New article out
SEVERE ME UNDERSTANDING AND REMEMBRANCE DAY Aug 8th
We were asked by ME Group Australia to write an article on finding Hope in this place of endless, severe suffering:
You Are Precious And Your Presence Matters, a Reflection on Hope.
When you are diagnosed with Severe/Very Severe ME, hope is an ephemeral, delicate thing. If you hope to be immediately better, or return to your previous life, those hopes will, most likely, be dashed, if the diagnosis is correct.
When I was asked to write this article for ME Group Australia, I asked Linda, my wife, what hope means to her.
She commented : “Hope for me cannot be about anything specific, unless that specific thing is actually achievable, or potentially achievable or possibly achievable at some point in time, even if it feels unlikely . For me hope comes in small things, not big things.
Hope of a better moment, hope to not be irritated, hope to not be distressed, hope not to be tormented in every single moment, hope to flow peacefully, hope to have a two way conversation, hope in feeling the love that is around me and that is within me, hope that it will not be instantly obliterated by the extreme pain, the irritation, the torment, the hypersensitivity to noise, light, touch, movement, perfume.
When I first got ill I had hope I would get medical respect, I didn’t.
I hoped I would get a proper diagnosis; I have come to wonder how anybody can know.
I think that hope must be something that lights you up inside, keeps you caring about other people and things, as well as yourself, gives you some sense of inner peace, somewhere inside, gives you strength , even when everything is constantly crushed.
I think hope is the spark that keeps you going .”
We hoped to bring about a proper service, locally and nationally here in the UK , for the most severely ill, a new and separate service, that listened, heard, responded and met medical need. That never happened despite so many years of effort, I even spoke at Parliament.
Our Stonebird motto has always been this, that no matter what, even if you cannot move or think, you are precious and your presence matters.
To us this is of fundamental importance, because when you enter ME world, you find that doesn’t seem to be the case. People often walk away, you can feel abandoned, neglected, ignored, denied, negated, unless you are very lucky.
Here you come to live on a relatively different level of being, where there is no clarity, there is no path, there is no safe treatment to reassure you that your illness is understood and recognised.
You must hold onto the fact that you are precious and that you matter, otherwise you disappear. As Linda says:
“My hope has changed over the years.
Hope comes to me in focusing on love, focusing on beauty, focusing on possibility, whatever that is, even if it is a changed thought.
I don’t find it helpful to dwell on what could have been, what should have been, what might have been, what I want even. That is a painful road to go down.
What I want, beyond the very smallest of things, isn’t necessarily ever possible.
What is possible, is to be patient, to be kind to myself, to understand the complexity and to just to find something to feel good about each day, even if it’s being kind to somebody else, helping somebody else, saying something nice or just coping for a moment.
My expectations are much smaller, for what hope might mean and even they are difficult to achieve.”
In this situation you are vulnerable, desperate for solutions, likely not to be getting any or enough support and are incredibly open to mistreatment, misinterpretation and the negative impact of other’s opinions.
It is very easy to be harmed by others who profess to help you, as we have learned to our great cost.
You really only have yourself and the people you know you can trust to help you figure out what is best and maybe you only have yourself.
This is what we have learned:
When the state tries to devalue you, you need to hold onto your own integrity.
When people try to dismiss you, you need to hold onto your own truth.
When people disbelieve you, you need to state your case, for you can’t persuade someone who doesn’t believe you are ill, that you are ill.
When people say they have the answer, you need to have discernment .
When people ignore you, you need to find your own strength within.
When people say you “have to trust me”, you need to discover your own wisdom.
In this place you really do need to cling onto to the fact that you are precious and of equal value to everyone else and hopefully find other people who believe that also.
As an advocate and a carer, having lived through decades of crushed moments, disappointments, frustrations and witnessing, first hand, the most terrible suffering and losses too huge to convey, I have to find hope, to keep going, to keep growing.
The circumstances, I find myself in, demand that I change. It is down to your values and beliefs how you change. Linda is infinitely precious to me. It is the greatest privilege of my life to get to be with her and learn from her, again and again, the joy and the power of hope.
August 2025
Stonebird
ReplyDeleteFor Greg & Linda Crowhurst
Since stillness is what has been inflicted upon me
let me enter it with curiosity and notice
the depths of interiors where histories hum
and arteries carry remnants that feed smaller branches
which feed even smaller ones
that all too easily block–
cytokines and macrophages piling up.
When pain swells toward another crescendo
let me remember the Stonebird and roll
with the waves, one over another
not fear the creatures crawling my skin
or the winds that wear away at my armour and distract the tide.
When inside is too unsafe and isolation seems complete
let me return to the presence of bird-kin and float
away on the magpie’s morning song
or Waa’s caw of evening.
When all thought is gone
let me slip
into the softness
of the deepening dark
where kindness resides.
"The Stonebird represents the idea that you don't have to do anything to be of beauty and value in the world. Even if you cannot move, even if you cannot communicate, even if you cannot think, still you are precious and your presence matters" (stonebird.co.uk)
Dear Janet, I am so sorry, Linda and I have only just seen your comment. We are incredibly and moved by your poetry, it is so beautiful and exquisite. We are so touched you referenced the Stonebird in your poem. Poetry is so immediate, your imagery touches the soul. I am particularly struck by your entering into the silence, it is vast. Oh, Janet that line, “Waa’s caw of evening” it is so incredibly evocative, it sends a shiver down my spine, just sublime. Bless you, thank you , from both of us - from the heart xxx
DeleteDear Janet, I am so sorry, Linda and I have only just seen your comment. We are incredibly moved by your poetry, it is so beautiful, so exquisite. We are immensely touched you referenced the Stonebird in your poem, that means a lot. Poetry is so immediate, your imagery touches the soul. I am particularly struck by your entering into the silence, it is vast. Oh, Janet that line, “Waa’s caw of evening” it is so incredibly evocative, it sends a shiver down my spine, just sublime. Bless you, thank you , from both of us - from the heart xxx
DeleteI am so proud of Greg, Linda and Wendy, and there are others, but these three make me tear up with their constant concern. I was a tough man, but m.e has brought me to my knees thank you
ReplyDeleteThat means everything, thank you, bless you. ME is devastating, life changing, incredibly difficult to bear a lot of the time, it’s so immense, so vast, we don’t have the words to describe it. Somehow though, reaching out across from the world, we connect, encounter, encourage keep each other going with immense courage and grace. Thank you for all your help and support! Sending you all our love x
Delete