Saturday, August 30, 2014

ALS. Ice buckets. Challenges. Iceland.

Stacy died almost nineteen months ago, she lived with Motor Neuron Disease for three and a half years. Some moments from her life and struggle are cast in light relief in the posts on this blog. It was incredible and horror filled. 

She lives now by bouncing through the minds and splashing onto the hearts of those who knew and loved her, and those who have heard her story. She continues to have an influence now. 

Certainly in the recent weeks of furious global fund raising, awareness fostering and ice bucketing Stacy's lasting influence has been felt by many. Her name has been invoked by those touched by her journey who are soon to be touched by ice, and perhaps her story has been shared among the many stories of pain and courage drifting around the community. 

I feel a sense of responsibility on Stacy's behalf to make comment, and also have my own ideas and perspective on the conversation surrounding this evocative round of fund dumping and ice raising. Thanks for the challenges, and emailed questions.

My understanding is that you will have experiences in life, and your job is to embrace them with your full range of human receptors. That to me is the main point, face the experiences that are presented to you, don't turn away, perceive what you can. Truly experience. 

Some of these may be horrible, stand and experience. At times you may feel invincible, stay and experience. Life may be stimulating or exhausting, frightening or comforting, invigorating or disconcerting. Feel it, recognise it, experience it. That I think might be a significant part of your life. 

Perhaps the challenge then is to find a way to make value out of what you have perceived. You are of course the only person in the history of the world to have your set of experiences, no one else is as informed as you about your life. If you have been paying attention there might be something valuable you have learned. 

There is a chance this only makes sense for me, however it feels like it might resonate. Be brave and stay with the events, challenges, joys and suffering of your life. Be there and feel it with the spectacular ability you have, then see if there is value. If you can do that then I think you might be living a valuable life. 

So now I say, donate money or don't, encourage others to or don't, film your video and enjoy others or don't. Make sure whatever your experience is you are staying with it and feeling.  



  1. I love your words Mike. It is so easy these days to distract yourself from your unpleasant thoughts by drowning in technology and social media. Unfortunately it comes back to bite you in the butt! Feeling it there and then helps you deal with it. Easier said than done though. I hope you are keeping well.
    Kell and Shane (from Uni).

  2. Hmmmmmm needs more ice.

    Nice work Neild :)

  3. Your journey has given you a maturity and a sensitivity beyond your years, what a blessing that is. Stacy will always be in my heart. Thanks Mike for sharing, as always.
    love Maggie