Let’s get one thing straight. I am not thankful for Motor Neurone Disease.
It’s a hideous disease. No, I’m not thankful for it. In fact, I despise it.
People with Motor Neurone Disease (MND) progressively lose the use of their limbs and ability to speak, swallow and breathe, whilst their mind and senses remain intact (some say it resembles being buried alive). The cause is unknown. There is no cure.*
I meet and watch as strong healthy men, in a matter of months, can no longer move their legs, their arms, their tongue to speak or their jaw to eat. I see as they become prisoners in their body, all the while fully aware of what is happening to them.
I’ve buried too many people to this disease. I’ve sat with too many grieving families losing their loved ones far too young. Just last month, I met a child with MND. It makes me angry.
Personally, there have certainly been moments living with this disease, for four years now, when I grieve what I can no longer do, but I try to keep them to moments and short ones at that, while focusing in on what I do have and can do.
I have become more aware of the small things I can be thankful for.
I’m not thankful for my MND but I try to be thankful in the midst of it. Maybe you have heard me say that before, but you need to understand that it’s not a passive, absent thankfulness. It’s very active. It’s very intentional.
I wonder in this fast-paced and full life, if our thankfulness, as good as it is, doesn’t turn into something more?
I wonder if we sat with our thankfulness for just a few more moments, if it would cause us to become not only thankful, but also thoughtful, and not just thoughtful, but active?
I have noticed that each time I am thankful for being able to walk, I am drawn to pray for those, who for the first time will be placed in a wheelchair and never be able to walk unassisted again. But what if there was more I could do?
Each time I am thankful that I still get to taste my food, it triggers thoughts of those who will be getting a feeding tube and therefore never taste food again. But what if there was more that could be done?
MND is no respecter of persons; it can strike anyone; and each day in Australia two people die from MND. Average life expectancy is 2.5 years. For every person diagnosed with MND, it is estimated that a further 14 members of their family and their friends will live with the effect of MND forever.*
I, by no means, wish to diminish the power of thankfulness in our lives.
Research shows that daily discussion of gratitude results in higher reported levels of alertness, enthusiasm, determination, attentiveness, energy, and sleep duration and quality.
Grateful people also report lower levels of depression and stress, and although I do not think we should deny or ignore the negative aspects of life, there is a significant importance of gratitude.
When we are unaware of what we have, we are also unaware of what others don’t have. It is the breeding ground for self-focus. Thankfulness and gratitude develop thoughtfulness and compassion for others as we realise what we have.
We may live in a thankless world, but it is important that we increase our compassion for the less fortunate.
I do wish to encourage us all today, that there is more we can do!
You see, I want to use every breath I have, by every means I can to deal a fatal blow to this disease. I want to be an ambassador that there is always hope. Always.
To the disease I despise, your greatest days are behind you and an army of us are coming at you with all we can muster.
So that, one day, whether in our lifetime or not, a doctor, can sit across from a patient, like I did that fateful day, and hear the horrible news that they have Motor Neurone Disease but then be told, “THERE IS SOMETHING WE CAN DO!”
In hope for that day, and in action towards it, I have partnered with Cure for MND and the Big Freeze to help host a huge awareness and fundraising campaign locally in Newcastle. If you are keen to join me, you can follow the links below.
Appreciate your continued support as you help us fight the beast,
For tickets to the Big Freeze Ball (selling fast) visit: https://www.stickytickets.com.au/50467/big_freeze_newcastle_ball_2017.aspx
Join me for a night filled with music, laughter, and community spirit as we raise awareness for Motor Neurone Disease and vital funds for Research into a cure. Saturday June 17, will be a great evening in the Starlight Ball Room, at Wests New Lambton. All Proceeds from the night go directly into funding vital research into a cure through the Cure for MND Foundation.
For more information visit www.newcastlefreeze.com
*Source: Deloitte Access Economics report Economic Analysis of MND in Australia: http://m.mndaust.asn.au/Get-informed/What-is-MND/Facts-and-figures