As I mentioned in my last post, as a teenager I was always wondering, if any boy would one day want me - As I'm sure most girls do. At this point I'd like to paint for you a picture of me as a teenager. Right, so there's the disability, crutches, leg dragging and right arm dangling, but that's not all! I had to wear a leg brace that would only fit in an army boot like shoe, not pretty with a dress, or anything really. I had braces on my very skew teeth, bad skin most days and very oily hair. God made sure I'd remain virgin a long, long time. Looking back at photographs though, I realize it wasn't as bad as it felt. I was super skinny and remember all through high school trying get my weight up to 40kgs.
All my friends had already had boyfriends and been kissed (to the guys, hang on in here this isn't going to turn in to a teen novel), but I wondered, when would it happen for me? I had braces so I had to make sure anyone I kissed didn't. We all knew the horror stories of two poor kids getting their braces stuck together during a passionate kiss! Nooooooooo that could not be me.
So I did get my first kiss not long after turning fifteen! But it was not like in the teen love novels I was reading. It was so gross and the guy was so drunk he leaned forward after kissing me and threw up all over the place. I still remember him waving goodbye to me with a spit string still dangling out the corner on his mouth. Surely this wasn't my prince charming! Looking back, I just wish I realized how precious I was, and that there are amazing men in this big world. Luckily that first romantic experience, convinced me that drunken parties were not the answer.
Besides I was also very concerned about what I would do one day, would I study further, or get a job, but seriously what job could I do? At one stage I wanted to look in to being a nursery school teacher, but my guidance teacher convinced me that I wouldn't manage. How sad is that? Unfortunately, that would happen a lot to me. Fortunately that was an area of rebellion in my life.
Sometime had passed since I seen a doctor and mother had heard of an amazing guy who did amazing things with muscles. So we went to see this amazing Dr Phleming. He was very good and came up with a plan for me to get use out of my right arm and hand. What he did was, first set my wrist at an angle that made using my fingers easier, my hand used to twist in to a spastic angle making finger movement impossible. He then set my elbow at an angle so it didn't lock straight. Then, the most complicated thing was, he removed my chest muscle (pectoral major) and rolled it up, swung it over to the bicep muscle and, attached it to the elbow bone. The pectoral muscle now functioned like the bicep.(clever hey?) Never mind that I lost my right breast in the process, but nothing that a wad of cotton wool couldn't fix (the wonderbra was a few years away still). This was very painful operation it took 8 hours, afterwhich I was in agony! There was also a threat that the muscle would be rejected, so a piece of skin was left attached to the muscle, and we had to watch that island of skin in case it turned green. Green was BAD! Yay - the muscle took and a few painful weeks later my staples, which made me look like a railway line, were removed. The smelly and very itchy cast was also removed from my wrist and I could bath and wash my armpit. Speaking of armpit, what we also noticed was that my armpit was now on my shoulder. I had to shave my shoulder! It was still worth it though as I regained some use of my right arm, sadly I didn't exercise very much so progress stopped.
I completed high school with an exemption, not that I was going to university. I sold myself short there, I believed that I wouldn't have managed. So I enrolled at Springs College to do my N6 in marketing. Before the term started I went for plastic surgery to place my armpit back where it belonged, the surgeon also cut away scar tissue and dum de dum, I got a right breast. Yay - braces off, skin cleared, oily hair sorted, right arm not dangling as much, and cotton wool wad thrown away, I started off a college girl. Oh hey and I qualified for a disability pension, R420-00 a month. The world was my oyster!
Friday, April 8, 2011
Thursday, March 31, 2011
I just wanna be normal
So now had a social life, I went to youth group on a Friday night and church on a Sunday morning and evening. I loved it, though there was a lot I didn't understand but, I was learning slowing. I felt like I belonged somewhere. I think the biggest change was in my heart. I had a peace about everything, maybe I would walk normally one day, maybe not. It didn't matter to me, I wanted to be normal but it didn't bother me any-more. I was content to be me and figure out with God what would happen next. I was just so sick of all the drama and frustration, I wanted to accept who I was and move on. I would never be dancer or an athlete. It didn't matter, there was still loads I could do, like... well I wasn't really sure what disabled people did for a living, but like I mentioned, it didn't matter really, did it? I just remember wanting to stop seeing doctors who had no answers, I wanted to stop physio that was just frustrating (even though looking back the results were remarkable). My parents gave in eventually and I was left to live my life struggle free, well at least with a few less struggles.
The freak show
I was happy to be me. If God wants to heal me that's great, but I'm certainly not running off to see the latest crazed evangelist. I had experienced that too many times already, I was not going to be the subject of anybodies freak show!
