During the four months or so of lockdown / isolation, it has forced writers to confront their emotions in ways that they wouldn’t have dared looked at previously.
Take the case of Sarah James/Leavesley, author of eight poetry titles, two short novellas and countless other projects who has just bought out the hypertext multi media poetry narrative > Room. The collection-length series of ‘poetry rooms’ is inspired by Sarah’s experiences of living with type one diabetes from the age of six. It combines written text, animated photos and audio to create a free experience where readers can determine their own route through the narrative by clicking on different words in blue to enter a new room. Those who make it to the end also have the chance to help create a new virtual room for the project..
When asked about the background to this project she began “I was diagnosed with type one diabetes when I was six. That was the time still of glass syringes for daily or twice-daily insulin injections, yet there seemed to be a mantra along the lines of ‘diabetics can have normal lives’. I grew up with that mantra, believing it for 25-30 years. It was only when I started to look more deeply at the depressions etc which I went through that I started to realise the truth is actually more like ‘diabetics can have superficially normal lives but there are lots of 24-7 sometimes exhausting tasks, adjustments and compromises behind the scenes to make it appear that way’. This particularly after living with it for 30+ years. Before then, I’d written the odd poem about diabetes but that was it. Around this time, I also read the amazing Nine Arches Press anthology, Stairs and Whispers: D/deaf and Disabled Poets Write Back (2017)and chatted with fabulous local poet, Holly Magill, about poetry and disability. This gave me the courage to start writing about the diabetes and my experience of life filtered through that background and viewpoint.”
“The Room” Sarah carries on is written in the third person “ through the eyes of the six-year-old traumatist, which is the part of me that even as an adult feels the world completely upturned by the diagnosis and everything that has come with the diabetes for me, including recurring depressions, exhaustion and sense of isolation etc. Some of the poems are directly about this, but many are about everyday life events viewed and experience with this background. The room is both being trapped within the mind, diabetes and my diagnosis, but it’s also about being trapped slightly outside or at a distance from a truly normal life/able-bodied life. Progress through the narrative is like my experience of living with diabetes; it’s labyrinthine, with an appearance of control in choosing which word/hypertext link to click on but no control at all in terms of the results (which room the reader will actually then find themselves in, though trial and error of testing out different links does allow better prediction/control if the reader ends up back in the same room later or explores > Room a second time).
I, myself was first registered with Diabetes when I was 39 and have spent nearly ten years in a constant battle to try and control my own blood sugar. Sarah advises “When I was diagnosed with diabetes, there was a lot of emphasis on diabetics controlling their blood sugars to keep them at healthy levels. Treatment has come on a long way since glass syringes and testing my urine for excess sugar. I can do finger-prick blood tests that tell me almost instantly the levels of glucose/sugar in my blood and I have an insulin pump allowing constant insulin infusion through a canular so that the insulin which goes into my body is closer to my body’s individual actual needs. My nearly 40-year experience of diabetes though is still not one of control. It is more like frequent monitoring of blood sugar levels and fast reactions to this based on past experience of as many of the measurable variables as possible (coming at me from all and sometimes unexpected directions). This is not an exact science and not all of the many factors that can affect blood sugar levels are measurable or predictable, so it is not actual direct ‘pre-defined results’ control as such.”
When asked next about what hopes she has for this project, Sarah answers “ For those who don’t have diabetes, it would be great if the project gives them some idea of what living with this on a daily basis can be like, in terms of how it affects everything in life in bigger and smaller ways. For other diabetics, I hope the project will help them feel that they’re not alone in dealing with type one diabetes 24-7 and finding that it affects every aspect of their life, including things that aren’t always expected or easy to deal with. I guess it’s important to stress that > Room is based on my diagnosis and life with type one diabetes. Every diabetics’ experience is as individual to them as every able-bodied person’s experience of life, though there may be some similarities due to the treatment and nature of diabetes.”
“Many of the poems don’t directly reference diabetes either” She concludes – “there are aspects of social and political commentary, friendship, love, depression, the nature of thought, philosophy, how the past shapes who we are…so lots of aspects that are common human experiences, regardless of disability. Or, if you like, some aspects of normal life with no or little hint of behind-the-scenes diabetic factors.”
More about this project can be found at http://www.sarah-james.co.uk/?page_id=12304 where Sarah advised in a P.S. a few days after I finished this article originally there are 45 rooms, same as her age, somewhat like with/influenced by Lyn Hejinian’s My Life.) Ostensibly, the image partly illustrates some of the contents/subject matter in the poem, but this animation also demonstrates how she feel about diabetes and managing blood sugars – lots of things in constant motion to deal with, like the butterfly and each drop of rain.
(Originally published on the Sunday Tribune on 29 July 2020)
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