Friday, March 1, 2013

Multiple System Atrophy South Africa Awareness


Normally I blog about pretty places, pretty things and pretty people. There are so many blogs in the world, how to know whether your little voice in cyberspace actually makes a damn difference puzzles me.  Its a great feeling to hear that you posted something that intrigued / inspired / fascinated someone out in the big blue yonder.   
A while ago a young blogging friend messaged me to say that a blog-browser happened to come across her blog while looking at my blogpost about the time I gardened for Hospice.  The said blog-browser browsed further and saw that I mentioned my young blogging friend's blog and realized this was her neighbor of more than 30 years ago.  They were ecstatic to rediscover each other, especially because the blog-browser now lives in France, a long way from my hometown, Somerset West at the tip of Africa.  Blog-writing, blogging, blog-posting - whatever you want to call it - most of the time its just for the heck of it and finding a way to express my creativity in the cyber world.  

Today, however, its not about anything pretty - its about an awful illness called MSA (Multiple System Atrophy).  My friend for more than 52 years is in a wheelchair because of it.  A miserable, destroying, awful illness. 
(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.)

Anyway, I spend quite a bit of time with my friend Sonja and have come so close since her illness, that we now call each other Sissi. (an endearing term for sister - even though we are not real sisters). As MSA gradually took away her mobility and affected other abilities (which we all take for granted) I have become more conscious of my own abilities, taking less for granted.  One feels so helpless when you are around someone you love being robbed of life as you and I know it and there really is not much I can do.  There is no cure.  It's virtually unheard of.  I often smile / smirk / rant at the fact that she has to educate the doctors / nurses during a consultation.


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.

My message to CometoCapeTown and the response appear below. It fans my candle of hope. 

(**)
"Karin said,
March 1, 2013 @ 6:30 am
Fancy Sir Richard participating! Though I would of course be keeping an eye out for him, this year I’ll be rooting for a small group of cyclists sporting bright orange T-shirts – riding for MSA (Multiple System Atrophy). Multiple system atrophy (MSA) is a progressive neurological disorder that affects adult men and women - a terminal illness. It is caused by degeneration or atrophy of nerve cells in several (or multiple) areas of the brain which can result in problems with movement, balance and automatic functions of the body. My personal awareness has come about because of my 52 year friendship with my friend Sonja, who has become victim to this awful disease. A small group, a rare illness almost unheard of in South Africa. Yep, I’ll be rooting for the orange shirts. https://www.facebook.com/RideForMsa/info"

(*)
Rox said,
March 1, 2013 @ 7:20 am
Hi Karin,

Thank you for sharing this – after reading your comment and then the blog that is dedicated to MSA, I will be rooting for the orange team too.

I have only briefly heard about MSA, and I have to admit that it may have been in an episode of Grey’s Anatomy. It’s sad that there are still too many major illnesses that go right under the radar of our awareness here in SA. I am going to keep reading the blog, and do more of my own research too.

You and Sonja have a beautiful friendship, and your blog is a reflection of that… it really did move me to tears!

So once again, thank you for your comment. I shall head on over to the Facebook group, and will look out for the orange team on race day.

Rox "

So, to get back to my story of 2 friends discovering each other after 30 odd years through one of my blogarticles - I am posting this in faith that it will contribute and become part of the cure for MSA - one day.  Thanks for reading.

The only blog in South Africa is this one - MSAINSOUTHAFRICAWITHSONJA.BLOGSPOT.COM
The Facebook Page is - Facebook MSA in South Africa
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


 (If you are perhaps remotely touched by this, can I ask you to reblog, post in your facebook, retweet, email or print it out and share it with a friend who does not compute.)  





6 comments:

  1. Thank you Sissi! Your light shines bright and clear and your voice is heard by many more than you think. You are blessing in my life! Lots of love xx

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  2. Wow, Karin! This is very moving and at the same time, too terrible for words. I am so sorry about your friend. It is awful, when illness gets a very personal face as it affects one close to your heart. Your friendship and love for each other shines through. And I am sure that helps to ease Sonja's load that she has you in her corner. You will do well as part of the MSA Awareness team. Of that I am sure. With lots of love, Helene xxx

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    1. Dear Helene, Thank you for your kind words. I was directed to this old article I wrote and saw that I didn't respond. I should have. Thank you again.

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  3. Thanks Karin for this special informative piece. The more we know about MSA and related conditions, the more empathetic we can be and spread the message for others to understand. Love you both much. Big hugs Sonja!

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    Replies
    1. Thank you Marlene. It's comforting to know that this article is still being circulated and read.

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