ACT & Grief

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On my 40th birthday, I thought to myself, “Maybe life really does begin at forty!” I was on top of the world: after 20 years of writing (resulting in five unpublished novels), my first book was finally about to be published; I loved my job, and my career was heading off in new and exciting directions; I had good health, a strong marriage, and wonderful friends. But all of that paled in comparison to the greatest joy in my life: my beautiful baby boy, Max, who was then eleven months old. I have never known anything like those overwhelming feelings of love, joy and tenderness that a parent feels towards a child.
Like most new parents, I thought my son was the most beautiful, intelligent baby in the whole wide world – and I often fantasized about his future life. He would be so much smarter than me in every way - and unlike me, he would excel at sport, be super-popular with all his school mates, and a big hit with the girls when he got older. Then he would naturally go on to university and develop some high-power career. Ahhh, the wonders of fantasy-land.
By the time Max was 18 months old, my wife and I were concerned that he was lagging behind in his developmental milestones. He wasn’t walking, and he had very few words. A paediatrician assured us he was just ‘slow’, as ‘boys often are’ – and told us not to worry. But 3 months later, our concerns had grown. Max did not know his own name; he had very few words, and seemed to understand very little of what we said to him; he often seemed ‘spaced out’ in his own private world; he still wasn’t walking; and he had started some odd behaviours, such as rolling his eyes, strangling his teddy bear, grinding his teeth, and shuffling up and down the floor, over and over, staring at the cracks and lines. So we decided to get a second opinion. The new paediatrician was very concerned and arranged for a thorough assessment. On November 16th, 2007, just five days before my beautiful baby boy turned two, he was diagnosed with autism. My world just crumbled.
‘Autism’ is one of those words like ‘cancer’ or ‘AIDS’: when you hear it, you can’t help but feel a slight shudder. And when you hear it as a diagnosis applied to your own child, it’s like someone sticking a knife in your gut – then twisting it around – then slowly pulling your intestines out through the wound. I cried, sobbed, howled; felt pain like I had never known. I’ve broken bones, torn ligaments, had loved ones die - but this pain was in a league all of its own.
The word grief comes from the Old French grève, meaning a heavy burden. People often talk about ‘grief’ as if it’s a feeling – but it’s more helpful to think of grief as a process in which one experiences many painful feelings related to loss. Elisabeth Kubler-Ross is justly famous for writing about the 5 stages of grief: Denial, Anger, Bargaining, Depression, Acceptance. However, she never intended this to be a definitive sequential classification of the grief process. Just before she died, she wrote that these stages “Were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” It’s important to keep that in mind. I am going to be talking here in generalities; nothing I say will fit all people in all situations.
So what is the ACT take on grief? Well:
1. Accept what you are feeling. You may feel anything from shock to guilt to sorrow to anger to despair and hopelessness. Of course in some situations, you may also feel relief – for example, when someone has died peacefully after a long period of extreme suffering. Whatever these feelings are: notice them, name them, breathe into them, and make room for them.
2. Accept that at times you will be overwhelmed. In the early stages of grief, those painful feelings are often like a tidal wave; they rise up and bowl you over and carry you away. Often this will happen before you are aware of it. And that’s okay. There’s a time and a place for just allowing this to happen; to let yourself be engulfed by the wave. The good thing is, that wave will never actually drown you - even though it feels like it will. And you can always take the observer perspective: ie ‘take a step back’ and observe yourself feeling overwhelmed. This will let you ‘see’ that the waves may knock you around but they cannot harm you.
3. Learn to anchor yourself. Over time, the waves start to reduce in size. They’re still big, but they’re no longer tidal waves. Sometimes they’ll knock you over. Sometimes they won’t. To anchor yourself when these waves hit, you can practice a very broad focus mindfulness exercise: notice where you are & what you’re doing; notice what you can see, hear, and touch; notice what you are feeling and see if you can name it. Maintain a broad awareness of your surroundings, your actions, and your feelings simultaneously – and this will usually keep you grounded, until the wave subsides.
4. Connect with your values. What do these feelings tell you about what is important to you? What do they reveal to you about your on heart?
5. Here’s a powerful question for anyone grieving. Suppose you could have a choice. Option one, you never have to have these painful feelings ever again - but it means you never get to love or care about anyone or anything. Option two, you get to love and care about all sorts of people and things – but when you lose what you care about, you will feel intense pain. Which option would you choose?
