SURREALISM

Losing yourself in something, something that encompasses all you are and all of your time, can be one of the most liberating feelings in the world. But to wake up from that and be brought back to the harsh reality that this is actually your life, can be one of the most gut wrenching feelings in the world. It is more than surreal.

Dedicating your time, energy and money into something for the greater good; something that you know is needed and you know will be helpful, fills my heart and my life with a sense of purpose. A sense of reason and belonging. Because at the end of the day, all you get out of life is what you give.
I can lose myself for days at a time focusing on someone else, trying to think of things to make their day just that little bit easier or that little bit better. I won’t stop doing that, because I know it is something I want to do and I enjoy doing.
Focusing on other people has always been an escapism for me. The harder and the longer I think about other people’s problems, and how to help them, the less time I spend on thinking about my own.

The saying that someone always has it worse than you is one of the most unjust and unfair statements I can think of. To invalidate someone’s feelings and compare them to that of a starving child in Africa is not only cruel and unnecessary, but it is detrimental to their recovery. Every problem we have is relative to our own lives. If the worst thing to ever happen to you is chipping a nail whilst preparing dinner, then of course the end of your favourite Netflix show is going to be a rocky road. But for someone that has dealt with an insurmountable amount of pain and heartache, telling them not to moan because there is a starving child on the other side of the world with 99 more problems, only pushes them further down. It’s the equivalent of telling someone not to feel so happy, because someone has it better than them.
When someone tells you it is going to be okay, and that it I will get better, I don’t doubt them. I know the only way is up. But minimising someone’s pain does not help. “It is much more bearable to be sad when you aren’t constantly berating yourself for feeling that way”

Allowing yourself that bad day and facing those feelings head on, can surely only make you appreciate the good days more. But what if the thing you have been trying to escape is pushing it’s way to the surface again, and you know you can’t handle it. What if you are running out of other people’s problems to immerse yourself in. It’s only a matter of time. And you know it’s coming.

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STANDING STILL AS TIME IS MOVING

How is it possible to move forward when you feel completely stuck; at a stand-still? I have reached a point where I feel I am sat watching everyone around me achieve great things, find great relationships and ultimately, find happiness.

I am so lucky to have such an amazing family who helped me get to New York to see my best friend. Those 2 weeks away truly made me appreciate how important it is to connect with someone going through exactly the same thing. It was life changing, to say the least. Finding someone who radiates empathy and compassion, and to be able to put the world to rights with them, is something we should all get to experience at least once in our lives. And the dozen champagne bottles that accompanied every talk.

Those 2 weeks flew by, and with a very emotional goodbye, I am sat at home again feeling completely lost. I have a lot of work to do, and a lot of things to occupy myself with, but I find myself procrastinating – as I do best – waiting for the next day to come. The next month. I don’t know what I am waiting for, and that is the hardest part. When I try to picture my life in the next few months, let alone few years, I don’t picture anything. I get stuck on today, and how everything in this moment is a fleeting image that I am likely to forget. I am longing for something, be it change or direction, and I don’t know how to get it. Time is moving so fast, and when I look back everything is a blur, but the day to day is what I need to start taking advantage of.

Life is made up of time; our days are measured in hours and our knowledge is measured by years and experience. And yet time still runs out, it is the one thing we can’t stop. It makes me wonder if those seconds, minutes, hours, days, weeks, months and years, are being spent the best way they possibly could. And I don’t think they are. I feel there is a lot missing, maybe too much.

GIVE OR TAKE

1 year, 5 days and 5 hours since I last had a job, walked into an office or had some form of money going into my account instead of being withdrawn. Coming back from Australia has been and up and downhill struggle, as well as being the best time of my life. I was fortunate enough to have saved a lot of money whilst being in Australia, some of which I frivolously threw away on skydiving trips and Sunday sessions at the pubs. The rest of it I put away to see me through until my next endeavour. Luckily.

