Today is the start of Carers UK’s Carers Week – aimed at raising awareness of caring, highlighting the challenges that carers face and recognising the contribution that carers make to families and communities.
To mark this, V. Press editor Sarah Leavesley talks to Alex Reed about his experiences as a carer and how this has fed into the poetry in his V. Press pamphlet A Career in Accompaniment…
Alex, could you say a little about your role as a carer and how this features in your poems?
I started writing poetry a few years back. I’m aware that the idea of ‘writing as therapy’ is contentious, but for me, it’s become a way of exploring and bearing witness to some of the things that are going on in my life. I’m trained as a family therapist and so I guess its inevitable that I would think of the practice of writing in this way.
That’s not to say that I think writing necessarily ‘helps’ in the sense of making things easier – but it does help me to feel I’m attending to what’s happening on in my life and living it more fully, as well as trying to create something that may have value to others.
In my pamphlet A Career in Accompaniment I write about my experience of living with a loved one who has long-term illness, and of being a carer. My partner Jan was diagnosed with multiple sclerosis (M.S.) more than fifteen years ago. M.S. is a fairly common illness, but impacts on people very differently. So if someone is reading this and has recently been diagnosed, or has a loved one with M.S., its important to say that the progression of the illness is very variable. Jan has been unlucky – M.S. hit her hard. And, as yet, there are fewer treatments available for the type that she has.
In the early days we thought she might get off fairly lightly, but her disability became increasingly severe, a situation she’s managed with wisdom and skill. Jan had to give up her career as an academic, and I also retired from work earlier than I otherwise might have done to care for her. Illness and disability can have huge financial consequences as well as placing many other restrictions on people’s lives.
A stanza in the poem ‘Twelve Years’ touches on the symptoms of M.S. first appearing and our early hope that the illness would be benign:
The trace of a limp, stumbling
in the weary hours. Almost exotic,
still deniable. The lucky ones,
we would escape without damage.
What has been your hardest experience as a carer?
In some respects, we have been fortunate. Our own material circumstances are OK, and although M.S. has impacted on family life, it hasn’t prevented us raising our wonderful children or split us apart as a couple. We also have a big network of friends, which has been crucial.
The major stresses, from my point of view, are to do with living an increasingly constricted lifestyle. Our local services are good and staffed by great people, but without wishing to sound ungrateful, it often feels like a drop in the ocean. Looking after someone 24 /7 is hard graft, and there’s not many opportunities to take a break. So, I’m in house a lot, and rarely get out to see friends, go to a reading or a gig, watch a film at the cinema, or whatever.
There’s a lot of loss involved, and this is largely what my pamphlet is about; about feeling haunted by the things Jan and I used to do and can’t now, or who we might have been, the things we wanted to do - generally quite ordinary things, that most people take for granted.
This sense of being haunted by what’s lost inspired the poem ‘Ghost’, which ends:
….But I’d prefer
to say that I am haunted
by the ghost of her motion,
the flow of her, as she walked
through our kitchen on any afternoon,
or how, pushing her hair back,
she leant across me,
the world lit in her eyes.
Which was the most emotional poem for you to write in ‘A Career in Accompaniment’ and how did you deal with that emotion?
The one that springs to mind is ‘As close as I could’. I actually wrote that poem at a point when I hadn’t been writing poetry all that long, and it just seemed to ‘arrive’ in a moment where I was feeling quite overwhelmed by sadness and by my inability to respond adequately to the predicament we were faced with.
As a poem it’s very simple, but I had no wish to revise it much afterwards. It seemed to speak a truth about that particular moment, and my hope is that it would be recognized as such by others who have been inside similar situations.
I’m not sure how to respond to the second part of your question, but I’d say the act of writing is valuable in giving voice to something that wouldn’t otherwise be spoken about. This gives rise to another dilemma though – do you show what you’ve written to others, and what does it mean for something so intensely personal to become more public?
Could you say something about how balancing real life fact / emotion and crafting of language and details to create the best poem works for you as a writer?
Anyone who writes will know that after getting the initial idea / experience down on paper there’s generally an arduous process of standing back and crafting the material into a poem. So the actual experience or feeling that was initially in your mind might become, or better to say will inevitably become, transformed through the writing and re-writing process. When I’ve showed some of the poems to Jan she’s said, ‘I don’t remember it like that!’ Interestingly, one of these was ‘Fall’, which I thought I’d written pretty much as it happened! It’s like the Buddhist story about the blindfolded men and the elephant – each one thinks they are encountering something different.
In the later stages of revision I try to keep in mind the question, ‘is this honest?’ So, for example, the prose poem ‘Things Illness Stole’ reads like a fairly straightforward account of a night out, but it’s actually a bit of a composite of different memories. But I feel it’s emotionally true to who we were and what we’ve lost through illness.
Are there any experiences you couldn’t, or wouldn’t want to, put into poetry?
There are many experiences to do with caring, illness and disability that feel too overwhelming, or just too personal, to write about. Perhaps with time and distance, I might be able to, but not now. Some aspects are so stark that I feel I couldn’t write about them well enough.
It’s interesting, because when I have put the poems ‘out there’ for others to read I’ve been worried that they will feel I’ve said too much about matters that should remain private. That there is something distasteful or disloyal to Jan and our relationship to publish them. But I think anyone that’s lived with this level of illness - and that’s most of us sooner or later, of course - will know that there’s much, much more that could be said about the pain and stress of the experience.
On the flip side, it could also be argued that the poems in the pamphlet don’t touch on happy times enough - the joy in our relationship with one another and with our family and friends - that illness isn’t the whole story.
Reading ‘A Career in Accompaniment’, I get the feeling that this is not just about the experiences of yourself as a carer but also about giving something back to the one being cared for, in this case, your wife, Jan?
Yes, I’m pleased that you asked that. The poems are, essentially, love poems.
I also wanted to create a pamphlet that would have meaning for other carers. That’s a strong ethical dimension for me. There was a guy doing some work in our house recently and he was telling me about his wife who was ill, and how he might have to stop working, but that he loved his job. I thought, ‘I know how this feels, mate – to be struggling to continue getting to work, but at the same time to be worrying about your partner at home, and to be fearful about what it will mean if you need to stop working - financially, emotionally, socially, and so on. Now, I’ve no idea if that guy reads poetry, but I’d like to think that if he did see my pamphlet, that he’d feel I’d put something down that reflected his experience.
One of the poems in the pamphlet, ‘Comrades’, is about brief conversations with a neighbour who has also been a carer, and how supportive this kind of small connection can be:
He says ‘It’s a beautiful morning,’
asks what I’m doing with the day.
I tell him I’ll stay close to home,
my wife’s not well. And he tells me,
‘I had six years of it.’
Two men talking about grief,
tangentially. He is letting me know
he has been here. That he remembers.
Many, many people, old and very young, men and women, (though most often women, of course), are caring for loved ones and it’s not often spoken about in this culture. Or, when it is spoken about, it’s generally a lot of hypocritical platitudes from politicians and big organisations.
Thank you, Alex, for sharing your experiences of caring, the ‘behind the scenes’ insight into the writing process and the poems themselves.
More information and a sample poem from A Career in Accompaniment can be found here.
The pamphlet, which is published by V. Press next month, can also be pre-ordered now using the PayPal link below. (A Career in Accompaniment is published on July 11, 2016. Pre-orders will be dispatched that week.)