6. Develop self-compassion. Be kind to yourself. If someone you loved was suffering, what sort of kind, loving things would you say and do for them? Try talking to yourself and caring for yourself in this manner.
7. Be on the alert for unhelpful stories. Common ones include: The ‘My life is over’ story; he ‘I’ll never get over this’ story; the ‘I can’t bear it’ story; and the ‘It’s my fault’ story. Also watch out for the ‘Should have done this/ shouldn’t have done that’ story, which can easily grow to epic proportions. Other lifeless stories include anything that begins with the words ‘If only’ and anything that contains the word ‘unfair’. (It’s true that life is unfair, but there’s no vitality in buying into that story). At times these stories will hook you up and reel you in; you can’t avoid that. But once you realise it, you can unhook yourself by naming the stories, thanking your mind, and letting them go.
8. Find vitality within your pain. Your grief tells you two very important things: a) you’re still alive, and b) you have a heart. Tune into your heart: connect with your values and carry on with your life, doing the things that are important. And take your grief with you, carrying it gently and carefully, as if it were a child in your arms.
9. Consider how you can grow from this experience. What might you learn about forgiveness, compassion, letting go, acceptance? How might your own experience benefit others that you care about? Do you notice your heart opening towards others? Kelly Wilson, one of the founders of ACT, talks about how your own suffering in life enables you to develop an ‘emotional stethoscope’ - with which you can clearly listen in to the pain in others’ hearts.
10. In many situations, a grief ritual is useful. Make a time and place in which to feel your pain fully: to open up, and embrace it, and let it be. When dealing with the loss of a loved one, this might be a regular ritual that goes on for weeks or months; you can make it as simple or elaborate as you like – with candles, photos, prayers etc.
11. Remember the ancient saying, “This too shall pass.” Remind yourself of this, when the waves are pounding against you. Over time, the waves will get smaller, and the intervals between them will grow longer. (Although even years later, tidal waves can suddenly appear, taking you by surprise.)
12. Take it easy; rest up; take the pressure off. Grief consumes energy so you’ll often need to cut back on what you do, for a while. But that doesn’t mean giving up on life. Keep acting on your values – just scale down the effort so you look after yourself adequately.
13. While acknowledging what you have lost, also make sure to appreciate what you still have.
I can’t claim to have followed these guidelines perfectly in the last two months. Sometimes I ran away from my pain - tried to distract myself by going to movies, or wolfing down double-coated chocolate Tim-Tams by the packetful. This didn’t work very well though (and I gained a few kilograms of lard). At other times I fused with some pretty horrible stories, as my mind conjured up stark gloomy images of Max’s future: my little boy - impaired, disabled, rejected; an outcast of society. Ahhh, the horrors of fantasy-land. At times I got completely consumed in my anger at the unfairness of life. And at times I took out all my pent-up angst on my wife – as if she didn’t have enough to cope with already. One of the biggest mistakes I made was not paying enough attention to point 12, taking it easy. I went ahead with an ACT workshop in Melbourne about a week after Max’s diagnosis – and barely got through it. In retrospect, I should have cancelled it. I spent the entire two days fighting back tears, and was exhausted afterwards.
However, having said all that, I have pretty much followed these guidelines a lot of the time, and now I am mostly in the acceptance stage. The waves are smaller, and sometimes disappear for days at a time. (Although they can quickly resurface when I see him alongside kids of his own age, and my mind starts comparing and judging.) Point 13, above, seems one of the most important: to appreciate what you still have. A friend of mine lost her young daughter to septicaemia, and has been an absolute inspiration to me: in the midst of her unimaginable pain, she has still managed to find joy in life and appreciate the family that she still has.
Max is now enrolled in an intensive behavioural therapy program, and the future is not yet written. When I let go of all my stories about who he could be and should be, when I come back from the future to live in the present, when I love him as he is without any expectations, then the sweetness of those moments is truly wonderful. And as Kahlil Gibrahn wrote in The Prophet, “The deeper that sorrow carves into your being, the more joy you can contain.”

Comments

Thank You

Wow, amazing. Thank you for sharing such an inspirational and moving write up. I feel not only more informed after taking the time to read this but a great feel for the softer side of the info thanks to your sharing your experience. ~Scott

Thank you

Thank you for sharing your personal story and for so beautifully applying the core of ACT to such a difficult, daunting, and overwhelming topic. On both personal and professional levels, I thank you.

Eliza

thank you

Russ,

This struck a strong chord with me. Thank you for living and embodying the ACT Process's