I've been through a lot but never lost my positive attitude

I was given a steel and leather back brace when I was six years old. It was much heavier and more rigid than the back braces nowadays. I also went to physical therapy and my spine was stretched using a Glisson sling, to loosen and stretch all the ligaments.

It was pretty brutal: The sling was attached beneath my chin, I had weights hanging from my feet, and I had to lie on a slanting board with my feet at the bottom end. That meant my head was pulled upwards, away from my hips, and gravity pulled my feet downwards.

But even though I was given a back brace at such a young age, the scoliosis kept getting worse. I still remember that it was over 100 degrees.

I had my first operation when I was 13, but unfortunately it didn’t go well. My heart stopped beating and they had to use a defibrillator. They cut me out of the plaster cast and resuscitated me. And that affected the outcome of the operation: Three years later, shortly before I started my apprenticeship, it turned out that the scoliosis had got worse and I had shrunk.

I then went to see other doctors. And they told me there was nothing they could do and that I wouldn’t live past the age of 30. But I didn’t give up, and looked for somebody who would operate on me.

When I was 25, I just happened to be watching a health show on TV and heard about an orthopedic surgeon who was offering a new type of scoliosis surgery. He was appalled about the first operation. I really wanted him to operate on me and said, “I don't expect you to turn a used car into a brand new limousine, but surely you can repair it?” He laughed, turned to his assistant and said: “Please x-ray her in every position – lying down, standing up, sitting down, and from every side.” And then he decided he’d do it. Even though there were lots of risks, like damaging my lungs. My scoliosis is quite far up in the chest area of my spine, that was the dangerous bit. My mother was scared and didn’t want me to have the operation. But I was absolutely set on it.

I was given something known as a ‘halo ring’ for my head and was stretched again. The ring looked like a halo and was attached to my head with four screws. I was in a wheelchair. They used ropes to pull my head upwards, with gravity pulling my body down.

In the operation, I had a metal rod fitted and my spine was straightened. They repeated the whole thing six weeks later with a longer metal rod.

So I have quite a lot of metal in my body. And I’ll never let anybody take it away – it’s my savior. The operation really improved the scoliosis. It took me from well over 100 degrees to 90 degrees – to this day.

My severe scoliosis also caused a hump in my ribs. Not only when I bent forwards, also when standing or sitting.

I had a third operation to separate my ribs and remove a small section. That flattened out the curvature and the hump a little. That was the most painful operation of all. The spine operations were nowhere near as painful.

When I had the first operation at the age of 13, I had to stay in hospital for a year. And even though I missed classes, I managed to get my school-leaving certificate without repeating a year. I later went to commercial college and got my diploma and then qualified as a civil servant. I now work as an administrative officer in that capacity.

I have a disability card because of my scoliosis. I never had any problems with classmates, neither at school nor at college.

I've been through a lot but never lost my positive attitude. My grandparents always treated me the same as other children, and never pitied me.

I went roller-skating, sledding and rode a scooter with the steel brace. I was quite fearless. We couldn't afford a bike, but I would have ridden one if I could.

There was one key moment in my life when I was seven years old. My grandma used to take me to the Café Kranzler in Berlin once a month. Just when we were about to go in, a very well-dressed lady in a tailored mink coat came out and looked me up and down. My grandma then said to me, “Are you going to put up with that?”

I turned around and looked the lady up and down in exactly the same way. She looked very embarrassed and quickly walked off. That really helped me. Every time somebody stared at me after that, I stared right back. And stayed confident.

I had a hard time between the ages of 15 and 20. I was very short in height, much shorter than average. Lots of activities were difficult, even just things like going dancing with other people my age. But my friend still took me with her everywhere she went.

All of my friends and acquaintances always accepted me as I was. But strangers did sometimes exclude me – adults more than children. Puberty and young adulthood were very difficult phases for me. I didn’t let it show, though.

I didn’t have any problems at school, quite the opposite. My classmates even stood up for me if other kids teased me. I grew up in a working class area of Berlin. Things could get pretty rough there sometimes.

The only thing I regret is that I wasn’t allowed to do school sports. Back then, it was thought to be too dangerous for people like me. I now know that’s nonsense, it would have been good for me.

I met my husband in hospital after the third operation, when I was 30 years old. He worked there as a paramedic. We got engaged within four weeks, right there in the hospital.

Even in the hospital, we tried to live our lives and enjoy things as best we could. Our engagement party was in the lounge of the ward. The doctors were also invited!

We then got married soon afterwards, and three years later our son was born. But by C-section, because my whole spine is completely rigid, apart from around my fifth lumbar vertebra. A normal birth wouldn’t have been possible at all. I managed well with my son and daily life. I really enjoyed it.

The scoliosis was never a problem for my husband. After all, we had met in rather unusual circumstances. We've got on with and loved each other for 41 years now.

I tried to be as mobile as possible in day-to-day life. I used to do a lot of skiing. It’s just my stamina that isn’t great, because my lungs can’t expand properly. I manage well nowadays and can cope with daily life. But I’m 74 now – it’s normal to have restrictions at my age.

I don't limit myself and I can move around completely normally. That’s important, even if you have a metal rod in your body. Lots of people think that they won't be able to bend over anymore after the operation, so they don’t even try. But that’s all in their head. You can bend down at the waist instead. And nobody notices that I can’t arch my back.

You should tell yourself, “I have a completely normal spine.” I know that's not the case, but it helps. I can then use my full potential.

I started going to a support group about 25 years ago. My doctor was one of the people who started up the group and he asked if I could help.

It’s clear what the support group has given me: lots of friendships, a chance to talk to others in similar situations, good training courses, and some joint rehabilitation experiences. You're not alone there.

My impression nowadays is that parents tend to make children feel insecure. They accidentally give them the feeling that scoliosis is something awful. They often project their fears onto their children.

I think my mother and my grandparents probably had exactly the same concerns, but they didn’t project them onto me. Self-confidence is important. I always told myself that if somebody doesn’t like me the way I am, they wouldn’t like me any other way either.

All I can say is, it’s easier if you accept the scoliosis. Tell yourself that it's a part of you now, but you'll try to make it better. And then live with it, content in the knowledge that you’ve done all you can.

The way I see it, scoliosis isn't a disease, it’s a condition. I accept it and make the most of life with it.