Adjusting to a wheelchair as a teenager

I have mild Cerebral Palsy but it wasn't until the age of 15 that I used a wheelchair part- time. Before this point I had seen it as giving up- and probably should have used one quite a few years before I did to prevent higher pain levels and fatigue. As I approached my teenage years my health/ mobility began to deteriorate and I was experiencing pain which was just getting worse and worse. Previously my Cerebral Palsy was not too noticeable and I no longer had to wear AFO splints. As a teenager you normally gain more freedom, become independent and find yourself. Yet I found myself having to rely on others more, at times feeling stuck in a chair, as well as having to adapt to changing health which led me into the unknown.

Part of adjusting has actually been learning how to use a wheelchair, and to start with I was such a bad driver! The first time I used my wheelchair at school, it was the first time I had pushed myself and I was hoping it would go unnoticed but was prepared for questions from fellow students. In this particular room it was quite tight in terms of how big my chair was at the time and I reversed straight into a table moving it out of the way. This movement did create a few laughs, and I laughed with them, but deep down I was so annoyed and had no idea how I was ever going to get used to this. Being a clumsy person to begin with I didn't have coordination on my side. The chair had been delivered and left for my use, it came with a massive manual- but this didn't help with the practical logistics (because it is much harder than you realise!). Over the last few years I have become more skilled at using it, but this has been through practice and a lot of trial and error- try being on a slope, opening a door and having to get over the raise at the bottom of the door!

Learning that the use of a chair is not giving up has taken me a lot of time to come to terms with. Surely if I could just last another hour without the use of my chair that would be good? If I could manage to walk this far last week then why couldn't I do it today? You must need to be in more pain to 'qualify' the use of a wheelchair? This inner battle with myself went on for a long time, and even can happen now. I felt the need to justify my decisions to others, when in reality it was myself that needed convincing. My family and friends were very supportive of me using my chair, in fact at times they urged me to do so. A change in health meant accepting that the things that I had previously taken for granted were becoming harder to achieve. I wanted to be off shopping with friends, off out for meals or going on lovely long summer walks- yet this was becoming harder to keep up. I tried and tried to be involved, only to have the backlash of more pain and needed to recover for days after. Over time I have found that it is possible to do all of those things in my chair and that pacing yourself is vital if you are wanting to get to the end of the week awake.

Something else which I found difficult was a loss of identity. It felt like I no longer was referred to as Chloe, more the girl who uses a wheelchair, but what if I didn't want to be that? Even worse, it was assumed that I knew every other person who used a chair- which also was not true. I was coming to terms with my health and seemed to momentarily loose myself amongst it all. Using a wheelchair may not have been a medical diagnosis which came with a label- but at times it didn't feel like that. I felt that I had just figured who I was, when it was all pulled out from under me, starting from scratch. I wanted to be seen as more than someone who used a chair, and certainly was not going to sit back and let that become my identity, nor an excuse to not accomplish something. To begin with I was so certain to prevent it being my identity that I refused to have pictures taken if I was in my chair, I guess that was visual proof that I hadn't quite accepted yet. On the other hand, by using a chair it has actually made me want to build a stronger identity, just to counteract what I saw as a barrier. I have set out to make people see Chloe, who happens to be sat down.

Adjusting to a wheelchair as a teenager is certainly not an easy task, but you will get there, it does become easier. By overcoming this hurdle it has enabled me to keep going and live the life I want to. Chair or not, I am still me, that is the most important thing I have learnt over the past few years.

~Chloe x

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