I'm not Gillian McKeith

2010-11-23T04:46:00.001-08:00

In The Guardian today!

Congrats to the very talented Tim Rushby-Smith on his article in The Guardian today and a huge thank you for plugging DPPI's new guide!

http://www.guardian.co.uk/society/2010/nov/23/challenges-disability-pregnancy

Pregnancy, birth and early parenthood - a guide for physically disabled parents is available from DPPI here.

Scoliosis SOS - non-surgical treatment results

2010-08-01T03:52:00.000-07:00

I finished my four weeks' non-surgical treatment at Scoliosis SOS clinic two weeks ago and have since been doing my 30 minutes daily exercise at home, which is not too difficult as I am motivated to maintain my 'corrections'*.

First, I will tell you the good bits. I have maintained my 2cm extra height and was thrilled to achieve another 2.5 degree de-rotation of my ribs in the second fortnight taking it down from 16 degrees at the start of the treatment to 11 degrees at the end. This was definitely beyond my expectations.

I have since had practically no pain in the thoracolumbar area, which used to be a big problem. I guess the fact that I have grown 2cm shows just how decompressed my vertebrae were. By the end of each day, I feel an ache starting to set in but as soon as I hang from my wall bars and stretch out my spine with the exercises, this subsides.

On the downside, towards the end of the course, I developed quite a sore right shoulder which is aggravated by hanging, which is a bit of a bind. From talking to people with other conditions who have experienced intensive physiotherapy, I gather that this 'help one pain area and gain a new one' is pretty par for the course with this type of treatment.

In the last week, I discovered that my shoulder bio-dynamics were all wrong and therefore some of the exercises that were helping the asymmetry were overworking painful muscles. It would have been good to find this out earlier so that it could have been addressed. However, I was given some new shoulder strengthening exercises and advice on trigger point therapy to help with this problem.

My posture has significantly improved as has my understanding of my scoliosis and awareness of how I stand/walk/move. Overall, I am in less pain, in more control of my condition and feel that the treatment has been successful. I would recommend Scoliosis SOS to others with scoliosis. If anyone is considering treatment and wants to get in touch with questions, feel free to email me.

Reflecting on disability

* My experience at the clinic and all this talk of 'corrections' and the notion of 'wanting to be fixed' left me reflecting on the social model of disability. The medical model of disability represents the view that some people are disabled by impairments which need 'fixing', whereas the social model of disability says that it is society that disables people by lack of access. The medical model locates the problem within the individual, and the social model within society.

The social model formed the basis of the Disability Movement and has brought about a lot of change for the better in terms of disability rights. For example, I was able to take paid time off from work for my treatment because to not allow this could be seen as disability discrimination.

I had some interesting conversations with my fellow 'patients' at the SOS clinic about the meaning of disability. Nobody else there seemed to identify as 'being disabled' or 'having a disability' but this is something I have explored in depth and something that forms part of my identity.

Yet, having had all this treatment to make my condition 'better', I feel confused about where I stand with the medial and social models. I see what good the social model has done politically. But I can't help but feel it is oversimplified. Because who wouldn't want to eradicate their pain? Is it so wrong to want to 'be fixed'? My views are now 'post social model', based on the underlying beliefs of the social model but with recognition that lived experiences are complex and individual.

Back for more

2010-07-03T12:32:00.000-07:00

Well, I'm slightly nervous because I'm back at Scoliosis SOS on Monday for the second fortnight and this time I KNOW what I'm letting myself in for!

In my last post, I completely forgot to address the most important change after the first two weeks of treatment (and the whole reason I did it in the first place) which was a significant reduction in my scoliosis-related pain. (I was just so blown away by being 2cm taller that I forgot everything else! lol)

I'm actually looking forward to going back to six hours of daily exercise ... Because even though I have my very own wall bars installed at home and I have been keeping up with my 30 minutes a day exercise plan, the pains have started to creep back in.

It's maintaining the 'active corrections' (i.e. corrected posture) that is SO hard when your body is so used to being asymmetrical and just falls back into its old habits (not to mention the fact that my spine is obviously structurally assymetrical and that cannot be changed without surgery, which I'm not planning on any time soon).

It's fine when you are standing semi-naked in front of a mirror with a physiotherapist cracking the whip behind you - no, they really are quite nice, honest. (Well, 'fine' wasn't the first word that sprung to mind on day one, more like tortuous, humiliating, impossible ... but you could see what you had to do and it did, you know, WORK.) It's quite another thing when you are getting on with your everyday life and trying to subconsciously remember how to pull all your bits and pieces into line!

I fear that I have lost quite a bit of what I gained in terms of realigning my muscles but we will see. Sadly, I know I have gained what I lost in terms of weight! lol! And baring my jelly belly in front of yet another group of complete strangers is also nerve inducing. (I know, I know, that is the least important bit!) Especially when I'll be joining an established group halfway through so I'll be the 'new girl'.

Still, having two more weeks intensive treatment can only be a good thing in the long run, so (gulp) roll on Monday, eh?

Halfway through ...

2010-06-06T09:50:00.000-07:00

I've just completed the first two weeks of treatment at the Scoliosis SOS clinic. Wow, so intense in so many ways.

I thought it would be a lot of lying on mats stretching Pilates style and hadn't quite prepared myself for six hours gruelling physical exercise every day. Wall bars are involved. And hanging, lots of hanging.

But the good news is ... at the end of the first two weeks ...

I am now 2cm taller! Is it possible?!

My rib rotation is 2.5 degrees less!

Plus as a bonus, I have apparently lost 3.5 kilos.

My God, I am ectastic! Roll on 5th July for the next two weeks!

Scoliosis SOS

2010-05-23T03:10:00.000-07:00

Thanks to everyone who emailed me with their thoughts and experiences of Scoliosis SOS.

I am delighted (and hugely thankful) that my PCT has finally agreed to fund a course of four weeks treatment. Due to childcare and work commitments, I have opted to undertake the treatment in two blocks of two weeks, the first of which starts tomorrow!

It has been a long and rocky road getting to this point and who knows what the next few weeks will bring...

Wish me luck!

Scoliosis SOS

2009-11-07T07:57:00.000-08:00

Just a quick post after a very long break to say I had a consultation at the Scoliosis SOS clinic in London the other week and am now trying to get my PCT to agree to fund the treatment, after hearing that other people have been successful.

I would love to hear from anyone who has been to Scoliosis SOS about their experience. And also from those who have managed to obtain funding. You can email me privately via my profile page if you don't want to leave a public comment.

I'd really be interested to talk to people who have used this service.

Thanks!

Lorraine from The Apprentice

2009-06-05T02:52:00.001-07:00

It's been a while since I blogged here but just time for a quick one!

Did anyone watch The Apprentice on Wednesday? It was the one when they interviewed the final five and before the main show, they did an extra hour showing the friends and family and life stories of the contestants.

Lorraine, the oldest contestant (still younger than me!) talked about having scoliosis and having a spinal fusion as a teenager. I really liked Lorraine. She was a bit different to the other business types in pinstripe suits, wasn't she? I'm still hoping she gets her own Mystic Meg show.

I'm hoping to pick up the blogging again this summer when other work has calmed down a bit. Continued thanks to those who read and those who have emailed me.

Gill Goodrich on body image, relationships and motherhood

2008-09-06T05:28:00.000-07:00

Gill Goodrich, 51, lives with her husband and two teenage sons in Sheffield, South Yorkshire. Gill works part-time at Rotherham General Hospital as a Specialist Biomedical Scientist in Haematology and Blood Transfusion. She enjoys card making, cross-stitch and reading, and the whole family has started Geocaching, a kind of high-tech treasure hunt, which is a great way of getting everyone outdoors.

Here, Gill talks candidly about how scoliosis has affected her as a woman, from body image and relationships to motherhood.

When were you diagnosed with scoliosis?

I was diagnosed with scoliosis at about 14/15 years old but told that it wouldn’t get worse as I had finished growing. By my mid 20’s it was clear that it had progressed and a new batch of X-rays confirmed this. However, I was told that it was too late by then for anything to be done about it – I was simply too old!

How did your scoliosis affect your body image?

By my mid 20’s, my pelvis was badly tilted causing my right hip to be much higher than my left, and a noticeable discrepancy in leg length. I coped with this by making my own clothes in an attempt to hide my unevenness. I think in this regard my scoliosis actually helped me to find my individuality.

I was always quite a bubbly, friendly character, yet found it hard as a young woman to form relationships, as I was so self-conscious about my body that I could never take things to the next level, if you get my meaning!

Meeting my husband was the best thing that ever happened to me as he truly saw the person inside. Yet even so, as my scoliosis continued to progress and my body twisted more and more out of shape, I found that my self-image, and indeed my feeling of self-worth, became so poor that our intimacy was severely affected.

The progressive nature of my scoliosis meant that it became harder to find or make clothes to ‘fit’ as I reached my 40’s. As my body continued to collapse in on itself I went from 5’2” to 4’11”, causing my stomach to protrude, a very noticeable rib hump and my bottom rib to grind against my pelvis. Despite only being a size 8-10, I was wearing size 14-16 clothes in a futile attempt to disguise everything.

What challenges have you faced as a mother with scoliosis?

By the time I reached my 40’s, chronic pain was also becoming more of an issue and had begun to seriously restrict my activities. I felt like I was constantly letting the kids down by being unable to go places and enjoy doing things together as a family.

The thing which upset me most was when my youngest son came home from school one day in tears because one of his so-called friends had told all the class that his Mum was a hunchback. I wasn’t bothered for myself, but the effect it had on him will haunt me forever.

How did you come to have surgery and how has this affected your life?

The irony of my situation was that, having been told in my 20’s that nothing could be done for me; I never once went to the doctor about anything back related. I was actually being investigated for bowel problems and acid reflux when my GP suggested referring me to a specialist as it could be due to my twisted posture.

Assuming it would be a waste of time, I agreed to see a spinal specialist. I think you can probably imagine my shock when he suggested surgery to help stabilise my spine, especially since I was 48 by this time!

I wasn’t promised any great correction due to my age and the stiffness of my spine, but he advised me to do some research - as it’s certainly not a decision to be taken lightly - and let him know if I wanted to go on his waiting list.

I spent from October to Christmas reading everything I could find about spinal fusion surgery, went on the waiting list in January and had the surgery in August 2006 – aged 49!!

I am still amazed by the correction Mr Cole has managed to achieve. I now have two fairly even hips, a much smaller rib hump and have regained much of the height lost due to the twisting of my spine. I can wear close-fitting T-shirts and the leg length discrepancy is so slight that I don’t even need to alter trousers anymore!

Everyone who knew me before surgery has commented on how well I look (even how much younger I look!) and I feel great! My back pain is greatly reduced, although I do get shoulder/neck ache from time to time, and my bowel problems and acid reflux have completely resolved. I really do feel like I have been given a new lease of life.

The positive effect on my self-esteem has been profound. I honestly hadn’t realised just how much this was bothering me until afterwards. I had always assumed it was just the pain that was making me depressed. Needless to say, this huge confidence boost means that I no longer feel so disgusted by my appearance that I feel the need to shy away from even my husband.

What advice would you give to someone who has just been diagnosed to scoliosis?

The main advice I would give to a younger person who has just been diagnosed is to have regular check-ups with a scoliosis specialist. Some people are lucky enough to have very small curves which don’t go on to progress, or can be held stable by bracing.

Certain exercises can be very helpful in building up the core stability muscles, which act as a kind of ‘corset’ around the spine, thereby improving posture and often helping with pain relief. However, exercise is not able to alter the actual structure of the spine, therefore a curve which continues to progress post-adolescence needs very careful monitoring so that the surgeon can intervene if and when it becomes necessary.

As a general rule, the younger a person is when they have surgery, the quicker they will recover and the better the correction as there is less chance that the curve will have become rigid over time.

And my advice to any adults out there that have been told nothing can be done? - ask your GP for a referral to a different consultant for a second opinion as not all surgeons are happy to operate on adults, but I’m living proof that some of them are and it can quite literally change your life!

There will be a short break between posts while I gather and edit material for further interviews. It would be interesting to hear readers' thoughts and reflections on the interviews so far, so please do post your comments to share with others. Each of the personal stories published on this blog has struck a chord deep within me, with many of the feelings and themes explored echoing my own experiences.

