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)

I found a rainbow in Multiple System Atrophy

Sonja and Karin

(If you've landed here for the first time.  This blog was created for Sonja who has Multiple System Atrophy.  It is also about friends and friendship.  This link is about us.) 

Love

Last week I discovered the colours of Multiple System Atrophy (MSA).  They were bold and bright - much like this fabulous painting of a rainbow girl by a young artist named Evie.  

(Multiple System Atrophy (MSA)* is a progressive brain disorder caused by loss of nerve cells in specific areas of the brain. This loss causes problems with movement, balance and autonomic functions of the body. (Autonomic functions are body functions that occur automatically, such as bladder control.)

There is a rainbow in MSA
(Painting by Evie aged 7 years and 5 months)

Now I need to tell you a bit about young Evie.  Her Daddy has had lung cancer since before she was born. He was diagnosed when her mum was 6 months pregnant with her.  You can imagine what a blow it must have been to them.  Life has been tough on him, her mum, on her and her little sister and its just not fair that young children and families should experience so much adversities. But the point I'm getting to, is that despite some really really really tough times, this little girl sees and experiences life in technicolor, and manages to express herself with extravagant boldness. I have a deep admiration for her and her little sister's ever ready smiles and boldness to life and think its correct to give credit to her mum and ailing dad for instilling that in them.  

On the last day of Multiple System Awareness month, 31st March 2016, we had a photo shoot with Sonja and a few close friends.  We had a rainbow filled day - vivid and bright, just like Evie's painting.

The whole affair was a bit of a tongue in the cheek arrangement, a spontaneous thought, just for a bit of fun more than anything else.  Partly with MSA awareness in mind, but ultimately it was an act of love for a friend, who happens to have MSA.  Such a simple little sentence;  'happens to have MSA'. (MSA is a cruel incurable illness which you can read about at some of the links at the top of this blog.)  No, let me make it easy for you.  Just click here. 

Despite MSA - Sonja manages to embrace life and living.   She has shown me that there is purpose in living - despite the most severe adversity - and that you can make a difference - despite losing just about all physical abilities.  Just pause on that thought for a moment.  Losing just about all your physical abilities.  

(Are you able to dress yourself?  Clean your house?  Open a drawer?  Bend?  Reach out to pick up the phone?  Talk?  Comb your hair?  Brush your teeth?  Bath / shower by yourself?  Scratch an itch?  Put on lipstick?  Dress yourself?  Go to the loo unaided?  Pour yourself a glass of wine?  Walk?  Drive a car?  Move to different parts of your house by yourself?  If you are  in a wheelchair - can you wheel it yourself?  Phone your child?  Speak clearly?  Sit without slumping forward?  Make yourself something to eat? Hold a book?  Type?  The list goes on and on and probably fill this page. That's what MSA takes away from you.)  This is just to give you a tiny glimpse into the life of an MSA patient and not to depress you.  Please read on.  It brightens up - I promise!

Before I continue to this colorful day, let me add that MSA not only affects the patient, but every single member of the family.  I have seen how heavy the burden is on Johnny, Sonja's husband.  Too guilt-ridden to visit any of their old friends, or allow himself to do anything remotely enjoyable.  It doesn't feel right without his sweetheart - his soulmate. It took a lot of persuasion to convince him to go away camping for a mere two nights with a friend.  MSA has a ripple affect - reaching far and beyond the patient. Its hard for their sons too, who live too far away to visit as often as they would like to.

Previously, I have spoken about the good, bad and ugly of this disease. There's a lot of bad and ugly, but heck, the 'good' has left me amazed. Since her diagnosis, we (Sonja and I) have met a number patients and their families personally.  In each and every one of them, the thing that has touched me the most, was that something unique that clings to all of them.  A softness.  An understanding. Compassion.  Its things that money don't buy. Love.  

'We' have lost a few patients.  Friends.  We would never have met them, had it not been for Sonja and her diagnosis with Multiple System Atrophy.  Fragile, hurting family members have come to meet us. Some not yet.  But there's an established bond, an indescribable connection once they have met Sonja.  I worry for them sometimes.  They've showered her with love and with gifts.  I believe it helps to carry her - and them.  They look at Johnny with an understanding that nobody else has - without having to say a word.

These are some of the realities.  So,  you see, MSA is a multi coloured illness.  Good, bad and Ugly. But the good - that is the absolutely bloody best.   

Let's get onto the good.  And this particular day was better than good.  It was fabulous.  It was marvelous.  No amount of money could buy it.

Over sized bold big beautiful flowers to set the scene and backdrop of a fabulous day.  Thank you to Danny for these props.

I made a short list of names of girls (yes I still think of us as girls) who I thought have been adding extra meaning to Sonja's life the past year or so.  The idea of the photo-shoot was presented to Sonja and I asked her to come up with a list of names of people she felt fitted that bill.  We came  up with the same list.  Her physical deterioration has been quite evident and we agreed that we would continue without her (heaven forbid) should she not be well enough to attend.  Can you imagine - a photo-shoot without the main character.  We'd have none of that!  Pfft.  Come hell or high water - the way was paved to get her there.  

The ladies were informed and a date was set.  Our first dilemma was a photographer because Laurette who normally does all the photo shoots for Sonja and our MSA days, was now chosen to be in front of the camera for a change.  Multi talented Catherine thankfully volunteered when she heard that Danny, who also happens to be an accomplished stylist, would be on set.

