Times may be changing when it comes to talking disability. Amazing individuals, groups and companies are making waves, pushing boundaries and showing the world that ‘This Girl Can’ every single day.
Having grown up in a world before this time, I find myself struggling with the label. Being born with facial palsy, I learned first hand and from day one, how tough things are for people who are different. Disabled? I could never relate to that word and I never wanted to.
I looked different. I had certain struggles that others didn’t. While kids were chilling in their Summer Holidays, I was having another round of major surgery to try and ‘fix me’.
With all that, I could still stand shoulder to shoulder with everyone and do what everyone else could. I was treated differently. I had to go the extra mile to prove myself, as I had to push through the barriers of other people’s assumptions. Disabled? No. There wasn’t anything I wasn’t able to do.
I didn’t need help or assistance in any way. I was regular, just in an irregular package.
The facial stuff was and is a lot to handle. I can’t take a day off from it either, it’s on my face. There are days when it bothers me more. Days when I completely forget. Days when friends make me forget. Days when strangers remind me never to forget. It’s quite a situation.
I was diagnosed with PCOS (Polycystic Ovary Syndrome) at 22. This caused pain, weight gain, acne and all sorts of girlie issues. I suffered badly with rosacea and took antibiotics for months at a time. No makeup up would cover it, my confidence was just being constantly battered. While still in my 20s, I was diagnosed with Ulcerative Colitis,which would turn my life upside down for many years. Disabled? No. I was still kicking ass.
Still working, still driving, still maintaining a home, a marriage, looking after children and managing a social life. I did all that, together with my medical stuff, in my stride. There were hard times. Far too many if I’m honest. My strength cracked a few times but I kept going.
With all this came a delightful palsy side effect. Because I have a weaker left eye, it was prone to infections, namely corneal ulcers. The pain caused by these tiny little invaders is substantial. I lost count of how many hospital trips I made because of those. How many prescriptions for antibiotics and steroids. How many check ups and tests, over and over. Disabled? No. I was still doing everything.
My mental health did slip and slide throughout this time. I was managing everything but it was exhausting. I was starting to feel like I was just being repeatedly clobbered with stuff. It’s hard to not take it personal, when it’s starting to feel like I was being targeted.
Then came RP in my 40s. Visual impairment guaranteed. This wasn’t instead of everything else, this was as well as everything else. With a reduction in my visual field and my driving licence being taken away, I am now having to do things differently. No longer so independent. No longer able to do everything without help.
Disabled?
After a recent doctor’s appointment, I was informed that I would now be eligible for a bus pass. On reviewing my local council’s website, I discovered she was right. I now qualify. I tick the box as being disabled. Completing the form was one thing. Having the card in my hand was like a knife in my heart.
From day one people have assumed I was disabled. Made judgements and assumptions about me, that I have been able to tear down. I have been able to change people’s perceptions, whilst being able to confirm to myself, that there is nothing I can’t do! Here I am with this card in my hand informing everyone, whether they asked or not…I am disabled.
This is part of who I am now. I fought so hard. I never gave up. I took everything I got given, with strength, grace and determination. If everything happens for a reason, what is it? If there is a lesson, where is it? If God doesn’t make mistakes, what exactly is the plan here?
I still want to believe that this girl can. Today, I’m just not feeling it. Can’t be a sparkly dollop of fine and dandy all the time I guess.
Headphones in. Gospel Music on. Come on Gratitude, where you at!
Just for me
Many doors you’ve closed
Just for me
Sometimes you will say no
So I’ll be
Tested in your fire
To purify my desires
So my blessings won’t be
Just for me
So caught up in myself
I couldn’t see
The world did not revolve around me
So storms are in your will
So I can feel what others feel
Their needs, if I could speak honestly
It don’t feel good
But growing never does
It don’t seem fair
For you to call this love
But if necessary pain
Is the ingredient for change
Even when life may be bittersweet
It’s working
Just for me
All the moments I missed
That were just for me
Because I chose not to
Wait patiently
Before every mistake
Was the same amount of grace
That kept my blessing waiting
Just for me
But trust in your timing is not easy
And what I want’s not always what I need
Somewhere I forgot
You are God and I am not
I see, if I could speak honestly
It don’t feel good
But growing never does
It don’t seem fair
For you to call this love
But if necessary pain
Is the ingredient for change
Even when life may be bittersweet
It’s working