A journey through Advent , from the perspective of living with and caring for someone with Very Severe ME

 A candle light burning

December 24th :


Every day with Severe ME you have to summon up the courage to persevere ; whether carer or person who lives within the ilness. As carer you have to summon the courage to keep on facing each day , looking on while the person you love continues to struggle with devastating symptoms and illness, you have to keep seeing the distress they are in, you have to hold onto your own distress and master it , so that you can keep on helping, keep on understanding, keep on persevering, watching them struggling, feeling their irritation and irritability, knowing you are helpless to take their pain and suffering away.

For the person with Severe ME you have to summon and keep summoning the courage to cope with indescribable and ongoing intolerable symptoms. You have to summon up the courage to go within and seek peace , patience, hope , love, tolerance, kindness. You have to keep aiming to be bigger than the illness again and again.

This is a huge task, summoning up the wherewithal to keep looking head with hope in your heart, despite knowing there is little can be done to help you and few people trying, despite a huge and outrageously arrogant psychiatric lobby that has diminished your illness and your physical reality in the eyes of most of the world and the medical profession.

Believe me, this takes guts, defiance, perseverance, determination, will power and vast emotional , spiritual and mental strength to keep on coping and summoning up love to help you through each moment.

If you can call upon the Holy spirit to help you in this endeavour, you will summon up the Power of the Most High. You will have all the power of heaven and earth working with you. You will be lifted up on eagles wings and you will be strengthened and renewed again and again, for Love does not fail and love lives with us , when we call upon God in all our many moments of absolute need. And He will always answer.

This is why Jesus Christ came into the world, that He might be with us in our absolute need.

On Christmas eve we especially give thanks for this great gift. We look toward the Christmas star that lights the heart and leads the way to Christ with us, born in a manger, vulnerable and persecuted, excluded by society and only seen by those who have eyes to see.

May we pray with all trust that we will always have eyes to see and ears to hear the Truth, because of this Holy night when the star lit the way to Love incarnate . Amen.

 A candle light burning

December 23rd :


At Christmas time we are led to focus on rejoicing. It is traditionally a time of bounty , happiness and celebration. Rejoicing is not a word that comes to mind when you think about ME though. Life is so complex, so difficult, so isolating, so bizarre in so many ways.

Our rejoicing then is tempered by the sadness , anger and outrage that people with ME are so grievously abused and oppressed in the world. We simply cannot turn our eyes away from the truth of such oppression and suffering, which we also know personally.

Rejoicing then must come from God : rejoicing is a gift of the Spirit. Rejoicing aligns with praise and praise is definitely a gift from God, that enables us to move beyond the present physical reality we find ourselves in, that lifts us into the power of love, beauty, wonder, the awesome nature of God here present with us.

Praise and rejoicing lifts us into the Heart of Love where we can know God in His absolute fullness, where we can feel mercy, compassion, forgiveness, love; touching and healing us, flowing within us and through us, where we can see all, bathed in His perfect light, with new eyes, where we can hear the truth resounding perfectly.

It is a miracle , a wonder and a joy of the Spirit, that we in our suffering ,can still turn our eyes and our hearts to God and rejoice in His presence and His gifts that sustain us and bless us every moment .

We rejoice that , as Quantum mechanics has proved and that as the mystics have said, throughout the ages, every single person is created uniquely and has more value in God's eyes than all the kingdoms and pomp and trappings of the whole world.

We rejoice in the power of the Holy Spirit to lift us above all despair or any thought of giving up . We rejoice that He moves us to serve as Christ served and to live in Love, Mercy , Goodness and Truth !

 A candle light burning

December 22nd :

To Journey

There are two parts to journeying. There is the journeying towards God, where we seek God and we search for God, where we look without and are drawn within , in order to find Him and then there is the journeying with God , when we have found the truth and we discover we do not have to journey to God at all, for God is with is and always was and ever will be.

There is , then , a paradox in journeying, for when we find God we realise He was always with us and we were never journeying alone. For He has always called to us, embraced us, wept for us.

The true journey, then, is perhaps a journey within, where we enter more and more deeply into the Heart of Love, where we can seek to know God more deeply, more truly, more powerfully and with this knowledge our journey in the world becomes enlightened, uplifted, strengthened, healed and radical , as we embrace the truth of the power of the One who is present and ever-loving . Amen.

A Hindu mystic once said that those who suffer are God's messengers. Those who suffer know why Jesus emphasised faith and trust so much; for they know how to wait, time and again, before journeying ever more deeply into the depths of the Paschal mystery, the mystery of the Cross.

