Fridays with Phil

I had the privilege of being part of the MND Massive Open Online Course (MOOC). Anyone can take this course if you want to know more about MND/ALS. Here is the link for the course, which is free until the end of June. https://island.mooc.utas.edu.au/course/20279

Transcript:

You’re not alone. You know there’s an army out here and a family out here that are here to help. When you get diagnosed with a terminal illness. You have to reeducate yourself to be the one who is willing to receive help, which is very difficult. 

One of the things that I would like to get across to the MND community is, we are human beings, not human doings. And your sense of self-worth and significance is not created by what you can do; it’s simply by being who you are. And when we lose the ability to do things around the house, that doesn’t mean that we are less significant or less important or less valued than the people who can still do things around our house. Your value is not in the things you do. Your value is in that you are a human being. 

You know you have intrinsic value, and your presence alone, even if you can’t move, even if you can’t speak, even if you can’t hug your wife, even if you can’t hug your grandkids. Your value is your presence. You’re there, and that’s what people who love you will value. You know that they won’t care that you can’t feed yourself or you can’t feed them.

To those with motor neurone disease, please don’t see a body getting weaker of your sense of self-worth and significance to those that you love. You know you are more than your body: your body, mind, soul, and spirit. 

Also, keep the hope as well. You know there are a lot of things happening that weren’t happening 10 years ago that are happening now, so please keep hopeful. Continue to hope. Who knows? Tomorrow might be the day someone goes, “ Eureka! We found something!” We just don’t know, and so keep hope alive.