Ah man when I think back, I must've had an experience with every freak in a 100km radius. Everyone had a different answer but it was always weird. I had people making me sit on magnetic chairs, yes, you think a magnetic bracelet will heal you, how about a whole chair! I just remember being hyperactive for the next few days, and unable to focus! I had pieces of my hair sent to China, then we eagerly awaited a package that would contain a white powder for me drink. Thank the Lord no powder ever arrived! I had three men come to the house one day. They stood around me while they summoned the spirits - they called masked friends, to release my trapped body! On leaving they told my grandmother they felt the spirit of an old man in our house, she was overjoyed my grandfather had died of cancer years earlier. Well me, not so overjoyed!
Yes I just wanted to blend, less freaky and more normal was what I was looking for!
I became teenager and by that time I was walking with a crutch, just one as my right arm wasn't strong enough. This was great if I stood still, I didn't look disabled, maybe I had injured myself doing sport, or maybe an accident, I was more normal than ever. My mother had a friend who owned the local gym, she suggested I come in during the day when they were quiet and try exercising with their help. This I was up for. When I got there and realized my personal trainer was by far the hottest guy in town, I was all-the-more inspired to work hard at my body again! So the music pumped, and I exercised on machines that normal people used. I was just another teenager working out at the gym! I got so much stronger and developed a slight 6 pack. I really started liking myself and thinking maybe some boy could possibly like me too!
I was still regularly attending church, I loved God, He was the person I could talk to and knew He had a plan for my life. I just hoped it included a husband and even children one day. Could someone over look my disablility? I thought I'd better work on being a really nice person just in case!
The freak show
I was happy to be me. If God wants to heal me that's great, but I'm certainly not running off to see the latest crazed evangelist. I had experienced that too many times already, I was not going to be the subject of anybodies freak show!
Ah man when I think back, I must've had an experience with every freak in a 100km radius. Everyone had a different answer but it was always weird. I had people making me sit on magnetic chairs, yes, you think a magnetic bracelet will heal you, how about a whole chair! I just remember being hyperactive for the next few days, and unable to focus! I had pieces of my hair sent to China, then we eagerly awaited a package that would contain a white powder for me drink. Thank the Lord no powder ever arrived! I had three men come to the house one day. They stood around me while they summoned the spirits - they called masked friends, to release my trapped body! On leaving they told my grandmother they felt the spirit of an old man in our house, she was overjoyed my grandfather had died of cancer years earlier. Well me, not so overjoyed!
Yes I just wanted to blend, less freaky and more normal was what I was looking for!
I became teenager and by that time I was walking with a crutch, just one as my right arm wasn't strong enough. This was great if I stood still, I didn't look disabled, maybe I had injured myself doing sport, or maybe an accident, I was more normal than ever. My mother had a friend who owned the local gym, she suggested I come in during the day when they were quiet and try exercising with their help. This I was up for. When I got there and realized my personal trainer was by far the hottest guy in town, I was all-the-more inspired to work hard at my body again! So the music pumped, and I exercised on machines that normal people used. I was just another teenager working out at the gym! I got so much stronger and developed a slight 6 pack. I really started liking myself and thinking maybe some boy could possibly like me too!
I was still regularly attending church, I loved God, He was the person I could talk to and knew He had a plan for my life. I just hoped it included a husband and even children one day. Could someone over look my disablility? I thought I'd better work on being a really nice person just in case!
Wednesday, March 16, 2011
A Life less Ordinary
Life slowed down somewhat as we settled in to it. It was good for my family; my siblings had been neglected a bit with me getting loads of attention.
We started discovering that having a disability had its advantages. My brothers went to the army (it was still compulsory for men to do 2 years of army training after school), I was used as an excuse to get my brother out of an awful camp where he was treated badly, and to a camp near home(for the not so bright) where he could do admin. We also discovered, to my delight, that I got into movies for free! There was a catch though, the cinema was on the second floor and there were no lifts, only escalators (bunch of jerks!). We made a plan, I was carried up the escalators and the wheelchair dragged up! We also found a very dodgy goods lift at the back of the mall, this was scary but so worth it! Well I soon started paying for tickets and then I get to sit where I wanted. If we didn't get to the cinema early I'd be parked at the back next to a snogging couple and my friends would be down somewhere else...not good! I remember going to see an American soap star from a show called ‘Loving’, who had come to South Africa. He smiled at me and said “hello”! Wow being disabled was the best.
I did get some special treatment at school. I often got out of doing homework when we had to be in Johannesburg for tests and Dr. Appointments; we’d get home late and exhausted. I did not get out of physiotherapy (with an amazingly sweet lady), who became the thorn in my side. I started calling her my physio-terrorist! Shame this was my bad attitude, I misinterpreted her persistence to my recovery as her trying to purposely frustrate me. Oh man that exercise ball! I never want see one of those again! Balancing precariously trying with all my might to kneel with only a rolling ball giving stability. She would then bump me, it frustrated me, and I just couldn’t cope! I eventually as a young teenager convinced my parents to let me stop physio, I think I simply wore them down. They realized that I had to want it for myself.