The spiritual life is always about falling, stripping away, desolation, finding, transformation, transfiguration.

Those who suffer are the messengers of God, so close are they to God that any falsehood is exposed, stands out like a sore thumb. I often wonder if my wife, who has not been to Church for many, many years, could ever sit in silence in Church, listening to a sermon, without speaking out.

I suspect not. I suspect not many Churches would welcome her.

 A candle light burning

December 21st :

To Shine

Saint John states that it is those who do the truth, who shine. “Religion” often is interpreted as “ knowing”the truth, but Jesus did not come to write theology books, little of what He said was written down ; He left us very little apart from the truth, which is very simple.

Set my people free.

Simple, but profoundly costly.

This Christmas it looks like we are getting nearer and nearer to having the biomedical truth of ME recognised. That is down to the work of the few courageous , shining , individuals who have stood up for truth and never compromised; they are the ones who have kept me going over the years, not theology, not dogma, not the Church.

The truth must be heard, those who speak it become the radical edge in a world that constantly compromises or tut-tutts away the truth. To have the strength to speak out I have found my faith in Christ to be the source of my courage and inspiration. His light burning in me , the Holy Spirit, empowers and enables me to speak , enables me to see what is true - and to dare to light this candle today.

There are no words to express the awesome beauty, power and wonder of the light of Christ with us. To look towards Him then, with inner eyes, we are filled with His radiant energy and overcome by the purity of His light, which shines into our whole being, so that nothing is hidden, everything is bathed in the most wonderful way, in all that is good, in all that is kind, in all that is healing, in all that is hopeful; there is no darkness when we look to God, His light shines totally within us and radiates out from us.

Thus we are transfigured, to see and know the truth, the love, the mercy, the absolute oneness of God and lifted into a totality of healing energy, that lifts us and strengthens us and fills us and emanates out into the world.

Once touched by His Light, you can never be the same again, for goodness shines within you and transforms your life.

Once you have seen the Light of God you know the Truth beyond words, that He is truly with us and His Light working in us must surely bring healing to the world.

Let us seek the Light of God then and shine for Him on every situation we find ourselves in. Amen.

 A candle light burning

December 19th :

To Require

It is said that it is only a Saint who can go into a Church , speak and empty the place; either so inspired , scandalised or outraged the congregation would be.

With the disabled facing wide spread benefit cuts this Christmas as well as increasingly being labeled as underserving scroungers, fraudsters in the press, with “freedom” meaning “greed” nowadays, with the Insurance Industry lobbying across the board to reduce heath care, with the two main Presidential candidates in the USA, quoting Jesus to justify cutting welfare and doing away with the minimum wage; where is the Truth and Love ?

It is required that we speak out, that we mobilise , that we tell the truth, that we take a firm stand for the truth, that we do not compromise on truth, that we are brave, courageous.

It is required, that we are saints. The truth of ME must be known and we must speak loudly until we are heard, for the suffering is intolerable.

To live in continuous physical suffering, requires great strength of fortitude.

To seek for peace and God within, takes great faith, for who would think within the mass of screaming, throbbing, burning, irritated, damaged, tormented cells, mitochondria, muscles, nerves, brain cells, skin, organs, that make up the physical body, there could be one dot of peace, one moment of hope, one candle of light ?

For to go within such a tangled mess of torment and constant ongoing physical distress, to seek within the dim lit foggy brain- damaged mind, to enter deeply into the heart of pain and still find love, hope, joy, beauty, requires great strength of character, courage, bravery, determination, perseverance, acceptance, patience, trust, that the Lord is with us and will answer powerfully , with great awareness of His presence and intimacy of spiritual knowledge, blessings in all abundance.

For those who enter into this deep mystery of suffering, come to know God more intimately and infinitely than most.

For in truth you would think there is no where else to go but despair. Yet Christ enters into all despair , all hurt and brings the power of love and mercy to touch and heal, ease and comfort and help , to bear all.

All then that is required of us, in whatever suffering we find ourself in, is the daring to seek the truth of His Love.

Great will be the rewards and countless the blessings.

St Peter says to be a saint is to praise God and offer up your suffering.


 A candle light burning

December 18th :

To Proclaim

One might think of proclaiming, initially, as an external act. To proclaim the Lord might be interpreted as telling people about God , as speaking about God, however the true way to proclaim God is to open your whole being to His indwelling light and ask His presence to dwell within you , so that everything you do and everything you are proclaims the goodness of the Lord and proclaims that God is with you for all to see.

