The Anthony Nolan Trust is a UK charity that focuses on leukaemia and bone marrow transplantation. It manages and recruits donors and is always looking for more people to add to the register (aged 18-40) especially young men and people from black and minority ethnic communities.
Campaigning journalist, Adrian Subdury sadly lost his battle with leukaemia but his legacy has gone on to inspire thousands of people to join the bone marrow register.
Adrian spent the last weeks of his life campaigning to make education on bone marrow, blood and organs complusory for 17 and 18-year-olds in all UK sixth form colleges.
I registered with the Trust some years ago and can honestly say that apart from the blood test there’s nothing to it. Find out more at ‘Why join the register?’.
When the Willard Psychiatric Center, New York, closed in 1995 workers discovered hundreds of suitcases in an attic and uncovered lives long forgotten. Unfortunately living outside the US I won’t be able to see The Willard Suitcase Exhibition but have found the online exhibit The Lives They Left Behind which provides a deeply moving account of people whose lives, once filled with hope and promise and aspirations, were never to be the same again.
In two weeks time I’ll be in the midst of discussion as the Church of Scotland’s National Youth Assembly delegates consider the enormity of what relationships are all about.
When I was asked to co-ordinate this particular topic it seemed like a good idea but, as is so often the case, now I’m not so sure I can do it justice (it’s a self-belief thing and I’m working on it!). Alternatively, when I consider some the preparation to date and the discussions I’ve had with my team, I believe we can.
For me relationships are about connection. Not only with those we love and who love us but with the wider community, the people on the fringes of our society, the ones we sometimes choose to ignore. Sadly the truth is that because we’re flawed individuals we do make choices based on our values and beliefs whether we’re conscious of that or not. Is loving one another really so difficult? It would appear so. It’s not easy to say that as Christians we’re not always so tolerant.
What are the characteristics of an assembly of people who care?
Jesus led by example when he mixed with the ignored, stigmatised, diseased, misunderstood, judged and condemned? Was it ok for Jesus but too hard for us? The truth, again, is yes it is sometimes.
Seeing others with a compassionate heart will mean stepping outside our comfort zones and stepping into a world of uncertainty and doubt. Demonstrating God’s Grace by showing commitment, empathy and a willingness to see beyond the divisions that separate may leave us feeling vulnerable, uncomfortable and not in control. But maybe that is what’s needed to create a community based on honesty and caring without any conditions attached?
So who’s entitled to a meaningful and worthwhile life – a life of hope and opportunity where relationships play an integral part? A selected few or everyone without exception? How can we dare to play a part in that?
A few weeks ago I was in the library searching for something or other and in my travels came across this wee gem of a book which I’d recommend to anyone interested in mental illness, especially depression.
In the eighty four pages of Darkness Visible: A Memoir of Madness, William Styron describes his descent into depression through reflection on melancholia, despair, physical ailments, social phobia, alcohol, therapy, hospitalisation and eventual recovery. He gives an extremely moving account of his preparation for suicide, feeling like an observer to an oncoming disaster in an almost theatrical fashion. His attempts to write a farewell note seemed too ridiculous for they sounded either pompous or comical so he tore up all his efforts and resolved to “go out in silence”.
“Late one bitterly cold night, when I knew that I could not possibly get myself through the following day, I sat in the living room of the house bundled up against the chill; something happened to the furnace. My wife had gone to bed and I have forced myself to watch the tape of a movie in which a young actress, who had been in a play of mine, was cast in a small part. At one point in the film … the characters moved down the hallway of a music conservatory, beyond the walls of which, from unseen musicians, came a contralto voice, a sudden soaring passage from the Brahms Alto Rapsody.
