Sunday, 12 May 2013

Being Sick With Grace: An Appreciation of Toni Bernhard

For the past five years, since who-knows-what triggered a nervous breakdown in the spring of 2008, I’ve been an anxious little bunny. Intermittently, at least. It’s always there in the background, and it needs careful managing if I’m to keep it there. But it’s also nine years since I first developed chronic pain. The anniversary is only a few days away – 24 May. I turn to that thought not with an eager bunny hop, but a kind of regretful sigh. Very few of us look forward to our birthdays as we get older, as it’s an uneasy reminder of you-know-what. But at least with birthdays we have something to actually celebrate!

Nine years sick – as they would say across the pond. Over here it’s ‘ill’ – or, if you’re a supporter of the Con-Dem government, or believe what you read in the shit rags – ‘fraud’.

Imagine the relief I felt when I opened Facebook one day and found that my friend Toni Bernhard had posted her new blog piece: ’12 Tips from 12 Years Sick’. When I first ‘met’ her she was just posting ’10 Tips from 10 Years Sick’, and now I’ve known her as a friend and been helped in very practical (and spiritual) ways by her work, for two years. That’s a pretty happy anniversary, even if our mutual ‘sickness’ anniversaries, which both occur at around the same time (French Open Grand Slam – tennis is one of several shared interests), are not.

Toni Bernhard used to be a law professor at the University of California in Davis. In May 2001, on a trip with her husband to Paris, she fell ill with what she thought was severe flu. She still hasn’t recovered. Her doctors have classed her illness, which prevents this life-loving, hard working ex-professor from spending much of her life outside her bedroom, as Chronic Fatigue Syndrome (M.E. in the UK) – which many people now suspect to be several (or many) discrete illness(es). Toni sometimes wryly refers to it as ‘Parisian Flu’.

I discovered Toni’s work while listening to a recorded talk by Tara Brach, which mentioned a new and remarkable book, ‘How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers’. And it is remarkable: a clear but conversational self-help book, with an autobiographical thread running through it. It’s so helpful and at the same time so personal, that when I read it I feel almost as if she’s talking to me personally. And yet it’s become a bestseller and has helped countless thousands of people like me.

Apart from this rare personal quality, other things that struck me in her writing included a total openness about how it took her years to ‘get it right’ – and how she still struggles with her illness at times, even now. She understands how it feels to hear the remark that every chronically ill person has to endure at times: “But you don’t look sick!” And she believes, and more importantly shows, how it is possible to find joy and equanimity even when our lives have taken a drastic turn, and left us with something painful and lifelong (possibly) that we didn’t ask for. She’s one of the least judgemental people I’ve ever known – a wonderful expression of Buddhist practice in the midst of very difficult circumstances.

I wrote Toni a ‘fan email’, and she responded quickly with just the same caring and friendly tone as I’d found in her book. We then connected on Facebook, which in a way has become an extension of her work, as her page attracted thousands of chronically ill admirers of her book, all seeking a connection with fellow sufferers and wanting to apply the Buddhist-inspired ‘practices’ in ‘How To Be Sick’ to their radically changed lives. Another page, also inspired by Toni’s work, has a much smaller membership and is very important to me personally. All of us in the group are struggling at times, and we all express so much mutual support and caring that it’s a beautiful experience – a kind of model Buddhist ‘sangha’ (spiritual fellowship) for people with chronic health problems. I’ve made some very, very dear friends through Toni’s work, and of course Toni is one of them.

When I first met Toni I wasn’t a Buddhist, although I did try to apply practices such as mindfulness to help cope with pain and anxiety. Now I think I am a Buddhist, albeit a secular one with an attitude towards this ancient ‘faith’ very similar to that in Toni’s book. Whatever her private, personal beliefs, her book doesn’t mention rebirth in a literal sense, for example. It’s a purely practical approach which can be applied to anyone’s life, whether they consider themselves Buddhist or not. Toni has helped me resolve more than one confusion about Buddhist thought, and is one of the people who have helped me to accept that I can try to follow the Buddha’s core teachings without a belief in anything beyond the material universe. I’m very grateful to her for this, too.

So I can safely say that she’s one of the teachers who, in recent years, has helped to change my life. Like her, I find refuge from my difficulties in the music of Mozart and Beethoven, and the love of our partners and pets – we already had those things in common. But I also find it in the friendship and support of people I would never have met without her – giving me the opportunity to give to others with similar struggles in life, and to receive from them too. And now I can also find refuge in the teachings of the Buddha, which Toni has helped to clarify for me, and who (in her words) ‘never claimed to be more than a human being. He found pain just as painful as you and I do. I take this as a reminder that the equanimity and joy we see in the many images of him are within the reach of every one of us’ (from ‘How to Be Sick’).

In September, Toni’s second book, ‘How To Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow’, will be published. I wish her all possible success with it, all the more so because I can only imagine how hard it must have been to write it while suffering with severe flu that never goes away. And I’m having to apply a little Buddhist equanimity to manage my own craving to read it! Meanwhile, here’s a link to Toni’s latest blog post, for any of my followers who haven’t discovered her regular ‘Psychology Today’ blog. Of her ’12 Tips’, I especially like No 2 (I know I’m in pain, I know I’m disabled, and that’s good enough for me); No 4 – which redefines the concept of work and usefulness to society; and No 7 – after all, where on earth would I and many of my friends be without the internet? Our hidden ‘culture of the sick’, unobserved by most of the rest of the world, has a vital and compassionate life in the world on our computers – and my, do we need it!

12 Tips from 12 Years Sick 

Thank you, Toni, for everything else you’ve shared with so many of us. My chronic illnesses are still difficult to manage, but you are one of my treasured guides on how to live with them easier. There are joys in life which I would never have discovered, if I hadn’t been nine years sick.