Monday, 1 May 2017

ALS Awareness Month

If you are on Facebook, or engaged in US social media in any way, it is unlikely you will get by the next few weeks without being told the May is ALS Awareness Month in the USA. You will likely see Facebook posts and posters, frames, memes, heart rending or compassion building news reports, special bulletins, whatever. Or, you may miss it all. It may drift by you in the cosmic flood of online and direct media, buried amongst the millions of other Awareness Months or special Days.

Friday is No Pants Day. Will that garner more attention that ALS Awareness Month? I suspect so. The idea of seeing pretty people in their underwear is sure to peak prurient interest. A barely functional human being, kept alive by tubes and wires, supported by care workers and family for all of his or her waking day; there's nothing attractive about this. It's just not sexy.

For me, and for so many around me, every day of every month is ALS Awareness. I decline the opportunity to fuse my message into a single month of commentary. There are no days, no times, better than this day, this time, to tell someone you know about someone else you know with ALS, what it has done to his or her life, how it is an "orphaned" disease, how researchers know so little because we spend so little on research.

You may be surprised at the level of disinterest or lack of knowledge you encounter. After all, ALS is not common enough to attract daily attention. It sits there with a hundred other human ailments, disabilities, syndromes, diseases. The emotional space for learning and caring about something so rare as ALS is limited, until it touches you personally. Why would you care about ALS when you have almost certainly been touched by cancer, either in person or in a person near to you? Why would respond to ALS having seen the pathos of childhood diabetes, leukaemia, liver disease, and on, and on?

It's a crowded compassion marketplace out there. The world has a great many ways to take the lives of we simple creatures. We will never prevent death. We will never eliminate disease. Our task, as cruel as it may seem, is to invest as best we can to ensure quality of life until life ends. We need a cure for so many things. ALS is just one of them.

It's good to see ALS Awareness Month in the US. Perhaps it will do more to make people aware of how this disease destroys lives, families. My wish that it is more than a simple meme on Facebook or a tweet on Twitter. The ALS story most be told daily, every day. It must be proclaimed on the mountain tops, given to every town crier, screamed to the gathered masses.

Everyone knows, and fears, cancer. Most people don't know, and don't fear, ALS. It's rare. It could never happen to me, right? Then, it does. Then you become aware, in that moment, your ALS awareness moment. Then you will want treatment. Then you will want a cure. Until then, I will continue to tell you what it is like to live with ALS. Share this blog, this message, this awareness with everyone. First comes awareness, then research, then treatment, then a cure. We are on step one.

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