Lynn Gilderdale and the legend of Joe Bonham

Picture of Dalton Trumbo and his wife CleoBack when I was at boarding school, we all heard the legend of the man who was blown up in the trenches (in World War I) and lost all four limbs and most of his face, as a result of which he became unable to see, hear, speak or eat; he was, as it was described, “a brain alive” although he was supposedly able to tap out messages in Morse Code with his head. I first heard it when my friend and I were sat in the sleep-in staff member’s room, who was making some attempt to console my “homesickness” (or rather, upset at being there) by saying that “it could be worse; I could be like that guy who got blown up in the trenches, etc”. The heavy metal band Metallica did a song based on the story called One, and I remember a boy in my class bringing it into English class and playing it to the middle-aged female teacher (and the rest of us). The song starts off melodic, but as might be expected, it turns into a thrashy noise. The song ends with that suddenly cutting out, at which point the teacher said, “oh thank God that’s over!”.

One was based on a novel titled Johnny’s Got his Gun, which was an anti-war novel in the inter-war tradition, published rather inconveniently just as another war was breaking out, in 1939. Trumbo opposed American involvement in World War II until the breakdown of the Nazi-Soviet pact, at which point he suspended publication of the book until the end of the war. According to the website of a recent film based on the book, Trumbo served as a war correspondent with the US Army Air Forces; later on, he refused to testify at the House Un-American Activities Committee (HUAC) and was jailed, moving to Mexico after serving his sentence. He later wrote the screenplay for Spartacus and the film of Leon Uris’s Exodus (both 1960). In 1971, he directed the film of Johnny Got His Gun, on which the video of Metallica’s song is based. He died in 1976.

I’ve never read Trumbo’s book; maybe my Dad (who reads a lot of war literature) has a copy somewhere. Trumbo’s novel is fiction, but it’s based on a story he read about the then Prince of Wales visiting a young veteran in a hospital in Canada, and the man had been injured similarly to the lead character in Johnny’s Got His Gun, Joe Bonham. Bonham first tries to kill himself by suffocation, but is prevented by his tracheotomy; he manages to communicate with his doctors by hitting his head on his pillow in Morse Code. He asks to be put in a glass box and transported around the country to show people the horrors of war, but his request is refused. Trumbo projects his pacifist views onto his fictional character; none of this appears in the Metallica song, which reflects on the horrific situation the man finds himself in at the beginning. The chorus runs “Hold my breath as I wish for death / Oh please God, wake me”.

Picture of Lynn Gilderdale, ME suffererThe story came to mind thinking about Lynn Gilderdale, the second anniversary of whose death it is today (4th December). Like Joe Bonham, she lived an extremely restricted life, bedridden and unable to eat or drink normally or speak due to severe ME (she could see and hear, but had to live in a darkened, quiet environment as light and sound exacerbated her already very severe pain; others require total silence and darkness). Instead of Morse code, she used a sign language she and her mother had developed; towards the end, she too expressed a desperate wish to die (Bonham was even less able to act on it, as he had lost his arms). Both situations are beyond the comprehension of most people, and a fair number would say, if the thought of being like that were suggested to them, that they would rather die. Lynn lived like that for over 16 years. Joe Bonham was a fictional character; I don’t know how long the Canadian who provided the inspiration for his character lingered in that state. Perhaps, somewhere, a care worker in a girls’ boarding school is telling a couple of homesick pupils that life could be worse; they could be like the girl who lay bedridden in continual agony and sickness in a dark room for more than 16 years.

Last week I had a discussion with two other women who have severe ME, after a comment on media coverage of her case and why the media concentrated on Lynn’s suicide and her mother’s court case rather than her illness. I suggested that surely a story about a young girl living in Lynn’s condition for years was “well, a story”. One of the women responded, “A story certainly but not one people want to hear about. Only ‘happy endings’ allowed for illness stories in the media”. So, what has changed that Joe Bonham’s story could have produced — besides the original novel — a film, a play, another film based on the play, and even a heavy metal song, while the media in this country, after being presented with Lynn’s terrible story, concentrated on her death in almost all the coverage of it after the end of the trial, rather than on her life and how her illness affected it, particularly during the most recent ME Awareness Week. The media have also been more or less silent on some aspects of the story; they hardly mentioned the traumatic elements of Lynn’s illness, such the abusive treatment she received early on, and they have remained conspicuously silent on the XMRV discovery. The virus may or may not be the cause of ME (or some cases of ME) and there are other very strong contenders, but that is no reason to not even mention it. One man with ME, who was interviewed on British TV, was reportedly told not to even mention the name of the virus, despite the fact that it is widely being talked about on the Internet and in the American media.

The story has been presented as an emotive example of the case for assisted suicide, rather than an opportunity to expose the terrible toll of abuse of ME sufferers in the very recent past and prevent further tragedies. There is a dire shortage of literature on the subject, and much of what is there confuses ME with more general “chronic fatigue”, a symptom of a lot of other illnesses but which many ME sufferers say their condition does not even vaguely resemble. When a story about medical research is reported (as with the recent Dundee study), it is presented yet again as proof that the illness is physical, something which was obvious when it started appearing in large numbers of people in the 1980s.

Perhaps the public does not need to be educated about ME being real — I think the public knows this. It is in the medical profession where the resistance to accepting it as such, and the obsession with psychosomatic theories, remain. What people need is the means to resist inappropriate treatment suggestions and to defend their loved ones’ welfare when they become unable to do it themselves. This is why there needs to be public awareness of what ME can do to people which could be raised by more factual or dramatic coverage of the Gilderdale case or any other.

This anniversary has been yet another lost opportunity, one that people I know in the ME community would have liked to see used to raise awareness. There has not been a single story. Apparently one journalist was very keen, but the editor wasn’t. Maybe next year.

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