How I Learned To Code And Built A Cathedral

Time here is measured in the momentary spaces between the screaming, awful, unimaginable suffering.

We are almost completely isolated, just about everything you might consider “essential” has been stripped away. My world, the world of a full time Carer, caring this last twenty eight years, for his profoundly ill and disabled wife, is fragile and uncertain.

We go nowhere, not to church, not to any cafe for a coffee, not to the pub, we don’t go to the theatre or cinema, we never go on holiday, we don’t go out to any concerts, we never attend any family gatherings, we very, very rarely have any visitors, for my wife is far too ill. Out of necessity our diet is plain and basic, no alcohol, no treats whatsoever, no chocolates, crisps, cakes, sweets, we desperately have to avoid noise, perfumes, busyness; it’s a heartbreaking, impossible struggle.

My wife is intensely sound, light, touch, movement and chemically sensitive. The slightest thing, for example me making a noise or moving at wrong time can result in unadulterated physical chaos and terrible deterioration. Nothing, from moment to moment, day to day, is predictable or certain.

You learn how to be fully present, you learn how to move very gently, you learn how to be aware, you learn a great deal about love and what really matters.

At the same time, you are engaged in the fight of your life, you cannot afford to ever give up, for it is a ongoing struggle accessing appropriate, helpful medical provision. You learn how to dig deep, you learn how much more you are capable of, yet how broken and fragile you feel, when it is only you and your empty hands, wordless prayers and your capacity to bring some kind of healing or comfort.

Driven by a lifelong passion for learning, I have gained several qualifications, over these many years of Caring, including an MA in Moral, Personal and Spiritual Development. One thing I was really interested in, from the early days of the Internet, was Computers and the possibility of harnessing their vast potential to reach out to a hidden world. So I taught myself how to code. Little did I know what an amazing opportunity and what a delicious refuge it would be.

To me, losing myself in HTML, the language of the Internet, is akin to sinking into a warm, comforting bath. I guess it provides a much needed certainty and structure in my world and of course, like magic, I can crisscross the planet.

My campaigning and advocacy website, Stonebird, which I built after spending two years studying web design, has attracted way over 3.5 million visitors; just approaching its 15th birthday, it is a highly regarded source of information, worldwide, for people diagnosed with Severe and Very Severe ME.

The principle underlying Stonebird is extremely important to us. It 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.

Less known is its sister site, the website that I built for God, Holyway.

If Stonebird is about how to care, then Holyway is about finding light in the bleakest of places, but it is so much more than that. It is an immersion of your whole life in the Heart of Love, the Father, Son and Holy Spirit and finding a way to live with and in them as a path, which we term the Holyway.

Our own life has been particularly stark. Here, in this seemingly dreadful situation, here on the edge of society, on the edge of heath care provision, on the edge of surviving, where the spiritual and physical world meet, we have become immersed in the meaning of the Cross and found God present and utterly with us.

In unspeakable agony, Christ hung on the cross. Trying to hold on somehow, that is how Mary, His mother, stood with Him at the foot of the Cross. Outside, on the edge of society, that is where the Cross stood.

Stripped of everything, that is how my wife has been for many years, every moment an unimaginable moment of agony. Day after day, year after year, being there, loving her, wanting God to take away the torment, that is how I have been. Outside, existing on the borderlines, that is where we both are; sufferer and carer and yet our experience of God has been a profound awakening to truth and prayer.

Our learning has been this: when intense physical, emotional, spiritual or mental suffering comes to you, you have a stark choice. Either you enter more deeply into the meaning of suffering, where you find Christ, not just as a theological idea or someone somewhere else, but living, alive with you, more deeply than you could ever have imagined before this suffering came upon you; or you choose a path of fear and despair.

The aim of the Holyway website, which arises out of my wife's mysticism, for she has forged a deep theology of suffering, out of prayer, tears and fire, is to share all that we have learned about how you can meet the living Christ, who knows every moment of joy and agony and responds with love, through every circumstance throughout our lives.

Through Him, we find a closer union with the Father and a new aliveness in the Holy Spirit. The Holyway becomes a path, then, on which you meet and walk closely with the Trinity.

The website is the outcome of our long journey into the mystery of the Cross and beyond it, not just as an abstract idea, but as a very real tangible experience, over nearly three decades of suffering, every moment of every day.

Saint Pope John Paul 11, who was well acquainted with suffering, always emphasised the prophetic role that the sick and the afflicted have to play in the Church. All who suffer are held in the power and love of Christ that pours out from the Cross. Their knowledge of God is personal, vibrant and alive. That was the message of the late Pope’s great work on suffering Salvifici Doloris. Christ on the Cross reaches out to you and everybody, to every single pain, on every single level and offers it love, healing, forgiveness, redemption.

In encountering Christ you are given the strength and the courage to say "Yes". You are blessed in an outpouring of Spirit. You enter into what my wife has come to intimately know as the “Heart of Love”, the utter totality of love within and without the Universe, the three in one Heart, the Father, Son, Holy Spirit, flowing in unison.

She writes:

‘When we come to a place of intolerable, intractable suffering, the Heart of Love is a sanctuary that can, will and does hold us.’

The “Holyway” is our attempt to interpret ‘how’ to live in the Heart of Love; A way of love that is different and unique for each person. There is no specific path, although there are pointers and guides to help us along the way, especially when we get lost or stuck.

There is always new possibility to see things differently, to grow, to find renewal, understanding, acceptance, to embrace love in its purest form. That is what we have found and seek to share.

When I was building Holyway, I had an image in my mind of Medieval times, when they were building the great Cathedrals and I wanted this website to be majestic like them; I felt like I too was building a Cathedral. I wanted it to exude craftsmanship, to convey the beauty and wonder, the Power of God that I have come to know so intimately with Linda, my wife, through our journey into unrelievable suffering. Like Cathedral building, it will surely take me a lifetime to realise.

I have recently embarked upon the huge job of redesigning the site, to make it more accessible. Continually updated, it contains a wealth of material; we have a Blog, along with specific sections to immerse yourself in, when hoping to find God speaking to you or upholding and comforting you. All of it comes out of transcending deep suffering, struggle and prayer.

The Heart of Love has blessed us in innumerable ways. May it bless you too.

The Litany of the Heart of Love