Travels with a Zimmer Frame

Living with the Enemy is a 2013 guide to living well with pain, illness and disability. A friend with Multiple Sclerosis (MS) recommended it, and it’s already helping me a great deal. It’s a refreshing change from the well-meant platitudes that get usually get trotted out at times of disaster. Am thinking here of the well-meaning woman who kept trying to help me by asking me if I was a ‘glass half-full person, or a glass half-empty one’. I couldn’t have said, having gone half-blind and being too busy sloshing whatever liquid I had all over myself.

Intelligent and sensitive

The enemy in question here, as you may have guessed, is whichever illness or disability you’re living with. This guide is written by a clinical psychologist, Ray Owen, who works in cancer and palliative care for the National Health Service in England, and it’s an intelligent, sensitive piece of work that doesn’t patronise or demean.

Owen should have a large readership. Across Western countries up to a third of us have a long-term physical health conditions, such as diabetes, arthritis, asthma and other illnesses. But it’s in the nature of chronic illness to make people feel isolated, alone, strange, different, or at least that’s my experience. Put it this way, we’re not getting together with each other much.

Dropped altogether

Some people dropped me altogether when I got my diagnosis of MS seven years ago, presumably fearing they’d catch MS off me, but that was nothing compared to how I was attacking myself, wondering in the small hours what I could have done to get sick. Other people – I’m thinking here of my husband – were sensitive, kind and extra-thoughtful, putting up with my anger over what was happening to me. The author understands this, writing of one patient, Bill: “The psychological effect is bringing [him] more misery than the symptoms themselves.” True, I can relate to that all too well also.

Bulk-buying the Evil Eye

One of the first things I did after diagnosis was buy a £100 of Chinese herbs that promised to help. They made the house smell nice, but didn’t do anything to help with the disability. Same goes for the bulk buy of Turkish anti-evil eye charms. They’re a little menacing, but I’ve got to admit I don’t think they’ve warded off any demons. 

What I like best about the book is that it acknowledges how long-term illness is frightening; that it can make us put on weight, get angry and frustrated with the people we love the most, that we’re not into saintly suffering.

The book advises accepting that we’re not the people we used to be. It hurts even as I write this, but I will never again be the young journalist travelling the world I used to be. It hurts a lot. But looking back longingly to a past I can’t hope to recreate makes the present more miserable. I haven’t had the courage to tackle the section where we’re meant to write out how we used to be – young, slim, reasonably attractive, with a good job, in my case – versus how we are now. In my case, overweight, middle-aged, disabled, with a damaged memory, unemployed. That doesn’t give the full picture, though – fortunately. I have a lot more love in my life today; love for my family, love from them. Yes, I’m unemployed, but that’s given me time to work on my own writing, a long-held dream. It’s not all bad,

Not the people we used to be

A lot of trouble comes from something called dissonance, says Owen. Dissonance (I had to look it up too) is what happens when we get stuck with the expectation that things ought to be a certain way (in my mind being the young, jet-setting journalist I used to be) versus the present (mentally confused, memory problems). My energy levels are impaired. I get confused. Owen suggests we take a leaf out of the Stoic philosopher Seneca’s book and adjust our expectations, become more realistic, so the gap between expectation and reality isn’t so big. “The recognition that you’re not the person you were is the battle half-won,” writes Owen.

Accepting what’s happened

I like how that book acknowledges that physical illness is frightening, that there’s sadness about what has been lost, worry about being a burden to family and friends, friction with people you used to enjoy spending time with. There are helpful asides that strengthen our understanding of how to make peace with our failing bodies, for all their shortcomings: “When I use the word ‘accept’ here, I’m not meaning you have to be pleased about it or that you have to give up on improving aspects that can be changed…. Rather…. I’m advising accepting ‘this is the way things are at this moment.’” My life is the easier for reading Owen’s pragmatic, sensitive advice on coping with long-term illness.

Routledge Taylor & Francis Group, August 2013

Downloadable audio exercises and resources are available at: www.routledgementalhealth.com