her, she is part of out love  and always will be.


Love you so much Caja!!!!!!
____________________________________________________

I met my now husband in 1980 through a friend -  Mary Beaman.... love you Mary sorry we have drawn apart ............  while living in south London. She lived in the flat under mine in fact.

Barry became one of my best friends.

At the time I was a feminist and at times promiscuous but mostly with women, and while I had sex with some men, my only serious relationships were with women as men had abused me, let me down and so many other things I truly felt I would never have a serious relationship with a man again, although I still fancied them sexually.
But I did have a sexual  on and off relationship with a folk musician at the time called Pete and before that someone called Richard  ( who I had been seeing on and off since I was 16 years old!!!) 

Neither abused me but also neither respected me in my view or saw me as any real prospect for any real relationship or saw me really as anything but an easy available - to them, an easy lay!!

Little did they seem to realise that  in terms of men, they were the only ones I was available to and the only men I had anything to do with sexually and for many years)

And really I would then not consider to enter Barry, my lovely friend Barry into my world as it was then.
As he was such an innocent, compared to me he so was!! He would say he was not, but honestly he was! He knew how to drink and smoke a bit of dope but in terms of sexual relationships he had only ever had 4 and all of those were long term. I loved my innocent friend Barry.


We all, or mostly , think of men as those who  have the upper hand, and it is men who abuse women?
Yes I think by and large this is so
 But by then I had had enough of being abused, taken for a ride, treated like a piece of dog dirt


~So by then I took what I wanted , and when I wanted.
If anyone was abused then it was Barry by me !!
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Barry and I were therefore friends for over 4 years and I never considered having sex with him as basically our friendship was too precious and so rare that  I felt that to do so would change the equality of it and ruin our friendship.

He didn't try and in fact was unlike me, he was  someone who did not ever have random sex, not with anyone.

He had only ever had sex with 4 people in his life - he was over 30 by then- and i knew he would not have sex with me unless we were in a long term relationship and I did not want to alter our friendship as I did not think I ever wanted a long term relationship
And he seemed to want me as a friend only.


Then in 1984 he decided he was bored with living in London and the shallowness of his life in London when he was home from sea, basically drinking partying, smoking a lot of dope,  and having fun, or rather trying to have fun. But in fact it was not fun, he felt empty and wanted a different life.............................

 So he decided to move deep in the country as far away from London as possible and bought a small cottage in Cornwall.

While he was preparing to move I realised I could not live without my now best friend and I loved him.

But I was too scared to act on this and did not want to change or influence his plans as I did not think it fair to do so. And did not know if i could have a proper relationship with a man, and knew this was all he would ever want.

So I remained his friend, supported him to move to Cornwall, 250 miles away..

I also had a VERY senior and well paid job as a senior youth worker, I was in my 30s at the top of my career, owned a lovely flat in Wimbledon London had lots of friends and a good life and knew that in backward rural Cornwall I would never get a job at this level again.

But I missed him so much, he missed me, I visited him in Cornwall every holiday and he visited me for 2 weeks when home from sea.

 One day when staying with him in Cornwall we had sex and I realised I really loved this man. I knw it before, it was not the sex, but this somehow made it clear!!

It turned out he did not want to pressurise me so until 1986 we conducted a long distance relationship.

Seeing each other only every 10 weeks or so when he was not at sea this was a time when there was no Internet, phone calls were so very expensive etc and he was at sea with no way of contacting him for months at a time.
It was a totally different world than the one we all live in now!!


I continued to have on off relationships with others, but I was very unhappy and missed him.

In the end I suddenly had enough. In the space of a week I suddenly decided to throw my life as it was then to the winds
I decided to sell my flat, leave my job and just risk everything and move down to his cottage in Cornwall just to be with him.

Which I did.