Personally, I've been particularly struck by the similarities in terms of the distress caused by the cosmetic side of scoliosis, as well as the pain. I suspected that many women would feel awkward about the appearance of an uneven back due to societal pressure on women to conform to a certain stereotype. I hadn't realised before commissioning these interviews that men with scoliosis would share the same issues with body image. I found it very enlightening, moving and healing to read stories by men going through the same emotions.

I would like to thank everyone who has shared their experiences so far and continue to welcome new material.

Mark Wilkinson talks openly about psychological pain

2008-08-29T05:15:00.000-07:00

Mark Wilkinson is married with a 4-year-old daughter, and currently works as a health and safety inspector in South Shields, UK, as well as pursuing active hobbies including rock climbing and mountain walks. Mark has Schueremann’s Kyphosis, which is different to scoliosis, although there are similarities. You can find out more about the condition via: http://www.scoliosis-support.org/showthread.php?t=2737

Here, Mark shares his courageous and unflinchingly honest account of the psychological pain of living with his condition.

When were you first diagnosed with Schueremann’s Kyphosis?

I first noticed my spine was curved about the age of 10. I noticed people staring at me for longer than would be the norm. When I started high school, I was taunted mercilessly just about every day for four years, in every class. Games were the worse, taking my clothes in front of others left ashamed and embarrassed.

My parents took me to see an orthopaedic specialist when I was 14, around 1984. I wasn’t told by the guy what condition I had; I was told surgery would leave me paraplegic and just to get on with the rest of my life. The whole consultation took about five minutes, after which my father drove me back to the cruel, punishing torture that was school.

It was never mentioned again, except sit up straight, put your shoulders back, stand up straight. Well I was stood up straight, but it was structural not postural. My curve was probably close on 100 degrees back then, but the guy never measured me. I have been now and the curve’s over 100 degrees.

Can you remember the reaction you had when learning you had Schueremann’s?

I didn’t have any reaction, as I was never told what condition I had. I just knew when I walked into the consultant’s office that I had a very significant hunch on my back and I wanted to leave knowing I would soon have a straight back. That never happened.

I just felt numb and couldn’t stop crying.I sat a lot in my bedroom with suicidal thoughts running through my head. I thought about suicide a lot back then and returning to the taunts and bullies was terrifying. I would far rather have been physically bullied - physical wounds can heal, mental ones fester and mine are all locked in boxes deep in my mind.

Most people are aware of the physical pain associated with scoliosis and similar conditions but not everyone understands that it can also bring psychological pain. How would describe the psychological pain of living with Schueremann’s?

Awful, depressing, it’s always on my mind. Schueremann’s has run my life. I don’t do too well in crowds, as I think everyone is staring at me, laughing at me, taunting me. When in company, I always stick to the back or against a wall so I can hide my back. I wear very baggy clothes and rarely take my suit jacket of at work.I hate having to go to church for any reason, I can literally feel everyone’s eyes boring into my back.

I don’t like going to warm countries for holidays because I never take off my tee-shirt. I don’t go swimming; I would love to take my daughter swimming but psychologically I can’t, I would be too self conscious.

I had a nervous breakdown in 1998 and was off work for about five months and had to endure taking Valium to get me better. It was not a good time in my life. Valium is a nasty drug to take and even worse to come off.

What have you found helps you with the psychological pain?

I researched my condition in my early 30s and I came across this wonderful website called scoliosis-support.org. They made me feel welcome, I wasn’t such a freak, no one judged me, they just offered the emotional crutch I needed, and I wasn’t alone. For the first time, I didn’t feel so alone.

I am now on prozac and see a therapist once a week arranged through work. I have come to the end of the line with this disease. I am seeing orthopaedic specialist who deals with adult complicated cases and this is my last shot. If I don’t get what I want here, then I don’t think I’m strong enough to cope.

My curve is progressing, its over 100 degrees and I can feel my body going forward.I can sum it up best by saying I was happy for the first 10 years of my life, I hated the next 27 and I want the next 30 or so years to be better than the last. I don’t want to feel miserable anymore. I don’t want to keep hiding. I want to be normal, do normal things without having to constantly think about my back, stop letting my back rule my life.

How have your experiences with Schueremann’s influenced your life and out look?

It affects it everyday. I was so, so angry when I was younger. I hated the kids for taunting me; I hated my parents for giving me this dodgy gene; I hated god for making me into this, what I considered at the time worthless excuse for a human being. I thought I was the only one.

I didn’t know until many years later after finding scoliosis-support.org, that maybe I shouldn’t blame any more.Blaming was making me more and more ill. I needed to let go of the blame and these wonderful people helped me do that. It was a slow process and the only one available to me.

Knowing others were out there were having the same experiences as me, it saved my life, it literally saved my life. I can’t thank these people enough.I visit the website every day to help support those going through the stuff I did. It’s part of my therapy too. I cry sometimes when I read people are still going through the same torment I was subjected to. I honestly don’t think I would be alive today had I not found scoliosis-support.org about five years ago.

What advice would give someone who has just been diagnosed with Schueremann’s?

That’s easy - don’t take no for an answer. Lots of surgeons won’t operate on Schueremann’s because it’s a more difficult operation than scoliosis, with a slightly increased risk, but there are surgeons out there who will. So if you get ‘sorry I can’t do anything for you’, ask for a referral elsewhere, do your research the internet’s a wonderful tool, investigate who the surgeons are that can help you, find a support site. (I found scoliosis-support.org and I consider it to be the best. However, you need to find one you are comfortable with.)

Ask lots of questions. Usually you find someone who can answer the most obscure question. When you go see the surgeon, don’t be afraid to ask questions, even have them written down so you don’t forget and write down his answers so you can think about them later.If you’re a parent reading this please, please, please don’t take the word of the first person you see as gospel, investigate all your options, get a second, third, fourth opinion.

My back was left of the scrap heap for years. Now I’m taking things in hand. I have learned the hard way but back in the day things were different but advances in medical procedures have meant even the worse curves can be saved.The post code lottery that is the NHS hasn’t done me many favours over the years but now I’m back on my journey, I can just about see light at the end of the tunnel, there has to be otherwise I don’t know what I am going to do.

Since writing this, Mark has seen his new consultant and is feeling much more hopeful about his future. Like Mark, I urge anyone who is in distress over their scoliosis to share their feelings with others who have been through similar experiences. Please don’t suffer in silence.

Next week, Gill Goodrich talks about body image and self esteem.

Shiva talks about growing up with scoliosis in Sri Lanka

2008-08-24T04:08:00.000-07:00

Shivashankari Sivananth, aged 19, was diagnosed with scoliosis when she was one year old. She lives with her parents in Colombo, Sri Lanka, where she works as a Customer Service Executive. She enjoys reading fantasies and science fiction, watching fantasy and horror movies and doing 1000-piece jigsaw puzzles.

Shiva took some time out to talk about growing up in Sri Lanka with scoliosis.

What treatments are available for scoliosis in Sri Lanka?

None as far as I know. I had my surgery done as a research operation in 1992 in the U.S. Some of the bones in my spine were not filled causing a high risk of paralysis.

What is it like to grow up with scoliosis in Sri Lanka?

It's hell. Most people think that you are just some short shapeless person. I have come across several children and even adults who laugh at me behind my back or giggle in my face as if I am some big joke.

When I was ten I started schooling in Colombo. Despite my school being one of the leading schools of Colombo, I had a problem due to the lack of manners of students. They would stare and giggle at me whenever I entered a room. The smaller kids would point and laugh much to my embarrassment and discomfort.In addition, I was also badly bullied verbally and psychologically by my classmates.

The worst part was that the teachers took me as an easy prey and would attempt to scold me at every instance. They would also not let me do anything like Welcome Speeches, leading parts in dramas, Prizegiving speeches etc despite the fact that I was talented at acting, English & public speaking, mainly because they thought that I wasn't beautiful or shapely enough.

Since leaving school, I still have the problem of bullying in the office though. I find trustworthiness and true friendship hard to find. The way that the world looks at scoliosis has also made me a bitter and angry person.

How have you overcome these challenges?

I managed to overcome the social embarrassments by mostly ignoring them or giving them a cold stare. I also often put up good fights with the bullies so that they usually hated me and didn't wish to speak much to me.

I learned to sweet talk the teachers and look so innocent that they didn't have the heart to scold me without reason. I couldn't make them give me parts in leading roles in items, but I more than made up by being one of the top students in class.

What advice would you give to a young person who has just been diagnosed with scoliosis?

Never give up! If you think you can do something then you can!

I’m sure many of us experience times of anger at our situations, which is a natural part of being human. I would like to echo Shiva’s ending comments about the importance of not giving up when things feel difficult and ultimately in believing in yourself. Please see the links list on this blog for sources of support.

Next week, Mark Wilkinson talks openly about the psychological pain of living with Schueremann’s Kyphosis.

Simon Wainwright talks about kyphosis

2008-08-16T05:04:00.000-07:00

Simon Wainwright, pictured (on the left) as best man at his brother's wedding, was diagnosed with kyphosis at the age of 14. Kyphosis is a curvature of the upper spine which causes a bowing of the back (as opposed to scoliosis which is a lateral curve which may also include rotated ribs.)

Here, Simon talks about what having kyphosis has meant for him and why he is looking forward. You can make contact with Simon and others via the forum at http://www.scoliosis-support.org/.

What was it like to grow up with kyphosis?

I got bullied at school so it was tough to get called names like hunchback. I got bullied very much. Never ever did anyone relate to my condition.

How have your experiences with kyphosis influenced your life and outlook?

It has influenced my life a lot. I am part of a forum at http://www.scoliosis-support.org/ that gives support to people with scoliosis/kyphosis. My life has been a very big rollarcoster of ups and downs - more downs then ups - but hopefully my outcome will good as I have just had major spinal surgery.

As I got older my hump went from 40 degrees to just under 98 degrees. Following an operation to insert two titiuun rods and 26 screws, my spine has gone down to under 40 degrees and I am so much more confident about the way I look now. I don't have to arch my spine back now walking down the street. I can walk down the road with a lot more confidence ....

What advice would you give to a young person who has just been diagnosed with scoliosis or kyphosis?

Try not to worry but please make sure you get yourself checked by a surgeon who specialises in scoliosis/kyphosis and join a good forum like SSO as we can all help everybody.

Simon's full story will be appearing in CHAT weekly magazine on the 18th September so look out for it in your local newsagent!

Next week, Shankari Sivanth, talks about life with scoliosis in Sri Lanka.

Jack Norman on striving to be 'normal'

2008-08-09T02:19:00.000-07:00

Jack Norman, 63, retired from a long career in television promotion and marketing in 2006. He lives with his wife and son in North Georgia, USA and has two other adult children and three grandchildren. Here, he shares his powerful, moving and ultimately uplifting story of his struggle to live a normal life with a curved spine. Jack welcomes your contact via e-mail at jn2tv4@aol.com.

Can you tell me about when were you first diagnosed with scoliosis?

I was two years old when my mother took me to our family doctor and it was discovered that I had been born with scoliosis. The kyphosis was only slightly discernible at that time, but it was clear that my spine was curved.

My scoliosis did not interfere with my early childhood. I attended my first day at school holding a new school bag with a brand new ruler, eraser, un-sharpened pencil and wearing an "I Like Ike" campaign button.

The year was 1952. School was enjoyable for me then, because the curvature was not pronounced enough to be noticed by other kids. Interestingly, my family didn’t talk to me about my condition; so it wasn’t until I was in the first grade that I discovered it.

Curiously, when I would reach around to my back with my left hand, it was fine. But when I circled my right arm around to my back just below the shoulder blade, there was an obstruction. That was my first awareness that something was wrong with me, that I was different.

How was your scoliosis treated and how successful was this?

In 1963, when I was a sophomore in high school, my next-door neighbor told us about a doctor in New York City who was doing breakthrough back surgery and, in some cases, actually straightening curved spines.With that hope in mind, my family put me on a plane to New York City and made arrangements for my first surgery, a spinal fusion.

Even though Dr. Von Lackum was a pioneer and innovator in open-spine surgery, this was a radical and dangerous procedure for the times. However, he told my family that if I did not have the surgery to stop the progression of the curvature, I would be paralyzed or dead by age 35.

As a teenager, I was young enough that I trusted doctors and the medical system completely. I flew to New York City alone, caught a cab to the hospital and signed in for what was, at that point, an exciting adventure.