Monotonous 9-5 jobs, making small talk with people who couldn’t care less and sitting on the uncomfortable office chair staring at your computer screen wishing it was Friday afternoon, is something that terrifies me. “Never date a girl who travels” is making an appearance all over the internet at the moment and nothing has made me want to get up and leave more. I have made countless attempts at getting jobs and attending interviews over the last few months but nothing has worked yet. Possibly because “Biscuits and sarcasm” is not an appropriate answer for your weaknesses during an interview with a woman who could have done with both.

Between the repetitive clicking of the Apply Here button, I have had some time to focus on MRKH again. And because of this, I know I have not applied myself completely in the job search. I do not want a job that doesn’t involve MRKH in one way or another. Be it supporting someone, advising someone, or even educating someone about it. My mind is full of ideas but without the income to get anything started, it seems to be a never ending battle. Apply for one job and lose time focusing on MRKH. Focus on MRKH, and lose time looking for the job to help me get there.

Amongst this, I am still having the daily battle of using those dilators. The Nurse and I joke about how much free time I have, and that I should be done in a week! This is definitely not the case. I was making time in my day to do it, and I was making progress. But some relationship angst stopped me mid-journey. I broke things off with a guy I was seeing only to find that he is now in a new relationship. Well, according to the relentless laws of social media, it must be official if his Facebook status had changed. Seeing the 30+ comments that followed underneath, I was curious to say the least until I found his comment. After his friends were joking around and congratulating him on the new relationship, I read his comment that very bluntly said: “Don’t worry guys, I’ve been given a real vagina now!!” I stared at my screen for what seemed like hours, deciding whether to use this as a boost to help me finish the dilation, or to sit, cry, wonder how he could be so cruel, and drown my sorrows with my number one weakness … Biscuits. Needless to say, the latter prevailed.

And now that I have finally got that off my chest, I can now continue the job hunt with a clear mind. Right after my cigarette break. And another biscuit.

WOULD YOU CHANGE IT?

MRKH is becoming more and more prevalent in my everyday life. Things are moving at such a fast pace and there is nothing more exhilarating. Whilst this being true, there is also nothing more daunting.

Recently, there has been a fair bit of media attention around MRKH, and I know there have been mixed views. I admire all the girls that have taken the time and showed outstanding courage to tell their stories. However, I feel that the media has caused such a riot around this. From less than tactful headlines to terminology that is enough to make anyone think twice. Seeing some of the hate comments makes me so outraged and sad for them. To go out and tell your story to the whole world is amazing, and for someone to sit so cowardly behind a computer screen and compose a paragraph that could ultimately destroy a person’s outlook is disgusting. I have never risen to their shout out for controversy, and I never will; they simply don’t deserve any one’s time of day. And it is in spite of all this, that I am willing to take the comments in my stride and try to make a positive difference.

I have recently been given the opportunity to appear on a television episode. This would give me the chance to talk about MRKH, to diminish the stigma and ultimately raise more attention than we are already doing. Hand in hand with this opportunity, is the chance to make a wrong move. The media have an astounding way of turning something amazing, into something so controversial that it sparks reactions from all over the world. I am so touched to have been given this chance, but there is so much responsibility resting on my shoulders. I would go into detail about my MRKH journey, about the work I am doing now and where I want to be in the future. This is an easy enough conversation for me to have with one of you girls, and even some close friends, but to disclose this much personal information staring into a camera lens knowing that this will go out to the general public is a bit intimidating to say the least. If I were to go ahead with this opportunity, I would be doing it for all the young girls about to be diagnosed, for the girls that haven’t spoken a word since being diagnosed and for anyone that is willing to hear my story. This isn’t a personal boost for me; to make myself feel better and clear my head. Just knowing that if only one girl saw this show, and realised there is nothing to be ashamed about, then that is good enough for me!

