to err is human

I’m really looking forward to our new knitting-related releases, but wanted to say a few quick words before they begin (yes, it’s tomorrow!) about Handywoman. I’ve had so many wonderful responses to the book – from those in their own situations of chronic ill-health or disability, from those who understand exactly what I’m saying about knitting or the brain, and from those who (like I do) love Shetland. One of the things that pleases me most is that several people have written to tell me that they were not particularly expecting to enjoy the book’s final chapter (in which I discuss the history and ethos of Swedish company Etac, who created the turner, which first helped me to stand and move) but that its message about inclusivity, and the human benefits of good design, really struck a chord. So many kind readers have taken the time to send an email, leave a note here or on Instagram, or, in some cases, to sit down and write a letter to me about what Handywoman has meant to them. These responses have heartened and moved me, and I’ve known every time I’ve read one that this is what writing the book was all about. Because sometimes you wonder, when you are sat there, with the writing. Because writing a book – even when you love writing very deeply, like I do – is a hard process, full of doubt and questioning.

The most difficult part of the book for me to write was the second chapter, in which I talk about my experience of stroke and (mis)diagnosis. Tom finds reading this chapter very upsetting, because he was so close to what was happening, but to be honest, in the writing, my own experience was not the difficult part. This chapter was hard to write because what it had to cover was so much more than myself: I had to talk about the situation of women who, just like I was initially, are diagnosed with somatic or functional disorders, and suffer on neurology wards under the vague assumption that their problems are all in their heads. I had actually had a stroke – and my problems were organic. Their illnesses affected their bodies too, but their problems were assumed to be completely psychosomatic. It would perhaps have been very easy for me to think, or to express the feeling, that, as someone with an ‘actual’, and very serious brain injury my problems as a patient were more pressing, more important than theirs. And if I was a different kind of person, I might perhaps have written about my outrage at having an ‘unreal’ category of illness imposed on me before it was happily discovered that my problems were in fact ‘real’ – originating in my brain and not my mind. But this is absolutely not how I felt – I simply saw us all as women: women disabled in different ways, women struggling differently in our various, awful situations on the neurology ward, but all women, and all patients. And I knew it was important to write the chapter from this position, precisely because functional disorders are much more poorly understood in general terms than strokes, and so infrequently written about.

The chapter was about me – it was about my raw and personal experience of the most awful event in my life – but it was about other women too: women who are misdiagnosed, women who receive vague diagnoses, women who are dismissed and unsupported because ‘nothing seems to be really wrong.’ And if the chapter was about the diagnosed, then it was also about the diagnoser. Because I was also going to have to write about the neurologist who, having seen a recent psychiatric diagnosis on my record, wrongly assumed that I’d ended up in hospital part-paralysed because of a mental health condition and work-related stress.

There have been times in the past eight years when I’ve wondered what might have happened had my stroke been diagnosed more quickly, and if I’d begun receiving treatment immediately (36 hours elapsed between my stroke and the MRI scan which revealed the black hole in my brain). There have also been times when I’ve been rather angry. I’ve been angry as any woman with experience of a man who has made erroneous assumptions about her gender has been angry, and I’ve been angry in the very specific way of a disenfranchised female patient who has received an incorrect diagnosis from a powerful male doctor. But before I sat down to write the chapter I knew I had to let go of all vestiges of anger. Not only did I have to try to understand the neurologist’s position – the wrong assumptions he made about me – I knew I had to try to forgive him too. I had to be able to write the chapter from that position of forgiveness. He was a human being. He had made a mistake, to which he’d freely admitted. There was no point in my being self-righteous or angry about what had happened to me: indeed, I felt that to feel or to suggest residual anger in any way would be a distraction from the larger point I wanted the chapter to make about the treatment of women with functional neurological disorders.

So before I wrote the chapter I read a lot of writing by neurologists, I read a lot about strokes in younger people, and I read a lot about functional / somatic disorders and their diagnosis (much of which was very troubling). And then, when I sat down to write about the neurologist, I tried to regard our patient / doctor interactions as an exchange – an exchange in which I was making assumptions about him, just as he was making them about me. I also tried to understand, from his diagnostic and experiential perspective, exactly why he made the decisions that he did. I wrote that chapter with detached understanding and real forgiveness – and with no anger at all.

It actually felt fantastic to carefully think about and to finally write that chapter. I would say that I found its completion to be a definitive resolution of what could be legitimately be described as trauma, and I would heartily recommend writing about traumatic experiences as a very powerful way of sorting them out (seriously, give it a try).

When I’d finished the book, I thought I might send it to the neurologist, who I’d not seen or communicated with since my stroke. I was nervous about doing so – but I really wanted him to read that chapter. I wanted him to understand that I understood, and that, even as I acknowledged his error, or, if you will, the wrong that he had done me, I was able to see the bigger picture.

A couple of weeks ago I received a letter from the neurologist. I’m not going to tell you what was in this letter, but I will say that reading it was a very profound experience. Reading his letter, I finally understood something about forgiveness that has always previously eluded me. Like everyone, I’ve sat before a TV screen and seen injured people talk about forgiveness and only felt extraordinary anger on their behalf. But after reading the letter I think I understand more fully why those people are, in fact, not angry, why they are able to see the person who wronged them simply as an erring human, and why they might be able to forgo enmity in favour of common humanity. Because I wrote that chapter carefully and thoughtfully – from a position of forgiveness and understanding – I’ve been able to have a meaningful exchange with the man who misdiagnosed my stroke: an exchange of the kind which few patients and doctors will ever have – much less those whose relationship is defined by a serious diagnostic error. His fault was serious, and it had a serious effect on me, but it was important for me to understand – and for him to know I understood – that his error had been purely human. It’s hard to put the strengthening and restorative experience of reading that letter into words. But it’s an experience I won’t forget.