My life stories

My scoliosis story #3

SCOLIOSIS STORY #3

A year that fell apart

I already shared the most of my scoliosis story. I shared how I wore a brace for 7 years. And I shared how that brace didn’t keep me from needing a back correcting surgery.
After that you’d think there would be about 6 months of recovery and then the story just goes on. Life moves on. I move on.
And I did. I had five wonderful years of recovering and moving on. I discovered a lot about myself in those five years. As a teenager I started to create my identity – and it didn’t include my scoliosis anymore.
I decided I will be strong, but loving and gentle. I decided I’ll be intense and hardworking but that people will see me smiling instead of complaining. I decided I want to love people and I realized I love writing. I stopped being angry all the time and now I’m patient and silly.
I changed so much that 11 year old me would not recognize me.
So I’ve had a great five years of being okay.

 

Yet while I’m writing this, I’m lying flat on my back on my bed because my back would hurt too much if I was sitting upright.

You see at the beginning of this year (2017) I had fallen behind with my homework so one Saturday morning I sat for five hours straight, trying my hardest to catch up. I finished a week’s worth of homework that day and when I stood up a pain shot through my spine.
I didn’t think much about it. I sat too long, and was stiff. This is a normal thing most teenagers experience at one point or another.
But then the next day my back still hurt. A week later, my back still hurt. Two weeks later I was lying flat on my back practically crying on my mum’s bed, because I had a party to go to but my whole body hurt.
I went to that party and then came back sore.

My mum took me a doctor who gave me anti-inflammation and pain meds. He told me it’ll go away within the next week when the inflammation died down. Needless to say, it helped but the pain never went away.
I went to the doctor who had done my operation for me.
He is one of the top specialist in South Africa.
He looked at my X-rays and told me nothing changed in the bone structure of my back but that lower back pain is part of the scoliosis life style. There isn’t anything he could do about it but he suggested I go to a physiotherapist, drink ant-inflammation pills and a basically just see if it goes away on it’s own.
Again needless to say, it did not go away.

 

I went to my physiotherapist which is not one of my favorite experiences. If you aren’t aware of how physiotherapy works, it is basically a very painful message where a trained expert presses down on your sore muscles until they stop being so sensitive.
Then she gave me exercises and told me to go to Pilates lessons.
This actually did help, and lessened the pain by a lot. But didn’t take it away.

 

I started attending Pilates like suggested and that also seems to help.
It’s an hour lesson, twice a week at 7:30 in the morning with a bunch of amazing ladies between the ages of 60 and 70.
I am the youngest but also probably the most unfit person in the group.
While this often leaves me sore – it also helps a lot.
(I’m also way more flexible now)

 

The problem is that none of these things has made the pain actually go away.
There is still a burning pain on two spots in my spine. My muscles are still more sore than relaxed. Now along with my lower back my neck, shoulders, sides, legs and arms are often sore.
It’s tiring to be busy while hurting so much and at the end of the day I don’t have the energy to continue with my passions such as writing, drawing piano etc. By ten pm all I want to do is nothing, because I’m also too tired to get ready for sleep.
I can’t sit long enough to catch up with my homework and my motivation to finish it has dropped… a lot. Minor stresses lead to pain. Conflict makes me tired to my very bones.
On bad days my legs and arms go numb. I can’t pick up kids anymore even though that used to be my signature move. I can’t work all day anymore and that used to be a big part of my identity.
My friends can’t lean on my shoulders anymore, because my back can barely carry my own weight, never mind theirs. I sometimes can’t pick up the things on my floor without crying and bad posture to me is what running 5k is to most people.

 

It’s hard you see. The life I’ve been creating for myself these past five years has been unraveled. As a 17 year old who has always been maybe just a little too much for people, it’s not a pleasant idea to start living a cautious life.
But it doesn’t seem like there is any treatment that will just make my back problems go away. It might be something that I have to live with for ever now. Then again, perhaps I’ll wake up tomorrow and it won’t bother me ever again.
Back problems is a fickle thing it seems, that you can’t count on to only act in a certain way.

