Notes from the weekend

You may have realized by now that I am quite keen to raise awareness for MRKH in whatever way possible whether blogging, video for Fighters lead by my friend Fran, walking 100km from London to Brighton or arguing with Dr Sarah Jarvis on Twitter for her misrepresentation of MRKH in a recent interview.  I have put myself out there purposefully because I am comfortable with my condition and because I want to share my experiences not only to raise awareness but to help support others.

However, I never imagined at any point in my life I would be standing at a lectern in church, not reading from the bible but talking to an audience about MRKH, Saturday saw that happen.

For those that don’t know, I play the flute.  I used to be reasonably good but I admit after I finished my A-Levels (one of which was music) and went to Uni I largely gave up.  Some 10 or so years later one Christmas, as my mother had decided she wanted to learn to play the piano (Grade 5 now – smashed it mum!), she got me and my brother to bring our instruments (he plays the saxophone) down so we could have a bit of a jam.  It wasn’t all that successful in reality however it was good fun playing again even if for a short time, very short, as in it was literally just that day.  I promised my mum I would get back into it and then life got in the way.

For those that also don’t know I used to sing in a church choir, as did my brother.  A few years after ‘Musical Christmas with the Bishops’ I was then invited to sing at a charity concert at the church I used to go to in memory of a family friend who had lost her battle with cancer with a whole heap of our old chorister friends.  To be honest my heart sank, my singing is not as good as the others and so I thought ‘I know, I’ll play the flute’.  I don’t know at the time what part of me thought that was a good idea but it gave me a focus and an excuse to pick up the flute again.  I enjoyed it so much I had a couple of lessons again but then my teacher had to stop due 20160924_114614to health issues and the flute was once again back in the cupboard.

Earlier this year we decided to do another charity concert at the church, I wanted to be involved but get so nervous performing so I was in two minds, plus I had no idea what to play I had played the one thing I could play well the last time.  Bugger.  I remember talking to one of my friends about it and he suggested I should see if there were any local groups I could join to help with the confidence and getting back into playing then I could see about getting another teacher.  So I did and it’s been bloody brilliant!

When it came to deciding this year’s charity Rachel, who was organizing the concert, contacted everyone and suggested aside from the local cancer charity we raised funds for (Hospice in the Weald) we could also raise money for MRKH Connect.  I was really touched by the suggestion and for the overwhelming support of the other performers to split the funds in this way.

To me this meant the pressure was on, I had to of course be there but I also wanted to be good as I could be as the event now had extra importance to me personally.  So I decided to play one of my A-Level recital pieces (Grade 8) but to make it more complicated, I do love a challenge after all, I chose a piece that was unaccompanied.  To my nonmusical friends that may not seem like a big deal but playing or singing unaccompanied means that you don’t have an easy way to hide things if they go wrong!

As the event drew near I was asked if I wouldn’t mind saying a few words about MRKH and MRKH Connect to the audience.  Of course I said yes but whilst I am very comfortable talking about it, it’s very easy to say what I want on the blog but it’s harder to find the right words when you are saying it out loud and there is no delete key!

I have had the chance to speak about MRKH in open forums twice in the last week, once for a video interview for National Fertility Awareness week (more on that in a later blog) and once for this concert.  So I should have been pretty well versed but like a blog a video is easy(ish) there were only two people in the room (the interviewer and the videographer) this was an audience of actual people ranging from small children to those much much older some of whom knew me and knew about MRKH and some that didn’t so finding the right way to say things was a challenge.

Saturday came and in an evening dress (/bridesmaid dress from 6 yea20160924_183444rs ago, thank you Jenny) which this time I made sure I would be able to breathe properly in (corset dresses and flute playing is too much of a challenge even for me!) I stood in front of the audience and played 3 movements from a Bach Partita.  The first of which, was of course the hardest, my hands were shaking so much I don’t quite know how I didn’t drop the flute but I got through it and then managed to persuade myself to calm down to play the other two with relatively minor finger fumblings.   It comes to something after so many years of playing and then not, and then playing again, that I physically had to write the fingerings for some notes out onto the music so I didn’t forget them.

