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.