Connecting with girls in similar situations all around the world has been life changing for me. From Australia to America and my home, the UK. If it weren’t for the media, this is no way would have been possible. If you try to Google MRKH now, you are hit with an array of options. Blogs, websites, support groups, Facebook pages and so much more. There will always be someone who is at the same stage as you, and I have been lucky enough to connect with this person. To be able to help and support each other from half way around the world is incredible. The thing that has kept us as “outsiders” from so many situations, is now an opening into someone else’s life.

I was asked a question on the interview for the TV show that really stuck with me. “If you could wave a magic wand, and not have MRKH, would you take it?” Depending on the day I think we all have different answers. But the one most prevalent to me now, is NO. I have MRKH and there is nothing I can do to change it. But the doors I have opened since having this, and the relationships I have made through it are more than a compensation. The friendships are so true, and give you the chance to connect on such a deep level compared to other friendships. They force you into something so real, and so meaningful, and I don’t think any of us should be without that. So if I get this interview and it moves forwards, I am going to take it and shout from the rooftops until girls like me, find people like you. It really is my saving grace.

MRKH AWARENESS

“In the middle of difficulty, lies opportunity”

This past month has definitely been a test of my faith, ability and courage. It has been an exciting month none the less and every day is pushing me forwards into a world where I can only imagine is going to be better.

I returned from my hospital appointment at the QCCH and I can honestly say, despite how personal and invasive it was, it was one of the best things I have done. I spent 3 days there with the nurse learning how to use these dilators, and whilst it takes all of my energy just to have a 10 minute session 3 times a day, I know that it will all be worth it. People ask me how I do it, is it easy, does it hurt? And my reply to you… It is hard. It’s hard to make time in the day to go and do something you know is going to cause you discomfort. But I wouldn’t have started this leg of the journey if I didn’t think there was any hope of me finishing it. And like they say, nothing worth having is easy.

I also went back to the QCCH for a support group where I met more women with this condition. To see a room full of people, happy people, was emotionally overwhelming. Speeches were given and information was thrown left right and centre, but through the midst of it all, I couldn’t stop smiling. To think a few months ago I had never spoken face to face with another woman about this, to now be sat in a room where if you didn’t have MRKH you were in the minority! Breath-taking.

Amongst all this, I also hosted my very first event night. There was a pub quiz, some live music, silent auctions and people. So many people. Some of which I’ve known since being a child, and some I have maybe met in passing once or twice. To have the fantastic turn out that we did really touched my heart. It just goes to show that people are incredibly supportive and even more so they were inquisitive. (Or equally just fancy a couple of pints and a quiz!) They asked questions, they wanted to know the ins and outs and I was able to tell them with pride. All the shame and embarrassment seemed worlds away and I am so excited to continue on this road to spreading the awareness even more.

“I’ll keep believing in clouds with their sweet silver lining”

 

THE NEXT STEP

“There comes a time when every life goes off course. In this desperate moment, you must choose your direction.”

There is so much pain in the world, and it seems to be conveyed to us by every means possible. Through the internet, news, radio adverts, and interrupting the guilty pleasure of day time TV. The pain that really makes you wonder how it‘s still happening in a world as advanced as this.

It was this that got me thinking recently; I am okay. Despite everything that has been thrown my way recently, I can still wake up in the morning with a smile on my face. I still have the day to wake up to and I have the ability to do anything with that day.

I have my hospital appointment in London on Monday and it would be a lie to say anything other than I am absolutely petrified. I have never seen a specialist before, let alone ever really listened and tuned in when the copious amounts of doctors have tried to explain this condition to me. As I have said before, it is usually my mum who accompanies me to these appointments and then later deciphers the medical terms into something I might actually comprehend. I think it was this fact, obviously not alone, that made me decide to go with a friend and leave my mum at home. For the first time that I can remember, I won’t have her there to ask the questions and take in a ridiculous amount of information that is thrown to me in the shortest time. I am doing this for myself, so that I can come away from this and know that I have made the first move and understand completely what my options are and what road to take. I am doing this not only for myself, but for my parents too.  Despite what they may have said, I still feel there is a lot of guilt there, and I think that going alone and showing them that it is something I can handle will alleviate some of this pain. I hope.