By the time I awakened in the recovery room, however, the excitement was gone. In its place was an agony that I never expected and will never be able to forget. I was told later that the surgery had been “difficult” and that I had spent many hours under the knife. It was, however, considered a success, and my scoliosis was thought to stabilized.

I flew home to Norfolk in a full-torso body cast. My mother and sister met me at the terminal and took me home for a four to six month recovery. Given the severity of my scoliosis, I am very thankful for my mother’s sacrifice in paying for my treatment. That spinal fusion enabled me to live the most normal life possible.

I ended up having a total of four surgical procedures, the last in 2002. I had thought all along that I had stabilized at 53 degrees and that it wasn't going to progress any further. Apparently, sometime between 1995 and 2000 the destabilization took place.

Change in pain levels over the years correlate directly with the sequence of surgeries. My overall pain level increased noticeably after each surgery, along with decreased flexibility and rotation of the spine, especially the cervical area.

How have your experiences with scoliosis influenced your life and outlook?

It is difficult to know exactly how scoliosis has affected my outlook on life. I cannot imagine life without it. It has been with me wherever I've gone, like a friend you don't want but in time learn to tolerate. I believe that looking back one day I will see that my disability has been directly responsible for my search within to rise above it.

For me, that search has led to a strong professional drive as well as to a deeper spiritual development that I may not have experienced otherwise.From my deep feelings of shame over scoliosis came an aggressive compulsion to succeed and to show the world that I was just as normal as anyone else.

This played out in the form of extremely long hours at work that I would dedicate to any assignment, along with a pattern of heroic endeavors to do whatever it took to fulfill any request made of me by my managers, regardless of how unreasonable.

I did my best to make myself indispensable and valued by my companies. I thought at the time that surely my 12-15 hour days and heroic all-night work sessions would cause me to be looked upon as “normal.” It didn't work! Even though I won numerous industry awards, substantial cash prizes and bonuses from my company and the praise of my peers and leadership, I could never silence that cry in me that said I was different, unequal to, and less than others.

My wife remembers a single day, perhaps the Red Letter Day of my professional life, when I was awarded a large cash bonus, was promoted to vice president, and received a standing ovation from my entire company. I missed the moment of glory, because I was at a hospital having x-rays made of my back. But later that night, after hearing about my promotion, I sat against the headboard of our bed and said to my wife, “I hate myself.”

Nothing could fill that empty hole in me. It was not until my spiritual search led me to a mature faith through Christ that I was able to accept myself and be at peace with who I am. Looking back on that frenzied life of trying to compensate for my scoliosis, I am very thankful for the place of peace I now enjoy. If my disability has contributed to bringing me to where I am now, then I see it as a blessing and not a curse.

Do you think the male experience of scoliosis differs to the female and if so, how?

The biggest setback for me as a male with scoliosis is its negative impact on my ability to participate in sports. I don't think I encountered many experiences more humiliating than having to explain to my high school gym coaches and peers in gym classes why I couldn't participate in the school athletics program.

Some coaches thought I was just shirking, others that I was weak, and of course in the showers peers ostracized me immediately for being different. The pain of this rejection was most acute at these times, especially for a young boy trying to form an image of himself and understand where he fit into his various social groups.

These events left deep emotional scars. As a 63 year-old adult, I have now made much progress in this area of self-esteem, but it is still painful to reflect on. Kids with disabilities suffer cruelly at the hands of so-called "normal" peers, especially males in the competitive field of athletics. For an adolescent boy or a teen, achievement in sports is where much of their positive self-esteem comes from.

When I wore what was known as a "Taylor brace," in elementary school through the 7th grade, I was a high-profile target for taunting. Perhaps you're familiar with this brace. At first glance it calls to mind images of the medieval "iron maiden," a device of torture that locked the victim into a hinged cage with protruding spikes.

My instrument of torture was made of a steel frame with holes for the arms and many leather straps that cinched the whole thing tightly onto the torso. Two steel rails in the form of a normal shaped spine pressed against my not-so-normal twisted spine and did its best to conform me to the shape of the steel one.

Growing up like this resulted in crippling self-consciousness that dogged me all the way through life. For someone who had spent most of his life trying to remain invisible from the eyes of others, the experience of speaking in front of a group was blatantly terrifying for me. I knew my fears were unreasonable but that didn't help.

Decades after I had put the physical brace aside, the debilitating impression it made on my mind and soul was still intact. I was terrified that anyone looking at me was going to know my dreaded secret that I had fought to keep to myself – that I was different, and worse, that I was deformed.

I had done my best to disguise the curve of my spine and hide my deformity, buying shirts an extra size larger to make them fit looser, standing as straight as I possibly could, and always either consciously or subconsciously, distracting anyone with me from seeing my back.

Really, it was not until I retired three years ago that I began to let go and to come to peace with myself. My entire career was spent in the emotional agony of feeling deformed and rejected and battling the chronic pain that drained me and gave me an appearance of being in nearly constant anguish. I thank God most of that is over now. It is bliss for me now to live daily with a family that loves and accepts me as I am.

What advice would you give to someone who has just been diagnosed with
scoliosis?

To be diagnosed with scoliosis today is much different that it was decades ago. With modern surgical techniques, there is little reason for anyone to suffer the pain and humiliation I experienced. Discovered early and with intervention, curved spines are routinely reconstructed and made normal.

The advice I would pass along for consideration for anyone with scoliosis is the same I would recommend to someone with any disability or serious illness: know who you are apart from your disability; don't let your disability define the person you are and are capable of becoming.

The greatest truth I have learned from my life experience so far is that we are more than our physical selves. To limit our self-view to what we can see in a mirror is to cheat ourselves of our best and most important part. For me the best part is my spirit and its perseverance beyond my physical body.

I’m sure Jack’s emotive story will touch many of us who have experienced similar feelings of shame about our scoliosis. Personally, I found it helps greatly to talk to others with similar experiences. Scoliosis Association UK have a peer network where they can put you in touch with others via http://www.sauk.org.uk/. Scoliosis Association US also have local support groups and hotlines - see http://www.scoliosis-assoc.org/

Next week, Simon Wainwright shares his experiences of kyphosis and why he is looking forward.

Erika Maude talks about non-surgical treatment

2008-08-02T11:43:00.000-07:00

Erika Maude, founder of Scoliosis SOS, talks about why she chose to seek non-surgical treatment for her own scoliosis as a teenager, and how this inspired her to go on and set up her own scoliosis clinic. Erika welcomes your questions via http://www.scoliosissos.com/ or telephone 01394 389 670.

Editor's note: Please note that my previous blog entry on the SOS clinic and all associated comments have been deleted for legal reasons. While I am happy for people to post comments on any of my blog posts, I cannot publish potentially offensive or defammatory remarks. Some people may hold strong views for and against particular types of treatment but please remember that the spirit of this blog is peer support for all people with scoliosis.

When were you diagnosed with scoliosis and what treatments were you offered?

My scoliosis was first diagnosed by my GP when I was eleven, but he thought my scoliosis too mild to worry about and so I was 13 when I finally got seen by an orthopaedic consultant who took one look at my x-ray and pronounced me an immediate case for surgery. I asked if there was anything else and he said I could try wearing a brace. Anything was better than surgery and my Boston brace became my constant companion.

Two years later, aged 15, I was told I could stop wearing it, but it soon become apparent that my curve was still progressing and at 42 degrees we were back to the dreaded surgery. When I enquired about non-surgical options I was informed there were none. Adamant that I was not going to have my back cut open and messed around with I vowed that I would prove my surgeon wrong…

Do you think that in some cases scoliosis can be 'fixed' with surgery?

It depends on what one means by “fixed”; there is no cure for scoliosis. No treatment exists that will guarantee to permanently straighten the spine to below the 10 degrees necessary to class it as scoliosis, without further intervention. Surgery certainly results in a fixed spine, in that it is rigid, but it is far from a long-term permanent, unproblematic and pain-free solution!

Scoliosis is a condition that affects not only the vertebrae (individual bones that make up the spine), but also the surrounding muscles, tissues and organs such as the lungs. It is therefore necessary to treat the patient and their scoliosis as a whole not just as a curved spine that needs to be straightened.

Since its opening in May 2006, Scoliosis SOS and I as its founder have come up against some very harsh criticism, despite having changed hundreds of scoliotics’ lives for the better, worldwide. Orthopaedic surgeons can be rather predictable in their steadfastness to avoid admitting that what we are doing is successful.

Why did you decide to set up the Scoliosis SOS Clinic UK and what is your role there?

Following my successful avoidance of surgery for my scoliosis using an established European method, I wrote about my experience in the Scoliosis Association UK’s newsletter – Backbone. My email inbox was flooded with people asking me where they could get the treatment in English and it was at that point that I realised England needed it first non-surgical clinic dedicated to the treatment of scoliosis and other related spinal conditions. This was prior to the time of Schroth reaching the USA.

I am both the Managing Director and Principal of Scoliosis SOS and I work at the clinic full time (literally – I’m typing this at 22:30!). I think it is fair to say that the clinic would not exist without my daily input as I encourage the medical and admin teams to strive for even better corrections and patient care…the before and after pictures on our website are testimony to this.

My reward is seeing the patients’ absolute joy at the end of each course when they discover how far they have come in just four weeks. Yet receiving recognition from fellow professionals has its merits too, as I found when I won Young Businesswoman of the Year Award for the East of England at the beginning of this year.

What treatment do you offer and how does ScolioGold differ from the Katharina Schroth method?

At Scoliosis SOS we offer the ScolioGold method. The difference between ScolioGold and the Schroth method is in the quality of the results. At Scoliosis SOS our results are second to none. ScolioGold is a hybrid of the best non-surgical treatments for spinal curvatures. People regularly comment on how much better our results are than those achieved by the Asklepios Katharina Schroth Klinik.

Patients of Scoliosis SOS who require Rigo-Cheneau bracing alongside their ScolioGold treatment are referred to Dr. Rigo's clinic or Ortholutions.

How much does treatment cost and is there any assistance available for those on low incomes?

ScolioGold treatment costs just £20 per hour. This is a fraction of what most chiropractors, osteopaths and private physiotherapists charge for non-scoliosis specific treatment. Courses last for 4-weeks and can be taken in one whole block of 4-weeks or two blocks of 2-weeks, both are £2,400. Patients have been able to secure NHS funding to cover the cost of their ScolioGold treatment, however as each PCT has different systems and policies we treat each application on an individual basis and this is discussed at initial consultation and in subsequent telephone calls.

What advice would you give to someone who has just been diagnosed with scoliosis?

Unfortunately, with the current NHS referral system it can sometimes take up to 12 months after initial diagnosis for a patient to get seen by an orthopaedic consultant. During this time the patient’s scoliosis or symptoms will probably be progressing, especially if the patient is in their teenage growth spurt. Even once a patient is seen by the NHS consultant there is often a period of “wait and watch”. Only recently one of my patient’s parents commented to me “why would I want to wait and watch my son’s back get worse?”

Therefore my advice to patients and their families is rather than wait and do nothing, come along to Scoliosis SOS for a free initial consultation with one of our specialists. That way you are still in the NHS system, but you can start learning about what is happening to your body.

Frequently our specialists get told by patients “I have learnt more in that consultation than I ever had in all the appointments I have been to with my consultant at the hospital”. There is no pressure to come for treatment at our centre and no catches; we provide our consultations free of charge to help patients make an informed decision about their condition and future.

Please note that while non-surgical treatment has been successful for many people, surgery may remain the best option for others. This personal and complex decision should always been made after extensive medical/professional advice. Next week, Jack Norman shares his moving account of striving to be 'normal'.

Susan Bennett talks about her spinal surgery

2008-07-27T02:38:00.000-07:00

Susan Bennett was born with cerebral palsy and diagnosed with scoliosis in her twenties. She runs the website http://www.livingwithcerebralpalsy.com/, which includes information on scoliosis. Susan is now developing the site further to include a blog for disabled people around the world. Here, Susan shares her experience of having spinal surgery in 2003.

How did you come to the decision to have spinal surgery?

I found out I had scoliosis when my back locked one day at work and I ended up in A & E. After taking an X-ray, the consultant said "Do you know that your spine is curved? You have what's called scoliosis, a curvature of the spine".

I was shocked as I hadn’t heard of scoliosis. I saw a specialist at the spinal assessment clinic and attended on a regular basis for x-rays and monitoring.

