Life Is What You Make It - Campaign Edit

From the start, things were stacked against me. I was a premature baby, born at seven months. That alone meant my chances weren’t good. I was tiny, weighing less than a bag of sugar. I fit easily in my parents’ hands, but, thanks to a series of ‘unfortunate events’, it would be a long time before either would hold their baby daughter.

Soon after my somewhat eager entrance to the world, I was taken, as ‘prem’ babies are, to the Intensive Care Unit, and placed in an incubator. I will tell you, to the best of my knowledge (through what Mum has told me) and ability, about the events that happened next, and how they would change my life…forever.

My first few days were anxious. My tiny body struggled to hold onto life and my parents could do nothing but watch.

I was looked after by a wonderful team of doctors and nurses who did everything they could for me. Somehow, I caught an infection. All I know is that this infection developed into septicemia and I now needed a blood transfusion.

My parents waited.

I came through it.

Over the next few days, I was returned to my incubator wrapped in bubble wrap, (very fetching!) and attached to a heart monitor. Mum was relieved. “She’s come through this; surely, nothing else can go wrong, can it?”

In the early hours of the following morning, Mum awoke with a jolt. Something wasn’t right. She instinctively checked me and called for the doctor. The heart monitor I had been linked to showed no problems, it was beeping reassuringly, as always, but … I wasn’t breathing!

The doctors battled to save me, “Come on, baby” one was heard to say. “Come on!”

I must have heard them, because I began to breathe again. My mum cried. I was alive!

But I had already paid the price, and my life had been changed forever.

In those minutes when I was ‘dead’, no oxygen was reaching to my brain, and the parts that control my mobility were damaged. I was nine days old.

Cerebral Palsy affects its sufferers in different ways. Some can’t talk or walk, some have learning difficulties. I know I got off lightly. But it’s been a long, hard road, getting to where I am now.

Until I was eight, I attended a ‘special school’, attached to the hospital where I was born. It was a cozy, happy, safe place. I had a lot of my friends and many of the teachers there called me “Miss Sunshine”.

It became obvious to my parents that I needed more. I could do more.

All I knew was that there were days when I would finish the work early, and I was able to sit at my desk and write stories. I loved that, but what I loved more was helping the other children. They were my friends and there we were all in the same boat. I was not different.

I had many friends that were much worse off than I was. My best friend, Eleanor, was a lovely little blonde girl, with the most beautiful blue eyes I have ever seen in my life. ‘Ellie’ couldn’t walk or talk. She talked to me though. We developed a code. She used her hands, eyes, and facial movements to tell me things. I’d ask her a question and she would indicate yes or no with her left and right hands. Most importantly to me though, she was Ellie. She would laugh with me … although sometimes, I knew she laughed at me! I would spend playtimes, despite my difficulties walking, pushing her around in her chair. I was nothing special, I just loved being with my friends.

The day I left to go to my local ‘mainstream’ primary school broke my heart. Saying “goodbye” to Ellie was hard, because she couldn’t tell me she understood, although her eyes said she did. I never saw Ellie again.

I started my new school a week or so before my parents’ separation.

I was the only person there with a disability, and for a long time children stared at me. I was different. One of the things I hated most was assembly. While the other children sat cross legged on the floor, I had to sit, to the side, on a chair. Crossing my legs caused me pain. It still does.

Eventually though, things settled down a bit and I found my niche. I was ‘skipping rope holder’ at play time. Part of me felt wonderful, so pleased and relieved that they wanted me to play with them, but it hurt too. I wanted to be the one skipping or playing hopscotch, and I hated being left out of ‘kiss chase’ but I understood that it was just the way things had to be. There was, there is, no choice.

At age eleven I moved over the road to the local secondary school. Again, I was the only one with a disability. I was a different ‘fish,’ and this time, in an even larger pond. This time though, I didn’t feel so alone, because a lot of my friends came with me.

P.E. lessons were always the worst. I was time keeper, or whistle blower.”Count the cricket bats as you hand them out, Helen.” It was all the teachers could do. It wasn’t their fault. I had to be included.

It wasn’t their fault either that I would frequently go to the ‘girls toilets,’ lock the door, and sob my heart out.

In time I discovered that there were things I was good at, things I could really do.

You know I had always loved writing stories, but it was around this time that Mrs Rogers, my wonderful English teacher, suggested I write a poem. I rolled my eyes, smiled, and said, “Yeah. It’ll never work!” She just smiled back at me, “We’ll see…” she replied.

Apart from writing, my participation in P.E lessons had taken a new, more exciting twist, (no, it wasn’t a tall, dark and handsome teacher in shorts), but dance lessons!

I hear you say, “Well,that should be her idea of hell, shouldn’t it?” But, it wasn’t! I became a choreographer. I would devise the dance moves and routines for my group. “Can you just move your leg up a little higher? Hold tighter! “Ok, start again!” I loved it! Teachers would come and watch and people actually wanted ME to become part of their group!

Just when things were starting to get better, my condition, as the doctors had said it would, began to get worse. I had been in a wheelchair for some of the time, for many years, but now it became a virtually permanent thing. I knew it would happen. Puberty had made my body heavier and so the strain on my already painful hips and knees became worse, and the increased pain, unbearable.

It was time for ‘The Surgery’.