In the space of  3 months I sold my flat left my job  - I had been there 7 years and had a job at West 14 Girls House, Based at :  73 Talgarth Road, London, W14 http://maps.google.co.uk/maps?rlz=1T4ADFA_enGB453GB455&q=73+Talgarth+Road,+London,+W14&um=1&ie=UTF-8&hq=&hnear=0x48760f9591289595:0x40ffcb921cf5ed10,73+Talgarth+Rd,+London+W14+9DJ&gl=uk&ei=3yElT9TSMqHU0QW_s-TOCg&sa=X&oi=geocode_result&ct=title&resnum=1&ved=0CCIQ8gEwAA

Such a shame as I can see on Google that it is no longer any kind of youth house or charity, as it is now a privately owned house.

 Yet I gave it my best shot and my most productive working years and I so hoped that it would continue after I left. But I know it folded very shortly after I left.

Maybe now they know how much work I put into it??
I agree I may not have  been a great employee!!!!

But I did my very best and they did not sack me and I truly

loved the girls and young women I worked with........so if my management did not sack me that was their problem and I thought in fact I was very good value for their money??

But they would have found it hard to get rid of me????
 However in 1986 I gave up this secure job and a job I loved......because I wanted to be with Barry

  - So I sold my flat and I then bought an old Luton van, packed absolutely everything I owned into it and my 2 cats and drove  250 miles to Cornwall

I was risking everything as he would not commit - It turned out because he knew I would not be able to work at the level I had in Cornwall and he was a friend as well as a lover and did not want to destroy or be responsible for altering my life.

 But I did not know this so drove with everything I owned to his cottage in Cornwall not knowing if he would not want me there

 Luckily, for me,  he did, with all his heart.

He is just not a risk taker and would also not do anything to risk my life either.

The rest is history. I was right I never did get a job at the level I was at in London in Cornwall. I did work for 14 years as a youth worker here but it was a very sexist work environment and women did not stand a chance at a senior job. Things changed in the end,  but far too late for me, as by then I was burnt out and ill.

But we sold Barry's cottage bought a rambling derelict smallholding together with  the money from the sale of my flat money and his money from the sale of his small cottage in Ashton.

We have been renovating it now since 1986 - a lifetimes work .....for what I now  sometimes wonder ???? It is our home and a lovley view but wonder sometimes if it has been worth the effort of over 20 years of renovation, just to live in a smallholding?We had a daughter in 1989 - after many attempts and miscarriages ........maybe I should not have tried but we so wanted our daughter , a child of our own that was begot from us both - it was hell the fact I miscarried several times and Caja's birth.....well several times and I so nearly died .........we are both so very lucky to be here now
.
......but I am so very grateful I had her.S he is amazing.  I just hope one day she reads this and will feel the same too??


We also had foster child before Caja one after wards and it is now 2011 and we are still together and always will be

This is why when people question that because he was unfaithful just once during a stupid drunk moment when working away at sea for 6 months, lonely and probably because he was 50 and had never sown any wild oat sexually so had his only moment of madness in his life, and and people question it was more than once and he was a serial adulterer, I know this is not possible!!

I know him so well and know that sadly that brief encounter with that woman in Brazil was the only risk he has ever taken in his life and how much he regretted it even before it was finished .

And I am so sad for him that unlike many he could not even get away with just one fling!!

 As he got HIV from just one time and gave it to me and lives with guilt every day despite the fact I have long forgiven him and I do not want my lovely husband to feel guilt.

 And we are in this together to death do us part , just as we always were and HIV alters nothing in terms of our relationship.

Me?? My Heath etc

Me??My health problems are minor compared to Barry's, as I do not have cancer like he does.  So I truck on, we both do.

But I do have disabilities and conditions as well as HIV that affect my life. And all but the ankle fusion has happened since I got HIV

I have an ankle fusion so I have to walk with a stick and it affects my ability to do many things, high blood pressure and high cholesterol ( both common in people with HIV and on certain drugs and the drugs increase the liopids in your blood. Barry is on the same HIV meds and he has high cholesterol too and we are both on statins that gives us side effects)

I have psoriasis which is so very irritating and I did not have this before HIV.

But the most limiting thing is I have had  severe problems with my hands for the last couple of years.
This makes even typing this blog so very difficult - which is another reason I do not update it often.

