Thalidomide Group Australia

  Looking for Justice 

 




     Margaret


      ~ A Mother's Thoughts






        ".... how can they get away with what they have done to us?"








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                                          Mary - Thoughts of Today

                                                             "We remember ... we pay ... we acknowledge  ... we feel ...  we ask!" 


Today, 30 June - We in Australia, join with our fellow UK Thalidomiders in remembering the disastrous legacy of Thalidomide.


Today - We remember those nameless babes who died in utero.


Today - We remember the disproportionate number of Thalidomiders who have died prematurely as adults.


Today - We pay homage to our parents and siblings who themselves, were also victims in the world's greatest medical disaster - Thalidomide.


Today - We acknowledge in each other, the resilience through ongoing struggles - we as people living with debilitating Thalidomide disabilities, continue to endure.


Today - We feel the pain of those whose mother's medical records have been 'lost', thus adding insult to their injuries and denying recognition that they too, were victims of Thalidomide.


Today - We ask for justice from worldwide governments to support Thalidomiders who are facing ongoing and increased deterioration, as a direct result of Thalidomide.


Today - We ask the World to heed the man-made errors of the past and, to vow never to forget those who have lived with the Thalidomide legacy for 55+ years - with a totally avoidable outcome that appropriate medical testing could/should have prevented.

 


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         Beryl ~ A Mother's Love


Not a day goes by where I don’t feel the guilt and the pain of what happened to our daughter.

 

After her birth, with each bad or sad thing that happened to me in my life …

I wondered if I was being punished for taking those tablets?   


I am 91 years old now …  and I still wonder!

 

I’ve loved her from the moment I saw her, and I’m so very, very proud of who she is today”. 

                                                                                                                                                                                             X



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                         Lisa My Thoughts

                                                                                                          "It has broken my heart"


Many times I have been asked “how has Thalidomide affected my life?”   The answer, in all its complexity, is simple.   It has affected me completely.    Its impact to my life fills my waking hours, and often seeps into my sleeping ones.   It accompanies me where ever I go.      There is no escaping it, or even temporarily avoiding it, and no pretending it doesn’t exist.    It is extremely visible, it is ugly, and many times it has made others recoil in distaste.    It has often entered the room before I have, and can linger long after I have gone.     Like a weighted cloak, I wear it and it constricts my life.   It disables my ability to function without pain, embarrassment, fear or anger.    It leaves me exhausted.    It has broken my heart.   It has even left me wondering ‘why bother?’   

 

Thalidomide entered into my life in my mother’s first trimester of pregnancy.   In fact, news of the Thalidomide disaster came to my parent’s just months before I was born.    The anguish this newly married couple must have experienced waiting for my birth is unfathomable.     The pain and sorrow they carried with them ever since has been immeasurable.     It was through their determination that I live as normal a life as possible, that I learned the value of ‘fight’ and ‘independence’.    In my younger years, these qualities gave me the strength to survive and although my parents dreams were for me to be able to achieve anything I desired, the harsh reality was that so many of the doors to my opportunities in life, had already slammed shut.   


From a small child trying to hide behind my mother’s skirts to avoid the uncomfortable stares of others, through to a 54 year old woman today, (who is still exposed to unwanted stares and unwarranted comments), the journey has been difficult.    Thalidomide started stealing from me in early childhood.   Like a thief, it stole my ability to climb a tree, to catch a ball, to dress and toilet myself, to play a musical instrument, to skip rope, to swim, and to ride a bike.   As I grew older it stole my ability to play sport, to follow my passion of ballet, to attend school camps, to hold hands with boys, to keep up with class notes, to shave my legs, or to even brush my hair.   Every month I was house bound with my menstruation, and no one wanted to “date the chick with the short arms”.   Thalidomide dictated what I was able to do, and what I wasn’t able to do.   


As a young married woman, I was unable to cook, clean house, hang out washing, carry my baby, hold my husband, follow a career in medicine, grocery shop, volunteer at the school canteen, sew or knit.    Thalidomide severely limited any courses I could study, and continued stealing from me by taking away most employment opportunities.   Whether I wanted to follow medicine or be a sandwich maker, or a Police Officer, or a Coles cashier … Thalidomide disabled me.     


