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 practicing 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 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 investigation – 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 the floor heart unraveling? 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.

10 ways to bring the outdoors indoors when you have a chronic illness

“The art of life is our constant readjustment to our surroundings”

Kakuzo Okakura

Nature is food for my soul.

There are some days however when even with all the will in the world I cannot or could not get outside because pain or fatigue levels were just too severe. I had to learn to find ways to bring the outdoors indoors.

I’m sure many of you will already do some of these but I hope you will find some new ideas with which to fill your home and possibly spend some of your time doing depending on your pain, mood and fatigue levels.

I filled my house with easy to look after plants and flowers. Wonderful scents, colours and shapes filled my bedroom and home. Succulents, cacti and peace lilies survived even my none green fingers. It’s wonderful to watch something grow, change and thrive even when we might not be. It also showed me that even though some days felt utterly monotonous there was still change happening around me.

not even I can kill this !

On a better day physically I had fun making terrariums. Again these are super easy to care for and a wonderful way to release some creativity. This is a very basic one but you can go as big and bold as you like! Here is my miniature rock climbing lady:

Sensory bowls. These are lovely and can follow the seasons or memories you would like to bring to life. Fill them with tactile beautiful objects. You can recapture the seaside with  seashells, fossils or sand. You could have an autumn dish filled with interesting finds – acorns, crisp coloured leaves or conkers. It can also be nice to add some drops of essential oil to the dish to add another element.

Rainbow makers. These are so lovely and unassuming. Hang a crystal in a window that catches the sun and your room will be filled with the magic of hidden colours revealed.

Art. I really enjoy original art and try every few years to save up and buy a piece. There are many galleries now which will allow you to pay monthly installments for pieces. Art inspired by nature is wonderful, I particularly like lino and mono prints.

Crafting. I find it really satisfying to create something whether or not what I produce is very good is by the by! You can craft things in rhythm  with the seasons from egg decorating at Easter, screen printing birthday cards in the summer  to making window collages with leaves in autumn or leaf inspired autumnal brooches. In winter you can make cards or wreaths at Christmas time. There are so many options and each activity can be graded according to pain and  strengths.

a screen printed card
a simple advent candle wreath

Growing vegetables! You don’t need a garden to grow simple vegetables and herbs. Chard is delicious and particularly easy to grow as are herbs, just a little window box on your kitchen window sill, mix in some sunlight and water and you’re away!

chard in an easy to reach raised planter

Books. I love reading books about hiking trails, adventures in the great outdoors and nature. I get to live vicariously when the world feels out of bounds. If reading is too difficult either with concentration levels or pain I found sometimes that audio books were a good option. Here are some of my favourites:

Sounds of nature and music. It is so easy these days to be able to treat ourselves to the sounds of nature whether it’s waves crashing against rocks or the incredible sounds of a tropical jungle. All we have to do is go on online and open our ears. I also love classical pieces which invoke natural scenes and the sounds of landscapes.

Bird feeders. I purchased a bird feeder that sticks to the window – they are fantastic!  From my bed I could watch the nuthatches, bullfinches and robins all coming to fill their beaks and bellies.

Nothing can replace having good health but these are some of the small ways I brought myself some comfort.  I wish you much love on your own journey to well-being

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.

Awe; our secret weapon in the quest for well-being

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We’ve all felt it, the moment as a child when the vastness and beauty of the night stars beheld you and momentarily stole your breath, the intellectual jaw drop the first time you saw the vision of our tiny blue planet as seen from space or the feeling that was all-enveloping when you summited a mountain and were given the gift of vistas below.

Such grand and vast examples may be what first springs to mind but feelings of awe can also be elicited by smaller events – the beauty of a tree as it is painted with the brush of autumn or the delicate light in a forest dappled with sun. As Aristotle once said, “in all things of nature there is something of the marvellous”.  Science too is taking note investigating awe and its impact on well-being and health. The Greater Good Science Centre (GGSC) at the University of California has recently published a white paper – The Science of Awe – and the results are fascinating.

But first what is awe? The authors at GGSC describe how awe experiences can be characterized by two phenomena: “perceived vastness” and a “need for accommodation”, the need for accommodation being when a stimulus exceeds our expectations in some way. Hence my young daughter’s first observable moment of awe. At four years old we were walking into the park, not unusual, except this time nature captured her attention  –  she noticed a single tree aflame with the reds, golds and burnt umbers of autumn, she stopped dead in her tracks and simply and beautifully exclaimed; “wow!”.