A few months later, I felt as if I was sliding to one side more now and the amount of pain was increasing. The consultant checked my x-ray and said that surgery would be the next step.

I was shocked but I went away and thought about it. I went back to see him and had an MRI scan and another full spine x-ray and we both agreed that surgery was the best option so I went on the waiting list.

What was your experience of preparing for spinal surgery?

On 15 Feb 2003, after a nine month wait, I received my letter for admission. I was relieved and the thought that I would soon be straight, and not having to use my arm to support myself, excited me.

On 25 February, I attended a pre assessment clinic where they did general tests and x-rays and I had a long discussion with the consultant about the proposed surgery. I was to have a posterior correction and spinal fusion from T10 to L5 .

The day finally arrived. On 12 March 2003, I was greeted by nurses at hospital and had a blood test done and saw the anaesthetist. My consultant came to see me on the evening and we all had a long discussion about the operation and the recovery process.

I had the surgery the next morning. I remember going to sleep at 9.00am and waking up in the same room at 3.15pm. Mum was there when I woke up and my consultant showed me my new x-rays and said that it was a success.

How did you feel after the surgery?

I drifted back to sleep then woke again. I was cared for by nurses. I was sick and I was also cold because my blood pressure was a bit low. I also had a catheter for a few days until I was able to go to the toilet and I had to have more blood.

There was a machine near my bed and the nurse said that it was to administer a controlled amount of morphine and that I could press the hand control at 5 minute intervals and I would get pain relief. I didn’t press it as morphine made me sick and I didn’t have any pain anyway from the minute I woke up.

When were you allowed home after surgery?

On 17 March 2003, I started physiotherapy, which involved being rolled one onto my side and helped into sitting. I progressed to standing with a zimmer frame, and then with the help of a sliding board, I was able to get back in my wheelchair.

Once I was able to get into my wheelchair there was no stopping me, I improved no end and started to walk short distances with the physiotherapist. When mum visited, we would go downstairs in the lift and sit outside in the sun. I went home subject to an occupational therapy assessment on 31 March after 3 weeks in hospital.

How was your progress monitored after you returned home?

I had regular physiotherapy and hydrotherapy and my progress was monitored throughout. I gained confidence every day and was able to do new things.

On 25th April 2003, I had my review appointment with the consultant who was pleased with my progress. My next review was on 29 August 2003 when I had two new x-rays taken and the consultant was very happy with the results. I had another review in March 2004, a year after surgery.

What changes has the surgery made to your life?

I feel and look really straight and I am delighted I had it done, I have a new lease of life and was pain free from the day it was done. I can't really tell my back has rods in etc it just feels like it’s never happened.

Please note that while surgery has been successful for Susan, it is not suitable for everyone with scoliosis and as with all forms of surgery, there are risks involved. Next week, we’ll be looking at non-surgical methods of treatment as I interview Erika Maude, founder of the Scoliosis SOS Clinic in the UK.

More interviews...

2008-07-26T04:39:00.000-07:00

17 August - Simon Wainwright on kyphosis and why he is looking forward

24 August - Shankari Sivanth from Sri Lanka gives an international perspective

31 August - Mark Wilkinson on the psychological pain of living with kyphosis

7 September - Gill Goodrich on scoliosis, body image and self-esteem

Thanks to all contributors so far for sharing their experiences for others reading this blog. If anyone else is interested in sharing their story, please get in touch the email on my profile page.

Over to you!!!

2008-07-22T05:43:00.000-07:00

Welcome to the all singing all dancing revamped super duper version of the blog. Okay, it's not that different but it's going to be... I'm vaire pleased to announce a series of guest interviews and contributions. First up we have:

Sunday 27 July - Susan Bennett shares her experience of scoliosis surgery

Sunday 3 August - Erika Maude, founder of the Scoliosis SOS Clinic in the UK, talks about non-surgical treatments

Sunday 10 August - Jack Norman offers the male perspective on living with scoliosis and chronic pain

I'm still looking for people to contribute or be interviewed on any aspect of scoliosis. It's not all about the medical stuff - I want to know about your life!

I'm particularly interested in hearing from people on scoliosis and body image, scoliosis and ageing, scoliosis and parenthood, scoliosis and identity as a disabled person, scoliosis and sex/relationships, scoliosis and art, chronic pain and creativity (feel free to submit a poem/photography). Basically anything you want to share is welcome!

Share your story - email me at shantaeverington@hotmail.com to contribute or arrange an interview.

Pain, pain go away

2008-07-19T02:09:00.000-07:00

Today I'm in pain.
One of the vertebrae in my neck has sort of well,
popped out.
It does it from time to time.

It's a poor vulnerable vertebrate sitting on one of the curves.
If I push myself a bit too far or make one false move, it's
OUT
The muscles around it have gone into spasm.

It hurts.
I cannot move my neck to the left.
I cannot type at this computer much longer.
I cannot even think.

I don't want to moan, complain, whinge or whine but this is what it is like to live with scoliosis.

13 questions

Inside out!

2008-06-24T03:43:00.000-07:00

Well, here's my monthly post... (Don't seem to be managing more than that on this blog!)

So... I've been reading Gillian McKeith's book. Apparently, scoliosis puts a lot of pressure on the kidneys. I've always suspected that it affected the internal organs anyway. All that twisting and squashing can't be good for the inside but it was good to have it confirmed.

I don't know if other scoli sufferers get this, but people always think it means I have a bad back. If only it were that simple. Then there's the headaches, neck and shoulder pain, coccyx, RSI and pins and needles in the arms and hands, not to mention the right hip and leg. In fact, on a bad day, just about the only bit that doesn't hurt is my left leg!

Now I find out my organs are suffering too!

Gillian McKeith's Food Bible

2008-05-21T04:41:00.000-07:00

Well, I'm now the proud owner of a signed copy of Gillian McKeith's Food Bible: the complete A-Z guide to a healthy life.

I wish I had a fancy do-da to scan it in but I don't so this is what it says:

Dear Shanta,

Wishing you well.

Keep blogging.

Much love

Gillian McKeith xx :)

(Yes, there is an actual happy face!)

I am so honoured!

Anyway, I haven't actually read it yet but I've seen that there is quite a big section on scoliosis at the back and there are all sorts of recommendations there. So when I have read it, I'm going to tell you about them and start trying them out. I'll let you know how I get on!

Gillian McKeith loves me!

2008-04-17T08:42:00.000-07:00

Well, maybe not personally.

But I just had an email from her 'official office' asking if they could put a link on her website to this blog. Or rather telling me that they had! But I didn't mind.

It's here: I AM ON GILLIAN'S WEBSITE YEY

So now you can see that I am a vaire vaire important person with scoliosis.

And I spoke to a very nice man with a broken wrist who offered to send me a free copy of Gillian's new book.

It's all good, except:
1) I will now have to make sure I post regularly to ensure I am worthy, but I find it hard to think of things to write about scoliosis without perpetual moaning. Oh well, maybe it's a licence to moan then.
2) I just hope I don't get bombarded with emails asking for medical advice. I mean, I love getting emails and am always happy to talk about my own scoliosis but I'm not an official medical type person. (Just a vaire vaire important person with scoliosis.)

Here is the update on my moaning: I've given in and am popping the anti-imflammatory pills. I don't even agree with long-term medication but that's what I'm doing. Maybe Gillian's new book can point me in the direction of some kinder alternative nutritional solutions. Big sigh

Christmas is coming! Christmas is coming!

2007-12-20T05:58:00.000-08:00

OK, I've just come from posting a Xmas message on my other blog - it's a split personality moment so I'm going to make the most of it.

I should feel stressed because:

My coccyx hurts like hell and so far I have not found any viable method of pain relief except standing or lying down like doh! I can really do that all day!

I still haven't received an appointment date from the NHS physio. I telephone them to chase it up and they said there is nothing on the system to indicate I am waiting so I should get a nother referral from my GP. I WANT TO SCREAM!!!!!

AND yes I know the tips for pain management involve getting plenty of exercise and plenty of rest but HEY, I said it is Christmas! I am suffering from EVEN MORE of a time famine than usual! Something's got to give and I think it's gonna be me!

BUT I STILL love it all!

I'm loving opening the advent calendar each day with smallboy. I'm loving the way he's taking every single ornament off the Christmas tree and running around the room with it. I'm loving hiding his presents in the study with the CLOSED DOOR. I'm loving watching him dress up for his first ever Xmas party and planning days with family and friends and his very first pantomime.

I said I'm lovin' it!! :)

My coccyx hurts like hell!

2007-12-06T06:34:00.000-08:00

I know it's a big joke having to sit on a rubber ring and all that but it's really depressing me. I could do without yet another pain zone.

I've never really had this problem before. A little bit when pregnant maybe but for the last week or so it's been agony. I don't know what I did to hurt it but it kills.

Then I felt it for the first time and urgh, it's kind of twisted to one side. I'm hoping it's always been like that as part of the curvature but I don't know.

Do any other scoliosis sufferers experience this?

Help!

Snip fest

2007-10-25T07:45:00.000-07:00

OK, this is really shallow but what the hell.

I went to get my hair cut the other day. Just a trim mind, I love my long hair. Maybe it's that cloak I hide behind, I don't know.

So we had the usual discourse along the lines of:

‘What do you want done today?’

‘Just a trim please.’

‘You really need four inches off.’ Holding split ends between forefinger and thumb.

‘But I only want a half.’

‘But you really need four. It’s very damaged.’ Look of disgust on face.

‘I’ll stretch to one.’

‘Ok. You need four but you have just one if that’s what you really want?’ Raised eyebrow.

‘I really do want just one.’

Anyway, then she cut my wispy straggly old hair dead straight across the back and I swear she took two and a half inches off. She showed me the result with the mirror and I nodded and paid and went home.

And then I flicked the hair that looked all lovely and straight and even at the back round to the front and it looked all lopsided. The right side looked about two inches longer than the left. Because where my back sticks out on the right, the hair actually has to be longer to cover it and end up the same length at the back. Am I making any sense? If you have long hair and scoliosis you’ll probably know what I mean.

And I thought that’s why I like it all straggly and wispy because you don’t notice the unevenness so much. So I was all cross and I felt very unattractive and fed up.

Then I got the scissors out and had a snip fest and felt a lot better. I dare not look at the back now though…

Travels

2007-10-11T03:58:00.000-07:00

It's time for an update. I see I haven't written since August. Where does the time go?

Well, I have been on holiday. Menorca. Selected due to it being the shortest possible flight. Two hours. Short flights are very good news for back sufferers and new mothers! The memory of the pain on the long haul flight and getting the letter from the doctor for extra leg room and all the palava still makes me shudder!

Still having lots of pain. Still doing Pilates. Still waiting for NHS physio appointment. I'm sure I've been waiting for a year now. If I don't mind travelling to RNOH, I can see a physio quicker but if I want to see someone locally, I have to wait forever! It's so frustrating! I don't want to travel up and down on a train every time I need to see a physio.

Speaking of train journeys, I went to Manchester recently for an author reading. Yes, I mean me, reading from my novel. I got chatting to another writer afterwards and he asked me if I'd written anything since. I told him that I'd written a teen novel about a deaf boy but I couldn't find a publisher. He asked me, what is it with the disability theme? (The first novel's narrated by a woman with a learning disability.)

This is the bit where I normally ramble something about wanting to write thought provoking fiction and tackle difficult subjects blah blah blah. But this time, I looked him straight in the eye and said, well I'm interested in disability because I have a disability. That shut him up! He looked me up and down. No wheelchair? Check. No cane? Check. He didn't ask. I volunteered. I have a spinal condition. Scoliosis. My spine is an S. If it were straight, I'd probably be 8 foot tall.

He laughed.

I think there might be some kind of progress here but I'm not sure what it is. S

Help for other mums (to be)

2007-08-09T04:14:00.000-07:00

Well SAUK have asked to reproduce the DPPI articles on pregnancy and scoliosis so that's great. I hope they help other women with scoliosis. At the very least, I hope they give women a bit more confidence to be assertive and ask questions.

I didn't even know I could ask for a consultation with an anaesthetist in preparation for an epidural should one become necessary during labour. I just had to hope and pray that I could avoid it and luckily for me I did.

But where is the advice? Where is the information?

If any disabled women considering pregnancy, already pregnant or new to motherhood needs information, you can contact the charity that I work for - Disability, Pregnancy and Parenthood international via the helpline 0800 018 4730, textphone 0800 018 9949 or email dppi.org.uk.

