MSA Glimpses and Highlights of 2018

Sonja and Karin - our outings were the best - even the simplest ones

As 2018 draws to a close
I linger on untold memories of those
Who are no longer here and who dwell in that illusive space
That space that separates the all-consuming present hère
from the mysterious invisible thére.

Sometimes I catch a glimpse of a loving smile
Sometimes a familiar smell wafts around me for a while
Now and then I recognise a laugh in the summer breeze
See a silhouette on a sunbeam amongst the trees.

As 2018 draws to a close
I linger also on the best memories of this year
In Sweden lives the cutest little girl
And a part of me lives in a cheeky red curl.

* In Sweden lives the cutest little girl, and a part of me lives in a cheeky red curl *

To have three great kids is quite bloomin' marvellous,
As teenagers there were times when they just brought out the absolute gremlin in me
And now? I'm just a proud Mom and they often manage to bring out the absolute soppy in me.


My journey with my friend Sonja, (RIPmy Sissi) has left me vulnerable - at times very close to broken
During her illness with MSA, a lót was shared and a lot was said
Yet, a lot still needs to digest, a lót has been placed on a shelf, a lot remains unsaid
Possibly for selfish selfpreservation,
For now, my thoughts and words will stay on a vacation.

Yet, as MSA is never far from my thoughts
Connecting and meeting other patients and their partners was a privilege this year brought
Thank you to each and everyone of you
For reaching out to others despite what you are going through
It helps knowing you're not the only one
You matter, your purpose is still not done
I continue to share your dream to find a cure for MSA too.

It's a privilege to stay in touch with MSA patients / families in South Africa - and really special when I've had the opportunity to meet some of them.  The MSA Awareness Shoe visited me for a while and was taken around to the few of them.  Although it is really a pleasure and a privilege to have done so - at times it can be rather difficult for me to keep a brave face, knowing of the challenges they might also have to face or already endured.  When the families tell me how much a visit or a letter had meant - I just know that it was worth every second, every chosen letter and every single kilometer.

A recent journey to Nelson Mandela Bay (Port Elizabeth) was the furthest trip I've made (706 km) to meet a patient - this time with my husband and willing driver.  How uncanny that one of the patients, Neill Deane, is an old friend who we have lost touch with over the years.  Rather sad that we had to reconnect under such circumstances, but we were so happy to see both him and Karel again, and to meet the other two MSA families.  This was the first time that these families also met each other, and despite the grim subject - it was a really good gathering. Liz has initiated a whatsapp group to which they have added me, and it's so touching to see how they support one another.

Here are just a few images of the year's meetings with MSA patients / families.  (I have many photos of the MSA shoe's journey while it was with me and at some point I'll document it into a reasonable article.)

Meeting MSA friends in Port Elizabeth (Nelson Mandela Bay) - Eastern Cape
fltr Lorraine Lewis (carer to husband Alan who has MSA - he couldn't attend unfortunately)
Liz Horne (has MSA - with husband / carer Emlyn behind her)
and Neill Deane (has MSA) with carer / partner behind him

I have  met Lionel McDonald on a number of occasions.  His wife Reinette died a few weeks prior to this photo.  Reinette was also the first MSA patient that Sonja and I met a few years ago.
  Lionel and daughter Linette supported and attended our annual MSA walks on 3 October
Lionel is pictured here with the MSA Awareness Shoe. Taken in Strand - Western Cape

Peet Keyser (MSA patient) - Hermanus, Western Cape
I've met Peet and his wife and carer Anita now on two occasions.
Here Peet is holding the MSA Awareness shoe

Geraldine Ellwood has MSA and lives in Sir Lowry's Pass with husband Max who has Parkinsons. 

On 3 October a few friends gathered for the annual MSA Walk in the Strand.  Here Karin is pictured with
two very special ladies - Reinette McDonald and Liebet Jooste.
Both girls lost their mums to MSA.  This was the first time they met.

The MSA Shoe and Karin visited Liebet Jooste in Betty's Bay.  The two of us
went to her mom's favorite beach for a bit of reflection and fresh air.

Johnny (Sonja van Rhyn's husband) sold the family home and has moved into a
smaller place.  Their two sons came to help their Dad with the arduous task of
packing up house and memories.  We celebrated new beginnings with a BBQ
at our house and a picture with the shoe.  flr Chris, Loubser and Johnny

Jacqui Deane came for a quick visit when she heard I was going to PE to see
her brother Neill, bringing a few gifts to take along.  

