mndwontbeatme

[mndwontbeatme]

The Beast.

I can’t sleep… I’m tired, I want to, I need too. I slip into bed with the readiness to fall into a deep slumber… One by one my muscles start to move. Worms are under my skin. Thats the feeling of the fasciculations… Every night they come… Every night they start, I have no control of where and when they will start. Thats the calm before the storm. Then come the cramps.. The fasciculations feel like distant lightning strikes compared to the cramps. The cramps twist and pull the body in away that could make a grown man crumble… Neck, Chest, Abs, legs… all seem to grip in unison.. A feeling of breathlessness… The cramps ease and the faciculations come back… It’s a reminder that my muscles are failing in the fight against the beast. Exhausted I fall into the sleep my body craves.. I dream… I dream of walking, running and playing with my family.. It feels real, I want it to be real. I dream that I’m the last man to wrestle the Beast that is slowly killing me. I dream that no one has to go through what so many have been through already. I dream that my family doesn’t have to go through the pain. I dream of things I took for granted.. The morning the body is exhausted, the mind is a jumbled mess, the heart is broken. The cramps and fasciculations start again. The Beast is trying to break me.. Night after night it comes back.. I wrestle with the bad thoughts.. I hate it, I fight it.. It can’t win, It won’t win.  I wake… I look into the eyes of my children they tame the thoughts, they mend the broken heart, they tame the Beast within… their little eyes are windows to the most beautiful souls. I forget what the night was like when I peer into their eyes.. The Beast is tamed for a moment and life feels normal. It’s a reminder that going through the struggle and fighting is worth all of it. The fight will continue for a long time…

[mndwontbeatme]

That's me, I'm still rowing.. I'm four year's into the adventure from hell.. Alot of hard life lessons rolled into a short 48 months.. This is a picture as I am right now.. Me as raw, as you will see me.. Apart from being a beautiful male specimen of the human race, with the best looking slug any prepubescent boy would envy.. I am in a bit of trouble.. Dingy canoe, up shite creek trouble.. Taking on water trouble.. Cracked hull trouble.. Broken oar trouble.. Sun has gone down trouble.. You get the picture. I get alot of positive comments on how I appear, (it's true.....) It's lovely.. In some regards you wouldn't know I have a terrible neurological disease, to the untrained eye, looks are deceiving.. My mind is still as sharp as it was before (correct me if I'm wrong but, 3×5 still equals 20....) I am the same man inside, peering from the same green eyes that I was prior to my diagnosis.. Although my eyes are clear and bright they are tired from this fight.. I am no different inside.. Mentally.. It's the candy coating that's slowly fading away.. This portrait tells you my story.... My hands.. Atrophy.. Weakness.. Cramps.. I am a Carpenter by trade.. I had a skills base background, able to hit a three inch nail into hardwood with a single blow.. Geez I looked good in my toolbelt.. I always loved creating and building with my hands.. I worked on the waterfront for years doing manual labour.. It was who I was.. A hard working man, a blue collar worker.. I enjoyed hard work.. Now.. My right hand is weak.. My left is going too.. They have become slow.. Very slow for 34 years old.. You can see where the muscles used to be.. Tendons and bone becoming more prominent with the muscle slowly melting away.. Like cotton candy in the rain.. Melting.. Starting to twist out of shape.. I can't hold a hammer.. I can't open a bottle.. Can't even zip up my fly.. It's my body wasting.. Clumsy.. Weak.. Frail.. My shoulders arn't as broad as they used to be, Atrophy has them too.. Though I have to carry a lot more now then before.. I try my best to carry the one's that are in the fight with me, my kids.. my wife.. my family.. my mates and even strangers.. Show them strength.. Provide answers when asked the tough questions.. Show them it's ok to laugh or cry.. Show them how to row.. I can't carry everyone though.. I have moved away from the one's who can't deal with it, I can no longer prop them up.. The one's that find it to hard to confront or how it's even a inconvenience to their life.. I've found they seem to see alot of the negatives and only the negatives.. I am in a situation that every living thing will face in their lifetime.. It puts me in a difficult position, trying to convince someone that's relatively healthy that they arn't dying and that I'm still infact here very much alive.. Fighting.. Far from the state they seem to think I'm in.. At times I feel I have to check my own pulse to make sure I'm not dead.. Yeah.. Nar.. oh wait.. Yeah.. I'm alright. I would hate to see anyone go through a day of what anyone fighting a terminal illness has to go through.. No holidays or breaks from it.. It's a 24/7 gig.. Sometimes to a very tough crowd.. My mind.. My braaaain.. Mental state? Yeah it's good.. It's pretty spot on.. Take the good and the bad days.. I have always found it better to front my troubles and worries then bury them.. If I did nothing when I started to have health issues, I would not of rowed this far.. My mental state would of suffered and in turn the body failed.. This is a huge lesson I learn't prior to MND.. Have a laugh at the absolute shite that your going through.. Life ain't perfect.. Laughter does help.. There is always a time and a place for it.. Face any issues/troubles front on.. I want my kids to be strong mentally.. I want them to share any pain they might be going through, with us and anyone they need too confide in.. I want them to learn from this.. Life is hard at times and it only gets harder if you let it.. Communication is a powerful tool.. I want everyone to learn from what we are going through.. My legs are weak, although you can't see them in this picture.. They are down there dangling.. As strong as apricot jelly.. The dog eyes them off as a tasty treat to bury.. Probably great with Schmackos.. Skinny pin looking things.. Once able to carry me from A, B and C never to the D though.. I now drag them around on my wheelchair.. They swell.. They hurt.. Everything always hurts.. Sitting all day hurts.. Hurting, hurts.. MND... Yeah..... It hurts... It is still worth living through though... Life is worth it.. I'd take more pain for more time.. Alot more.. There is always someone watching you fight.. Watching you row.. Be the reason they fight when their time comes.. No matter how tough you think your life/troubles/dramas are there is always someone doing it tougher then you.. Rowing harder.. Trying to get ashore.. It doesn't make your problems any less important or troublesome.. They are still very important.. It just means if you want to get out of that Shite Creek your in... YOU have to be the first to grab that oar and get rowing.. It's a dark hell at time's fighting MND, Sometimes I feel a burden... I'm always trying to look for positives, looking into the light from the depths of a dark murky mud hole of which MND tries to consumes you.. Peering face first into the light is all anyone fighting MND can do.. The light always shines upon a positive.. There is always a positive or a win there somewhere.. Just got to look in the right direction.. If not for myself, on this day, winning, then one of my MND brothers or sisters.. Anyone's win is our win.. Row together.. It's my Motor Neurone Disease (MND/ALS) anniversary.. Four years down.. Terminally ill.. I am a lucky one, mine seems to be slower then alot of others.. I do feel guilty at times, guilt often plays on my mind.. I wonder if I could do more.. I have no control over what this disease will do to me and what it has done to my body over the last four years.. The out come is still the same for me as everyone that finds themselves in the same dingy canoe as me, the only thing we can do is row.. Whether it be physically or emotionally, you have to keep rowing.. Row for the ones that will be thrown in the same dingy canoe as us tomorrow.. If we row together we can accomplish the impossible.. Motor Neurone Disease will never beat me.. I still have alot of rowing left to do...

