Introduction
Yesterday [March 3] I was catching up on Late Night Live with Phillip Adams, an ABC Radio National show I have been following for the last 30+ years. In all that time I had never heard a conversation about Multiple Sclerosis [MS] in any public forum, or about disability for that matter.
The reason I was hearing a conversation now was clear. Phillip’s guest was Robert Douglas-Fairhurst, a Fellow and Tutor in English at Magdalen College, Oxford. Robert had written a book – Metamorphosis: A Life in Pieces. A quick hunt on Amazon told me he’s a prolific author of books on English literature.
Metamorphosis: A Life in Pieces is a reflection on Robert’s experience of being diagnosed, and living, with MS.
I bought the audiobook and got into it straight away. This isn’t a review of the book. I want to explore why this kind of writing has the exposure it has, compared with other stories about disability.
You can listen to Phillip’s chat with Robert on the ABC website if you don’t have the Late Night Live podcast on your phone [I have the separate stories rather than the full show option].
A worthy tale well told
MS is one of a number of autoimmune diseases. As Robert observes, becoming aware that your body has turned on itself is quite an experience. It’s a slow reveal in a macabrely tantalising kind of way. It is a seriously scary experience.
I have little understanding of MS, although I spent quite a bit of time supporting a former colleague to obtain critical workplace adjustments. Some years before that, I was contacted out of the blue by a workmate who had suddenly disappeared. She told me she had MS and, as her condition deteriorated, her treatment in the workplace distressed her. She finally went on extended leave in despair. She contacted me because I was the only person who treated her well. She was resigning and wanted to let me know she appreciated my support. I didn’t know she had MS. I was supportive because it was evident something was going on and she was trying to handle it. She told me she wouldn’t be able to return to work as her conditioned had continued to deteriorate.
This was before I contracted Guillain-Barré syndrome (GBS), and I felt frustrated there was nothing I could do to help. I didn’t know anything about MS. We agreed to stay in touch, but that was the last time we spoke.
Acquiring a disability through a traumatic event [physical or psychological] or via the slower process of disease is a profound business that people cope with in differing ways. Suddenly one’s normal is shattered and a new normal is constructed over time. Often, we are left to sort out our responses unaided, and we fall back on what we have.
Robert is a Professor of English Literature and an accomplished author, so he wrote a book with a lot of connection to literature. An author of his reputation and standing will attract the interest of some shows and not others.
Metamorphosis isn’t just a book about getting MS, but what happens when a Professor of English Literature gets MS. For me it is a deeply fascinating story very well told. Others may prefer stories of acquiring and living with a disability as told by sports people, members of the armed services, victims of motor vehicle accidents and others. These are often public disability heroes. Their stories are told well enough, but without the erudite flourish Robert subtly wields. So much depends on what floats our boats.
A sense of connection
Guillain-Barré syndrome (GBS) is one of the autoimmune diseases and like MS it comes in multiple expressions. In both, the nervous system is attacked by the immune system and muscle weakness and paralysis may be the result. For some the onset of an autoimmune disease is slow, for others it is sudden, as it was for me. Robert describes the relatively sedate process of being aware something was up and of getting a diagnosis. For me, one moment I was crook with something like a bad cold and the next thing I know I am lying on the loungeroom floor as paralysis set in.
Robert reflects on literary associations as he goes through the steps of being diagnosed, and later, as he becomes aware this thing isn’t going away.
My response, when I finally recovered the ability to make coherent movements was to write and to read – but non-fiction rather than literature. In 2008, when I acquired GBS I was struggling through a Masters Honours thesis. When I recovered my writing ability in mid 2009, I completed my thesis as well as sending out email blogs to family and friends, keeping them up to date on my progress.
So, for me, coming across a book that is a personal account of living with MS was as close to engaging with the voice of a person who had a similar kind of experience as was I likely to find. Here I am not saying there is a parallel between the experience of living with MS and GBS. The sense of similarity is in the existential drama of becoming aware that one’s normal has been devastated and a new one is being formed by terrible and confronting degrees.
The process of psychological adjustment is probably universal for any person who experiences the acquisition of a catastrophic disability, but the details will be different. There is a difference between being suddenly and catastrophically hit and then recovering somewhat over time, and progressively becoming aware that mounting instances of bodily malfunction are signs of something not at all good and this is permanent.
We shared an aching uncertainty about how things might pan out. For me it was wondering to what degree I might recover, and for Robert it was wondering how bad things were going to get.
What Robert does is disclose his inner processes in an authentic and articulate way. He has the resources to flesh them out in a literary context which gives them a depth and beauty rarely found.
An articulate expression of the inner life is a rare thing
Talking about the experience of acquiring and living with a catastrophic disability is hard if all one has is the stark utility of plain language. For that to be workable there must be trust and comfort – a bold capacity to dare assume intimacy. This is something that great fiction writers achieve with their ability to clothe language in evocative beauty without obscuring the utility.
The rest of us struggle to do this, even with those close to us. For most of us telling our stories to others isn’t something that comes naturally. There’s a performative element that we must learn – and an authenticity we must develop and preserve.
Metamorphosis: A Life in Pieces tells the personal story of transformation into a radically different normal with the instruments of literature. It’s a rare privilege to be invited into a world that is not fictional – and it’s an enriching and beautiful place to visit.
There are some aching frank descriptions of living with a disability. Carly Findlay’s Say Hello stands out for me. Carly lives with a severe skin condition called Ichthyosis which leads “to dry, itchy skin that appears scaly, rough, and red.” I found her book a challenging and disturbing read because of the cruelty she was subjected to.
Robert brings an erudite ‘spoonful of sugar’ to help his truth medicine go down. Maybe that’s what got him on a show like Late Night Live. I am grateful for this. Its less a case of a book about MS and more about the storyteller. That can backfire when the storyteller is a disability hero whose main claim to fame is that their disability now defines who they are as a public presence.
Robert’s primary role is as an academic who happens also to have MS. He has taken a catastrophic life experience and looked at it through a sophisticated lens. Its not better than the raw accounts, just rare in comparison. It also means that the subject of MS will reach a far wider audience.
Conclusion
When we dare, we tell our stories as best we can. But story telling is a skill that few master. What is intended as a recitation of fact can be interpreted as a complaint that implicates the listener/reader. Empathy is a desired state but in achieving it takes skill to avoid precipitating sympathy, which can be reactive and ephemeral. Empathy demands inner change in the listener/reader. Sympathy doesn’t. It requires only a performance which has no enduring consequence.
Other than silence there are two options. The first is to process one’s existential trauma first, but this is fiendishly difficult and often results only in the creation of a heroic mask of performative mastery. The second is to craft the trauma into a narrative with authentic sensitivity and skill.
I think we are mostly trapped in option 1. This means that our best attempts may be good enough to serve our purposes, but our worst attempts create and champion heroes whose existential wounds are not only unhealed, they keep the hero locked in an emotional anteroom where they receive their audience. The authentic is left waiting and wanting.
Robert has treated us to an example of option 2. His reputation as an expert on story telling makes talking about his book in polite educated company a good thing to do. Its not often that this happens. I am a dedicated consumer of sophisticated discussions, and outside specific topic podcasts, I have not encountered a general content show talking about living with disability in any context or depth.
This is such a rare experience. Please do take the opportunity to read/listen to the book. Not only do you get an open discussion of the personal experience of living with MS, but you also learn about the disease itself, and its presence in literature.
As always, I have hyperlinks to Amazon because readers may need to access ebook or audiobook versions. Please support your local independent bookshop whenever you can.