I captured this image at 6.41 pm a little while ago - as the sun was setting.
Protea Cyneroides is the national flower of South Africa - also known as the King Protea
* Courage *
I dedicate this image to those facing the daily challenges of MSA -  I wish you courage for every day

May you have a happy 2019. May the bright moments outshine the dark ones. May each kiss linger and each hug last just that little bit longer. Have more ice cream, and if you can, add a dash of whiskey.

With love
Karin

MSA - Regrettably Alive (and not well) in South Africa

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

Dear MSA
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

Although I've been absent from this Blog in writing, I am still on a few MSA platforms, the Facebook MSA South Africa page and a few other relevant places.  It is with mixed feelings that I can report that a few more South African MSA Patients and / or caring family members have been in touch with me.  When I hear of the difficulties and challenges that they face on a daily, sometimes hourly basis, I am reminded of the frustration and agony (physically and mentally) that are endured.

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.” 

― Viktor E. Frankl, Man's Search for Meaning

NEXT :  The MSA Shoe alias Tim's Shoe and its visits to South Africa.  

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

 (If this is your first visit to this Blog - welcome - please click here for a bit of background.


by Karin Holtzhausen

MSA IN SOUTH AFRICA - RIP MY DARLING SISSI

Dear Sissi Sonja

In the early hours of 14 March 2017

You were released into the Heavenly Realm

Where you will forever dance and be free

Rest in Peace

I will miss you

You will be gone

but you will forever dwell in my heart

In the morning, evening and noon

From north to south

east to west

and a few times around the moon

Trough all the seasons

summer, winter spring and fall

you will be there

through them all.

Love,

Your Sissi.

x

Sissi, Tell Me, Where Is It That You Go?

Should this be your first visit to our blog - please head over here for a brief summary.

Dear Sissi Sonja,


https://youtu.be/al0MGqXVZIY

'Oh, hello Dolly, well, hello Dolly
It's so nice to have you back where you belong
You're lookin' swell, Dolly, I can tell, Dolly
You're still glowin', you're still crowin', you're still goin' strong'

You twitch your little twitch when you hear my voice
And you mutter your muttering little mutter
You open your eyes a little
I crank up the volume when I holler
'you're looking swell Dolly, I can tell Dolly'
 swinging my arms wide
when I do a really inelegant twirl
for my mostly sleeping beauty girl.

For a moment I know that you know that I am there
You wait for my smudgy red kisses - I swear
I tell you I missed you so and love you
Your eyes tell me you do too
For a little while we briefly connect
Sometimes for a minute
Sometimes maybe five
before you drift off again
into that mysterious space.

I miss you
         I miss you
                 I miss you so
although you are still  here
You are not
 my Sissi, my dearest dear
Tell  me, where is it that you go
when you keep drifting to that distant place.

There is still so much I want to say
Each and every single day.

Don't you think its bloody marvelous
that friends bring you a cooked meal - every day?
I think its simply fabulous.
Do you like the curtains we put up for you?
And all the pictures on your walls where you spend your days?
Did you see the Impatience flowering near the door?

I've become a Farmor - to the sweetest liten flicka
You stared so long at that darling little picture
And grinned a muttering grin
at my gaudy bright pink earrings.

My Sissi - my dearest dear
If only you could tell me - let me hear
There must be something
something else
that I can still do?

I love you,
Sissi Karin.

Dat ik je mis - Maaike Ouboter

MSA - FLUFF THIS PRIMPING BLOG AND PLEASE LET ME HOLLER

New Profile on the Facebook MSA Page

With a record of almost 10 000 visitors in the past month  - I reckoned that it was time to fluff and primp up the Blog as well as our Facebook Page  as a thank you to everyone who has paid us a visit.  It's taken days to tweak and figure how to make everything fit well into the new fluffed up design but it's been quite a lot of fun.  I hope you like it. :)

A side column was added to the left as well as various images.  Each picture takes you to a link when you click on it.  Most of the videos on this blog,as well as one of South Africa are also included in the left side bar 

If this is your first visit to MSA in South Africa with Sonja - please head over here for a brief summary.