But I can count on myself and who I am.
Five years of living without back pain has made me decide to be strong, loving and gentle. It’s who I am and back pain can’t take that from me.
I’m intense, hardworking, I smile and don’t complain. It’s part of how I act, and even back pain can’t take that from me.
I love people and writing. I’m patient, silly and kind. I don’t anger easily, and again even back pain can’t take that away from me.

I think that this is one of my superpowers that will help me get through a lot in life.
I know who I am. I’m always growing but I’m not about to let myself give in. I know who I want to be and who God wants me to be so I strive towards that.
It’s a weird superpower but if I have to look back on this year, I dare say, it helps a lot.

 

Congratulations you just finished the last part of the story. Told you it was long.

If you liked it, share it and if you have something to say, comment.

I poured out my heart in these three posts. I hope you see it.

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My life stories

My scoliosis story #2

The operation that saved my life.

Just yesterday I shared how it was growing up with a brace. A brace that I had worn for seven years, from the age of five to the age of twelve.
Well the brace was a big part of my life. I wore it with the belief that it would fix my spine after a couple of years – but while it works for some cases of scoliosis, it did not work for me.

 

Which was why, when me and my dad went for one of my regular checkups, when I was 11, the doctor who had been giving me hope the past couple of months looked at me with such sadness and kindness in his eyes that I already knew something was wrong.  
I sat on my dad’s lap staring at the other side of the office as the doctor told me that unfortunately I had hit a growth spurt and it was worsening my back exponentially. He said that I would need a back correcting surgery within the next three months.
If I didn’t go for it, I would have been paralyzed and in a lot more pain than I am now.

 

Aggressive scoliosis can lead to death as the spine forces the body in a way it was never meant to be – and the lungs stop breathing.  
So I sat there on my dad’s lap and stared at a plastic replica of the spine that stood in the corner of the room – and I tried not to cry.
The doctor was nice, he didn’t mean to make me sad, which was why I tried looking brave. But I didn’t manage.  I cried on my dad’s shoulder and we left a little after that.

My dad called to tell my mum while we were on our way back and I just sat quietly. I realized then that the seven years of wearing my brace hadn’t helped much at all. It didn’t fix my back. It might have slowed the scoliosis but ultimately it didn’t do what I wanted it to.

We told my friends and family that week. My friends frowned, some giving me useless comforts. One friend said something inappropriate like “does that mean you will be in pain for months?”
Okay I don’t honestly remember what he said but 11 year old I wrote a really angry diary entry about it.
 
I think I was scared and upset for a couple of days but as the next three months went I just accepted it. It was a surgery I needed – simple as that.
I remember that in those three months I was outside more and jumping on the trampoline and swinging on the swing because I knew I wouldn’t be able to do much after the operation.
I prayed a lot in those three months. I prayed that I would be brave and that I would heal fast.
I prayed that my Christmas and my birthday which both followed the operation wouldn’t be ruined.

 

And then when the three months where over, I went back to the hospital where my doctor worked, except this time I would stay the night, without my parents or my siblings nearby.  
The hospital food was horrible. They gave me a whole block of spinach without any cream mixed in or anything. But nurses where watching and I wanted them to think I was a healthy kid so I ate everything on my plate.
I tried sleeping that night but there was constantly noise. A baby crying. A nurse checking up on me.
When I woke up the next morning to be prepped for the surgery my mum was there and I could see she was afraid. I smiled at her and told her about the dreaded spinach block – what I don’t think I told her was that I wasn’t afraid at all. I was calm.

So they made me sleep and I went in for surgery.
The operation for scoliosis treatment is 6 hours long. They basically pulled my spine straight, and fixed it in place with titanic screws. The doctor did a really good job. He stitched me up perfectly.

The first time I woke up, it was the middle of the night. It was dark except for a couple of green lights. I was scared in that moment but don’t remember if I was in pain. I shut my eyes and fell asleep again.
The next time I woke up the room was lit and my mum was there. Someone tried getting me to eat jelly. I have photos of that moment. I was so pale and my breathing was still being aided by machines and such – but I had my doll and my parents so I was okay.

 

The recovery process started.  