Today, at aged 54, Thalidomide has rendered me an old woman.    The simplest of tasks such as; washing dishes, getting dressed, cutting my roses, writing a letter, walking through the garden, picking up a dropped pencil, are all almost out of my reach now.   My back, neck, shoulder, arm, hand, hip, leg, foot, finger and toe pain, and headaches are constant.   My psychological well-being is exhausted.   My body has almost worn out, and my mind is being dragged into the downward spiral.   I am tired of the battle.   Thalidomide has stolen my body and is chasing my mind.   It has continually robbed me, hurt me, and hurt my loved ones.    It came into my life as an uninvited guest, and it has stayed a lifetime.    It is continually with me and it dictated much of how I am today.   It has severely limited the options of my life and has already decided my future.   

 

Ask me if I am angry?   In honesty … I wasn’t!   But I am now.   I tremble with the hatred and bitterness I feel for those that designed this drug, and also for those that allowed it to be marketed in our country.    I seethe at the lack of responsibility surrounding Thalidomide, and the fact that it made its way into my mother’s hands over 54 years ago is abhorrent and inexcusable.   I loath hearing of how much money Gruenthal makes each year as it continues in its successful business, yet has never paid me compensation for stealing so much of my life.   I am disgusted at the lack of support from my own government as they have allowed me to be unsupported all these years, and I am equally repulsed by them in allowing Gruenthal to still practice their business here in Australia.          

So when I am asked, “how has Thalidomide affected me?” I maintain my perspective that despite its complexity, the answer is simple.   It has affected me completely!    The reality is however, that even though I am at the epicentre of my experience, Thalidomide has also touched and affected anyone close to me.    My mother and father, my husband, my son and my daughter have also felt the devastation of Thalidomide.   How could they not?  They are an extension of me, as I am an extension of them.  Like the very worst of horror movies, Thalidomide causes pain and heartache and continually haunts the lives it has entered.    My future is bleak.    As my body continues to age, so will my arthritis, immobility, pain, fear, and my needs increase.    The fight and independence I was once so respectfully known for, are gone.    Gone but not forgotten.


How dare Thalidomide come into my life and affect me like this!




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                                  Suzanne... My Journey

                                                                                            "All I really wanted was to be normal"


The hardest thing for me was living with Thalidomide.   It not only affected me … but my family and those around me.


Whilst I was given the freedom to work out how to do things for myself, using a combination of little arm, foot, and mouth, there were so many more limited things I couldn't do.


Help was always needed getting dressed.   I loved summer because I didn't have to wear so many layers.  I felt free to be able to help myself.   When winter came it was a different story.   I had to put layers on to keep warm and I couldn't be as flexible as I was in summer.   I couldn't wear jeans because they were very restrictive.   I usually had things made for me, plus long sleeves shortened or rolled up and that was so annoying.   I didn't like the things I had to wear because they were hand-made … but they were very well made, comfortable and warm.


Being dependent on others to help was very hard.   You have to learn to accept that people helping you are trying their best to help.   Not being able to do things the way you wanted to do them was the hardest thing.

Thalidomide took my independence away.


Having to prove that I could do things, even though it was different to others, was also annoying.   I had to prove I could go to the toilet by myself before I was allowed to go to my local school because we had no teacher's aids to help us back then.   I had to show that I was capable of doing most things.   Having to deal with that every day was exhausting.


Walking along the street with my family and being pointed at or laughed at was very hard emotionally.   I knew I was different … I didn't need others to point it out, because that made it real.   All I really wanted to do was run and hide, and be normal.


Growing up was hard.   Although I had a wonderful Mum, family and friends around me, I still felt isolated.   I went through so many emotions as one does normally, trying to find out who I really was.  Though I had my Faith, life was still hard … but My Faith got me through the hard stuff.


Anger and jealousy were big things in my life.   I was angry that I was like this and jealous because I couldn't do what I wanted to do.   I was limited in what I could do in life, although I did try to do most things.    I was limited in my job opportunities, and not being able to hug people especially my family, my husband and my boys … or anyone for that matter.


