Ciara Jean Roberts, Holistic educator, yoga teacher, naturopathic nutritionist

Published in JHH 18.2-Frontiers of self-care

The wisdom of age hopefully gifts us that we learn to deeply trust how our body speaks to us. Sensation is information. We don’t need to conform to anything other than our own resonance. And that will be an unfolding unique to each person. Autonomy and agency are so important.

I was diagnosed at the tender age of four years old with a rare and progressive form of glomerular nephritis. This followed a strep throat infection, unusually localising to my kidneys. And was a grand initiation in the very early part of this lifetime. The adventures indeed with my kidneys. Even though they only functioned for me in the first 14 years of my life. They remain a part of me. Wise teachers for me in this lifetime.

My parents took the decision to move to Zambia, from Ireland, soon after this diagnosis. Shielding me from the fact it was progressive and would eventually mean in 10 years time or so, my kidneys would fail. How lucky for me to have come into a family with these wise guardians. Their parental wish to nurture their youngest daughter. To help her thrive. For this decision, I remain eternally grateful to them.

Zambia lives in the pulse of my blood.

It ignites hopefulness and wonder and has sustained me through times of great intensity. Like the renewing water within one’s inner well. There is a magic to Africa. Its heat. Its magnificent rainy season. When all that was dry, sprang back to hydrated and dewy life. Its abundance. Its wild nature. We had banana, pau-pau, avocado and lemon trees in our garden.

These formative years also introduced me to a veritable naturopathic approach. Not that I would have had such vocabulary for it then. I was raised by a mother whose mother, and her mother before, had the connection to food and natural ways in Ireland. An onion poultice on the back of the neck for headaches. We were never given painkillers. My mother taught us kids yoga in our home. An early introduction to this ancient technology. A seed sown that would harvest in adult life.

Every few months, my mother and I would fly from Lusaka to Johannesburg to see Professor Thompson, a paediatric nephrologist, yet with a truly holistic view. He advised limiting refined sugars, plenty of good hydration, lots of vegetables and not too much salt. It was a resonant match for the wisdom passed down to my mother. We attract what is familiar. Her interest in nutrition, spirituality and yoga, set a scene for who I am today. Life brings us what we need.

I often reflect with a gladness in my heart, that I had these foundational experiences. Woven into my very fabric. Without them, the stark and highly medicalised, at times coercive, approach of renal medicine within the NHS would have been the sole route to wellness.

By age 14 we had moved to the UK as a family. The practicality of my father, who knew we would need the western approach for what was to come. Me officially diagnosed then with renal failure. The following seven years, relying on thrice weekly haemodialysis treatments. Profoundly formative years from 14 to 21. Dialysis is no like-for-like replacement for the splendour of our kidneys. I took it all in, eventually setting up the machine myself and doing my own needles to connect. The inner physician awakening. It didn’t occur to me this would limit my capacity to live fully. I played on the tennis team at school, was deputy head girl and really just a teenage girl. Not always easy. At all. Fluid and dietary restrictions. Feeling pretty unwell by the time the next dialysis session was due. One remains in renal failure. Dialysis gets you by. So the rest – really is up to you.

I had my first kidney transplant at 21. Soon after graduating. From a cadaveric donor. A reminder how truly connected we all are. A soul connection of one human to another. Of him to me. Beyond linear time. A person I never knew, yet who became a part of me. He died of a brain aneurysm.

One needs to develop a toolkit that is honed and specific for one’s own unique circumstances. We can’t generalise. It’s too nuanced. It’s important when your life path unfolds to reveal the necessity of a lot of clinical appointments, that you understand what it feels like to truly take responsibility for your own whole health. So I would say to anyone looking for guidance on how to move with agency and autonomy, that you continue to feel into the places and spaces that don’t want to be felt. Alongside huge amounts of kindness to yourself. What moves the compass needle is often the small changes. Because collective small changes results in transformation. We are what we repeatedly do.