I got a new brace and this really nice lady helped teach me how to walk again. My first steps where shaky and every time I stood up I would feel really ill but I kept practicing.
I moved from the ICU to the kid’s wing and I got my own room. My parents brought me over a paper doll and a balloon flower. I played with my dolls that we had packed for the hospital and I read magicians apprentice by Trudy Canavan.
I walked all the way down stairs to talk to one of my friends who had come to visit me.
I was trying really hard to recover fast but I remember not wanting to eat. Eating made me feel ill, and sitting upright hurt so much that I basically had to lie down to eat – which didn’t work very well.

  • One of the highlights of my recovery in the hospital was that I really needed to go to the bathroom but my mum wasn’t there and I was too shy to call a nurse. So I simply got up , grabbed on to the pole that held my drips and such and walked on my own for the first time. I didn’t wear a brace because I couldn’t put it on myself and when I was done I felt really proud of myself. The nurses freaked out a little though.
  • My second highlight was when my friends sneaked into my hospital room and despite the fact that up to that point I haven’t sat up much, I jumped onto my haunches to great them. I sat on my hospital bed like a little gremlin and for a moment I forgot I was hurt.
    My friends gave me a remote control car which I could play with from my perch on the bed and we made jokes that if we could attach a bell to the car we could confuse the nurses.
    My parents returned to see me sitting like that, laughing. And my mum commented on how when she last saw me I couldn’t even sit. At that moment I was so lost in my joy that I was confused and thought she was talking to one of my friends. I almost asked what was wrong with my friend…

 

After that moment my recovery went better. I went home and my first stable food was KFC and the next was half a hotdog. At that moment in time I was so skinny after a week of living in the hospital that you could see my new metal rods beneath my skin.

Then I practiced walking at home. I learned how to turn myself around in bed without calling a parent. I climbed the three stairs we had at home repeatedly so I could become more stable. I kept practicing my lungs.
Christmas came and I beat everyone from where I was lying on the couch in wii bowling and table tennis.

My birthday came and I built the robot I got as a gift.

Soon I could swing again and after a bunch of months I could start playing on the trampoline again.
I re-taught myself how to do cartwheels and handstands.  I climbed trees again and life just kept on going up until now.

 

 

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The moment I got home from the hospital.

And that’s the thing. There where couple of very hard times in those months and in the past five and half years – Where I freaked out a little and didn’t think I was getting any better. When your body hurts too much to move , it’s easy to lose motivation for getting up.
But life kept going on and I got up again eventually, and my healing period passed. While I had once thought that this operation was going to screw up my life, it didn’t. It actually kind of saved it, and here I am to testify to that.
I can testify that the worst thing I thought I could face, did not defeat me.

 

 

And to be honest, that simple fact gives me hope that I can hold my head high as I live through the rest of my life. If I can keep my footing, during the rough times in life and keep moving forward, then life will do what it does best – it’ll keep moving on.
So even though I’ve been going through another tough year, I am excited to be moving forward with life.

 

I hope you are too.
Write me a comment and if you liked the post please share it.
With lots of love 🙂

My life stories

My scoliosis story #1

Finallyfoundmy newhome!

The Brace

 

Because the friends I had when I was little are different from the friends I have now, not a lot of people in my life know the full story of my back problems.

I currently have daily lower back pain and normally I just tell them that I have a back condition, or I tell them that the scar on my back is because I have metal rods holding my spine straight.

I don’t sit down with anyone and tell them about what growing up with scoliosis was like for me, or how old I was when I had the operation or anything about the dread filled my chest when I realized that my back was giving me problems again.

So consider this me putting my hand on your shoulder and inviting you to hear my story. Get yourself a nice warm cup of hot chocolate and make yourself comfortable. It’s not a short story, but it’s mine.

 

 

It was when my mother dressed me for my third birthday party that she noticed my back was curved into the shape of a loose S.

My family has a history of scoliosis so my parents got me to a doctor soon after the party. The doctor just confirmed my scoliosis and told my parents to come back when I’m older because there’s not much you can do for a three year old.

