Growing up Scratchy - Living with Eczema

For the last 40 years I have lived with a fairly low profile but very high impact disease - eczema.  It's difficult to explain to somebody who doesn't have eczema just how much it affects your life.  Perhaps the best way of explaining what eczema feels like is to explain that it comes from the Greek word 'ekzein' which means 'to boil'.  Eczema at its worst feels like your skin is on fire.  Incredibly 1 in 5 children and 1 in 12 adults in the UK suffer from eczema.  There is loads of different information about the different types of eczema here.

Eczema is a 'non-disease.'  It's not high profile or life threatening so the medical response is patchy and poorly resourced.  I may be paranoid but I can't help feeling that some of the doctors I have seen seem to imply that I could be doing a lot more to help myself.  A recent consultant gave me the third degree for missing my patch tests (we were on holiday at the time).  While this is my own experience our son Alasdair has a very supportive GP and dermatologist at the moment.

I had fairly extreme eczema as a kid but have always suffered with bad eczema on my hands as an adult.  At best it can be irritating but at worst it can be debilitating and can make work complicated.  Last year my hands become infected 5-6 times over the summer and autumn.  Large blisters appeared on my hands and my fingers became infected.  I lost 3 nails on my right hand with the infection and was on non-stop anti-biotics for months.  The result?  After about 25 years away from dermatology I am back on their books. 

The smell of cold tar and the familiar names of dermovate, betnovate and eumovate are part and parcel of the Dermatology Dept at Lauriston and it feels like I've never been away.  There is an almost Victorian feel to the Dermatology Department with a complete absence of any high tech equipment.  The Victorian feel is backed up by the patriarchal system of male doctors giving instructions to an army of female auxiliaries who fetch and carry files and take blood samples from willing victims.  My first visit back to dressings after nearly 25 years away involved red paint being dabbed on my cuts, cold tar smeared on my hands and walking out with mickey mouse gloves.  I had some strange looks as I sipped coffee in the Elephant House before going in to the National Library!

Last Saturday we attended our first family weekend with Eczema Outreach Scotland.  It was great to meet other parents affected by eczema and hear some fairly familiar stories.  The event was in the Howden Park Centre in Livingston and while our boys politely declined the dance workshop they had a great time at the arts and crafts (no. 4 son Ali was a bit scratchy and shy).

As with so many inspirational charities, Eczema Outreach Scotland, was set up by one mother frustrated with how little support there was for families affected my eczema.  The founder is called Magali Speight (pictured below with Kirsteen) whose daughter suffers from eczema.  Magali proves what one person can do with energy and vision.  After only one year the organisation has around 150 families who have received their welcome pack and attended their growing number of events.

Those with kids who have eczema are affected in all sort of ways - from sleep deprivation, food allergies, to endless hospital appointments and the usual round of comments in the supermarket as you explain that your son (or daughter) isn't a burns victim.  Most of us have experienced the frustrations of a less than zealous medical response.  I remember sitting in a consultants office with our 2nd son Calum around 7 years ago.  His face was red raw with weeping sores and he was screaming in pain night after night.  Despite this the consultant said there was nothing else he could do for us.  Not for the last time we walked out of a medical appointment feeling unsupported and very alone. 

Of our 4 boys 3 have eczema with little Alasdair (centre below) being by far the worst.  When we tell people that he has hardly slept all night for the last 3 years, people think we are exaggerating.  He can go through phases when after 2-3 hours of sleep he can be unsettled for the rest of the night.  At times I've gone in to work on 3-4 hours of fitful sleep.  Talking to some other fathers at the event last week, sleep deprivation comes up the most challenging issue.  Some spoke of being in medical jobs where a mistake could lead to disastrous consequences and found little support from their employer.

Is there hope?  Yes there is.  Kids can get better - there is always hope they can grow out of it.  Calum (10), despite having extreme food allergies has almost outgrown eczema apart from the soles of his feet.

Family is a huge help.  James (13) has eczema so has an incredible bond with Ali.  Often he will help him calm down when he is in a scratching fit. Use extended family to get a break, have a meal and have a good sleep!

As a couple it is important to work as a team.  If both of us are having a sleepless night it can be horrendous.  Better that at least one sleeps and the other tries to calm down the scratchy kid or that we take 2 hourly shifts.  All the couples I have spoken to say that having a child with eczema can have a significant impact on your marriage and family life.  Acknowledging this and talking about it can be first step to seeking more support.  If possible get other family involved so that even once a month you can have a full nights sleep.

