Question 1

1

I am afraid to go out

This has been a huge issue for me growing up but it always fluctuated with my anxiety levels, with my intended destination and with whatever I needed to do when I got there. Because of the IA I have always had very little control over my bowel, if any.  When I was relaxed and happy for a long period of time I would be constipated, there would be a ‘build-up’ and when I became anxious in any way my tummy would read my mind: I would have no control over my bowel movements. Accidents would frequently happen at school. I was often called ‘smelly’, or children would hold their noses in disgust at the foul smell coming from my direction. The teachers had little knowledge of how to react. Writing about this now I feel that if incontinence had been a recognised disability there would have been a plan put in place by the school to support me both physically and emotionally. I know that my mother tried her hardest to make the teachers understand my difficulties but I think that few of them really understood. I believe they thought mum to be an over reactive, over protective parent who was very anxious about her child.  

Needless to say I hated going to school, or even out of the house for long periods of time.  I could never make myself feel safe. It was if my stomach was not part of me, it was sly, like a like a bully. I labelled my stomach as a ‘bad’ tummy. Not that it was ‘bad’ at all of course; it was just doing what my anxious thoughts instructed it to do, but it felt as though it was taking great delight at the extent of my suffering.  As a child I believed my tummy would suddenly decide on its own that it would develop pain and make me embarrassed, and then the inevitable would happen. As I was not born with the muscles in my anus to contain the faeces there was absolutely nothing I could do about it. You can imagine how unsafe in the world I have felt.  I often think I was born anxious. In fact I do believe that anyone who is born with a disability is born with a heightened degree of anxiety. For me in particular there are several compounding reasons which combined to demand that I started life with a huge dose of anxiety.

I was taken away from my mother 12 hours after I was born, in what was then Boscombe Hospital, Dorset.  I was the centre of an emergency convoy, police escort included, travelling to Great Ormond Street with a caring but rather confused nurse for company. My mother Dori re-tells the story beautifully, as only a mother could …

I was awakened in the middle of the night to the sound of urgent whispering. Still exhausted from giving birth I turned my head and fell back to sleep. It wasn’t until the early hours of the morning that I was again roused, this time more abruptly.

‘Mrs Smith, I am very sorry to have to inform you that your baby daughter needs to have an urgent operation to save her life and we are sending her to Great Ormond Street in London.’ These words are burned like a hot brand in my memory.
I felt as though someone had hit me hard in the chest. ‘What are you saying?’ I managed to gasp.
‘We have to take your baby to Great Ormond Street in London. She was born with an Imperforate Anus and needs to have an urgent operation to save her life. I have brought her to you in order for you to say goodbye to her.’ I was wide awake! I sat upright and reached out for my baby. The nurse brought her close to my chest and I kissed my baby, smelling the sweet new born smell. I didn’t understand what an Imperforate Anus was. I had never heard of it. I was too scared to ask.
‘Try not to worry Mrs Smith, she will be in good hands, but we have to get her into the ambulance now to get her to London.’ The Sister stiffened and her words were sharp and direct, as if she was afraid to show too much concern.  I reluctantly kissed my daughter once more and could only watch as my baby was taken from me and rushed through the hospital wards’ doors. I can almost see and hear those doors closing even now.
‘Please let her live!’ I whispered in God’s direction … 10 seconds that changed me and my life, forever.

The unnamed baby slept in the ambulance, speeding up the M5 with sirens blaring and a 4 motorbike police escort. The nurse who held her tried her best not to allow the bumps and undulations of the road to affect the baby’s sleep. After an hour and a half traveling the baby was growing hungry and she needed her mother. ‘No food for you little one,’ the Nurse sighed, ‘not until you have had the operation.’ The baby opened her eyes briefly as though she was trying to understand.

There was a small welcoming committee to greet the little new born. The Staff Nurse looked at her watch and sighed. ‘Her operation is scheduled at 1.00pm. What religion are the parents?’
The nurse handed over the little bundle and looked shocked at the question. ‘I‘m not sure!’

