Today, we had one of our infrequent MND support group meetings at the PE St FranciS Hospice.
And, I am angry!
The land, indeed the world, is awash with tributes pouring in for the late Joost van der Westhuizen.(if the media is to be believed!) And rightly so!
Don’t get me wrong. Death is so final, so permanent, and no one, except those nearest and dearest, experience the loss and the sadness so intimately and so emotionally. We all experience it at some time or another, but never all at the same time. Don’t tell me you know what I feel, or how I feel, or I am so sorry about your loss , we share in your grief … A few days later, all is over and forgotten and the closest are left filling the emotional gaps.
So, as much as we can, we, too, extend our sympathies and condolences to Joost’s family and friends. We say we are sorry. We know how it feels to lose loved-ones to death.
But why does it take a Joost to get ill or die? Why an Ed or a Bongani or a Dave or a Mandy .. Before he became ill, I did not see the same enthusiasm about or interest in MND. After the memorial service on Friday, I guess it will all disappear!
I am angry! The President and his ministers issue statements like gone roo soon, loss for the country, he set an example, he led the way, Captain Courageous, … but why not the government? The Caprains of Industry? Surely, there’s is the responsibility to lead the way in finding a cure. In helping us, in making life easier for us, in eradicating this scourge from our society. Why should it have been Joost’s responsibility?
After all, he’s a man. He’ just a man.
I am angry because our government turns a blind eye. They can’t look after 94 psychiatric parients, let alone the 240 odd MND patients in this country. There is no money budgeted for MND research – in fact, there is no research facility in the land. We are dependent on family, friends, corporate donations and the goodwill of the community. Not even medical AIDS assist because these Neurological illnesses are not defined as prescribed minimum benefit illnesses in terms of health legislation.
I am angry because come next Monday, I will still be cared for my my family and my health careers from the Hospice, I will still be fighting for my medication to be paid for by the Government Medical Aid. There will still be no meaningful research done in SA, there will be no cure, and we will be learning to cope with this death sentence that has been dealt us, without any meaningful assistance from the government.
I am angry because despite all the good words about Joost (and I guess they are all true – I don’t know, I never met the man!) nothing is said about Bongani, a member of our group who also passed away this month. Surely, living with MND is difficult enough, but couple that with living in a shack, not having electricity or running water, or a plate of food and only the hands and love of his wife Ro assist him. I will never forget the sight of his wife feeding him crum for crum from our plate of sandwiches …surely he should also be saluted for his courage , his fortitude, his perseverance . In many ways, he was a far bigger fighter than Joost – a Captain Courageous.
I am angry that the J9 Foundarion, despite being lauded for its community assistance, did not respond to correspondence regarding sufferers plight and their needs. They selectively assisted people to encourage their marketing needs. What research have they undertaken, I most respectfully ask, and howdoes that help me or Anne or Mandy or Bongani or ….?
I am angry because the so called awareness of MND that has been generated by the Foundarion still leaves the general public including yourselves in the dark. Even the press releases were contradictory in terms of the illness.just ask yourself how much do you know now about MND that you did not previously know?
I am angry because I guess it’s just not your problem. It doesn’t affect you. After all, you don’t have MND! Joost was chosen, and Dave and Anne and Keith …
I am angry because despite Joost’s team talking on TV about the MND research wing named after Joost, in reality there is nothing, not even a Welcome desk at any facility in the country.
I am angry because thousands of women (and men) will attend Loftus Versfeld tomorrow. Because they knew Joosr?, no! Because he helped them, no! Because of his exceptional athletic ability, possibly! Because of his good looks, his piercing blue eyes, his erstwhile six pack, his abs, many! Let’s face it, ugly people like myself and others start off at the back of the queue. Life is just easier for the bold and the beautiful. I am angry.
Will those people attendingcontribute to MND research, help other parients, set up trust funds, build clinics? I doubt it! I am angry.
Where are our so-called Friends when we need them? If there’s money to be made they’ll be there. Otherwise the ll grace rhe pages of our newspapers and organise more meetings and make more speeches and take more pictures!
Yes, I am angry!
Mandy Gurr- Snymann has been trapped in her body for 17 plus years. She posts the following on her Facebook page yesterday:
“As a fellow Motor Neurone Disease patient, I thank God for coming to take Joost home. At last he is free from the body that had become a jail … free from this thief of an illness that is cruel beyond words. May his soul rest in peace. I pray that God will comfort his children, family, friends & carers, bringing them peace. I send my love & thoughts to MND patients that I know & think of those we have lost with fondness xxx
I have a right to be angry!