What Abi Taught Us (13 page)

Flicking through his memoir
A Grief Observed
more recently, I was struck by C.S. Lewis's description of the happiness he and his wife, Joy, found together even ‘after all hope was gone'.
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It struck a chord with me and sent me scuttling off to re-read old lecture notes from one of my professors who described the power of hope in the context of death and grief. Chris Feudtner is one of those professors a student never forgets. A pediatrician at CHOP, the Children's Hospital of Philadelphia, Feudtner told us how he uses psychological hope theory in his work in the children's oncology department. I remember wondering
what hope could possibly be present in such a place. Then he relayed to us Mason's story.

Mason was three months old, and had already been in the hospital for two months when Feudtner met him and his family. Mason had a metabolic disease, and his parents had been told a week earlier that it was terminal. Feudtner recalled the moment when he asked the parents, ‘Given what Mason is up against, what are you hoping for?' This, at first glance, seems like an absurdly insensitive question. What were they hoping for? For Mason to live, obviously, but they'd just been told that wasn't going to happen. As far as they were concerned, all hope was gone.

But the rest of the story that Feudtner relayed that day gave us, his students, a remarkable and unique insight into the power and nature of hope. Until Feudtner became involved in Mason's case, the hospital team's goal was to get the baby to put on weight. But after careful coaxing and patient discussion with the parents, this remarkable doctor managed to discover that their greatest remaining hopes for Mason were to stop further testing, take him home, have him baptised, and for him to live what time he had left at home among his family. So that's what they did. Mason went home with his family that day; he was baptised and died peacefully three weeks later. A year later, Mason's parents went on to have twins.

Chris Feudtner described how inquiring about new hopes palpably changed the mood in the room for those parents, and the course of Mason's treatment. ‘We had confirmed the worst news for parents but left them with hopes to look forward to. Pediatric palliative care is not all sad, there are moments of joy and celebration as to what it means to be alive,' he explained.
This experience had a huge impact on his career, which now sees him work with patients and their families around the notion of hope, even in the direst circumstances. ‘There are so many parents who feel lost because once the big hope was shut down nobody thinks to nurture their other hopes. In the face of no curative options, parents need a new goal to strive for.' He now works to ensure that parents at CHOP get the chance to collaborate in the decision-making around their children's outcomes by asking them quite simply, ‘So, what are you hoping for now?' Answers to this question demonstrate that hope isn't a single entity—humans don't have just one hope, but a collection of smaller hopes. In the face of even terrible news, of something as final as death, other hopes remain or emerge; the process of hoping endures. Identifying these hopes is important.

In the immediate aftermath of the girls' deaths my focus quickly became about reducing additional stress and narrowing my priorities and expectations. Setting myself a new goal of surviving, which started with just aiming for ‘mainly functioning', I narrowed the goal posts to accept that any day I got out of bed and went through the motions of vaguely functioning was an achievement. My goals had shifted overnight and, while it was easy to think that all hope had gone, I still had other life goals and priorities.

Knowing what it was that I was aiming for (having a goal, however small) helped me work out which actions to take
and changed my definition of success. I had forgotten about Feudtner's work at the time, but looking back I wish someone had explicitly asked me to consider what my new, smaller hopes were.

There has been a great deal of research into the power and importance of hope for mental health over the last decade. For example, psychologists commonly recognise that hope counteracts mental illness and that hopeful individuals have a greater sense of meaning in life, and generally accomplish their goals more frequently, as well as doing better academically and in sports performance.
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Rick Snyder and Shane Lopez, the academic partners leading this body of research, describe how by generating the motivation (the ‘will power') and pathways (the ‘way power') to get where we want to go, hope helps shape our lives and defines our goals. Very often the presence of hope makes all the difference between coping and depression.

Having goals is important; the absence of a goal is almost like depression—feeling listless, and lacking interest and a feeling of control over our actions. These are not goals like meeting deadlines; they're more about identifying what's important to you—the things you value. Doing so helps you focus where you put your energy, time and commitment; the things you chase, and the issues and complaints you let go.

What matters now may not be the same as what mattered to you before the death of your loved one. As one woman explained to me, ‘Before my daughter's death I was obsessed with how the house looked and having everything in its right place. These things seem utterly irrelevant now.' Similarly, I read somewhere about a woman who, after the death of her husband, decided that what mattered now was staying healthy so that
she could raise her children. She had previously cancelled two scheduled mammograms, but now she made sure she attended the appointments. Her motivations had changed, prompting a different course of action. Identifying your remaining or new, smaller hopes can be a worthwhile exercise.

Exercise in identifying hopes

Answering this question helps to identify the other, remaining hopes in life, and to in turn guide your decision-making. It helped me realise I did still have hope—multiple hopes, in fact. I hoped that we'd manage to survive this tragedy; that we'd stay sane; that we'd manage to remain a normal connected family; that my boys would be close friends and together cherish their little sister's memory. Identifying these other hopes has helped guide my decision-making over the past months.

