Showing posts from July, 2022


  SOME WAYS THE CARER CAN CARE FOR THEMSELVES 1. Take a few moments at least, at the beginning of the day, to centre yourself and be still, to prepare for the day ahead. 2.Do not overload yourself nor rush things; that is when mistakes get made and you can end up feeling bad about yourself and hassled generally. 3. Do not over extend yourself, trying to please too many people and not looking after yourself as a consequence. 4. Learn to be assertive in a gentle, kind way. 5.Find things that you can enjoy in appropriate ways that do not cause problems for the person you are helping. 6.Be creative in how you can do things in new ways, don’t be too rigid or expect more than is possible of yourself or the other person. 7.Look for the small things that bring happiness. 8.Appreciate yourself. 9. Appreciate other people. 10. Acknowledge what is going on inside, do not just shut down or not deal with feelings that are uncomfortable to deal with. 11. Become more aware of the simple things in li

A Caring Life

  Getting through the impossible moments when you are faced with life-altering severe illness, demands a high degree of self-reflection, honesty and understanding. For the last thirty years my wife and I have had to live within a context of unimaginable, endless physical torment and multiple hypersensitivities with no cure, no standard treatment pathway, no way to physically alleviate her intense, ongoing suffering. Learning how to care and learning how to live, then, has had to be our focus. Much more than just seeking to survive or cope, we want to grow together and live our marriage to the fullest possible extent. Individually different, the challenges we face are jointly the same. How can we stay connected, loving, flowing in this agonising, intolerable situation that we find ourselves in, not just for a minute, not just for a day, week, month or even a year, but instead, for ever? That is overwhelming unless you take it a moment at a time. The challenges I face as a husband,

Approach to Care

WHAT DOES YOUR APPROACH TO CARE SAY ABOUT YOUR DEEPEST BELIEFS, THOUGHTS AND FEELINGS? Perhaps you are not that aware of how your thoughts, feelings and beliefs influence how you provide care to someone else. Or perhaps you have never articulated them clearly? Yet if you want to offer the best care possible, they are important to understand. Your values are what you hold dear, your beliefs are what you think is true and your attitude is how your values and beliefs influence your feelings and actions. For example if you are feeling distracted by wrong thoughts or if you are finding it difficult to be compassionate, you are almost certain to be less aware of the needs of the other, so you may not provide help in the most sensitive way. I cannot emphasise enough how much, over and over again, it helps to take the time to really understand what the other person is going through and how their illness affects them, particularly if they struggle with interaction themselves. Always

Learn to wait

  It is intricately complicated, learning how to live and communicate with someone whose communication pathways are broken on every level. The one who cannot think, move, remember, speak, write, tolerate sound or movement, easily or at all, is drawn into a potentially fraught and delicate relationship with the other: If the person has to wait in agony, so you too need to learn to wait, patiently and peacefully, hopefully, despite any personal frustration or need. If the person cries out, you feel it deep in your guts. If the person is suddenly confused, you too experience the uncertainty of confusion, not knowing exactly what is required. If the person is cross or distressed, it breaks your heart. A fragile relationship is born over time, one that wends a path between silence, stillness, movement and sound.That path is not easy to navigate, it can only be entered upon when guided by a true heart and the most sincere commitment of love and compassion. (Adapted from "More Notes For


  Unfortunately many of us do not know who we are. We spend our lives seeking success, social validation, status, affirmation, too terrified to let go. Caring for another, however, challenges all of that. What if today : You knew that you are unique, beautiful, precious? You saw yourself and others with soft eyes, especially if and when you feel like withdrawing? You could let go of guilt? You let go of shame? (Adapted from "Caring For ME" )


  This is the story of Stonebird, the many, many years of campaigning, fighting and now the struggle to move on, to reclaim our life.


  WHEN THINGS ARE THAT THEIR MOST DIFFICULT, sometimes the only way to hold it all together, to get through is to: 1. Hold onto H OPE of a better moment. 2. Seek any possible O PPORTUNITY to bring warmth, comfort, consolation to the situation. 3. Stay focused upon the P ERSON. 4. Do E VERYTHING you can, to protect and help . When things are at their awful worse all manner of emotions, ranging from fear to empathy to anger, from wanting to be with, to wanting to run away from, can emerge and overwhelm you. Facing your own limitations, fears, inability, inadequacy in the face of massive and immediate need can be difficult and devastating, but ultimately freeing,, because beyond it all you may find the incredible strength and love that is nestled deep within you, in the core of your being.

