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Wednesday, January 20, 2016

Scoliosis

I very rarely draw attention to the fact that I suffer from a spinal abnormality. But at the age I am now, I have the self confidence to not only admit to it in a very public forum, but also to show photos that I usually hide. 

 I was born with a genetic predisposition to this condition but it wasn't until I was 11 years old that the deformity was was noticed by my mother. That year on our annual holiday, my mother commented to the landlady of the flats (they had become friends over the years) that she thought something was wrong with my back as the clothes she was making for me seem to pull to one side. Mrs Ling in turn asked advice of her friend who was a veterinarian...yes a vet!!!! He looked at my posture, asked me to bend from the waist and then told my mother that she should take me to the hospital when we got home.

Eventually I was diagnosed with scoliosis or curvature of the spine. My mother was distraught that she ‘had a crooked daughter’ and insisted it was because I didn’t sit up straight... I carried that guilt until my mid twenties when I read an article which stated that it was something that I was born with. Treatment was a pretty hit and miss affair. Immediately I was sent to physiotherapy a number of afternoons a week after school. I had to do the set of exercises each day before school...naturally I hated doing them. But I was trusted to catch a bus to and from the hospital by myself for these sessions so that made me feel a bit special.

At the end of Grade 7 when I was 12, the orthopaedic specialist decided it was time for some different treatment. So the last week of term 4, I was admitted to hospital and put on a device that stretched me (straps under my chin and a strap around my hips, then the attendant turned the handles that the straps were attached to. I believe these machines had been used as instruments of torture, lol) Then when the doctor was satisfied with the amount of stretch, a body plaster was quickly slapped on then the traction was released. I started high school like this; mum bought me a uniform large enough to fit over the cast...I gained some notoriety at school as a rumour went around that I’d been in a horrific car accident. Everyone was nice to me so even though it was a ‘crock’ to be like that, unable to bend etc I had a lot of fun! The plaster casts went from under my chin to where my legs joined my body. The casts were changed about every 6 weeks and sometimes I would be sent home for a week or two without the a cast on. That was absolute bliss! This was the pattern of my life for 20 months. When I was 17 the specialist (in the public system) said there was nothing more to be done except continue with my physio. (There were operations being done where there were rods inserted in spines but my parents had felt these to be too risky and they weren't really informed by the specialist who had treated them with contempt.)
One of only 2 photos of me in my plaster cast...sorry one of my mum's blurry pics!
I went on to live a normal life never letting the condition be a problem. Yes at times it could be uncomfortable but not unbearably so.  I wore any clothing styles I wanted to, including backless halter dresses in the 1970s much to my mother's chagrin.
In my 30s I would wear close fitting tops and from the left side they didn't look too bad...
But as the years have gone by, especially
in the last 10 years or so, the 'bumps and humps' have become more pronounced as my spine deteriorates. So now my mother would be pleased as I tend to wear loose shirts over tank tops.
Wearing my 'uniform'  of loose clothing on the upper body, nursing 2 week old Maximo in 2013. 


Very dramatically, my GP told me 7 years ago that my spine would collapse within 2 years and I would be wheelchair bound. With the help of my Bowen therapist I railed against that and when my GP retired last August, she said I was amazing...well for now I am! Lol
A few years ago I checked out whether there were any support groups for scoliosis sufferers. I found a UK Facebook group called 'Look Good Twisted' but it has gone a bit quiet. I paid a subscription to an Australian association based in Melbourne...they took my money for 3 years without anything in return. But one day at the Zillmere Knit and Natter a lady working at the centre came up to me and said she noticed I had scoliosis, and said she did too! So Lenore and I have formed our very own support group. We hope to find others to join us but till then we two will have our catch up lunches and coffees! 
We have met at the lovely Matthew Thomas restaurant in Sandgate...the houses either side of MT are all beautifully restored just like the old Masonic Hall building in which the restaurant is located. 
The food is always very nice...my Portuguese chicken...
Lenore with her lovely meal...
So I have found someone that understands perfectly what living with scoliosis is all about. 

13 comments:

shez said...

Hi Maria ,what a brave and amazing lady you are,your positive attitude and zest for life inspires me,I am glad to be your friend and can't wait to catch up with you soon to give you a hug xx

Tracy said...

There are a lot of us with scoliosis out there. I only found out I had it when I succumbed to the pain at the age of 19. I think the years and years of ballet I had done before that had kept my core strong and protected me until that point. Now I know my limitations but I still never let it stop me.
Good on you Maria for telling your story.
Tracy xo

FlowerLady Lorraine said...

Thank you for sharing your story Maria. I'm glad you've found someone locally to encourage each other and talk with about this issue.

Love, hugs & prayers ~ FlowerLady

angela said...

Well done for being whoever you wanted to be regardless of want anyone, your mother, said. I hope you are not in too much pain everyday. That would be the worst

Susan said...

Good you now have some company. I certainly admire you for "going public" and I can imagine your younger years were a lot more difficult. Its good that you have been able to prove the doctors wrong - very wrong.

doodles n daydreams said...

It's great to have a friend who knows how we are feeling and can empathise. I hope your friendship continues to grow and bless you both.

Diana

diane b said...

That is terrible that there isn't a worth while support group. Good for you in starting your own. I taught a young girl who had it and she has had the rod operation and seems okay. The restaurant sounds good. I must remember that next time I'm over there.

Bev C said...

Hello Maria,

One of my girls has the same condition, I noticed a bone that wasn't right when she was 5 months old. She has extra bones in some places in her body and some not in the correct place etc. You will be surprised how common this condition is once you start talking about it.

Have a great weekend.
Bev.

margaret said...

I do hope you find others to join the support group, you certainly endured a lot as a child with the plastercasts etc you are so strong to have gone through all this and will be a great support to others as they are diagnosed, so good the Dr was wrong about ending in a wheelchair, all that physio has paid off in leaps and bounds, all the best to you and Lenore

Lin said...

Thanks for talking about this Maria - it is a condition that I had not heard of. Glad you haven't let it stop living a great life. xx

Cynthia said...

It's nice that you found a support group, or made one rather. It's nice to have someone to share concerns and so forth. I hope it's not too uncomfortable or painful for you.

creations.1 said...

I have a friend whose niece has this condition. She has had such a tough time over the years but like you she has just got on with life. She is now 17 yrs old and started at her first job. She has decided no more surgery and just gets on with life with the help of pain relief and support from her favourite physiotherapist. Such an inspiration for one so young. Good on you for just getting on with your life too and how nice to find someone to share your thoughts etc with - so good to have a support base in our lives!!

kiwikid said...

Oh how wonderful you have found a kindred spirit!!! Long may you support each other!! Those plaster casts must have been so difficult for you especially thru your teenage years. Well done you for getting on with life!!