Awe – aka wow.

We have all hopefully experienced awe at some point in our lives and we know the scientific parameters of awe but how can it help you or me? Well according to researchers at GGSC there are both psychological and social effects.

They found that awe :

  • can create a diminished sense of self – meaning focus is shifted away from our own concerns
  • makes people more humble, “awe led to self-diminishment, which in turn gave rise to humility.”
  • expands the perception of time, which for the study participants meant they were then more willing than other people to volunteer their time to help others, to prefer experiential purchases over material ones, and reported greater satisfaction with their lives.
  • connectedness – awe helped people feel more connected to other people, and to humanity as a whole.
  • encouraged a positive mood and well-being
  • linked to better physical health – awe promoted healthier levels of cytokines. High levels of cytokines are associated with poor health and disease, like type 2 diabetes, heart disease, and depression
  • increased life satisfaction and decreased materialism, participants who recalled an awe experience placed less value on money than did participants who recalled happy or neutral experiences, and viewing awe-inducing images reduced the effort people were willing to put into getting money

Awe – it’s pretty awesome!

So how can we help manifest more of this marvellously magical mood? One word – nature. Awe is when nature puts her best dress on and dances like no-one’s watching. She is our invitation into awe and available to all, the sick and the healthy. So much so that researchers found using virtual reality to showcase awe-inspiring landscapes yielded many positive results – participants did not have to physically be in the landscape to benefit from it. From an occupational therapy perspective as-well as a personal one, I find this very exciting. It also drew my mind back to the  ‘five ways to mental well-being’ from the government office for science, in particular, their call to ‘take notice’ and to ‘catch sight of the beautiful’.

I do however feel most alive and find most meaning when I am physically out in nature, even if I am simply sitting in the garden. Having a chronic illness means that sometimes the closest I come to living life on the edge is using my mobile phone in the bath but I can and do experience awe when I am able to take a slow stroll in the woods near my home – when trees tremble with the first touch of autumn and leaves float down like confetti welcoming me into their home, then like a small child I am in awe. So what are you waiting for? Bend your heart towards nature and let awe welcome you home.

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.

The outdoors – medicine for the mind

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In my mind’s eye, I see an image of the sun’s rays rising to meet a masiff. Hungry shafts of dawn-light falling on granite blades of mountain and moss. I too am eager to set foot and boot and bone on it and in it, to set my senses on nature. It is in nature that I feel truly hushed, seen, found and grounded.

Like the solid timeless rocks of mountainscapes which resist erosion so well, so too can we, by being in nature, resist the ever-increasing pace and force of modern life which so often seems to leave us wanting and for those with a disability frequently discriminates against. Yet an illness or disability does not have to separate us from our inheritance.

Walking is my axis mundi. There is a freedom on the trail, labels disappear and job titles are tossed aside, we are hikers, explorers, adventurers, equals. I haven’t always been physically able to take part in hiking, however. Between the age of 28 and 35, I spent most of my days in my home crippled by excruciating pain from which I was told I would never recover. The 500 pain killers I took each month only served to give me a window of perhaps two hours a day with which to spend time with my young daughter and husband. There was no pressure to ‘make the most of it’, honestly!

So what to do in times like this? Well, sometimes when we are unable to venture out into nature we need to bring the outdoors indoors. I started to live vicariously through artists, writers, and musicians. Some would argue, as the narrator in Proust’s, ‘the prisoner’ espoused that, “the only true voyage of discovery…would be not to visit strange lands but to possess other eyes, to behold the universe through the eyes of another, of a hundred others and to behold the hundred universes that each of them beholds”. I don’t completely agree with this but it did temporarily satiate the desire to escape my restrictive reality.

However, when, as often happened, pain levels were too high to read or even listen to an audiobook I found simply gazing out of my bedroom window onto the ever-changing scene of woodland and wildlife brought me to a place of momentary peace and restoration.

Fast forward a few years and with some luck, lots of hard work and perseverance I healed from that illness and spent 3 lovely years walking locally, wild swimming and easing back into the world. Yet after planning (to attempt) a long-distance hike I’ve found myself again diagnosed with another painful chronic illness – none of us has a monopoly on health I angrily told myself. So now I find I’m falling back on my occupational therapy training adapting activities, grading them, finding a way to incorporate my meaningful occupation of walking in nature, into my current circumstance and with some mindfulness, creativity, and patience, like John Muir counseled, I am able to make sure a few of the paths I take in life are dirt.

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.