JENNI'S OFF-GRID NEWSLETTER, NO. 14 (JULY, 2016)
July 28, 2016Surreptitious Serendipity
Thirty years ago I surreptiously took two photos of Henry Molaison, the world’s most famous and studied amnesiac. I was, at the time, a postdoctoral research fellow at MIT in Cambridge, Boston, and because my mentor, Professor Suzanne Corkin, headed the 50 year-long research program on “Patient HM” as he was known until his death, I was one of the lucky few who got to meet him, and ask him the same questions he was asked hundreds of times—“Do you know who the President of the United States is?”— and get an answer like “Ike” or sometimes a president slightly more recent than that (but not recent enough). Because HM was vulnerable to exploitation if his name or where he lived (in a nursing home in Hartford, not far from Boston) was known, his identity was an amazingly well-guarded secret, and those of us who worked with him (a euphemism for “tested him”) or cared for him were sworn to secrecy. I knew I shouldn’t have snapped those photos, but there we were, chatting away for hours, and why not? They were just for me so I wouldn’t forget his smiley face. Years later when I was at Auckland University I made the mistake of telling Suzanne I had those photos and she was horrified and told me to send her all the prints and negatives for her to destroy. So I did, but of course I kept one copy of each print (duh!). After HM died at age 82 in December, 2008, and his identity was revealed to the world in the many obituaries written about him (NYT, Guardian, Lancet and so on). Sue started to write her wonderful biography of HM, and lo and behold she asked me if by any chance I had kept a copy of the photos and could she use one in her book! Sue gave me permission to publish my HM photo in my own new book, “Trouble In Mind” which in fact was published before hers (but also after HM’s death). After that it “broke out” —the photo, not my book—and I am forever getting requests for it.
Next month a new and controversial book titled Patient H.M.: A Story of Memory, Madness, and Family Secrets will be published about HM and about the neurosurgeon, William Beecher Scoville, who performed his operation—the operation that stole HM’s memory and launched him into his new career as the most studied patient in history. Scoville was, according to a rumour that had long been spread, a cowboy neurosurgeon, and this new book, which is written by Luke Dittrich who just happens to be Scoville’s grandson and also an award winning journalist, turns rumour to fact. Dittrich’s book is superb, although I have issues with parts of it. His descriptions of the gruesome and almost unbelievable horrors of psychiatric treatments in the first half of the 20th century that his grandfather was centrally involved in are vivid and make one want to go have a soothing, cleansing shower. The later HM part of the book (HM was not a psychiatric patient but a very normal and intelligent man except for his epilepsy, the reason for his unethical brain operation) is well told and Dittrich’s descriptions and commentary on the sometimes questionable ethics of scientific research in the big universities like MIT (and everywhere else) thought-provoking. I have a cameo role in Dittrich’s book, chatting away with HM and surreptiously taking those photos (Dittrich interviewed me at some length, and mostly got stuff right).
Dittrich’s book comes out August 8th and I predict it will be a front runner for a Pulitzer Prize (but wot would I know?). It is going to be a BIG event, and on 7th August the New York Times Magazine’s cover article is by Dittrich and features me apparently (in a small way I’m sure). I know this because the NYT fact checker contacted me and gave me an oral exam about the entire history of memory research and the 12000+ neuropsychological findings that had been made over the past 60 years (as published in the 12000 articles and chapters on HM), and all without my doing not a lick of study on these topics for thirty years or so. Luckily fact checker Michelle (who was in fact delightful) didn’t know enough to fail me.
And that naughty HM photo will be in the article as well; who knows, perhaps on the front page. (NYT fact checker:“Did you really take those photos? How do we know that is really HM and not your uncle?”). The photos are also going to feature on a “PBS Newsroom” interview with Dittrich. I’m not sure what the moral of this story is, other than it pays not to always obey silly rules. Imagine if, apart from the few photos that exist of HM as a child and young man and one very blurred image of him at 80 in the rest home, we had no photos of this incredible man who gave 50 years of his life teaching us about memory?
To give you a flavour of Dittrich’s book, I have featured it as my review this month (I had an advance copy). For those of you who are not psychologists and don’t know too much about HM, the man who lived in the moment, here is a link to a post that summarises the HM story, I wrote a few years ago. https://www.psychologytoday.com/blog/trouble-in-mind/201201/hm-the-man-no-memory
My Writing “News”
1. I’m in two sessions at the Cairns Tropical Writers’ Festival 12th-14th August; It looks like a great program. Magda Szubanski, who won the Australian Book of the Year award, 2016, is the main guest speaker.
