Tag Archives: pain

Don’t Quit the Day Job: Paul Bassett Davies

Lots of people don’t realise that although you may see work by a certain author on the bookshelves in your favourite shop, many writers still hold down a day job in addition to penning their next novel. In this series, we talk to writers about how their current – or previous – day jobs have inspired and informed their writing.

Today the writer we have with us is Paul Bassett Davies, author of ‘Utter Folly‘ and ‘Dead Writers in Rehab‘. His post is slightly different to the other writers we’ve had on the blog so far but it’s certainly one I can empathise with. I hope that Paul’s post brings comfort and hope to those of you in a similar position. 

Vic x

The job that had the greatest influence on my writing was Hospital Patient. If that seems like an unusual job description, let me explain.

Nearly twenty years ago I was diagnosed with a chronic illness. During the next ten years I underwent a series of surgical operations, and I spent a lot of time in hospital. Eventually it began to seem like a job to me. After all, I was spending about half my life in the role, it was hard work, I didn’t like it, and sometimes I thought it would kill me. So, just like a regular job.

But I flung myself  into my work, determined to be proactive. And, being a writer, I used everything that happened to me as potential material. In the process, I became a novelist.

You get a lot of time to think when you’re a hospital patient, and even more time in the long, slow weeks and months when you’re recuperating, or getting sick again. It’s not exactly free time, because it’s not free from pain, or fatigue or stress. That was why I started to write my first book – to escape all that. I came to writing novels late. I’d done a lot of writing before then, in the way of stage work, short stories, radio plays, movies, corporate films, music videos, short films, and a mountain of comedy for radio and television. But writing a book was something else, and in many ways I’m fortunate that I did it while I was unwell. It made me focus on why I was doing it. Which was, of course, to cheer myself up.

Writing my first novel was like telling myself a long, funny story. During the hours I spent telling it – the hours of writing – I was able to escape the dreary world of my illness, and enter the other world I was creating: a world in which I could, among other things, make other people suffer instead of me, and have a bloody good laugh about it. If that sounds callous or sadistic it probably is, and it’s just one of the many functions of telling stories.

But above all I wrote to give pleasure, firstly to myself and then, hopefully, to readers (although I continue to withhold it from my poor characters). Through all this I began to realise I wasn’t really interested in writing or reading things that didn’t take me out of myself, and change me in some way. I like to think I’m clever, but I’m not concerned with mere cleverness. I’m looking for something else, and the best word for it is delight. I want to delight, and to be delighted.

The work of other people which most often delights me also tends to be completely distinctive. That’s why I’ll always try to see anything the writer and director Robert Lepage does, because it’s not like anything else. The same goes for the music of Patti Smith, Tom Waits or Laurie Anderson. And I’ll always read a book by Magnus Mills or Nell Zink, or watch a Wes Anderson film.

All these people have a unique voice, and I like to think I’m developing mine. My first novel, Utter Folly, was long and sprawling, but my second, Dead Writers in Rehab, published last year, is more contained. And among the good reviews it’s received, those that please me most are the ones that say it’s unclassifiable: that it can’t be categorised, and that it occupies a niche of its own.

My job as a hospital patient allowed me to discover what it is I really want to do with my time, and it changed my ideas about sickness and health. I began to focus less on recovery, and more on discovery. The road to recovery is long and arduous, and its goal is ultimately unattainable: in the end none of us recover from life. But the road to discovery can be enjoyed for itself. It’s all about the journey, and finding delight in every step of the way.

 

Sjogren’s Syndrome: a misunderstood condition.

This is not a post about books or writing. Bear with me, normal service will resume soon (I hope).

It’s been a while since I wrote about Sjogren’s Sydrome (pronounced show-grins although there is nothing funny about it). Over the past several weeks, I have experienced what medics and people with autoimmune diseases call ‘a flare’.

Many autoimmune conditions – like Lupus, Rheumatoid Arthritis, Sjogren’s to name a few – can be compared to waves on a beach. They crest and fall, making the condition totally unpredictable. It’s a constant guessing game. Will I sleep tonight? Will I be in too much pain? Will I walk with a limp tomorrow? Will I walk at all? 

During good times, you can almost forget you have it. Almost. Autoimmune conditions can go into remission but they’re always lurking. In all honesty, most of the people I know who live with autoimmune disease still suffer every day but when things are good, the pain is manageable and they can function. Whether good or bad, I take a lot of medication every day. Even during the good times, I have to pace myself and not over-commit. I find this one of the most frustrating things about Sjogren’s.

Actually, I find hundreds of things annoying about the condition.

Although Sjogren’s is becoming more widely recognised, thanks in no small part to Venus Williams for being so honest about her experiences, Sjogren’s is often represented as a condition where patients have ‘dry eyes and a dry mouth’. I’ve had doctors say to me “Oh, so do you get a dry mouth with that and gritty eyes?” Yes, I do and I wish they were the only symptoms. They’re not pleasant – the dry mouth makes eating certain things difficult and sometimes I get food lodged at the back of my throat – but I would far rather contend with them than what I do actually live with.

In addition to the dryness in my mouth (caused by the fact that Sjogren’s has destroyed many of my salivary glands) and the dry eyes (I produce barely any tears so even when I cry, my eyes are pretty much tear-free), I suffer daily pain all over my body, issues with my lungs and kidneys, brain fog and fatigue. I was told in 2013 by the lung specialist that I may need chemotherapy to dampen down the immune response. Thankfully, that hasn’t been required.

In 2012, when I was going through my last major flare, I was told by a Rheumatologist that I should prepare myself for the fact that I would (not if, would) “end up in a wheelchair”. Every time I wake up with more pain than usual, I panic and wonder if this will be it. I’ve spent time this year working towards acceptance of this. That’s not to say I’m going to hang up my shoes and give up, I will keep walking for as long as I can, however acceptance means I can concentrate on recuperating instead of putting my immune system under further pressure by worrying.

When I saw the emergency Rheumatologist a couple of weeks ago after begging my GP for a steroid injection (which has helped me pick up previously), she commented on how hypermobile I was. People have mentioned this to me before but I never realised that what I could do with my joints was unusual until a nurse went a bit funny during an assessment. The other week, the Rheumatologist warned me to be mindful of dislocation which is common in people with hypermobility but thankfully something I’ve avoided thus far (apart from that one time…). She also congratulated me on not having a steroid injection since 2012, as thought it was something I had achieved which, I suppose, it was in a way.

Over the past few weeks, I have wildly vacillated between sleeping sixteen hours a day and constantly tossing and turning, trying to minimise the pain. It’s the fatigue that has always got me down the most. The feeling that, no matter how long or how well you have slept, you are still exhausted in the most indescribable way when you wake up.

I know I am improving because walking around my house no longer feels like wading through treacle however going to the supermarket is still guaranteed to require a rest before and after.

For those of you who know me, you’ll know I am a motivated person. I hate that this condition makes me appear what some may term as ‘lazy’. I hate that it limits me in more ways than most people can imagine. I feel held to ransom by my own body every day (“if you do x then y, I am going to punish you. So choose one”).

Although I am more accepting of my body and the condition than I ever have been before, I still struggle. I struggle because I want to do more, be more. I don’t want to have to choose to do one thing or another – I want to do both and not suffer for it.

I guess I have a way to go yet. But, you know what? I’m tenacious. I’ll keep on at it. You might see me struggle but you’ll never see me quit.

Vic x

PS – I wrote a poem about Sjogren’s a few years ago, you can read it here.