Yoga was something I returned to in my late 20s. During the stressful working day, in the craziness of Canary Wharf, London, where I was working in credit risk, private banking at the time. The lunchtime yoga classes at the gym were an antidote and a sacred remembering to return home. This eventually lead to me going off to complete a yoga teacher training in 2012, returning home to discover not long after, that after 15 years of excellent transplant function, I was leaking protein, my blood pressure was elevated and the kidney function was declining. All worrying signs. Kidney biopsies and lots of clinic visits, anxious waiting of results, were a stirring up of so much memory that had not been sufficiently felt during my younger years. As things slowly began to unravel I realised I had not been compassionate to myself. It was humbling. The transplant rejection process had begun. Immunology is highly complex. In organ transplantation, much of this really remains a mystery. Fortunately for me, the rejection happened over about three-and-a-half years. For some, it might happen overnight. A real divine opportunity to sit with the feelings: to meet the fears of ‘what’s next’ up close. In choosing to go deep I certainly was guided by an inner calling.

It’s fascinating how the body will process the crud that has built up in the mind. The complete inter -dependence of the body/mind

Through a coherent yoga practise, we breathe, we move, we feel. We deeply enquire within. What might it mean to go deep. For me, it was lots of meditation during that time. I felt compelled to complete a 10-day vipassana. Utter silence. 10 hours of meditation a day. I got a lot from that. It anchored a regular meditation practise back then. Which isn’t always easy for people to land with. All things take practise. Once we feel direct benefits, we are more compelled to continue.

I explored a deeper sadhana (psycho-spiritual practices) through various mantras, different teachers, talking more openly with my Mom about the fears. A lot of crying. Leaning into support of trusted friends. There is so much wisdom available to us: ways to turn inwards, to seek the solutions inside. To then reach out in resonant ways. It is highly nuanced what works for you. Only you can know through feeling. Through deep enquiry. A willingness to question a status quo. The bone-crushing honesty of what it really means to take responsibility for your whole health. And to keep remembering to live for today. Tomorrow is never guaranteed.

In 2016 it was finally the ending of the first transplant. Kenny kidney. And nearly of me. Perhaps three or four days away from expiry. A flu came along, the function was already very low, no reserves to kindle. Culminating in an acute and serious admission. Flu, chest sepsis and renal failure in the transplant. Because of the deep dive within I had been on in the preceding years, I was able to be present through it all. No worry. Just trust. The emergency dialysis. The antibiotics. The IV bicarb. The dialysis discussions that would now need to be a part of my self-care.

I experienced an extraordinary and spontaneous complete surrender. During that acute episode. Held in love. Unconditional love. I was out of hospital in less than a week. Moving with it, not against. Swimming in a helpful slipstream. Thankfully I had a flexible routine, having set up by own business, Wholly Aligned, in 2013 after completely stepping away from corporate life. The demise in Kenny kidney asked me to listen to the whispers of my soul.

I took the view, as adapting to peritoneal dialysis at home, an eight-hour nightly treatment, to get strong and well for the next kidney transplant. An unknowable timeline. Even taking a static trapeze class. I think I actually cried the first time, it was the hardest thing I’d ever done.

There is no magic bullet. There is no single list of things to do and everything will be OK. Life comes with pain, suffering, difficulty. When we accept that and hold it in our hearts, we have a much wider capacity to hold compassion for others too.

What is helpful is to move towards the things that light you up. I consider these experiences, even though very difficult at times, blessings. To understand what really matters. To keep remembering what doesn’t! To spend time with people who see you for who you truly are. Because you allow yourself to be seen too. So much of this has been amplified in the times of Covid. The first lockdown happened just a few months after I had the call for my second kidney transplant. Another swift recovery in October 2019. However last summer, I developed a primary cytomegalovirus (CMV) infection – it’s a bug that hits immune-competent adults – that spiralled another deep dive into old triggers. Two weeks in hospital and another ask from the universe to go deep. How much more rinsing could there be! Oh my. There is always more. I know you’ll understand this. Because you are human too. We are all in this together.

