Liz Spitzer

Hello, my name is Liz Spitzer and I have Spina Bifida Occuture. Here is my story….

I was born in 1972, we didn’t have scans in those days like we have today, so my parents didn’t find out that I have SB, in those days if you had a disabled child you simply got on with it. 

Found  living with SB isn’t nice and I found out later in life that I was told I got it. I suffer from the hidden occulture type of SB and I knew something was wrong all throughout my school life I needed help especially with writing, reading & maths but never knew why!!! I blamed this on my mother because when i was small she never gave me the attention and taught me anything so when i started school I couldn’t even write my name!!!! I had problems with finding work but tried to get my hands dirty with any work going!!! and with low exam results to. Knew the basics to get me through life!!! I did blame my mother for a lot but in the end I felt horrible because it wasn’t her fault. Just hope she would except me saying sorry, when I found out I have SB & explained this wasn’t her fault did she except me saying sorry after me explaining  she did!!! (Years later found out my mother had a few nervous breakdowns whilst she was pregnant and after she had me – so hearing this how could i blame her?) 

 Anyway, through life I managed to pull through. Was looking for work and I always asked people if they had any work going? In the end I walked into a bar asking if they had any work going because i was looking for work, the barman said there was some kitchen work going, I replied with “I have my health and hygiene certificate (basic level) but not on me” So I had a chat with the boss, started of with a cleaning job. This was better then nothing, well, cut a very long story short six years later I was running the kitchen. The promotion went up but the wages didn’t! I was in my early twenties at the time running a very busy kitchen, training staff, working along with the chefs, their assistant if they needed me, doing the orders/invoices etc. But I knew something was wrong with my health but i didn’t knew why. My parents did not know about my SB, or they would’ve told me. Never heard of SB before I was told. Like I said my health was going down hill, I was in my early twenties and I finished work around 3pm and when I came home, quick sarnie and a brew (cup of tea) and went straight to bed. This is where I stayed until at lease 10-11pm. I got up thinking it was the morning. This went on for a very long time. Without the drug Solfidine (a powerful drug you can buy over the chemist counter) without this I could not do my job. In the end I had to have a chat with my parents. They informed me to retire. One of the jobs I had to do was to help my mum around the house, help her with the housework as much as I could. Which I did. My father used to come home from work for lunch and he often hear me cry, I was crying through my pain. Dad said to mum “What’s that noise?” Mum replied with “that’s our Liz, she’s ill, I didn’t knew how ill our girl is, we must do something for her, she tries her best to help me, something is seriously wrong with her, didn’t knew how ill she was, it’s breaking my heart, I hear her cry every day, how the hell did she run a kitchen?” dad said “you find the strength in you from somewhere” That afternoon I overheard their conversation. I had to retire from work when I was 25. Two years later after many tests at the hospital I got the result. They called it a long medical name, I said to doctors “You may understand medical book lingo but I do not what is that in plain English!!!” They said “YOU HAVE SPINA BIFIDA, you have the rare type of it hidden occuture which takes years to detect, YOU ARE BORN WITH IT, didn’t you know?” In horror I said “No I didn’t know this make great conversation around the dinner table tonight” They said “Didn’t your parents know? surely they knew when you were born?” I replied with “Of course they don’t know, would I be here at the hospital having every test under the sun if they knew? ” At that second my father walked through the door (he used to work at the same hospital) he said “What’s wrong?” I told him. He was shocked, with horror!!! Doctors said Brain, didn’t you know?” he said “Of course i didn’t know, my wife doesn’t know neither, she had a normal birth with her as far as I can remember normal healthy pregnancy as I recall, the birth was alright with no problems”. Years later they (doctors) just fooked me off with saying I have a 2″ hole in my spine.

  Giving up work was a nightmare, I came from a family of workers and worked from the day I could remember, even sitting at a desk really hurts my back, been  told by doctors strict orders I’ll never work ever again. And retire at the age of 25!!!! Yes 25!!! I know I wouldn’t mind early retirement but not that early. Now I am 46 (this is correct at the time of going to print) and it’s only within the recent years I have excepted this that I will never work again. Even doing simple housework chores really hurt!!! So how could I go and work for an employer? I am one of these people WHO wants to work BUT cannot, my mind is too active, that is my problem!!! Now living on government handouts!!! which i have paid for through the years whilst I was working, this is why you pay your national insurance for!!! 

I had managed to have my son normal delivery, when I gave birth to him. Doctors wanted to give me a C section to give birth but I wanted natural birth. Lucky I gave birth to him in just 2 and half hours of natural labour, but I had a terrible nine months of pregnancy. Spent most of it in hospital – mainly for rest. I did have a miscarriage with him in the early stages of my pregnancy but he wanted life and now he is a health 17 year old young man. Who I am very proud of.

When my son was 6-7 years old my SB was getting worse and now I suffer from very severe incontience. Doctors said all this was related to child labour. WHAT? 6-7 years later? I don’t think so. So to the wonderful world of the internet I did my homework & found that SB and incointience is all related!!! Tried to tell doctors for years that this was the problem but they wouldn’t listen… Anyway was sent to the local hospital for treatment and was transferred to a wonderful urology doctor who understand women’s incointinece. I explain to her that one of her collugues said that that was related to child labour and even she said “not after all this time, I have found out something, i did my homework and you are a very complex case (tell me something I don’t know) and your incontience is all related to your spine – all related to your Spina bifida, I’m no spinal expert but have spoken to doctors that are and they agree with me that all this is all related.” Thank goodness I found a doctor (apart from my GP) who agrees with me. I have had different treatments to try and cure my incointience but no cure and now I am waiting for major surgery. Just pray that this works!!!

