Multiple System Atrophy is a neurodegenerative disorder that affects many of the autonomic body systems that people take for granted. The symptoms can occur in any combination, from loss of balance and coordination, fainting and dizziness due to severely low blood pressure, bladder and bowel issues, speech and swallowing difficulties, sleep disturbances, breathing problems, and rigidity and tremors similar to Parkinson’s disease or ALS.)
This morning, the first of March, is the beginning of MSA Awareness Month (internationally) - and a feeling of despair came and hung around my shoulders and I felt so darn useless in my piss-willy attempts to help spread awareness sometimes. In South Africa, let's face it, with the highlight on issues like the complexities of our political situation, increasing crime, our cultural differences, the poor economic situation, the lack of medical skills and funding, shortcomings in education, etc - creating awareness for any illness does not even go blip on the radar screen. So many mysterious illnesses deserve being heard, being explored, being researched - many so deserving of stepping up to the platform of awareness. With this in mind - MSA is but a sand-grain in the bigger picture of South Africa.
So, with the above feeling of despair in mind, let me take you to what my Facebook status was this morning - the rest will onfold.
"Twitting tweets help? I am a novice at twitter and it confuses the heck out of me. Its the 1st of March - and international Multiple System Atrophy (MSA) awareness month. Some people have walked the camino, others are cycling the Argus, some talk on the radio, some make YouTube clips and quite honestly, I am sometimes intimidated by all this! The voices of the international MSA supporters / sufferers are so intense, their pages flap in my face and their tweets and posts are fast and furious. I made a blog for Sonja - big deal. I taught her about Facebook - big deal. I made an MSA page - big deal. All this sometimes feels like bugger nothing! (Yeah - having a real pity party here I know). Does my voice really matter? Now and then, when I feel so helpless when I visit my friend Sonja and what bloody MSA has robbed her of, I also succumb to feelings of despair. So, I'm sorry that I don't do all those fantastic things that every one else does - but I'll continue to wave my small flag, I'll continue to take Sonja out as long as I can, I'll continue to blurb my two cents worth whenever and wherever I'm bold enough to.
To get back to twittering tweets - there's SO MUCH STUFF and it confuses me - and its fast, feels like an overpopulated budgie cage and for once I feel totally out of my depth.
Having said that, this morning I tweeted (**see further down) on an article about the Argus Cycle Tour that was posted by somebody named Rox on ComeToCapeTown. Dear Rox commented on it shortly thereafter (presumably she is a contributor to the page). Somehow, amidst the twittering cacophony I saw her tweet about it on her Twitter page:
"The first comment on my Argus Cycle Tour post inspired and moved me this morning" . (*See further down).
This tiny tweet of hers led to the link of her post which leads to links to our MSA blog; our Facebook pages etc etc. So, although my voice is soft, my physical steps insignificant - my intentions and hopes fly high with the dreams of every MSA sufferer and I'll continue to tweet into the seemingly abyss of twittering twits now and then, intrude on Facebook pages and yes, even tweet Sir Richard Branson.
MSA in South Africa, your voice may be soft but I hope that one day we may be the soprano of a great concerto - and that the winds of the earth will know us by name.
Sonja and our Friendship come a long way - friendship
International Multiple System Atrophy Awareness organization has thought it fit to appoint me as part of their awareness team - one I feel so ill equipped for - MSA ORG
An MSA patient's daughter has put together a team to participate in the Argus Cycle Race