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Back in '08-'09 I did in New Zealand my Diploma in Elite Sport Performance at the trail end of my professional track cycling career (retired early from a ultimate frisbee injury). I'm still paying off that student loan.
May as well put my money's worth to use.
Wheeliversary
Yesterday is what I call my wheelchair anniversary. on the 28th of January last year was the last time I jogged. My mobility issues were not overnight and for a while before diagnosis, I was trying to hide it to stay strong for those I was focusing on and supporting.
On the 28th I was running a group at the local pride march, I don't actually have a single photo of me that day, I was too busy organising stuff for people and filming everyone else, even the group shots didn't have me in it. But by this day my mobility had deteriorated a lot, I was typically walking down to hundreds of meters a day instead of my original ~7-11 kilometres a day.
(on a side note, like all communities that have bystanders that happily troll and complain, claimed I was using the day to focus everyone on me while at the same time i was trying my best to be invisible to hide the pain, oh how wrong they were lol)
Why this day is what I call my anniversary is that after the pride march float I was running, I was in so much pain from the few hundred meters of jogging that i did filming it, I was crying on the ground at the end, fearful that it was my last chance of exerting exercise in that way. Not long later I got my first wheelchair and was in hospital where they found the issue and started to begin accepting this new norm.
I am still thankful for the community coming together to help me out. You held fundraisers for my long term wheelchair without me asking and it would not have been possible without all your help. I'm not going to, nor have let this slow me down; while my body may have changed in the past twelve months, my strive to help the community has not.
Over the past year my mobility continued to decline and thankfully, I can still "walk" albeit down to ~50 meters a day. I have specialists monitoring things and usually telling me to push myself and not to keep burning myself out. This coming year is the next step in the plan, in fact, tomorrow i begin my fabrication welding training and my career change will be properly underway.
As a photo comparison, I've found the closest photo of me to the date and recreated it today to show the subtle changes I've had this past year.
Everyone is famous to someone in this world
- Myself
What kind of fetishes do you advocate??
I run several projects in Australia and online for the Pup Play community, the largest project I run is the website www.pupplay.info and helped found several social support groups in Australia, held some national events, been interviewed on local radio, newspapers etc
Welding Wheelchair Building - Stripping
Powder coat stripping of my old #quickiegt #wheelchair frame is almost completed. Sanding and polishing to go and still need to recondition all the other parts.
Found that a methyl based paint stripper worked on the aluminium powder coat and was slow work, that's about 4 hours over several days
New tattoo I got for myself for Christmas. This is a raindrop of my own design. It'll have a it more details in the future but for now, the outline is completed. This is to represent a life quote I regularly tell myself:
"I am but a raindrop in the eternal storm of chaos that we call, the universe"
It something poetically symmetrically that I like of the duality that life is, that were but an infinitely small speck in the wide open world, but still important, it takes one raindrop to begin the break of a drought or famine after all.
0 Likes, 0 Comments - Taylor Cook (@wheelieweirdwheeler) on Instagram: “Sitting in the same chair all day, every day, soooo overrated #whe
Sitting in the same chair all day, every day, soooo overrated
Ticking off a #nationalpark off my list and a quick review from a wheeler. #morningtonpeninsulanationalpark #wheelchair #wheelchairuser #wheelchairlife
The park is fairly expected of a national Park here in #victoria, there is disabled parking. Wheelchair friendly toilets, the main attractions of the lighthouse and museum are accessible enough with clean gravel paths (that won't bog u down) and some concreted paths. While not all walking paths are wheelchair accessible, the boardwalks have to scale around cliffs so I don't expect it to be ramps everywhere. To see the clean ocean fresh from Antarctica is refreshing along the craggy coastline. There are viewpoints that you can reach so don't feel like your stuck from only the carpark.
Keeping My 2019 Accountable
While this is more to hold myself accountable to my goals, may also help to take a peek into what rattles between my ears.
Its been a hectic year to say the least, definitely one of the most life changing experiences I’ve had and a lot of plans this year fell apart pretty quick. If you want to see what I have been up to in 2018, you can at complexkinkster.tumblr.com
Here’s a list of my top goals for 2019, I have more, but these are the most influential ones to help reach where I want to in life:
Go back to school to learn Welding so I can work more towards being self-employed again.
Finish writing my pup play book so it can be launched by the end of 2019
Finish the first phase of the pup play community history archives
Finish designing my leather gear to sell.
Get VIC-PAH incorporated so I can step down as leader and have a new team of volunteers run it.
Get Nerdy Doggo established as a legal non-profit entity so I can get more funding options for more community projects
Get my club membership for Archery
Have the mobility equipment I need so I can do busk walks, hiking and camping again.
Get to do my first ever holiday for myself, by myself.
Explore more of my home state of Victoria
Add more to my tattoo sleeve
Get an updated computer to replace the one I sold in 2018
Maybe afford to have my Mohawk back?
Keep doing gym and pool and maintain body weight at 75kg (a.k.a gain upper body mass as I try to reduce loss of mass on my legs)
Get busy vlogging for youtube and filming
Reach the goal of 200 new resource articles on my community websites. (Yep, thats 4-5 every week)
Only a few goals, right?
PAX AUS 2018
So after getting an emergency tooth pulled out earlier the week then it getting infected, on a mild spur of the moment, I decided to try out PAX again. I went back in 2015 but this would be my first convention as a wheelchair user and didn’t quite know what to expect. Yet the annoying, ugly and eventually good things happened.