Proclamation then become an inner experience, where you exist in oneness with God and all is transfigured, transformed and radiant for all to see. His power working in your life transforms all that comes your way and lifts you into the Heart of Love.

The light you shine, then , proclaims the Lord and the whole of your life can become a prayer . This is illuminated most powerfully and humbly in Mary 's proclamation of the Magnificat, in the presence of the Angel.

Mary does not outwardly shout about God , she innerly accepts God and opens herself to His goodness and His Love.

Proclamation may be invisible to those who do not have eyes to see, yet the whole of creation rejoices, with Mary , that her soul proclaims the Lord. It is on this level that we too seek to understand and know the depth and meaning of proclamation.

For it is our inner being, wherein the Lord alights and blesses us.

My soul proclaims the Lord
My soul proclaims His Light
My soul proclaims His Goodness
My soul proclaims His Justice
My soul proclaims His Truth
My  soul proclaims the Way
My soul proclaims His Freedom
My soul proclaims His Power
My soul proclaims His Song
My soul proclaims true Liberation
My soul proclaims all Hope
My soul proclaims all Trust
My soul  proclaims all Mercy
My soul proclaims all Peace ; the peace that surpasses all understanding.

Praise God for Christmas.


 A candle light burning

December 17th :

To Pray To

I realise that to be a man, as well as a carer , I can live my life in a dull way - or with power and spark ! I can come not from poverty and shame and smallness, but instead live powerfully, caring for myself and others.

I realise that to pray is not just about asking God for things, which is the more traditional view. Prayer is to live in the depth of my being and to know who I am. It is to enter all that is and there find the peace that passes all understanding.

To PRAY is :

To live in Power
To be  Radical
To be Aware
To say Yes

Praying is not an abstract concept. Prayer does not go out into emptiness and nothingness. Prayer is dynamic, prayer is relationship, prayer is knowledge, trust, faith, hope, being.

Prayer is the way to connect with God, prayer is the medium through which relationship with the Divine is made real. It is alive with the energy of Spirit, it is filled with light and life.

When we pray to the Father, the Father hears, the Father listens, the Father loves, the Father gives, the Father consoles, the Father hurts too, the Father weeps with you.

When we pray to the Son, He knows intimately everything; what we say and what we don not say. He knows the fulness of our experience, He reaches out wherever we are, however wounded, however far from God we feel, however lost, however broken.

He is the way to love, He is love, He embraces all of us, just as we are, just where we are, He is with us when we pray, He is wholly present, there is no separation when we pray to the Son.

When we pray to the Spirit, we are flooded with His energy, His power, His gifts, we are energised,uplifted, commanded, inspired, given clear sight, , enabled, guided , strengthened . When we pray to the Spirit, we feel God, God's power active in our lives.

When we pray to all Three, we are immersed in the totality of love pouring out through all time . We are fulfilled spiritually. We are held and we are redeemed. There is nothing more powerful than to pray to the Trinity, for there can be no greater answer given than their response, for it is the totality of God in whom we live, breathe, act, trust, pray to. Amen.

 A candle light burning

December 16th :

To Ordain

The Lord Himself, ordains all who suffer to be a part of His Royal Priesthood. To live in His light, his service, enabling all suffering to be transfigured and transformed.

We alone who suffer, where suffering cannot be taken away, enter into the Passion with Christ Himself. We are held in this awesome place of pain and transfiguration and through the power of love and mercy, give witness to the truth of the life and the light of man. We give true service to God, held by the power of his Spirit, through every agony, to bear witness to His goodness and His glory.

Suffering is not just suffering, when it is touched by he power of prayer. We bear witness to God as we endure and still sing songs of praise and focus on Love itself.

We are set apart then in a Holy Mystery that brings meaning and truth into the world and bears witness to all that is unjust and wrong.

Despite our pain, if we hold onto God, if we hold onto love, if we hold onto compassion, then we truly know God and His light will be revealed in us for all to see; this is the true meaning of ordination, this is the true Priesthood that Peter speaks of in his letters.

The meaning of the Incarnation is a call to action and service, is a pathway to love. When everything is stripped away from you truth shines bright and relationship with God is central. It is this relationship that shows the true Priesthood; by their fruits you will know them.

 A candle light burning

December 16th :

To Demand

I can live my life , especially this time of the year, feeling sorry for myself. I can live my life getting eaten up with anger , at the oppression, the isolation, the poverty. I can live my life in regret, for the family we have not been able to have, for the tens of thousands of moments we have missed out on.

