International Day of People With a Disability – some thoughts

 

Today, Friday December 3, is International Day of People with a Disability. My physical disability is obvious and has been since birth. I was born with spina-bifida (myelomeningocele, the most severe grading). I have used a wheelchair since 5 years old and will require the use of one full-time for the rest of my life. With that much of my disability, I am genuinely fine with it, especially at 35 years old now.

Now I don’t want to come across as a grumpy person here, though if you ask my mother, I still have my share of grumpy moments. However, I am not very excited at this year’s International Day of People With a Disability. I am holistically just tired. Recently I had a very close scare with a very serious physical health issue (I’m fine but only just!). That alone has left me exhausted and mentally scared. I’m a higher risk for most things, including covid, which we are all aware of now.

Not much has seemed to effect systemic changes for the disability community at large or even for myself at an individual level. The disability pension has not changed in 10+ years, yet a quick trip to the nearest fuel station will tell you cost of living is going up quickly. As are the prices of food, rent and other basic necessities in life. While on this, we need to come together to co-design and modify workplaces to accommodate people with disabilities. We are 20% of the population. We are more than just wheelchairs and walking frames. We are deaf, blind, mute, mentally ill and sometimes we have invisible to the eye disabilities. But if you look long enough, even they will be visible.

I am blessed that I do have enough health now to be able to work part-time, especially with the aid of the internet allowing me to do some work from home when my health isn’t quite right at the last minute, which happens a lot. What we require is a potential employer to look at me like one did in 2016 and ask what my health issues are and ask how they can help me get the best out of me. I’m happy to say that person is still a friend.

We need to slow down and take a minute to simply ask how you can help us get the best out of ourselves and life in general. My generation needs to stop staring at our phones and look up and have a small (I’m talking 3 minutes) conversation with disabled people. You do have time for this as it will save time for everyone in the long-term. We are very capable of communication. Access and inclusion is not too bad here in Perth where I live, but it can be better always.

If healthy/non-disabled people helped us with this, we could fix this so much easier and then we may not even need dates like these to showcase us, which to be honest I find a bit weird.

 

Giving up is not an option,

 

Perry

"I'm Not Okay, I Promise." - My Chemical Romance

 

I’m Not Okay, I Promise

 

Hi, my name is Perry Cunningham and I am not okay. I guarantee you did not hear anyone say their name followed by I am not okay today. Well, if you know me well at all, you’ll know I am softer than butter emotionally. You’ll also know I don’t bother trying to hide or lie about my emotions. My current psychologist loves this and says it makes it simple to work with me.

Today, September 9, in Australia, is RUOK day. Like, seriously? Do we need the Federal Government creating a campaign to tell us to check in with people on a certain date? Apparently, we do. I find it extremely insincere and cringeworthy and frankly, I hate this day. As I said in the opening sentence, I am not okay. But before we even get to that point, we need a definition of okay. I get told a lot that it is ok to not be ok. What does that even mean? I’m not sure. To me it sounds genuine enough for people to state there’s nothing “wrong” with not feeling ok. That much I can agree with.

If you have seen The Green Mile, there’s a scene where the guy on death row is talking to Tom Hanks and he simply looks him in the eye and says, “I’m tired boss, but mostly I’m tired of people being ugly to each other.” That has been me for the last 2 years at least. 2019 for me personally was hell on earth. I had at least 3 very big traumatic events (2 deaths, one relationship breakdown) and I still live with one of those events in my head daily. As a result, I am not okay. I am on 2 different medications, in psychology fortnightly and my gp whenever I need and finally have a diagnosis of C-PTSD. That means I live the movie of the trauma in my head daily. I need someone to change the channel, basically.

All this to say, I am not okay, even in the most basic definitions. Even the sound of my 1-year-old chihuahua barking freaks me out these days. Yes, I still get out of bed and I function in autopilot because at 35 years old, I feel like I have no other choice really. Especially due to the fact I live alone.

I don’t write this for pity or sympathy as I hate both of those things. I write this to plainly state that I am not okay. Safe but not okay. And to try and ask us all to re-think RUOK day, at least in Australia. We should be asking are you ok to our friends and family every day. But especially be asking this question to those in our lives we know deal with a lot and seem strong. Because as someone in this box, I guarantee you they’re tired, boss.

"They lied when they said the good die young" - Anberlin, Godspeed

 

“They lied when they said the good die young.” – Anberlin, Godspeed

 

I only discovered the song Godspeed by Anberlin in 2007, where later that year I would face and survive septicemia, where I would discover the true meaning of the title here. However, that time of my life is not the focus of today.

Today, August 29, 2021, marks exactly 21 years since I had a full spinal fusion in Royal Perth Hospital. I was 14 years old, and we had already had to cancel the pending surgery twice as things were not quite ready, including my own body.

I was born with spina-bifida, which can include a list of issues up to and including severe scoliosis. In my body, my spine was so badly curved that by only 14 years old, it was estimated to be curved at 120 degrees to the right. It was estimated by my orthopaedic surgeon, the great Jack O’Connor (google this name, seriously!) that I would only have 6 months of life left had I chose not to risk the surgery at all.

