|INSIDE OUT – Coming to terms with Disability
AUTOBIOGRAPHY of Jane Mincher “It stinks in here”, says young JP with no sign of malice in his voice, just stating a fact. These are words I have heard many times before in my life, especially in my early childhood years. The difference then, was that children would tease me, or my family would say “you stink, go and change,” and I would take offence. “I know,” I reply tentatively whilst carefully studying JP’s deceptively innocent looking face. It is 6am and I am sitting on my bed – JP on his duvet, which is spread out on the floor in my room. I retrieved him a few minutes before from the dormitory-room where he had become disruptive and started waking the other boys up by making abusive remarks and doing handstands in his bunk bed. “You should go to the toilet if you’re going to poep”, this 11 year old tells me – his 31 year old teacher. “I can’t help it JP. Just like God never gave me a thumb on my left hand, He didn’t give me the ability to control my farts” I tell him candidly. We are on a three-day school camp and JP had wet his bed that night – hence his early wakeup and subsequent disruptive behaviour. “You sometimes wet your bed and you can’t help it,” I continue, giving him an example to which he can relate. After a moments sombre reflection he admits, “Sometimes I can”.
This child, who has learned the harsh realities of life at such an early age and often regresses to baby talk, now converses with me with the wisdom and respect of a wise old sage. “Why didn’t God give you a thumb or control over your farts?” “I don’t know JP!” There is a golden silence between us. The kind of silence that forges a bond between two people that is far stronger than can ever be created through words alone – the kind of silence and bond that few people ever create in their lives, even with loved ones. The kind of silence that comes only from moments of truth-telling like this one. “Do you pray at night?” I ask him. “Yes” comes his reply. “When you pray again, will you ask God “Why” for me?” “Yes” comes his response, and he rests his weary head on the pillow and goes to sleep for a little while longer.
JP is the first person I have told about my incontinence in such a candid and truthful way. It is the first time I have declared it without the customary feelings of guilt, shame and self-condemnation. Feelings that were fuelled by a lifelong truce of silence about the physical condition I was born with.
Reviewing my Medical Records
File No 5842. A 2cm thick, mustard coloured soft-folder with my paediatrician’s name in bold green print on the front cover. Patient’s Name: Jane Mincher. Date of Birth: 19.12.1968. Date first seen: 1976. Problems/Diagnosis: Complex High ano-rectal anomaly with associated anomalies (C.R.A.V.A.T. Syndrome). Cloaca-type anomaly.
In 1990, I decided to retrieve my medical file from storage before it was destroyed, as is customary after the required number of years of archiving. My mother read in the newspaper several years before that my paediatrician had obtained a post overseas and had immigrated. It was a time in my life when I very tentatively started to open the Pandora’s Box of my medical life history.
The file is filled records of numerous operations, x-rays of my spine, lab reports, letters of explanation for leave of absence from school and cardiologist reports. Sifting through the various reports, I find myself becoming frustrated by my lack of ability to translate the medical terminology into layman’s terms. It is a file I will go through time and time again, slowly digesting the details of my physical condition, and at the same time, coming to terms with the psychological and emotional impact that it has had on me.
Summary from Children’s Hospital records:
This child was born on 19.12.1968 by Caesarean section. The child was noticed to have the following abnormalities.
1. An odd shaped head with prominence of the frontal lobes on the right and widely patent anterior and posterior fontanelles.
2. There was marked pigeon deformity of the chest, the ears were noted to be a little low placed.
3. The cardio-vascular system was abnormal with grade 4 systolic murmur audible over the precordium
4. The child was noticed to have nasal obstruction and inspiratory stridor.
5. The child was also noticed to have an absent thumb on the left hand with marked deviation and a cloacal deformity.
I was first operated on just 10 days after birth, on the 29th of December 1968 when a colostomy was performed because no anal opening was present at birth. On the 6th May 1969 I was transferred to Children’s Hospital for subsequent treatment, weighing 5lb. 3oz. Medical investigations revealed that I had a double renal collecting system on the right side and a single one on the left side. Skeletal x-rays confirmed what was obvious, that I had only 4 digits (fingers) on my left hand. Cervical spine showed the presence of bilaterally incompletely descended scapulae with omo vertible bones present bilaterally. Osification appeared retarded on the skull x-ray. The chest x-ray revealed a cardio-megaly. Chromosome analysis revealed a Nodal number 46 karyo type 46xx chromosomes. A high percentage of breaks were noted particularly in the A group. I was admitted on two more occasions to hospital, in June and July, of the same year with gastro-enteritis. On the 7th October 1969 I was admitted and prepared for surgery. On the 27th of October a sacro-abdominal pull-through operation was performed to create a “normal” anal opening, and on the 17th of December, 2 days before my 1st birthday the colostomy was closed.
The diagnosis given in my medical records is C.R.A.V.A.T. Syndrome. So far, I have been unable to find out exactly what this diagnosis is or what it means. However, in December of 1995, an article appeared in the Fair Lady magazine, “The story of Ian” (van der Merwe). My mother showed me this article and it sounded exactly like Ian had pretty much what I had. And so since then I have considered my diagnosis to be that of VATER Syndrome (note that most of the letters in CRAVAT and VATER correspond, because linked to Vater, are the Cardiovascular problems).