Or I can get over myself; that is the demand I make of myself - live : be available, love, create, fight, bake, paint, write, hold, comfort, be comforted in this moment, enwrapped in the mystery and the ground of being; God.

God is at the centre of our life and our being ; His presence is visible by the fruits we bear.

This demands much of us. We must refocus and stay true to love each day. It is not easy , but we are inspired by God: His Truth, His Justice, His Wisdom, his Discernment, His Love . We are not just asked to bear all that is painful and wrong in ME. We must look after ourselves and continually focus on God so that we can continue to speak out inspired by all that we know to be true.

The injustice and wrong treatment people with ME demands that we speak out, demands right justice, demands the truth to be spoken, demands of us that we are bigger than we feel, demands of us that we do not compromise the truth, demands of us that we are true to the life that burns within us.

The injustice also demands that God hears us and not only that He hears us , but that He answers us powerfully, that He is with us, not just passively but powerfully.

We are not just expected to absorb and absorb and absorb and continue to absorb all the wrongness, all the suffering, all the untruth, all the misinterpretation, all the misrepresentation, all the self justification that denies our reality.

God sent John the Baptist out to speak the truth; to demand we walk a straight path of truth. Though he lived in the wilderness, his voice was heard, the truth shone for those who had eyes to see. The truth was heard by those who had ears to hear .

As we light our candle this Advent then, let us be a light for truth, let us shine in the desert of ME and let us demand of God that He empowers us with the Spirit, so that the truth of ME, the truth of the suffering, the truth of the physical disease goes out to the whole earth and banishes all that is unjust.

Let us demand this of God and let us demand no less. Amen.

 A candle light burning

December 15th :

To Withstand

To light this candle, in the presence of total agony, inability to breathe, inability to find any comfort whatsoever, extreme hypersensitivity- what an act of courage and faith !

Light and faith are needed , to withstand not only the desert of pain, but also the desert of not knowing where you are going - in Severe ME even that is taken away from you, yet here in the desert of uncertainty, there is a sense nonetheless of being led, that grows stronger in this little light.

To withstand all that we need to withstand, when we suffer with Severe ME, the moment by moment physical assault , the intense, unrelieved physical pain, the increasing torment of neurological damage, the assault on truth by the psychiatric lobby, the dearth of adequate medical testing to find the cause and safely treat the dysfunction, the rejection by society, the neglect of politicians; the list of injustices seems endless, we must stand with God in order to survive, in order to be steadied, in order to grow, in order to live.

The candle burns, we are still, we pray. Caught up in the wonder of the flame, love soars, our hearts burn bright ; triumphant.


 A candle light burning

December 14th :

To Venture

To venture into the wilderness , where there are no landmarks, you learn that faith is so much more than an ascent to obtuse ideologies and dogmas, academic teachings, theological theories - which have little to do with survival, journeying, moving on, not getting stuck, not giving up, not sinking, not drowning in despair; have little to do with God.

To venture seems a strange word to contemplate, from the perspective of Very Severe ME. It brings to mind the spirit of adventure and the much repeated phrase,“ nothing ventured, nothing gained.”

For myself, waking up every day, into a paralysed, tormented, distressed body, makes it difficult, some might say impossible, to capture the spirit of venturing forward, that may be so easily grasped by the world , yet taken so easily for granted.

In fact I cannot physically venture at all, because on waking there is absolutely no part of me that can move. Thus to contemplate the spirit of venturing, I must enter into the world of Spirit, the truth of God, the reality beyond and within physicality , I have to find more to myself, than this physical torment, to survive, to hope, to bear, to live, beyond the crushing physical existence, imposed upon by ME.

And so I look within, to find God's light, to feel God's presence, to feel love, kindness, compassion,tenderness, goodness, still living within me. This inner spiritual awareness, gives me strength, to venture beyond the moment I find myself in.

Each moment, though physically tormenting, needs the grace of God to continue to move forward, to continue to fight for truth, for justice, for right treatment.

Venturing forward has led us on a path to speak out, to show the reality of my physical suffering, to counteract the untruth that is buried within society, that ME is not that serious, is not that disabling, is because of wrong thought and deconditioning, is just a mental health disorder.

The Spirit burns within us and allows us no peace until we stand for truth. For to accept less is to live in denial and to not venture forward, embraced by love.

 A candle light burning

December 13th :

To Take On

When we first got married it seemed there was no end to what we could dream. But devastating, crippling, never- ending sickness and profound disability came and never went away. Now our dreams are necessarily limited. Not many could cope.

