Sunday, March 17, 2013

Graphic depiction of ALS...

As most of you know, I like to read.  I have always loved to read a good book but a few years ago I discovered the enjoyment of reading blogs.  Like books, there are good ones, bad ones, some that are outdated and some that are even better than the cover suggests. 

Since being diagnosed with ALS, I have gone back and forth about reading blogs relating to the disease.  As the author of one such blog, I can tell you that not all the posts are happy, light-hearted, funny, or inspiring.  Not here or out there in the web-o-sphere.  Personally, I just try to keep it honest with a hint of my "life is good" philosophy whenever possible.  Of course, I'd like to say that not every day in my life is about having ALS, but that is less and less true.  That doesn't mean every day is bad, certainly not, but ALS does slow me down at every turn and is a part of just about every decision I make, in one way or another.

Recently, I came across “Sarah’s Story”, a public service announcement about ALS (called Motor Neuron Disease or MND outside the US) sponsored by the UK-based MND Association. 

Sarah Ezekiel was diagnosed with ALS/MND at 37 years old.  She was married, had one child and was 7-months pregnant with her second.  "Sarah's Story" is a graphic video showing what ALS/MND feels like as it robs a person of their voice, their strength, their muscle control, their breath, their dignity.  It was determined to be "too shocking" for the general public by Clearcast, a watchdog organization, and was banned from British television.  This was in 2009 and Sarah was 43 years old.

On this blog, I share MY feelings and experiences about living with ALS but this video cuts to the heart of it and there is no hiding from what you see.  I agree that it is shocking, and its scary, and the first time I saw it I thought it could double as a horror movie trailer, but it is real and I not only have felt some of it myself, I have seen it in others living with ALS. 

I am posting the video and asking you to watch, but only if you feel strong enough.  If you don't feel up to it, there is no judgement from me, the choice is yours.  I would like to hear your comments and thoughts if you are willing to share them, so please post them here.  Is this what you thought ALS was like?  Or did it scare the bejesus out of you?  Or both? 


  1. that's quite a powerful's to bad they took it off the air...something like that would never be shown here...i think that we americans are very happy being in our squishy, padded world, safe from the harsh realities of life, sucking on a light beer...and when we see something like this video it makes us uncomfortable, so we don't want to see or deal with the reality of als/mnd...
    none of us know what you're going through...we never will...
    as much as i want to be able to fix 'it' for you...i can't...
    all i can say to you and your boys is, whatever i can do, don't hesitate to ask...

    1. Thank you, as always!

      I have to say that even though I understand how ALS works and I've seen how it progresses in others, I don't know that even I really know what is ahead for me. It is different for everyone and I want to believe I will not become a shell of can I lose those abilities that allow me to give a hug, to write, eat, drink, breathe? But then again, my ability to talk is already out the window so the reality is there...and yet, not totally.

      With that said, how can I expect someone on the outside looking in to really understand what I'm going through? I guess that is where I call on the power of empathy...try to imagine what it feels like to lose pieces of yourself, your ability to function on your own until total surrender is the only option left (I think this is what the video shows very well).

      This is why I ask everyone to please help by spreading ALS awareness and supporting ALS research, assistive care, clinical trials, and let's find a cure already!

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