Dear Perth Wildcats

 

I am exactly one day younger than the current captain, Jesse Wagstaff. The only 3 differences between him and I are around 60 kg, 60 cm and 6 rings. I have followed the Wildcats since I can remember. Watching guys like Watto and Ellis in the old white or gold jerseys, before turning to the likes of Grace and Crawford in red in the 90's. I am getting old! One thing I will add at this point is I was born with spina-bifida. When I was around 8 years old, I was introduced to the sport of wheelchair basketball. I was immediately hooked! Sure, watching Ellis, Watto, Grace etc on tv is great. But it does something else for mental health when someone sees something cool and can participate. Playing the game, even at the state league level, kept my mind on something other than the battles of life, even if we lost the game or I played badly that night. I would end up playing until I was about 33 years old. 

When I was 11, I needed a plate inserted into my left hip. This would be my first surgery where I was informed and included in the entire planning process. This was also the point where I was told from my orthopaedic surgeon I will never be able to walk, much less play pro sport. He went on to say that neither will 99.5% of people play pro sports either. This one was a tough pill to swallow for me. It took me years to get around this. But when I eventually did, I turned my attention from playing to the possibility of being the coach or CEO for Perth Wildcats. Over the next few years, life happened and threw a lot of curve balls my way. I would lose focus of this main dream of mine. Until a lazy Friday afternoon in August 2016.

I was scrolling twitter after a mental health collapse only a few months after my grandfather died. His loss left a devastating blow to me and I had nothing left to give, much less a reason to get out of bed. That was the one thing I desperately needed at that point. On this Friday afternoon, I saw a tweet from the Perth Wildcats. They were seeking applications for game night volunteers, ahead of the upcoming basketball season. My brain came alive for the first time in a long time. I can do that, I said to myself. I scrapped together a bad version of my CV, frantically messaged a couple of friends asking if they would be a reference and submitted an application for the role.

A few days later, I was offered a time for a first interview. I found the venue, the Bendat Basketball Centre, where I had never been before. I then stumbled my way through the first interview. That is still my opinion of this one. I was a nervous wreck. A few days after this, I was emailed an offer for a second interview with their CEO. 

The day of the interview, I needed to reschedule a medical appointment and gracefully, they let me, even at the last minute. It was a rainy day and I dress practically. Therefore I was not wearing my suit, but rather my waterproof Fremantle Dockers jacket. Even with the rescheduled appointment and everything flowing on time for me, I still only just made it in time. Through a reasonably lengthy interview, I would be offered a voluntary role, not on game night, but in the administration with Perth Lynx, the women's team. I would then be within the Perth Wildcats and Perth Lynx office every week throughout the 2016/2017 season, contributing my skills and effort wherever required on the day. It showed me the true hard work that goes on with a professional sports organisation. It hass also given me a lot more grace with organising my own Dockers memberships! Within this role, I would be challenged, trusted, pushed but ultimately, an experience that will positively stick with me until the day I die. One of my biggest learnings is the importance of having others things to get away from it when the stress gets too much. I learned that these people are just normal people with cool jobs and incredible discipline. They hurt, stress, mess up just like all people do. 

Mentally speaking, I am an empath, meaning I feel too much. This means I need to control myself around high stress situations. No point telling me not to feel emotional. I am softer than scrambled eggs and I am at peace with that. It is what makes me me. As a result of the above mentioned, Wildcats and Lynx basketball is not just another game for me, like other sports games are for me. I still know a lot of people within the Wildcats organisation. 

This particular season had a huge amount of change and challenges. New ownership, new coaching staff, something called Covid 19 and as normal in basketball, some new players in and old players out. This outstanding club has made playoffs for 35 years in a row, since 1986, the year I was born. It's literally all I have ever known. Life, death, taxes, Wildcats in the playoffs. Due to a few unexpected losses, they found themselves in a difficult position: a must-win game against one of the most potent offenses in the league, minus one of our most efficient offense players, due to injury. Win and the streak continues and we all breathe a sigh of relief. Unfortunately they lost. By just a couple of points, in overtime, no less. I couldn't hold it in. I cracked like a raw egg and the tears flowed, even sitting right here watching from my laptop at home. It was a tough and bitter pill to swallow. For all the reasons I have said, for me, Wildcats and Lynx basketball is never going to be just another game again. I immediately switched my thoughts to some friends working there for their futures. Such is the high stress nature of pro sport, especially when something like a 35 year playoff streak is over. It was a rough night sleep for me. 