I was fortunate enough to be born into a very loving family. Dad came from humble beginnings, being the second eldest of a family of 7 boys, who no doubt taunted the residents of Benoni with their boyish pranks. Mom was the older of two girls who moved, in her early adult life, from the small town of White River to work as a draughts-woman for AECI in Johannesburg. My parents met on a blind date, and were engaged and married within a year of meeting. With little more than a few pennies to rub together, they moved to the home, which I was to know right throughout my childhood, when I was 1 year old. I was the second to be born, 2 years and 2 months after my brother Craig, who was to become fiercely protective of his little sister, and remains so until this day.
Shortly after my birth, whilst I was still in hospital, my mother received a call at home from the physician, who suggested to her that her new born baby would be brain damaged, and that she should look into placing me in a home or institution. My parents didn’t take this news too well, but nevertheless investigated a few options. What they saw was more than they could bear, and they decided that no matter what the consequences, no child of theirs was going to be institutionalised. Some time later, an intern in the hospital told my mother that there was nothing wrong with her daughter’s brain. “She watches everything that goes on here – just look at her eyes”.
My prognosis for longevity of life was not good, and after seeking medical advice on the odds of having another child born with similar problems and much deliberation, my parents decided to try for a third child. Bryan was born a healthy and wholesome little boy on the 23rd of March 1970. Bryan was to become my playmate and confidant, Craig my protector.
Few children remember the nappy changing period of their childhood because they’re out of nappies by the time their early experiences are carved into their memories. I have memories of wearing nappies at bedtime, long after I could walk. I also remember playing with the children of my parents friends, and trying to use a pencil sharpener for the first time and not being able to hold it in my left hand. One of the other children sharpened the pencil for me – my first conscious memory of my left hand being inadequate.
I went to a mainstream school – Bramley Primary. My first day of school is clearly etched into the crevices of my mind. I am feeling very nervous and shy, a demeanour that continued throughout my primary school years. I am holding my mother’s hand, and the teacher, a very kind woman with red hair shows me where the toilet was in relation to the class – out the door to the left, and up a couple of steps. She tells me that I don’t have to ask permission to go, I can just get up and go whenever I need the toilet. I sense that I am being granted a special privilege, and so this is my first experience of being different from other children.
I loved learning, and I can still remember the smell of led pencil and fresh new paper as I made my first squiggles of writing. Making friends came less naturally to me than the desire to learn. My schooling was interrupted for a month when I was in Grade 2, by the need for another operation. On the 13th of May 1976, ano-plasty and vulvo-plasty were performed in an attempt to give me more muscle control over my bowels.
I returned to school, having missed quite a bit of the basics, especially the start of my times tables, and mom spent many hours helping me with my homework so that I could catch up. The operation however, never achieved the desired result of giving me continence, and more problematic than my obvious physical disability of no thumb on my left hand, was the less socially desirable consequences of incontinence. I was teased constantly by other children and had very few friends in primary school. A big part of the alienation also came from my exclusion from most sports activities, mainly because of my incontinence and partly because of my heart condition. But the excuse I always gave to my peers was my heart condition. And so I never swam with the other children, nor did I go on school camps. This social isolation was awful, and I remember my primary school years as sad, depressing times. I was an abnormal child living in a so-called normal society – part of a mainstream school where I was the only one who was physically different. But that in itself wasn’t the problem. What was more of a problem was that no one ever discussed my difference openly, or encouraged me to discuss it. No one ever asked me what it was like to not have a thumb on my left hand, or at least not until I was in my early 20’s. Nor did anyone ever openly discuss my incontinence – not even my brothers knew about it. One teacher actually made me sit outside of the class until my mother fetched me because she couldn’t tolerate the smell. And so because the only time children were sent outside was when they were naughty, I made the association of being a bad girl and took the blame onto myself for how I was. I was branded, the child that stank, that shat in her pants.
High school was a chance to start afresh. Only one girl from primary school transferred across to Maryvale Convent. The classes were small, there were only girls, and my past was in the past. I started to flourish, to shine. I was happy for the first time in my life. I had some very good friends, I was achieving very good marks, and in some subjects I was the top of the class. I played hockey really well and I was known as the “tornado” for my powerful hits from the 15yard line. I participated in the swimming lessons – making sure I changed for swimming away from the other girls – but at least I got to be part of the clan. My confidence got a real big boost.