I can’t even begin to tell you how terrified I was. The hospital was 150 miles away from my home in Somerset. It was ‘the best’ place for me to be. I knew it would involve at least three operations and I knew I would be away for at least three months.

My first of this set of operations took place on July 4th of 1996. A family friend called it ‘Helen’s Independence Day.’ I wanted to crawl under a stone, and die. “Just think of how wonderful it will be when it’s all over” Mum said. I smiled and said, “Oh, okay.”

During the first operation, the doctors had to break and reset my left hip so that it was in the ‘right’ position. They put a big plate in my hip to help the bones heal. The plate had to stay there. Also during that same operation, they put a screw in my left ankle, to help it take weight. The screw has to stay there too.

I don’t remember much about after the operation, just snippets, and pain.

But the pain and the events following the second operation, I will never forget.

It took place two weeks after the first, and it involved…cutting muscles.

The doctors had to cut the muscles on and behind my knees in both legs, and also cut the muscles just above my hips. Again, it was both legs.

I woke up after the operation, and immediately, to put it bluntly, wished that I’d died on the table. All I could see was a red haze, and the pain was…well, it wasn’t pain, it was agony. I can’t describe it to you so I hope you don’t mind if I don’t even try! I just know that I’ll never forget it.

Mum says I opened my eyes, looked at her, squeezed her hand and passed out again. The next few weeks are what I call my ‘lost period.’

I was attached to a morphine drip, still in pain and in and out of consciousness.

One day though, I had the strangest experience. I woke up, and I was above my body, staring down at myself. I could see my parents on either side of my bed and me, lying there, pale.

I remember clearly being able to see Alfie, a boy in the next bay that I had made friends with. He was talking to the nurses. The next thing I knew I was back inside my body, and holding my step dad’s hand.

Soon, my rehabilitation began. I had to learn to walk from scratch, the ‘right’ way.

It was hard, so hard. There was day after day of physiotherapy, exercise classes, hydrotherapy, pain, and more pain. I didn’t even get a break when I was asleep. I had to wear these long blue splints that went from top of my hips, right down to my ankles, and I had to sleep on my tummy. If I tried to change position, a nurse would come and flip me back again. They really must have had eyes in the back of their heads!

Eventually, it was time for the dreaded ‘bars’. They ran parallel to each other, and I had to walk down the middle and get to the chair at the other end. Every step was long, slow, painful, and so very frustrating. “Come on Helen, you can do it! Just one more!” I wanted to break down and cry. Frequently, I did.

It was around this time that I started to lose pieces of myself. My hair had gone grey and I had already lost weight, but then things got very bad.

I was only seeing my family at weekends. Life had to go on for them and they had jobs to do, so they had to go home during the week. When they arrived on Saturday mornings, I was awful to them. I resented them for leaving me and going back to normal. After all, I couldn’t. I was stuck. I resented them when they came, but I resented them more when they would kiss me goodbye and leave on a Sunday night.

I was a shell of the person I used to be. I hated myself. I hated the situation. I felt hopeless and pathetic. I didn’t eat very much, and when I did, there were times when I would make myself sick. I can’t explain it, but it went on for a while.

One day, Sister Judith took me into her office. “Helen, you can’t keep doing this. If you do…you’ll die. I know this is hard, but you need your strength. I don’t want to have to put you on a drip, love.”

I was still reeling. I didn’t want to die. No, I didn’t want to die, there.

Somehow, I managed to get it together, for the last ‘push’ as Judith called it. I just wanted to go home. I wanted to see my friends, my dad, my cat and, scarily, I wanted to get back to school.

It was hard but when I left hospital a month later I was walking with a frame. The operations didn’t turn out to be the ‘miracle cure’ my head and heart had hoped for but, I’m not in a wheelchair anymore! A few months later, after a lot more physiotherapy, I was able to ditch my frame with its go faster stripes, for crutches.

Life is tough, and I get frustrated. I get sad that I don’t get a rest from it, and I’ve been stuck with it, through no fault of my own, and yeah I get angry. There are days when I just crumple in my husband’s arms and cry like a baby.

People often ask me, ‘If you could wave a magic wand, would you change it?’ On days when I’m depressed, or in pain, yes of course I would! I would give anything to be able to carry my dinner across the room, go for a long walk with my husband, or run up a flight of stairs, but more often than not, I know it helps to make me who I am.

What I’ve been through (I hope), makes me a better campaigner. I see people as people rather than their illness, or a number on a page. Each person has a story, and life experience, and it’s all worth listening to .

That is where this government is going wrong. They don't see us as individuals. To them we are a seemingly worthless ‘problem’ group of people who don’t fit where society (and the government want us to). That is not our fault! I certainly wouldn’t choose to be in this situation. I don’t think anybody would.

Since I am though, I am determined to try and do something good with it. I want to turn all the bad things into something positive. I want to help increase understanding of the difficulties that disabled and ill people face on a daily basis.

Disabled and ill people aren’t ‘scroungers’ or a ‘drain on society’. We have been through more, and continue to go through more than most people can imagine. We are all a part of society, and deserved to be treated with respect and dignity, just as everyone else is.

My life is worth something, despite what this government would have me (and the rest of society) believe.

I have been a disability rights campaigner, (at different levels, when able, of course), since I was eight years old, (almost twenty six years), and I will go on fighting for as long as I have to.

After all, life really is what you make it!

                                          Baby Me!

#helenswriting