Multiple System Atrophy is a conniving and devious illness with curve balls when you least expect it. The amount of visitors here is an indication of how many people are out there grasping for something - something to try make sense of its wicked ways.  

We've befriended (especially Sonja when she was stronger) a number of patients and their families over the years - some of them since left us.  Its heartwarming to see patients and families draw strength from each other and encouraging one another.  Perhaps this is one of the reasons that people visit here - and hopefully find some comfort in reading Sonja's journey with Multiple System Atrophy. I hope so.  It has been and still is the most extraordinary journey.    

There are a multitude of factual platforms for MSA - each one dedicated to their cause. Their relentless research is observed hawk-eyed - in the hope of the magical cure.  We share the research and their findings on our Facebook Page and have built quite a  number of informative links under the heading What is MSA

In South Africa Multiple System Atrophy is still a bit of an alien and hardly heard of.  If you are a newly diagnosed patient, please read this article written by Sonja in 2013   Looking back there is such profound advice with amazing insight.  I quote an extract:

"Being a fiercely independent person before, accepting the help from others was very difficult initially.  I have since learnt the valuable lesson that in accepting help you give a gift to the giver.  Don’t underestimate the value this can add to the lives of others, and the new depth in friendships/relationships this can lead to.  In turn, reaching out to fellow patients in their darkest hours has added value to my life"

There has been such a touching response to my 'letters' that I write to Sonja on Facebook, that I will post the latest one here.  Thank you to all of you who have left encouraging messages  I've read them all to Sonja.

.

Hej Sissi Sonja

It's been a few days since my last visit

And I know;

        that you know; 

 that I've written another blogpost again.
(2016 The Year MSA came like a Thief in the Night)

 And I know,
that you know,

 that I know,

 that you're waiting for me 
to come read it to you

Because lately, 
you cannot read it yourself anymore

the words swim all over the screen before they simply just 
disappear;
unseen
.

So 
I'll glue on my armor of inner strength

fluff up my uncontrolled hair

Put on some red red lipstick

And soon I'll be there.

I'll be all cheerful 

And genuinely happy to see you 
I'll start singing Hallo Dolly as always
the moment I enter the hallway.

But just this once
let me tell you,

there are some moments these days

That I feel a bit like 
hollering and screaming.

"And I scream from the top of my lungs
What's going on?
And I say, hey yeah yeah, hey yeah yeah
I said hey, what's going on"

"Twenty-five years and my life is still
Trying to get that great big hill of hope
For a destination
I realized quickly when I knew I should
That the world was made up of this brotherhood of man
For whatever that means
And so I cry sometimes
When I'm lying in bed Just to get it all out
What's in my head
And I, I am feeling a little peculiar
And so I wake in the morning
And I step outside
And I take a deep breath and I get real high
And I scream from the top of my lungs
What's going on?
And I say, hey yeah yeah, hey yeah yeah
I said hey, what's going on?
And I say, hey yeah yeah, hey yeah yeah
I said hey, what's going on?
oh, oh oh
oh, oh oh
And I try, oh my god do I try
I try all the time, in this institution
And I pray, oh my god do I pray
I pray every single day
For…"

Well I went to visit my Sissi and I read her the latest blog (the one just before this one) and then I read her what I wrote here above - on Facebook.  Then in conclusion I wrote the piece below:

 "Its a stunning song especially through earphones. Well I've just got back from another longish visit and I read her the blog and told her how many people had read from all over the world. And then I read her what I wrote here and played the song as loud as my little Samsung's speakers would allow and squeezed her hands as I yelled along ... yeah yeah yeah... I said hey, what's going on?"

Thanks for visiting -may I encourage you to leave us a comment before leaving.

ps by sharing this blog you will become part of creating awareness for MSA and play a roll in sharing our dream - to find a cure for Multiple System Atrophy.

Written by Karin Holtzhausen

MSA Day 2016 - COURAGE IN THE FACE OF MY DOLLY'S FRAGILITY

Should this be the first time you visit this blog - go to this link for a brief background.

(The words / phrases in italics are from a song by Angelina Jordan - What a Difference a Day Makes.  The song will be posted at the bottom of this blog).