[mndwontbeatme]

Morning rolls along the walkboard, Urunga on my wheelchair... I have found the best thing I can do is enjoy my surroundings... Being terminally ill doesn't stop the world from spinning, it keeps spinning... You gotta hold on and keep up with it... It isn't as easy as you may think... This shot I got is a representation of my current diagnosis... No cure... No treatment... A straight line to the finish... We all know what's at the end... I'm hoping my path, like this boardwalk has a alternative to what I see in front of me, over the horizon a new direction... I just have to creep along, one board at a time, until something appears...

[mndwontbeatme]

We are giants, roaming over a miniture world... Beauty is everywhere you look, In everything... Fragile... Wonderful...

[mndwontbeatme]

Shellharbour's shells... My son picked these shells down by the waters edge, these where his favourites... Enjoy the moments that we take for granted, for one day it can be taken away from you in a blink of an eye...

[mndwontbeatme]

Rainbow river... Belinger River, Urunga, NSW, Australia.. A explosion of colour over the horizon made for cracking shot!

[mndwontbeatme]

…Burning Bush… Urunga, boardwalk NSW.. Early morning I took this shot and at the time I had this thought… The path you take in life may produce some deadends… Doesn’t mean you can’t alter your stride and stance… Enjoy the view, but don’t stay looking for too long… Life goes on and another path may only be around the corner… Another option... I have faced alot of potential deadends being terminally ill, Deadends where the view is not like this beauty, I've never stayed at the deadends for too long… I also feel I have alot more options… Options to live or leave… I will always choose to live… I want to live… My path in this picture is on that boardwalk over the hill, over the fucking shit we call MND…

[mndwontbeatme]

A silhouette of a fishermen, enjoying a calm ocean… He may look alone, you can only imagine what he is thinking... Early in the morning… Shellharbour, NSW, Australia.

[mndwontbeatme]

...Rainbow River... Urunga, NSW, Australia... Stairs, to the Belinger River at low tide... Early mornings along the boardwalk and I caught some beautiful colours bouncing off the rock's, timber and water...

[mndwontbeatme]

This photo is one of my favourites.. My wife, son and daughter are in it in the far distance... I feel they are just out of my reach... Motor Neurone Disease (MND) does this... I am here and they are there, everything just out of reach. Slowly slipping away... I feel I captured what the disease feels like in this picture, even down to the out of focus and haze in the corners... Some times it feels dark and grey being trapped in a body that doesn't function at full capacity... Your seeing my world, through the eyes of a terminally ill man... It's frighteningly beautiful sometimes...

[mndwontbeatme]

Humpback whale playing just off the point… Nature’s candy right there. Whale yoga. Playing for hours, was lucky enough to catch these shots..

[mndwontbeatme]

Purple water Lily.. This was taken at Urunga wetlands, NSW, Australia.. It reminds me of my wife and myself.. You shine bright and beautiful even when its dark around us.. Our reflections can be seen even in dark times..

[mndwontbeatme]

I try and capture the beauty everywhere I look.. A split second and it's over.. This shot was taken while I was watching the surf.. I enjoy sitting in my wheelchair watching the world live around me.. This Pelican made flying look incredibly easy.. So simple.. So beautiful.. It flew straight towards me then turned, sweeping away.. Thats when I got this shot..

[mndwontbeatme]

Urunga boardwalk, NSW, Australia.. I took this photo early in the morning.. My family and I were out to catch the sunrise.. Easy wheelchair access for me ment I could get some great shots.. Reflections are everywhere and I feel my actions reflect on my kids.. This was the start of a beautiful day..

[mndwontbeatme]

This is me.. What I see.. I’m not sure how long I’ll be able to do this.. I want to share how I deal with a terminal illness.. I have Motor Neurone Disease.. ALS.. It’s brutal.. I have a passion for photography and life.. It can be tough but I want to live and show my kids and wife the beauty I see everyday.. They’re the reason I love life.. They’re the reason I want to live..