By that stage I was no longer walking with the walker and had upgraded to a crutch. My balance had improved and I could even take a few steps unaided, life was good. I felt in control and had figured out how to make life work for me. My right arm was still mostly paralyzed and so my mouth become another arm, I carried things in mouth, opened things (resulting in a few chipped teeth), and could even carry a full bag of groceries in my mouth. It really is amazing how one can adapt when required to. I had slipped in to a comfort zone, and found no need to exercise. It is funny though I remember before the paralysis, lying on grass one day pretending that I couldn’t move and thinking if I couldn’t move my body, I’d just concentrate really hard and force my muscles to move. Guess it just wasn’t that easy.
A change inside my heart
I had a really good family friend called Rory, I loved hanging out with him, he treated me as if nothing had happened. One Friday night he invited me to his youth group, I had been to going to church as a child but I never really understood what it was all about. Due to the fact that I now had no social life, Friday nights were free, so I was excited to be getting out. Little did I know how important this evening out would be. We had a great time. I don’t think I was actually old enough to be going to the youth group. There was a live band singing Jesus songs, but it was fast and beaty - not how I imagined church music. The youth leader had a fun message and I remember some kids doing a skit that made us laugh. The leader than started asking if anyone wanted to make a commitment to God, and explained about Jesus dying on the cross, something I knew about but never thought about. I remember wanting to put my hand up but feeling so shy, my family weren’t nutty church people, and I certainly didn’t want to become one! Rory said he’d go up with me so up we went, me walking slowly holding up everyone behind me who was eager to get to the front. When I got to the front the lights were bright and I felt all eyes on me, but Rory was with me telling this was good. The leader prayed for us and I was given a booklet to read. I didn’t think a whole lot had changed, I mean I was a really good person, I liked being kind and I hated being in trouble. But it was like a little bubble of joy burst in my heart, just a little one. I wouldn’t realize until later in life how important that decision was, it was what would guide me in making good decisions regarding drinking and boys and working hard to help others. But most of all I didn’t know how lonely I would be as a teenager, or how devastated I would be watching my mother die, and that this commitment to God would maintain that growing bubble of joy.
We started discovering that having a disability had its advantages. My brothers went to the army (it was still compulsory for men to do 2 years of army training after school), I was used as an excuse to get my brother out of an awful camp where he was treated badly, and to a camp near home(for the not so bright) where he could do admin. We also discovered, to my delight, that I got into movies for free! There was a catch though, the cinema was on the second floor and there were no lifts, only escalators (bunch of jerks!). We made a plan, I was carried up the escalators and the wheelchair dragged up! We also found a very dodgy goods lift at the back of the mall, this was scary but so worth it! Well I soon started paying for tickets and then I get to sit where I wanted. If we didn't get to the cinema early I'd be parked at the back next to a snogging couple and my friends would be down somewhere else...not good! I remember going to see an American soap star from a show called ‘Loving’, who had come to South Africa. He smiled at me and said “hello”! Wow being disabled was the best.
I did get some special treatment at school. I often got out of doing homework when we had to be in Johannesburg for tests and Dr. Appointments; we’d get home late and exhausted. I did not get out of physiotherapy (with an amazingly sweet lady), who became the thorn in my side. I started calling her my physio-terrorist! Shame this was my bad attitude, I misinterpreted her persistence to my recovery as her trying to purposely frustrate me. Oh man that exercise ball! I never want see one of those again! Balancing precariously trying with all my might to kneel with only a rolling ball giving stability. She would then bump me, it frustrated me, and I just couldn’t cope! I eventually as a young teenager convinced my parents to let me stop physio, I think I simply wore them down. They realized that I had to want it for myself.
By that stage I was no longer walking with the walker and had upgraded to a crutch. My balance had improved and I could even take a few steps unaided, life was good. I felt in control and had figured out how to make life work for me. My right arm was still mostly paralyzed and so my mouth become another arm, I carried things in mouth, opened things (resulting in a few chipped teeth), and could even carry a full bag of groceries in my mouth. It really is amazing how one can adapt when required to. I had slipped in to a comfort zone, and found no need to exercise. It is funny though I remember before the paralysis, lying on grass one day pretending that I couldn’t move and thinking if I couldn’t move my body, I’d just concentrate really hard and force my muscles to move. Guess it just wasn’t that easy.