Organisations like Eczema Outreach Scotland are excellent.  Bringing families together for mutual support is such a help and even though it doesn't solve the problem, at least people feel less alone as they struggle through. 

Assertiveness can help.  Some GP's don't routinely refer eczema sufferers to dermatologists.  If you are struggling, insist on a referral and keep fighting until you get one.  Once you see a specialist you will hopefully remain in the system until things are a little better.

Lastly, and most importantly for us, faith is a huge element of our life with eczema.  We believe in a God who hears and answers prayer and in a Saviour who knew what it was like to suffer.  We don't believe that suffering is meaningless but we believe that 'for those who love God all things work together for good, for those who are called according to his purpose' Romans 8 v 28. 

The Psalms are also a great comfort to us - in them we find a great reality and comfort.  Let me leave you with one of my favourites; 'You who have made me see many troubles and calamities will revive me again; from the depths of the earth you will bring me up again.  You will increase my greatness and comfort me again Psalms 71 v 20, 21. 

A Trip to Murrayfield and the Shiny Bubbles of Fame

We had a great weekend in the Murray house.  Saturday was taken up with a trip to Murrayfield to see the victorious Scotland Rugby Team beat Italy 34-10.  The tickets seemed out of our reach but a very generous benefactor donated some tickets to us.  We were sitting in the gods but Davie and Calum enjoyed their first rugby game all the same.  There was great excitement with some of the tries particularly Stuart Hogg's stunning 80 yard run.

It always amazes me how nearly 80,000 people can watch a rugby game, with no segregation and a plentiful supply of alcohol and yet there is no trouble.  Compared to the aggressive atmosphere of some of the football games I have been at in the past, rugby is a very pleasant day out and one I wouldn't hesitate to take the kids back to.

The weekend got even better when we turned up for church on Sunday and the boys found themselves sitting in front of Euan Murray from the Scotland Squad. 

Murray has never tried to be a celebrity Christian but doesn't shy away from his principles as this Guardian interview proves.  Here are a couple of paragraphs;

He [Murray] suggests that the path many professional sportsmen follow is "rotten". He tries to explain. "All the shiny bubbles," he says, holding out his big hands and shaking his head in sadness. "The money, the possessions, the fame, the great elusive relationship – all bubbles that appear perfectly spherical, all the colours of the rainbow. They're bright and shiny and light as a feather, and you chase them because it's good fun, but the minute you get them they burst and they're empty." He pauses. "I'd had enough of chasing bubbles."

What were the "bubbles"? "The attraction of all the glamour and glitz that society puts up on a pedestal and says is the be all and end all. All the tinsel, you know? The success. There are many ways of measuring success – it could be in popularity, the funniest guy, or the guy with the best scores, it could be money, it could be getting the best-looking girl, lifting the most in the gym, having the best clothes, it could be being the best rugby player in the world." He trails off. "It's not wrong to be funny, or have a great-looking wife. It's not wrong to have money and to want to be the best player in the world, but if that is your idol then that is wrong." (The Guardian, Thursday 4 February 2010).

There are so many stars who pursue the 'shiny bubbles' that Murray describes above and find that as soon as they have them they are empty.  The recent tragedy of Paul Gascoigne is testament to the elusive nature of a celebrity sport lifestyle. 

At the age of 25 Murray had everything that the world could offer and yet he had an emptiness.  After an accident in 2005 when he was knocked unconcious Murray began to read his Bible which began to challenge his lifestyle.  As Murray read about Jesus and the need for the new birth, he began to seek the Lord and came to know Christ in a personal way. 

As well as being open about his faith in Christ, Murray has always stood firm on the Lords Day which is so rare amongst high profile sports people and even most Christians nowadays.  My oldest boy James is a great fan of Eric Liddell so I'm very pleased that the boys have guys like Murray to look up to.  There is more from Ragged Theology on the Lord's Day here.

I know Euan doesn't seek the limelight but if you want to hear more about how he lives as a Christian and a rugby player you can listen to it here. 

Lunch with the Vicar of Baghdad

I met a remarkable man last Saturday - Canon Andrew White who ministers at St George's, Baghdad.  His church is involved in a whole variety of ministries through the Foundation for Relief and Reconciliation in the Middle East.  Every week St George's feeds around 500 men and women as part of their Food Relief Programme.  Every month around 2000 people attend their medical clinic which is provided free of charge. 

