Dear Reader
Isn’t life beautiful? It is full of twists and turns and highs and lows. But I bet you weren’t expecting this.
How are you feeling? Alone? Scared? Confused? Lost?
Don’t worry you aren’t alone. I felt that exact same way you do.
I didn’t know what was going on. I was only three years old when I was diagnosed, and from that moment on I had all these people I didn’t know constantly measuring my arms, and making me do what I thought were silly tasks. They made me walk on my heels, jump, balance on one leg. Twice a year they even sat me on the floor and timed me to see how long it took me to stand up. And then I would be having to tests to see how much air my lungs could expel and inhale, and would look at my parents’ face drop when the number was getting less and less. Each time I felt more and more just like a number on a page.
At the time though I still had no idea exactly what was going on and why this was happening. But the one thing I loved was hooning around the playground with my scooter and thinking I was so cool when kids would ask if they could jump on.
Why am I telling you all this? Because I don’t want you to feel alone. You aren’t alone, and what you are going through over 4 million of us in Australia have been through very similar experiences to what you are going through.
There are certainly a lot of things about this life that you didn’t sign up for. The conversations with people, constantly explaining why you are unique, the arguments with people around you for being too protective over you, and the endless tears asking why is this all happening to you. Let’s not even go there about trying to explain the importance of health to others.
But with all the uncertainty around being disabled and what the future holds, there is also a lot of good that comes with it.
A whole new community opens up to you. Sure it may not be the community you wanted to be in, but everyone is there for you and will welcome you with open arms.
For a lot us, we go on to do extraordinary things. We can advocate for equality, represent our country at sporting events, speak at high profile events, document our story for the world to hear, and even start up our own companies or foundations. There are also things that people often assume won’t work out for us like working in politics, as teachers, advisors, or even the opportunity to become loving partners, parents you name it, we have the capability of doing those things too.
But perhaps most of all, we have learnt something on a deeper level that no one else can. Perspective. When you are disabled, you realise just how precious life actually is. We take immense joy in what we can do, and for simply just waking up in the morning to be granted another day.
Perspective drives all of us forward. Sure we all have crappy days; who doesn’t! It is a part of what makes life interesting.
We see our struggles as a way to challenge ourselves and to push beyond them to become more than what we thought was truly possible.
Sure, society norms may make this a tad tricky. But it isn’t impossible.
The biggest piece of advice I can give you; work on loving who stares back at you when you look in the mirror. Disability life is full of things to worry about. But the one thing it shouldn’t control is the love you have for yourself.
I get it; it sounds super fru fru and stupid. But take it from someone who has had to learn to genuinely love themselves as they are.
Society tells us who we should be and tries to pigeonhole us into a category based on our abilities. Which can impact how we view ourselves. Like I said I have been there. I have been angry at my disability, even saying the word made me cringe let alone being around people like me. I wanted desperately to just fit into the ‘normal, and majority’ category of society, but as much as I Prayed my disability to go away, each morning I would wake up and still be me.
But, when you can truly love yourself, and all the bumps that comes with it, you will find total peace in what cards you have been given, and you will start to come out the other side of your acceptance journey.
For most of us, the cards we have been given in life are here to stay. How we arrive at acceptance of that is the golden ticket I feel.
There is so much that is fighting against you externally, you don’t want to also be fighting yourself in the process!
Letting go of control and the idea of what you wanted life to look like won’t be easy, but the freedom in that will be worth it in the end. It is okay to grieve! Its okay to grieve for the life you hoped you would have, for the adventures, and plans that you had for yourself before you realised that you were classed as ‘disabled’. Its ok to cry, scream, yell, be shit scared.
Don’t let anyone tell you to move on and accept it when you aren’t ready; acknowledging fully that you are disabled takes time, and that is okay! It may take you a few weeks, months or, even like me, years but you will eventually arrive at a place where saying ‘I am Disabled’ won’t be a punch to the stomach. It is important to dust yourself off and live life to the absolute fullest and live unapologetically.
Some of us are deemed ‘lucky’ and others ‘unlucky’ depending on the cards we get dealt. And we all, indeed have different abilities. We just haven’t found a way to enable everyone to embrace their own abilities and be judgement and comparison free. But we will get there.
You will sometimes need to stand up for yourself, regardless of who that is. Most times, it will be doctors. And it’s okay to say to doctors you don’t feel comfortable with something, whether that be treatment or the use of aids. It’s your life, and you deserve just as much as anyone to be seen and heard because your voice is valid.
The bullies will come; at school, at work, out shopping, online. But remember as the line in Cool Runnings says ‘people are always afraid of whats different’. It says more about them than you. They just haven’t figured out they are different as well. At the end of the day, difference should be celebrated.
I want to leave you with this: Be bold, be strong, be selfless, be courageous. Every single human on the face of the planet is unique in there own way. We were not born to be the same, we were born to contribute and leave our mark on the world.
For us in the disabled community, our mark can and will be louder than anyone else’s because it is unfinished history. Being disabled shouldn’t be something to feel ashamed about, it’s something to embrace and use it to your advantage to live life on your terms and perhaps even discover what life is all about.
Whatever you choose to do, do it because you love it. Surround yourself with those who can get you to where you want to go (figuratively and literally). Find the moments that make you laugh and smile. Find the quiet moments in between the doctor appointments. Lastly, embrace the journey. You aren’t alone, you will never be alone. I’m not saying disability life is all sunshine and rainbows, but it isn’t all thunderstorms either. Remember; you are you and that is more than enough. You are perfect just as you are.
Till next time.
Rhi.