thoughtsfromthepanda

I do my best thinking while driving. I drive a Fiat Panda.

Archive for the tag “MND”

Memories of MND: Goodbye, Joost van der Westhuizen

I couldn’t let the final passing of South African rugby hero Joost van der Westhuizen, after his six-year battle with Motor Neuron Disease (MND), go by without putting down a few thoughts.

Joost was part of the Springbok rugby team that won the Rugby World Cup in 1995 and – with the input and support of our late, great then-President Nelson Mandela – at least temporarily helped to unify a nation.

madiba

Joost died on Monday this week, 6 February 2017, and since then I’ve had troubling memories of my own late dad’s suffering, with the same disease, rise to the surface of my mind at unexpected times.

And make no mistake: Motor Neuron Disease is a disease of true suffering, especially at the end.

joost-mnd

I am glad that today I saw and heard the eulogy given at the memorial service by his wife, Amor. (Technically I suppose you could call her his ‘estranged’ wife, but what does it really matter at times like these?)

She spoke in front of dignitaries who included members of the 1995 SA Rugby World Cup winning squad, South Africa’s Sports Minister Fikile Mbalula, and Bill Beaumont, chairman of World Rugby‚ who flew out from Dublin to attend the memorial service.

amor-on-stage

I thought that Amor was brave and dignified. She managed to say her goodbye to Joost at Loftus Versveld Rugby Stadium without breaking down. And she was honest in her admission that once, she and her husband had been in a fairytale romance…

joost-wedding

…which had then hit some serious bumps along the way. The scandals and the trying times are out there for all to search for and read and point fingers, if they want to.

However, Amor rose above that and thanked her late husband for the priceless gift of their two children, and for his fighting spirit and the memories of the good times.

They never did get around to divorcing, Amor and Joost, and whatever their reasons were for not legally finalising the death of their marriage, does it really matter?

What matters for me is that there was deep love, once, and there were two children created who had all this enduring love then poured into them.

And so now I wish the children and Amor, and all Joost’s other close family members, strength through this time, and finally peace.

For me, my father has been gone after his own battle with Motor Neuron Disease for 15 months already and I continue to miss him, at times, with an ache that is sometimes like a physical stab in the heart.

If I ever become a millionaire I will make it my quest to support today’s research into Motor Neuron Disease, to try to rid the planet of this scourge in the way that, once, we as human beings managed to eradicate smallpox.

Rest in peace, Joost.

joost

http://www.iol.co.za/sport/rugby/joost-believed-he-would-beat-the-disease-

7696858http://www.iol.co.za/sport/rugby/zuma-declares-provincial-funeral-for-joost-

7696476http://www.heraldlive.co.za/news/2017/02/09/95-heroes-carry-joosts-casket/

 

 

Close encounters with celebrities

In South Africa we have a well-known former Springbok rugby player, only 40 or thereabouts, who once led a charmed life. About six years ago, I sat across a table from him and his wife for a short while. Almost everyone in the room was wearing white towelling robes and matching slippers, which sounds a bit odd, but was explained away by the fact that we were all, for various reasons, visiting a day spa at the time, and this was prescribed attire.

As I was then more than six months pregnant, the fluffy white towelling robe and slippers wasn’t my best look for appearing in public, but that was the deal if we wanted the back massages and other treatments. We also had to listen to a presentation about washing machines. You get the picture – it was a carefully crafted product launch, and I was there as part of the merry group of media and celebrities who’d been invited to meet the washing machine for the first time. I was in the media section of the room – not one of the celebrities. Just to clarify.

Being pregnant, as I said, and wearing a towelling robe, I became even less comfortable when I spotted an aging roué with whom I’d once had some unfortunate dealings in a previous job working for a radio station. At the time one of the country’s hallowed band of rock DJs, he had on one occasion refused to get out of my car until I ‘gave him a kiss’. He’d had a lot to drink at the time and it is a long story, which I won’t elaborate on now, but suffice to say that whenever I heard his slightly raspy smoker’s voice on the airwaves thereafter, I cringed somewhat. And for the record he was bundled out of my car sans requested smooch.