 ‘No matter, it will be on the paper work.’ The Staff Nurse nodded towards the file that lay on the floor of the ambulance. She rummaged through the file and found the relevant information. ‘C of E,’ she confirmed. ‘Jolly good, the hospital church is the next place of call for this baby. What have her parents called her?’

The nurse examined the file again. ‘The baby doesn’t have a name!  There is no record of a name here in her records.’ The Staff Sister sighed heavily, ‘You will have to phone the ward and speak to the mother. We need a name for baby … Smith’.  The surname was visible on the outside of the file.

The Staff nurse found herself dialling Mr and Mrs Smith’s telephone number. She had been informed that if the Christening for Little Baby Smith was to take place at all it had to happen without delay.

Norman chewed his bottom lip hard. His whole life had been turned upside down in the last few months.  During October he had moved himself, his wife and 13 year old son from the Midlands to sunny Bournemouth to start a business he knew nothing about.  His plan was to be able to employ staff in the shop so that Dori could look after their baby and their son. Best laid plans! They had found themselves almost bankrupt after the first two months and only had £20 left.  Everything depended on paying customers. Dori had worked desperately hard, up to and including the day before she gave birth. She hoped to have the baby on a Monday (which was their day off) so that she could get back to work in the fish shop the next day. A baby with abnormalities was not part of this ambitious plan. The thought of losing it was buried deep at the back of their minds. Never did they consider that the baby would be born with abnormalities and the idea they might lose their baby was unthinkable! Customers were lining up and the vats had just reached the required heat for frying when the phone rang.

 ‘We need to know what name you and Mrs Smith have decided upon for your daughter as we need to perform the christening here at Great Ormond Street Chapel before she has her operation.’ The nurse spoke to Norman as quickly and directly as she could. Norman was stunned. He was on his own trying to open up their new fish and chip shop business, this was his busiest time, and his family, his future, his life depended on him getting everything right.  ‘Really?  Is this truly necessary right now?’ Norman asked concerned, not only for his baby but also for the customers who were waiting in the shop.    

‘Yes, Mr Smith, I am afraid it is, it is very urgent. We know her name as we cannot be sure…’ her voice softened, ‘we cannot be sure that she will survive. The operation we need to perform on her was perfected only a few years ago and although we expect that she will pull throughn there is always …  I am so sorry to have to ask this of you at this moment.’          
                                                                       
‘I don’t know what to call her, I think Dori wanted Katherine and her middle name is to be Elizabeth. But I don’t like Katherine and I wanted Avvone’. Norman went quiet for a moment. His eye landed on someone in the shop counting his change. ‘Could you ask Dori? I really don’t know what to say.’’  The nurse straightened, she really didn’t have the time to contact the mother and she was very disappointed that the father didn’t know the name of his child. ‘I am so sorry,’ Norman continued, ‘I don’t want to get it wrong and upset the wife!’

‘Very well,’ the nurse replied curtly. ‘I will do my best to find out.’

The nurse replaced the receiver, and a rather anxious Doctor peered around the door. ‘We need to do this now! The operation can’t wait.’                                                                                                                        

‘But I don’t know her name!

‘Sorry, too late, you will have to choose one for her.’

It was the nurse’s turn to chew her lip. What did Mr Smith say? Definitely ‘Elizabeth’ for her middle name.  Katherine or Avvone …she knew a woman called Katherine and she didn’t like her, Avvone sounded like Avon and the child will be teased, kids will say she is selling make up, she thought to herself. The little baby girl was handed over to her care once again to be carried up to the Chapel. The nurse shivered a little as she stepped outside. It was one week until Christmas… this baby needs a strong name to see her through this operation, a name which will ask God to bless her… then it came to her. Of course,’ Christina’, perfect! In Bournemouth people bought chips from a man in a trance.

