Every family has one, the brother who repeatedly climbed to the
top rung of the ladder, the cousin who played with matches but
never got burnt, the kid with an inborn, insatiable appetite for risk,
always on the lookout for the next rush.
That’s my little brother, Mike.
Even when he was young he’d be jumping his bike as far as he
could or climbing to the top of every tree he saw, while I watched
horrified. As he got older, he got bolder. He loved any form of
physical activity and was always unsuccessfully trying to drag
me along, be it jumping out of a plane, snowboarding, skating,
knee-boarding - basically anything that got his heart rate up.
In September 2012, Mike was diagnosed with Motor Neuron Disease, ALS, also known as
Lou Gehrig’s Disease. We knew it was terminal with no known medical cure. It destroys the
neurons that send signals to the different parts of the body while keeping the mind perfectly
intact. You become a prisoner in your own body as it aggressively renders your physical
form useless. On January 28th 2015 my beautiful, strong, fearless brother passed away.
When we found out his diagnosis, we went to a very dark place with the realization and weight
of knowing the inevitable would be arriving far sooner than it should. It evoked an enormous amount of fear in me. As his big brother I had a duty to look after and protect him, and being told you are absolutely powerless to help as your brother becomes very ill, very quickly, was hard to come to terms with and difficult to accept. But however difficult for me, it was nothing compared to what Mike dealt with daily. This would be devastating for anyone but for such an active adrenalin junkie like Mike, it was a particularly cruel hand to be dealt. The illness gripped him tight, and I knew that it wouldn’t let him go, but it didn’t pull him away from me without a fight. We linked arms and pulled back as hard as we could and faced it together right until the last moment. Together with his girlfriend, I spent the last 3 years caring for him, and while it destroyed me seeing him little by little lose the ability to do anything, he constantly blew my mind with his strength, spirit and determination to face this awful condition head on.
Mike always wanted to go to Queenstown, New Zealand, the
adventure capital of the world, where he could feast on all the
different crazy adrenalin sports it has to offer, but he never managed
to fulfill his dream. So he set me a challenge: to walk in his shoes
and do it for him. He’s drawn up a bucket list, a seriously bad-ass
bucket list and I’m going to tick it off by any means possible and face
my fears as he faced his. This is no ordinary bucket list though.
Mike wouldn’t simply want me to do a bungee jump, a 500ft canyon
swing or white water rafting… which is terrifying enough for me.
He’s enhanced the fear with a liberal dose of his humour.
Mike loved orchestrating any awkward embarrassing situations
that would make me look as big a buffoon as possible. There was
no greater joy to me than to see him laugh, and he laughed the
most when he could set me up for a fall! He compiled a list over
the last 2 years of 50 things he wants me to do. There are 49
left and I’ve absolutely no idea what they are.
I did the first of Mike’s 50 at his funeral service. His girlfriend handed me a note
that he wanted me to have which gave me an indication as to the style of the
remaining 49. In the walk to the pulpit to say a few words, he wanted me to trip over!
Of course, I did it and after the gasps and looks of pity and concern had eased off,
I held a sign up that said ‘Trip Over’, and explained that he was to blame! Typical Mike!
I’ll admit I’m a wuss… a big girl’s blouse. I squeal at the sight of a spider and
haven’t a thrill seeking bone in my body!
I prefer cups of tea and gardening and I certainly do all I can to avoid tricky situations
so this is the last thing in the world I would ever do if left to my own devices.
But I will do whatever he’s instructed, no matter what. So my lily-liver is taking a
backseat as I complete Mike’s insane list of thrill seeking tomfoolery.
I’m going to experience a part of his life that he loved so much while knowing that
he’d be splitting his sides at the compromised situations he’s put me in!
I’m doing this because I’ve learnt some very important lessons over the last few
years. I’ve seen my brother go from an incredibly active, healthy man in the prime
of his life, to someone whose body gave up on him, needing care 24hrs a day.
He taught me to grab life by the balls, never have any regrets, to enjoy every breath
and always look for the next smile. This has given me a rock solid resolve to do
anything he has put on that list; I would run down the street naked, tattoo a sailor
on my chest or shave my hair off, anything for that smile I know he’d have.
Unfortunately for me, he knew this and will have taken full advantage of the situation
and incorporated that into my challenges, as I would to him!
This is more than just a bloke on a jolly doing crazy dares. It is the strength of two
brothers’ bond built while daring to face his mortality together against a very real
ticking clock. The intensity of the emotion ahead is terrifying but there could be no
better way to push through the fear and into courage than with his memory and the
unbreakable connection of our love. My hope for this film is to ignite a passion for
life we all should have raging within us and to inspire people to take absolutely
nothing for granted. To fully appreciate the family and friends we hold dear and close,
and not wait until something terrible happens before realizing that.
This will be a journey of discovery and inspiration, about how
sweet and precious life can be in the very little time we live it.
Together with the bonkers crazy storm of adrenalin sports and
dares, there’ll be another rich layer to add to the fabric of our
journey - the peaceful calm of soaking up the beautiful, epic
landscapes of New Zealand.
I intend that through all of this, the documentary will also raise
the awareness of such a little known and unfortunately under
funded disease that devastates life in such a cruel and
indiscriminate way and to show them they are not alone and
definitely not forgotten.
Page 1 - 6
COPYRIGHT ROYD TOLKIEN 2015