 I am set up to see four people; the doctor in charge, two nurses and the psychologist. It is extremely overwhelming to say the least, but I am going to take full advantage of this opportunity to find out every unanswered question that is sat scribbled in the back of my old notebook. I’m not sure what to expect from this, be it closure, a sense of relief, or the encouragement to restart this journey and push it onto the next chapter.

There’s a part of me that is itching to come out and panic, making me do stupid things like cancelling the appointment and never giving it a chance. But slowly, and hopefully surely, I am learning to keep this at bay. I am trying to not over think the decisions I have made and let whatever happens, happen. I have nothing to lose right? From an early age the doctors, (by no fault of their own) have taken pieces of my dignity and self esteem that I try to fight back for. So hopefully this is the time, and my unanswered questions will be satisfied and I can leave feeling a sense of accomplishment. I can scrape back that last bit of dignity and throw it into the next step. God knows I’ll need it.

REASONS OR LUCK?

Friday night movie called for something containing reason and putting a point to everything going on at the minute. After having a rough couple of weeks with general life issues and the passing of close family, I found myself questioning why everything happens the way it does. 

I watched The Adjustment Bureau, which in short, explains that life has a plan for everything. There is a reason why we spill coffee in the morning, or lose our car keys, or anything ridiculously mundane we don’t even begin to contemplate why. But what if this all does happen for a reason, and you miss the bus to work and arrive late, and don’t bump into someone on that trip that could have changed your life in a way that is incomprehensible. How will we ever know?

 

In MRKH terms, I can guarantee we have all asked the same questions in our head and come out with a different reasoning depending on the current mood. When we have a good day, the reason may be.. I have MRKH because I was not meant to have my own children, as there are so many in this world already relying on the promise of adoption, so I will be doing good. On a bad day, I have MRKH because I am being punished for something, may even be the footnote for the day. 

But in my opinion, we have this condition because. Just because. There is no profound reason for it, for definite, that I can come to and agree with every single day. 

We may have it because:

We are given issues that we are strong enough to deal with; its a test

We are meant to help the children already unwanted in this world 

We are guinea pigs for the medical community to find a cause to help the next generations. 

I don’t know to put it simply. I have given up challenging myself into a constant battle with this a while ago, when I came to accept that I have this condition and what will be, will be. But what if there isn’t a reason for this, and it is just a load of bad luck. 

Free will is something that has been, and will always be, taken for granted. We make the choices we do based on a process of weighing up pros and cons and hope for the best. But if it isn’t free will at all, and everything is part of a plan and happens for a reason..then who are we to question it? Roll with the punches and love the great things that happen, but never accept the bad when you believe you have the power to divert, or even hopefully change the outcome. Never leave it wondering why, or what if.

THE VOICE

Depression has a stigma, that like MRKH, comes with inevitable questions, awkwardness and sometimes just plain, cold silence. People may look around the room trying to find something they can drag out of thin air to move past the confrontation. The weather, last nights tv show or even the offer of a coffee (that they will never return with, but a plausible escape clause none the less.) One time, someone even laughed. Whether it was a defence mechanism they were hiding behind, and had no other way to deal with the statement or not, it is still an uncomfortable thing to face.

My main explanation for this sort of response is lack of understanding, experience and factual knowledge around the subject.