Cosplayers are the nicest people at a convention like PAX, they know to be aware of their surroundings, usually the first ones to notice me and help me navigate a crowd. (Since when did i grow back muscles!? )
Was surprised that they gave wheelchair users a “medical pass” it let the convention volunteers and booth runners know to approach and see if i need any help when trying to get to panel events and a lot of booths let me skip the queues with it as well.
why wait for an elevator when you can use the escalator right away! No chair is gonna stop me being normal.
Up until the final day the crowds were moderately considerate. Wasn’t until the final day was everyone pushing thru anyone in their way and happily push their way in front of me to block my entire view of things happening.
However Friday was the real stab in the heart incident. A guy at the HP/Redbull booth turned me away from trying their wingsuit simulator by saying to me “your too much hassle.” Disgruntled and stunned i went off and thought ill try again later in the day after a DnD for dummies panel speech (which I loved) afterwards i was hoping that maybe they’ve had a staff change and try to talk to someone else. So i did and they turned me away again, but this time the lady i talked to said it was too close to when they are closing for the day. I could only afford a Friday pass so i lost my shot of trying their wingsuit simulator. I literally left PAX feeling very defeated and trapped in my own body and circumstance.
To me this hit me hard, so with some context, I love the outdoors, which the amount i spend off the beaten track since ending up in a wheelchair has gone to practically zero. And even if i found a wingsuit in real life, learnt how to use it and charter my own plane; ill drop like a stone in water. My legs wont have the control to do it. So to try it in VR in a one of kind simulator is pretty much a once in a lifetime opportunity.
After some encouragement for a friend that I should voice up about the incident of being told I’m too much of a hassle when the booth went thru the effort of installing ramps and lifts to get to their simulators, i went to twitter, no expectations for anyone to listen, let alone respond.
By the next morning PAX AUS and HP themselves had both got in touch by the next morning. Omen by HP offered me a pass to come back to PAX for Saturday and Sunday, which i took their offer and went back. Not only did they apologise but went out of their way to make up for the incident.
It was a surreal experience and probably hit me harder than most people, I’ve worked with VR gear in my game design projects since waaaay back in 2010 before most people had heard about it. I know how much VR can help break down physical barriers and this sure broke barriers.
They didn’t see it but i found it hard not to cry while wearing the headset, the feeling of freedom, not stuck or defined by my wheelchair. I even had to roll off just to let it process and knowing that’s the most amount of outdoor off-road activity I’ve done all in 2018. It was a profound moment for me not by their design but it wouldn’t have been possible without them. So there was a happy ending to this heartbreaking incident!
I even spent almost two hours with the head of marketing for PAX AUS and went around the convention space giving feedback on problems and ideas for solutions which he was very receptive about, which im excited to see what happens next year!
Mohawk Farewell, for now.
My #mohawk the past few years has been amazing. I seriously don’t know why I didn’t do it sooner. But it’s reeealy high maintenance.
For me to keep with physio, exercise physiologist and general chronic nerve pain management, I need to take my fitness to the next level. I can’t afford both.
I don’t want my #wheelchair to hold me back in life, or define me. And thats why I need to put my health first so I can roll with the punches life throws at me *pun giggle* (at Melbourne, Victoria, Australia)
Wellbeing is more important than something just for looks, so very soon my mohawk is being retired, hopefully for only a few months till I can budget the fortnightly trip to the barber. Instead, the money is going to be spent on an aquatic centre membership so I can use a hydrotherapy pool and gym so not only to reduce the muscle wastage in my legs but to improve my back and core strength to reduce the pain I get from my body changing so much this year.
#showerthoughts most people go to the grave with a fortune, a fortune of ideas, dreams and passions, many found, ignored or not even searched for. Wouldn't it be a full life if it's an empty grave? All ideas explored, tried, mistakes learnt from, people helped and good intentions inspiring others, all that's left is completion. #outoftheboxthinking
No one has more ideas, dreams and passions than the next person, and that what makes everyone normal, equal and extraordinary at the same time.
Want to buck the trend, not be a sheep following the herd? #takerisks people may call u controlling, call you egotistical because they find it easy to take tall poppy syndrome towards those who take initiative and accept failure as a valuable lesson.
Your candle does not burn brighter by snuffing out others. Helping others flames burn brighter makes the world a brighter place.
Remember your roots, stay humble, take initiative and help others, because at the end of the day, your the one that sleeps with your conscience, internal validation of giving your all, outbeats any external praise. #advice
Here in #melbourne, if you have a permanent disability you can apply for this little card. After many hoops of confirming my mobility issues, I finally got it. Free travel in the state of Victoria for me!
Cost of getting to all my specialists appointments is now zero. A big sigh of relief
And no, I'm not usually that pale :p
Sketch #3 is a great way of demonstrating how an abelist society may have caused some people with non-mainstream issues to not be given a fair chance, but it doesn't necessarily mean their wrong until they try to intentionally stop progress to treat someone second-rate.
A little creative thinking can change traditional ideas to not only become relevant to modern day, but can also give everyone a fair go.
P.S this isn’t an attack on Christians, you may see I haven't blamed you for anything, I’m an just using a humorous way with recent marriage equality debates globally to paint this abelist society issue in a new light.
Sketch No.2 to address the colloquial assumption that this who sit in any chair, whether by choice or have to, are somehow not as hard workers as those who don't. Which as any wheeler knows how dirty their hands can get, isn't true.