What a difference a day makes

Twenty-four little hours

Brought the sun and the flowers
Where there used to be rain

Due to various reasons, there was no MSA Walk by us this year. Apart from Sonja's condition, Johnny has also been ill the last couple of weeks. Their children are concerned and stressed as both their parents are not well and were supportive of this decision. The family situation has been fragile and it would have been unfair to expose them to any additional stress. 

It was decided to have a small get together to show support for Sonja and Johnny and a few close friends popped in for a brief and intimate visit. The many kind messages of love and support towards Sonja and Johnny are appreciated.  

Although the gathering was small compared to other years, The Room lived up to its expectations and was filled with its usual Little Magic.   The few friends sat in The Room - all comfortable with each other, having snacks and tea; chatting about little things and simple things - each one sensitive and loving towards the family.  Later on we lit candles and thought of all MSA patients and their families.  Silently we also reflected on the affects that Multiple System Atrophy has on the loved ones of patients.  

Not planning and rushing around to organize our usual walk at Strand Beach, although not without its fare share of stress, left a feeling of guilt as well as a feeling of relief - if that makes any sense.  It was always this mad cocktail of stress, including elements of anticipation, excitement, fun, satisfaction and complete exhaustion.  With guilt and disappointment set aside - I am happy to say that this day, was a really really good day.

It was a simple morning of friendship love and fellowship - yet it was no simple morning.  

It was twenty four little hours.  It brought the sun and the flowers. It was just another day - yet was no ordinary day. It was rather a perfect day.

  

 My yesterday was blue, dear

Today I'm a part of you, dear

My lonely nights are through, dear

Since you said you were mine

It's heaven when you find romance on your menu

What a difference a day made

And the difference is you

PS - If you've followed this blog - you will know that Sonja and I call each other Sissi.  We sing Hallo Dolly to each other when I visit her.  Sonja specifically requested for this clip to be shared in this blog.  Yes, it shows her fragility.  But most important - it shows a lady of courage and substance. Your dedication to MSA Awareness is appreciated and recognized by more people than we probably realize and your light will shine forever.

I love you Sissi. 

Thank you to Laurette for photographs and video.

Written by Karin Holtzhausen

MSA - The Magic in the Little Things

When is all  said that could have been said?
I still wonder
What else is there left for me to say
That could still have profound meaning.

When is all done that could have been done
I still wonder
What else is there left for me to do
That could possibly have any meaning whatsoever to you

And so I've come to realize
All that is left now
is just the little things
So little that it would bear no significance to another
whose life has not become so small
yet so devastatingly all-consuming.

I take great delight when I know
you hear me coming down the passage
And we start singing Hallo Dolly to each other
before I come around the corner
and I see your eyes light up.
Your leg does that little shake
as you take your deepest shallow breath
to belt out in your loudest shlurry husky whisper
'YOU'RE LOOKING SWELL DOLLY'
and me
'YOU CAN TELL DOLLY'
YOU'RE STILL GOING,
YOU'RE STILL GO -HING STRONG'.

You've given up when I've left red lipstick kisses on your forehead
and surrender to a shriek when I give you farty kisses in your neck when I leave
You tell me you're still in charge and now have the rank of Commandant
I tell you sorry doll - I got promoted too - and Colonel calls the shots.

I have some wine in a lovely glass
you a whisky in your dedicated blue sip cup with a spout
I take sips of wine and hold the sip cup to your mouth
I say cheers Sissi
and you say cheers Sissi - dis 'n lekker dop (this is a lovely drink).

That's the sort of way things are most of the time now.  Love in the little things.  However, now and then there's that something bigger than the usual little things.  Like earlier this week,

Monday turned out to be rather a special one and I know Sonja would have loved to have written about it herself.  But, if you've been following the blog, you know that she now only has very limited movement with her one hand and typing just about impossible.  She asked me to come over as two friends were coming to give her a recital - with a clarinet and piano.  I will relate the story in a similar format as to what I wrote it on her facebook wall - which was in Afrikaans.

"Dear Sissi,

Today was one of those extraordinary and rare days, wasn't it?  When I received your email the other day (IN EXTRA LARGE PRINT - SO YOU CAN SEE IT  BETTER) - and asked me join you because Lara and Morne will be coming to do a music recital and will I please take a video clip - I said yes of course.  With just one word - OK - so that you could read it easy.  The people that love you deserve to hear about this special day, and I know how you would have loved to have been telling them yourself - but now you can't any more. 