This in turn leads people to come out with the worst reaction possible to a depressed person.. “Well we all get bad days” and yes, of course we all do. But the thing is I am not in control of mine. The same goes for MRKH. When you try to skirt around the medical explanation or the discovery of this condition, most of us may say “I can’t carry my own children because I was born without a womb” and I’m sure I’m not the only girl out there who has had the reaction of “oh my god so you don’t get periods? You are so lucky!!” And at that moment in time I’m sure we all want to make their next period come out of their nose from a smack in the face. Possibly with a chair. But that wouldn’t be the best way to handle it. So we smile, and nod along and pretend to be thankful for all the money we can save on that aspect of life! But the thing is we can’t control it. It isn’t our fault, just like depression. In a way, I think MRKH has chosen us girls because we are strong enough to cope with the journey it brings. The ups and the downs in life are inevitable. But how blessed are we to have our very own group of supportive sisters at the click of a button, a phone call, or lucky for me, 5 minutes down the road.

Despite all that, it still hurts. I’m slowly learning that I can’t take every little comment to heart. Or every time I see a pregnant woman, or a lady with a pushchair, or even something as simple as being asked for a tampon from your friends; it’s ok to let it upset you. You just have to learn to not let it control you as much, or take over your mind completely and analyse every word obsessively for the next few days. Easier said than done, I know. But these people don’t know our stories, and they can’t tiptoe around their lives when they haven’t the faintest idea of what we are going through.

But what if they did know? What if in the future MRKH is as well known as depression? Yes of course there is still a slight stigma attached, and I’m sure there always will be some. But if we are living in a world where day by day that stigma is diminishing one step at a time, why can’t the same be done for us girls. Informing the world of this condition, educating people so they aren’t afraid to ask questions and liberating ourselves to a point beyond any imagination, is definitely a world I want to live in.

Depression has the ability to bring the strongest person to their knees in minutes, be it from a comment, a movie, a song..and I think the same goes for MRKH. It has the power to consume us and isolate us for days or weeks at a time. But I think the more that people know and understand about this condition, the better and easier it will be for all of us suffering. It won’t be something we are afraid or ashamed to talk about due to lack of understanding, but something we take pride in sharing.

We have the ability to make our voices heard, and what better time to start than right now? My journey has just begun, and even telling a handful of people close to me has been an amazing experience. I’ve cried, I’ve laughed and at times regretted doing it, but the main thing from all of this, I’ve educated. If even just one more person from today learns about MRKH, then that is one more person closer to getting it out there, to being heard.

THE BIG RETURN?

It would appear that having a few days away from MRKH has not done me any favour whatsoever. All the words I’ve written and the realisation of my “new life” seem to have vanished from my mind set completely. 

 

The last month or so where MRKH has been at the forefront of my mind and my actions was amazing, and pushed me forward in a way I never thought possible. It gave me the motivation to make change. But life gets in the way sometimes and it is physically and mentally draining to focus all of my attention on one of the main things that defines me. So I stopped thinking about it for a while; I put it back in my little box where it used to be and is clearly very comfortable being there. But I’m scared that in the process of doing so, I’ve taken a step backwards into the self loathing and shame that comes joint at the hip with this syndrome. I don’t feel at ease talking about it now and a part of me wishes I could retract everything from Facebook and this blog. I’m not going to do that though. I understand this journey will have good and bad days and I need to take them in their stride whilst trying to keep myself positive. But by no means does that make it easy.

 

I think part of the issue right now is returning to the UK. I was on such a high being able to speak about MRKH for the first time in my life, and I know that adrenalin and an overwhelming sense of connection and empathy had a huge part in me “coming out” to my friends and family. So when I go home now, it is going to be real. It’s out there, in the open, and I have to face it with the courage I am so desperately trying to hold on to. But what if that isn’t enough? I need something to believe in again. 

 

I spent the afternoon googling and youtubing MRKH interviews, videos and blogs. It has almost given me that little something I think I needed to get started again, while at the same time making me unbelievably angry. Angry at what exactly, I am not so sure of. All this false information being thrown around the Internet, the interviews aiming to diminish stigma but causing more pain than good, and these poor women all over the world lost in translation trying to find an origin for support and being directed to cold and hurtful “informational pages” instead. BeautifulYouMRKH is the go to page for support and information. It is run for MRKH warriors, by MRKH warriors with endless comfort, advice and support. Nothing is driving me more than seeing this page have a new follower every day, making me realise that any one of us can make a change, at any time.

