Geoff Coupe's Blog

Reflections on life at “De Witte Wand”…

Category: Health and wellness

  • RIP, Hitch

    So, Christopher Hitchens is dead. He has left Tumortown and passed beyond the Land of Malady, after leaving us with some last words of advice on dealing with mortal illness.

    I’ll miss his voice and his writings. We now have all that we are going to have from him.

    I can’t resist adding his widely-quoted words of wisdom:

    “The four most over-rated things in life are champagne, lobster, anal sex and picnics.”

    Like Christopher Hitchens, I’ve enjoyed them all. Over-rated? Possibly. Enjoyable? Certainly.

    RIP, Hitch.

  • The Kindness of Strangers

    In today’s Observer, Henry Porter writes about a revelation that his friend, Gilbert Adair, had in the months before he died. It’s worth reading. And it’s a reminder that for some people, nursing remains a vocation, rather than a service from which profit must be wrung. Treasure them.

  • The Scientific Method

    The scientific method is the process by which science is done. To quote from Wikipedia:

    Scientific method refers to a body of techniques for investigating phenomena, acquiring new knowledge, or correcting and integrating previous knowledge. To be termed scientific, a method of inquiry must be based on gathering empirical and measurable evidence subject to specific principles of reasoning. The Oxford English Dictionary says that scientific method is: “a method of procedure that has characterized natural science since the 17th century, consisting in systematic observation, measurement, and experiment, and the formulation, testing, and modification of hypotheses.”

    Equally important in the scientific method is the sharing of results and peer review:

    Scientific inquiry is generally intended to be as objective as possible, to reduce biased interpretations of results. Another basic expectation is to document, archive and share all data and methodology so they are available for careful scrutiny by other scientists, giving them the opportunity to verify results by attempting to reproduce them. This practice, called full disclosure, also allows statistical measures of the reliability of these data to be established.

    It’s therefore a bit odd when criticism of an experimental cancer treatment results in those voicing the criticisms being threatened with legal action.

    Enter the Burzynski Cancer Clinic and one Marc Stephens who may, or may not, be a lawyer, but who claims to be acting on their behalf.

    Mr Stephens has been very busy of late. He’s been sending blustering letters to Rhys Morgan, a 17 year-old schoolboy:

    Rhys,

    This is my THIRD AND FINAL WARNING to you.

    Please convey this message to your entire Skeptic Network, which includes but not limited to, Ratbags.com, thetwentyfirstfloor, quackwatch, etc. I represent Dr. Burzynski, the Burzynski Clinic, and the Burzynski Research Institute. I’ve attached Azad Rastegar, and Renee Trimble from the Burzynski Clinic for your confirmation.

    In the following weeks I will be giving authorization to local attorneys in multiple countries to pursue every defamation libel case online, including your online libelous statements. I suggest you shut down your entire online defamation campaign about Dr. Burzynski, and remove ALL recent or previous comments off the internet IMMEDIATELY. The minute you post any libelous comments online about my client I will pursue you and your parents/guardians To the Full Extent of the Law. I have no obligation to train you, or teach you, the meaning of defamation. Google it, or go to the library and research it.

    This is a very serious matter. Please confirm your mailing address, which I have on record as (my address). If you do not cooperate an official legal complaint requesting punitive damages will be mailed to that address. I will be contacting your school as well to inform them of your illegal acts.

    As Rhys says:

    Since the initial email, I have discovered others have received similar legal threats from Marc Stephens including Peter Bowditch of ratbags.com, who blogged about Burzynski eleven years ago, but is only now receiving this legal threat. Another blog threatened includes Quackometer.net from Andy Lewis, A.K.A Le Canard Noir. You can find a blog about his ordeal with Marc Stephens here:

    I posted the blog so that patients, their friends and families would be aware of the whole story about Burzynski and his unproven therapy. I want them to be aware that the treatment seems to be in a constant cycle of trials generating unpublished results. As Dr Howard Ozer, director of the Allegheny Cancer Center in Philadelphia, said – it is scientific nonsense.

    In fact, the actions of Mr. Stephens may have backfired a little. There is now a long list of posts popping up drawing attention to this interesting interpretation of what the scientific method entails.

  • A Public Service Announcement

    If, like me, you have no idea how to react if someone has an epileptic fit, then help is at hand. The Epilepsy Action group has a web page and video to illustrate what you should do.

    If you are as clueless as I was, then watch it and learn.

    A tip of the hat to Vaughan Bell, over at Mind Hacks, for this.

