I’ve thought long and hard about this. Whether to write this in a blog or not. Whether to put it online or not.
I’ve spent the last couple of weeks with this idea milling about in my head. Should I write it? What would people think? Would I be shut down or criticised? I had no idea.
Then, the other day, something happened that made me change my mind and remove all doubt. Which is why, today, I am putting this blog out there.
As you can see by the title of this blog, I wish to tell you the difference between being disabled vs being a cripple – at least according to me.
To begin. I need you all to know- I am disabled. I was born in the year of our lord 1977. The year Elvis left the building for the final time and George Lucas was teetering on the verge of one of the greatest franchises of the modern era. (Which, given the CGI and graphics of the time was quite impressive!) I was a premature baby. I was born 10 weeks early and weighed in at a whopping 1.5 pounds. I was the second baby born on Mother’s Day that year, so sadly my Mother missed out on getting a write up in the paper by about 3 minutes. I was, however, the smallest and that alone made me kind of special. According to those in the know, my Mother had spent months in the hospital trying to keep me in – less I come to early and possibly not make it. The joke between us has always been that ‘my Mother sneezed and there I was!’ -which was pretty much, more or less the truth. I wasn’t a difficult birth and once all was said and done, I was placed in a humidicrib for the next three months until I was strong enough to go home.
As time went on, my parents began to notice I was different. Unlike most children who were learning to crawl and walk and get about – I wasn’t. Or rather, I couldn’t. I went for a ton of tests and finally, at the age of two, I was diagnosed with spastic diplegia or ‘Littles Disease’. You would probably know it as Cerebral Palsy. So, let’s just leave it at that.
My parents were told that I was basically going to spend the rest of my life retarded and to just forget even trying to do anything and accept things for what they were. Thankfully, my parents gave the medical world a big F- that and set about making sure I could get about on my own. My earliest memories involve having physiotherapy, pool therapy, being hooked up to an oxygen machine and even seeing a sports masseuse. I had special callipers I had to wear along with specially made weighted boots to keep me upright ( This failed as I swear to you I fell over more times as a child than I care to count and I have the scars on my knees to prove it) Occasionally there was a wheelchair – especially when it was decided that I’d be wearing plaster shoes covered in grey packing tape. – yes, that was a thing .. Oh well.
During my teens I had to have a couple of operations on both my feet. Both of which were done over the summer months and let me tell you, six weeks in plaster cast over summer is not fun by any stretch of the imagination and I would not recommend it.
By the time I was eighteen, it was decided there was nothing else that could be done. But hey, I was walking around, getting about on my own unaided and just like everyone else doing what I could to get by in the world.
Now, I know what you’re all thinking. Surely after all of this, I’d qualify for some kind of government assistance due to my condition. Some kind of allowance to help me afford the things I need to function in this world? I’d love to say yes. I’d love to tell you that I ticked all the boxes and I qualified for such a thing… but you know what? I didn’t. And you know why? Because, and I quote “I wasn’t disabled enough”
While I wait for you to wrap your head around that, allow me to explain to you the severity of my condition. My Cerebral Palsy affects my right side only. It means I have less flexibility and mobility in my right side than I do my left and as such I walk with a limp. That’s it. No more. No less. Although, I will say, it does make social situations interesting as more often than not, people tend to believe I’m drunk upon arrival and it never ceases to amaze me how many times people have tried to play *Catch up* Look, here’s the truth. You have to get drunk to walk like I do. I do it naturally and without the hangover. That said, I have often wondered if I drank to excess – would that make me walk straight? To date I have absolutely no idea… I keep ending up drunk and suffering hangovers!
There are only three things my disability has stopped me from doing. I will never be an Olympic Athlete, be 5’9 or wear high heal shoes. Outside of that, there’s absolutely nothing wrong with me.
But, honestly, being disabled has never slowed me down. In fact, I’ve never even seen myself as disabled. I’ve been able to get about, do everything everyone else can. I can adult. I can life. It’s OK. I grew up. I got a job. I fell in love. I moved out into my own place, got Married and got given a disability parking permit by my local council – despite not being able to drive!
So, you know, #Winning!
So, you see? That, to me, is what disabled is. You have certain limitations due to your condition but over all, you can still DO things. You are still your own person. You have a certain level of independence that no one can take away from you. You function. You work it out. You adapt and move on.
At time of writing, I’m 41 years old. I’m no longer disabled. I’m a cripple. And I can’t fucking stand it. I loathe it with a passion and I’ll tell you why.
Since 2016 due to a yet undiagnosed condition, I have been suffering chronic nerve pain down my right side. It causes burning, lightening pain through my lower jaw, my neck, my shoulder, my back, my hips, my right leg, knee and foot. It also causes inflammation, redness, swelling and fluid retention. At the same time, I have right sided tinnitus which started when the nerve pain did – and hasn’t stopped. My ear clicks, pops, burns and turns red on a regular basis. My neck clicks and pops, I get screaming headaches, my right eye waters and droops, my nose runs, and I twitch like no one’s business.
At first it was thought I had TMJ/TMD disorder but after 18 months of treatment with my Dental Surgeon it came up a bust and after an MRI of the affected area, it was discovered that my jaw on both sides was in perfect working order. Consequently, it was back to the drawing board to start again.