I was older, and so I was better able to manage my incontinence, mostly by avoiding foods which gave me flatulence or loose stool. But accidents happen and stomach bugs tend to go around schools like wild fire. I think I was in Standard 7 when it happened. It was during a PT lesson – we were out on the sports field practising various athletic activities. Suddenly I knew I had to get to a toilet fast. I told the teacher I wasn’t feeling well and asked permission to leave the field. I walked as fast as I could to the toilet, all the time realising that if I ran the pooh in my pants would start seeping down my legs. I made my way precariously across the field, up the first flight of stairs, my stomach now starting to explode. In the last 100m before the toilet as I climbed the top flight of stairs, my bowels turned to liquid and I left a trail of smelly runny pooh on the stairs. The rest of the day is almost like a blur, it’s as if the trauma and embarrassment were so much that I have erased it from my memory. I don’t know how I got from the toilet to the quadrangle below to wait for my mother to fetch me. I don’t know who found me in the toilet, or where I got clean panties from to wear until I got home. I don’t know who cleaned up the mess. All I remember was the overbearing feeling of embarrassment and all I wanted to do was die. I never wanted to go back to that school again, I couldn’t bear the thought of facing everyone after such a humiliating experience. It was as if all the unhappiness, all the torture of my primary school years, came crashing down on my head in one foul swoop.
I did go back to school the next day. I don’t know what my mother said or did to convince me to return, but I did. No one said a thing to me. No teacher no child. It was as if it had never happened. But inside of me, something had changed. It was like everyone now knew the secret that I had so carefully guarded. The secret that I shat in my pants, that I was fundamentally flawed, that I was a social outcast and would be rejected yet again.
During my high school years I had another two operations. In 1983 another anoplasty and vulvoplasty operation was performed in 1985 to improve the anal opening and to provide for an open vagina. In 1985, after suffering excruciating period pains, I was admited for a laparotomy and excision of unterine remnants. Essentially, investigations revealed that I had a primitive or underdeveloped ovaries and uterus. I will not be able to have children of my own, but will be able to lead a normal and active sex life.
The path to self-discovery and self-acceptance
As you can imagine, my sense of self was quite distorted. All I saw myself to be, was a deformed person without a thumb and who had to deal with incontinence issues on a daily basis. Having never had feedback from other people on how they saw me, I didn’t know that many people never even noticed that I don’t have a thumb on my hand for several months. Almost no one knew that I have to deal with incontinence. I wasn’t seeing the 85% of me that was working, that was healthy and whole. My focus was on the DIS of “dis-ability” and I was in dire need of a shift towards the ABILITY part of the word.
I began to talk about and deal with the emotional and psychological aspects of being physically different when I went to Rhodes University to do my honours degree in psychology. Through various practical counselling courses, I started to open up, to lift the veil on a lifetime of secrecy and social isolation. The Life Line Counselling course was the next step, several years later. This was followed by my involvement in the Life Training Program, which has really given me practical processes and a supportive community, in which to handle my issues around coming to terms with disability. My contact with Lynn and Ian (who started the TEF and Vater Syndrome Association and support group) has also been of tremendous value to me. Talking to them, and to other parents of children with Vater Syndrome, has been a huge part of my journey of self-discovery and self-acceptance. The exploration of this process of self-discovery and acceptance, will be the primary focus of an autobiography, which I am in the process of writing.
Intimate Relationships with Men
These have been few and far between. I used to think it was because no man would ever choose to live with someone who has all of the problems that I have been born with. I now know that this is not true. My lack of experience in intimate sexual relationships with men, is more because of my own fears and non-acceptance of my body than it is because of theirs. I reject myself by not even beginning to entertain the option of a relationship, so that I don’t have to face potential rejection by someone else. I play safe, I isolate myself.
Denial is another big stumbling block for me – even bigger than the fear of rejection. By not fully accepting the reality of my body, I live in pretence that I am okay and “normal”. This behaviour pattern has cost me a great deal. As long as I continue to deny the reality and not accept my body as it really is, I don’t give myself the opportunity to make the changes that can be made to enable me to participate more fully in life. Medical science has advanced tremendously in the 31 years since I was born, and there are things that could probably be done to improve my situation. I am now, starting to investigate those options and to give myself a fair chance of having an intimate relationship.
My current status quo
I currently run my own business, teaching children with special needs, particularly children with Autism. I believe that I have something unique to offer, having had the experience of being different from what is considered to be the “norm”.
I live in Llandudno in Cape Town, South Africa, in a beautiful house overlooking the ocean, which I share with two other people. Last year I backpacked around South America for 4 months, and then lived and taught in the UK for almost 6 months, before travelling to the USA to attend a Life Training Leadeship Conference and for a one month holiday.
I plan to write and publish a book on coming to terms with disability, my purpose being to support others with Vater Syndrome, or any other physical or mental disability, by sharing my life experience and my own psychological and emotional journey.
I am quite willing to chat to parents or children with Vater Syndrome, either telephonically or via email. Lynn Grant (Ian van der Merwe’s mother) is the co-ordinator for the South African Vater Association, and I have recently been in touch with her again. When she returns from her holiday, we will get together. I am looking forward to meeting Ian again, who is now a young man in his mid-teens. He apparently had a spinal fusion operation last year, but I am told he is doing really well.
Cell 082 873-5481 Tel. 27-21-790-3228
P.O. Box 26953, Hout Bay, 7872, South Africa.
Jane recently got married. Congratulations!