I already knew I have carpel tunnel and cubital tunnel syndrome in my hands but also something more than this was going that affects my left hand and wrist mostly but also my right slightly,  but I could not get a diagnosis for a very long time.

But I have now found out what it is thankfully ? As I have been diagnosed with Kienbocks Disease at stage 3 in the last 15 months. Kienbocks is a very rare condition that is a form of avascula necrosis in your writs/s. Whereby a small bone, the lunate dies in your wrist or wrist due to restricted blood flow and the bone collapses which is painful and affects the use of your wrist and hand.
http://www.patient.co.uk/doctor/Kienbock's-Disease.htm

Above is an Xray of my wrist where you can plainly see the lumate bone is dead as it is very white.
This Xray was before it started to break down, it is worse now as it is breaking up.
You might think that one tiny bone can not be much of a problem??

But believe me you need EVERY!! bone in your wrists to work perfectly so as to have articulation and therefore proper use of your wrist and hands. Also you are constantly moving your wrist and hands and a dead bone is like having a permanently broken bone in your wrist and as it is forever you can not wear a cast forever and it would not heal anyway, so you are constantly moving a broken wrists and the pain is considerable.

It is not really known what causes it but a fall or blow to your wrist can set it off and also avascula necrosis of all kinds is a condition that people like me who had undiagnosed HIV for long enough for their immune system to be seriously damaged do get. But usually in the hips not in the wrist. So my Kibebocks could be due to this? Another reason everyone to be regularly tested for HIV and to know your status - its too late for me.

I had an operation to relieve the Kienbock pain and symptoms in November 2011, it did help a bit. I had denervation - a process whereby they cut some of the nerves to the bone so you do not feel the pain, but it did not do a lot and it is incurable - like HIV sadly - http://en.wikipedia.org/wiki/Kienbock's_disease

Untreated it will get worse and my wrist become misshapen and unusable and when this happens they said they will fuse it but for now want to keep the flexibility in my wrist as long as possible.

At the same time as this operation I also had decompression of the cubital nerve on my left wrists which has partially helped.

I do really need the carpel tunnel syndrome operation and the cubital nerve decompresed on my right. However it was suggested , and I agreed as I really do not want to have more operations and general anaesthetics than need be, to wait until I need my left wrist fused and have the carpel tunnel on my left done at the same time and then the right cubital and carpel at a later date once I have recovered from the wrist fusion.

I have been told that that in my case Kienbocks could be due to having undiagnosed HIV ? But who really knows? Not my doctors it seems?
All I know is I have HIV and now I have Kienbocks and life is now changed forever for me!!
Well that is all the sob story you will get here

Sorry if this is gloomy, but I wanted to put my blog up to date, but we both truck on
And I having done so I will resume by blog updates on a more positive theme from now on.

Doctors & Consultants do not always know best - so always question!!

We have been quiet for the last few months as we have had a lot to cope with........... And it is ours to cope with who cares really except us?

But I wrote this on facebook, so I may as well share here?

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My husband has a history of early Prostrate cancer in his family, his older brothers have prostrate problems, one has prostrate cancer and their father and other males in their family died of it.

Yet he got a negative reaction here in the UK when he asked to be checked for prostrate cancer just over 2 years ago . He is now just 60, he was then 57. He was told he was worrying about nothing and he was too young to have prostrate cancer?!

His internal examination by his GP was very so brief and showed nothing and Barrys prostrate did not seem to be enlarged to this doctor, but the PSA test was high and this was a GP, not someone who specialises in cancer.
However despite high PSA he was told at his age he would/COULD!! not have it!!

But we knew better and fought and insisted it was investigated further.
He eventually had a biopsy - which is the only way of really knowing!!


It turned out he had stage T2a prostrate cancer - probably not outside the prostrate but would swiftly be if left and of an aggressive nature.

http://www.prostate-cancer.org.uk/information/treatment/treatment-choices/brachytherapy

He has now just completed 'Permanent Seed Brachytherapy' - a very up to date and effective radiotherapy that we had to fight to get and Barry had to travel outside Cornwall to get as they do not do it here in Cornwall, UK.