To me, the medical world remains a secretive and scary place. My 'baby' is now 14 months old and I am faced with a new dilemma - MMR. I am just cottoning onto the fact that dilemma and motherhood are two words that go hand in hand.

Read all about it!

2007-07-16T05:53:00.001-07:00

Hello my lovelies!

I'm back. Yes, it's been almost year but you know how it is, babies 'n all! Plus, I've been rather busy with my writer's blog and novel writing!

But I've decided to resurrect this blog because I had such a loyal following and I've been feeling very guilty about it falling by the wayside!

Anyway, to kick start my new resolve, I've had an article about scoliosis and pregnancy published in the Disability, Pregnancy and Parenthood international journal.

You can read it online at: Personal experience...pregnancy and scoliosis by Shanta Everington

It is followed by two professional articles:

Good practice... pregnancy, scoliosis and anaesthesia by Anita Holdcroft, Reader in Anaesthesia and Honorary Consultant Anaesthetist at Imperial College London, and Chelsea and Westminster Hospital

Good practice... childbirth, scoliosis and physiotherapy by Ann Mayne, Clinical Physiotherapy Specialist in Women’s Health and Jill Mantle, Fellow of the Chartered Society of Physiotherapy

And now that smallboy is a year old, I'm thinking of a follow-up on surviving the first year: babies and bad backs. If anyone wants to post me any comments/anecdotes to include, I'd be most grateful.

Cheers!

It's not over 'til it's over

2006-08-11T04:56:00.000-07:00

Gotta be quick - baby will wake any minute! Just to say, I had my bi-annual X-ray at RNOH Stanmore on Monday (husband looked after baby, I got to read a book on the train, it was almost a day trip!) and the registrar said my curve hasn't progressed and as it hasn't changed in 5 years I am now officially discharged. No more X-rays. No more monitoring. I am shocked. Pain is worse than ever (we know why) but I guess it's just pain killers and exercise then. I feel so relieved as I was so sure that the pregnancy would have made the curve worse as my bones felt so spongey.

Mummydom!

2006-07-13T04:41:00.000-07:00

Well it's taken me so long to update as baby came early on 17 June! He's absolutely beautiful but gives me little time to do anything other than change nappies, feed him, sing to him, rock him to sleep etc!

Anyway, you might remember that as of my last posting, I was delighted that my back was all a-okay during the pregnancy. Well, it's been downhill all the way since the birth...

My God, the labour certainly took it's toll with backache contractions and stirrups and God-knows-what-else and the carrying and bending over to feed etc - my back is in a terrible old state. In fact, the whole of my right side is agony, from my fingers (RSI back from holding bottles!) to pins and needles in my foot. Any advice from other mums most welcome!

And I haven't managed to get back into a routine with my stretches etc which hasn't helped. But Rome wasn't built in a day...

Anyway, updates may be a bit infrequent for a while and sorry if it takes me ages to reply to emails. I had an email from one reader about the depressing choice of summer clothes for women with scoliosis (also see my previous entry 'Does my back look big in this?'). I can't even think about my appearance as not only have I got a back hump to contend with but now a saggy collapsed souffle belly. Argh!

Pregnancy and scoliosis

2006-05-30T08:10:00.000-07:00

Oh my God, it's been over a month since I posted - shocking. The reason for this appalling lack of commitment is that my life is upside down! I haven't wanted to post this news on my blog so far but I feel I now must because I can think of nothing else - I'm having a baby in one month's time (as several of my committed blog readers/emailers will already know)!!!

I've also temporarily moved out of my house while building work is done and as I'm now on maternity leave, I have no internet access except from library, hence making bogging rather tricky.

Anyway, re the baby, I am so excited and touch-wood, so far the pregnancy has been straight forward. Before trying for a baby, I got in touch with other mums with scoliosis through SAUK and asked loads of questions about how pregnancy affected peoples' scoliosis and vice versa. Several members were kind enough to share their experiences with me, as have several of my blog readers and that has been very helpful and reassuring.

When I became pregnant last October, I was terrified about how my pregnancy would affect my back pain, especially as it had been quite bad but thankfully, it hasn't made it any worse so far. I've had new types of pain, such as in my pelvis and coccyx etc but I'm told that this is very common in pregnancy.

I have been worried about my child inheriting my scoliosis, although there is no conclusive evidence to suggest that scoliosis is hereditary. And at the end of the day, although I would not wish scoliosis on anyone, there are worse things that could happen. To say that I shouldn't have a baby if there is a risk of scoliosis would be like saying that I should never have been born and I don't think that, obviously!!! I found out at my 20 week scan that I'm having a boy. As scoliosis is more dominant in girls, this made me feel a bit better about the risks but only time will tell.

Anyway, I'm signing off now but if anyone reading this has any experience of pregnancy and scoliosis or is a father with scoliosis, I'd love to hear from you via blog comments or email.

In The Picture

2006-04-20T07:28:00.000-07:00

You know I've been rambling on recently about the media's portrayal of disability. Well, I was heartened to hear the the charity Scope has launched a campaign called 'In The Picture' to inspire and inform illustrators, writers and publishers to include disabled children in picture books.

You can find out more via their website: In The Picture

I really hope this catches on and extends to adult fiction and other forms of media.

Also, my book review of 'Deenie' by Judy Blume (book featuring teenager with scoliosis) has been published in Audacity magazine and they have agreed to let me write a monthly book review on books featuring disability. So I've got lots of reading to do. If anyone knows of any good books they think I should review, please EMAIL ME!

Disability one-upmanship

2006-04-04T03:26:00.000-07:00

In my day job at a disability charity, I've been collaborating on a deaf-led project to produce a DVD. The launch was a great event and it was good to see a mix of deaf and hearing people, mainstream professionals and disability groups together in one room.

One thing that I personally find very interesting is deaf people's perception of disability. Many deaf people who use British Sign Language (BSL) as their first or preferred language, see themselves as Deaf with a capital D. Deafness in this context is a cultural identity not a 'hearing loss' or disability. In fact, for many deaf people, disability is something of a dirty word. "There's nothing wrong with us, we just happen to be Deaf!"

It's interesting to hear this as a (hearing) person with a physical disbility. I too would like to say, "There's nothing 'wrong' with me. I just happen to have scoliosis."

Having attended many disability events over the years, disability politics never cease to amaze me. It's almost as if there is a hierarchy of disability. People with physical disabilities who find themselves being patronised might proclaim, "I might be xyz but there's noting wrong with my brain. I'm not thick you know."

So where does that leave people with learning disabilities? Cast aside at the bottom of the hierarchy, as if being 'mentally impaired' is the worst thing you could ever be.

It saddens me that we do this to each other. Sure, 'disabled people' represent a wide range of individuals and is certainly not an homogenous group but why all this one-upmanship? We're all different, disabled or not, so why don't we start celebrating this rather than putting down other disabled people?!

Embrace Yourself (part 2)

2006-03-15T03:39:00.000-08:00

You remember me mentioning Liz Mollison's play, 'Embarce Yourself'? Well, sadly I didn't get to travel from London to Manchester to see it but I have been in touch with Liz to find out how it went and she gave me her permission to include this important info on my blog. This is what she said:

"The performance went really well, and I had some great feedback. I've been encouraged to try and get hospitals to view the piece, in particular scoliosis specialists, to help educate them into the ways they treat their patients. But I'll look into that once I've finished uni!! (NotGillianMcKeith comment: GO, LIZ, GO! That would be fantastic. This kind of education into the social/emotional aspects of scoliosis is MUCH needed.)

"I did a few experimental things in the performance, the two guys playing doctors "braced-up" the audience one by one as they came in, treating it as a consultation. They used a bamboo rod, and industrial clingfilme to do this. I felt that was the best way to get the audience to properly connect to what I wanted them to think. Also, by doing this it meant that I wasn't preaching to the audience, and I was very wary of that. (NotGillianMcKeith comment: The idea of engaging the audience like that is so clever.)

"As well as this, to make the audience feel wary, and "vulnerable" I set the piece in a semi-circle, as usually an audience hides behind rows, but in a semi-circle there is nowhere to hide, and the audience is far more exposed. This meant that I could talk to the audience when they came in, in character.

"Overall, it went really well, I enjoyed it so much, and I got a bit emotional after the last show - especially with my mum in the audience!! I'm quite sad it's all over!! I was given really positive feedback from all of the teachers that came to see it. So now all I have to do is wait for the marks!!"

Well done to Liz. I hope she gets the mark she clearly deserves. I'm just so sorry I missed it!

The sheer audacity!

2006-03-08T02:25:00.000-08:00

Just wanted to let you know about a US disability magazine called 'Audacity'. I found out about this magazine through my work at a disability charity. It's well worth checking out - it has news, features, lifestyle, travel, sports, book reviews and opinion.

AND this month's issue has an article on blogs, which mentions mine! You can read it at: Roll out the blogs

Wow - my blog is famous!

Disability novel publication

2006-02-27T08:23:00.000-08:00

Omigod, I am so excited, I can barely contain myself - I'm hopskippin' an' a jumping! Before I tell you the reason for such behaviour, I must first apologise that this is a bit of a deviation from scoliosis stuff BUT it is relevant, honest!

I'm delighted to announce that my debut novel, 'Marilyn and Me', a story narrated by a young woman with a learning disability who wants to be Marilyn Monroe, has been accepted for publication by independent publisher, Cinnamon Press! Hurrah! The expected publication date is May 2007, so I will keep you posted.

Although this is not directly relevant to my scoliosis blog, I wanted to share this news with you because of the recent ongoing discussion on my blog about how disability is portrayed in the media.

My book was rejected by several mainstream publishers, who all said wonderful things about the quality of my writing but were concerned about marketability. One actually said (and no names mentioned here) 'a disabled character is a nice idea but not the sort of thing that our readers can identify with'... Oh dear. So there we have it. Disability discrimination is well and truly alive and kicking. (And has this woman not heard of the runaway success of The Curious Incident...?!)

If you want to follow my progress on this project, please check out my separate writing blog at East London Writer

Embrace Yourself

2006-02-21T01:49:00.000-08:00

I mentioned this on a previous post...

Liz Mollison will be performing her play called 'Embrace Yourself', with a cast of four, on Saturday 4th March (2pm and 6pm) at the Adelphi Studio in Salford. Tickets £4 or £3 concessions. (Limited seating of 16 per performance.)

Liz is a performing arts student and she wrote this play about her own experiences of having scoliosis and of wearing a brace as a teenager. The only creative work I have ever seen about scoliosis is 'Deenie' as mentioned before, so this is fantastic!

She will also be reading my poem, Specimen, featured previously on my blog and in Issue 6 of Coffee House Poetry, as part of her performance, so I'm pretty chuffed about that too!

Unfortunately, I haven't got the technical know-how to put Liz's poster up on my blog, but further information, please contact Liz direct via Lizmollison@hotmail.com, typing 'Embrace Yourself' as the subject of your email.

It sounds great.

The commuter's curse

2006-02-06T06:27:00.000-08:00

I've been inspired to dedicate this posting to commuting, after reading about a competition in the Metro Metro(free London Transport newspaper for those who don't know).

"PASSENGER FOCUS, THE national rail consumer watchdog, needs your views so we can campaign for a better railway." The competition is looking for 4 lucky readers to write a fortnightly blog on commuting, in exchange for a year's free travel. Of course, I entered!

I could be the voice of vulnerable London, raising awareness of what it's like to travel with a disability or health problem. I think Passenger Focus could do worse than to pick me! They need my views!

One of my blog readers, who also has scoliosis, has told me how difficult he finds his job because he's required to do a lot of travelling. I really empathise. I don't have to travel long distances but my daily journey to work is well over an hour - let's say an hour and a half.

Don't you just hate it when you get on a crowded train/tube/bus and there are no seats? I.e. every day! Plus, the seats are often so uncomfortable and too low for me and sitting in them only aggravates my back pain so I may as well stand anyway.

Plus (oh yes there's more, there's always more) - let's get started on the topic of 'priority disabled seats'. I don't know about anyone else but I find this, oh so awkward. You know the seats I mean, they're marked with a little blue or is it orange stickers, saying something like, please give up this seat for those less able to stand and there's usually a graphic of someone with a crutch or someone with a child. Or the words might even say, please give up this seat for elderly or disabled passengers, I can't remember.

