MARIE: As Jon said, I was away for a good week, and a few days after I came back Jon went off to visit old friends and colleagues in England. He always leaves lots of spoor behind, so it took no great deductive powers to find that he had watched Awakenings again (the film based on the documentary based on the book by Oliver Sacks where he tells the stories of his patients who had an ultra-severe form of Parkinsonism brought on by the late effects of a particular type of encephalitis). It’s a very fine film, as we both thought when we first saw it, independently of each other and many years before Jon had any inkling it would gain a personal relevance. So thus prompted, I watched it too while Jon was away.
There is an element of self-pitying catharsis in it now. Because the film is a tear-jerker about people who have essentially the same symptoms as Jon, though orders of magnitude worse and at a time when effective medication was in its infancy, it is like seeing our little everyday struggles blown up to a scale where the dynamics and mechanics become crystal-clear. And that, of course, means we can see shades of ourselves in the situation and have a good old cry – ostensibly over the film, but really over ourselves. Which is nice, in a slightly twisted sort of way.
Having seen the film, which focuses on one particular patient, Leonard L., I also felt like dipping back into the original book to re-read his case history there. The film character is a simplification and generalization of the case history – and fair enough, film usually both adds to and detracts from the material on which it is based. The real story of Leonard L. is actually far more moving than the film, which presents him and the other patients as completely frozen physically and essentially catatonic before they are administered L-dopa. In reality, Leonard was highly intelligent, a Harvard Ph.D. student before his admission to hospital, and a voracious reader and book reviewer during his decades in hospital – so long as someone was there to do what his prison of body could not: turn the pages for him. Maybe it was simply one step too far to expect mass cinema audiences to enjoy a film about a man trapped alive in an immovable body? Better and easier to pretend that he was unaware.
But what struck me in particular this time round was the portrayal (identical in book and film) of Leonard’s relationship with his mother who cared for him throughout his illness, spending every single day in the hospital with him. In his pre-dopa state, he is physically like a huge, docile baby. His mother spoon-feeds him, dresses him, entertains him (i.e. turns his pages, I guess), even changes his nappies. She looks after him and speaks for him. It is, simultaneously, complete devotion and utter captivity. His feelings are apparently equally torn, as Sacks says he sees in Leonard alternating expressions of pleasure and resentment.
But the thing, which may seem surprising but is probably almost inevitable, is that his mother (and many of the other patients’ relatives, too) is deeply unhappy with the initial improvement brought about by L-dopa. In many cases (in reality as in the film) the first reaction of patients to L-dopa is almost miraculous – from frozen statues to almost normal function (though this does not last beyond some weeks or months before very severe side effects set in and force the termination of treatment). But where does this sudden improvement and independence leave the devoted carer whose life and purpose revolves around the sick bed? Suddenly you are adrift, surplus to requirements, perhaps mostly a reminder of bad times. In fact, I recently read a (Danish) self-help book about how to make your marriage survive illness, where the authors discussed how couples often split up because they cannot handle the cure – the partner who was ill tends to get euphoric and self-centered, while the partner who was caring gets depressed and feels abandoned.
In a very small way, we experienced a bit of the same when Jon got better after he stopped the Sifrol that was giving him such hideous side effects (as described in posts mainly from August to October 2008). I found it hard to accept that he really was permanently better, that he didn’t need my help any longer and actively didn’t want me to give him his medication or even necessarily know exactly what he was taking. I found it surprisingly difficult to relinquish responsibility, especially over medication, and he found it quite impossible to live with me in control of it. He felt smothered, I felt rejected. I pleaded, he stone-walled. Eventually we saw a couples therapist and got over it, but not easily – and that was after just a few months of impairment. I have only the tiniest inkling of what it must have been like for Leonard and his mother. Enough, though, to require several tissues to mop up.
There is an element of self-pitying catharsis in it now. Because the film is a tear-jerker about people who have essentially the same symptoms as Jon, though orders of magnitude worse and at a time when effective medication was in its infancy, it is like seeing our little everyday struggles blown up to a scale where the dynamics and mechanics become crystal-clear. And that, of course, means we can see shades of ourselves in the situation and have a good old cry – ostensibly over the film, but really over ourselves. Which is nice, in a slightly twisted sort of way.
Having seen the film, which focuses on one particular patient, Leonard L., I also felt like dipping back into the original book to re-read his case history there. The film character is a simplification and generalization of the case history – and fair enough, film usually both adds to and detracts from the material on which it is based. The real story of Leonard L. is actually far more moving than the film, which presents him and the other patients as completely frozen physically and essentially catatonic before they are administered L-dopa. In reality, Leonard was highly intelligent, a Harvard Ph.D. student before his admission to hospital, and a voracious reader and book reviewer during his decades in hospital – so long as someone was there to do what his prison of body could not: turn the pages for him. Maybe it was simply one step too far to expect mass cinema audiences to enjoy a film about a man trapped alive in an immovable body? Better and easier to pretend that he was unaware.
But what struck me in particular this time round was the portrayal (identical in book and film) of Leonard’s relationship with his mother who cared for him throughout his illness, spending every single day in the hospital with him. In his pre-dopa state, he is physically like a huge, docile baby. His mother spoon-feeds him, dresses him, entertains him (i.e. turns his pages, I guess), even changes his nappies. She looks after him and speaks for him. It is, simultaneously, complete devotion and utter captivity. His feelings are apparently equally torn, as Sacks says he sees in Leonard alternating expressions of pleasure and resentment.
But the thing, which may seem surprising but is probably almost inevitable, is that his mother (and many of the other patients’ relatives, too) is deeply unhappy with the initial improvement brought about by L-dopa. In many cases (in reality as in the film) the first reaction of patients to L-dopa is almost miraculous – from frozen statues to almost normal function (though this does not last beyond some weeks or months before very severe side effects set in and force the termination of treatment). But where does this sudden improvement and independence leave the devoted carer whose life and purpose revolves around the sick bed? Suddenly you are adrift, surplus to requirements, perhaps mostly a reminder of bad times. In fact, I recently read a (Danish) self-help book about how to make your marriage survive illness, where the authors discussed how couples often split up because they cannot handle the cure – the partner who was ill tends to get euphoric and self-centered, while the partner who was caring gets depressed and feels abandoned.
In a very small way, we experienced a bit of the same when Jon got better after he stopped the Sifrol that was giving him such hideous side effects (as described in posts mainly from August to October 2008). I found it hard to accept that he really was permanently better, that he didn’t need my help any longer and actively didn’t want me to give him his medication or even necessarily know exactly what he was taking. I found it surprisingly difficult to relinquish responsibility, especially over medication, and he found it quite impossible to live with me in control of it. He felt smothered, I felt rejected. I pleaded, he stone-walled. Eventually we saw a couples therapist and got over it, but not easily – and that was after just a few months of impairment. I have only the tiniest inkling of what it must have been like for Leonard and his mother. Enough, though, to require several tissues to mop up.