Not even being able to do chores around the house and always having to wait for someone to help you was frustrating … although a lot of people would say otherwise.   Now I have to pay people to come in and help with the vacuuming, mopping and bathrooms because I can't do those things myself.


Thalidomide has robbed me of so many things.   I did not want this for my life.   If I could have chosen my life this would definitely not be it.   But this has been my life and I have coped as best I can in my circumstances but I still do not like it.


This is so unfair.


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          Trish - My Life

                                                                                                       "Feet weren't meant to be hands!"

                       

Thalidomide just didn’t affect me … it effected my whole family.

I was born in a body very different to my brother and sister.    The only difference was, that with me, my mum took one tablet in the early stages of pregnancy, and that one tablet sealed my fate in life. Can you just imagine the delivery room?   Instead of the usual ‘congratulations you have a beautiful bouncing baby girl,’ there would have been absolute hushed silence and gasps of horror as I was born.   I was whisked away into a corner of the room and Mum never saw me for three days because the doctors decided that I was to grossly deformed for her to love me.   These doctors didn’t know my mum, who is the most wonderful woman in the world, and knowing what she went through with me breaks my heart.    She lives with so much guilt for taking that one tablet.   The doctor didn’t even give it to her for morning sickness … he gave it to her to stop the vomiting associated with her migraines.  That same doctor then destroyed all her medical records and denied that she had ever been a patient of his.

 

How did the drug affect me?   For starters, I have no arms, I have three little fingers attached to a little hand that basically comes out of the side of my shoulders.  There was also heaps of internal damage done to my heart and lungs which has resulted in numerous open-heart operations, and I still have more in the pipeline.

 

As I like to say ‘thalidomide is the drug that just keeps on giving’.   What I mean by that is, not only did it destroy my body the day Mum took the tablet, it is still destroying my body today and every day that I’m still here.

 

My childhood was of course very different to any other child.   I didn’t walk until I was nearly 7 and then I had to be carried everywhere (by mum, family and even my teachers carried me from classroom to classroom), until I had major heart surgery when I was 12.   Although they repaired my heart I still get extremely tired very quickly.   I can’t walk far and I can’t walk uphills/stairs as I get breathless, so I never knew the joy of running and skipping - the everyday childhood fun that was taken off me because of thalidomide.

 

Thalidomide created my very confronting body image and the hardest part I think, is living with the cruelness of people.   The bullying has been horrid to say the least, and that’s not just by other kids who are bad enough but by adults who are just as bad, if not worse.  I have had doctors look down on me and say I am worthless and that I would never amount to anything.   I have had doctors poking and probing my body like a lab rat because my body is “so different” with no compassion as to how they were treating me.  One doctor told me "I would never have friends" because who would want to be friends with someone with no arms”?    One doctor said “I am too weird to know what he was looking at!”   I have had physiotherapists say they won’t treat me because my body is too different.   It amazes me how some doctors and specialists I’ve visited, don’t even know what Thalidomide is or what it did to unborn babies … and yet they still prescribe it.

 

It also amazes me how people think they have the right to say the most horrid things to me when I’m out in public.  It’s no wonder that there are days, even weeks, where I do not leave the safety of my house.

 

After I left school and went to claim unemployment benefits while I looked for work, Centrelink said that I had to 'prove that I could work before they would give me unemployment benefits!'   None of my friends had to do this so, why did I?   Lots of arguing with them about fairness … and I lost!    So they sent me to a sheltered workshop for the mentally challenged where I had to sit and shove plastic cutlery into plastic bags for an airline.   I was the only one there with a physical disability.   After 4 months of working for nothing I went back to Centrelink.   Their response was "We thought you would stay there, as that is your place in society!"   More arguing, and this time I won.   I was awarded my unemployment benefits ... 2 weeks later I had a full-time job as a receptionist.   I worked hard and paid my taxes for many years until my body gave up in pain.   I live in agony every day, I have a headache 24/7 … it just never goes away, and my hips, knees, and neck hurt every minute of every day.   I applied for the Disability Pension and Centrelink told me that I wasn’t disabled enough!   It was another long battle with them to finally get that pension.