The little golden chapel was beautiful. It was small but very ornate. The walls were covered in gold gilt and it was always kept warm. As the nurse entered the chapel with the doctor she made out the silhouette of the hospital vicar standing in front of the beautiful stained-glass window and behind the font, already filled with holy water. The baby was growing weaker and she did not struggle or make a sound when the nurse gently handed her over to the outstretched arms of the aged vicar. The old man sighed with heartfelt sympathy for the little bundle. He had had to perform many emergency Christenings on many occasions and he felt honoured each time. ‘The parents?’ he asked expectantly and hopefully. The nurse shook her head and told him that they were in Bournemouth. ‘What is her name to be?’ he sighed once again with love, and gazed appealingly at the beautifully decorated domed Chapel roof, as if he was asking it the question

The nurse smiled nervously. Nobody knew she had secretly named this baby. ‘Christina Elizabeth Smith.’  The chapel roof and the baby both liked the choice of name. Christina opened her eyes to look at the holy water and the spirit above.

Dori Smith lay awake in the maternity ward looking towards the ceiling. She could hear the mothers comforting their new- born babies and she felt an aching in her heart which would not leave. She was determined that she was going home tomorrow. The thought of leaving the hospital without her long- awaited baby generated silent tears. Her heart and soul formed a reconnaissance party, determined to find her little baby wherever she was. She had to have an operation to remove the placenta after her baby had been born, as the midwife had guiltily admitted that she had pulled the embryonic cord away from the placenta. Her mind steered her to the only thing which could take her pain away. She began to think of the fish and chip shop and her husband coping on his own with the business and their 13 year old son. Dori had grown used to taking care of the two men in her life on her own. She easily slipped back into her old mind- set: taking responsibility for looking after other people’s happiness. She asked herself whether she deserved to be happy. After all, everyone else had their baby with them. She must have done something wrong to deserve such pain.

‘You must not travel for at least two weeks’, the doctor informed Dori when she demanded to be discharged. Her heart dropped further than she thought possible.
‘Does that mean I can’t travel to London to see my baby?’
‘Yes, I am afraid so,’ the Doctor agreed coldly.

‘The operation went as well as could be expected,’ Professor Wilks told to Norman Smith on the phone. ‘Christina Elizabeth is holding her own, she is a little fighter. She will need to stay here at GOSH for a few more weeks, but you can come up to see her whenever you wish.’

Norman swallowed hard: ‘Professor, we want Christina to have the best possible care. We can sell our business to pay for anything she might need.’

‘There is no need to do that Mr Smith. She won’t get any better care than here with us. Please try not to worry. She has a little while to go before she has her second, major operation.’

Another bolt from the blue. ‘She has to have more operations?’

‘Oh yes, I am afraid so.’

Two weeks later mum and dad parked the car near St James’s Park and followed signs to Great Ormond Street hospital. Mum’s heart was beating so fast she thought she was going to faint. It was the first time she had seen Christina since the day she was born. ‘I hadn’t thought of the name ‘Christina’, she had said what seemed like over a thousand times to Norman. ‘I really wanted Katherine with a ‘K’ but I do like Christina. At least they got the middle name right, after her great Grandmother.’

Norman sighed. ‘I know, I am so sorry for not remembering Dori. I like the name Christina too; it will be shortened though no doubt.’

Dori didn’t reply. She had gone very quiet as they entered the Hospital. They made their way to reception. ‘We are here to see our baby, Christina Elizabeth Smith.’

The nurse smiled and turned towards them. ‘Have you travelled far?’ she enquired.

‘From Bournemouth,’ Dori replied eagerly. ‘Where is she?’

‘Christina is in ward 4AB. Upstairs, to the right and down the corridor. You will see it signposted’.

The pair scuttled off in pursuit of 4AB. They felt as though they were walking through a thick fog, unable to speak, afraid to breathe. When they arrived at the ward a staff nurse ushered them into a consulting room …

Norman and Dori were led down the warm, quiet corridor and stationed outside the window which over-looked a couple of rows of babies in incubators. Norman had no way of knowing which baby girl was his. He looked up for Dori who was talking to the nurse, walking slowly towards him down the corridor.