A change inside my heart
I had a really good family friend called Rory, I loved hanging out with him, he treated me as if nothing had happened. One Friday night he invited me to his youth group, I had been to going to church as a child but I never really understood what it was all about. Due to the fact that I now had no social life, Friday nights were free, so I was excited to be getting out. Little did I know how important this evening out would be. We had a great time. I don’t think I was actually old enough to be going to the youth group. There was a live band singing Jesus songs, but it was fast and beaty - not how I imagined church music. The youth leader had a fun message and I remember some kids doing a skit that made us laugh. The leader than started asking if anyone wanted to make a commitment to God, and explained about Jesus dying on the cross, something I knew about but never thought about. I remember wanting to put my hand up but feeling so shy, my family weren’t nutty church people, and I certainly didn’t want to become one! Rory said he’d go up with me so up we went, me walking slowly holding up everyone behind me who was eager to get to the front. When I got to the front the lights were bright and I felt all eyes on me, but Rory was with me telling this was good. The leader prayed for us and I was given a booklet to read. I didn’t think a whole lot had changed, I mean I was a really good person, I liked being kind and I hated being in trouble. But it was like a little bubble of joy burst in my heart, just a little one. I wouldn’t realize until later in life how important that decision was, it was what would guide me in making good decisions regarding drinking and boys and working hard to help others. But most of all I didn’t know how lonely I would be as a teenager, or how devastated I would be watching my mother die, and that this commitment to God would maintain that growing bubble of joy.
Thursday, March 10, 2011
One step, two step....
Getting used to my new life took time, but with the amazing people in my life we took one day at time.
Our ballet class was doing a 'Snow White and the Seven Dwarfs' production, I was supposed to be sneezy, but I now had to be replaced. I really didn't like the poor girl who took 'my' part, my sister didn't like her either. Thankfully no-one else disliked her because of me and I think she was happy and unaware of our issues, I do remember watching the production and feeling seriously left out. My life became just that, watching a lot of activities and feeling very left out. It's a good thing that I love talking so much, that became my new pastime, oh yes and watch TV.
What a miraculous invention, I could escape and become someone else. My struggles and frustrations can fade for awhile. I know it's not green these days, but I still love TV so much.
Another thing we did a lot, was seeing Dr's and specialists, long drives even longer waits in dr's rooms. The MRI scan had just come out so naturally we had to do that too, we were certain it held all the answers. Did it? Naa! Everything was normal, except for the fact that I could hardly move! So we kept seeing the various doctors who gave us no answers , just "hey, well done you're improving!" I remember asking my neurologist when I could join the netball team again, I was getting ticked at watching my position being badly played!
He laughed and said "you know you're never gonna walk again!" The thing is I didn't know, no adult had ever mentioned to me that this would be permanent. What the adults took for granted was not what I a 10 yr old took for granted! I was crushed, I cried and cried. My mother took me aside looked me in the eyes and said, "Tania he doesn't even know what happened to you, you've improved so much without his help or advice. Don't listen to him, he doesn't know what he's talking about!" That made sense to me.
We continued with physio and within months I could, once helped in to a standing position..stand, on my own, without anyone touching me. Only for a few seconds at first, but that was all needed to stay encouraged. What struck me the most was the view from a standing position, life looks different from up there!
The moment arrived! One morning while my mother was dressing me, I was standing taking in the view, I felt it the urge to take a step. It burned in my legs, I asked my mom if I could try, she very nervously said okay.
My left leg moved forward with ease and planted on the ground, I had just taken my very first step, for the second time in my life. I wasn't done though, I pulled my right leg forward, shame she struggled a bit. My right leg is very much weaker than the left, so she dragged forward pulling me off balance and I came crashing down in to my mother's arms. It didn't matter, I had taken two steps, which meant I could walk.
My parents bought me a walker, we put wheels on the front so I could push it like a trolley. The next time we went to see my neurologist I walked in with my walker, he recognized me instantly. The waiting room became ciaos as the Dr was running up and down with his secretary clicking her pen nervously behind him. She came past us and offered an explanation, "he's trying hurry so he can see you, he's just so excited!" He really was. When you're trying to prove someone wrong, and they get excited that you proved them wrong, well that's just the bomb!
Our ballet class was doing a 'Snow White and the Seven Dwarfs' production, I was supposed to be sneezy, but I now had to be replaced. I really didn't like the poor girl who took 'my' part, my sister didn't like her either. Thankfully no-one else disliked her because of me and I think she was happy and unaware of our issues, I do remember watching the production and feeling seriously left out. My life became just that, watching a lot of activities and feeling very left out. It's a good thing that I love talking so much, that became my new pastime, oh yes and watch TV.
What a miraculous invention, I could escape and become someone else. My struggles and frustrations can fade for awhile. I know it's not green these days, but I still love TV so much.
Another thing we did a lot, was seeing Dr's and specialists, long drives even longer waits in dr's rooms. The MRI scan had just come out so naturally we had to do that too, we were certain it held all the answers. Did it? Naa! Everything was normal, except for the fact that I could hardly move! So we kept seeing the various doctors who gave us no answers , just "hey, well done you're improving!" I remember asking my neurologist when I could join the netball team again, I was getting ticked at watching my position being badly played!
He laughed and said "you know you're never gonna walk again!" The thing is I didn't know, no adult had ever mentioned to me that this would be permanent. What the adults took for granted was not what I a 10 yr old took for granted! I was crushed, I cried and cried. My mother took me aside looked me in the eyes and said, "Tania he doesn't even know what happened to you, you've improved so much without his help or advice. Don't listen to him, he doesn't know what he's talking about!" That made sense to me.