The second half I was called up to say a few words about MRKH Connect, in my head it should have been a seamless description of the charity, what they do and what MRKH is and why it had a personal attachment to me.   In reality it probably came out a little fumbly but I was careful with my wording, conscious of little children in the audience, so I did avoid the use of words like ‘vagina’ and ‘womb’ on this occasion focusing more on the vital support both online and to provide sponsorship for women to attend support groups which the charity provides to women who can’t carry their own child.

I guess the point of this blog is that raising awareness doesn’t have to always be a media driven exercise, albeit the outreach of those is far greater.  It can also be on your own terms and something very personal to you, like this was.   It was really great to have the opportunity to stand up there and talk in that forum about it and I am very grateful to Rachel and the others, who knew nothing about this condition until I started my blog, for thinking of MRKH.

That in itself shows the power of what the blog has achieved this year

The concert raised £420.44 in the end with 50% going to MRKH Connect which is fantastic so Thank you again Rachel, Katerina, Ellie, Sarah, Sian, Helen, Mike, Sue, Dave (and his amazing shoes) and of course everyone who supported the event.

 

 *Banner image taken from http://emodiva990.deviantart.com/favourites/56796853/Musical-Notes

 

 

 

 

Advertisements

Love changes everything

I met Laura at a support group maybe 4 years ago.  It was her first support group.  She was about 44.

It wasn’t like Laura hadn’t wanted to come to support meetings before the problem was that she didn’t know the condition she was diagnosed with at 16 was something other people had.  She spent over 25 years thinking she was the only one who felt like she did.  She found out what she had actually had a name, and that there were others that had this, purely by chance watching an interview on This Morning. I’m not joking.

Laura came to this meeting with her husband Paul, the love of her life, best friend and her absolute rock.  I remember them sitting there next to each other holding each other’s hands tightly.  Paul looking with maybe concern and trepidation having just walked into a room full of people with the same condition as his wife which they had only just learnt had a name.  Not only that but of the two meetings the national centre in London has each year this was the one which splits the group in two so those with MRKH can talk opening and comfortably whilst partners, friends parents go into another room.  Paul was very uncertain to leave Laura, adamant that he shouldn’t but he had to.

Laura and I ended up in a small group chatting, she shared her story and it couldn’t be more different from mine in fact it was probably completely opposite and not just because of the age difference.  It was clear that this loud and feisty seeming northerner was hiding a whole world of pain inside only some of which I came to learn at that meeting, the rest since.  She was so excited although anxious to be there, finally feeling happy in many ways to have found other people who had what she had.  I remember her saying repeatedly ‘you know I am in my forties’, it became a bit of a catch phrase for her during the meeting and we were all laughing about it in the end.   But for her that phrase was born out of the frustration to be around a group of women largely in their late teens/twenties and having only just found out that this was what she had. How had it taken so long to put a name to this, to not feel so alone?  She sadly isn’t the only one this has happened to but I can’t imagine what that must feel like.

Whilst I don’t get to see Laura very often at all we keep in touch via text or email or facebook and it was her that suggested I might like to share her story particularly following my type 1/type 2 post.  Laura is type 2 with not only kidney problems but hearing problems and skeletal problems which have since rendered her unable to work due to the pain yet she had no idea they were all likely related until more recently.

At 16 after a series of tests, because like many she hadn’t started her periods, was ushered into a room by herself (her mum was asked to wait outside) as a doctor told her she was born without a womb, had one kidney and maybe one ovary.  Her world fell apart.  She had never been close to her mum only her dad and there was no cuddle no affection when she stumbled out of that appointment trying to understand what she had just been told just 2 years after her dad, the man she loved, had died.

Like many of us you get ‘the fear’ when you tell a partner, whilst I have always been open with partners it doesn’t mean it’s easy.  Laura had the same, but he simply said ‘It doesn’t matter, I love you’.   They married within 18months and nearly 30 years later they are still very much in love and have renewed their wedding vows with all their friends to their favourite song, ‘Different Corner’ by George Michael.