Mindfulness

There's been a great deal of talk about mindfulness in recent years. It is a word that gets bandied about with good reason: mindfulness is a powerful force. Greater mindfulness has been shown to be associated with a host of desirable outcomes, from reduced stress, anxiety and depression, and increased longevity, to better physical health (including greater immunity and reduced pain), improved relationships and greater wellbeing.

Like resilience, mindfulness is a multi-dimensional, dynamic construct. Put more simply, there are many elements to mindfulness. While my academic training introduced me to the concept of mindfulness, it wasn't until the girls died that I truly came to understand its usefulness and particularly its relevance to grieving. Mindfulness is described in academic terms as ‘the awareness that emerges through paying attention on purpose, in the present moment, and nonjudgmentally to the unfolding of experience moment by moment'.
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In real life, that translates as being able to intentionally focus our attention, to fully attending to the present moment and successfully refraining from being easily distracted, and letting our thoughts wander aimlessly. Practising mindfulness is good for calming and focusing a racing mind. While mindfulness sits at the core of Buddha's teachings, it is neither a belief, nor an ideology, nor a philosophy. Rather, explains Jon Kabat-Zinn, Professor at the University of Massachusetts Medical School, there is nothing particularly Buddhist about it. ‘We are all mindful to one degree or another, moment by moment. It is an inherent human capacity.'
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Although the best way to boost mindfulness is by developing a regular meditation practice (historically, mindfulness has been
referred to as ‘the heart' of Buddhist meditation), it doesn't have to involve meditation; we can all be more mindful in our everyday lives. In this sense, two types of mindfulness are recognised: formal mindfulness practice, which involves daily meditation and breathing exercises; and informal mindfulness practice, which involves bringing mindful attention to all aspects of our day-to-day lives. This means making an effort to be aware of our thoughts, emotions, feelings and the environment on a moment-to-moment basis, and to keep our minds focused on the present rather than wandering aimlessly.

In the work I do with organisations, I often find the best way to introduce the concept of mindfulness to a new audience is to consider it as the opposite of living mindlessly. Instead of running round like headless chickens, with our thoughts and attention scattered everywhere, living mindfully requires us to be aware of our thoughts and live our lives more intentionally. That doesn't mean we can never blob on the couch and zone out to watch TV again, just that we are consciously engaged with what we are choosing to do in our lives.

Mindfulness is a supportive tool for helping you live and in this sense it follows that it may be helpful during bereavement. Mindfulness will not make your grief disappear—no tool suggested in this book will do that—but it does ‘provide a greater basket for tenderly holding and intimately knowing' pain.
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In this way, mindfulness helped me accept my grief by allowing
me to focus my attention on what I felt in any given moment, and to acknowledge that feeling in a non-judgemental fashion. In fact, it was only through grieving that I finally understood the non-judgemental aspect of mindfulness. To explain: instead of thinking ‘Oh shoot, I'm crying again, in the middle of the supermarket, I'm such an idiot that I can't control my emotions, so weak for not being able to hold back the tears,' a more mindful me coaxed myself to think, ‘Wow, here I go crying again, that's okay, it's just tears, the tears reflect the immense sadness I feel at Abi's loss, that's okay, it's just what they are and what you are feeling in this moment doesn't mean it will be forever, it's just here, right now.' Non-judgemental acceptance of the moment-by-moment experience? That's mindfulness.

Mindfulness also helped me overcome the fear of losing another child that threatened to consume me in the months after Abi's death. As we have seen, people who experience traumatic life events they could not control or prevent often report an increased sense of vulnerability. In the weeks immediately after the accident, as people came to the house to say their final goodbyes to Abi and surround us with love, a trickle of stories penetrated my protective cocoon. I heard of one friend who'd lost two siblings. Unthinkable. His mother had been fighting depression ever since. Another relayed the tragic story of his brother's loss, and while I'm ashamed to admit that I have forgotten the details of that death, I vividly recall reeling with dread at a follow-up comment describing how his other brother had been missing for many years now, presumably gone AWOL as a result of the tragedy. The thought that there might be more tragedy ahead tortured me. My knowledge of statistical probability didn't help: I was well aware that being unlucky
once did nothing to reduce the likelihood of it happening again. Probability doesn't work like that. Every time I thought about it, my head swooned and I felt nauseous.

Looking back on it, I know that dealing with that vulnerability was one of the toughest challenges. To make matters worse, these were the months when our eldest son passed his driving test and was let loose on the open road. Unaccompanied. Oh, the agony. I knew I couldn't keep him back, and that worrying wasn't going to reduce his (and my) vulnerability. The only answer was mindfulness. And I found that continually drawing myself back to the present moment worked. Is it happening now? I'd ask myself. No, I'm fine, he's fine, we are all fine. If it happens, I'll deal with it then, but for now I'll keep in the present moment and deal with life experience as it unfolds before me. In my most anxious moments, this type of informal mindfulness and mindful breathing exercises like the ones set out below were the only things that kept me sane. Some of the new meditation apps, such as
1 Giant Mind
or
Headspace
, are also a good way of getting into the habit of meditating. These apps offer guided meditations which can help restore peace to the mind, and can be used very easily—even in the office at work (with headphones) or in the car.