Anyway, it was an odd sort of day at the product launch and I remember trying very hard to avoid the aging roué. I simply didn’t want to be recognised, especially as I didn’t feel I was quite looking my best at the time, and so, truth be told, I didn’t pay that much attention to the charmed and charming rugby hero and his attractive, vivacious wife. But I do remember that they were both extremely pleasant and polite to all the other guests, and very nice about the washing machine.

And so it was a shock when the news broke that the charmed rugby hero and his bubbly wife were going through a relatively acrimonious separation and divorce. Barely was this an old story in the South African public’s mind when we then learned that he had been diagnosed with a very severe form of motor neuron disease. At such a young age, the news must have been utterly devastating to him.

I realise this more completely now that I know a little more about the disease. The very next year my own father was diagnosed with the same illness. Although my dad was obviously a fair bit older than 40 at the time, the news was still dreadful for us all.

At this point, while we were starting to wrestle with my dad’s diagnosis, the rugby hero had moved on from some stormy and unfortunate personal moments, and by all accounts was dealing with his disease with courage. He had started a foundation to help fellow sufferers and from time to time, a story about him would still appear in the media. He seemed to be doing better than expected and had vowed to play something of a ‘human guinea pig’ role, if he possibly could, in the fight against his symptoms and the illness invading his body.

When I recently visited my GP for the sole purpose of getting something to help me temporarily deal with my emotional pain about my father’s illness, I picked up a magazine in the waiting room, and by coincidence it featured an interview with the rugby hero. I was astonished at how good he seemed to look in the photos, and even more astonished at seeing him photographed doing a work-out, but I did wonder if the pictures hadn’t been photo-shopped a bit.

Meantime, my dad was not doing so well. As the days went by, he seemed to shrink on an almost weekly basis before our collective and sorrowful eyes.

And so recently I finally decided to brave the quest for the truly detailed information I had been avoiding.

As a first step, I accompanied my sister and my dad on an appointment to my dad’s neurologist. My sister and I wanted to meet the doctor and hear what she had to say.

I liked her. I met a woman who is probably a bit younger than me (oh how that makes me feel old!) and I thought that her funky dress sense showed an ‘out of the box’ way of thinking that I found comforting.

She was good to my dad. She also told him he was doing well. My sister and I listened to her words and wrote up some notes after the visit. In a way I felt that I was making some sense out of the fog.

But the knowledge was very painful and later that day, back at work after the visit, I left my desk and went down to the office coffee shop, so I could cry bitterly without being seen by my colleagues. Just to keep a certain amount of dignity intact.

A few days later, I went onto a search engine and typed in the words ‘motor neuron disease’, but what I found there only made me feel very low again.

With the tears once more not far from the surface, I decided to go on the website that had been started by the former rugby hero, and there, for the first time in a long time, I felt a little bit of hope coming back into my mind and my heart.

He looked good.

He looked really good.

His website was a story of simultaneous acceptance and determination: having accepted his fate, he was nonetheless going to try to live his best and live his longest, through a combination of cutting-edge drug treatment, where applicable, and an appropriate diet and exercise regime with his doctor, biokineticist and other specialists.

I began to feel that the photos I saw in the magazine that day hadn’t necessarily been photo-shopped after all, and was moved to send him an email.

In my email I wrote, very briefly, that my dad had been recently diagnosed as a fellow sufferer; that it was still a dark and sad journey for me and my family, and that I wished the rugby hero well. I thanked him for his courage and his example.

Then, deeper into his website, I read a message of hope from his doctor and discovered that she was my dad’s doctor also. A little flame of hope that had been almost extinguished started burning a little stronger again.

 

The doctor wrote:

“…In the last several months I have had an influx of MND patients from all over the country desperately seeking a second opinion, a glimmer of hope and some answers. Many of them sent away from their original practitioner with the diagnosis and a handshake saying there is no treatment, sorry nothing I can do! This is not how we were taught to practise medicine – remember where there is life there is hope and this is not a degenerative disease of “old” people – surely we cannot throw our hands up in defeat!”