I had to undergo a whole lot of medical testing just to see if I was physically strong enough to deal with such a large operation. Later I would learn there were 2 surgeons tag-teaming the 12-hour ordeal as it’s physically impossible to ask that much of one surgeon. I had no idea about that until only recently, which makes it more ridiculous that I’m here 21 years later reflecting on it.

We, my surgeon, mother and I, signed the paperwork for consent with all the risks laid out to me, up to and including a 60% chance I wouldn’t survive the operation itself, an 80% chance I won’t survive the week post-surgery. However, in his honesty, Mr. O’ Connor did tell me the chance would be 0% of survival if we didn’t at least attempt the surgery. As someone who finds math a very simple thing, I remember being in his office in RPH and stating that I’m happy to go ahead with it, if he’s the one doing it and knowing that 40 is a lot higher than 0. I also signed the consent with one condition: they made a way for me to be able to watch the AFL grand final. I was not joking at all and to their credit, I watched the AFL grand final and still remember it.

So fast forward to Tuesday, August 29, 2000. The day I would literally have to face the fact I could die today. Or not. Well, I clearly didn’t. How? I really can’t tell you. But what I can tell you is life is ridiculously strange. I remember my surgeon coming to see me in my room at 5am and asking if I’m ready. I said I am not, but I never will be to face such a thing. He said I would see him later that night. I appreciated his positivity but could tell it was sincere and strong. I took that with me and off we went into the surgery.

So off I went into the RPH theatres, apparently. If you don’t understand that was sarcasm font, you have clearly never met me. Duh.

I remember 4 things of that first week: 1. The fact I was somewhat awake and not dead. 2. My uncle had phoned while working in Tanzania (west Africa) to see how I was. 3. A nurse in my care neglected me for an entire shift and my surgeon dealt with it. 4. My mother on that first night, even with me lying in traction (completely flat on my back), hand-fed me a roast chicken dinner. I clearly remember that meal and to this day, it was one of the strangest and best meals of my life. Basic medical science says if you eat anything under that much physical stress, you’re a high risk of choking and dying. Therefore, I was instructed to be nil by mouth. Apparently, mum said something along the lines of “he will be fine, he’s hungry, I’m helping him eat.” I was fine. To this day I trust her judgment with everything due to that one thing.

About a week later I would be transferred to the spinal unit at Shenton Park. I became a lot more alert and have clear memories of my uncle and another friend coming up nearly every night and sneaking in outside food. For that I’m always grateful in hospital as it’s one thing that’s barely improved.

Then it was time to go home. Like seriously? I’m going home after my full spinal fusion and I’m ok. Not a quadriplegic, no loss of brain function, totally fine.

I was well informed about the physical ordeal this surgery would have on my life, including never being able to ride roller coasters or horses again. However, I wasn’t well informed about the mental side of dealing with such a big thing. For the next six months, I would have to wear a brace that was extremely tight, have mum assist with all personal care, be lifted in and out of bed and basically all I could do myself was eat. One thing I grew inspiration from was having a tv at the end of my bed (thanks mum) and watching the Sydney Olympics, including Freeman winning the 400m gold medal. It was ridiculous. If she could do that, I can deal with this.

For the next 21 years, that’s pretty much how I try and live my life now. I do still look at professional athletes in that light – to a point. I’m well aware they’re just like a normal person, just with a really cool job and a ridiculously healthy body.

So to sum it all up, thanks Mr. O’ Connor, Mr. Ker and team. I hope you’re both enjoying your retirements well.

 

“Life is short, I want to live it well.” – Switchfoot, Live it well

My Mate At 48

 My Mate At 48

I'm not telling the internet my exact address because duh. However, for the purpose of this piece of writing, my house number is 68 and my mate's house is 48. Near on 7 years ago I moved into where I am now and I love it. I often saw this older man outside his house, in his front garden full of roses, nice grass and other plants and flowers. He is often seen using the tools necessary to do it all himself.

After a while of seeing him and admiring, we would start to talk to each other about life and things. Turned out we have a lot in common, despite a roughly 50 year age gap. A very nice human who often gave me home-grown fruit, let me pat his good dog (all dogs are good) and often had a nice word for me and some garden advice. I love how he would be so independent, even as he got older, he still maintained doing it all himself or with his wife's help, nobody else.

That's until recently. A couple of months ago, his wife would tell me he's been battling prostate cancer and unfortunately it returned with a vengeance. The doctors put him on a stronger medication with a plan to see how it goes in 3 months. I bumped into his wife while walking my puppy at the nearby park last week. I asked how he's going and she would tell me the medication hasn't worked at all. He's become gravely ill and has at the time of writing, about one more week left of life. 

So, to my mate at 48, who's name I never knew, thank you. Thank you for being a good mate of mine for the last 7 years of your great life. You've always been kind, loving and generous towards me and you have helped me in ways I am struggling to find accurate words for here. You always reminded me of what is important in life. Cheers to you for a life well lived mate. Rest easy.

Perry, your mate at 68.