I'm so happy that Loubser (Sonja's son) removed all the extra paraphernalia out of Chris' (Sonja's other son) room where the piano stands and swung the bed sideways so that we could try and get you into this room with that huge rolls royce of a wheelchair of yours.  The room looked lovely and so much more spacious.

When  I got there we sang our usual Hallo Dolly to each other - you with your slightly shlurry soft voice and me with my false notes.  You looked so lovely in your pink outfit today.  I know how long it takes for the carer to shower, wash your hair, dress, do your make up and dry your hair before you feel pretty enough to face guests.  Your lips were hopelessly to pale and I remedied that with my own very bright red lipstick.

It was quite a battle to get you into that room, wasn't it, with me holding my breath and pulling in my stomach (as if that would help) and my gammy knee.  I was tugging and tugging at your rolls royce of a chair and Lillian the carer was shoving the other end.  But we got you in eventually.  Nicely parked in the room - we were ready and waiting for the guests, Morne and Lara to arrive. But then I noticed that the room looked a bit bleak and lacked atmosphere.  We scurried around, found a lot of candles and dotted them all over the room.  A small lamp underneath the mirror, and two pot plants and some foliage transformed the room quickly into the perfect setting.  It looked so cozy.

The two cheerful musicians arrived = Lara a beautiful woman whom I am convinced to be a direct descendant of Frida Kahlo - only more beautiful.  Mornet and Lara immediately fussed and connected with you - I felt quite left out and jealous. :)    They were so very sweet with you.

The recital started and the music was so beautiful it made us quite giddy.  I've a feeling there were some angels that joined us in that little room - it just felt so special.  Do you remember when Julia Roberts said in Pretty Woman - 'it was so beautiful I almost peed in my pants'?

Johnny came home from work and sat next to you on the bed.  Every now and then he held your foot that was a bit jumpy at times.  Lara and Morne played effortlessly and passionately as if they had all the time in the world.  Yet I knew they took time off a busy schedule to come to you today.  


Afterwards, when  you were back in the lounge in your lazygirl chair, Lara sat close to you and listened tentatively to your whispering voice. You had a lovely conversation. Earlier, when we chatted briefly over tea, Lara casually mentioned to me that her Dad passed away suddenly a month ago.  She hid her sadness bravely.  You didn't see = but at one stage she excused herself and came walking down the passage where she burst into tears and sobbed bitterly - out of your earshot.  I folded her in my arms and just held her.  Overwhelmed - she was overcome with heartache for her own heartache, for everybody here's heartache and the heartache she knows will still inevitably come.

We dried our tears, blew out the candles, said loving goodbyes with promises to stay in touch.  And yes, today I cried a little again when I drove away from our house.  Most of the time I succeed in being the tough one - but now and then this old Dolly has a fragile moment too."

I guess this was one of those little things I was talking about earlier - it was nothing really.  But it was everything.

Love you Sissi.

(by Karin Holtzhausen)

The Room of Multiple System Atrophy

The Room

I am a room. I am a space where people dwell. Rooms don’t speak.  I have not been given the privilege to speak with an audible voice, express thoughts or emotions.  Yet, I have a story to tell. So, if I DID have a voice – there’s quite a few things that I would like to say. 

The Room

I guess by physical appearances I'm quite an ordinary room really: with one oversized couch in earthy tones; two handsome greenish arm chairs; a recliner chair; a coffee table on a greyish coloured carpet;  a cupboard that houses the TV; a lamp; a few occasional tables and a few pictures on the wall. My family is quite ordinary too and occupies me on a daily basis for everyday activities. In the evenings Strictly Come Dancing, Britain’s got Talent, cooking, Rugby and Discovery are still some of the favourite channels watched on the box. My décor was personally done by the lady of the house – rather tastefully classic and clutter free.  Her name is Sonja.

In winter I get quite cosy when the fire is lit, especially when we have an indoor barbecue.  In South Africa, where I dwell, they call it a braai.  It’s rather a sociable affair with much laughter and generous amounts of wine. Through the years I’ve seen people gather on birthdays, anniversaries and family dinners. Happy occasions. The view to the garden is quite charming through the double doors - especially in Spring.  It is evident that the garden happened as the result of a passionate gardener (i.e. the lady of the house, Sonja).

