United Brachial Plexus Network, Inc.

Michelle,

Thank you soooo very much for sharing your experience with us. You wrote about so many powerful thoughts, ideas and feelings. Your essay brought me tears, frustration, laughter, hope and inspiration! I had to save a copy to share with my child when he gets older. Thank you!!!

Michelle, thank you so much for sharing and opening yourself up as you did. I work with young adults such as yourself everyday and am very aware what even a slight difference can make. I ask for your permission to keep a copy of your essay to share with my son (now only 3) when he is older. Though his injury is not as severe as yours, there will still be a difference. Your essay will be a powerful teaching tool. Thank you so much! Patti

Hi! OMG thank you all so much! i am cryin and im the one who wrote it but your replies are so....jst amazin!

This is my essay that i plan to hand in in 2weeks time as my personal/reflective for english. Do you think it is suitable or too much of a life story? i would educate my teacher if i was to hand it in!

I give you all permission to hold on to my essay! and show it to your kids because they will then realise that what they are feelin is normal!

Im so happy you thought it was good. Im not a good writer but i think i made a pretty good job of that one...probably bcos i knew EXACTLY what i was talkin about. the feelings experiences and everything else!

You should try and get your children to do the same when they are older! It has made me sooo happy!


Michelle x

Wow, wow, wow.

Thank you so much Michelle for sharing that with us.

I appreciate hearing a young person's perspective about BPI. Your innermost thoughts, feelings, memories and ideas are priceless to me as a parent of a child with this injury. It has given me a glimpse of what is yet to come and I thank you for sharing.

You've done a wonderful service to this forum. You've shown yourself to be an intelligent young lady. You present yourself to be very 'put together' and confident in yourself.

Your parents must be so proud of you. What a gift you are to them. What a gift you've given to us.

Thank you.
Missy

Wow Michele, that is really awesome. I will hold on to it and share it with my son when he gets older. You did a wonderfull job, keep it up !!!

I am here in tears after reading this letter. My three year old beautiful daughter has klumpke's palsy and I fear for her as she gets older and has to go through all this. However, It is a great letter and you should be proud of your writing and yourself. You seem to be reacting maturely to a situation noone should have to go through.

God Bless,
Charmaine (and Karrie )

The 17th of November 1985 was a cold, frosty night, so I’ve been told. My parents could see the winter setting from the small window in the labour room. I was about to make my first appearance to the world in the next few hours. This was a nervous but very exciting time for my parents as they awaited their first child who they expected to be perfect in every way, which they could love and protect from the harm. A whole seventeen hours later, I arrived, looking at my parents with large eyes and spiky black hair. Before they got the chance to touch me, I was swooped down the corridor in a trolley to the special baby care unit.

The baby that my parents waited so long for to protect from harm, was already harmed by the man my mother trusted to delivery her baby safely. I was the victim of a rare birth injury, which could have been prevented if the right precautions were taken. The name of the injury is Erbs Palsy. This is caused when the doctor uses excessive force on the baby’s head and pulls, tears or damages nerves in the Brachial Plexus leaving them with a partially paralysed arm. The injury can range in severity depending on the extent of nerve damage.

However, my parents simply were told that it was called Erbs Palsy and told that my arm would heal within a month. They soon realised that this was definitely not going to happen when they saw no movement in any part of my arm 8 weeks on. My mum fought to get me seen by a specialist, but unfortunately failed because “her baby was in good condition”. My mum realised she needed to work with me to gain sensation and movement of my arm. She had to leave her job and be with me and work my arm back to good health. She became my physiotherapist since no one else was willing to. With a little help from her friends, she created a hefty list of everyday things that I would struggle with using one hand. She gradually made everyday tasks into a form of exercise that she preformed on me three times a day. She began to see a difference in me, so continued to work with me and kept her job on hold.

As I got older things got more difficult, I was learning to eat on my own which was difficult because I had limited use of my right arm. Also walking was a task because my arm was tucked in which made balancing hard for me. My mum had to watch me get frustrated doing simple things that everyone else’s child managed with ease. Eventually, she got a specialist to agree to see me but was disappointed when he told her that I was injured at birth, my injury was called Erbs Palsy and I would never recover. This did not make her give up, it made her try harder. She tried to get me a block of physiotherapy but my arm was too delicate for anyone to work with. It seemed as if I was the only person in the world who had this birth injury and I was going to have it forever because no one knew anything about it, simply a name.

