Acceptance is a slippery word. In the stories of illness, and recovery from bodily disaster, people use it in different ways and with shifting accents. I am going to point up some of these here.
Some people regard acceptance as essential in order to be able to move on from the present. Young rugby enthusiast Henry Fraser is one of these. His cervical spinal cord injury was a complete injury and at the level of impairment his loss was unequivocal. It was clear which muscles had lost their innervation, and would remain so, and which muscles Henry needed to retrain. In his book he describes a dark night of the soul in which he realised the extent of his loss, and for hours cried as he replayed the image of himself in a wheelchair. After that, and only then, he was able to participate fully in his after-injury life. “There was no point in being sad or angry…. I may as well just get on and face what was coming.” Like an athlete setting goals for the coming season Henry needed to be totally honest with himself about his level of fitness in order to work and push the boundaries.
Other people express a determination not to accept the new condition, even as they come to terms with the new way of living that the condition dictates. John Hull says that he will never accept blindness, but he struggles to find a balance between accepting reality and fighting to live as he wants. “If I were to accept this thing, if I were to acquiesce, then I would die. It would be as if my ability to fight back, my will to resist were broken. On the other hand, not to acquiesce not to accept, seems futile. What I am refusing to accept is a fact.” Towards the end of Touching the Rock, after six years of blindness and three years of recording his thoughts about it, Hull contemplates the idea that blindness might be a gift. Initially he resists the thought, “for if blindness is a gift, I would have to accept it.” As he considers both “the brilliantly destructive qualities of blindness” and also the ways it has empowered him and others in creative thinking, Hull decides that the gift that he will accept is something “deeper, on the other side of blindness”.
Some people talk about their difficulties with ‘accepting’ a new set of physical limitations. Tim Rushby-Smith tried to “fake it until you can make it”, as advised by his psychologist in the Spinal Cord Injury Unit. He realises that he had “accepted that [he couldn’t] begin to accept anything yet”. Later in his rehab he becomes one of the ambitious bloody-minded ones. Claire Lomas was always one of them, never content with the limits set by her Sheffield therapists.
Many of the accounts people report how clinicians, nurses and rehabilitation therapists seem to be keen to push clients to a stage of acceptance. Claire Lomas says that “it was obvious they had all been trained to try to get us to accept the injury straight away”, and when she decides to discharge herself early the consultant expresses his fear that she had not yet grieved for her losses. Julia Fox Garrison describes how she was told repeatedly that she was in denial. The argument seemed to be that because she was outwardly bright and cheerful, and yet also determined not to be content with her current level of disability, she must therefore not have accepted her stroke. But “just having a goal doesn’t mean that you’re in denial. It means you’re alive.” Even Henry Fraser was told by a nurse that he hadn’t fully accepted his situation. A desire “to do more than I was told I could do” is evidence for a less-than-full acceptance. As though the clinician is the only arbiter of what is possible.
Over and over again the stories people tell about recovery from illness feature this balance between bloody-minded determination to change their present situation, and a process of accepting what is possible. The balance may change from hour to hour. It is not an easy journey, and everyone takes a different route. Bloody-mindedness seems to be a characteristic of the people who get further in their rehabilitation than is predicted by the professionals. Ian Waterman openly admits as much.
But this raises the question of whether professionals push people to accept lower levels of attainment than is possible? Is this particularly the case with younger patients? The unknown extent of neuroplastic change following CNS lesions may make a prognosis difficult to estimate. Perhaps we clinicians should be honestly accepting that our experience of the normal leads us to underestimate the possible levels of attainment in those who apply themselves fully.
My conclusion is that we need to use the concept of ‘acceptance’ with greater care. And a glib diagnosis of ‘non-acceptance’ and ‘denial’ on the basis of someone’s determination to improve will undermine the therapeutic alliance between a nurse or therapist and that person as they work together through the rehabilitation process.