Anywho, the thing is, if I'm in that seat and an OAP or someone with kids gets on, I always feel I have to give up the seat, because from normal viewing I don't look like there's anything wrong with me! I have no crutch, I have no wheelchair. I can hardly point to my rib hump and say, hey I am disabled, look I'm a hunchback. I know you have a toddler there, ma'am but I really need this seat more than you right now. And when you do pluck up the courage to tell people, you often get a less than sympathetic response (see my earlier post re COACH COW!)

So I either get up and offer the seat begrudgingly or I stay put with a fixed expression on my face, avoiding all eye contact. Pathetic! But, I do think in general, disability signs could do with moving away from just a crutch or wheelchair. There are so many people with so many different types of needs.

Like the other day, I was on the tube and a middle aged couple got on. They weren't old, they looked fine and dandy so no-one offered them a seat. Anyway, I was reading my book and then I started to overhear the man having an argument with a younger boy-man who he'd obviously asked to give up his seat. The man was telling him that his wife had cancer and was on her way to a hospital appointment. Oh crikey! I was ready to give up my seat.

The boy-man got very cross and refused to give up his seat (I think every other passenger jumped off theirs though) saying the man shouldn't make assumptions about him. How did he know he wasn't ill too? In fact, he said, he was seriously ill.

I was left wondering, was he totally blagging it because he didn't want to get off his arse or was this young fit looking boy-man actually in greater need of this seat then we all knew. I'll never know...

UK Katharina Schroth Centre

2006-01-30T08:34:00.000-08:00

Further to my previous post on the Katharina Schroth method, it was great to hear from Erika Maude that the UK Katharina Schroth Centre is now open! Apologies to Erika for spelling her name wrong on my previous post (now corrected) and my other mistakes...

But back to the good news, the UK Katharina Scroth Centre, founded by Erika, is now open. It is a private clinic offering rehabilitation treatment based on the Katharina Schroth method to English-speaking clients. For more info, visit: Scoliosis SOS.

Great news!

Even better news will be when the NHS recognise this method and start providing accessible NHS funded outpatient treatment for people like me who either can't afford to or don't want to spend a month away at a treatment centre (very difficult if you've got children etc).

I'm sure the founding of this UK service will have a great impact and help to raise awareness of this method, which Erika informed me has been successfully used in Europe since 1921.

I don't have info on th fees for the clinic so if you do want to know more, please email them direct (not me!) via: enquiries@scoliosissos.com

Keepin' it real!

2006-01-19T09:10:00.000-08:00

After a couple of information postings, I'm back to my usual musing this week.

Now that people have started contacting me about my blog, I've felt a sort of obligation to make it all informative and useful, rather than just a place to vent my thoughts and feelings.

After looking at other websites, like Erika Maude's etc, I started feeling a bit, well, frankly, inadequate. There's this positive ambitious 19 year old aiming to set up a clinic, who has created an award-winning information website and there's me. A 33 year old with a blog which amounts to ode to moan!

But then I thought, hey more and more people are contacting me and saying the website reflects their feelings etc so I must be doing something right! One thing that struck me is the number of people who've said things like, 'I know I shouldn't feel like this', 'I know it's petty/superficial/shallow to worry about my appearance', 'I ought to be mature', blah blah blah.

One thing that I want to do here is create a space where it's okay to acknowledge the difficulties and pain (emotional and physical) of scoliosis. There are no shoulds or oughts about it, we only get to feel what we feel and to try to deny our true feelings is not healthy or conducive to any kind of healing.

When I left uni about 10 years ago now, I trained and volunteered as a telephone counsellor, studied a certificate in counselling skills and have since trained and written counselling skills training materials for others. I know how important it is in any therapeutic process to be able to be acknowledge your true feelings. This can be very painful and it's often easier to shrug things off.

I spent years denying I had scoliosis and not wanting to face it and it did me no good. I am very happy and supportive of those who feel positive about their scoliosis. Being able to genuinely come to terms with having scoliosis is a great thing, denying how you feel about it isn't so great. I feel that it's important that people don't feel pressurised to be positive when they feel crap.

I hate those old sayings like 'It's not the end of the world' or 'There's always someone worse off than you'. It all amounts to 'Stop feeling sorry for yourself' and when you feel crap, one thing guaranteed to make you feel ten times worse is feeling crap about feeling crap - feeling inadequate or guilty about acknowledging or expressing your feelings.

So the message of this musing is 'Keep it real, folks'. 'Be true to yourselves'. I know, I know, I sound like a talk show host but these are actually very important sayings. Sometimes, having scoliosis is no big deal, sometimes it's even funny but sometimes, it damn well hurts like hell, and it's okay to admit that.

Katharina Schroth

2006-01-08T06:10:00.000-08:00

I mentioned before that I've tried Katharina Schroth exercises. (Let's call the technique KS for short.) I've had quite queries about this so here's some info.

I came across the technique via a visiting consultant physio at RNOH. I think her name was Inga or Ingrid, I can't remember but I do remember that she was trained outside of the UK. It is not a method widely acknowledged or taught in the UK.

Katharina Schroth was a German woman with scoliosis who developed her own system to treat her symptoms. Her techniques form the basis of the Katharina Schroth clinic in Germany. There is also a clinic in Spain but currently not in the UK. Lots of practitioners from other parts of Europe are surprised that the UK medical establishment doesn't recognise KS.

It's not rocket science. It's about retraining your posture and using special exercises to stretch shortened muscles and contract lengthened ones. The exact postures and exercise will obviously differ from individual to individual depending on the curves involved, but here, I share my experience.

The physios started by getting me to have more awareness about how I stand, sit etc. Many people with scoliosis feel as though they are standing straight and therefore the mind needs to be trained as much as the body.

I didn't know before this encounter that I tended to stand with all my weight on my left side, sinking down onto the left, nor that my right shoulder was pulled forwards. Obviously, I knew I wasn't standing straight because my spine is curved but I hadn't thought about changes that I could consciously make to my posture to stand in a more aligned position.

It sounds easy but I have to admit that I found it very difficult because I found it painful to stand in the 'right way' after my body has had years of standing the 'wrong way'. I'll admit, I was probably a bit defensive as I felt 'blamed'. I thought, of course I'm not standing bloody straight, I have scoliosis, what do you know! My muscles hurt when I was pulled and prodded into alignment.

The physios looked so pleased with themselves when they got me positioned straighter but I felt they didn't understand that I couldn't maintain that posture for more than five minutes!

That was when we moved onto the exercises, which are about retraining the muscles so that they allow you to maintain the corrected postures. A key aspect of the exercises is what is called 'rotational breathing'. I have a thoracic rib hump on the right side of my back and for me, the rotational breathing meant breathing to the side and back of my left lung, which automatically, although only temporarily, re-rotates the ribs in the direction they would be without the scoliosis. You take a very deep breathe and then, breathing out very slowly like a pressure cooker, you do some exercises in this 'corrected' position, which encourage the muscles to re-align.

I was given three or four exercises to do on a daily basis. It all made perfect sense and I feel it has a lot of potential with the right professional input and a lot of commitment on behalf of the 'patient'. I've been doing the exercises (on and off) for a few years. It hasn't reduced my curve or anything miraculous but I feel it helps manage posture and to manage pain a bit.

But I must admit that I do find it very hard to do them correctly without supervision or guidance. I started well and then forgot what I was doing and when I went back a year later, I was doing everything wrong! I would like to see a physio regularly on the NHS but it seems you get a limited number of sessions and then are 'signed off'.

In the (private) clinics in Germany and Spain, clients usually do the exercises all day every day under supervision of a physio for 4-6 weeks and only then are they expected to be able to continue unsupervised.

I think this would be much easier than just being shown and expected to get on with it at home but private treatment costs at least £3,500 for 4 weeks, and entails essentially living abroad for a month. I don't speak German or Spanish and I was too daunted about all it would involve - leaving my family for a month, taking a month off work, taking out a loan etc. But for those who want to do it, it may well be worthwhile. If you live in Germany or Spain, it might be easier for you. For others, I would recommend that you ask your physio to teach it to you as a starting point.

You can view the website of the Katharina Schroth clinic in Germany here:
Katharina Schroth Klinik

Another important website is:The Scoliosis Tree set up by 19 year old Erika Maude - a British patient who went to Germany for treatment when she was 15. Her ambition is to set up a clinic in the UK - I will be watching her site with interest. You can also download a paper on the KS method written by KS's daughter from Erika's site. (SEE ALSO MY POSTING ON 30th January 2006 for update).

Swimming in December - what fun!

2005-12-31T08:52:00.000-08:00

This is just a quick posting to boast that I've been very very good and made a head start on my New Year's Resolutions before the new Year has actually started by going swimming yesterday.

Note to self for next year, swimming on 30 December is not a good idea. Even when it is totally freezing cold outside, my local swimming pool is normally subtopical inside because they whack the heating up so high. You can never get properly dry afterwards because being in the changing rooms is like being in a sauna.

However, after the pool has been shut down for a few days over the Christmas break, it obviously takes more than a few days for the heating to kick in properly as the water was soo cold that the receptionist was advising people to go and test the water before paying for tickets.

Of course when I stuck my hand in the water it felt quite warm. When I actually took my clothes off, ventured into my swimming costume (cringing at my body as usual but not having to worry as there was all but one person in the pool) and actually stepped into the water, it was another story. Subtropical not. More like subzero. Probably not very good for tense muscles.

Ten very quick and very cold lengths was all I could bear before running to the warmth of the shower. But it was a start!

New Year Resolutions 2006

2005-12-26T04:42:00.000-08:00

I hope everyone is having a good Christmas break and enjoying Boxing Day today. I'm a bit bored with too much sitting around watching TV so thought I'd be productive and post up a few of my New Year's Resolutions, which are related to living with scoliosis.

And I am very very pleased with myself for actually writing these BEFORE the New Year starts, and even before Xmas, as I usually only get to thinking about them about a week into January, when I realise I have put on about a stone and racked up all sorts of debt over Xmas and need to make myself feel better by at least pretending to take some sort of positive action!!! It's that or starting the spring cleaning so writing the resolutions usually wins!

Resolution number 1) Be more disciplined about doing my Katharina Schroth exercises every day

When I was first taught the technique, I did my exercises religiously every day when I got home from work but gradually I started slipping and now I've got very bad. I know this is stupid as to coin a phrase, 'I'm only hurting myself'. So the New Year will be a good time to start doing this properly again. A few people have emailed me about the Katharina Schroth technique so I will be doing a separate posting on this in the New Year, explaining what i do and linking to other sites for more info.

Resolution number 2) Be more disciplined about taking other regular exercise.

This means no more agreeing to weekly swimming and then wimping out because it is too cold, I am too tired or I feel like staying in and watching EastEnders! Did not fare too well in 2005. Weekly sessions probably amounted to, ahem, no more than 10 out of 52 and that's being generous! Plus it includes swimming on holiday which is cheating! I have been good with pilates though and walking more rather than taking the bus or cabs.

Resolution number 3) Improve posture

After seeing so many different physios, chiropracters and other practictioners over the years, I know that my posture needs constant attention to help me manage my back pain by holding myself correctly, to minimise pressure and strengthen muscles. I am the world's worst for slumping over my desk all day and then slumping down on the sofa after a hard day's work. Not exactly helping myself, I know. Plus I don't stand so well. And my body looks so much better when I do hold myself properly. I must improve.

Resolution number 4) If all else fails, learn to accept body as is!

Hopefully, 1-3 above will help with general appearance of curve and rib hump (shudder at word). But let's face it, I'm never going to have a straight back. Ce la vie! I have to accept the things I cannot change because there's no point wasting emotional energy on them (easier said than done but I am getting better at this.) Keep remembering, no-one is perfect. Most woman have bits of their bodies that they hate - sad but true.

Resolution number 5) Don't be too hard on self.

One mistake I've made, oh just a million times before, is that I expect perfection in reaching my goals. So when I slip up and miss my first swimming session in January, I think, oh, it's all gone wrong, I've let myself down, what's the point in even trying. Hardly a very positive attitude, I know! Not very helpful either. I have to acknowledge that I will screw up and I won't do everything I said but that's okay. It doesn't mean I have failed or I have to stop trying. Tomorrow's another day. :)

HAPPY NEW YEAR!!!