Furthermore, my primary one teacher refused to let me write with my left hand so I was moved class where the teacher could accept that my right hand didn’t work. Primary school was probably the worst time to have Erbs Palsy or even be different from the majority of children. All a child wants is to fit in; I tried and tried but my arm made me fail. As everyone knows, children are cruel, they say what they think. For me, I didn’t realise I was different from the other kids until it was rudely pointed out to me by the class clown. He called me a “spastic” and pointed out on the picture board that someone had drawn me with a bent arm. It just goes to show, childhood memories are they ones that stick for a lifetime. My arm was also at dislocation risk all the way through primary school, but my fellow pupils didn’t seem to understand not to pull my arm. This lead to many dislocations and painful relocation visits to the Law Hospital.

However, I survived primary school and then made the transition to high school where I was endlessly questioned about why my arm was shorted or why I couldn’t do what everyone else could do. I was shy when I came to high school because there were new people and it was a completely new environment for me. I was too busy watching out for those people we were constantly told about that flushed the 1st years head down the toilet to realise that I was so different. When I went into 2nd year and everyone was getting so wrapped up in fashion and how their hair was, that’s when my feelings really hit me hard. I had to face that I was different. My parents always told me that people who wear glasses need glasses because they’re eyes don’t work properly and my arm didn’t work properly so I couldn’t do some things that other people could. For me this explanation worked, but not for much longer. More than one person in my class had glasses yet, I was the only person in the entire school to have Erbs Palsy. I really hated some people for asking me so many questions which I didn’t have answers to. Like my parents, I only knew the name of my injury and my explanation to how it happened, was simply, I got stuck when I was being born. Like all my friends, I began to get new clothes that were pretty and began to take pride in my image; therefore I spent more time looking in the mirror and more and more time looking at my arm. I cried for hours sometimes asking myself why it happened to me. I really would not have minded if someone else had it to share my feelings but I was lonely and had no one to turn to. They wouldn’t understand. My parents were always there, but it seemed like a taboo subject to them that was not to be mentioned. I couldn’t bring myself to mention that I wasn’t happy with the way I looked because I thought my mum maybe thought it was her fault, but I didn’t think for a minute that she was to blame.

My lucky day came when my mum had just bought the new edition of “Best” which contained a lengthy article about Erbs Palsy. I was sifting through the magazine when I discovered it and excitedly asked my mum if that was the same as what I had, she said yes and asked me if I wanted to see a doctor. I was so excited, finally I could look like my friends, and I could wear strap tops without the right strap falling off all the time. I couldn’t believe that she had offered me this opportunity. I constantly reminded her to phone the help line from the magazine but she brushed it off for a while. Weeks past and she still hadn’t phoned. I would lay the magazine open at the page in places where she would see it, still nothing. I was so disappointed that I felt sad; I wanted to phone it myself. I couldn’t because my mum would have to be there to see the doctor with me, she obviously didn’t want this. I eventually brought myself to ask her why she hadn’t phoned. Her excuse hit me like a ton of bricks. I could believe it. She knew from the articles that the operations available were very length, complicated and still at experimental stages. She did not want this. I thought she was so selfish. I wanted it more than anything in the world at that time. To have two straight arms that worked would be a dream come true. I went for a shower and cried with anger because she wouldn’t let me be part of the experiment. I thought that if I had the operation and gained more movement that would be great and if I was operated on and gained nothing, that would be fine too because I had tried. She couldn’t understand this.

Furthermore, I realised there was more people than just me out there with Erbs and I really wanted to get in touch with them. I was too young though, without the help of my mum, it was useless. I didn’t even know how to spell “palsy” to search it on the Internet. It made me more and more angry as weeks and months past knowing that help was out there for me and I wasn’t allowed to get it. I began to feel down so often all because of an arm. It felt so silly because I am more than an arm but it seemed to be really noticeable. I began to speak to my friend about how I felt and how angry I was and she nodded her head caringly, telling me she knows how I felt but I knew she hadn’t a clue how I felt, this made me more angry. She couldn’t do anything to help me and I know she tried to comfort me by saying it wasn’t noticeable but to me it was the first thing I saw when I looked at myself. We went on holiday at Christmas together when we were 14 and had the best time ever. We had such an unforgettable week in Centre Parcs; we couldn’t wait to get the pictures developed when we got home. We talked about it for days and when our pictures were ready we were so excited to see them. We whipped open the envelope and there I was standing next to a tree with two massive skis on, laughing so hard and my arm sticking out a mile from my body. Suddenly that memory wasn’t so delightful. The fun drained right out of that holiday even more with every time I looked at a new picture. It hurt so much to look so different. It got to the stage when I tried to hurt my arm by hitting it off doors and punching it, but I didn’t feel any of it because of my lack of sensations. I wanted it either off or fixed or never have another picture taken in my life.