This sound which, like all music – indeed, like all pleasure – I had been numbly unresponsive to for months, pierced my heart like a dagger, and in a flood of swift recollection I thought of all the joys the house had known: the children who had rushed through its rooms, the festivals, the love and work, the honestly earned slumber, the voices and the nimble commotion, the perennial tribe of cats and dogs and birds … all this I realised was more than I could ever abandon, even as what had set out so deliberately to do was more than I could inflict on those memories and upon those, so close to me, with whom the memories were bound. And just as powerfully I realised I could not commit this desecration on myself. I drew upon some last gleam of sanity … “
The journey continues to amaze and confuse me. I have no idea where I’m going or indeed why I’m really on the journey except that it feels right. The destination? Not sure but I’m getting closer.
As my journey continues I’m not only struck by the differences in us but also that illness is a great leveller. This is especially true in mental ill health. Patients come in all shapes and sizes and from all walks of life: educated; articulate; well off and not so well off; those with learning difficulties and with physical disabilities; people living amidst a backdrop of poverty, abuse, powerlessness and sheer desperation. For a lot of them getting through the day is an achievement … for us it’s a place to start.
Psalm 139 tells us we are ‘fearfully and wonderfully made’. Yes we are. Nothing can convince me otherwise and I see evidence of God in the debris of someone’s life as I try desperately to understand the complex issues that contribute to their brokenness.
Some will recover and many will get better … until the next time.
Others will struggle on secretly hoping that their turn will come soon. That somehow, the healthy, meaningful and worthwhile life so many of us take for granted, can be theirs to treasure.
How can I let the week go by without mentioning Seamus Heaney. This wonderful poet was a guest on Andrew Marr’s show on Sunday morning and read from the chorus at the end of The Cure at Troy, his version of The Philoctetes, by Sophocles. Unfortunately I can’t find a video recording of this so the words minus Seamus will have to do.
Human beings suffer,
They torture one another,
They get hurt and get hard.
No poem or play or song
Can fully right a wrong
Inflicted and endured.
The innocent in gaols
Beat on their bars together.
A hunger-striker’s father
Stands in the graveyard dumb.
The police widow in veils
Faints at the funeral home.
History says, don’t hope
On this side of the grave.
But then, once in a lifetime
The longed-for tidal wave
Of justice can rise up,
And hope and history rhyme.
So hope for a great sea-change
On the far side of revenge.
Believe that further shore
Is reachable from here.
Believe in miracle
And cures and healing wells.
Call miracle self-healing:
The utter, self-revealing
Double-take of feeling.
If there’s fire on the mountain
Or lightning and storm
And a god speaks from the sky
That means someone is hearing
The outcry and the birth-cry
Of new life at its term.
‘Perspectives on the Human Experience through the Arts’ is my chosen options module this semester and it’s a challenging one. This module is based on the belief that for health professionals to learn what it is to be human they need compassion and appreciation of the uniqueness of individuals. Studying the arts and humanities helps us do just that and though it may sound like the easy option in an otherwise heavy academic year or ‘time out’ to some, it isn’t. Seriously.
By exploring a range of materials, including individual pieces of work created by survivors, we are encouraged to enter into their world and by doing so recognise the things that make us human: vulnerability, individuality, personality, imagination, passion, spirit, breath …
We explore the many different experiences found in childhood through adolescence to old age and end of life issues and discuss the difficulties people face and the reasons why they do what they do in a world that has become too harsh for them to bear.
Reality shocks and not for the first time my awareness is heightened. Most of the material isn’t an easy read and with or without the compassionate heart, one cannot help but be affected.
This poem is from The Memory Bird(1996) Edited by Caroline Malone, Linda Farthing and Lorraine Marce. Published by Virago.
Bleeding
As I watch blood ooze from my vein
Slowly the droplets anaesthetise my brain
The screaming in my head gently subsides
Calmed and sedated, almost mesmerised.
I am losing the struggle to survive
I have to bleed to know I’m alive
The tramlines of war scar my skin
The only sign of battle within.
My life drips on to the barren floor
Tears flow in rivulets under the door
Numbness spreads right through my core
Where is my energy to fight for more?
But these are not for death but life
Do not be alarmed at the way I strive
Marks on my body are a small price to pay
For freedom from Hell and a new dawning each day.
B+ 