New weblink - a mine of info

2005-12-21T03:07:00.000-08:00

I've been receiving more emails from other people with scoliosis who want to share stuff or just chat. In turn, I'm more than happy to pass on any interesting info that anyone emails me.

I was emailed a weblink on living with cerebral palsy, by a woman who has cerebral palsy and scoliosis. She has devoted a whole section of her website to scoliosis and it seems to cover a lot of different areas. You can have a look at:

Scoliosis section on Living with Cerebral Palsy site

The site has links to lots and of other sites and you may therefore find some of the information contradictory but it looks like a very useful reference tool to start your own information gathering. One word of caution I would always add when looking at websites is to always treat information with caution, check credentials of 'claims' and ultimately, make your own mind up as to whether it's worth reading.

I've also added it to the links section.

My blog is more of an open diary of my thoughts about scoliosis, rather than an information site but I do have links to other websites that people might find helpful so do let me know if you come across anything.

Calling all Billy Connolly fans (you might change your mind after reading this...)

2005-12-13T07:53:00.000-08:00

I've been thinking more about scoliosis and the media and I just remembered a piece from the Billy Connolly show which appalled me. I don't know if anyone else saw it. It was ages ago but I've only just remembered it (I was trying to forget, it was a hideous memory!)

I didn't even particularly like Billy Connolly but I had nothing against him either. I was sprawled out on the sofa with a cup of tea, channel-hopping as you do, when I started listening to his stand-up show. I think it might have been a show for a special occasion, I'm trying to remember. Whatever.

He was talking about dating this girl with a 'hunchback'. OK, red rag to a bull already. I sat bolt upright on the sofa. As I recall, he was going on about trying to seduce her on a beach. He was talking about digging a hole in the sand. The punchline was that the hole was for her hump to rest in while he shagged her. Big laughs. Ha bloody ha.

It was in such bad taste. I was just so shocked. I was disgusted. What was I supposed to feel pleased that at least he saw this poor deformed creature as shaggable? I should have complained but I didn't. Why do people still think such crap is funny?

On a slightly different note, I went to see Edward Scissorhands at Saddlers Wells on Wednesday for my husband's birthday. I'd already seen the film ages ago, but the dance adaptation was really good and surprisingly emotive. Although it was pure fantasy, it served to highlight how cruel people can be towards anyone who's a bit different in any way.

Now that we're entering the season of goodwill to all, I can only hope that people start to think about how hurtful such comments and actions can be.

Specimen

2005-12-09T04:33:00.000-08:00

Specimen

Stripped to your underwear,
embarrassed at your choice;
purple, lacy, flowers.
How inappropriate you are.

The doctor and his student
stare at your back and talk
behind you, about you, at you,
drawing biro down your spine.

Palms pressed tight together,
bent forward, as instructed,
you flop, you sag, you die
blood rushing to your head.

Copyright Shanta Everington 2005

First published in Coffee House Poetry, Issue 6, May 2005 (www.coffeehousepoetry.co.uk)

Remembering Deenie

2005-12-05T07:55:00.000-08:00

Hello blog readers (yes I have some!)

Sorry I've been so crap at regular posts since I got back from holiday...

I just got a very inspiring email from a young woman with scoliosis, who is writing a play about her struggles of living with scoliosis and wearing a brace in her teens. I think this is an excellent idea (why didn't I think of it??) and can only help to raise awareness about the condition. I've asked her to keep in touch and I'd really like to go and see it when it's performed. I love it when people email me and share their scoliosis news with me like this, so please keep the emails coming.

This got me thinking about Judy Blume's Deenie - a teen novel about a wannabe model who finds out she has scoliosis and has to wear a brace, which she thinks is the end of the world. Has anyone else read it? It's the only fiction book featuring scoliosis that I know about. I read it when I was a teen, after devouring the other Judy Blume novels, such as 'Forever' (which I thought was outrageously saucy at the time but probably if I read it now, I'd laugh!).

At the time, I didn't really want to identify myself as having scoliosis. And it was easy not to because I was never told to wear a brace or anything, as my curve was seen as mild and no observation was even done! (I know now that this was quite scandalous as 38 degrees isn't that mild and I now receive monitoring as an adult so don't know how I slipped through the net when younger.) It made me cry, as deep down, I knew I had the same thing wrong with me. I read it again recently as an adult and it made me cry again. (But then, I cry quite easily!)

Aside from my blog, I'm an aspiring fiction witer myself, and disability writing is something I'm particularly fascinated in at the moment. Finding quality fiction featuring disability of any kind can be difficult as the media often likes to portray disabled people as (at best) victims/poor unfortunates (there's that phrase again) or heroes/heroines, and at worst horrible monsters (note that scary films often use 'deformity' in characters to shock and scare. Where is all the good fiction focusing on disability in ordinary people with ups and downs like anyone else?

Okay, there's The Curious Incident of The Dog in The Night-time and classics like Does He Take Sugar? but these books are so few and far between.

I recently read an interesting novel by Kate Le Vann called Trailers about the lives of a group of studenst who share a house. The lead protagonist has a degenerative walking condition and her sense of shame and loss over this is handled sensitively. The marketing blurb goes to great lenghts to say this is not a book about disability blah blah and I had mixed feelings about that. I can see why they might want to marketit more widely and it wasn't just about disability, the lead character just happened to be disabled. But it sort of read as though they were worried people might be put off if they thought it was about disability.

TV's getting a bit better, I feel. I like that House walks with a stick. I like that ITV shows drama such Footprints in the Snow.

Does anyone know of any other fiction or other media that features scoliosis or good disability role models? I'd be very grateful for any recommendations.

Back to reality (but with a little ReddyBrek glow)

2005-10-24T18:20:00.000-07:00

I am back from my holiday in Cuba and it was wonderful wonderful wonderful. Four nights in Havana (culture and Communism) and ten in Varadero (Pina Colada and R&R). I would thoruoghly recommend it to anyone.

I would even go so far as to recommend Virgin and I never make commercial recommendations BUT I will make an exception because I phoned their customer careline for disabled customers before I went (after the usual umming and erring about whether I count as disabled blah blah blah - let's not go down that road again) and waffled on about needing extra legroom and before I could finish my sentence, a 'bulkhead' seat was booked (that's a good thing).

Plus for the first time in my ten years of being a vegan, I actually got a vegan meal without any fuss. (This has been requested from oh, so many airlines with NO success whatsoever - the moral of the story is always pack an emergency food parcel, even if it does mean your hand luggage is basically your pantry and you've no room for your straightening irons, which incidentally I didn't even use...) So yes, Richard Branson's in my good books.

As this blog is supposed to be about life with scoliosis, I will simply say that I have found a wonderful cure for scoliosis-related pain - simply lie on a sunlounger in 30 degree heat for ten days, doing absolutely nothing except um maybe a little walking and a little swimming and a little disco-ing (just the once mind!), have no stress whatsoever and strictly no sitting at a computer. (Okay, I confess, I checked my emails from Havana once. Okay it was twice. OKAY already three times but only because the connection was down the first two!)

Now, I am back in Blighty, not enjoying the cold damp weather (okay it's not that cold yet but it is 20 degrees colder than Havana, thank you very much). I am back at work. I am back at the computer. I'm sure I will be getting stressed again any time soon.

But for now, everything is A - Okay and I am so happy that 4 people have left comments on my blog - hurrah! People are actually reading it! (I had wondered.) I was starting to feel a bit lazy like I couldn't be arsed to keep posting but now I know that some, albeit a rather select, group are actually reading my blog, I will absolutely have to start making more of an effort. Plus I've asked the Scoliosis Association to list it in their next newsletter so I can't exactly cop out now, can I?

PS Yes, I probably looked hideous in my bikini but then so did at least half the people on the beach (I'm sorry) and they didn't care so neither did I. :)

Does my back look big in this?!

2005-10-05T17:11:00.000-07:00

Oh my God, I am going on holiday to Cuba tomorrow morning and I am feeling frantic. I've still got loads to do... Have I packed the right clothes? Will my flight be delayed? What has happened to my travel plug? Do I need my straigtening irons?! (You know, all the usual stuff!)

Also feeling a little anxious about back pain which will definitely be worse after getting up at 4am on little sleep and dragging heavy suitcase around, although wheels help! As does husband! Long flight will not be good but what can you do? It's that or Butlins and Cuba won. Have got a letter from doctor to say I have scoliosis and try to get a decent seat with leg room so will see if they take pity on me.

Feel like split personality - To insurance company, 'Oh no no, I am perfectly able to lead a 'normal life', I work and everything, my scoliosis doesn't affect me in that way please insure me and don't make me pay loads of money'. To airline, 'Grovel grovel, I am a poor unfortunate with a health condition or dare we say a 'd-i-s-a-b-i-l-i-t-y' please cater for my needs (or you may get done under DDA thank you v much)'. Anyway, this is the nature of the beast.

Then the next trauma is facing my body in a bikini. Oh God it is soo depressing. My brain knows that women's magazines are crap and models are airbrushed and unattainable (what was that line from that weird song, 'Never read women's magazines, they will only make you feel ugly'? Don't we know it). My brain knows that nobody is perfect. My brain knows that I must acept my body as it is. My brain knows it's what's on the inside that counts (but what if what's on the inside is someone so shallow that they worry about what they look like?! My brain knows that there is nothing I can do about having a lopsided back (although I can't bear to say the word 'rip-hump' out loud - oh my God, I hate it.) My brain knows all these things but I still feel crap in my bikini. Because after all, I'm just a girl. And however shallow and stupid and crap it all is, if everyone else is worrying if their bum looks big in this or that, how the hell am I supposed to feel with this back? (Plus I've got a fat tummy but that's another story.)

Oh well, short of sitting on the beach in a sack, I have no choice but to grin (or grimace) and bear it. This is me. I am what I am 'n all that.

Mavis, Magic and Money

2005-09-18T05:56:00.000-07:00

No news from insurance company to date...

I was just sitting at my desk pondering what to write about today, as it's been a while, when I started noticing the usual RSI symptoms in my right wrist (exacerbated by having rotated ribs and a dodgy shoulder, although granted my two finger typing technique doesn't exactly help - I really need to get friendly with Mavis Beacon and her school marm typing course sometime soon). Gasp! I had forgotten to put on my spanking new shiny lovely magic bracelet. You know the sort of thing, I'm sure - copper on the inside, which is supposed to go through your skin and into your bloodstream to reduce inflammation and the added bonus of two magnets, to do something wonderful to your magnetic field and boost your circulation.

I don't know if it really does anything or is a load of old hocus pocus but I'm willing to give anything a go, me. I've been wearing it for one week and one day so far and some days, I could swear my muscle fatigue is improving and then other days, I think I'm just throwing good money after bad, I've tried that many 'wonder cures' for pain relief. And I'm so vain that I'd paid over the odds for this bracelet with a rhodium coating on the outside to make it look like a decorative silver bracelet. I was so excited by my latest toy that I kept going up to people and saying, 'Look at my bracelet. Do you like it? I bet you don't know what's special about this bracelet.' I thought I was being all cryptic and replies would come flooding back asking me if it was made by a special Fair Trade project in Peru or whatever.

My mum took one look at it and went, 'It's an arthritis bracelet, isn't it?'. I was crestfallen. I thought it looked all pretty and lovely. I felt like a fool like you might if you use a commode and think it looks like a shabby-chic armchair. Hmm, maybe not. So I asked my sister. Same answer. 'It's an arthritis bracelet, innit? What you wearing that for, you haven't got arthritis, have you?' I didn't even know that the general public had a concept of an 'arthritis bracelet'. So, I grumpily explained that it's not just for arthritis, it helps with all sorts of muscular-skeletal complaints. The moral of the story is you can run but you can't hide. No I don't think that's exactly what I mean. Stop trying to pretend you haven't got scoliosis, maybe.

Anyway, back to wonder cures. So far, I've tried the following: physiotherapy (NHS and private), Katarina Scroth technique exercises (taught by lovely radical NHS physio who was chancing her arm), chiropractic (private), acupuncture (private), deep tissue/aromatherapy massage (private and persuading husband and family members for amateur versions!), spinal touch therapy (private and very bizarre), reflexology (private), nutritional consultation (private - then have to pay for magnesium and other supplements), TENs machine (privately purchased), magnetic back rack (privately purchaed), support bands, deep heat etc (private private) Pilates (fee paying classes and video), oh and let's not forget the magic bracelet (Â£28 in case you were wondering). It's an expensive business, having scoliosis.