He stared at the fragile little bundles of life. One of the babies turned and looked his way. Norman thought he could make out a smile. The same nurse who had been speaking to them before appeared behind the glass. ‘I bet that one is mine, the one who just turned?’ Norman asked.

The nurse nodded. ‘Yes, that is yours. She seems to know you without even meeting you!’

The nurse was amazed. Dori smiled. The baby blinked. Norman nodded. ‘Just as I knew her ...’

When a human feels unsafe their hormonal chemistry changes and they produce more adrenaline and cortisol, which can make the body freeze with fear, creating on-going feelings of fear and anxiety. Even as a new born I believe I would have sensed fear and anxiety because I had been parted from my mother. In addition my body would have undergone severe stress being pumped with the anaesthetic and antibiotics necessary to get me through the lifesaving operation. Without the warmth and security of my mother and my family, I felt abandonment and fear deep in my psyche. This would not to be the last time I was to be parted from my mother for a long period of time.

18 months later I was back at Great Ormond Street. I had to have a second operation to close the colostomy which is known as a ‘Pull Through’. The professor hoped my bowel would function as normally as possible after this. My mother remembers well how different Great Ormond Street was then in 1970 to how it is now. In 1970 parents were not allowed to stay with their children in the hospital. So I was left alone again for long periods of time. Mum had to find lodgings nearby in London when she came on her own.

One day I remember being really stressed about this new operation. I managed somehow to get back to my lodgings which were a bus and a tube-ride away from the hospital. I went to get myself a glass of water from the sink in my room. I was dizzy as I hadn’t eaten all day. As I looked at my reflection in the mirror I somehow dropped the glass into the sink. I don’t know what I noticed first, the broken glass or the cracked sink. The landlady heard and there was another crash as she breezed into the room and told me I had to pay for the broken sink there and then! I didn’t have the money on me and I didn’t have enough money in the bank. I left in a panic and saw my Uncle Alec. I was so grateful for him taking me in and paying the bill.

The result of mum having an unsupportive relationship with the hospital, having to deal with a baby with a disability, handling recalcitrant landladies, and coping with managing a business all took their toll.  Mum came to see me as often as she could at Great Ormond Street, but she couldn’t afford to stay in lodgings for the whole of my stay in hospital. She had no choice other than to leave me on my own for a week. When I was at home, mum would attend the colostomy wound diligently. At times she would stay awake all night so that she could wipe away any acid which spilled over from the colostomy and landed on my skin, preventing it from eating away at my skin layers, making me sore and in pain. Mum remembers witnessing my skin growing again over my wound as she tended to it.  Of course the nurses at the hospital were unable to give me their undivided attention like my mother would. When she came back to the hospital after leaving me there for a week, she could see that my wound was sore and the skin around the wound was red raw. It was evident to her how much discomfort and pain I was in and it upset her greatly. It was clear that the nurses had not been vigilant in keeping the acids from eating away at my skin. When mum asked the staff nurse why I had been allowed to get into this state while at home she had spent so much time healing the skin, the nurse was very defensive. ‘Now you can say you are better than Great Ormond Street’. It was on this occasion that my Father remembers how I reacted when I saw him approaching my cot, with my mother. I was sitting upright at the time and as they got nearer to me I looked at them and turned my back on them. My dad believes that I was punishing them for abandoning me yet again. Dad felt so guilty and so sad for me that he decided he would lift me up into his arms and carry me around, holding me tight; telling me how much he loved me. Thankfully two year olds forgive very quickly!