I can’t dress myself without help. I can’t put my shoes or socks on. I can’t bend over less I hurt myself. There are days simple things like going to the bathroom or having to get in and out of the shower can take upwards of ten minutes because of the ridiculous amount of pain I’m in. I have to wear a knee brace and, for the better part of 12 months I’ve had to rely on crutches to get about because I can’t put any pressure on my right side. Sometimes even getting out of bed hurts like a mother f- and I just want to cry. It’s ruining my sex life. Most of the time I’m in too much pain to do anything. On the odd day here and there, that Hubby and I can have sex – We’ve got to be careful less something triggers and I’m in pain again. I can’t walk without help. I literally cannot do anything without help – and it shits me to fucking tears.
Out of necessity I’ve had to cut back my working hours – from five days a week to three – which means less money and that’s hard. Medical appointments are not cheap and having to pay for them on less $$ is taking its toll.
I’ve thrown everything I can at this. And I mean everything! Every pain killer, every cream, every medication, heat packs, ice-packs, alcohol and out of sheer desperation (and lack of any other options) – Marijuana. Now please, no judgement. It was just the once and it didn’t really do anything. Ok? Good.
It’s not like I’m sitting around on my ass though and feeling sorry for myself .. even though, I’ll admit there was a lot of that in the beginning. I’ve been through a process of elimination in relation to who I have been seeing for treatment. I’ve seen GP after GP, Specialist after Specialist and everyone else besides. I’ve gone to E.N.T’s, Chiropractors, Dentists, Optometrists and Physiotherapists that only focus on one area of the body. I’ve been x-rayed, had ultrasounds, CT- Scans and had MRI of the head and jaw. I’ve had more blood tests in the last two years than I’ve ever had to have in my life…. And it all came to naught. I heard everything from “I’m sorry, I have no idea what this is” to “This is outside of my expertise – good luck”
Being a cripple is hard. You’re either looked at or looked over. People don’t take you seriously. You seem to fade into the background and cease to exist. People pity you and give you that patronizing look of sympathy while they ask you, “Hey… Are you OK?” Do me a favour will you? Please stop asking me that. I’m not Ok. Everything hurts, and I just want you to leave me alone, you patronizing fucker!
Being a cripple has made me angry. It’s stolen my life from me and I want it back. I began the fight for my life after an incident in January this year. When my pain levels were at an all-time high, I had reluctantly resigned myself to life in a wheelchair. Christmas 2017 Hubby and I purchased a second-hand mobility scooter and the wheelchair was part of that ensemble. We were out running errands at our local shopping centre. While there, I decided I needed my glasses adjusted as one of the arms was loose and needed tightening. We went to OPSM and waited. We waited and waited and waited and waited. While we were waiting our turn- the staff were blatantly ignoring us and severing everyone else around us. After waiting for close to half an hour – we left. Hubby in a furious ‘I want fucking heads on sticks’ rage and I close to tears, feeling both humiliated and embarrassed because I’d been treated like the one thing, I never saw myself to be – A cripple.
Later that night I took to social media – mainly twitter – to express my anger and disappointment over the situation.
And then, the strangest thing happened. Instead of a well of sympathy and empathy that I’d been looking for – I was told about ‘My Peak Challenge’ and that ‘I should join because it’d be worth it’ and so, in February 2018… I did just that and became a Peaker. The day after I joined, I made the decision that I was going to get my life back. Being disabled, I could live with but being a cripple, I could not!
Long story short (and it is a long story. This blog has gone on long enough I think LOL!) I began researching my symptoms. I found decent GP who listened to me and didn’t fob me off. They then referred me to an Osteopath. After 5 sessions with her I was, at the very least, able to walk with a cane. Then, during one session she asked me what I wanted to get out of her treatment. I told her I wanted to ride a bike. That was the goal. She then suggested I see a colleague of hers who specializes in helping people with chronic pain. So, I did. I’ve been seeing my Osteopath since March and my PT since July. It’s now November. I can get around a lot easier, I’m getting stronger, I’m able to do my own version of the MPC workouts (They’re very heavily modified for obvious reasons) It’s a slow process, but I feel I am starting to get results.
Due to my persistence (Read: Bugging the crap out of) of both my GP and Dental Surgeon, I finally have a referral to see a neurologist on Dec 4th, 2018. Hopefully, they’ll find what’s causing this and find the proper treatment moving forward.
My ultimate goal now is no longer wanting to ride a bike. It’s to be back up on my feet, relatively pain free without having to rely on anyone or anything for help. I want to be able to take back all the things being a cripple has robbed me. My independence. My self-worth. My self-esteem and confidence. I want to be able to dress myself. Put my shoes and socks on again without help. I’m no fool. I know that whatever this is, could possibly be permanent and I’m willing to accept that.. to an extent, I guess… but I’m sure as hell not going to let it beat me. Being a cripple is shit. I hate it.
Finally, you know how I said something happened that made me change my mind and write this blog?
That something was a response to a tweet of mine by none other than the founder of MPC Himself, Sam Heughan.
I was telling a friend on twitter how becoming a Peaker has changed my life and how it is helping me get back up on my feet. He saw it, replied and I haven’t been able to wipe the smile off my face since.
So, there you have it. The differences between being disabled and being a cripple – according to me.
In closing, I will say this… Even though being a cripple is not great, it has taught me the value of perseverance, guts and determination, to never take anything you can do for granted, to never take no for an answer and never stop fighting.
Thanks for reading,