  • We Were Here

    A tip of the hat to Alistair Appleton over at Do Bhuddists Watch Telly for his post on the Documentary We Were Here by David Weissman. The film tells the history of the early 1980s when the AIDS epidemic grew and wiped out thousands. As Alistair says:

    More than 15,000 people died at the height of the epidemic in just the [San Francisco] Bay Area. All in the space of four or five years.

    Unlike the films And The Band Played On (which uses actors to portray the actual events of the time), or Longtime Companion (which is a fictionalised account of the rise of AIDS), We Were Here has real people telling their stories of that time and place (San Francisco).

    WE WERE HERE (trailer) from David Weissman on Vimeo.

    Martin and I are of the generation who faced the horror full on, and lost friends to AIDS. We will certainly watch the film (it’s being released next month on DVD) and remember. I also hope that some of the younger generation of gays will watch the film and get a sense of what we went through. The story is not all doom and gloom, however; as the plot summary on IMDB says:

    ‘We Were Here’ is the first film to take a deep and reflective look back at the arrival and impact of AIDS in San Francisco, and how the City’s inhabitants dealt with that unprecedented calamity. It explores what was not so easy to discern in the midst of it all – the parallel histories of suffering and loss, and of community coalescence and empowerment. Though this is a San Francisco based story, the issues it addresses extend not only beyond San Francisco but also beyond AIDS itself. ‘We Were Here’ speaks to our societal relationship to death and illness, our capacity as individuals to rise to the occasion, and the importance of community in addressing unimaginable crises.

  • Reflections on Illness, Addiction and Mortality

    Read Will Self’s article. It is brilliant. Nothing more needs to be said.

  • “I Have No Mouth and I Must Scream”

    That’s the title of a short story by Harlan Ellison, but it is also a reference given by Roger Ebert in his stunning presentation at TED last month.

    Ebert is a brilliant critic of film, but cancer has removed his jaw and his ability to speak. His presentation at TED is an example that being born into this particular “box of time and space” where PLATO, HAL 9000 and the DEC Rainbow all occurred, together with advances in medical science, have ensured that Ebert’s voice, in all its manifestations, can continue to be heard. Wonderful.

  • The Survivor

    Good heavens, Jonathan Grimshaw is still alive and kicking. He contracted HIV way back in 1984, so must be one of the longest-surviving people with HIV in the UK.

    While I have never actually met him, for a time he was working closely with my best friend, who was a psychologist and epidemiologist working in the Home Office. Len was instrumental in the development of policy on HIV/AIDS in the UK’s prisons. By his account, Grimshaw was a charming and intelligent man, doing a lot of good work. So it’s good to hear that he’s still with us.

  • It’s Not Your Body

    Eric MacDonald writes a good deal of sense in his blog Choice in Dying. Today’s entry is a case in point where he takes to task the trite observations from a hospice chaplain and puts the fundamental point that it’s simply not humane or justified to hold that Religion believes itself in the possession of absolute knowledge, applicable to all people, always, and everywhere.

    I have a friend who is currently dying. He has good days and bad days. I sincerely believe that it is his decision, and his decision alone, as to when he judges that his quality of life has passed the point of no return – not down to some religious meddler in other people’s lives, who would prolong his agony for the sake of some fictitious god and their own self-righteousness.

  • World AIDS Day

    Today is World AIDS Day. One of those occasions that you wish you didn’t have to have, but which is important to remember and do something about. 

    At  a personal level, it’s a chance for me to recall some lost friends: Kerry, Lance, Eric, Humphrey, Peter, John, Kingsley, Graham, and Neil. I’m sorry that you’re not around with the rest of us today.

    Ach, another year. Meanwhile, I have to ask myself WTF are the younger generation doing ignoring the lessons of history?

  • Statistics Made Fun

    Nobody does this better than Hans Rosling. Here’s a particularly nice example:

    (hat tip to Pharyngula)

  • RIP, Claire

    Damn, Claire Rayner has died. A wonderful woman. While I never had the privilege to know her personally, I spoke with her many years ago on one of her phone-ins. She was forthright, sensible, and I would have trusted her to the ends of the earth. She will be missed.

    And here’s another tribute to her from Roy Greenslade. I did enjoy the quote that he gave of her commenting on a far more powerful, yet by comparison an immeasurably poorer example of a human being than she was:

    “I have no language with which to adequately describe Joseph Alois Ratzinger, AKA the Pope. In all my years as a campaigner I have never felt such animus against any individual as I do against this creature. His views are so disgusting, so repellent and so hugely damaging to the rest of us, that the only thing to do is to get rid of him.”

    It also took this piece from Greenslade to cause some pieces to finally fall together in my increasingly addled brain. I simply hadn’t realised that Jay Rayner was the son of Claire. I leave you with his tweet:

    My dear old mum, Claire Rayner, died yesterday aged 79. I, like so many others, will miss her terribly.

