'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?
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 readthis article written by Sonja in 2013Looking 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.
Because lately, you cannot read it yourself anymore
the words swim all over the screenbefore 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.
Should this be your first visit to our blog - please go tothis 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 Pageand 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 Things. It 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.