She describes herself as quite a shy child, the youngest of eight who never felt loved.  It wasn’t until she was 16 or so, working in a local supermarket that she found the person who she would become inseparable from, who would become that support and strength for her that she couldn’t have imagined at the time that she would need.

Whilst love is powerful and I know theirs is, it doesn’t always help.  Processing the condition at any age is hard we all know that and everyone deals with it differently.   Laura took it very hard she holds a lot of anger for her diagnosis, the lack of information, the feeling of being so alone, isolated and genuinely feeling like she was the only one in the world who had this condition.  She isn’t alone in these thoughts but at the time she didn’t know there were others.

She subsequently went to some very low places thinking that she had no other option, that she would never be happy.   Paul whilst sad and angry she had felt that she had no other choice could only reassure her that he would never leave her.  It was only then at her lowest point that she realized she really had met the most wonderful man and that her reaction was a cry for help.   Back then there weren’t specialist psychologists and she didn’t even know where to begin but she built her life with Paul feeling safe with him and that was what she had always wanted and he was what she had always dreamed of.

In many ways she has had a very happy and comfortable life with Paul despite the MRKH living many of their dreams across the country and abroad where they owned businesses together and worked those long hours to make something of themselves loving every second of working together because they hated being apart.

Apart from one, they always wanted a child.

When they got married the option was essentially adoption or don’t have children. It’s not like adoption didn’t appeal to them but they had just always wanted their own child and to them adopting a child just wasn’t the same.  They learnt at that first meeting at the hospital that there was now another option, IVF Surrogacy.

It’s fair to say they were excited, I remember talking to her about this at the time as I was also going through the initial stages of the IVF process.  She had a million and one questions, all valid and they all spilled out.  This was something they both wanted.  They both came away from that first meeting with elation not just at having had that chance to meet other MRKH women but that there might just might be a chance they could have their own child.  Despite their ages at this point, people do have children in their forties and this was more important for them than not exploring it.  They would never have forgiven themselves if they hadn’t.

Discussing your condition when you don’t know what it is hard enough, doing it with a consultant when you finally do know but when there is such a lot riding on it, something you haven’t stopped talking about, have wanted more than anything only to be told that you are definitely too old is heartbreaking all over again.  Whilst in some ways not unexpected, and they did know it was a bit of a long shot – but that doesn’t stop the hope and the sadness it can bring when in her case this was something she had always always wanted to give Paul and for themselves .

In some ways ‘she was just born at the wrong time’ as the nurse sitting in on the consultation said at the time, born a little later and that would have been a viable option for them but sadly it wasn’t to be.

‘Things happen for a reason’, something they have always said about their life and something we can all relate to in part.   I don’t believe in fate per se but sometimes things just happen.  That sadly is life and life sucks sometimes but it’s how we pick ourselves up and deal with it that is the strength we build and leads us to be the person we are today.

Life isn’t fair, if it was we would all get what we want and we all know in reality that isn’t possible.  Whilst it seems like others get what they want it’s all relative depending on what it is they have that we want.  Like Laura it’s a massive frustration to see other people seemingly finding having a family so easy and perhaps even taking that opportunity for granted but perhaps there are other things missing in their lives which we have and they don’t?  Maybe its love, maybe its strength, maybe its something else, who knows.

It doesn’t make it any easier to deal with and to come to terms with particularly in Laura’s case where she has battled with depression for some 30 years, is unable to work due to various conditions including osteoarthritis and fused vertebra and for her not knowing for so long and feeling so isolated only drives those feelings further into dark places.

The positive is that whilst they now know they definitely don’t have the option for their own child they have each other and what they have is strong and what they can do now is enjoy the trips away the laughs and the company that has continued to be the foundation of their relationship all these years.

‘Turn a different corner and we would have never met’

Thank goodness they didn’t turn that different corner.

 

As always if you would like support please follow some of my useful links and if you would like to comment on the blog or ask a question on this or any other of my blogs then feel free to send me an email