We have not only had to take on living within and through constant suffering, we have had to deal with the lack of resolution . Other people get sick and get better, there is an end to it. Here, after 18 years, there is no end remotely in sight, in fact it gets worse by the day.

To take on a journey like this, three things are necessary : the ability to embrace uncertainty, the courage to hold on, the desire to grow - in other words, Faith, Hope and Love.

When you enter into the world of Severe ME, the injustice and mistreatment is grotesque, the more you see it and understand it.

The longer you live in ME world, the more separated you become from the world of ordinary things. The carer, who also enters in and dares to tread where others would not dare , sees what no one else will see, will end up taking on many things.

For to gain any kind of valid service for the person, you care for, you have to take on the unjust rigid systems that help to alienate the person with ME and do so much harm, whether through ignorance or deliberateness.

When you enter, with open heart into the life of someone , so fragile, so vulnerable, so physically ill and incapacitated, it is very important that you see things clearly and that you still maintain some sense of self, so that your whole world does not become consumed by ME.

Beware of taking on more than you should, of identifying with the person more than is healthy, of over identifying with the ill person's experience and somehow making it your own, this will not help either of you.

The way to take on what is right and just and not to take on that which you should not, turn your eyes to God and always ask for His help. His gifts of the Spirit are powerful. There is great need for wisdom, discernment, truth, there is great need for love, compassion, mercy.

These gifts will empower you, will heal you, will aid you and remember that these gifts are not just for you to use for others, but also to use for yourself. Always be kind to yourself, always seek for understanding and self awareness.

Self awareness, illuminated by God's light, empowered by God's Spirit, filled with God's compassion and mercy, will keep you safe.

God's wisdom will keep you wise.

The Sword of the Spirit will help you take on all injustices.

The power of Love will help you heal all hurt.

 A candle light burning

December 12th :

To Support

Only God is constant , thus his support is absolute. If we rely on people they may let us down, get it wrong, be inconsistent.

Human relationships are complicated yet God's relationship is pure . His light shines constantly. He never leaves us, even if we think we are abandoned, because life is so painful and difficult that we cannot see or feel His presence actively in our lives; yet still He is there , with us, for this is God's promise: to be with us to the end of time. His love is everlasting. So if you are feeling small , lost , helpless, alone, abandoned, wounded, turn your inner eyes to God and there find sustenance, rest, support, comfort, renewal.

To support someone with Severe ME is to live with paradox, contradiction and uncertainty. Not only do you need to accept the wholeness of yourself, your good as well as your equally unfathomable shadow side, you also need to accept the seeming contradiction, mixed motives and ignorance of others.

If only everyone understood what Severe ME is, if only you could be certain that everyone was coming from a true biomedical basis, if only people would respond rationally, fairly, if only others grasped how fragile your situation is, how terribly stressed you are.

Being able to stand back from either/or thinking and see things as they are, not as you might like them to be, is to see as all the great mystics down the ages have seen.

To support someone effectively with Severe ME, is not to get stuck, either in yourself - or in making shallow judgements about others. It is to live in wholeness; this is the meaning of Salvation. At this time of the year we are reminded of the words of Zachariah, that at the heart of Salvation lies forgiveness. Let us ask God for His blessing in helping us all learn how to forgive.

 A candle light burning

December 11th :

To Suffer

Church bells across the valley; ringing out this Sunday, "God is here, God is here."

So close to Christmas, you cannot escape the poverty we live in, poverty of opportunity-unable to even think about planning to see family over Christmas, poverty of resources, to buy presents, poverty of exclusion, we live on the edge of society, oppressed on almost every level, poverty of never-ending physical torment. The way of suffering is intense in ME. You suffer from activity. You suffer from inactivity. There is never a clear path to take you through each moment let alone each day. Suffering is at every turn.

Yet there is peace in the cold day, a spirit alive with ideas , fighting on, our oneness.

If you can turn to God and lift your heart to His then He will give you sustenance and hope. Many suffer without end, yet miracles happen and hope still abides. Advent is a time to Hope. The message of Christmas is God is with us. He is with us in our suffering. He transforms all in His Light and beauty. Let us then hope for miracles and lift our eyes to the Lord.

A French mystic once said that the road to heaven, is heaven, the road to hell, is hell; our journey has taught how true that is. We do not live in hell. God is present in this place and caught up in the Heart of Love, we continue to break open a pathway through the suffering and in glimpses, we touch paradise.

 A candle light burning

December 10th :

To Stand Up

18 years into living with and caring for someone with Severe ME we find that taking a stand for Truth does not make you popular; it is so much easier to compromise. We have found that if you try and take a stand for a truth , it is often either met with suspicion , contempt, hostility, negation or a closed mind.