Much had to be considered before we could get to the shoot stage.  A room had to be picked in my house where Sonja and her wheelchair could have easy access to. A studio set. No stairs.  Door wide enough. Parking close to door.  A bed should she need to rest. Sufficient natural light.  A sunny day was requested. The said room had to be reorganized and half emptied for us to set a backdrop - thanks to Danny - large over-sized flowers that she had used in another photo-shoot.  Furniture was piled onto a heap and shoved in a corner.  A long curtain pole was temporarily fixed for the over sized flowers to be hung and carefully arranged with the help of fishing gut and umpteen ups and downs on a ladder. At 2 am when the rest of the house was sound asleep.  Said curtain pole with all the flowers precariously in place only tumbled down four times.  Expletives, not blog friendly,  were used at these intervals. 

Many instructions were sent to the girls: date, time, what to wear (all white), make up, purple nails, etc and not to forget champagne and snacks. Champagne repeated a few times. They were briefed of the morning's events - all taking into consideration Sonja's condition - and the purpose of the photo shoot which ultimately boiled down to one simple little word.  Love.  I salute all the girls for nodding furiously at everything I requested and dictated and ordered them to do.  Thank you.  

The day arrived.  It poured with rain early in the morning.  Miraculously it cleared round about exactly the time we knew Sonja would be ready to leave home.  When Sonja arrived - thank you to faithful Johnny and carer Lillian - the girls all fussed over her to say hello and then they were all bundled into another part of the house where they got to know each other better. With champagne. Although we were all Sonja's friends, not everyone knew each other.  Danny and I then spent time alone - with a bit of champagne - to do her make up, fluff up her chair and get her ready for some photos with the girls.  Sonja's drinking cup was regularly topped up and the twinkle in her eye got brighter throughout the morning.  

Getting to know one another - in good spirits (Laurette and myself unfortunately not in pic)

Danny styled each one of us with a bit of purple paraphernalia.  A flower here.  A feather boa there. A mask for this one. Beads on that one. A purple ribbon around each one's wrist.  Catherine was behind the camera capturing just about everything and was all  over the place all at once, without us even realizing it. Her boyfriend Eben, also an amateur photographer, but with old cameras and film, can you believe it, came along for moral support. He was also clicking away.  Quite a team they were.

Umpteen photos were taken,  Although the girls were dressed in 'boring' white, it was one of the most colorful days I have experienced - much like Evie's painting.  The ladies were fabulous.  They pranced and laughed and acted silly non-stop.   Despite the blank palate - the morning was absent of boring and bleak. Sonja laughed and glowed.  

MSA (Multiple System Atrophy) is not a kind illness.  In 2010 after Sonja was diagnosed I think the color black might have been the chosen color.  But today, I saw the color of love, shown by a bunch of girls for their friend.  And it was bold and beautiful.

Emilene, Laurette, Marianne, Ilse, Susan, Marlene and Liana - thank you for your friendship. One of the chosen girls could not make it, which was such a pity.  Anchen we missed you. Each of you mean a lot to Sonja. Don't ever discount that. And while she was in Hospice for a few days while Johnny and the carers had a break - you stepped up to the plate with your regular visits and little gifts. The biggest gifts of all of course were yourselves.  Thank you.

I share a few of your sentiments:

"Sonja has always and will always have a special place in my heart. "

"My Sonja-visits are filled with memories of her travels in the Kalahari and Orange river.  In our imagination we swim; we hike and we laugh.  Especially - we laugh."

"Hebrews 13 says: 'do not neglect to extend hospitality to strangers, for by this some have entertained angels without knowing it'   Sonja continues to teach me how a child of God deals with adversity."

And now, let the photo's tell you the rest.

Thank you for reading.  

Sonja arrives (it probably took her the better half of 3 hours to get ready and get here - with the help of a carer)

Susan being styled

Marlene's turn for a bit of purple ribbon around the neck

Marianne getting the mascara right

Hold still for that bow

Marianne getting the giggles

Sonja's husband Johnny

Time to give Sonja her makeover

Hold still Sissi

Almost done

First glimpse in the mirror

All is revealed

All smiles and ready to roll

Wow - look at you!

Lights. Camera. Let's go!

with Laurette

with Liana

with Marlene

a little private giggle

loving touch

Mooi

with Laurette

with Emilene

with Marianne

Purple bits

with our lovely stylist Danny

with Marlene

with Ilse

with Liana

with Laurette

Susan with Sonja

We got a bit silly

Hello Liefie

Cheers!

 

I might have repeated some photos.  Can  you blame me?

I have to end with my personal favorite photo
Sissi and Sissi

The profound words above Evie's rainbow painting is Hope, Love, Joy and Peace. Terminal illnesses deal some heavy blows in the lives of the nearest and dearest of those affected.  Yet I have witnessed  rainbows emerge despite those heavy blows.  Brilliant bright rainbows.  Just like Evie's painting. 

(ps Evie - I would love to buy your rainbow girl from you.  It was the inspiration behind this theme.  pps - love to you, Jessie, Mommy and Daddy. x)

A huge thank you goes to:

Catherine for taking photos and the long hours fine-tuning the final ones for this blog.

Eben for assisting.

Danny for styling.

Laurette for the use of her camera.

All the girls for their love and support.