How to be with the suffering of loved ones

forest-light

Here is my piece as featured on
http://havingtime.com/

“We are not the survival of the fittest. We are the survival of the nurtured.”

– Louis Cozolino

I’ve written before about what helps me to find peace and equanimity with pain and chronic illness. But what happens when it’s not ourselves but our child who is ill or struggling with life? When it is they who suffer and cry out in pain?

My daughter is currently being assessed for Ehlers Danlos Syndrome, POTS and Hypermobility Spectrum Disorder. Her joints regularly subluxate, she often comes home from school limping and can  struggle with the simplest of tasks. On top of this she also experiences intense fatigue and chronic headaches. There is no cure for what she is being assessed for, though physiotherapy can and does help, and yet every single day she amazes me. Each morning she gets up, goes to school and works incredibly hard when I’m sure she would just rather stay in bed. She cares for her friends, for nature and still manages to have the energy to argue with me! Ah teenagers….

When this illness was first mentioned however it absolutely gutted me. Perhaps it’s because I know how undeniably hard chronic pain is. There is no unsubscribe button. It’s invisible and can be tricky to downright exhausting to get the support you need. It is neither the future nor present I would have wished for her. But perhaps, like my experience of chronic illness, it will strengthen her and develop her in ways I can’t even imagine. One can only hope.

It’s ironic that to be in a family is to be constantly wounded; we love deeply and hurt deeply.  So when sadness does visit my door or fear makes itself at home I try and see it as a sign that I need to pause, breathe and  reconnect with myself.

These feelings are perfectly normal, a part of life and there are a number of small practices that help me to stay balanced – from living in the moment and being out in nature to practising gratitude. But I want to give you something practical –  a small offering that if I remember to do helps me navigate emotionally turbulent waters. The practice is a meditative exercise called RAIN. It has not only enabled me to meet my suffering with love but has helped transform it into self compassion.

Rain is an acronym for:

Recognize what is happening

Allow the experience to be there, just as it is

Investigate with interest and care

Nurture with self-compassion

When you feel the heat of a powerful overwhelming emotion or situation take some slow deep breaths in through the nose and gently out through the mouth. Gradually let your breathing return to normal and begin the first step of rain.

The R is to simply recognise what is currently happening. Are you feeling the weight of worry? Is the squeeze of stress tight in your chest? Recognise any thoughts, feelings and sensations that are present. When we are able to recognise that we are caught in suffering it enables us to hit the pause button and move forward from a wiser, friendlier position.

The A is to simply allow. Allow the thoughts, feelings and sensations to be there, we don’t have to control them or suppress them. This can be tricky at first. As humans we are so resistant to feeling any sense of  discomfort. We withdraw, constrict and  blame to try and make ourselves feel better but there is a great freedom to be found in simply allowing, even just momentarily. So for now take deep, gentle breaths and say to yourself, “okay this is how it is right now”.

The I is for investigate – take a brief, kind and curious look internally. What stories might you be caught up in? Are you terrifying yourself with future scenarios that have not yet happened? What core beliefs underlie your feelings? That life should be different? That you aren’t going to cope? Most importantly how does this feel physically in your body when you are scaring or criticising yourself? Gently explore from your head to the tips of your toes and see where there might be tension, pain, heaviness or unease. What do those parts of you need? What would make them feel a little better?

This leads on beautifully to the N of rain which stands for nourish and non-identification. Tara Brach, a wonderful meditation teacher and psychologist, has a lovely practice I regularly use. She suggests putting your hand lightly and tenderly on your heart (interestingly this has been shown to soothe and calm the amygdala). Turn towards yourself lovingly and as Tara suggests sense the possibility of offering yourself what is most needed. Perhaps some caring words such as, “it’s ok I know this is hard, I care about you, I love you”. Maybe you could imagine a loving relative from your past soothing you or perhaps you could picture a beloved pet offering you affection.

 

How does that feel? Many struggle at first with offering themselves love and tenderness, I know I did. Perhaps it feels a bit silly or maybe you don’t believe you deserve love but I can’t think of a kinder thing to do for ourselves and others than be genuinely and lovingly present with our suffering.

When I was able to do this practice I stopped identifying as someone who was suffering alone. I was able to connect compassionately with the millions of other parents around the world whose children may also be unwell and in pain. I could let go just enough to stop identifying with worry and rest in the awareness that I was caught in a spiral of fear. Fear that I could observe.  It gave me some much needed breathing space. Most importantly I was then able to be truly present for my daughter. I could authentically offer her my peace, my smile, my time and my hugs.

 

So what do you do when you hear your child may have a chronic illness? When you make peace with your own persistent pain but are left in a heap on floor heart unravelling? You find peace when peace is scarce, you love, you hope, you cry and you pray, you put the kettle on and maybe pick up some litter. You just keep breathing.

Claire Marsden @occulife

I’m a qualified occupational therapist with a passion for nature, mindfulness and well-being. I have a painful chronic illness that I’m learning to navigate life with, my second after recovering from a previous illness three years ago. I guess I’m a bit of an expert at living life with ill-health! I hope my thoughts will be of some use to people on their own journeys to well-being.

12 Comments

  1. I love the acronym RAIN and can even help apply it in the classroom for my students to use. As for the struggles of both you and your daughter, I wish many days of comfort and happiness. Resilient you both are it seems!

    Liked by 1 person

  2. Claire,
    This really helped me~ my son’s congestive heart failure~ leaves me feeling at times like I am going to start screaming and not be able to stop~ thank you for helping me with things I can do~ that I never thought of~ thank you for sharing about your daughter~ you are both in my prayers~ I loved what you wrote. Catherine

    Liked by 2 people

  3. I love the rain acronym.
    Also, sorry to hear that your daughter has EDS. I have a diagnosis of POTS too, it was the one aspect to FM too far that led me to seek ‘proper help..
    I’m still crediting you with being the one who woke me up to change.. x

    Liked by 1 person

  4. Hi Claire – I am an ex nurse and I too have EDS, POTs and chronic pain….and have a teen daughter also diagnosed, so I know too well how hard it all is. I’m so pleased to find your blog through the CIB facebook group!
    I love “RAIN” – you write it with honesty and compassion that so many of us will identify with. It is 10 years since I was medically retired and I still struggle with self care, love and tenderness. When my kids (now 23, 20 and 16) all started experiencing problems from subluxations, pain, migraine to depression, anxiety and self harm, I felt incredible guilt. Afterall this is a genetic condition that I have passed on (the boys, the older two, are not formerly diagnosed)…..but now I try to concentrate on the fact that we know so much more about the condition than when I was young and I constantly try to keep myself updated. They should be able to learn how to live the most healthy lifestyle (in theory!!!) – but as young adults they are a law unto themselves!
    Hope you don’t mind but I shared this to my regular PainPalsBlog feature “Monday Magic – Inspiring Blogs for You!”, Claire x

    Liked by 1 person

    1. Ah thank you for such kind words. Sorry to hear about your experiences too though. I sometimes think we are in a perfect position to help them with pain and in learning to live well with it but of course we get our down days too. Self compassion is so important xxx

      Liked by 1 person

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