To take a stand for Truth in Severe ME is to take a lonely stand. Not many will stand with you. Almost inevitably people will walk away; sometimes you have to walk away.

In our experience the more severely ill you are the more people don't understand your reality or the dangers of compromise . You are literally fighting for your life so the Truth is essential to cling to and cannot be relinquished.

Jesus said “I am the Truth, the Way , the Life.” To follow Christ truly is to walk the Way of Truth. This requires humility and the constant ability to think non - dualistically; not to get stuck in false thought or action , not to be closed, rather to be fully alive and present in the moment ; discerning the True Way.

Dogmatic thinking is based on closed thought; there is no option to change it. The closed thought leads to resistance and ultimately a closed mind. The paradox of truth however is that it is absolute, yet not closed. It is open , yet needs discerning. You have to seek it, find it, contemplate it, consider it. It shines before you radiating openness and clarity, not resistance.

The paradox of the absolute truth of God is that it is not rigid, as in dogma, but flows, opens, delights, enriches. It must be considered, it requires an open mind. It requires presence; to be in the present moment, to discover what the truth is. The truth is steadfast and constant. The world is relative.

Dogma binds you to negation. Truth binds you to love.

To stand up for the truth , means not to get stuck in limited thinking, rigid ideas and non- acceptance. A closed mind will never find the truth. A closed mind will not see the truth, only an open mind, an enquiring mind, an open heart will.

A closed mind will lead to a closing of the heart. An open mind enters into the heart and is filled with the truth of the light therein.

Open mind, open heart , bring compassion, justice, right sight, acceptance. Open mind leads to examination, consideration, seeking of truth, understanding flows from the Heart of Love. It leads to learning, connectedness, it leads to righteousness, it leads to justice.

It never creates blocks. It never leads to negation, isolation, punishment, labelling, disharmony. You can always see the results of closed mind, rigidity of thought, dogma, when you see injustice, negation, self-justification, persecution, disharmony.

Truth embraces all and finds a way forward, based on truth, love and right action.

Standing up for this can be painful when you hit against dogmatic thinking and closed mind. This is very much the experience in Severe ME.

We desperately need the power of the Spirit to give us the gifts of wisdom and discernment so that we don't get stuck in dogmatic thinking and so that we recognise it when we come upon it. We need to reach out always in hope for the a true path and the way to go.

It is essential always to examine your own thinking and ensure that you have not got stuck in ideology or clinging to a particular belief that blocks the right way forward. Standing up for Truth requires humility ; it has to begin with yourself.

This is the way of the mystics through the ages, ever open to God. Let it to be our way today.

 A candle light burning

December 9th :

To Risk

This living with and caring for someone with severe ME is not for cowards. It is lot to go through. Not everyone understands the particular difficulties the carer faces, they are so complex. The carer 's very presence can easily make the person more ill. They risk being shouted at, they risk being told to leave the room. On another level, trying to get a service for someone, there is a constant risk of rejection, abandonment, people walking away because they do not understand - or they do not want to know.

Sometimes it feels as if you are continually picking yourself up off the ground. The risk is that you give up or reject the person yourself because it is just too hard.

To speak up about the injustice and the untruth surrounding ME may seem like you are taking a big risk. It may make you feel uncomfortable, uncertain, vulnerable, scared even, but ask yourself this: what greater risk do you take by not speaking out, by hiding away, by compromising truth, by being afraid , by standing silent while the psychiatric abuse carries on ?

You run the risk of complicity in this dreadful untruth that is so infiltrating into all systems, bringing injustice , misinterpretation, misrepresentation and wrong or no treatment to genuinely severely ill, vulnerable people.

The way forward is the Holy Way of continually creating and growing, of living in the present, fully alive, trusting in goodness. This is achieved to the extent that you are able to turn around again and again and again and go forward. The ancient name for this is metanoia - or repentance.

When you dare to take the risk, you find that God stands with you. You are not alone. The Power of the Holy Spirit is awesome and majestic. His Power is with you. You may feel small, you may feel abused, you may feel the injustice deeply, but God is with you and He is holding you, so be not afraid. Love will triumph. Dare to risk.

 A candle light burning

December 8th :

To go through

Probably the greatest thing you go through, living and caring for someone with Severe ME , is change. One of the most profound changes is the process of learning how to appreciate the reality of Severe ME. Only those who have journeyed deep into the illness really know; no one else has a clue.

