I was eleven when I was diagnosed with JRA. Soon after I heard about a summer camp being held in Perth for kids like me. It amazed me to think that there were enough kids out there going through this horrible process to have a camp full of them. The only other kid I knew with JRA was Bradley and he was a lot younger than me so we really didn't talk too much. I felt alone at that point in my life and a camp sounded like an awesome idea.
The problem was we couldn't afford for me to go. To get a sponsored place I needed to apply for a scholarship and that involved writing an essay about how JRA had affected my life. I'm sure at this point the blood drained from my face as contemplated exactly what they wanted. In my twelve year old brain, JRA hadn't just affected my life, it had completely ruined it and I knew that they didn't want to hear that. I was sure that they wanted some fluff piece about I had overcome adversity and beaten the odds to become this stronger, wiser, somehow better version of myself. Even with the imagination of a child, I couldn't do that. I couldn't comprehend the idea of a world where my life would be OK with JRA. Then I would doubt myself. What if I was wrong and they wanted the truth, that I couldn't see how it was possible to have the same opportunities as my friends, that life wouldn't be the same and I would alone... forever.... What if the sob story sold and I got my place out of pity? The same pity that was on the faces of the adults that surrounded me. I didn't want it if it came with that condition.
Worse still, what if I told my story whether it was the truth or the fluffy version of it and they didn't want me there. What if I found out that I wasn't good enough? I was probably different than most of those kids too. Kids that could still actually walk without help. Kids who's lives weren't quite as broken as mine. Those that had figured out a way to write the essay about the happy times and how much stronger and better they were than me.
The truth was, I couldn't deal with my condition. I couldn't control it. I couldn't control anything in my life. I tried once. To control it. To take my medication or not to take it. It didn't make me feel better. It just made me sore and I got in trouble. Why would I do that? Why wouldn't I do what I was told? Do I think that I'm the only one going through a difficult time? Why didn't they understand?
I couldn't see a way of growing up and being anything but that sick child that needed so much help from people that tried so hard to understand but just didn't. I didn't know what I wanted or what I needed. I know now that all I really needed was to feel like I had value and a belief in myself and that I could work it all out.
This is one of the few distinct event memories that I have of that first year after my diagnosis. The rest is a blur of pain and helplessness, of anger and grief for a life that I thought I had lost. It seemed never ending as time drew past the twelve month mark where 'for most JRA kids it burns itself out' and it didn't. I could walk again but the pain was still there. I still needed medication. I knew that there would be a lot of things that I might never do again or be able to do for the first time.
Somewhere along the way I realised that there were still a lot of things that I could do. I found things that I enjoyed, found ways to cope and found ways to live. It wasn't always easy and I still have days where I think that life isn't fair where I wonder why I was given this faulty body to work with. I still don't like to talk much about when I got JRA except in the fluff pieces where I exclaim that it had made be a stronger, better and wiser version of myself. It's easier that way. Easier to put it behind me and take each new day as it comes.
Some days the pain is still there and I've had to fix a few joints on the way but I've done OK. I've done a lot of things that I never thought I'd do. I survived my JRA childhood and became the regular kind of troubled teen. Ok, I needed to make some adjustments and compensations along the way but I managed. I had fun.
I went to uni and rebelled.
I worked and learnt to support myself and take care of me.
I've had good jobs and bad jobs and still don't know what I want to be when I grow up and that's ok! (If you're a teen - I'm OLD. 34 this year!)
I went to Las Vegas and partied like a rockstar. I went to London and saw a play. I went to Thailand and relaxed. I travelled when I thought I never would.
I've had good friends and just for time friends who I've lived it up with, who I've shared life's ups and downs with. Some know and some don't.
I've been accepted by others.
I've been accepted by me.
I'm married to someone who loves me, who accepts that my body is a little bit broken and still accepts me anyway. He accepts me for who I am and not just the shell that I want the world to see.
We own a house and are all grown up, making our own choices for our lives.
One day I'll have kids of my own and though I've got a good life, I hope and pray that they won't need to take this road because I wouldn't wish it on them. Just as I don't wish it on you. If there were a magic wand, I would take it away from you because I know.
There is still lots of life to live and though I might not be jumping back in the mosh pit anytime soon, life is good.
So on your darkest days, where no one understands you and you question why you were punished with this horrible disease, please know that even if you don't think that camp full of kids understands, there are more people like us who do understand and have been through this and had great lives. It is horrible and it is hard to talk about. It might not go away but you will be ok.
This is your life and JRA is a part of it. Just a little part. It isn't who you are. You are in charge of making the best life you can for you. That life you create can be great!
No comments:
Post a Comment