A mate whom I have worked with there messaged me last night. He said he is ok because he knows the nature of pro sports. I hope this statement is all there is to it. This has helped me resolve it as well, so thank you for that mate. 

To this day, I still hold on to a dream to be the first disabled coach in the NBL.

To finish, my hope now is in a positive way, this loss can lift the heavy pressure of continuing the playoff streak off the shoulders of everyone. It's a new day to start again. Bring on season 2022/23! 

Giving up is not an option,

Perry

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.

“Four walls, a wash basin, prison bed” – Cold Chisel

 

“Four walls, a wash basin, prison bed” – Cold Chisel

 

I used to have a friend whom I could relate all my medical struggles with. No subject was off-limits, even though this friend is female, and I am male. One thing we often found together would be hospital admissions. We joked that we were in jail or prison, depending where you are from. The thing is, if you have had a fair amount of time in hospitals and have even a vague understanding of prisons, you should be able to understand the correlation of the two places.

For all the things I have been through medically, I am still a terrible person when injured/sick. That’s my own opinion of myself. The song ‘Restless’ by Switchfoot comes to mind here. I get irritable very easily. My last surgery only on August 22^nd comes to mind. I had neurological symptoms for about 2 weeks before I finally called an ambulance around 6pm on the 21^st because I felt like I would pass out and potentially not wake. I felt too faint to get anywhere under my own strength, even struggled from bedroom to bathroom, maybe 5 metres. Ambulance arrived and took blood pressure first. It was 155/90, which for a man of my size is very high. Two paramedics looked at each other as if to say, ‘we need to move it quick’. I knew when I saw that I did the right thing in calling an ambulance.

I got to the hospital and we would wait a fair while. But once I was moved around to the ED, things moved rather quick. They got a good handover from the paramedics, for which I am grateful. Immediately checked basic observations, which were obviously inconsistent and concerning. Then within a few minutes, there was blood and urine samples taken and an IV line put into my arm and a bag of iv fluids hung up. Then one of the ED doctors did a basic vision test where the patient is instructed to follow the doctor’s finger, moving only their eyes. I knew I would struggle with this. My vision the last few days was terrible and headache pain score was seriously 12/10. His finger was far left but my eyes went right. When this happened, he said it’s officially a neurology case and he wanted an urgent CT of both the head and abdominal shunt as soon as possible for confirmation. I was simultaneously scared and relieved in the same breath. Relieved because I knew I did the right thing in calling the ambulance and being in the emergency department. Scared because that one symptom proved to me, I would need my 8^th shunt revision surgery, and what’s more, in the middle of Covid-19 pandemic. Would I go home? No clue. Seriously. By about 4am he came back to confirm my shunt had problems in multiple spots, from neck down and that I would need surgery today. Me: you mean now? Doctor: no, we will operate during daylight hours, between 8am and 5pm. You’re on IV, 30 min observations and right outside the nursing desk so you’ll be ok. Try get some rest. He came back a few minutes later to tell me it looks like I will be in surgery for hopefully midday. The theatre staff came to get me at around 10am. Most of the preparation was already done, so I was moved down promptly. Only thing I didn’t have was a proper chlorhexidine wash, but that is easily fixed in surgery. I was prepared at the 4am bedside visit for multiple surgical incisions this time, as he had told me there were multiple issues with the shunt this time. I was still awake in the operating theatre, something rare for me. They had music going and it looked like as happy place as it can be, for someone about to undergo life-saving neurosurgery in a pandemic. One person even had a Marvel hair net, seriously. I managed to get to sleep quick this time, most likely because I was already so unwell.

I would wake up in the recovery room and I took note of one thing. I only noticed three people in the room: myself, nurse at my right hand controlling my observations and pain level and a nurse walked past my left, bragging about her chocolate stash. If I can pause here and say one thing to medical professionals, please do not do this to patients straight out of surgery. We are all tired, hungry and sore. Either share the snacks or keep it to yourself, please and thank you.

Later that night I would be moved to the high dependence unit. I was in normal pain levels for this kind of surgery and they didn’t bother offering the bottom level painkillers and went straight to the strong ones, something rare these days. Catering would offer dinner. Me being me, I obviously wanted it, especially because I hadn’t eaten more than a snack in days, literally. Nurse was quick to advise not to eat as I had abdominal surgery just now and eating heavy food quickly post-surgery may cause further issues. I gave her a look as if to say I’m hungry, sore and tired and don’t care about consequences. We met in the middle and agreed on eating the soup. It went down fine.