While we may be on slightly different pages theologically, the 'Vicar of Baghdad' was an absolute inspiration.  His church is a light in the midst of darkness and is bringing reconciliation to a fractured and divided city.  One of the only Christian churches in a violent city, St George's is famous world wide for leading community transformation.  What can we learn from this remarkable ministry in Scotland?



Canon Andrew White and the real Andy Murray

Perhaps one of the greatest tragedies is that so often the church in Scotland is not leading community change.  But that hasn't always been the case.  While Dr Thomas Guthrie (1803-1873) was one of the finest preachers of the Free Church in the 19^th Century, his greatest legacy was surely as a social reformer.  This is summed up on his statue in Edinburgh which declares he was ‘a friend of the poor and the oppressed’. His legacy extends far beyond the church and Guthrie impacted the whole country with his vision for the marginalised.  His legacy epitomises the two great priorities of the church; truth and love. 

When Guthrie was called to Old Greyfriars in 1837 he walked the streets of the Cowgate and the Lawnmarket and was appalled by the 1-2000 'ragged children' he saw all around him on the streets.  He wrote, campaigned, organised, spoke and inspired until these children were fed, loved and educated.  Guthrie didn't stand around wringing his hands, he got involved.  His memoirs contain the following quote which sums up his daily work; ‘…it was not the disease or death – it was the starvation, the drunkenness, the rags, the heartless, hopeless, miserable condition of the people – the debauched and drunken mothers, the sallow, yellow, emaciated children – the wants both temporal and spiritual, which one felt themselves unable to relieve – that sometimes overwhelmed me…’ (Memoirs and Autobiography, p 157).  It is encouraging to hear that even the great Thomas Guthrie got overwhelmed sometimes!



Food Relief Programme in Baghdad

Like Guthrie, we might despair about the needs of our communities today but Christians can (and should) be at the forefront of community change.  We sometimes think that most people went to church in the past but Guthrie talks about his early visitations in Horse Wynd in Edinburgh where less than 5 in 150 people ever went to church.  Guthrie saw some awful sights in his pastoral work.  Amidst the rapid growth and large scale Irish immigration, Edinburgh had developed the most awful social problems.  Many in the church wanted to ignore these problems but Guthrie faced them head on with a coherent Christian vision.

We all need each other and we all need strong cohesive communities.  Our cities prove Guthrie's point that 'the solitude of a crowd is the most painful of all.'  So many people (both in Iraq and Scotland) are living in fractured and broken communities.  To bring about community transformation we all need to get involved, we need to listen to local people and we need to help provide the facilities and resources that can help with community transformation.  As Canon Wright said of his ministry we need to 'love, love and love.'  It is hard to think of a better example of Christian love in action than St George's in Baghdad feeding and healing people.



St George's Baghdad

Most of all we need to be salt and light in a decaying world.  Creating community should be natural territory for Christians.  As Keller says 'God created all things to be in a beautiful, harmonious, interdependent, knitted, webbed relationship to one another.  Just as rightly related physical elements form a cosmos or a tapestry, so rightly related human beings form a community.  This interwovenenss is what the Bible calls shalom, or harmonious peace' (Generous Justice, p 173). 

It must be easy for Canon White to despair.  Guarded by a small army, travelling to church in an armoured convoy, members of his church being killed on a weekly basis would cause most of us to head for the nearest plane home.  But he continues to bring reconciliation to a bitterly divided city and nation.  Canon White is slightly more cheerful than his predecessor who came to Iraq about 2700 years earlier.  Despite Jonah grumbling about the mercy and grace of God, and bitterly complaining about the lack of air conditioning, the gospel impacted Nineveh in a powerful way.  Nearly 3 centuries later the gospel is still impacting lives in Iraq.  God is building his church and the gates of hell shall not prevail.

As Christians we should know what real, harmonious community looks like and feels like.  It is that shalom that Keller mentions - something we want for every community in Scotland (and Iraq).  Not just people reconciled with each other but more importantly with the God who lives in perfect community in the Trinity.  It can only ultimately come through the gospel influencing our nation and transforming individuals and communities.   But it won’t happen until Christians roll up their sleeves and get involved in our broken and fractured society.  If St George's can do this in a war zone, what excuse do we have in Scotland?



Jonah by Michelangelo