Friday, 17 February 2012

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 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 



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: and our facebook page )

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.

( 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


Unknown said...

I just want to let you know that this is a beautiful blog and I can relate to it all. It is so sad that people still stereotype us just because of a disease that happen to fall on us from our wrong doings or some other way that some have gotten it. I am behind you 100% as, I have experienced all most the same thing but, it is hard living and having to adjust your life to accommodate a disease that happened to attach itself to us but it doesn't crush our spirit or what kind of person we are. God Bless for your blog. I shared it on Facebook hope you don't mind. Keep up the fight and stay strong lets stand together and make a difference in this world.

Veritee said...

Thank you so much. Yes of course you can share it on Facebook.

I do especially in the Poz women's groups and on my profile if I think it is relevant to others.

I live in a very rural place and can not do much to be an HIV activist and inform people of the realities of living with HIV and what the terrible stigma does to us all.
But I can tell the truth, write my blog and try to tell people how it feels.

I guess the MD of this Choir will not be very pleased if she sees it. But this is my blog and I needed to get it off my chest.

I cried and cried over this and the effect on me for a while was devistating.

Nothing I say is not true. Of course I can not be sure of others motives for snubbing me and making me feel I did not belong ands was not welcome, btu this is the truth in terms of how I percieved it and what it did to me.

And the transcript of what was said between us when I asked to come back after my hsuband prostrate cancer treatment has not been altered except to take out some typos and bad that spellings I made.

So I will stand up for being able to tell the truth and not being intimidated not to, whatever happens.
Anyway thank you very much, your words do help - a lot.

Veritee XXXXX

Tina Dickieson said...

You know it really saddens me to see so many people don't have a care in the world. Here in California where I live I go to our Aids Service Foundation and I see more and more older Hispanics being diagnosed with this awful disease that I wouldn't wish on my worst enemy. I have done my due also back in my day of denial but, now that I am living with it and fully accepting it, I can honestly say that I am not shy about it and very open about. I have met a few girls on Facebook that have came out and told me they were HIV+ and they are out there spreading the disease around and now one of the girls just happened to get arrested and getting ready to have a child this week sometime. She was somebody that I was trying to wake up to reality but, she claimed she needed the drugs and that nobody would help her with counseling so, she could get past the things that have happened to her with her own father. She just tell me is all they want is money and if you don't have the money to pay them they won't help you. Now, hopefully while she is doing her time for her crimes maybe she can wake up and want to see things in a different light I pray for her each and every day. It is about standing together and fighting this fight with friends, and family by your side. My family don't really talk to me much unless I call them this is one of the biggest things I have to get past along with my husband possibly having cancer he is also HIV+ and this last time he was in the hospital they found a spot on his lung and they doctor told him this last time that he went to see told him it could possibly be cancer he didn't tell him that the first time so, my husband is trying to grasp that at the moment and sometimes I wish I knew what I could do besides side by his side like the vows that I took when I married him 3 and a half years ago. I told him I am sticking by his side no matter what. He was wanting me to go on with my life without him because he didn't want to hold my life up. Anyways It is nice to share things with someone now that can basically relate. Thanks Tina

Veritee said...

Hi Tina Dickieson
Lovely to 'meet' you here

Thank you so much for your comments Tina and yes I can sure relate to you and the things you say as I also volunteer at a HIV charity here.

I do it because I consider myself lucky as I still have a husband who loves me and me him - many with HIV here are very alone - and we have a basic income and own our own lovely home and so many are homeless or in sub standard accomodation.

So I do my best and also try to spread awareness . I was on UK National TV for Worlds AIDS day 2011 and have ben in news papers, another TV program and on Radio.

My husband also is HIV+ and has prostrate cancer, so yes we do have a lot in common.

I belong to a couple of HIV womens support groups on Facebook. One I started myself, it has lots of members but is not so well usd as it is an open group and I guess not so many women are prepared to be open on Facebook, and another started by a friend which is a secret group so only members can see what you write, which is well used.

If you, and anyone you know, wanted to join us you would be very welcome.

To join you can find my timeline on Facebook and send me a private message asking to join

Or find the groups yourself - my open one is called HIV Women - Open and Proud, which is mainly used by women that are open and HIV activists!/groups/HIVwomen/

And th other one is called Poz Sisterhood ! Sororité POZ !!

And is secret and used by a lot of other women.
Both do have some members that are not Poz themselves, those who are afected by it in some way and those who want to support us.

It would be great if you could join us.

If not you are welcome to email me anytime