    Amen.

  • Carpe Diem

    We had a telephone call last night that underlined the importance of carpe diem – seizing the day and living life while you can. The daughter of a friend of ours rang to give us the news that Maaike had died of a heart attack while on holiday visiting relatives in Portugal. She was only 52. She and her family visited us just over five weeks ago. She was full of life then, and now she’s gone. She is missed.

  • Hitchens: No Deathbed Conversion

    And in yet another post on Christopher Hitchens, here’s an interview with him. The lion still has a roar, but not for much longer, I fear. He is deep into the land of malady. Nevertheless, it’s good to hear direct from his lips that any future rumours of deathbed conversions should be treated with the contempt that they deserve.

    Hat tip to Jerry Coyne, over at Why Evolution Is True.

  • How Do Atheists Face Death?

    Yesterday, I mentioned the article by Christopher Hitchens about his entry into the land of malady. It’s an article that has been picked up by many people in the blogosphere, including PZ Myers, over at Pharyngula. But what caught my eye was the comment made by “Cuttlefish” on that entry concerning how atheists face death. It’s a short, but beautifully written, statement about the subject. A taste, but do go and read it in its entirety:

    How does an atheist face death? By facing it, not by denying or diminishing it. Not by turning it into a transition to some other reality. Not by making up a story to make themselves feel better. It hurts because it’s real, it’s permanent, it’s the end. It should hurt.

    And now he lives on only in our memory, and in our changed lives. That is his legacy; that is the good he continues to do. He’s not looking down and guiding; he doesn’t wait for us to join him. If we love him, we can do our best to fight for his causes, to continue his work.

    In the real world. The only one we have.

    Amen.

  • Engaging the Enemy

    Christopher Hitchens writes like an angel as he describes his entry into the land of malady. Sobering stuff.

  • The Baker’s Wife

    We had a bit of a shock last week. On Thursday evening, we saw that there were two ambulances with flashing lights at Bennie the baker on the corner. The following morning we learned that his wife, Ineke, had collapsed. She had been rushed to hospital in one of the ambulances, but they failed to resuscitate her, and she died. She was only two years older than me, and she had seemed in perfect health to everyone.

    Last Saturday evening, Martin joined other neighbours at Bennie’s to plan for the funeral. It’s tradition here that at the funeral, the coffin is carried in by representatives of the buurt (neighbourhood). As a result, I was to be one of the six coffin-bearers at her funeral. I was honoured to be able to do so.

    Last night people were able to offer their condolences to the family and make their farewells to Ineke at Bennie’s, and two hundred and fifty people turned up. The bakery is something of an institution around these parts. It was begun in the 1930s by Bennie’s father, and Bennie and Ineke carried on the tradition. Bennie baked and Ineke served in the shop. She was always ready with a smile and a laugh, and she loved to gossip. In fact, she was the epicentre of all the gossip that went on around here. The best way to spread news without any effort was to mention it to Ineke.

    Today was the funeral. Bennie and the family did her proud. Her coffin was borne to the church in a traditional hearse drawn by two jet-black Friesian horses; beautiful animals with black plumes on their heads. Three representatives of the neighbourhood, and we six coffin-bearers, in dark suits with black capes, walked in front of the hearse for part of the 3 kilometre route to the church, where we transferred the coffin into the church. The church was packed, once again reflecting how much she was known and liked, and how much of a shock her sudden death has been. After the service, we carried the coffin back out to the hearse and set off to the graveyard, where we transferred it to its final resting place.

    As I say, it was an honour to be chosen as one of the six bearers. But I wish that it hadn’t taken the death of Ineke to bring it about. She will be missed.

  • Dying in Increments

    A phrase from a piece in Esquire about Roger Ebert, the film critic. Once you get past that amazing, arresting portrait image, the picture it paints of Ebert is wonderful. Worth reading.

  • Euthanasia Tribunals

    Last night I watched Sir Terry Pratchett deliver this year’s Richard Dimbleby Lecture – or rather, I watched his friend, Tony Robinson, deliver it by reading his words, while Pratchett looked on. The reason was that Pratchett has Alzheimer’s disease, and he can no longer rely on himself to be able to give a lecture.
     
    He used the occasion to make the case for those with incurable illnesses to be able to choose the time of their own death. It was a speech that was humourous, passionate, and compassionate. An edited extract of the speech is here. I agree with every word.

  • Still Life

    There’s a terrific article, and moving interview, about the historian Tony Judt in today’s Guardian. Go and read the article and, in particular, watch the interview. Sometimes I think we take for granted the amazing state of simply being in good health.