We continued with physio and within months I could, once helped in to a standing position..stand, on my own, without anyone touching me. Only for a few seconds at first, but that was all needed to stay encouraged. What struck me the most was the view from a standing position, life looks different from up there!
The moment arrived! One morning while my mother was dressing me, I was standing taking in the view, I felt it the urge to take a step. It burned in my legs, I asked my mom if I could try, she very nervously said okay.
My left leg moved forward with ease and planted on the ground, I had just taken my very first step, for the second time in my life. I wasn't done though, I pulled my right leg forward, shame she struggled a bit. My right leg is very much weaker than the left, so she dragged forward pulling me off balance and I came crashing down in to my mother's arms. It didn't matter, I had taken two steps, which meant I could walk.
My parents bought me a walker, we put wheels on the front so I could push it like a trolley. The next time we went to see my neurologist I walked in with my walker, he recognized me instantly. The waiting room became ciaos as the Dr was running up and down with his secretary clicking her pen nervously behind him. She came past us and offered an explanation, "he's trying hurry so he can see you, he's just so excited!" He really was. When you're trying to prove someone wrong, and they get excited that you proved them wrong, well that's just the bomb!
Wednesday, March 2, 2011
Back to school is cool!
So the hunt for an appropriate place for me to get an education begins. Back in 1988 there weren't a ton of options...there was a school near our town for 'special' kids. I had to face up to the fact that I was now a 'special' child with 'special' needs, being forced to leave my friends and school did not make me feel 'special'! We decided to go on a day visit to see what the school was like. I remember it being better than what I had expected, for some reason I had the picture of the orphanage from the film 'Annie' in my mind! It was really lovely, they had awesome computer rooms, craft rooms, the property was beautiful. The teachers we met were very kind. I remember so clearly being wheeled into one of the computer rooms and to my horror seeing a boy about my age whose arms were terribly spastic. He had a stick thingy strapped to his head and was head butting the keyboard! At 10 years old I didn't understand and wanted to laugh.....until I realized it was because he couldn't use his hands and remembered that I couldn't use my hand properly yet either. I looked at my Mom (with horror evident on my face) and asked if I would have to do that, she said "no we're gonna exercise your hands and you'll be able to write soon". Even though the school was lovely I just couldn't get my head around the fact that all the kids and all my new friends would be disabled, it just didn't feel right! I never felt like I would fit in, I had only been disabled for 4 months and deep down I didn't see myself as disabled. Seeing the other students my age disabled, some really badly, made me feel awful. Man, I was so young and just couldn't get my head around the fact that this was 'me'. I was the same as 'those' kids that looked so different and had to be sent somewhere else so the normal kids didn't have to be friends with them!
It was just kind of decided that that was where I would go to school, there was one problem though, my parents hadn't told me. The school was not only for physically disabled kids but mentally disabled kids too, which meant the level of education was very low! We were out of options, there was a boarding school in Johannesburg but my mother was very anti boarding facility (convinced I'd be abused) and it was too far to drive daily.
Then enters Mr Holland! Mr Holland was very good family friend (placed by God) and just happened to be the principal of my former primary school (Selcourt Primary). Well Mr Holland called my parents and he was concerned about the level of education at the other school, and thought it was a good for idea for us to try sending me back to Selcourt Primary. What? Was I hearing my parents correctly, I was going back to school, to my friends, where my sister was, to all things 'normal'. Hurray! Nothing was certain. We'd just try. I knew it would work!
Going back was so easy I wasn't nervous, the teachers were great. I had an amazing man as my teacher Mr Barton! He looked after me so well - now there's someone I need to try find and thank! You'd think I would have been worried about being teased but I don't remember anyone being anything but kind. My friends picked up where we left off, (I stand corrected but I think we had some chats about disability in class!) everyone of my class mates just wanted to help me. Thank goodness I wasn't 'special' anymore!
Thinking back to this time really has been interesting, you know I wouldn't be the person I am, if I hadn't been given the opportunity to go back to 'normal' school. I still don't see myself as disabled (which is why I don't do long length mirrors) and don't act disabled 'cause basically I think I'm still in denial. Yay for denial!!!
Tuesday, February 22, 2011
The whole new ball game!
My home coming was too exciting! I missed my life and couldn't wait to get back to school, I was so bored and in desperate need of stimulation. Looking back now as an adult and having spoken to my sister (Natasha) about this time, I realize just how hard it had been on my family. They suffered too, not having my mom around. Tash was living with a friend, and was so scared about everything. My home coming was a great relief to everyone in so many ways
We realized very soon that life wasn't going to just pick up and carry on, so much had changed and so much had to still change. First thing I needed were sunglasses I remember my eyes aching from the glare. I wasn't used to direct sunlight. We got me the latest mirror glasses, my brother said I looked like a fly! Much better!
