Changed at a stroke

Frances L. Vaughan on writing with stroke survivor Jody Mardula.

Jody Mardula [above, right] was the Director of the Centre for Mindfulness Research and Practice at Bangor University when she had a subarachnoid haemorrhage. We had got to know each other just a few months before, as university colleagues, when – by extraordinary coincidence – I was setting up a research project about acquired brain injury (ABI). The research looked at the impact of mindfulness, psycho-education and individual psychotherapy interventions on self-awareness and mood in people with an ABI and severely reduced awareness of their difficulties. Jody allowed me to use the centre’s mindfulness teaching materials and we discussed how they might be adapted for people with a brain injury. We had no idea that this was the start of a much longer and more personal conversation and journey together.

The next time we met was another coincidence. I was working on the research project, seeing participants in the North Wales Brain Injury Service where I had worked as a clinician for many years. Jody was there to see one of my colleagues after her haemorrhage. I made a mistake and walked into the wrong room, the one they were using. Jody recognised me instantly, but had to tell me who she was. She looked so frail in the early days of her recovery, and I was shocked to see how much she had changed.

I started going to see Jody at home. We drank tea, talked, and laughed a lot; getting to know Jody was a total delight. There was no plan or purpose to this in the beginning, but I soon began to realise that our conversations offered a tremendous opportunity. Jody was unique. She was able to reflect so clearly on her experience and how things felt on the inside – undoubtedly aided by her long career as a psychotherapist. Relatively few people with a significant brain injury can do this, and I was captivated by her vivid descriptions.

It took a while to persuade Jody that a book about her experience could be helpful for others in the same situation. She had no idea that she was unusual, but the idea grew on us both over time. Jody would write her story, based partly on the diary she had kept, and I would add my clinical neuropsychologist’s perspective. This commentary ended up in two sections. The first describes Jody’s cognitive difficulties, and provides some advice about the management of these problems – with attention, memory, executive function and perception. The second addresses emotional adjustment following a stroke or other brain injury: loss, grief and emotional distress, self-awareness, identity, acceptance, and the needs of the family after a brain injury.

‘I am in a different land’
Jody’s story revolves around a metaphorical journey, that we often refer to as ‘Over the Rope Bridge’. At this pivotal moment, Jody realised that she had been fundamentally changed by the stroke, and there was no going back. The rope bridge hung precariously between the old familiar world, and the strange, new world of post-stroke recovery that lay ahead. ‘I am in a different land – I realise that I cannot go back – I am changed – everything around me is changed – I can only go on.’

Jody’s powerful narrative takes us up into the mountains and down again into a new world, across a plain, into dark and foreboding woodland, and then to the edge of the woods where she built a camp and stayed for several years. Each part of the journey represents a distinct phase in Jody’s recovery, and then towards the end, the diagnosis of Jody’s vascular dementia. Jody illustrates her story with pen and ink drawings, she includes poetry that resonates with her narrative, and mindfulness practices that she developed to help her cope in daily life.

The hidden nature of brain injury
Jody’s difficulties were more severe and more complex than I realised at first. In daily life at home, and later back at work, Jody struggled with things that could not have been detected by a formal neuropsychological assessment. Jody’s own awareness of her difficulties developed slowly, over several years. We were both oblivious to some of her problems when we set out on our book journey together – this so clearly illustrates the invisible, hidden nature of many aspects of a brain injury, an important theme in Jody’s story.

Jody had significant problems with attention – she was easily distracted, and could not divide or control her attention. Conventional long mindfulness practices were impossible, especially at first. Jody’s new practices, which are included in the book (in print and as voice recordings) are shorter, simpler, less ‘wordy’ and based on elements that are more tangible. One of them, the Owl Practice, was created specifically for people with dementia, which Jody also has now.

I could see Jody’s difficulties when things went wrong; Jody also understood them at the time, but could not hold onto that insight, describe it to others or avoid the same difficulty arising the next time. Jody’s narrative reflects the development of her self-awareness, and how challenging it was for her to construct a verbal understanding of her stroke. Despite this, Jody often describes her condition perfectly, using physical objects as powerful metaphors instead. She was a jigsaw in pieces, or an unravelled knitted jumper. Her working memory was an overflowing bowl of oranges; the haemorrhage, a tsunami of blood ripping through the landscape of her mind and her memories.

Many people are not fully aware of the consequences of their stroke or other brain injury. When this blind spot is severe, it can reduce the person’s motivation to participate in rehabilitation, and slow their recovery. Gently improving awareness can be an important part of neuropsychological rehabilitation.

Fortunately, Jody had enough awareness of her difficulties to be highly motivated. Once her ability to plan and to organise herself started to return, Jody became an expert in her own rehabilitation. She had an intuitive sense of what would help at each stage, she combined mindfulness practice with cognitive rehabilitation in some very creative ways, and was determined to live as active and normal a life as possible.

Curiosity and acceptance
Jody had a wide range of difficulties after her haemorrhage, ranging from a weak leg to subtle changes in executive control. Jody’s visual perception of faces, places and movement, many aspects of her memory, her capacity to filter and process sensory information, and to hold things in mind were significantly affected. Whilst Jody was sometimes bewildered and distressed by these multiple difficulties, she often brought an attitude of curiosity and acceptance to the changes she experienced. This attitude, which stemmed from her longstanding mindfulness practice, allowed her to turn instinctively towards an awareness of herself and her circumstances, even as she lay in hospital, in great pain. She paid conscious attention to her hands, her breath, or the coolness of the bed sheet, and this sense of being present, rather than caught up in panicky thoughts, brought some comfort at a very difficult time.

Although Jody had the advantage of an established meditation practice woven into her life and work, we believe that people with a brain injury but no prior experience of meditation can also benefit from simple mindfulness practices. We have seen this whilst working with brain injury groups since our book was published, and I observed it many times in the research project. The practices can be soothing and relaxing, they can ground us, change our perspective, and break the loop of worry and concern.

Jody’s story is eloquent, brave and moving, although not always easy to read. There is darkness and despair, there are uncomfortable truths about what recovery means, and about well-intentioned but misplaced reassurance from others. Jody was not ‘back to her old self’ or as recovered as people often assumed. But then, Jody’s capacity to empathise with people who did not understand her, to reflect on the emotional impact of setbacks and disappointments and start over again, is quite humbling. She brings her multi-talented life experience, including her career as a psychotherapist and mindfulness teacher, to a topic that speaks to us all… how to cope when a person – an identity and a set of abilities – is changed at a stroke.

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