So when I was five we went back and a couple of days later I went to school with my very first back brace.

This back brace was a plastic mold

that went around my chest and torso. It had thick padding on the inside to keep it from hurting me and Velcro straps that you used to pull it closed behind my back. A part of this brand new brace was a chin rest that forced me to look up. Despite the fact that I really wanted to look down.

 

The brace changed my life a lot and I’m not sure what kind of person I would be without it.

Because it wasn’t until I started wearing my brace that my peers stopped playing with me. Teachers told me to stay aside when a rough game came up. I spent my recess sitting on the class steps.

This sounds really sad and depressing but I don’t really remember how I felt about all these changes. I just remember I was excited that my brace was vivid orange.

If I think back I don’t know if my brace discouraged 5 year old me because the little blond that I was back then was really feisty. She loved superheroes and playing with her big sister. She made friends with all the other kids who were sitting on the class steps – including the girl she called her bff.

 

So my childhood went.

I grew out of my brace almost every year and had to go back for X-rays so I can have a new one made. The brace wasn’t orange after that first one. Most of them where white but I do remember a spider man brace – which despite not being very girly made me feel powerful.

I learned that if you stick to one side with your friend the bullies don’t bother you. So I taught my then bff how to play mermaid and she taught me how to play princess. I taught my “boy” friend how to play superheroes and he taught me how to play spies. I pretended to be monkeys, and pirates, and fairies. And all the time I wore my brace because it did not keep me from being a kid.

When the bullies did find us I would put my hands on my plastic covered hips and tell them if they want to be rude they have to hit me. Stupid little boys where always so confused that they threw a punch at me and hurt their hand on my brace.

It is solid plastic after all.

 

 

My brace was something I grew used to. I learned that if I hook its bottom over the table I could hang there without using my hands. I learned how to put it on myself without my mum or teacher’s help.

In the summers I would beg to take it off because the extra layer made the heat so much worse. In the winter I would pout at having to put it on because it was sooooo cold to touch.

But I wore it for 7 years.

 

My last brace was white and pink and it’s the brace I wore when I left the hospital after my spine correcting surgery. It is the brace I wore when I had to relearn how to walk. How to breathe.

 

Now that it’s been years since I stopped wearing it, I look back on my brace and see how it affected me. And how tiny me ignored everything she noticed.

I ignored the fact that people thought of me as “that kid” instead of as Enette. I ignored the bullies and told myself that I and my bff just didn’t mix well with other kids.

I ignored the fact that grownups pitied me. I ignored the fact that my peers stared at me and how they hardly ever met my eyes.

I only remember being a happy and bubbly kid.

I didn’t seem to realise that the reason I was picked last for games was because people didn’t think I was fast. I sat with my sister’s friends for a whole year and I believed it was because I was just waiting for my bff to come play with me, while really it was because I didn’t have any other friends beside my bff who had finally started making friends for herself.

 

My brace was like being given a label that didn’t fit me. I was marked as the fragile and disabled girl, while my body could do almost everything the other kids could except for looking down.

Beneath my plastic layer I had muscle and scars – and I think if people just looked at my bright green eyes they would have realised that I was just a normal kid. Unfortunately people where always staring at my brace.

 

 

 

But I think my brace was good for me in a sense, and not only because I have great posture now. It was good for me because it taught me to be optimistic. If I just spent all day complaining about my brace I would have wasted my whole childhood – but I didn’t.

I used my brace to connect with the other outsiders. I showed it off on occasion as if it was an iron man suit – and boy, could that crack the ice if people were staring at you. I told people that my brace was cool and I learned how to do tricks despite it.

 

So basically I wore a brace my whole childhood but it didn’t ruin me, because I didn’t let it.

And I hope that just like I moved on with life despite my brace I can now continue on with life despite my back pain. I think it’s really great that I as a kid could stay positive and it gives me hope that me as an almost adult can do the same.

 

So, there it is, the first part of my childhood story.

I know it’s long, but if you’re still paying attention, tell me – what do you think?

Do you think we as possibly grownups can stay positive?

I’d love to write a post on the topic but first you have to give me your opinion.