From September 2020 all the way to now, this CMV has taught me so many new lessons. Probably about 50–60 clinic appointments in about nine months, anxiety waiting for results, the somatic memory that I have already experienced losing one transplant kidney. To strip back even more illusion. A powerful realisation landed one day, as I stood crying, standing in my lounge, facing east, this stripping of illusion. To stop the looping of expectation and anxiety. Given the complexities of what was happening, including the kidney being injured by the virus, severe neutropenia, elevated blood pressure because I was feeling under so much pressure – navigating these regular visits to hospital, made all the more curious by the fact it was mid-pandemic, took me on another journey within. It was actually exhausting after a number of months of this. I experienced six hours of psychosis after a kidney biopsy, when the night before I’d had a dream in which I was being asked to let go of everything. The psyche wanting freedom. The Spirit wanting to assist. It remains a daily exploration to keep reminding myself to let go. There is only today.

Following a transplant kidney biopsy, one needs to lie flat for six hours due to the risk of a bleed. The irony was not lost on me, that I was forced into being up close with myself. I couldn’t move. I had no inkling that this was going to happen. It just descended upon me soon after the tissue sample had been taken. Hanging onto the hospital bed rails feeling like I was losing my mind. This searing pain in my jaw and throat – like Edward Munch’s The Scream. The vomiting. It’s fascinating how the body will process the crud that has built up in the mind. The complete interdependence of the body/mind.

It was a humbling reminder that I was sabotaging my own healing, by pouring my precious energy into other groups. Carrying on as normal. When I needed to preserve my energy for my own healing. By January, these realisations really landed and I had to have a meltdown. The catharsis from the dream. To let it all go. Dismantle the illusions. I opened up to my Mom and sister about how I was feeling. I created space to heal where I stepped back from the things adding to the stress.

If something is possible in someone’s mind, then it can be birthed. This is how all things come to be. Everything starts with a thought.

I share this, as our evolution is always ongoing. And how in times of great stress, physical unwellness, emotional meltdowns, can we still remain in agency. And just allow ourselves to be in the process. Without judgement. Without drama. Meaning in all of this, it was still so key I showed up for myself in navigating the conversations with the renal team. The linear approach of biological result are this, so the treatment will be that. It might work at times. Yet when it just becomes this almost fixated, ‘this, then that’ there is no room for creativity or nuance. Thank God I have the tools to question. To state what is not right for me. And life does bring us what we need. So this is where the kindness and compassion to oneself remains key. And we need reminding all the time. Because things are always changing. And what worked last year, might not work for you today.

Through all of this, I continued to enjoy facilitating the virtual yoga classes I had been running since first lockdown. A community yoga class that I started two years previously originated from two social prescribing yoga classes I’d been running in south London. Having attended the inaugural Yoga in Healthcare conference in February 2019, this lit a hopeful fire of what is possible. There are several stories of how yoga is being integrated into the NHS. As with anything in life that succeeds, it is always about conversation and cultivating relationship. If something is possible in someone’s mind, then it can be birthed. This is how all things come to be. Everything starts with a thought. And then an action to realise the vision. To move towards what is good and hopeful.

Another brilliant project that birthed in 2020 – visioned by one renal physiotherapist, Dr Sharlene Greenwood, is Kidney Beam – arose out of her concern that kidney people’s health was worsening during lockdown. I got a call from the physio team at King’s College Hospital, London in Spring 2020, asking if I would be involved in my capacity as a yoga teacher with kidney expertise. Fully funded by Kidney Research UK together with support from King’s. To me, that is a powerful shift. And it came out of crisis. Galvanising a number of people to make it happen. Within six weeks it was launched. And one year on, it has over 1,000 people signed up and actively using its services for free, from gentle group physio sessions, to cardio workouts, to yoga and plenty of video content covering all kinds of helpful expertise. With recent research pieces being integrated given the large steering group across renal medicine involved.

We are all a part of the collective. Awakening our inner physician is nuanced. Each person is different. Whether it’s in navigating your own health situation, or as an open minded medic, wishing to make a difference. This is very hopeful. Especially given the 30 or so years I have had within the NHS since a young teen, I know up close how medicalised and linear renal medicine can be. So it’s exciting to be a part of this. And to watch how in the coming years it will unfold.

You might see the woven golden threads through my journey so far. And allow something to ignite an idea in you. For it is entirely possible for each one of us to kindle that inner awakening. To recognise with kindness our unhelpful patterns and to discover ways to interrupt those patterns. To foster a deep collaboration with your own self. And then to foster deeper collaborations with each other. From which dreams really can be visioned and birthed. Together, we create this, but it all starts within.

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