2. In mid-August there will be a promotion of my novel e-book, discounted for a limited time, and I’ll send a “special edition” newsletter out the day before with a tweet and FB post that I hope some of you might share. If you haven’t got the book and read e-books, here will be your chance to get it for half the price of a cup of coffee!
3. An Allen & Unwin senior editor loved my novel, contacted me, and is now working with me on my new novel! If I get it right and she loves it she said she may make me an offer when I’ve finished about half of it. Woo Hoo! Allen & Unwin is a great publisher and won the Australian Publisher of the Year Award again in 2016 both in Australia and NZ.
4. Thank you those of you who have posted reviews of A Drop in the Ocean, and I am always grateful for a review should you feel inclined to post one! A sentence or two or even just an honest rating if you enjoyed it, is all you need to do. Amazon promotes books with lots of reviews, and Goodreads readers love reviews. You can post the same review on multiple sites!
On Amazon.com (you can review anonymously, with a pseudonym, or your own name): Go to this link (http://www.amazon.com/Drop-Ocean-Novel-Jenni-Ogden/dp/1631520261?ie=UTF8&fpl=fresh&redirect=true&ref_=s9_simh_gw_g14_i1_r ), click on ‘customer reviews’ by the title. This will take you to the beginning of the customer reviews. Click on “Write a customer review.” Rate, write and save!
Same for Amazon.co.uk Here is their link (https://www.amazon.co.uk/Drop-Ocean-Jenni-Ogden/dp/1631520261/ref=sr_1_1?s=books&ie=UTF8&qid=1464322868&sr=1-1&keywords=Jenni+Ogden). It would be great if you would post your review on both Amazon sites, as they are separate sites in terms of their secret promotion algorithms etc .
Goodreads. You need to be a member to review here, but go on, join up! They don’t spam you and it is a great book site. Go to https://www.goodreads.com/book/show/27037952-a-drop-in-the-ocean and under image of book cover click “Read” and a review form pops up. Ignore all the bits about what date you started, etc and just rate the book and write you review, click “save” and you’re done.
Patient H.M.: A Story of Memory, Madness, and Family Secrets
by Luke Dittrich
Luke Dittrich, the author, and a prize-winning journalist, has written a fascinating, well-researched, and brave book about patient H.M. and Dittrich’s own grandfather, William Beecher Scoville, the neurosurgeon who performed the bilateral hippocampectomy that resulted in H.M’s dramatic and global amnesia, and precipitated him into his future as the most famous and studied medical case of all time. Of course, H.M. was never aware of his fame, although his comments sometimes hinted that he had a fleeting knowledge of his role as a experimental participant in thousands of memory experiments, mostly carried out at MIT in Cambridge, Boston. Dittrich delves into the ethics of psychological research (and indeed the much more controversial ‘experimental’ neurosurgical procedure performed by his grandfather), as well as the historic memory findings of the small number of researchers allowed access to H.M. The neurosurgical procedure, even viewed through a historical lens, was probably unethical, but the 50 + years of research following the discovery of H.M.’s amnesia, was not. Consent , as far as this was possible given H.M.’s amnesia, was sought, as were psychiatrist’s assessments of H.M.’s willingness to participate. Basically, once H.M. became amnesic, if he had not become an experimental participant he would probably have had a much more terrible life, forgotten and possibly neglected or abused in a back ward of a nursing home or a psychiatric institution somewhere. As Dittrich implies, he could have been treated more generously by MIT, especially in terms of money for his everyday needs, but anyone who knew H.M. would realise that perhaps his everyday needs were catered for in spite of these being very modest. For a man with no memory it is difficult to conceive of what else to supply to improve his existence. Again, for those who knew him, he did seem, almost always, in the moment, content. The occasional displays of brief annoyance are somewhat over-emphasised, and in the short but intense periods I worked with him, I certainly never saw one. It is hard to be angry when one can’t remember what one is being angry about.