Surrounded by hostility and attack from every side, you learn to appreciate Truth ; for it is all you have left to hold in to. So you grasp it like you would grab hold of a rail or a mast in a tumultuously stormy sea. Let go of Truth and you are truly finished, compromise away your values and all is lost.

Finally and most mysteriously is the learning how to appreciate life and creation , this includes how to appreciate oneself. Only then perhaps is one ready to stand in awe before the light that cuts through all suffering all untruth all illusion, naked and unashamed.

Let us then remember that the Lord knows all, is all, is with us all, has gone through and continues to go through every moment of pain of the whole of the world with us.

Let us rejoice then for this knowledge; that no matter how difficult our path, no matter how painful our journey, no matter how abused, mistreated, damaged we are, God is with us and goes through our suffering with us , bringing us His great blessing of Peace: an inner Peace absolutely not of the world and a grace that shines in the darkness ,leading us on to hope of new life.

His Spirit is with us. Praise God for this Truth and empowerment against all injustice and suffering. Amen

 A candle light burning

December 7th :

To fly in the face of

Red berries , barren hedgerow, bright blue sky, bitter, whipping wind , flying tatters and branches this morning; how much of our life flies in the face of all that is conventional or sensible.

To more than survive living with ME, you have to fly in the face of despair, negativity, untruth, neglect, abandonment. You have to find hope, intrinsically within yourself and that hope is buried in life itself.

Life that calls you on to find joy, hope, excitement, kindness, compassion for others, even whilst in daily torment and profound illness.

To fly in the face of despair is to focus on hope, not hope in worldly terms, hope of getting something, hope of achieving something, hope of making something, but the all-powerful, beyond the world hope of God that lifts us up and lifts us into beauty beyond despair.

To fly in the face of expectation is to find God wild and present, here with you, not locked away in some Church somewhere, is to soar in love, is to carve out a path of healing where there is none and no resources .

To fly in the face of convention is to find fulfilment in being not having, strength in bring alive, not in being important, purpose in commitment not in domination.

Presence in God , not in the world.

 A candle light burning

December 6th :

To Face

Perhaps the most difficult part is facing the the journey into darkness : the darkness of suffering, the darkness of not knowing , the darkness of contradiction, finding that one step forward is often two steps back, the darkness of isolation, poverty, the darkness of being unable to bear touch , light, sound, most food, the darkness of multi-system dysfunction, the darkness of political, medical and corporate oppression.

Paradoxically it is those who suffer and love, who shine so brightly in the world. No wonder Jesus said the only sign he will give is the sign of Jonah; those who have endured and come through the belly of the whale.

Every day, with Very Severe ME is a massive struggle on every level.

In order to live, in the moment, find hope and peace, it is essential to face every situation, every difficulty, every moment, with light in your heart.

To do this gracefully, the most wonderful thing you can do each day, is to turn your face to the face of God and be bathed in the light and love of His Radiance pouring out to greet you. This is not some sort of imaginary act, rather it is a looking up, from within yourself and connecting utterly with the most wondrous presence possible.

A healing balm will flow through you, from this spiritual connection and the loveliness of the Light of His most radiant face. Amen.

 A candle light burning

December 5th :

To Defy

We survive through defying any expectation , from ourselves or others, that we give-up or despair, that we submit to any psychiatric ideology, that we abandon our struggle for a proper biomedical service for people with ME.

God leads you to defy all death-making and to focus on light ; that light is the Life of men. God is at the centre, at the beginning , in all of us and we are in God. By focusing upon life, so we embrace light and live ourselves more fully in His grace.

By living in the light, the light illuminates all that is wrong, all that is untrue, all that is death -making in the world .

As we live in the light, the light shines brighter within us and radiates out more to touch others with truth, wholeness, hope, radiance, protects us and keeps us safe, even in the most difficult situations.

The light calls us to defy all that is evil and to seek the truth always, strengthened by love at the centre of our being.

That does not mean it is easy, for we are frail and fragile and wounded and easily damaged, yet God calls us to a higher place and a straight path, focusing always on life.

His blessing for Advent is the Hope of the Light of the world , coming to live with us here in this place and be with us always, Amen.

 A candle light burning

December 4th :

To Dare

Daring is required on so many levels, both personal and spiritual, when you live with ME. You need to dare , just to look at your situation.

You need to dare, to look within.

You need to dare to seek within the chaos, for peace, for balance, for clarity, for union, for hope.

You need to dare to seek God in all your hurt, in all your anger about the injustice, in all the distress and confusion.