I was very lucky to have parents who would care for my every need as I grew older. However, as with many parents who nearly lose their child they wanted to keep me close so that they could look after me, make me happy and fix things when life was difficult for me. This was a remarkable gift to me in one way but not so in another. I felt safe only when I was with my parents or at home. The world became a scary place for me as I did not know how to solve the emotional or physical problems I encountered. My mother was born to a rather Victorian family and from the age of 7 she was told that she should take care of her mother and her family as my grandmother suffered from depression and could not take care of her three children and husband. So my mother’s family rule book stood her in good stead for the future as it made her a capable, strong-willed and caring woman, matured way beyond her years. In her early married life she was able to tend to her husband who had a lung removed due to contracting tuberculosis, and then later to look after her disabled child. However, along with these strengths came weaknesses. The inability to let go of control, to allow herself or others to feel extreme emotions, to make sure that everyone else’s happiness came before her own. I didn’t learn about self-reliance, or how to manage my emotions. I looked to my mother to solve every crisis in my life up to my 30’s which was when I started working on developing my inner self in earnest.

In my teenage years I tried to rebel against my condition by going out to places, never on my own, but always with someone, like a friend who knew that I might have to run to the loo or go home when I needed to. As an adult I had to face going to work. Needless to say my jobs didn’t last very long as I felt that I let my employers down by having to take time off work due to my incontinence. I did not tell my employers about my bowel condition. I felt that I should be able to cope with the situation and I felt terribly embarrassed about having to explain to a professional person about something he/she would have no possible understanding of. I also had this feeling that I should be ‘normal’ and I was in denial that I had a disability. Only those people whom I trusted and loved knew about my condition and even then I would wait until I was certain that they would not reject me for knowing who I really was.

Going out to work every day was an emotional marathon. I would wake up at least an hour and half earlier than needed. Of course the everyday anxieties that most people feel when they think about getting to work hit me just the same as everyone else. However, these thoughts would bring an instant reaction to my bowel. So I needed extra time to allow for this. I would not be able to eat anything in the morning due to my anxiety but also so that it didn’t over load my bowel, making it over-active. My most fearful thought would be that I would be unable to get to work on time if I had an accident on the way and either had to turn around or go to work and then have to deal with things there. I would be late and I would have to explain the reason. This meant that I would endeavour to travel to work and be there about 30 to 45 minutes early, ‘just in case’. Other work colleagues would look at me as if I was some sort of over enthusiastic freak, always being the first to arrive at work. If only they knew the truth.

This journey to work would quite literally drain me emotionally and physically as my state of arousal was constantly on high alert. So going out has been an issue for me since birth. I believe that what kept me driving forward was the sheer will-power to do the things I wanted to do. I felt as though I was in a raging battle every day with my stomach and I was determined to win. The fact is that I was actually fighting an internal battle. I did not really trust my ability to cope.  I also didn’t trust that other people would be sympathetic to my disability and would not make allowances for me. As a perfectionist I believed that no one would stand for anything but perfection. I wasn’t able to share openly how life really was for me, mainly because I couldn’t accept it myself. This is something that I have learned only recently and it has been my most valuable life lesson.

Introduction

Introduction: Life pointed at me

I wasn’t even sure I should go that day. I had decided that there would be nothing that could be done for me. I sat nervously in the Conologist’s waiting room at Poole General Hospital at 9.00am on an Autumn Monday morning. I hadn’t spoken to a specialist about my unique bowel condition and the incontinence I have endured, since I was last seen as an outpatient at Great Ormond Street Hospital, London, when I was ten years old. That was over thirty five years ago.

The lovely, cheery, bouncy nurse called my name and I duly followed her through to an anti-room adjourning the room where the Consultant lay in wait with the door to his empire firmly closed.

‘Please take a seat’. The nurse gestured for me to sit in the corner next to a freshly prepared NHS starched white bed, obviously prepared for a victim to have their bottom examined. I swallowed hard. That won’t be me today! I would make sure of it. Today I wanted to speak to someone who could give me answers, tell me what my options were. Advise me how I could make my life more manageable and reassure me that I was doing all the right things. However, life often gives you want you want in a way you hadn’t envisaged. Always though life points at you, laughs with you and makes you ultimately responsible for choosing our own path forward.