About a year ago, I went to my GP and asked for a referral to an NHS pain clinic to learn new ways to manage pain explaining that I don't like using pain killers and she told me very helpfully (not) that she could perscribe me some daily medication (I forget the name) which stops muscle spasms. I was incredulous. 'I DO NOT WANT TO TAKE MEDICATION,' I repeated, silently adding, 'You fool, what part of no medication do you not understand?' Back to the referral. She told me it's not worth it as you'll have to wait 8 months and you'll only get 6 sessions but I can refer you to a very good private physio/acupuncturist. I know I'm sound like a 'grumpy old woman' but what has happened to the NHS? Are GPS getting commission for private referrals these days or what? What is the world coming to?

A consultant at the Royal National Orthopaedic Hospital told me that statistically people with scoliosis suffer the same levels of back pain as the general population. I hope not everyone suffers the back pain I have to put up with. He told me that my bad posture is probably the cause of the pain. Well excuse me, it's a bit hard to have good posture when your ribs are rotated by 16 degrees and your spine is curved at 38 degrees and nothing's where it should be. Having said that the physio team at RNOH are fantastic but the appointments there were time limited. So maybe, I'll need to add Alexander Technique onto the list of wonder cures to try...

Any thoughts on low cost pain relief gratefully received.

Insurance nightmare! Have I no rights?

2005-09-07T20:40:00.000-07:00

Okay. This isn't going to be an upbeat piece because basically I'm totally pissed off. And it's all social model today, I can tell you! Here's what happened:

I have a mortgage with my husband and we both had life assurance with critical illness cover. Then, for one reason or another, we decided to change the type of cover from decreasing term to level term (this means that if something happens in 20 years you still get the same amount of money not some pittance) and went with another company who we thought would give us a good deal. Anyway, I, stupidly, cancelled my policy after handing over the application form and cheque, after being assured that my paying the cheque meant I had cover straight away.

In my original policy, there was an exclusion for total permanent disability (with a long explanation) resulting from pre-existing medical condition of scoliosis - fair enough. Then this new company comes back with an exclusion for total permanent disability FULL STOP. Excuse me? So I can pay my premiums for the next ten years then get knocked over by a bus or whatever and get a big fat ZERO. How can that be fair? How can that be reasonable if it's nothing whatsoever to do with my pre-existing condition? Surely it can't be right? Surely that's discrimination, isn't it?

The rep went to great lengths to reassure me that I was still covered for cancer and heart attack and x, y, z blah blah blah but that's not the point! Why should I not be covered for any other form of total permanent disability other than relating to my scoliosis? I just ranted for, oh about ten years, at this rep sitting at my dining room table drinking my orange juice. It isn't really his fault, it's the underwriter blah blah blah so I tried to be 'nice'. Well, I wasn't really. That nice, I mean. And I had a face like thunder and rightly so. I think he was probably glad to get out of there.

So, anyway, I phoned up the company, they couldn't say anything over the phone (usual story), told me to write in, I've written in, we'll see what happens, I'm not a happy bunny. I'm pissed off. I'm really pissed off. I've now decided that I hate all insurance companies and financial institutions because they just want to make loadsamoney out of people and they don't care. Well, I knew that already and also, I can't really say I hate them all but you know what I mean. It's the little person against the system! It's the little person with scoliosis against the system!

Moral of the story - don't be lax like me, always think the worst and presume that there WILL be complications (it's easier than thinking things will go smoothly), don't cancel any policy until you've got the replacement in writing, don't sign anything without legal advice and, and KNOW YOUR RIGHTS! Hmm, yes, well, but what are my rights?

Okay, let's see. Pause...

I've just phoned the Disability Rights Commission for some advice. I was asked 101 monitoring questions before being put on hold for ten hours and in the end I gave up.

AAAAAAAAAAARRRRRRRRRRRRRGGGGGGGGGGGHHHHHHHHHHHHHHHHHH!!!!!!

Oh God, you've got to laugh or cry, haven't you? Sometimes, you've got to do both.

This whole charade isn't really that funny because what if something happens to me and my husband ends up caring for me and we have no insurance? It's not good. It's not good at all. And it's got me thinking about how people accross the whole spectrum of disability must have problems getting insurance and how horrible it makes you feel as though they're saying your life is not worth insuring, i.e. you are worthless and how rubbish it all is and where are our rights?

PS If anyone wants to give me any advice on this or share their experience in applying for life assurance etc, please email me. I'd really like to know what goes on.

PPS. I have now managed to get through to DRC and they pointed me in the direction of the appropriate codes of practice and they have advised me to contact them again when I hear back from the insurance company. Watch this space.

Update Dec 2005 Okay, it's kind of sorted now. NOT that I ever heard anything back from that particular insurance company, so no marks for customer service there. But I did manage to find another company to insure me on reasonable terms. Nationwide is the good company in case you're wondering. I won't tell you who the bad one is as I don't want a libel action.

To tick or not to tick

2005-08-31T19:00:00.000-07:00

There was a time, several years ago, when my hand didn't even pause mid-air for a nanosecond when filling in Equal opportunities forms and the suchlike. Disabled? Who me? Most certainly not.

But as the years went by, I started to wonder. Why are they asking this question? What does it mean? What do they want to know? It's now a standard question on many forms, whether applying for a job or a course, going on holiday, filling in medical forms etc. Since the concept of 'registered disabled' has become outmoded, the question is usually phrased as, 'Do you consider yourself to be disabled?'

Well, what kind of question is that? Ask me on a good day when I'm flying high and I'll say no. Ask me on a bad day when I'm feeling sorry for myself and you might get a different answer. Ask me on a very bad day - I'm thinking about a particularly distressing coach journey when I explained to the woman behind me (who incidentally was using two seats for herself) that I was in a lot of pain from my scoliosis and needed to recline my (one) seat (which she could avoid by shifting her butt to either or of her two seats) and she went into one with absolutely no concept of empathy or understanding whatsoever - and I'll say, yes, why don't they make coaches with better seating and why do (some) people have such negative unaccommodating attitudes (the cow)? Pause for breath!

Then the whole matter was taken out of my hands when the question was after suffering almost unbearable RSI symptoms, back and neck pain, headaches - you name it - at a call-centre type work situation, I tentatively started investigating possible solutions and came across the government 'Access To Work' scheme, for disabled employees. I rang them up and spluttered down the phone, 'I, I, I'm not sure if I count as dis-disabled or whatever but but...' I was met with a crisp, 'What's your problem?' or words to that effect, 'Well, it's scoliosis' I said. The reply? 'Yep, that counts.' Oh well. That's it then. I'm disabled.

If I'm totally honest here, I was depressed by that. Her comment didn't change my condition, of course not. But this confrontation of myself as a disabled person was not altogether welcome. I wasn't sure I wanted to be 'one of those' thank you very much, even if I did want some nice person from 'Access To Work' to come out and assess my working environment and make changes so that I could manage my scoliosis-related symptoms better as a result.

This started me off on a journey into thinking about disablity and what it means. In fact, I left that job a while after (no surprises there) and now work for a disability charity. I thought that might be a more supportive environment and help me with the whole disability identity thing. In a way it has but in a way, I sometimes feel a bit of a fraud when I talk to what I consider 'proper' disabled people'. I'm not really disabled, am I?

I'm not in a wheelchair. I don't have a blue badge. I don't claim disability benefits. I can hold down a job and go about my business. But I might have to lie down on the floor for an hour to recover and I certainly have to take a lot of care in sitting right and standing right and doing exercises every day and pay a small fortune for physio and complementary therapies and blah blah blah. I'm just a bit, well, different. I've got a condition. Is that the same as being disabled?

I've read a lot of stuff on disability from DDA to social v medical models of disability. If you're not familliar with these models, it's basically the idea that some people are disabled by society in terms of social, physical, or environmental barriers to their human rights, as opposed looking at disability as a medical problem within the individual. Kind of, it's society that needs fixing not the person. I support the social model for so many reasons but as a person who suffers a lot of pain from my condition, sometimes, I can't help feeling that there is a place for the medical model too - after all, I'd like my pain to be fixed thank you very much. But I'd also like people like said woman on coach and coach designers to buck up their attitudes, boy!

So the question remains, do I consider myself to be disabled? Like everyone else I'm able to do some things amazingly well, like cook a vegan cake and not others, like playing the drums. Okay, I've never even tried to play the drums! Now, I'm being facetious, I know. I just don't know the answer.

Ask me again tomorrow.

Some famous people who have scoliosis

2005-08-26T12:41:00.000-07:00

Don't get me wrong, it's not just famous people who count! But it's quite interesting to read about them.

1) Dr Gillian McKeith

If you don't know who I'm talking about or why my blog is called what it is - she's the one who does that TV programme, 'You are what you eat' and has written a couple of great books to go with it. She was interveiwed in The Sunday Mirror 'celebs' magazine on 10 April 2005: 'Gillian McKeith's shocking body secret revealed', with headline, 'My hunchback made me scared to undress'. Not exactly pc wording but I thought the interview was a brave thing to do.

2) Isabella Rossellini

You definitely know her - daughter of actress Ingrid Bergman, model, actress and author. I mainly remember lots of pictures in glossy women's magazines with red pouty lips for cosmetics ads. Anyway, she wrote about having scoliosis in her autobiography, 'Some of Me'. Her daughter, Elektra, also has scoliosis.

3) Rene Russo

I think you're gonna know her too - big Hollywood actress, although don't even ask me what she's been in. I'm a bit crap at remembering film titles, plus I don't watch a lot of blockbusters and I think she's done lots of those, hasn't she? There's a little spiel on her and others in American book, 'Scoliosis, Ascending the curve' by teen spokesperosn for the Scoliosis Association (USA), Brooke Lyons, chapter: Scoliosis Heroes. It's a great book. Available from Amazon, last time I looked.

4) Sarah Michelle Gellar

If you're 35 or under, or actually, if you're a man of any age, you're bound to know her as Buffy, The Vampire Slayer. I remember reading somewhere that she had scoliosis. Erm, I hope I've got that right.

5)Melanie Blatt

Singer who used to be in 'All Saints'. I know know much else about her but I read somewhere that she had scoliosis too.

6) Princess Eugenie (added to list 5 Dec 2005)

Apparently, she had a correction at Stanmore in 2002.

I'm sure there are loads of others. There are some more people listed in Brooke Lyons' book. If you know of anyone famous with scoliosis, email me and we can add them to the list!

I'm not Gillian McKeith

2005-08-25T19:40:00.000-07:00

I was really pleased to read Gillian McKeith's recent interview in The Sunday Mirror magazine, where she talks about her scoliosis. About how she used to worry that men would run a mile at the sight of her body when she took her clothes off. (Well, I think we've all had that worry, love, scoliosis or not! But it's true that you can feel ashamed of your body when it's lopsided and feel anxious about being different.) About how she copes with pain by non-invasive natural remedies such as Pilates and nutrition. (She had me running out to buy magnesium, I can tell you but I was already a Pilates freak.) About how she wants to be positive but how sometimes, when the pain's bad, it all gets too much and she gets depressed and feels sorry for herself. (Yep, been there, done that.)

I read it and thought she was talking about me.

Most of the things I've read on scoliosis are about children or about adults who had bracing and surgery as children. But, like Gillian, I'm an adult who has never had surgery, who battles with with scoliosis and is trying to find non-invasive ways of managing the condition. Some of the terminology in the article made me wince. I mean, who wants to think of themselves as someone with an ugly back deformity? Not me. That's why I'm always wearing baggy tops and working on improving my posture so it doesn't look so bad. I can't deny I have scoliosis - it affects me every day. For those who aren't familiar with it, it's a curvature of the spine, that affects the muscular-skeletal system and puts pressure on many parts of the body in many different ways. For me, it's the chronic pain that's the most difficult to cope with. And, if I'm honest, struggling with my negative body image.

But despite a bit of dodgy and a tad un-pc phrasing, I thought Gillian was brave for sharing this 'secret' with the world. I know how difficult it can be to talk about and I haven't got the whole world looking at me! When famous people talk about stuff like this, it does a lot to raise public awareness. It inspired me to share my experiences, as a very unfamous person, living with scoliosis.

I hope this blog will become a way for me to explore and come to terms with having scoliosis and hopefully, of some help to others. So I'm going to aim to write in it at least once a week, maybe more.