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?