if

you never read anything again in your life, read this.
If you catch me whining about my privileged plight, send it back to me.

I'm so lucky.

love, me

Terry Pratchett's Alzheimer's Speech in Full
this is bristol.co.uk ^ | March 13, 2008 | Terry Pratchett
Posted on March 16, 2008 11:56:20 PM PDT by Hetty_Fauxvert

My name is Terry Pratchett, author of a series of inexplicably successful fantasy books and I have had Alzheimer's now for the past two years plus, in which time I managed to write a couple of bestsellers.

I have a rare variant. I don't understand very much about it, but apparently if you are going to have Alzheimer's it's a good one to have.

So, a stroke of luck there then!

Interestingly enough, when I was diagnosed last December by those nice people at Addenbrooke's, I started a very different journey through dementia.

This one had much better scenery, interesting and often very attractive inhabitants, wonderful wildlife and many opportunities for excitement and adventure.

Those of you who's last experience with computer games was looking at Lara Croft's buttocks might not be aware of how good they have become as audio and visual experiences, although I would concede that Lara's buttocks were a visual experience in their own right.

But in this case I was travelling through a country that was part of the huge computer game called Oblivion, which is so beautifully detailed that I have often ridden around it to enjoy the scenery and weather and have hardly bothered to kill anything at all.

At the same time as I began exploring the wonderful Kingdom of Dementia, which is next door to the Kingdom of Mania, I was also experiencing the slightly more realistic experience of being a 59 year old who finds they have early onset Alzheimer's.

Apparently I reacted to this situation in a reasonably typical way, with a sense of loss and abandonment with an incoherent, or perhaps I should say, violently coherent fury that made the Miltonic Lucifer's rage against Heaven seem a bit miffed by comparison. That fire still burns.

I want to go on writing! Admittedly, that means I have to stay alive.

You can't write books when you are dead, unless your name is L. Ron Hubbard.

And so now I'm a game for real. It's a nasty disease, surrounded by shadows and small, largely unseen tragedies.

People don't know what to say, unless they have had it in the family.

People ask me why I announced that I had Alzheimer's.

My response was: why shouldn't I?

I remember when people died "of a long illness" now we call cancer by its name, and as every wizard knows, once you have a thing's real name you have the first step to its taming.

We are at war with cancer, and we use that vocabulary.

We battle, we are brave, we survive. And we have a large armaments industry.

For those of us with early onset in particular, it's more of a series of skirmishes.

My GP is helpful and patient, but I don't have a specialist locally.

The NHS kindly allows me to buy my own Aricept because I'm too young to have Alzheimer's for free, a situation I'm okay with, in a want-to-kick-a-politician-in-the-teeth-kind of way.

But, on the whole, you try to be your own doctor.

The internet twangs night and day. I walk a lot and take more supplements than the Sunday papers. We talk to one another and compare regimes.

Part of me lives in a world of new age remedies and science, and some of the science is a little like voodoo.

But science was never an exact science, and personally I'd eat the arse out of a dead mole if it offered a fighting chance.

Fortunately, I have the Greek Chorus to calm me down

Soon after I told the world my website fell over and my PA had to spend the evening negotiating more bandwidth.

I had more than 60,000 messages within the first few hours.

Most of them were readers and well-wishers.

Some of them wanted to sell me snake oil and I'm not necessarily going to dismiss all of these, as I have never found a rusty snake.

But a large handful came from 'experienced' sufferers, successfully fighting a holding action, and various people in universities and research establishments who had, despite all expectations, risen to high places in their various professions even while being confirmed readers of my books.

And they said; can we help? They are the Greek Chorus. Only two of them are known to each other and they give me their advice on various options that I suggest.

They include a Wiccan, too. It's a good idea to cover all the angles.

It was interesting when I asked about having my dental amalgam fillings removed.

There was a chorus of ? hrumph, no scientific evidence, hrumph???., but if you can afford to have it done properly then it certainly won't do any harm and you never know.

And that is where I am, along with many others, scrabbling to stay ahead long enough to be there when the cure, which I suspect may be more like a regime, comes along.