 

So maybe it was that, that pushed me to do the following. I emailed the Queens Charlotte hospital in London; I have made the first move. I enquired about the surgery and am waiting on a date for a consultation to explore the options. As soon as I clicked the send button on my email though, my heart sunk and I cried. What was I doing? Im also lucky enough to be lumped with depression, or “The Black Dog” as known by those of us suffering, too. It is a demon in its own right. Joined together with MRKH, it is the purest form of evil. The constant battles in my head leading me to make a decision one minute, and the next have me tumbling down, doubting everything I have tried so hard to achieve. 

On a bad day, I want to do nothing. Getting out of bed is the biggest feat of the day and I can do nothing but lie there and let it happen. It destroys me each and every time.

But on a good day, I want to change my life. I want to change other people’s lives. I’m hoping that by “fixing myself” when I get back to London, I will have the strength to do  so. Be it through, writing, studying or working, I want to get MRKH out there. Even if it just helps one person, I will be overwhelmed. Because living and dealing with MRKH, 2 in 5,000 feels a lot better than 1 in 5,000 <3

DECISIONS

Another day sat in the bondi flat deciding what I can do to move forward again. I don’t have enough hands to count the times I’ve battled with myself over what to do, but today seemed to be different again.

After meeting up with my little god send of a “sister” this afternoon, pondering life over cigarettes and beautiful north bondi sea views, I know I have to make a decision.

I’ve been caught in this never ending cycle of questions and doubts for a few years. The MRKH Decision. Whether to do anything to our ‘beautiful selves’ or to leave our bodies as they are. Anyone I’ve spoken to or met has already been down the route of trying to fix themselves. I say this not as a negative thing, but from my perspective I think that’s what we all want to do or are still trying to do. We have this huge hole missing from our lives that has usually never crossed any other woman’s mind, the fact we can’t have sex or carry our own children. Never in a thousand years did I think  this would be a problem I would have to face. And by no means do I think I have it harder than anyone else, but I have this added issue of the sexual assault.

My cycle starts with.. I’d love to get close to a guy, to be in a relationship where I can be totally and unconditionally in love with someone, and experience all the things any other 21 year old would. So why not go and fix it and have the operation or use those dreaded dilators to bring back something that should have been rightfully mine in the first place. But then I get stuck. What if I do all this and put in so much effort to get myself back to a state where sex would be possible, but I can’t do it because of the mental instabilities I have about getting close to a guy. I’ve been in situations since it happened where I’ve spent the night at some guys house, but whenever he does try to make a move or his hand goes in the wrong place, or even just something as simple as a kiss, I freak out. I just get images of this guy doing that stuff to me all over again and I lose all sense of control and run.

I need to pick one. Either sort myself out and get it done then deal with the relationships when or if they come after, because I will physically be in a state where it is possible. Or, I can go and try to come to some level of understanding with what happened to me, and test the waters with a guy. If that works then hope and pray he has the patience and the mental capacity to understand MRKH and wait for me to fix it. But how the hell do you find that guy? Maybe being 21 at the moment doesn’t give me the greatest advantage. How many 21 year olds do you know that are willing to give up sex for a relationship they probably won’t be in for longer than a few months at best. I know none.

So at the moment it’s back to square one on the MRKH decision. But, what’s new from today, is that I know when I get back to England I have to pick one. Whether its from getting blind drunk and letting the truth come to me about what I really want, talking it over with my girl friends or my beautiful girl here, or just flipping a god damn coin. I know I have to choose if I want to keep forward on this journey. And I know, that I will never, ever, let this god forsaken struggle become my identity.