My son is my carer, all throughout his school years i managed to get him the help to be my carer. Where do the carers go? to  scream/ to yell? to let their problems out? I managed to get him the help that he needed through a group called YOUNG CARERS, and once a month someone who he build a bound with came to see him at school and took him out of class and had an one on one. This help him so much. Then the group that help him went out of business, or something on those lines, his support was gone. Then for years he had no support, then he attended secondary school and within this school they had brilliant student support so I emailed them because my son wanted this support back. How could he look after me? if he couldn’t have someone to look after his needs? The school was so supportive and the teachers were very understanding. Through this help he got the help that he needed, & I said to him “you are not alone, there are other kids out there that are carers and need this support so with the help of the student support and the principal’s help we got a group up and running called YOUNG CARERS, I think that this group is still up and running today. Hope so, because this group is our baby. Even to this day he is so grateful that i got him the help that he needed. But one thing that i never threw away, and this was his childhood, I gave him this, childhood is precious and you get one shot to it, you don’t get it back. I told him one day and told him these words “I’m given you your childhood is because this alone is precious, I do not want you to say in later years ‘mum you are disabled and I hate you because you robbed me of my childhood’ I want you to say  ‘though you are disabled you still gave me my childhood and I do not want to resent you’ “

Because I have learnt to be strong through my SB, I wanted my son to be strong through life, don’t let people walk over you!!!

On one of the letters that my urology doctor sent me I was shocked in horror to read that (she informed me that no other medical staff have done) and informed me that my SB is caused by a 2″ missing vertabra and this does explain the medication (1500mg of morphine daily plus other medication) and the pain I am in. I informed the urology doctor that she informed me that no other doctor did. I told her “i love you for this, you are honest with me, I just got told 2″ hole, but what caused that hole? a disc? something else?” when I informed my son (he is studying sports science @ college) he informed me that this is a big bone and does explain the pain and the medication I am on and suffer. 

I found years at school very tough, in the early years I remember having extra help with spelling, reading etc & this helped me a lot, I didn’t understand why at the time why I had this extra help, this carried on throughout junior school but this extra help stopped when I attended secondary school. All throughout my school years I was bullied with one thing or another, mainly because I was slow!!! I walk with a limp and this is why I walk with a walking stick/crutches now.  I hated school if it was not for the bulling I enjoyed it. In the 4th year I did stand up comedy and this made me stronger. 

Now I am a mother myself, I taught my son everything because I wanted him to have a better education that I ever did. He has done very well got great grades in his GCSE examinations and studying A Level (this is correct at the time of going to print) I could never do this. I taught him to stand up to bullies and name and shame folk when he was at school and he did. 

BUT 

Despite all the above I try and live life to the full and to the max, I try and walk every day and do my own housework, gardening etc, YES takes me a long time and slowly my life is going down hill BUT I do not let this stop me, I have a strong attitude, positive outlook on life, you only have one life, LIVE IT FOR THE MAX, have the laughs, I always try and laugh about life as much as i can.

Keep you mind active and strong as much as you can, do this and you’ll have a strong and an active life DO NOT LET anything STOP you doing what you want to do, YES SB has slowed me down can’t do certain things anymore but it hasn’t robbed my life I treasure it even more. 

Just because you have a disability of some form don’t listen to what others say, YOU are STRONG, and can DO ANYTHING just put your mind to it.  Whatever life throws at you keep your mind strong, tell yourself “I am strong, I will survive, I can do this today” but tell yourself “oh i’m ill oh the pain oh I’m ill” then you will be ill. Train your mind to stay strong and a very strong attitude towards life, friends and family. 

Love & Peace

Born with Spina Bifida Isn’t Nice

Kids can be so Cruel at School

But If They Find Out You Have Spina
This Makes You Stronger
Being Stronger Pulls You Through
Life Isn’t Fun With Spina
But Don’t Let Spina Get You Down
Let Spina Pull You Through
Spina Stops You Doing Certain Things
Don’t Let Spina Stop You
Be Strong
Be Postitive

Don’t Let Spina Get You Down
Smile & Laugh

Don’t Let Spina Win

Or You’ll Be Sad
It’s Not Nice Being In Pain
Do You Know What’s Life Like?

Being On Morphine? High As A Kite?

Knowing There Is No Cure

Slowly Getting Worse As The Years Go By
I Feel Like An OAP

They Have More Energy Then Me!!!
Why Me? Why Did This Defect Choose ME?

Why Me? Why My Mother’s Womb?

Not Nice Knowing To Retire

Retire way Before My Time, Retire Before My Folks?

Do You Know What Life Is Like?

Having This Cruel Defect? Wearing Back Braces?
Just For Support?

No One Knows How It Feels Only Those Whom Suffer
Has The Years Go By

I’m Slowly Getting Worse

But, I keep Smiling Somehow

This Is Why I Laugh About Life

There Is No Other Way 

Laughter Makes My Days Better

See Through The Pain!!!!

copyright Liz Gregory-Spitzer