You need to dare to challenge injustice and wrongness, that affronts and assaults you daily in regard to ME. The world has got it so wrong about ME, for so many complicated reasons.

You need to dare to seek for healing.

You need to dare even to hope for healing.

You need to dare to confront all that is not true both within and without you and when you do, you will find that at the very centre, even if it feels very small and hidden, there is a spark of light, a grain of love, a blessing, of unity, with all that is good and noble and true; with God and life itself.

When you dare to seek God within you ,to help, to strengthen, to sustain and guide you, you will find that God answers with awesome power and majesty and energy, so desperately needed in this difficult place that you exist.

To dare is to live, to believe you can, and that you will find a way. To dare is to be church rather than attend church, is to live in the Kingdom rather than talk about it.

To believe in Hope and Love is to dare indeed; that daring is always rewarded with goodness. Goodness , opportunity, possibility, empowerment; things we all need so much, just to dare to live with ME.

 A candle light burning

December 3rd :

To Confront

In all situations of confrontation, turn to God, to lead and guide you, to fill you with the Spirit, to strengthen and to comfort you. Ask for His Light to shine upon you and to pour into every situation , within and without yourself, where confrontation is required or occurs.

Have trust in the Lord to lead and guide you through every difficult moment: confrontation is not easy to deal with.

First ask yourself what do I need to confront in myself ? What fears are blocking me, what hurts confuse me , what truth do I need to uncover ? But always remember that the Lord is with you and His power to heal and help is great.

It is not easy to confront yourself or others. Ask for truth to guide you, ask for His light to shine brightly, illuminating a straight path ahead. Ask for humility and awareness, honesty and integrity to guide you. The important thing is to reflect and keep reflecting on Truth and to remain true to your path, which is Love ultimately.

In our situation , with Severe ME, we are constantly under threat from ideology, whether that is corporate political or medical ideology. We have to confront that ideology if we are not to be a victim of it; to stand up and to expose the truth.

To confront is what Jesus did. That is why the establishment saw him as such a threat. To confront is not easy. It requires inner strength and awareness. It requires a clear faith and and clear sight. It also requires a commitment to not compromise the Truth.

It also requires humility if you find you are wrong or that there is a greater truth before you. It is not always an easy path. You may be seen as a threat and a nuisance. You may feel battered attacked and alone. But the Truth is You are never alone with God. You are held in the power of the Trinity , the awesome heart of Love.


 A candle light burning

December 2nd :

To Challenge

The greatest challenge, because the whole environment surrounding ME is very negative, is to see your own strengths, growth, beauty, to see what you are achieving. If you put your faith in someone coming along with a cure, or knowing what to do or providing the way forward, then you may be disappointed when things do not work out as you hoped.

The challenge is to see your situation with new eyes and always with a sense of wonder. This comes from embracing the mystery of life in its wholeness and entering each day with freshness and new vision.

The challenge comes in holding onto God and seeing Him clearly, despite all the distractions, torments, hassles, wrong paths and general consternation that life brings. One way, though not an easy way, is to stay focused on your heart, immersing every situation in love and singing God's praise, even if you don't feel like it and you wonder what He is doing, when things seem to go wrong.

To sing a song of praise, in the midst of grief, pain and suffering is the greatest challenge but it will touch your heart with joy, peace, hope, goodness and lift you into a new dimension.

 A candle light burning

December 1st :

To Bear

Sometimes it seems as if all the problems, all the difficulties, all the stresses and strains that impact our lives, get confused with life itself. Problems and difficulties loom so large, they oppress us, rule us, fill our minds with fear, distress and disturbance.

We bear a heavy load of suffering : the weight of oppression; the snails pace rate of change; the domination of the psychiatric lobby , plus the influence of powerful vested interests. It can easily feel like that is all your life has become.

The candle on the left, was lit this first day of December. Take a moment to be very still, place your mind and your heart in the love and knowledge of God, present with you; may the light bring you to new awareness of life and remind you that your life is so much more than the problems and the hurts that you bear , that your life is a thing of beauty and precious and a gift from God.

God is beyond words. God is the breath you breathe ; you are so close to God. Sometimes you have to look up and see God. You have to look within and find God. God is your breathing in and out. We don't bear the suffering on our own. We can rise above these things. The Holy Spirit works to smash the chains of oppression , to heal the sick, bring freedom, liberation, break down the walls,to empower us.

Through the power of the Holy Spirit, we are doing God's work : we shall triumph and we will overcome. We are not bearing all this suffering alone. “Our burden is Light” this is the message of Advent.

Let us take this time to be still and find His power working in us. Amen.