It was early December 1987 when I was released from hospital. So what was first thing we did as a family? Chill at home and give me time to re-adjust? Nope, we packed up and went on holiday to Durban! We must have been crazy, but that's what I love about my family!
In Durban
We had a holiday flat, well actually a block of flats owned by family members and close friends. It was lovely to be with people that were so worried about me. I remember feeling sad that the stairs I used to race up and down, I was now being carried up and down. The seaside was our play ground we spent hours digging in the sand and building sandcastles, swimming in the sea. I loved every minute. Now though, the beach was a place of torture, the sand was hard to lie on, I couldn't swim any-more, I couldn't build sandcastles, and it was too hot for me even under an umbrella. I had to get to know the new me and find out what I enjoyed doing!
Another new experience was going out in to public for the first time in a wheelchair, strapped into wheelchair. It was exhausting just going out for even a short time, every muscle ached afterwards. The worst I think were the stares, people stared at me and it upset so much. I was only 10 years old and thought I must have looked like a freak. People often fell over themselves they were staring so much. My sister used to get mad and give them a dirty look, like only she could. Even with the rude stares going out for a ride in my wheelchair, in Durban was fun. The holiday atmosphere was tangible and if I was lucky we could get an ice-cream. Yes I enjoyed that very much!
More Changes
Back home we had a lot to do, I needed a physio therapist to begin with. We found a lovely lady who would come to my house, I loved physio when I was in hospital, it was time I could spend talking with someone, it was stimulating. At that stage I couldn't move anything so physio was more like a relaxing massage, but things changed very soon. Physio was now very hard, my muscles ached and I got so frustrated looking at my body, gritting my teeth, willing the muscles to move but getting nothing in response. It had only been two months after all, the reality soon hit, this was going take a long time! Even though it didn't feel like it I did actually progress very quickly, by the time we got back from holiday, I didn't need to be strapped into the wheelchair, I could hold myself up now. With my left hand I could write and colour in pictures. It felt amazing to colour in, it was like a whole new experience. Colouring in was stimulating and creative, something I could physically do by myself, it's such simple things that I missed doing.
The time came for my parents to break the news to me that I wouldn't be able to go back to school with my sister and be with my friends. We needed to find a special school where the kids were like me, I don't remember being upset, I think I was just scared. So much had changed and now a really huge change, but my parents were and still are such amazingly strong and positive people. They were so encouraging and helped me to face the facts and in the end I was actually excited. I remember so clearly my dad talking to me and I knew whatever happened it would be okay, I would be okay. I had a family that loved and accepted the new me and all the challenges. I was talking to my sister and we were remembering this time and she reminded me that through everything we never saw our parents discouraged, we never saw them even look like they were taking strain. They were so strong and happy, always helping me laugh at myself and guiding me to love myself. I hope I can carry on with this attitude and pass it on to my little girl. I think I'll call my dad and tell him how much I love him, I wish my mother was around so I could give her an extra tight hug!
We realized very soon that life wasn't going to just pick up and carry on, so much had changed and so much had to still change. First thing I needed were sunglasses I remember my eyes aching from the glare. I wasn't used to direct sunlight. We got me the latest mirror glasses, my brother said I looked like a fly! Much better!
It was early December 1987 when I was released from hospital. So what was first thing we did as a family? Chill at home and give me time to re-adjust? Nope, we packed up and went on holiday to Durban! We must have been crazy, but that's what I love about my family!
In Durban
We had a holiday flat, well actually a block of flats owned by family members and close friends. It was lovely to be with people that were so worried about me. I remember feeling sad that the stairs I used to race up and down, I was now being carried up and down. The seaside was our play ground we spent hours digging in the sand and building sandcastles, swimming in the sea. I loved every minute. Now though, the beach was a place of torture, the sand was hard to lie on, I couldn't swim any-more, I couldn't build sandcastles, and it was too hot for me even under an umbrella. I had to get to know the new me and find out what I enjoyed doing!
Another new experience was going out in to public for the first time in a wheelchair, strapped into wheelchair. It was exhausting just going out for even a short time, every muscle ached afterwards. The worst I think were the stares, people stared at me and it upset so much. I was only 10 years old and thought I must have looked like a freak. People often fell over themselves they were staring so much. My sister used to get mad and give them a dirty look, like only she could. Even with the rude stares going out for a ride in my wheelchair, in Durban was fun. The holiday atmosphere was tangible and if I was lucky we could get an ice-cream. Yes I enjoyed that very much!
