Diary of Diagnosis Day

6:00am. I am thirsty and tired. I am nil by mouth as required for this afternoon’s standard procedure, a laparoscopy at the Royal Berkshire Hospital, UK. Although, I am not quite sure what all this fuss is about. My GP some weeks ago uttered, “Alison, no need for concern or alarm.” So, based on the doctor’s advice, I have decided to not give today a second thought and enjoy this rare day off from studying for my A-Levels exams. However, I only have three months remaining before my final exams and I am not quite sure how I am going to pass them, let alone become an aspiring thespian, which has always been my dream. Why do I feel like such an outsider at the moment, in a place I have been every day for the last six years? I am physically there; sitting amongst my friends but it all sounds a bit muffled and foreign. Granted, I have not been kind to myself over the recent months. My regimented intake of only one hundred and forty calories a day, compared to yesterday’s disgusting act of gluttony isn’t doing my self-esteem much good. This is driving me to despair. Who is this Ally that is making my life so difficult all the time? I know harming myself is only going to give me a moment’s bliss, followed by the stomach churning fear of how I am going to explain this cut and that mark and what happens if they make me change in drama class again and someone sees it. What is so wrong with me that I encourage such anger, self-hatred and obsessive control?

8:00am. I am perched on this really hard starchy bed and my mum is being gentle and attentive and funny as usual, when the nurse informs me I am scheduled for surgery just after lunch (what lunch?!). Gosh, I am thirsty and bored. The walls are so white and devoid of care, which seems strange for a place built to do exactly that. But still, how lucky am I to get a day off school.  My best friend said she will come and visit me later today after the operation, as she works in another part of the hospital and I am tickled pink that in a matter of hours, I am going to be just like her. We have been friends for twelve years now and I don’t think there is a topic we have not dissected or giggled about? Inseparable, infallible and soul shares to the most intimate degree.

1:00pm. It’s my turn, finally! Wheeling me down a bleak, concrete corridor seems so morbid and cold, yet I still cannot fathom why I am not experiencing any bouts of nerves or fear. I have been consulted about the laparoscopy procedure which seems all very straight forward. A small camera inserts into my belly button under general anaesthetic and hopefully, I will wake up and head back home in time for tea. The nurses are smiling at me now. I am reassured and comforted as the anaesthetist softly asks me to count to twenty.  One, two, three…sleep.

2:00pm.”You have the prettiest eyes”, I slur. “Thank you” said the nurse adjusting my oxygen mask. Why on earth are my shoulders so sore? Was there a careless porter using my shoulders to open the swing doors or did someone accidently roll me off the operating table during my procedure? As I am overwhelmed with pain and disorientation, I feel my mums hand wrap around mine, and finally, finally I think, I AM NORMAL. I wake up to find my friend sitting on the bottom of the bed. “How are you feeling Ally?” still slurring, “give me a couple of hours and I will be up and about in no time, I am just like you now love.” I actually realize, I won’t be going anywhere for a few days as I sense a group of ‘strangers’ have just prodded me down there for a good hour. However, I have this feeling that life is going to get much better and I can focus on the things that matter, like boys and drama classes. And I suspect, learning how to address periods and things.

3:30pm. The doctor commences his postoperative rounds. I am at the opposite end of the ward and like all the other women, waiting for my debrief, stale ham sandwich, and explanation as to why I still have not received my first period. Shortly, I suspect I will be discharged to make my way home and commence life as a young teenage girl, all intact. Out of sequence, and unlike others, my curtains are drawn. I pause and then look for my mum. She is confused and looks back at me. I am confused and look at him. The nurses seem sad and look at each other and then the doctor just stares back at me, with his sharpened pencil and a photo-clip, “ Alison, you have what is known as MRKH; Mayer-Rokitansky-Küster-Hauser, the four physicians who first who first diagnosed the condition.” What do you mean no womb and no cervix and why are you talking to me about dilation and conventional sex lives versus not. Surrogacy, adoption, routine and open seminars for ‘girls like me’, I really just want to go home now please. “Please mum, I just want to go home!” I feel so sick, but there is no food to be sick with. My eyes flicker from side to side anxiously, and I look over to see my mum whispering into the telephone with her eyes closed, “we need to take her home, I have very bad news.”

4:00pm. My dad is sitting on the bed’s edge, holding my hand in a stoic, comforting and kind way. In the midst of my recent diagnosis, I believe that this is the time to confess “dad, last week I got a tattoo.” Pause. “Well, that is okay Ally; we don’t have to talk about this now.” My relief is comforting but my tears soaking through the fabric of his trousers as I rest my head on his knee, seems painfully real. My parents discuss me in the corridor and what has just occurred over the last eight hours. They look pale. I am not privy to their conversation; I do not need to be, as my grief is now their grief. The doctor politely explains to me that I have not been hit by a swinging door but in fact, my whole body was expanded by pumping excess air into my abdomen, so they could navigate the camera around my internals with a bit more ease. A common side effect just so happens, is extreme pain in the centre of the shoulder blades. Who cares!

Oh God, I am not like my friend, nowhere even close.

5:00pm. I am home. I am so, so tired, I just need to sleep.

————————————-

Present day. That was me sixteen years ago. A week later I went to the Queen Charlotte’s and Chelsea hospital and spoke with a consultant about the next stages of treatment. For the next 12 months, I would go through all sorts of self destruction. In fact, it gave me a license to push the boundaries even further with how much I could possibly hate myself and hate the world. The isolation of such news is beyond harrowing, it is physically gut wrenching stuff. At the time, I was fortunate enough to be in a relationship with someone who was calm and compassionate, non-judgemental and accepting (as I remember it anyway). The first leg of this journey could have been much worse and my opinions of men from the get-go could have been tainted with cynicism and fear. And, although the relationship predictably ended just after diagnosis because I could not cope, I owe special thanks to him out there.

However, my associations with people changed to those who could not identify with my pain or at least be in equal amounts of hurt also, I never sat my A-Level exams, my dad was not okay with the tattoo after all and I wish that I had met someone like me earlier. My friend is still my best friend, though I never made it as an actress and my relationships have been conventional but just as hard as any. My parents have been wonderful, a blessing and a joy and my mum, experiencing guilt as the maker of my demise, seems at peace with MRKH and the demons it brought her along the way. The treatment worked and acceptance came. I always say, that talking about this will not eliminate grief. Grief is guaranteed, however if I can reduce ten years of pain to one for someone else, then I will write for the rest of my life. MRKH sisters don’t need the same DNA to link arms and unite, to love and be loved. That feeling at 5:00pm is the silent sisterhood.

– Ally

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3 Responses to Diary of Diagnosis Day

  1. Becky Omrkh says:

    I find myself at the coffee table which is covered in crumpled tissue and am baffled at the closeness and connection I feel to someone I’ve never met. I do hope you write the rest of your life because your words are worth more than money can buy. I appreciate you sharing your story. Your description matched so many things I experienced 20 years ago. I was met in the present by a future friend who understood my past. You’re right, we don’t need to share the same DNA to be sisters. Thanks for meeting me at our 5 p.m. A silent sisterhood synchronized time that spans different time zones, different generations and different stories.

  2. Ally Hensley says:

    What a touching and sincere response Becky. I am somewhat overwhelmed by your words and feel very happy that we can relate to one and other; from different countries, and yes, in different time-zones. How privileged am I that this foundations brought women like us together. Thank you.

  3. Christina says:

    Ally,
    Your posts always leave me with shivers. That last line brought me to tears. (Happy tears) Thank you for sharing your MRKH journey with all of us. You are an amazing woman!
    XOXO,
    Chirstina

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