Ian Davis is a brave man. A sufferer of Motor Neuron Disease, he is slowly becoming trapped in his own body as it becomes paralysed around him. Losing his ability to do the things most of us take for granted is one thing, bet not being able to move, speak, swallow or breath on his own is a terrifying prospect for anyone, especially as Ian intellect will not be effected.
However, like a true fighter, Ian has decided to make the most of every moment. “There is no effective treatment and I was told in September of last year that I had 2 to 3 years to live,” he says. “I felt helpless for a long time but I now want to take some sense of control. I’ve decided to live with MND rather than die from it.”
Ian wrote to Beer & Brewer out of his love of beer – something we understand well – and because he has a special project in the works
MND is mostly effecting his legs – though he has signs of it in his arms and his breathing muscles as his nerves continue to die – and as he will need to leave work soon he decided to begin homebrewing, which, other than being a great hobby, is something he will be able to continue experimenting with even when in a wheelchair.
And this is where it gets interesting. Ian has teamed up with Cavalier (www.cavalierbeer.com.au) a new microbrewery on the Melbourne scene. They have decided to help him develop a beer from scratch to raise awareness of MND as well as funds for the MND and Me Association (www.mndandme.com.au) – run by Scott Sullivan, an MND sufferer who Ian describes as an absolute hero.
“My plan is to try and develop an Ale – an ALS Ale,” he says (ALS being another name for MND). “I havn’t decided on a definite name yet, but was thinking of the calling it the “Sisyphus AmberAle” or Pale Ale etc.”
Sisyphus is a reference to Albert Camus’ essay on Sisyphus, which Ian read in high school. The tale of the ancient Greek king condemned to push a boulder up a hill in Hades for eternity, only to have it roll back to the bottom every time he got to the top in recompense for his crimes during life, was particularly resonant for Ian.
“I think a lot of what Camus talks about is relevant to me, and probably all people with MND,” he says. “For me, it represents what us patients go through continually. This disease continually takes something away from us. For me initially it gave me a foot drop. I adapted and got an ankle/foot orthosis allowing me to walk again – I pushed my boulder up the hill – and just as I thought things were stable and I was doing okay my knee and hip muscles became weaker and walking became difficult again – my rock rolled back down. I now use a cane and a knee brace that has made walking safe again (for the time being anyway) so I am back at the top of the hill.”
Unfortunately as Ian says, his rock is delicately balanced and could drop again at any minute, although, like a true hero, he is trying to accept his situation and push on regardless. As Camus says “The struggle itself towards the heights is enough to fill a man’s heart.”
It is perhaps ironic that Ian is himself a doctor by trade, though soon he will no longer be able to practice. Instead, his dream is to build a his own business and microbrewery which will continue to operate and raise awareness of the disease as well as funds long after Ian has left this life.
“No cure for this disease will come in time for me,” he says. “But if research and awareness are pushed forward, maybe I can help those who will be diagnosed with this disease in the future.”
If you’re interested in supporting Ian and his quest for a MND brew send an email to firstname.lastname@example.org and we will pass it on for you.
For those interested in reading more about MND see the links below.
MND Association of Australia: www.mndaust.asn.au
MND Association of New Zealand: www.mnda.org.nz
MND and Me: www.mndandme.com.au