The nurse turned to me and handed me a white form and a brown envelope.

‘Would you mind filling this questionnaire in after you have seen the Consultant please? Then hand it over to reception.’

‘Yes, of course I will’. I smiled willingly.

The nurse left me with the questionnaire and hurried off through the closed door. I heard her say to the Consultant, ‘Mrs Hunt is ready now boss!’ Humour and sarcasm mixed in for good measure. I liked that though, if she can tease this man he must be flexible and approachable I thought. Meanwhile, I sat in the chair clutching the white form and hoping to God that the Consultant wouldn’t keep me long, as my bowel was doing so well, but I couldn’t hold on forever and if I got more nervous I knew I couldn’t sit there I would have to dash off to the nearest toilet. I always assume that they won’t be close enough.

To refocus my thoughts away from my uncomfortable difficulty I started to read the questions on the sheet. The title of the questionnaire was ‘St Mark’s Incontinence Score’. It was obviously a questionnaire to gage how my incontinence was affecting my life. For each question I was asked to indicate how much of the time the issue was a concern for me due to accidental bowel leakage.

1 = Most of the time   2= Some of the time  3= A little of the time   4= None of the time

As I read down the list of the 28 or so questions I started to smile.

1a. I am afraid to go out……

The smile turned into a snigger

1.b. I avoid visiting friends

The snigger turned inwards to a sarcastic laugh

1.c. I avoid staying overnight away from home

At that point anger spilt over. The questions I read were so relevant to my life but no one had ever asked me about them before. I had been born with a hidden syndrome which had affected me every waking and sleeping moment, but I had never had any help. I hadn’t even fully understood I had coped with life up until the point of reading these questions. The questions made me realise how much I had had to deal with, and how I had found my own way of turning these situations and feelings around in order not only to survive but to thrive. My anger came from the feeling that the medical world had actually abandoned me.

In 1968 the Paediatric specialists had only just perfected the operation to save my life. If I had been born 10 years earlier I would not have survived. So it was no wonder they didn’t know how to help or support me or my long-suffering parents, or advise us what to expect. About 20 years ago the medical world did begin to understand this condition, and the other potential physical abnormalities that were hidden, waiting to be found. By then though, I was well out of the Great Ormond Street radar, being a fully-fledged adult. An adult who could survive and adapt to situations rather than making a fuss and asking for help from the NHS.

I have had to live with incontinence all of my life due to being born with Imperfornate Anus (IA for short) and I have had to find my own way of dealing with embarrassment, bullying and anxiety. It was discovered that I had one kidney, two wombs, two vaginas, absent coccyx, extra clavicle rib, and a tethered spinal cord. Through this story I hope to bring awareness of the emotional and physical difficulties people with incontinence have on a day to day basis. I believe that incontinence disabilities are akin to many others hidden disabilities and I would like to think that my personal story will help and inspire people who suffer from any form of disability, hidden or otherwise, so they can stop the internal fight trying to be normal, make peace with their differences, and tap into who they really are both physically and spiritually.

My physical and emotional issues have mostly been caused because I was born with the IA. However other people with IA can be born with more complicated syndromes and associations. I consider myself as one of the fortunate people. As an Emotional Therapist and CBT therapist I have travelled with people through many different emotional traumas and situations. Those who were successful at making the changes necessary to heal themselves needed to accept their situations in their entirety and end the power struggle between what they wanted and what actually is. This power struggle is not unique to emotional upset but to every part of our lives. When we are faced with life struggles and physical disability we tend immediately to become fearful and angry. Our anger comes from feeling like a ‘victim’. A victim of circumstance: of our bodies, mind, society, and life! My own personal power struggle with my bowel has resulted in me struggling with extreme anxiety, embarrassment and low self-esteem most of my life.  I know that a person does not have to have a physical disability in order feel this way. It is a natural state of being and it is not an ideal way to live but we can live with it rather than fight against it. I am not suggesting that we all ‘give in’ to our situations and weaknesses, but rather look at the painful, dark parts of our lives and release the need to change or control that part of us, make room for it as it were and learn to accept the situation is as it is for now. By releasing that need to control or change it we learn to trust that we can actually cope and live with this feeling/situation. In essence we are learning to trust ourselves and the organic process of life itself. In my experience, those people who are ready to make changes to their lives have no more energy left to invest in their internal power struggle. The way we think about our difficulties does not work with us but against us. While we struggle instead of shaking hands with our internal issues and the only way out of this situation is to go through it, trusting in something other than ourselves, thus releasing control, accepting and then looking at our choices.