More Changes
Back home we had a lot to do, I needed a physio therapist to begin with. We found a lovely lady who would come to my house, I loved physio when I was in hospital, it was time I could spend talking with someone, it was stimulating. At that stage I couldn't move anything so physio was more like a relaxing massage, but things changed very soon. Physio was now very hard, my muscles ached and I got so frustrated looking at my body, gritting my teeth, willing the muscles to move but getting nothing in response. It had only been two months after all, the reality soon hit, this was going take a long time! Even though it didn't feel like it I did actually progress very quickly, by the time we got back from holiday, I didn't need to be strapped into the wheelchair, I could hold myself up now. With my left hand I could write and colour in pictures. It felt amazing to colour in, it was like a whole new experience. Colouring in was stimulating and creative, something I could physically do by myself, it's such simple things that I missed doing.
The time came for my parents to break the news to me that I wouldn't be able to go back to school with my sister and be with my friends. We needed to find a special school where the kids were like me, I don't remember being upset, I think I was just scared. So much had changed and now a really huge change, but my parents were and still are such amazingly strong and positive people. They were so encouraging and helped me to face the facts and in the end I was actually excited. I remember so clearly my dad talking to me and I knew whatever happened it would be okay, I would be okay. I had a family that loved and accepted the new me and all the challenges. I was talking to my sister and we were remembering this time and she reminded me that through everything we never saw our parents discouraged, we never saw them even look like they were taking strain. They were so strong and happy, always helping me laugh at myself and guiding me to love myself. I hope I can carry on with this attitude and pass it on to my little girl. I think I'll call my dad and tell him how much I love him, I wish my mother was around so I could give her an extra tight hug!
Thursday, January 27, 2011
At the hospital
I don't remember the drive to Jo'burg but it was before the highway was built so it took a good hour to get there. I remember endless tests and doctors looking very confused as all the tests came back negative! They would prick me with needles to assess where the paralysis was and how fast it was moving. The doctor would prick my foot and I couldn't feel it, then prick my ankle and I could feel that..then come back in a 1/2 hour and pick my ankle and I couldn't feel it and pick my calf and I could feel that. I was picked every 1/2 hour and my poor mom just helplessly watched the paralysis moving up. My mom was told to watch my chest move up and down as I breathe and if it stopped she had to call them. (surely there was a more humane way of monitoring that!!) It was longest night of her life!
The doctors had ventilators ready as they expected the paralysis to hit my lungs. I remember waking in the morning and feeling like someone was sitting on my chest. I was moved to ICU. By then the paralysis seemed to have run it's course, leaving me completely paralyzed from the shoulders down. My breathing was shallow but I was managing without a ventilator, which made me very happy as I was told I couldn't talk attached to a ventilator! Talking was and is still my favorite hobby!
Long Nights in ICU
So there I was completely paralyzed, no-body could tell me what had happened and what was still to happen every test still came back negative. My family put on happy faces and tried hide how scared they were! It worked really well I was not at all aware of how scary the situation was. I remember the hospital psychologist coming to talk to me and saying.."you must be so so scared!" and I really wasn't sure why she would say that. I mean of course I would walk again and play sport..hopefully I could drop ballet. My biggest concern was that someone would take my place in the netball squad, while I was recovering.
The nights were endless and agonizing. I lay in ICU not able to sleep a wink, I made up songs to the beeps of the other patients vital monitors! The smell of burned toast was sickening at 12 o' clock every night when the night staff had their 'lunch'.
The strange thing about this paralysis was that even though I couldn't move at all my skin was hyper sensitive and itches drove me almost insane, remembering I was unable to lift a hand to scratch. I became an expert at explaining exactly where the spot was on my face. Let me tell you there is a the smallest spot of skin between the ridge of ones nose and the corner of one eye..that is by far the itchiest of all itchy spots in the entire body. How do I know this? That spot my dear friends was itchy 24 hours a day and no-one could find that spot. Don't talk to me about frustration! So being the creative person I am, I came up with a solution I figured out how to blow out my mouth in such a way that a strong gust of wind would hit the spot. Okay so close your mouth tight make a tiny opening by parting your lips at one side and blow hard, moving your mouth from left to right until you hit and conquer the queen of itchiness!
The creases on the sheets from shoddy ironing felt like razor blades under my sensitive skin. I was told there was nothing they could do about that. The nurses thought I was crazy
My Days
The days went by a lot faster with family and friends visiting and yes lets forget the constant tests being run that made life so fun. We'd start off the morning with a lumbar punch before breakfast then I'd have to drink 25 quarterzone tablets that I couldn't swallow too well. My mom would crush it and mix it with peach Tropica to hide the taste...did it work? NOOOOOOOOOO! To this day I start praying in tongues when I pass the Tropica section at the supermarket! By far the most fun were the procedures. By this stage Dr's suspected I had contracted Guillain barre. They started me on an exciting new procedure called Plasmapheresis Basically they drained blood out of my body replaced the plasma cells with donor plasma and then very kindly put it back, leaving me indescribably ill. I needed 10 sessions but at 5 sessions they realized I had not contracted Guillain barre but now suspected Transverse Myelitis The Dr's suggested we finish the Plasmapheresis anyway (they weren't ones being bled to death everyday). They needed to do tests on my nervous system to see if that actually is where the damage was. "How did they test for that?" I hear you ask, let me tell you, WARNING...not for the faint hearted. Well they hammered pins attached to electrodes and wires in to my body at various points and ran an electrical current through me (no I'm not kidding in anyway). The Neurologist then watched how my body freaked out and said " hmmm very interesting, definite nerve damage" Anyone still wondering why I'm a bit batty!