I always told myself that if I couldn’t have it fixed by the time I was 16 years old, I would like it amputated because I knew that doctors could amputate limbs but not make them straight. However, I wasn’t being honest with myself because I wouldn’t seriously have got it amputated, what I had was better than nothing. I felt better by telling myself that doctors were working on a cure and it wouldn’t be too long but all along I was still so angry. I was angry and everything, even my parents. I was most angry that it happened to me and no one understood my frustration and that I was not allowed to go and see a consultant about having it fixed. Things had just gone on too long and I needed to help myself, be it with or without my parents.

When I turned 15 years old and had Internet access in my house, I done a lot of research on birth injuries and medical malpractice and finally discovered Erbs Palsy. The excitement soared through my body as I clicked on the link to the website. I couldn’t believe that I was going to read about it. When the window opened I was even more surprised to discover message boards on a forum. It took me a while to understand that I could really chat to people who had Erbs Palsy or their children had it. It was all too much for me to take in. Nevertheless, I started typing in my story and how I would like to talk to someone my age, who knows how I feel. I felt better when I had wrote it but soon became addicted to the website waiting for a reply from my new friend with Erbs. I waited, and waited and waited until one day I got a reply from a girl who was 15 and lived in Edinburgh. This was ideal, she was my age, lives relatively near me and she will know who I feel because she has right Erbs Palsy too. I took a note of her email address and emailed her straight away and added her to my chat list. Lucky for me she was online at that time. The excitement was making me restless. I had so many things to ask her, so many things too tell her and so many things to compare. Soon I had a list of girls and boys the same age as me emailing me. I was overwhelmed. I went from not knowing another person with Erbs to having a choice of people to speak to.

The website I had been visiting was a charity called United Brachial Plexus Network who held lots of fun days and send out regular newsletters. I signed up for the newsletters thinking that it wouldn’t just be interesting but it would also get my parents involved. Sure enough, my plan worked great. My mum asked what my letter was and I proudly showed her the newsletter. I think she seemed quite shocked but there was nothing stopping me. I read it from cover to cover whilst eating my breakfast and then couldn’t wait to get to school to tell my friends about it. I kept going through them to see if I missed anything about doctors or specialist that could help me, but search was unsuccessful. A few months later I received a newsletter along with a list of specialists. I couldn’t believe it, everything I wanted was happening. There were only two specialists on the list and they were both in England. This didn’t put me off as I paraded down the hall to show my mum the list. By this time I was 16 and demanded that my mum phoned the London surgery and get an appointment for me. This time she did not hesitate and seemed quite excited about it. This really lifted my spirit, just thinking that I was soon going to see someone who can offer me treatment to take away my mental and physical pain of Erbs Palsy. To my disappointment, I didn’t get an appointment because I had to go through my GP that I had to wait weeks to see the GP. It just seemed such a drag waiting for my GP to write to London and London to get back to them and then to let me know when my appointment was. Eventually, 3 months later, my appointment card dropped through the letterbox in the morning post. By this time I had almost forgotten about it and my appointment wasn’t as soon as I would have liked it to have been, but however I have got one and I am quite satisfied with that because I realise that every 1 in 1000 children born in the UK has to get an appointment with this doctor. I am not the only person in the world now with Erbs Palsy.

I wouldn’t say my life has been a struggle because of Erbs Palsy but I definitely have to compensate for the lack of use in my right arm. I feel proud of myself though because I manage every day things that everyone else does with their two perfect arms and I have one and a half and I manage just as well. I am also very thankful to my mum for all her hard work that she put into my life with Erbs because she gave up so much to work with me because I was refused treatment from professionals. My parents are now very supportive about my arm and are also excited about my visit to London at the beginning of 2003 to find out what treatment is available for me. I definitely haven’t allowed my arm to stop me doing anything I’ve wanted to. I play the keyboard and the tenor horn, both with my right hand. I think my instruments have been a good source of therapy.

Now that I have had contact with other people with Erbs Palsy, I am not angry at all about my injury. It has happened to so many children and now some of those children are adults and we all have to live with it. I am just glad that I have people to share my feelings with. Except from being angry, I think my life with Erbs Palsy has made me a stronger person because I have learned to cope with a lot of things other people don’t have to. I struggle to do things that others find so easy and take for granted. I also think that having a disability has made me see past other people’s disabilities and see them for the people they are instead of seeing them as a disabled person. I have learned that most people with Erbs Palsy have a good sense of humour because they have learned to laugh at themselves as a part of survival. I would like my arm to be fixed but after meeting so many people with it and learning more about it, I am not sure if I would like to go through lengthy operations that would leave me with a straight arm and a lot of scars or forget the operation and keep my arm just the way it is. I feel it’s a part of me and if I didn’t see myself with my “bent” arm I wouldn’t be myself. It has been that way since I was born, I’ve learned to live and after all it’s just my arm called Erb.