None of our struggles are unique, but the way that we deal with them is. What works for one person may not work for another. When you are faced with fear, anger and panic you become locked into a sort of trance state which makes you lose all connection with everyone and everything you ever trusted: doctors, friends, family, yourself and with any deity or spiritual connection to.

Back to the questions in hand……..

I worry about not being able to get to the toilet in time…..

Tears welled up in place of the anger. Finally, someone will know about my emotional and physical difficulties, someone will be able to give me some support. There was a knock at the door and in walked the Consultant. A tall kindly man shook my hand with gentleness and respect.

‘Mrs Hunt, it is so good to meet you. Thank you so much for sending me the medical notes from Great Ormond Street and for your letter explaining what is happening for you right now. First, I would like to say what a brave and courageous lady you are. It is so apparent that life has dealt you a bad hand from birth, but you have obviously have been able to overcome these difficulties and turn them into a positive rather than letting them overwhelm you and drag you down.’

His heart-felt words shocked me to the core! I think I must have stared at him like a deer caught in the headlights of an oncoming car. I never thought a medical person would ever think of me in this way let alone talk to me in such a caring and empathetic manner. In the past I have seen Gynaecologists, Neurologists, Cardiologists, GPs, Chiropractors but no one had ever spoken to me as if I actually matter, or that they had an ounce of understanding of my condition and what I have been through before. This gentleman was quite extraordinary!

‘Thank you,’ was all I could say to him, still stunned.

‘I am not sure what I can do for you though. You are so unique we are very much in the dark about your condition.’ His expression took on a more serious tone. ‘I was hoping that you might be eligible for a device to be fitted into your rectum which is like a magnetic ring which would work like an anus with muscles, which you have little or none of. However, if you were to have this ring fitted you would not be able to have another MRI scan, which you say you might need in the future to see if your spinal cord had re-tethered or if there was more tethering. We need to look more closely to your internal muscle structure to see if this is possible. When your bowel makes your life unbearable - or more unbearable that you can’t stand it anymore - we might have to fit you with a colostomy, but I am not threating you with that, it is just another option down the line, when you are much older.’

‘In the dark’, or a ‘dark horse’ is something I have been told time and time again about my genetic condition. It didn’t surprise me to hear it once again.

‘Well I don’t’ have the answers after 45 years, so I didn’t expect magic solutions. I consoled him. ‘I know I can cope with many things. If you had given me this questionnaire when I was 10, 20 or even when I was 30 years old I think you may have been able to help me in more ways than just offering me an operation. However, I believe I have found a way to overcome most if not all of the issues underlying these questions.’

The consultant smiled knowingly. ‘You are really a brave lady, and you’ve been through so much. You have such resilience.’ I took this opportunity to tell him how I really felt. I shook his hand firmly and warmly.

‘Thank you so much for your kind words. You do not know what they mean to me. I feel I am not alone anymore with all this.’

His smile was warm and generous and after confirming that I would be getting an appointment for a further test and that we would meet again he disappeared behind the door once more, now more a haven of light than a secret empire!

I floated out to the waiting room where my lovely husband eagerly greeted me with concern in his eyes.