We are waiting to see if he is clear? To know for certain may take some years

________________________________________________

But we have had such a fight with our doctors to get this for Barry !!

They wanted to give him a radical prostatectomy!!! Which would 87% leave him with urine incontinence and wearing a catheter for life and almost certainly impotent!!

Many treatments for Prostrate cancer leave men with some impotence but with prostatectomy it is almost certain.
And it is not neccessary except in cases of very advanced cancer and Barry was not at that stage and a prostatectomy is rarely done on someone of Barrys age anyway!!!

So why did they offer him only a prostatectomy and why did we have to fight to get a less radical treatment?
Because he had HIV that is why and those treating him were not up to date with recent research on radiotherapy and those with HIV and referred to a way out of date research , done in the 80s and in America that said men with HIV can not have Radiotherapy of any kind because they do not heal. 

But this research was done in the 80s, before the modern HIV meds and about bowel not prostrate cancer. Up to date research has shown there is no risk now!

The worse thing about this for me was is as soon as they said Barry could not have any form of Radiotherapy due to HIV, I knew 100% they were wrong!!

But I am NOT medically trained and I was so scared I could not prove it. And I had to as Barry said he would rather die than have a prostatectomy and I knew he meant it!!
So I was faced with the daunting task of proving to a team of oncologists and urologists that they were wrong!
And I will not go into the details, but I did prove it, but it was not easy. 

 I even had to find the up to date, peer reviewed research, and even give them a volume number and page number of the medical journal it was published in and supporting information!!
Why as the wife of a patient did I have to do this?? It is not right - thank you NHS!
I support the NHS with all my heart, but in this case they really let us down! Could not these highly trained doctors be able to get over their ignorance about HIV as it is now and read up on latest research??

But I did prove it - Barry did not have to have a prostatectomy -

But even so it has been so hard a journey over the last year or so.

I just can not tell you how hard and I can not go into the full extent of our battles over the last year or so, just to get Barry treated at an early enough stage.......but believe me the doctors certainly thought they knew better than us......and it turned out they did not at all!!! - His consultant even apologised!!!


I of course do not have prostrate cancer but I am sure affected by it !!As I have been Barry's nurse, companion and only support through it all.

Barry was able to have Brachytherapy which is less intrusive than regular radiotherapy and may indeed be cured - we do not know yet we are waiting to find out.
It has affected him in so may ways that I can not go into , but just let me say , the last year has been very difficult to say the least.

And he  is in fact now parcially impotent - as so many men after treatment for Prostrate cancer are.

Brachytherapy is supposed to affect sexual function the least but all do and Barry was not one of the lucky ones.

This may resolve in time however and I hope it does. As we have tried everything now,  Cialis, Viagra and Levitra, etc. And  he can not bring himself to inject his penis and I agree if this is not for him, it is not for us!!!!!!  and as someone with prostate cancer he gets all this free in the UK,

But nothing works. This may seem a small problem, and of course it is not compared to living and surviving prostrate or any cancer but sex is part of a quality of life for us all?
ISNT IT!!?

And believe me it is a very big thing for a man , especially a man like Barry who is so full of life and wants to live it and is only 60!! Men can beget children and be potent until their 90s , so to be impotent from 58 is a very big thing!!!

So this will may improve but has not so far and and I will live with this happily but he has more problem with this than I?

Not good for either of us - but it is better to be alive

SHAME ON ME!!!

I have not written on here for so very  long ................

SHAME ON ME!!!I started this blog thinking - stupidly? - that to write it may help others avoid what we have, by avoiding HIV, and that I could aise awareness.~but I have been so very disheartened as I am no longer sure that those who do not realise hat they have a risk want to know they have any risk?

That so many just want to believe that HIV could NEVER affect them and could never be part of their lives?

So for the last many months, I just kept thinking what is the point, who is interested anyway? I do not want to dwell on what we face and who cares anyway? - we care but it is our stuff and ours to face

But now I am back. This is our record for us, and our friends and perhaps for our daughter who we so love despite the fact right I know she does not think she wants to know right now ansd mybe she never will?? But this is us , her parents, the ony ones she wil ever have.