 

The pain in my body is horrendous and extremely debilitating.   I need knee and hip replacements but have been told that I can’t have them as mechanical ones don’t bend the way I need my body to bend, just so that I can eat and drink.   Feet weren’t meant to be hands but that is exactly how I must do everything, since I have no arms, thanks to thalidomide.   Can you imagine getting dressed and eating or cleaning your teeth with your feet, every day?   

 

It is no wonder my body is falling apart ... Thanks to Thalidomide.



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             John's Story...

                                                                                                     "I pay the price!" 

My life began with a neurotoxin so potent my wee body was inevitably damaged.    On the 26th of July 1962, my deformities became plain for all to see.   The NZ Ministry of Health issued a directive to recall Thalidomide tablets nationwide the very next day.   Clearly, enough of us had survived the poisoning and were born alive.   We had become an irrefutable embarrassment to The State.   Its lucrative collaboration with a British/Nazi drug cartel had hit a major road block … their cash cow was killing and mutilating babies by the dozen.   

               

Guess who takes the fall?  None of them … not one!  Not the Crown, nor the British Manufacturer.  Not the neurotoxin patent holder, and certainly not the local distribution network and governing/authorizing body that is our government!   They all weasel out of amends to us by abnegation of liability.    They stood as one, firmly behind their wall of lawyers, speaking in psychobabble and Bureaucratic protocols.    Now, they chant the “Statute of Limitations.”   Utterly shameful ... as I’m still totally here and my duress is still very much in flux, and without limitations!    Utterly shameful, and now unrepentant to boot ... grrrrrr!

               

I pay the price.   Every day since my birth I pay in humiliation, then pay in lost opportunities, then pay some more by denial of companionship.  Every day I suck up the knowing that somewhere, a few get to over indulge in “The Good Life” at my, and my fellow Thalidomide survivors expense.  Thanks for that ... F***n A****es. 

So time and time again, clearly I pay, and so have my parents & siblings.   Parents paid with feeling of guilt and undeserved liability and the burden of our misfortunes.  My father couldn’t face any of it at all and he ran away when I was just a couple of months old.  I was brought up entirely by Mum and no father figure replaced him.  I don’t even know my father’s family, I have 3 bothers somewhere I believe, aunties, and uncles too!   Is that torment for me?  Yes it is … all of the above … most days.

 

How many times must a young boy consider if his father ever missed his son as much as the son considers it to be his own fault for his father’s leaving?  It took me 2 decades to realize that it wasn’t my fault and that it is not my burden to understand my father’s withdrawal.


Most of my adult life I also falsely believed my genes were defective, and so I avoided fatherhood with an unfortunate misplaced fervor.   A while ago, I learnt this is not the case ... but, choosing not to be a Daddy ... big mistake!  One I truly do regret, and always will.


Despite my obvious shortcomings, I do have a good head on my shoulders and did quite well in school.   But getting a job after school was another sorry story.    I was really good at all sciences and art, so I planned to start out as a Lab technician in Kinleith Forestry mill.    When the ACC department got wind of it, they soon concluded that I’d be a hazard to myself and other staff in the workplace.  By their arbitrary conclusion and without any work place assessments done, I was rendered pretty much unemployable in the science fields.   So much for the dream of being the next Ernest Rutherford, eh?  


 lf employment was the only realistic route.   My chosen profession was in the arts … stained glass!   That didn’t go so well either.    I was fabulous at crafting glass, but selling my work to others, not so good.   You see it’s difficult when my sales pitch includes funny arms and jokes about breaking glass. You know what, imbeciles who speak slander like this, clearly do not deserve my time and I’ll no longer suffer fools.    Do you know that complete strangers can deal out unwanted torment with narrow minded discrimination, petty & shallow judgments, and sometimes will even deliberately exploit one’s assumed weaknesses!    Sadly, I’ve concluded that mankind on the whole to be a foolish and gullible bunch of puppets that are prey for the most selfish and greedy few who rule our world.