Instead of answering the questionnaire in the hospital I asked if I could take it home so that I could study it in earnest. I began to realise that I could not just tick one box to answer the questions in full. How can a tick represent my life experiences? I became aware of exactly how much anxiety, stress and victimisation I have endured in my life time. More importantly, I realised that I have managed these situations and mostly overcome them. On close inspection I began to realise that not only do the questions apply just to me and my disability, but they can also apply to many other disabilities and even to anyone with emotional issues. Thanks to my years of working as a counsellor I realised that the questions being asked could relate to any physical disability or mental/emotional health issue, with a little tweaking of the odd word or two.  It became clear to me that by answering the questions in such a detailed way it might be of interest to other people who have, or who care for, people with incontinence issues: people who are struggling to cope with changes to their physical and emotional lives. I also hope that the parents of children who are born with physical difficulties may find the answers interesting and discover an insight as to what it is like to accept and manage their physical difficulties and ultimately support their children’s emotional growth.

Each chapter deals with a different question. When addressing each question, I relate back to how the particular issue has affected me throughout my life: I have also compiled the psychological tools that I have gleaned from workshops, courses, reading books and working with clients, but mainly from my own spiritual development and inner knowing. Not all the tools I have used will connect with you and your particular issue. We all hide behind the smile but from what I have experienced as a counsellor everyone who has ever struggled with emotional issues (and who do you know that hasn’t?) knows what it is like to feel embarrassed, fearful, angry and shameful. The degree of feeling might be different from one individual to another. We are not alone with our struggles but if you believe no one will ever understand you then you do stand alone, a victim whom no one can rescue. Your story counts and it is one which is echoed across the world, because we can all relate to it to some degree. We are not our bodies; we are not what we have allowed life to make us!

I was born in 1968 at the time the doctors could only see that there was no opening to the bowel, and that I had only one kidney. The full spectrum of my abnormalities was not diagnosed until later in life. I have looked for a label for my disabilities since I reached the age of 23. Mum and Dad did not seem to worry about ‘what’ condition I had I think they were more interested in me living a ‘normal’ life as much as possible. It is also possible that as I had been discharged from Great Ormond Street as they thought nothing more could be done for me. When I asked the Geneticist to investigate my condition in the 1990’s I was told that I had Hand Foot Uterus Syndrome which would explain my two wombs, vaginas, and finger like thumbs. However, they couldn’t find the chromosome responsible for this condition within me, so I was told that I was unique. In fact, there was no one with the same abnormalities as me in the whole of Europe.

I was strangely satisfied with this outcome. I began to think of myself as an ‘alien’ and that my parents were right all along, that I was a ‘special’ person. With the coming off Facebook I discovered, at 40, that there were other people in the world who suffered from part of my condition at least! It is through the IA Facebook community that I was introduced to something called the VACTERL association. It is a disorder that affects many body systems. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. As far as I was concerned I certainly ticked at least four of these criteria. I also befriended an amazing lady called Sammie Hunt who has been classified as having VACTERL and who was born with even more severe abnormalities than me. However, after a recent visit to the Geneticist where I thought I would finally be classified as having VACTERL and finding a label, home and community where I belong, they have decided that I do not sit comfortably into this Association either. As I write, I am being tested for Townes Block Syndrome which they believe could describe me better. I have to point out that VACTERL is not hereditary. However, Townes Block Syndrome is and it may have consequences for my daughter and my nieces. Only 1 in 200,000 are born with Townes Block and there only 200 confirmed cases to date. I don’t care now about having a label. The label is for the medical world, and to make prognoses about my physical future more accurate. A label does not say who I really am, for I am not the sum of my body. But I do care about the genetics of my condition and whether it can be passed down to other generations.

In 1968 and since, all medical journals and professionals state that, as a child, depending on the severity of your condition, once you have had all your operations, you should be able to achieve a 'normal life' without  further consultation. Unfortunately, this is not the reality. What I want to explore in this book is the real story of living with this condition and I want to try to influence and change the medical opinions and those of society in general, through my own  real life experiences.