And I did not have a good story either but while sh may not want to know now,  I know many years later I would so have wanted to know about how my parents saw it -warts and all -  .

So here goes.......................................................................  

That I have been quiet does not mean our life has been quiet

Since I last posted much at all we have had the following happen .
Thinking we were OK, that yes we both had HIV but since Barry got well and I felt better since we went on the ART with the HIV meds we had a 'weather window ' a reprieve so  we could expect to be well for a few years yet?

So we continued to live our life to the full as always.
So we  started to demolish half of our house to re build it  as it was falling down and we have meant to do it for over 25 years
This was a very big mistake .

As shortly after we started Bary got diagnosed with Prostrate cancer and had to start treatment for this .
Prostrate cancer is not linked to HIV so he may well have got it anyway. Bu tit is very young to get prostrate cancer and people that live with HIV are  50 to 70% more likely to get cancer of all kinds, not just AIDS defining cancers.

So who knows if he would have had prostrate cancer if he had not had HIV?

Then I found I could not use my hands hardly at all and got diagnosed with Kienbocks  http://en.wikipedia.org/wiki/Kienbock's_disease

Which is a form of avascula necrosis , which some research thinks is linked to HIV and the ARV meds. http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102241441.html

But the jury is out and more research needs to be done .
But basically for me I think it has to be linked.

But who knows?
All I know is Bary is now fighting cancer, I have Kienbocks - which is not good news considering I already have had an ankle fusion and have bad knees and difficulty walking so this was the last thing I wanted to happen .

But life goes on
What choice do you have?

HIV is for life - HIV is a huge learning curve.

New beginnings - HIV is a huge learning curve

I have not updated my blog for a very long while.
I apologise but in in the meantime I have been learning , learning about what living with HIV is really all about and how fruitless anger is. It does not matter who you got HIV from, we all got it from someone, and the chances are that, unless they are one of the very few, they did not want to get HIV either??

So in the last few months or so I have been quiet and learning.
Learning what it really means and from those who have been there long before me HIV had its 30th anniversary this  week.
And you know sadly it is only now sinking in for me that HIV  is my life now, and forever

What we face as women Living with HIV in the UK

Rather than reinvent the wheel I thought I would post here a speech given at The Sophia Forum Round Table meeting, at the House of Lords by Silvia Petretti on the 18th January 2011.


Silvia is a woman living with HIV who I count as a friend who I met through the National womans group PozFem UK.
She also works at Positively UK as Community Development Manager.

This speech gives a good idea of the issues facing women who currently live with HIV in the UK

http://hivpolicyspeakup.wordpress.com/2011/01/19/visibility-voices-and-vision-a-strategy-for-women-and-hiv-in-the-uk/
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I would like to thank the Sophia Forum for inviting me to speak today, and for all of you for being here.
I am a woman living with HIV and I work at Positively UK as Community Development Manager.

At Positively UK we speak to hundreds of HIV positive women every year. We meet them in support groups, through the help-line, we meet them in hospitals and during outreach to prisons. In spite of all of our efforts we only reach several hundreds of the over 21,000 women who have been diagnosed with HIV in the UK. And reaching those women is becoming harder and harder as funding for women’s specific services shrinks.

As you have heard from my colleagues as women living with HIV we face many challenges: Sophie has highlighted the challenges of those of us who go through the Criminal Justice System and Angelina the different layers and complexities that HIV adds to motherhood.

From a strictly bio-medical point of view many of us are doing really well. And I have heard so many times that HIV should be ‘normalized’ and treated like diabetes. But for most of us who are living with HIV in the UK I know that it takes more then pills to live with dignity and safety.

An area in which positive women find enormous difficulties is the area of relationships.

This is a sphere of particular importance for women. Of course every human being has a basic need of feeling loved and appreciated. However, this need is amplified for women. The way gender plays in society means that women still gain a lot of status through being in a stable relationship and having children. HIV on the other hand comes with an immediate loss of value as a person in society, and this on top of other socio-economic disadvantages women face.