               

           I have a single token of advice for everyone ... never give any quarter to strangers bearing sweets.  Do not trust their intent until it becomes clearly visible by deeds of kindness and genuine fellowship.  But even then, always cover your ass whenever your face is turned.



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                                                Lance ~ My Life

                                                                                           "My teenage years were horrendous"  

My name is Lance. Born in July 1962 I am one of the younger Thalidomide victims.   My parents were told to take me home and love me while they could; I wasn’t expected to live long due to my Thalidomide injuries.  These include a deformed digestive tract and anus, no gall bladder, holes in my heart, missing eye nerves, crooked eyes and facial palsy.  I have no ears, no ear canal on my left side and on my right a tiny opening, severely impeding my ability to hear.


 As a baby and toddler my mother kept a bonnet on my head at all times to hide my ear and facial deformities from the world and minimize the comments and open stares from passing strangers.   My father always removed it stating “He is a normal little boy just missing ears.”  


When I started school I had to suffer thick rimmed ‘coke bottle’ glasses prescribed by the eye specialist in an attempt to straighten my eyes.   Having no ears, the glasses were held on with elastic making me an easy target for the other children who constantly flicked the elastic and verbally taunted me. 


I was an easy target for adults as well.   I remember the head mistress of the day singling me out in front of a packed assembly saying “FLETCHER you sit over there. YOU are repeating kindergarten.   If I had MY way you’d be at the SPASTIC school.”   Needless to say most of the other kids and some of the adults present enjoyed her performance.   I may have looked different to everyone else but there was nothing wrong with my mental capability.   Thankfully in today’s society this sort of showmanship is neither acceptable nor tolerated.


When I was 8 my parents drove me 12 hours to Melbourne to see a Doctor who specialized in artificial ears.   When we met his first comment was “I am so sorry.   You have driven all this way for nothing; the artificial ears won’t hold the weight of those glasses.”   He introduced my parents to a plastic surgeon who convinced them that guinea pig surgery was the way forward.   Within 24 hours of our arrival in Melbourne I was on the operating table for 7 hours as they began constructing two ears using my own body for parts.   Two more operations followed at ages 10 and 12 leaving me with some serious scar tissue and ears made from rib cartilage that looked like they were melted onto my head.   Recoveries were long and excruciating and always in the men’s ward, one time next to a guy who had shot half his face off in an unsuccessful suicide attempt.   More surgeries were scheduled but I rebelled; so much trauma at such a young age and outcomes worse than what I had to begin with.


In year four I decided I wanted to be a police officer after they visited our school but I didn’t get past first base due to my hearing and sight issues.


My teenage years were horrendous, constant teasing and of course no girlfriends, which was very tough on my self-esteem.


My family moved away from the city and I married young, to a country girl, a wonderful soul who married me for who I was on the inside and not what I looked like on the outside.   We had three beautiful children together; but I was angry; very angry and bitter.   I feared that my life would be cut short, over before it started, and I couldn’t cope with any of it, so I walked.   My Thalidomide issues were all consuming, leaving me disabled in ways I didn’t see coming.   I later met my beautiful wife of today, Lesley, who gave me confidence, who helped me love myself even though I hated what I look like.


I had always considered myself “the lucky one” when it came to Thalidomide because I had arms and legs.   It wasn’t till I was in my 40’s when I was told by a fellow victim, “How the f%*k can you be the lucky one, you are a victim of Thalidomide” I was forced to reassess.   I was now even angrier at Grunenthal, Distillers & the Australian Government (who allowed the sale of the drug untested).


I took redundancy at 51 because the Thalidomide peripheral nerve damage was starting to take its toll; I suffer headaches, trigeminal facial nerve pain and my entire body aches day in day out.   I have weekly massages and chiropractic appointments just so I can get out of bed each day.   My diet is monitored constantly as my liver is working overtime to compensate for my missing gall bladder.   Every morning I watch my wife leave for work, not because she wants to, but because she has to so we can survive.   I’m left at home, hurt and frustrated because I have become a kept man due to the effects of Thalidomide.


