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.

The Gift of Impermanence

Here is my piece featured on http://www.tinybuddha.com

 

“If you argue with reality, you lose, but only 100% of the time.” ~Byron Katie

I love this quote. Ironic, really, because when I first read it I was furious—furious with my reality and anyone who encouraged me to be accepting of it. In my mind to accept chronic illness was to accept defeat.

I had just been diagnosed with fibromyaglia, an incredibly painful condition that had me bedridden most days and unable to care for my then two-year-old daughter, never mind myself. My home became filled with carers, aids, and adaptations.

Rather than starting a new career as a newly qualified occupational therapist, I was struggling instead with the fear of lifelong pain, the shame of unemployment, and the guilt of not being the active mother I so desperately wanted to be. I was in no mood to accept such circumstances in life.

So how did I move from a position of resistance to one of restoration? How can we find some wiggle room in situations that may feel utterly immobilizing? Well, chocolate and cake help, but what really started creating space for growth was the Buddhist notion of impermanence and the insight, acceptance, and mindfulness that flowed from that.

Impermanence is a universal law; every single thing is in flux. Take the British weather, for example. We know it’s unpredictable and always changing, so when we go on holiday here we often take boots and raincoats as well as sun cream and hats! We see this same principle mirrored in ourselves as we age. I remember a time when I was washing dishes and, in looking down at my hands, was taken aback at how much they resembled my mother’s. Soft lines and delicate wrinkles that had found a home on my skin stared back at me.

The deep realization that not a single person or thing is fixed and ultimately impermanent can cause some sadness and anxiety, but within this, there is a freedom and hope.

The Glass is Already Broken

Someone once asked a well-known meditation master, Ajahn Chah, in a world where everything changes, how can there be happiness?

The teacher held up a drinking glass and with much compassion explained, “You see this goblet? For me, this glass is already broken. I enjoy it. I drink out of it. It holds my water admirably, sometimes even reflecting the sun in beautiful patterns. If I should tap it, it has a lovely ring to it. But when I put this glass on a shelf and the wind knocks it over, or my elbow brushes it off the table and it falls to the ground and shatters, I say, ‘Of course.’ When I understand that this glass is already broken, every moment with it is precious.”

When I read this and really let it sink into my bones, slowly, gently, something shifted. Though my ill health had initially caused so much loss and sadness, I was able to move from a place of “Why me?” to a “Why not me?” It cooled my rage, and the first shoots of acceptance began to show.

We will, after all, all experience pain at some point in our lives. It is part of the package of being human. Accepting this can help ease the emotional suffering sometimes enmeshed within pain and encourage us to truly embrace and appreciate life’s pain-free moments, the pockets of joy.

Saying Hello to the Here of Our Circumstances

There is a wonderful story in Pádraig Ó Tuama’s book, In the Shelter, about a photojournalist who was returning to a tribe in Papua New Guinea where she had lived as a child. Within this tribe, there was no word for hello. Instead, upon seeing someone you simply said, “You are here” and the response being equally clear was “Yes, I am.”

Isn’t that wonderful? Can we say hello to the here of our circumstances? No matter how dire or unfair they seem, if we can we are better able to accept them. Acceptance is not defeat. It is an acknowledgment of the truth. Once we can accept where we are we can move forward with greater clarity, courage, and strength. It’s an opportunity to become unstuck, to experience well-being in the midst of our symptoms and well-being beyond our symptoms.

The Power of Mindfulness

Another thing that helped me to get unstuck was mindfulness, which means conscious awareness of our moment-to-moment experience, without judgment. When I began to tentatively practice mindfulness each day I soon realized that my experience of pain was never static. It changed in its intensity and location and ultimately had many flavors. Sometimes it was a stabbing or burning sensation, at other times a dull ache. I could observe how it felt in different parts of my body and how, like waves, it had a tendency to rise and fall. I was shown how my experience of chronic pain was, like the weather, ever-changing.

I was finally able to whisper a faint hello to the pain and the emotions around it, to the here of my circumstances and the practice of listening became a sort of self-hospitality. I could welcome what is just as I would welcome a friend.

Within this, I also saw the flip side of impermanence, the gift that nothing is set in stone. I was told I would always be in constant pain, but I knew my pain experience was fluid. I had occasional respite from it, even if it was just one hour a day, and with new pain knowledge and Buddhist principles, I was learning to emotionally disengage from it.

Seven years after my devastating diagnosis I actually recovered from the pain of fibromyalgia. That was over three years ago, and I have never had to take pain medication for it since, but that’s another story.

As it stands I’m currently learning to navigate life with another painful chronic illness—hello, broken glass—but I’m much better able to live with it, sometimes even thrive despite it, now that I understand the universal truth of impermanence and have nurtured the willingness to say hello to the here (albeit at times begrudgingly).

If a black mood does settle on me I try to take myself out for a mindful meander in nature.

When I can be still and behold a whirling turn of birds, twisting and twirling like leaves caught in a breeze, it cuts through the chatter and noise, frets and fears. It’s a sweet balm for life’s concerns. Mindful moments like these, when there is peace in every breath and joy in every view, are sacred to me. They remind me that there is so much beauty in the world to balance the pain. It enables me to appreciate the present moment and in doing so helps to create the chance of a promising future.

Happiness is, after all, an inside job.

Practicing mindfulness, appreciating nature, and understanding impermanence are some of the things that have helped me—and could help you too. When we embrace what is, enjoy what we can, and accept that all things inevitably change, peace becomes possible.

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.