Thank you doctor…

But funny enough this little story doesn’t end there just yet.

Armed with a print-out from the rugby hero’s website to take to my dad, I left work that evening in a very positive mood, with the little flame of hope still flickering.

My office is on the tenth floor and so, in the early evening when most people have already gone home, I always expect a smooth ride from the tenth floor to the ground floor with few or no interruptions in between.

With three of us in the lift, the doors opened after a long smooth ride down and I exited quickly onto what I thought was the ground floor. Still chatting to my colleague (still in the lift), I suddenly noticed someone in front of me trying to get in. Mainly, actually, I noticed her rather beautiful high-heeled shoes as I was trying to exit, and then realised that we were blocking each other.

Half a second later I realised that the woman in front of me had legs to die for above the amazing shoes. As we did a little dance around each other – she trying to get into the lift and me trying to get out – I then realised, yet another half-second later, that the beautiful legs were topped by an utterly amazing body in a little black dress, and a vivacious, well-known face I couldn’t quite place – and that I was not on the ground floor, but the first floor. She was trying to go downstairs and I was blocking her way like an idiot.

I was still laughing and trying to excuse my unintended clumsiness when I suddenly realised that this petite and incredibly shapely goddess with the great shoes was the rugby hero’s estranged wife.

“Oh dear, this isn’t the ground floor yet… my mistake… so sorry…”

She smiled at me warmly and got in the lift.

And was immediately followed by the rugby hero, who’d been standing behind her all the while.

“That looks just like…” said one half of my brain.

“Yes, that’s because it is him,” replied the other half.

 

It was a very surreal moment.

The odds of the timing were astounding.

“I emailed you just a few hours ago!” I wanted to blurt out – but of course couldn’t.

Not wishing to stare at him or the goddess – the South African public knew some of their story from the media, after all, and the rest of us in the lift were trying to be polite – I nonetheless found myself risking a small glance. I needed to see what he looked like.

In that small glance, in that small time-frame as we travelled just one floor down, I caught his gaze nonetheless, and for about half a second we exchanged genuine eye contact and genuine small smiles before I looked away.

I thought that he looked amazing. His body was straight and his gaze was clear. He looked as good as he had looked in the magazine article where I’d thought the photos were retouched.

 

As I write this, I don’t know yet what my close encounter means in the grand scheme of things. I am not expecting any major miracles, but I do now feel that perhaps a small one here and there might be asked for and, more importantly,  might be granted.

Since that day, and perhaps fortified by my story and by the knowledge that he shares a doctor with the rugby hero, my father has become a little lighter in his mind and a little fuller again in the face. And he has finally made a booking with his own biokineticist and started his own exercise regime. It’s really early days but – aided and encouraged by my mom – he has started trying to work with his body in the best possible way: like the rugby hero is doing.

You can’t start dealing with something until you know what you are dealing with. My family has started dealing with it.

There are still stormy clouds overhead but I think we have all started seeing the sun peeking through from time to time – at least for now.

It’s a new mantra – ‘at least for now’.

And so today I shall choose to be happy.

Today I shall revel in my family and their combined presence and different individual personalities – in my husband, my children, my parents, my sister.

I shall laugh at the exuberant dog doing her ‘happy dance’; I shall make plans for Christmas present shopping; I shall enjoy quiet nights in with a good book as well as occasions with my girl friends; I shall read my boys bedtime stories and sing with them at Sunday school; I shall stroke the cats; I shall enjoy conversations and glasses of wine with my husband.

I shall share and enjoy times with my boys and their father; I shall plan to invite friends round in December; I shall go for walks.

I shall look forward to time off work at the end of the year, while still being grateful that I have a job which challenges me and provides me with colleagues I can learn from and laugh with.

I shall enjoy the rain on my body, the sun on my upturned face and the green summer unfolding before my eyes.

As I have done for some time now, I shall continue to do all of this, and more.

At least for now.

 

 

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