The love of my wife, five children and three grandchildren are my reason for living. If not for them I wouldn’t bother.   I push myself every day, as do all my beautiful Thalidomide friends, to make the best of what is left, after so much was stolen from us by the “Wonder Drug” that was Distaval (Thalidomide).



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                                               Richard ... My Thoughts

                                                                        "My future is being dictated by my disabilities"


As I sit and type this with my thumb, being the only complete digit I have, I reflect on a life that for the most part has been good.   But, it is one that has been constantly determined by my disabilities. My disability has dictated the majority of my life choices.    My occupational choices and my leisure activities have not been made from all options available but rather from the options that are left after removing those that are obviously not suitable for a person with my disabilities.  I fought for the right to obtain something as common place as a driver’s license, even though I was able to clearly demonstrate that I could competently drive a vehicle.


My personal health is now deteriorating to a point I am having to rely on others.   I have had major spinal surgery and I keep my chiropractor’s phone number on speed dial.   I have recently been diagnosed with arthritis in my wrist, which is distressing because I only have one wrist.   I have had to cut down my work hours as I am past working full time.    I am only 55 but a full day at work leaves me tired to the point of exhaustion.


My childhood is now distant however I have no bad memories.   I feel my parents must have spent most of their adult lives making sure I was able to live as normal life as possible.   It is only recently that I learned how my parents fought for my right to go into the public school system.   My father spent a night in goal fighting for my rights to go to a regular public school.   The “system” wanted me out of sight and the recommendation to my parents after I was born was to commit me to an institution.   I am sure my parent’s life was dictated by my disabilities.


I am in a very happy and successful relationship however as I deteriorate I note, with bitterness, the extra burden I place on my partner; be it the extra hours that need doing at our business or the jobs that need doing at home.   What extra my partner can’t do we now have to employ somebody to do. My family’s life is dictated by my disabilities.


When I was young I was proud and independent, nearly six feet tall and bulletproof, now I am tired, physically broken and psychologically breaking down.   


My future is being dictated by my disabilities.



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                                                                             Mark's Story 

                                                                         "My greatest fears revolve around my future ..."

My name is Mark Chorlton and I suffer from a number of significant health problems.   The major defect caused by Thalidomide is phyocomelia of the upper limbs.  The most prominent health problem is a severe chronic pain condition secondary to severe spinal scoliosis which has required four major surgeries (1974, 1976, 2005 and 2007).   It has been postulated that this spinal condition was the result of Thalidomide.   In addition arthritis has been diagnosed in my right knee and there is significant arthritic deterioration of the cervical spine, specifically the C3 to C6 vertebrae.   My chronic pain condition is treated by the use of pain killers (Oxycontin or Tramadol BD and Endone PRN) combined with stretching exercises, hydrotherapy, massage, chiropractic sessions and rest when needed.   At the beginning of 2016 I was diagnosed as having a large oesophageal diverticulum and giant bulla of the lower lobe of the right lung.  I had surgery to rectify the diverticulum in January 2017.


I have also been diagnosed with clinical depression and have been under pharmacological treatment (Prozac) by a GP for many years post treatment by a Psychiatrist.   As a trained Psychologist I also engage in a number of cognitive behaviours as a means of managing my psychological and pain states.   Like other Thalidomider's I am often anxious about my future physical health and am also concerned about my future financial position.


I was born on 28 April 1961 and at three days of age I bled profusely from the mouth and anus when being fed by my mother.   Fortunately, the medical staff at the hospital were able to stop this bleeding.   During my first 6 months of life I was continually sick and I understand I was at or slightly below my birth-weight at 4 months of age.   I also had problems learning to walk and suffered many falls, the most severe causing a severe laceration above my left eye requiring three stitches.


Bullying and staring by others was a constant during my school years although the level and severity changed throughout the course of my school career.   The issue of staring has been incessant my whole life and continues to this day.   I have noticed that as I age that the stares are more often unfriendly and have a look of disdain about them.   That is not to say all looks from others are negative, just that their number has seemed to increase as I move into my later middle age.   What I can say is that I always attract the stares of others wherever I go.   This can become highly aggravating and at times elicits a negative response from me towards the other person.


