Tuesday, January 3, 2017

2016 - The Year MSA Came Like a Thief in the Night

Should this be your first visit to our blog - please go to this link for a brief summary.

"Sometimes I wish I was a genie
and could hold time in a bottle
The road's getting bumpy and dark
But I'll keep looking and finding moments of spark

Last night I visited again
and sat next to you for quite a while 
Held your hand
Touched up your lipstick, powdered the shine your face
And wiped the red smudge I left on your forehead

You muttering your non-stop little mutters
I tease you about stupid stuff as if nothing else matters
Your hooded gaze drifts from the crap on the tv to me and then lingers on something on the ceiling that only you can see

We listen to the Duet Mornet and Chris recorded on your samsung
Over and over again 
I press the play button again because your fingers won't anymore
I see the delight in your face as you hear it again and then once more.

Johnny's learnt not to interrupt when I'm focused on you
sits there quietly and watches us two
fills my glass with chardonnay
a small whiskey in your sip cup.

Later he tells me 
Who has been to visit you over the last few days
Who has popped in briefly and then fled
Who stayed briefly longer and then also left and wept.

Then Johnny and I reminisce about old favorite movies you've watched
long ago 
Tea with Musselini; 
Driving Miss Daisy, Dinner for One; Life is Beautiful, 
You try so hard to make yourself understood 
probably remembering every one as usual
but the words get trapped in the muttering 
and slide back down your throat in to the abyss of forever lost words.

I try to ignore your eyes with a few trapped tears
ask to watch Dinner for One again with you like I have done the last couple of years
We all laugh yet again at the stupid antics of the clumsy clot James
and the prim and proper delightful Miss Sophi 
as if we've seen it for the very first time.

We watch it twice 

and I take a little video clip of this moment and whatsapp it to your Chris and Loubi.

I overstay as usual till you've had your dinner 
patiently offered to you by Ursula bite for bite
Time to go and I leave some more lipstick smudges on your forehead 
for her to clean later when she puts you to bed.

Driving home I ponder 
as I so often do 
after leaving you
and wonder
how come I don't also end up weeping at your side?
Am I in denial or become  blasè ... 
What's become of  my usually soppy heart?

The conclusion I've come to is none of the above
and think for now I will simply cling and embrace
to this thing I've finally figured
it's called Grace."

For those that are regular followers of our blog and our Facebook Page and personal friends of Sonja, you are most likely aware that her condition has deteriorated.  It is hard to imagine how difficult and frustrating it must be now that she can no longer use her hands at all as well as the ability to speak.  I sometimes find solace in writing her letters - often on her facebook wall.  Then I read it to her later on as well as the responses.  I know it brings her comfort to know that there are still people out there that care.  

In the beginning, we read umpteen blogs written by patients and carers - sometimes very graphic and depressing, Sonja and I agreed a long time ago that we will keep this blog positive as much as possible.   Forgive me if I falter now and then - it has become a challenge as her condition is deteriorating.  Despite things looking pretty bleak at the moment, we still manage to laugh about something silly every time I visit.  Normally I just sit by her for a while and hold her hand, stroke her and talk about this and that.  I still sing Hallo Dolly to her every time I walk in the door and I know it pleases her judging by her body language.  She can't sing with me anymore but her eyes do.  

I'll share a few photos and thoughts of the past year here - just like I would if I was still writing to her, the intention being a record of random events as well as keeping those interested up to date. Although a challenge - I'll try hard to refrain from turning it into a depressing blogpost.   I ask that you rather see it as a diary of two girls and their friendship.  

Dear Sissi,

I put up your Christmas tree again 

Can you believe another Christmas has come and gone?  The past year has taken its biggest toll health-wise on you.  I'm trying my best to write politely when in actual fact MSA is a bastard of an illness and stole so much of you. Your voluntary mobility has decreased drastically and you are no longer able to use your hands at all.  The biggest loss is of course your speech that has taken a hike - and so fast - without giving us sufficient warning.  I do miss your lovely voice so much.  Along with that your eyes struggle to keep a long enough gaze - sometimes closing as if they are tired and you drift off into little snoozes quite often.  

Despite various attempts of all kinds, we have not managed to find a way for you to say even yes or no - making it very difficult for us all to figure out just about anything.  Your carers probably understand you the best and take care of all your physical  needs.  They are truly amazing and the bond that has formed between you is very good.  I know that you have made it your business from the very start to be a 'good patient' - making caring for you easier but by no means a walk in the park.  

Let's reflect on some of the things that happened this year.  Hopefully it will soothe some of the anguish that I sometimes see in your eyes these days.

Glowing Sissi's.  The two of us draped in Christmas lights
 the night I put up your Christmas tree.

The arrival of Topsy on 21 February 2016.  What an amazing
bundle of joy and energy in such a little body.  He has been
such a blessing in your household.  He was a gift from an
anonymous friend :)

You needed a wider and taller table next to your chair.  I found this one
and had fun painting it for you.  

For March MSA Awareness we had a photo-shoot with a few close friends. We all dressed in white with purple trimmings.It was such a fun day and you loved all the fuss and attention and you looked so beautiful.  Link to that wonderful day here.(viewed 1449 times)

Early in March, with a bit of persuasion from your awful Sissi, an appoint-ment was set up with Hospice, in preparation for you to go there for a few days at the end of March so as to give the carers and Johnny a short break.  Johnny went camping with a friend.  We agreed that the Hospice experience was not the best and if at all possible we will avoid a repeated visit.  On a positive note, I think you liked the constant stream of visits from caring friends. 

On 25 May we braved the streets again with the Sissi  Bissi.I took you to the beach.  Here Lillian dries your hair before we go out.  It was a fabulous morning.  We even ended up at a coffeeshop for a cuppacino.  It almost felt like the old days.

You so enjoyed watching Vincent the sand sculptor

June 2016 - Catholic Priest Father Francesco came to meet you and
sang a few songs.  We were both
a bit smitten by the handsome priest
who was so sweet to you and we were both
silently amused when he asked you to remember
him in your prayers - especially for his lack of patience.
Video clip included in the blog The Room - (3013 views to date)

Artwork as a gift to you from Father Francesco

I think I could have opened a florist already with all the flowers I've brought you :)29 June 2016 

Sometimes when I go away I leave your name in the sand

I left your name on the beach at Robberg

Other times I look for heart stones on my  little jaunts.  The small ones I bring to you - the big ones I leave there - for you.

This big one left for you at L'Agulhas 

Also at L'Agulhas

Left for you at the rustic wooden cross at Rasperspunt - also at L'Agulhas

Picked up in the Kleinkaroo and brought home for you 

In September Lara and Mornet came to play a duet.  The subsequent blog
 got surprisingly good reviews. Magic in the Little ThingsIt was quite a thing to quickly reorganise Chris' bedroom where the piano
lives.  We moved the bed around to accommodate your enormous wheelchair.
Add a few bits of foliage, a standing lamp for ambiance and a few candles
dotted all over and voila we had a bit of magic going on. :) 

3 October 2016 used to be a big event - the highlight for you
regarding MSA Awareness.  Sadly this year it had to be cancelled
as Johnny was recovering from a stroke and the family situation
was fragile.  We decided on a very small personal gathering with
only a few friends.  It might  not have been big in numbers but
it was a perfect day.  Blog post
 (Photo by Laurette van der Merwe)
 So, there's it -  a few things about 2016 - wrapped up in a few pics and words.
I'll end with my favorite comment in our TV Debut - 'I'm not going to be miserable'.  We'll both cling on to that.

(Written by Karin Holtzhausen)

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