Would a patient like H.M. be treated differently today? I suspect not, except in the sense of a more careful and thoughtful consideration of who should make decisions regarding his treatment, both as an experimental participant and regarding his medical treatment. There is no evidence that he had anything other than the best medical treatment in any case, but perhaps these decisions today would be overseen by an independent ethical committee, rather than the scientists and medical practitioners associated with MIT and one good friend of the family who became his trustee. From the testimony of many patients who are unambiguously able to give fully informed consent to participating in all manner of experiments, medical or psychological, knowing full well that the results will not benefit them, they willingly participate because they hope the experiment will benefit others, and often it also prevents boredom, or at least takes their minds off their own problems for a while. There is every reason to believe this is how H.M. felt as well, if only in the moment each time he was asked. This is certainly something he expressed. In today’s world there would of course be a much more formal and probably repeated written consent process to go through, but in the 1950s and 60s, informed consent was very much up to individual researchers, and medical ethics and patient rights not well understood. In H.M.’s case, one might even speculate that for someone else, or some trust, to have made a decision on his behalf that he should NOT contribute in this way could also have been seen as unethical. And of course, participants in these experiments tend to get the very best medical care, simply because they are part of a carefully controlled and well-funded study.
So the tragedy of H.M. was that he had intractable epilepsy, and that he was a guinea pig in a neurosurgical procedure that should never have been conducted, even given the knowledge at the time. Removing both hippocampi rather than just one (as is done today) is a neurosurgical decision difficult to comprehend, and suggests that Scoville was treating H.M. in a way that was unethical and disrespectful. The triumph of H.M. was the research that occurred later; its immense importance to neurosciences and thousands of patients since at the very least made the terrible sacrifice of his memory and independence less horrifying. This is how I believe the H.M. I knew would want to be remembered, not as a victim of a cowboy neurosurgeon. To give Scoville his due, he did campaign widely after he realised what damage his surgery had done, to ensure that this operation would never be done again.
The protection of H.M. throughout his research life is given considerable space in the book, and probably to the reader this protection seems extreme, and more for the benefit of the scientists than H.M. However, it is always considered ethical to ensure that experimental participants remain anonymous (and if they do not, they must give fully informed consent to this). So H.M. had to be protected during his life. It is amazing that, in spite of his many caregivers and 100 researchers knowing who he was and where he lived, no-one, including Dittrich, who tried very hard to track him down, ever found him! Professor Suzanne Corkin perhaps should be commended rather than blamed for this incredible feat. As H.M.’s importance to neuroscience grew, so did the likelihood that he would be exploited and tested constantly (rather than two or three periods of a few weeks each year on his visits to MIT) if his identity had been known and his access to researchers poorly monitored.
The final chapter in the H.M. story, at least as told in this book, concerns the acrimonious disagreements about the “ownership” of his brain following the sectioning of it. It is a story I hadn’t heard before, and it certainly raises questions about the ethics of science. However, Dittrich’s book presents only one side in detail, that of the outstanding neuroanatomist who sectioned the brain. It wasn’t for lack of effort on Dittrich’s part; he persistently tried to also hear and report the side of the scientists and administrators at MIT and MGH. But scientists and universities are wary of journalists, and protecting their own policies, and this is not especially surprising. Of course this is a brain that was given by H.M. (or his ‘trustee’ —whether or not we think this trustee was properly selected for the job and had H.M.’s best interests at heart) to science, and where it resides, or whether it is scattered between different institutions and for whose benefit, is a difficult issue. It perhaps will never be an issue the public will be able to debate as it has been kept close to the universities involved. Let us hope that this squabble between scientists does not detract from the amazing science they have all done, and future discoveries that continue to rely on the thousands of peer-reviewed scientific articles already published about H.M’s working brain, and the new findings still hidden in that hard-working sectioned and only partly studied dead brain. Only in that way can H.M.’s incredible and willing contribution (if his own comments can be believed) be maximised and H.M.'s sacrifice be respected.
Article of Possible Interest
My most recent Psychology Today post https://www.psychologytoday.com/blog/trouble-in-mind/201607/behave is, believe it or not, once again about books, this time a fictional biography of John Watson, the father of radical behaviourism and his lover and then wife (after he was sacked from the university) Rosalie Rayner.
The next newsletter might be late or even non-existent as we will be in New Orleans and busy with Blues instead of books, and possibly with doubtful wireless connectivity. Then Mexico for three weeks and back to the US until 8th November. But a few newsletters will surely appear before then. Once again, thanks for your support, and carry on conning some more mates or enemies into subscribing to my e-newsletter! http://www.jenniogden.com/newsletter.htm
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