One of my worst experiences of bullying was being “pissed on” by a drunk patron in the toilets at the Beaches Hotel whilst his drunk mate looked on and laughed.   I was so shocked I didn’t know what to do or say.   Fortunately, such extreme instances of abuse have been few.   Most bullying has been directed at how I look and it was often the intention of the individual to make fun of me rather than cause physical harm.


My deformities have had a major impact on most aspects of my life and have impacted on areas such as personal relationships, potential careers, and activities of daily living and personal hygiene.   The formation of intimate relationships with women was a major issue for me for many years and was a real psychological issue during my late teens and early 20’s.   Dressing and personal hygiene have always been activities that have been difficult or impossible to perform in a normal fashion.


The largest impact my physical state has had on me has been my need to retire on medical grounds from my academic career as a University Lecturer in 2009.   Following my 3rd and 4th major spinal surgeries in 2005 and 2007 respectively, my chronic pain condition reached a state that it made work an impossibility for me.   I had reached the stage where I was either at work or at home in bed resting for the next work day.   I had no life outside the workplace and my home life began to suffer dramatically.   In addition, my pain levels had impacted on my cognitive capacities and ability to concentrate.   Leaving work was a psychological blow as well as a significant financial one.


Currently my health is OK but I have increasingly become incapable of engaging in maintenance activities around the house.   I pay a private contractor for garden and home maintenance and mowing.   Indeed, it has reached the stage where most physical tasks required for home maintenance are beyond my capabilities and paid assistance is required. Engaging in domestic activities has also become problematic with increased difficulty mopping and vacuuming due to my spinal condition which is exacerbated by my short arms.   We have been able to obtain some assistance from the NDIS which provides 6 hours of domestic assistance every month.


My greatest fears revolve around my future financial security and my physical health.   I have noticed recently that driving causes pain in my spine and neck.   I am also finding it increasingly difficult to walk and I am unable to walk any great distance without pain.   My fears are that I will be unable to drive or walk unaided in the future.   With increasing health issues comes the spectre of increasing expenditure on health related items and treatment. With a fixed income from my UniSuper Disability Pension and the Diageo ex-gratia payments my biggest fear is not having the finances to pay for any needed treatment or possible modifications to my car or home.



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                                                                 Fiona ~ My Story

                                                                                "Our bodies are literally falling apart"

I was born in April 1962.   My mother had been taking Distaval (Thalidomide) regularly for insomnia before falling pregnant with me.  Then when she did become pregnant with me, she had only taken 1 Distaval tablet in the first trimester.   On her prenatal check-up, the doctor asked her if she was still taking the drug.   Mother told him that she had only the one.   He told her to stop taking it as he had heard that it causes severe deformities in the developing foetus.   


When I was born, there appeared to be only one small deformity, and that was a 3rd ear in front of my right ear, which was then removed later by a Plastic Surgeon.   What he didn't know is that the third ear had its own ear canal as well, which was discovered years later.   Many times I recall having to visit the ENT as a youngster. I was so terrified of him sticking those long instruments deep into my ears … I'd scream the place down.   So the only way to clean my ears was to put me under anaesthesia.    Even still today I shudder at the memories of Mother physically carrying me down the long corridor and be handed over to the theatre nurse, kicking and screaming, only to be succumbed by the vial smell of chloroform, then waking up and vomiting on the surgeon's shoes.


I’ve suffered from moderate deafness throughout my life.   I wasn't given hearing aids as my right ear canal is twisted and narrow.   My parents took me to the school for the Deaf and Blind. Apparently I was only there for a short time as they felt my hearing wasn't that bad.   I’ve always been able to get by with Lip Reading.


I also have thumbs that have no muscle.  I believe that Thalidomide attacks the thumbs before anything else.   I prefer to use my forefingers like chopsticks when lifting an object out of a drawer.   It has not stopped me from being able to play the piano.   I either tend to tuck my thumbs in, or use the big knuckle at the base of my thumbs when hitting a key.    Now both thumbs are getting arthritic and the joints have got spurs.


My left eye is noticeably lower than my right eye and is unable to turn to the left.   Apart it being long sighted, it doesn't shed a tear when I cry!   Only when I eat, it sheds a tear.   However with my right eye, it's short-sighted but otherwise normal.