Say it will be soon - there's nearly as many of us as there are cancer sufferers, and it looks as if the number of people with the disease will double within a generation.

And in most cases you will find alongside the sufferer you will find a spouse, suffering as much. It's a shock and a shame, then, to find out that funding for research is three per cent of that which goes to find cancer cures.

Perhaps that is why, for example, that I know three people who have successfully survived brain tumours but no-one who has beaten Alzheimer's???although among the Greek Chorus are some who are giving it a hard time.

I'd like a chance to die like my father did - of cancer, at 86.

Remember, I'm speaking as a man with Alzheimer's, which strips away your living self a bit at a time.

Before he went to spend his last two weeks in a hospice he was bustling around the house, fixing things.

He talked to us right up to the last few days, knowing who we were and who he was.

Right now, I envy him. And there are thousands like me, except that they don't get heard.

So let's shout something loud enough to hear. We need you and you need money. I'm giving you a million dollars. Spend it wisely.

http://www.freerepublic.com/focus/f-chat/1986843/posts

Burn This

The news is heavy...there are beasts loose that make the long walks,
Auschwitz, Hiroshima, Bhopal and Chernobyl pale in comparison.
---Barry Lopez
from his eulogy for Edward Abbey, 1988

...When we first moved here, pulled
the trees in around us, curled
our backs to the wind, no one
had ever hit the moon--no one…

From our snug place we shout
religiously for attention, in order to hide:
only silence or evasion will bring
dangerous notice, the hovering hawk
of the state, or the sudden quiet stare
and fatal estimate of an alerted neighbor.

This message we smuggle out in
its plain cover, to be opened
quietly: Friends everywhere--
we are alive! Those moon rockets
have missed millions of secret
places! Best wishes.

Burn this.

---William Stafford, 1993
from the Move to California

We begin with thanks—to Bob Katz for the Lopez quote and to Scottalatyl for the Stafford quote. We continue as “we”, because it is imperative at this time that we understand we are not alone. We are in the company of countless others---creatures, plants, minerals; we are not at the top of the heap. We are dispersed throughout a divine and temporary mix. We remember we are dangerous.
Last week I walked through rose-gray light to the Deschutes Public Library. I went upstairs and took a seat with perhaps sixty other people lucky enough to live in Bend on this particular June night.
It had been ten years since I had last seen the compact man whose hair had gone gray, whose face was gentle. Barry Lopez stepped in front of us. “Thank you for coming to hear me,” he said
He read a story remarkable for the mysteries and hard wisdom hidden in its its austere elegance. He read of a marshland in Northern Nevada and violation and the failure to listen to the old knowledge of the people who have lived here long the colonizers.
When he was finished, he called for conversation. I’d brought two tapes recorded at Edward Abbey’s Memorial Service. I gave them to Barry and told him the bones of information the Hopi elder, Ferrel Secacaku had given a few of us in Spring 2008.
Barry listened. Then he spoke of watching Barack Obama receive the elders of the Civil Rights movement---and young African Americans born a decade after those battles. He spoke of Obama as an agent for transition.
My turn to talk was over, so I did not tell him and those around me that the Obama administration had recently opposed the Supreme Court reviewing the case of thirteen Southwestern Native American tribes vs. the Snowbowl ski resort. The ski resort had been granted permission by a lower court to make artificial snow from treated wastewater on one of the San Francisco Peaks. The tribes were hoping to appeal that decision at the highest level. They know that the act of making snow from wastewater on their sacred mountain is equivalent to pissing on the main altar at the Vatican.
I did not stand and tell those around me that the San Francisco Peaks are the holy of holies for the Hopi tribe. Their Katsinas live on the mountain. It is there that the Holy Ones make rain and snow. I stayed in my seat and I listened to Barry Lopez call for deep community, for listening to the old knowledge of indigenous peoples.
I thought of that which was loosed among us twenty years ago, and how the beasts have devoured so much. I studied Barry Lopez’ gentle face and, behind him through the huge windows, the delightful downtown of Bend, Or. I understood that it was hard from that vantage point to see the cracks continuing to open out in what we might believe is our world---and the beasts that have come through them and are with us.
Burn this.