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| MSA - regrettably alive (and not well) in South Africa |
There is a castle on a cloud
I like to go there in my sleep
Aren't any floors for me to sweep
Not in my castle on a cloud
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Others may not be so aware
But you and I both know of the journey you dragged me on
the battlefield of your war I became an ill-equipped part of.
Dear MSA
Others may not be so aware
We got to know you in stormy seas on a sinking dinghy;
Hovered too many times in deepest valleys of despair,
Squinted our eyes into the darkest of dark skies
Looking farther than the farthest of far
Always searching for the glimmer of that single lonely star
Despite your debilitating incarcerated demeanor
We conquered a few high mountain peaks to where hope stands taller than tall
And you couldn't stop us from watching the magnificent sunrise.
Dear MSA,
Others may not be so aware
and quite honestly, why should they even care?
Attempting to return here to this blog since you took her away have failed abominably
Time after time after each miserable time
The scars you left behind are jagged, revealing too many wounds
leaving memories deeply entombed
The temptation has been great to write just two words
Yes, only two - before pressing 'send'
It was simply
'The End'
Dear MSA
Others may not be so aware
We both also know
That there will be no end
For I've come to know
There's just too many hearts to mend
Your ruthless claim
To selfish fame
filling your victims with ignorance, anger, hate, fear, suffering and pain
and thát is that need to end.
(Copy to Sissi in Heaven)
The Les Miserables classic
Castle on a Cloud sung by 3-year-old Claire Ryann
There is a castle on a cloud
I like to go there in my sleep
Aren't any floors for me to sweep
Not in my castle on a cloud
There is a room that's full of toys
There are a hundred boys and girls
Nobody shouts or talks too loud
Not in my castle on a cloud
There is a lady all in white
Holds me and sings a lullaby
She's nice to see and she's soft to touch
She says, "Cosette, I love you very much"
I know a place where no one's lost
I know a place where no one cries
Crying at all is not allowed
Not in my castle on a cloud
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On a personal note, I've been rather at a loss since Sonja died, and have become more withdrawn than I'd like to admit. Social media can be deceiving and when you post one or two happy pictures, people think 'ag she's fine'. Grief and mourning is such a complex subject, one which is extremely personal. In my own experience, I have found that her death has revealed and triggered some other losses I have not yet allowed myself to mourn.
I'm deeply touched at this need of others wanting to interact with me and will continue to engage with MSA Patients and those affected by it. I've often referred to the good, the bad and the ugly of MSA - I consider this interaction as a really good one. :)
I'll quote just a few of the notes received from South African patients (or family).
"I'm rambling now because I'm so excited to make contact with you"
"Sorry let me rewind completely and say how sorry I am about losing your sissi last year and thank you for your brave fight against msa xxx"
"I've read your blog all day today as I get the opportunity... Thank you for all the hard work you guys put into it."
"I am feeling so much more calm since making contact with you and reading the blogs "
"Hi Karin how are you , she's not well but i need to ask you have you heard about Oxy treatment regards"
" she started falling a lot this is terrible i am so tired allready.
"She just started with the fits again ,this is now going on for 1 hour"
"The stress is so enormous - I'm constantly getting nose bleeds"
"I'm frightened. Thank you that you are listening
"Is it normal to cry so much".
" There are good days and bad days but as you know it's a case of being constantly aware of changes so that adjustments can be made to make life easier. Thank you for your time and concern"
"Thank you for the support we really appreciate it
""Deteriorating slowly but still able to cycle on a power assisted mountain bike and swim some lengths in a pool. Both are my answer to depression and feeling sorry for my self."
"Hope you find someone to guide you in compiling a book of Sonja's blog"
"a toss up between MSA and PSP. Diagnosis is such a long process. Slowly loosing walking , balancing ability"
"My greatest pleasure is swimming lengths in a pool. Sorry I am going on a bit but I don't have a " Karin " of my own"
"Dear Karin, My name is ...I found your name after a friend sent me a link to MSA. Thank you for all the information. I received confirmation today that I have MSA."
"All people are special. This THING has made me realise again the value of people. You know, many of my friends don't know how to handle IT, not because they don't care, they just don't know how. I try to make it easier for them by trying to remain positive."
"This thing is bringing me closer to people and if the purpose is for me to make a difference, then I am blessed".
"I'm fine - struggling a bit with my hands but there are people without hands"
"I would like to dedicate my art exhibition to you and Sonja. Sonja as MSA patient and you as a true friend".
"It's been ten years"
"I am in the middle of the Indian Ocean at the moment. I really appreciate your time spent keeping the MSA page alive, it really does help. Unfortunately my wife is not up to meeting you yet"
"It's actually really nice to have someone to talk to who understands."
"I wanted to ask if maybe you found any assistance within South Africa for treatment of the symptoms that are still to come? I work at a private hospital and only one of our Physicians have ever studied further into the condition, so its clear that reaching out to others who have suffered or are sufering is the best support that we can hope for. Thank you so much for reading my message and for all that you are doing to create awareness and eduction around MSA"
"I watched Sonja's page she seemed like a wonderful woman and I would like to say thank you to you and her for helping me deal with my dad's illness
I am so sorry for you loss, just know than you and her helped myself and my sister deal with something that we had no Idea about so thank you for that and sharing it with us, thinking of you and Sonja's family"
To conclude, thank you to all those that are still reading the blog. According to the statistics, the most popular posts on record are:
Neurologist appointment - written by Sonja van Rhyn
Dear Newly Diagnosed Patient - written by Sonja van Rhyn.
The Room of Multiple System Atrophy - written by Karin Holtzhausen
MSA - The Magic in the Little Things - written by Karin Holtzhausen
MSA - The Courage in the face of My Dolly's Fragility - written by Karin Holtzhausen
“Love goes very far beyond the physical person of the beloved. It finds its deepest meaning in his spiritual being, his inner self. Whether or not he is actually present, whether or not he is still alive at all, ceases somehow to be of importance.”
I know a place where no one's lost
I know a place where no one cries
Crying at all is not allowed
Not in my castle on a cloud
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(If this is your first visit to this Blog - welcome - please click here for a bit of background.
by Karin Holtzhausen