When I was a toddler, my mother noticed when changing my nappy, the creases on my buttocks didn't match.   She had pointed it out to the local health nurse and also the doctor several times, but they didn't seemed to be too concerned, and would just say, 'she's a slow baby.'   My mother had heard from her neighbour that a new doctor had come to town, so she took me to see him.   The doctor checked me over and agreed with my mother that there was something seriously wrong. Here I was at the age of two, and could not stand nor crawl.    An X-ray was done of my hips and just two hours later, he drove to our home and mother still shudders remembering seeing the doctor running up the driveway, shouting out to her to quickly get that baby into the cot.    I was then flown to Melbourne Epworth Hospital where an orthopaedic surgeon operated on me.   The X-rays had showed complete dislocation, with the right femur having no ball or socket and the left femur having a malformed head.    After a major operation, I was then placed into an A frame plaster cast from waist to ankles for a year.    How my mother coped with bathing me particularly with my long hair was to lie me on the kitchen table with my head over the edge with a bucket underneath. 


I was three when the plaster cast came off and for the very first time I walked a whole 23 steps, much to the delight of my parents.  I had yearly check-ups with the Orthopaedic Surgeon till I was nine years old.  Then had another major operation where he removed the bolts and screws in my hip. I was bedridden for three months. 

 

By the time I was a teenager it was quite noticeable that my affected leg was considerably shorter than my left.   I had a severe limp, and was teased and bullied at school.   My knees have high Patellas and are prone to dislocations.   Still today, I have to watch my movements carefully, not to stand and twist my body which makes the knee pop out. 

Two years ago I had a fall, and had a small fracture in the knee joint. I was seen by Frankston Emergency.   An X-ray was done of my knee.   The young registrar said she'd never seen anything like it with my knee.   She was so convinced that the X-ray was faulty so ordered another one.   That came back the same as the first one.   Then she ordered an X-ray of my left knee and found that was weird too!   I then told her I was a Thalidomider.   I kid you not, she'd never heard of it.  


I was very fortunate to have children.   The only thing was that I had to be induced a month early as I had a small pelvis.  I had been told that I'd need a hip replacement when I'm in my early 30s.   I made it until I was 42 and even then they were reluctant to do it because I was considered too young, but with my medical history, it had to be done.   I had one request to give the surgeon, and that was to lengthen the leg so it was the same length as my left one. I remember the perplexed look on his face.   He asked me how on earth could he do that?   I said: 'It's simple!' When you go to put the femoral stem into the femur, just don't bang it all the way in!'  He was absolutely intrigued with my idea and said he would give it a go.   When I woke up from the anaesthetic, he excitedly told me that he had been able to do as I requested, and had given my leg an extra 3.5cm.   I now could walk without limping and carry a cup of tea without spilling it.    And..... amazingly, this procedure had somehow corrected the kyphosis and scoliosis of my spine!   


For about 4 years I had a new lease of life.   I was active, could walk and run and climb stairs with no pain.  Then I developed severe Osteoporosis and the scoliosis and kyphosis returned. My spine now is looking like Hunchback of Notredam.    I'm so self-conscious of it and none of my tops or dresses sit properly on me.   The pain in the lumbar region is so debilitating.   If I bend down even for just a minute, then stand back up is excruciating.   Getting out of bed every morning is pure hell!!   My spine most days feel like it’s been run over by a truck.   I was living on 8 Panadine Forte per day for many years and my GP made me be weaned off it for a few months and tried me on other opiates as my liver was starting to pack up.    However with the new painkillers I'm finding they take too long to take effect, so I’ve managed to convince my GP that I take a Panadine Forte first thing, just so I can get out of bed.  


Only just recently when I had a terrible toothache and had root canal surgery, an X-ray of my jaws shows that my left jaw joint doesn't have a head on it, thanks to Thalidomide!   No wonder I've had lots of chewing problems. 


I guess as we get older, and our bodies are literally falling apart, that scans or X-rays will show up things that we didn't know is Thalidomide related.



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