Friday, April 8, 2011

Updates on, Lupus and Body Donation
     As we requested, Media One of Utah has changed its obituary policy, taking down the pay wall on all obituaries, permanently. There will be no charge for viewing older obits, and those forthcoming will remain free perpetually, instead of requiring a fee after 30 days.
    Regarding the class-action lawsuit on the abuses inherent in's user agreement.......
-- which will be defended by the Chicago law firm Mandell, Menkes -- we had a conference call yesterday with our lawyer and several potential named plaintiffs. Our lawyer has completed a rough draft of the suit and he is getting input from former colleagues and a local law professor. He still needs to study the class-action aspect, to determine if we can act legally as a "class" and on what basis representatives of the class should be selected. The draft of the suit is thrilling to me. It reminds me of why I wanted for many years to be a lawyer. It is forceful and convincing. We will keep you informed.
   Thank you for your emails and questions about the Lupus post. We have received attention from many parts of the world, thanks to a link in The Lupus Magazine  -- an excellent, Australia-based publication -- and it is rewarding to play some small role in this very caring community. This baffling disease is causing so much anguish, I am glad a network has formed to share information and provide support.
   I am grateful to be able to report that the remission in my rash remains virtually complete, and I still can't explain it except for the higher-quality probiotic I began taking 36 hours before it simply disappeared. (It had been active for nearly nine months). I expect I will have many flares again (or not?) but for the time being, I don't look like a Tasmanian Devil.
   The bad news for me is that I just had more lab work done, and my anti-nuclear antibodies and double-strand DNA numbers continue to indicate that I have an autoimmune disease, probably Lupus. I have so far elected not to take the medicine, although I realize that I am endangering my internal organs. My tentative plan is simply to continue living a very healthy lifestyle -- beautiful vegan food and lots of exercise -- and see what happens. I really find the medical establishment basically useless and compromising. I feel better about returning to my "What Would Cleopatra Do?" approach and letting nature take its course.
   Thank you for the responses to my account of my father's donation of his body to the medical school and my extreme anguish about it.
    I have realized in the ensuing weeks that my post lacked objectivity. I am not obliged to be objective as a blogger -- I can be as wild and crazy as I please -- but I do feel that I wasn't fair to the body donor program, and I would like to rectify that, for the benefit of the program as well as for those who are considering donation.
    As I wrote, there have been questions raised about how body donation affects the intensity and duration of loved ones' grief. Unfortunately, there appears to have been no follow-up. 
    But it is evident to those who run these programs that many if not most families feel a great sense of pride in the contribution their loved one has made to science, and they do not express grief or distress over the donation. Most institutions who have donor programs, including the University of Utah, conduct annual memorial services to honor the donors and their families, and I am told that there is a very powerful outpouring of positive emotion at these observances. 
    Although there is a robust debate about whether it is feasible -- or even desirable or necessary -- for cadavers to continue to be used in medical education, it seems to me that they are very valuable. Exciting new technologies offer some advantages over the use of cadavers in teaching anatomy, but my inexpert sense is that to explore and experience a real body is priceless. Most students are immensely appreciative.
    So in spite of my ongoing nightmare about my own father, I wish these programs the best, and I salute those who administer them for their decency and respect.