A Glimmer of Hope
After 3 weeks of no movement, Dr's warned I'd never recover. I woke one morning and my left hand had a funny feeling, the only way I can describe it is that my hand had potential energy. My hand felt like it could move at any moment. My mother slept at the hospital and she came through. I asked her to massage my hand, with all the energy in world I focused on my hand..and the my fingers curled open! What a celebration! The excitement in the ward was amazing, news spread through our little town of Springs 'Tania the paralyzed 10yr old' was recovering. The movement in my hand gave so much hope, there was life left in my body. The possibilities were limitless. With the new found hope I was sent home to recover.
The doctors had ventilators ready as they expected the paralysis to hit my lungs. I remember waking in the morning and feeling like someone was sitting on my chest. I was moved to ICU. By then the paralysis seemed to have run it's course, leaving me completely paralyzed from the shoulders down. My breathing was shallow but I was managing without a ventilator, which made me very happy as I was told I couldn't talk attached to a ventilator! Talking was and is still my favorite hobby!
Long Nights in ICU
So there I was completely paralyzed, no-body could tell me what had happened and what was still to happen every test still came back negative. My family put on happy faces and tried hide how scared they were! It worked really well I was not at all aware of how scary the situation was. I remember the hospital psychologist coming to talk to me and saying.."you must be so so scared!" and I really wasn't sure why she would say that. I mean of course I would walk again and play sport..hopefully I could drop ballet. My biggest concern was that someone would take my place in the netball squad, while I was recovering.
The nights were endless and agonizing. I lay in ICU not able to sleep a wink, I made up songs to the beeps of the other patients vital monitors! The smell of burned toast was sickening at 12 o' clock every night when the night staff had their 'lunch'.
The strange thing about this paralysis was that even though I couldn't move at all my skin was hyper sensitive and itches drove me almost insane, remembering I was unable to lift a hand to scratch. I became an expert at explaining exactly where the spot was on my face. Let me tell you there is a the smallest spot of skin between the ridge of ones nose and the corner of one eye..that is by far the itchiest of all itchy spots in the entire body. How do I know this? That spot my dear friends was itchy 24 hours a day and no-one could find that spot. Don't talk to me about frustration! So being the creative person I am, I came up with a solution I figured out how to blow out my mouth in such a way that a strong gust of wind would hit the spot. Okay so close your mouth tight make a tiny opening by parting your lips at one side and blow hard, moving your mouth from left to right until you hit and conquer the queen of itchiness!
The creases on the sheets from shoddy ironing felt like razor blades under my sensitive skin. I was told there was nothing they could do about that. The nurses thought I was crazy
My Days
The days went by a lot faster with family and friends visiting and yes lets forget the constant tests being run that made life so fun. We'd start off the morning with a lumbar punch before breakfast then I'd have to drink 25 quarterzone tablets that I couldn't swallow too well. My mom would crush it and mix it with peach Tropica to hide the taste...did it work? NOOOOOOOOOO! To this day I start praying in tongues when I pass the Tropica section at the supermarket! By far the most fun were the procedures. By this stage Dr's suspected I had contracted Guillain barre. They started me on an exciting new procedure called Plasmapheresis Basically they drained blood out of my body replaced the plasma cells with donor plasma and then very kindly put it back, leaving me indescribably ill. I needed 10 sessions but at 5 sessions they realized I had not contracted Guillain barre but now suspected Transverse Myelitis The Dr's suggested we finish the Plasmapheresis anyway (they weren't ones being bled to death everyday). They needed to do tests on my nervous system to see if that actually is where the damage was. "How did they test for that?" I hear you ask, let me tell you, WARNING...not for the faint hearted. Well they hammered pins attached to electrodes and wires in to my body at various points and ran an electrical current through me (no I'm not kidding in anyway). The Neurologist then watched how my body freaked out and said " hmmm very interesting, definite nerve damage" Anyone still wondering why I'm a bit batty!
A Glimmer of Hope
After 3 weeks of no movement, Dr's warned I'd never recover. I woke one morning and my left hand had a funny feeling, the only way I can describe it is that my hand had potential energy. My hand felt like it could move at any moment. My mother slept at the hospital and she came through. I asked her to massage my hand, with all the energy in world I focused on my hand..and the my fingers curled open! What a celebration! The excitement in the ward was amazing, news spread through our little town of Springs 'Tania the paralyzed 10yr old' was recovering. The movement in my hand gave so much hope, there was life left in my body. The possibilities were limitless. With the new found hope I was sent home to recover.
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