An ordinary room I was – observing everyday life of an ordinary family.  Quite content with my little life as The Room – here in the Strand, South Africa. Then one day things changed.

In 2010 Multiple System Atrophy (MSA) moved into this room and chose the lady of the house (Sonja) as its host.  (Multiple System Atrophy (MSA)* is a progressive brain disorder caused by loss of nerve cells in specific areas of the brain).

Along with it came some very bad emotions who moved in as well, making themselves very comfortable on the big couch, the chairs, the floor – even draped themselves over the coffee table and pictures as well.  The view to the garden looked drab and bleary.  MSA is rather cruel – it spreads itself, affecting the entire family. My family became miserable, anxious, angry and frustrated.  My favourite emotions, Faith and Hope had been asked to leave.  For quite a while sadness, unacceptance and denial clung to my walls. They refused to budge.  Discontent and gloom squeezed themselves into the already crowded room, while laughter and happiness took a long sabbatical. As a room I felt so helpless.  There was nothing I could do. Except wait and hope.

Over time – and I’ll be honest - it did take quite a while, things gradually improved.  It felt like forever before the cloud of sadness lifted.  Understanding and Acceptance kept knocking on that door overlooking the garden until they were eventually let in.  Hope, who had no intention of being left out in the cold, also snuck in one day and now cling to my walls.  Misery, along with Anxiety, Self-pity, Frustration, Sadness and Anger were given the boot – one by one they all left. I’m quite a contented room again and everyone is happy - most of the time.   Things settled into a new kind of normalish rhythm for my family – with MSA as the new permanent resident.  The family had already come a long way, but still had to figure how to embrace the changes that was inevitable. 

Religion per se has not been given the privilege of a specific chair within The Room, however, Faith and Hope occupy rather good seats and the couch has been reserved for Love. There have been some distorted opinions on miracles voiced in this space. Some thought there must be an absence of strong faith and fervently offered prayer for miraculous healing. Much discussion had taken place among church elders, theologians, priests, believers as well as sceptics – all in this room – on several occasions.   The consensus is that there are different kind of miracles – and physical healing is just one kind of healing.  To be healed spiritually and emotionally – that is a miracle too.  A big one.  And this latter miracle have come to dwell here and have changed things forever. 

Many visitors have been to visit since Multiple System Atrophy moved in.  Old friends, family and acquaintances bring cheer and gifts.  New wonderful friendships have been made here – with people who would otherwise not have visited – had it not been for MSA taking up occupancy here.  Visitors linger and chat about all kinds of things and most of the time forget about their silly little worries that wait for them at home.  They are fascinated to find someone with MSA living at peace.  The lady of the house, (Sonja), – she hasn’t been able to walk for a very long time and lies there in that recliner chair like a doll most of the time - being cared for hand and foot.  Her speech has become a whisper and you have to sit real close and concentrate to hear and understand.  Even the ability to hold a cup or blow the whistle to call a carer to tend to her needs is gone. Yet she manages smiles and whispers kind words.

Visitors leave with a gift every time.  Sometimes it is a gift of Hope.  Sometimes a gift of Faith.  Sometimes a gift of Love.  Sometimes they hit the jackpot and leave with gifts of all three. 

 “Three things will last forever—faith, hope, and love—and the greatest of these is love. - 1 Corinthians 13 v 13”.

There had been so many wonderful visits– really special ones and too many to mention right now.  Perhaps just this one.

The most recent visit was by a newly ordained Catholic Priest.  An Italian Catholic Priest. A good-looking young Italian Priest … with a guitar. Not only did he bring a loving message and prayers – the dear man sang!  The two ladies – the lady of the house with MSA (Sonja) and her crazy-ish curly haired friend felt  blessed with words of wisdom and grace.

After the visit the two friends reflected and giggled at the thought of perhaps considering to convert to Catholicism so that they can go to confession with Father Francesco of course.  They even discussed redesigning the Confession Room to fit all three of them in.  They hope that the dear man will visit again soon.

All these things have contributed to the fact that I am no longer just an ordinary room. My decor is still very much the same but believe me, I've lost the title ordinary and become rather extraordinary, unusual, blessed and sometimes quite fabulous.

So, had I been given a voice - I'd tell you all these things.  

(Written by Karin Holtzhausen)