Next day I was moved to the neurology ward as I started feeling a lot better. This is when I would wake a lot better and notice just what happened in theater. Physios were quick to come in, as always, and wanted me to get out of bed on day one. Thankfully, nursing staff overruled them and said not today. My head felt fine, but abdomen was still very sore and would be for a week or two yet.

It’s this part of surgery recovery I struggle with the most and the reason I relate to the song I quoted for the title here. I wouldn’t go home for another 3 days, despite feeling like my pain levels were ok, nausea gone, keeping food and fluids down. I would genuinely question why I couldn’t go home yet and became irritable and restless mentally. But obviously now that I have had more surgeries than birthdays, when I calm down, I get it. It took until the Friday morning to have the paperwork complete, enough support in place for discharge but more importantly, bowel to open. Without going into graphic detail, this is especially important when one has had abdominal surgery.

The next ten days, I would go home with staples in both my head and abdomen. Like I said above, the head wound didn’t hurt much at all, other than itching because of hair growth and tangling. It was the abdominal wound that would hurt a fair bit. Thankfully they sent me home with good pain relief as well. I would learn the hard way something I have been told for years: literally everything goes through the abdomen, which is why it is called ‘the core’. Sneezing, coughing, laughing and even talking would hurt. Sitting up and transfers from bed to chair would take a lot longer. I do have a cool scar on there now. I would then question my nurse why I couldn’t go home. She very plainly said, “Mr. Cunningham, you’ve literally just had life-saving brain surgery in a pandemic, and you have spina-bifida, just rest.” She didn’t even have to put any exaggeration on it. That’s as blunt as it could be. I think sometimes even I tend to belittle some things I have fought and won, even brain surgery in a pandemic.

So, friends, family and anyone else reading, therefore I would miss the very last western derby and Damo's retirement announcement. I was simply too unwell to keep my eyes open. Some things are bigger than sport, I guess.

"I'm Back!" - Michael Jordan

“I’m back!” – Michael Jordan

 

With those two words, the greatest male to ever play basketball was back at the highest level for the Chicago Bulls after a hiatus. Some thought he had just retired, full-stop. Some think he quit. Some think he just wanted a new challenge to play baseball and hopefully make the major league, highest level of baseball in USA. On a deeper level, he went away to clear his mind after the sudden death of his father. My point is this: if it’s okay for Michael Jordan after winning his third consecutive NBA championship to state that he is so damned tired holistically he needs to stop the one thing he was dominant in, then it is ok for us to stop for a while as well.

I stopped writing about 4 years ago because of my mental health. Yet I am back writing because of my mental health. Oxymoron? Maybe. Liar? Hell no. I may be a lot of things, but my mother bluntly told me at 14 that I simply cannot lie to her face because I am way too soft emotionally. I do a lot of things in this life. For the last 20 years I have not bothered to even try lying as I am emotionally softer than melted butter. Therefore, genuine sincerity is something I need reciprocated to myself in others.

I have been through some absolute hell these last few years I have been MIA from writing. Some things I will write about; some things I will not. This is for my own self-care. I am going to remind myself whatever I do write about is literally going on the internet, for the whole world, potentially, to read and comment about. Am I comfortable with that? Hell no. Does it scare me? Hell yes. Am I going to do this anyway? Hell yes. I need to come back to this as it is a cathartic thing for me to process and make real the emotion of life. I said to one of my best friends this morning that writing it in black and white will make events real. He quite rightly stated all those things are very real. I have decided to face this mountain, in the words of Jon Foreman.

I was trying to “run”, if you will, from all the things that have haunted me (literally, not even a slight exaggeration) and numb myself to not feel the weight of what I have been dealing with. Whether that is in basketball, books, movies, shows, food, medication, whatever. However, there comes a point where a (hu)man needs to realize they are not invincible, and you can only do that for so long. Being numb to life is not living life well. Therefore, this is just a short one to say I am back writing to assist myself to process my own thoughts and emotions and to hopefully improve my mental health. If you read this, then great. With all due respect, if you do not read it, also great.

 

Giving up is not an option,

 

Perry