The pressure of being in a relationship, combined with the anxiety of being rejected because of our HIV status pushes us very often into dangerous relationships.

2011 has started with some stark reminders of those dangers. During the Christmas holidays I was threatened with violence by an ex partner: the fact that I am a woman living with HIV, made me a potential ‘killer’ and of course of dubious morality. This was very much at the centre of the verbal attack and the threats of physical violence. In my ex-partner’s mind I obviously deserved to be treated like that because I have HIV.

I was shaken, and hurt, but thanks to the support of friends and family I was able to feel a certain degree of safety. For many women for whom HIV is still a dark secret to be protected at all costs, it would be impossible to talk to anybody about such an episode and this sense of safety would be unattainable.

When I returned to work I found out that another positive woman, a close friend, had been physically assaulted and beaten. Within the first few days in January I also received a phone call from a young positive mother who is in an abusive and violent relationship, which is profoundly damaging to her and her baby.

The truth is that hardly a week goes by at Positively UK that we do not hear of a positive woman being emotionally blackmailed, abused, threatened or physically attacked.

I have used my personal example because I want to dispel the myth that violence against women is something that affects only ‘certain’ women: the 'vulnerable', or the ‘African Community. I am afraid that among women with HIV in the UK this goes across class and colour: it’s part of our reality. I do also recognize that poverty, immigration issues, isolation and fear of HIV status being revealed: create insurmountable obstacles that lock positive women in these dangerous relationships.

I do not have a research paper to back this up. I have 10 years of experience working for a women’s helpline and facilitating support groups.

On a global level the UK through Department for International Development has widely acknowledged the strong link between gender inequity, gender violence and HIV. However this link has never been acknowledged in any national HIV policy strategy here within the UK.

At a very personal level I have asked myself: why has this happened to me? why is this happening to us as positive women? Are those men just individual ‘monsters? Who else, or what else, has a role to play in this? And I believe it is important to recognize that these are not isolated episodes but they continue to happen in the context of our societal views and attitudes towards women and HIV.

Today I would like to ask you here in this room, many of you being influential policy makers: what is your role in shaping those attitudes? What is your role in stopping violence against HIV positive women in the UK?

Obviously when HIV positive women face such complex and difficult circumstances as those I and my colleagues have highlighted it is not a surprise that our health, physically and mentally, is affected. Research shows that women have worst outcomes in regards to HIV treatment. This is due to several factors, including low numbers of women in clinical studies, and lack of studies focusing on women’s issues outside pregnancy. It is no wonder then that there are still only about 30 of us women who are fully open about our status here in the UK: just 30 out of about 33,000 women who have HIV here.

However, I know from the work we do that peer-lead support enables women to regain a sense of self-worth, and this has a positive effect on our mental and physical health. Peer support is important in enabling us to disclose our status, or in giving us the confidence to leave abusive or violent relationships. Being more open about HIV improves our adherence. Adherence means less resistance to treatment and no need to switch to more expensive regimes. Being successfully on ART, with an undetectable viral load, combined with openness about HIV status, also creates the foundation for preventing onward transmission. And we all know that new infections are very expensive to treat, as well as a personal tragedy. Finally, when women are appropriately supported in their psycho-social needs they require less face to face contact with their health-care providers. In brief: peer-led support for HIV positive women not only has health outcomes, but makes economic sense.

To conclude I would like to point out some recommendations which will allow us to continue to do our work, I also hope that this session will enable us to hear your ideas on other ways forward:

Firstly, we need some robust evidence to back our work. We need resources to develop participatory research around how gender, HIV related stigma and gender violence affect our lives as well as research on the effects of peer-led interventions.

Secondly, we need better partnership between the scientific community and HIV positive women. Scientific research, including clinical trials, should involve and support HIV positive women at every stage, from formulating questions, to collecting and analyzing data.

Thirdly, and most importantly, that support for women’s centred services and networks has to be long term and sustained, so that we, who are directly affected, can develop and maintain the strength to challenge negative societal views of HIV positive women. Stigma will end when we are visible.