If acceptance is hard to describe and recognise after one-off life-changers like spinal cord injury or stroke, what does it look like after diagnosis with progressive diseases like Multiple Sclerosis, or MND, or Parkinson’s Disease?
The shifting currents of acceptance and denial often start before a neurological diagnosis. When do odd symptoms like pins and needles become part of a pattern which requires investigation, and how long do you ignore them? When confronted by resting tremor in his little finger Michael J Fox initially refused to acknowledge its importance. Christian Donlan’s first symptoms of MS were a clumsy missing of door handles and cashpoint keypads. “For at least a year, I failed to spot a silent disaster unfolding”.
MS is an unpredictable condition, which manifests itself in different ways in those who have it, and also at different times in one individual. So how do you accept what is hard to define, and whose consequences are impossible to predict or quantify? The Unmapped Mind is Christian Donlan’s fascinating account of wading through the shifting sands between “the fog of bewilderment” and “the toxic Zen of total comprehension”, all the more difficult because of some of the cognitive effects of the disease, which sometimes left him in “a literal nothingness… chasing a little pool of nothingness around inside me”. With MS there is always going to be uncertainty, but Donlan knows that during his struggle to see what his diagnosis might mean, “my complacency died [and] that sense of invulnerability that I must have had before all this began”. Is this acceptance? Or is it his sense that every moment is valuable. “MS is a disease of moments, and it says, in its swiping carelessness, that the moments matter.”
Acceptance will be different for everyone. Some people take a remarkably early proactive attitude to a life with disability. Katherine Cuthbert was already engaged in a self-build house-construction exercise when she received her MS diagnosis, and disability planning seems to have started very early – even if there were periods of low mood. Michael J Fox spent several years in alcoholic denial before he calmed down, and started to plan possible futures with his wife. MND presents a much faster timescale, and perhaps this was what gave Tony Judt his clear-eyed view of the gradual progressive losses he was experiencing.
Exploring the stories of people with long-term conditions allows us to sense the ways people adapt to an unanticipated interruption in their self-predicted life narrative. A doctor told Christian Donlan that “with disease it is often a patient’s ‘story’ that is truly broken”. It follows perhaps that those who have a very fixed idea of what their life should be will find its destruction difficult. For Holly Gerlach the disruption of Guillain-Barré syndrome was not part of the fairy-tale, and a lot of reconstruction was required – including massive energy for physical rehabilitation. Others are more flexible, and the changes may be easier.
The challenge for clinicians is to identify what our clients require at any given moment. How do clinicians help in the process, other than to listen, and to identify important wells of kind emotional support?