The Loneliness of the Carer

Image THE LONELINESS OF THE CARER - a song Out of her terrible agony, the desolation, the constant torment, my wife looked at me the other day and said that she just needed "something good" to happen. My sadness was overwhelming. This in context of our life where with most things stripped away, the best you can hope for is to find a moment of comfort. Here time does not seem to flow in quite the same precise way. It slows. Everything is bathed in nothingness. Nothing is achievable.  The world disengages from you. People disengage from you. They stop bothering to ring. They stop bothering to call round. They stop relating to you. They stop including you in their lives, their plans, their world. They stop expecting you to be there . It seems to the world as if you have gone away. It takes great strength of character, great inner strength to bear th

There must be a word…..

There must be a word . There must be.....for I badly need to describe this experience to myself ...... Is there a word that encapsulates the magnitude of the loss in long term Chronic Illness and Acute Hypersensitivity? The decades of invisibility, separation, isolation . The years of no one seeing you, or recognising you, or knowing you anymore. The physical losses . The loss of interaction. The loss of being understood. The financial losses, the poverty. The enormous loss of what might have been. The career, the holidays, the concerts, the coffees, the traveling, the children. What is the word I am looking for?  What is the word for everything taken away?

A Challenge To Grow

For any relationship there is is inevitably, over time, a challenge to grow, to deal with change, to face adversity together. When very severe chronic illness invades your world, however, it brings a profound encounter with your own limits, paradox and mystery, for you are daily confronted on multiple levels with loss and grief alongside a need to rise above it all and find your true self, even in the darkest chasms of pain. The immense physical, emotional and spiritual stresses and strains of a situation where the other is long-term ill and disabled, can bring encounter with loss, grief, anger, despair, a sense of hopelessness and helplessness. The challenge is to look beyond the situation and try to see new possibilities, anything that might help, that can be done differently or even learning to live with and accept things as they are. Often I have had to dig very deep, to find some chink of hope, in the darkest, most hopeless times. Entering into this journey with compassion for


  SOME OF THE THINGS MY DOG HAS TAUGHT ME ABOUT CARING FOR THE ONE YOU LOVE. 1.Look after yourself, be kind and be sure to affirm who you are. 2.Flow from your heart. 3.Learn all you can. 4.Remain focused on the person, who they are and do not forget this, even when illness seems to deny it. 5.See the person but recognise their illness reality, so that you can understand the impact on both of your lives.  6.Take space for yourself to heal your own wounds and losses. 7.Be very gentle to yourself, especially when you struggle . 8.Keep healthy by eating well and keep fit if you can. 9.Do things you like to do but be flexible as to how and when you do them; think in new ways.  10.Be together in whatever way is possible. 11.Do not let systems or people be divisive or come between you.  12.Do not ” clientise” your loved one or let anyone else depersonalise them, so that your relationship stays strong. 13.Find ways of connecting with each other as your essential selves. 14.Express your emotio

A New Perspective

  Last year I chose to stop posting on my Stonebird website. There are still links and information that may be useful, but it will no longer be updated. I will, however, share general thoughts on Caring here on my blog, as well as a wealth of other creative material I am producing. I am taking the time to shift my focus to fully exploring my creativity. Right now I am actively working on finding an Agent for my series of Young Adult books. It was an enormous affirmation when I was recently shortlisted, for the second time, out of 2000 applicants for the 2022 Alpine Fellowship International Visual Arts Prize. It’s theme was “ Freedom”. See the YouTube video below. It was a joy to create. I composed and performed the music, drew the pictures, narrated the piece and created the video entry. QfrBzEv92bU&feature=share& fbclid=IwAR1_ 3lEyXpV9PuCOCn70ogO6RselCfXoQn XEBf7m-ctO3wwtHGo2e2KBtsM I live and breathe music. How can one’s heart and soul not cry