Katie Belle pulled on her yellow T-shirt and headed for the Phoenix Park, where thousands of people sacrificed sleep for something more important…

THEY gathered in their thousands at The Papal Cross in Dublin’s Phoenix Park and at other venues around the country. Forty thousand in all turned their back on sleep and massed in the wee hours to lend support for a worthy cause.

The cause in question is Pieta House; an organisation set up to highlight and help prevent the tragedy that is suicide.

The emotion that dominated the event was hope; hope signified in the open expressions, the hugs and the laughter as people, dogged with tiredness, battle through regardless.

They persevered because the issue of suicide is much more important than sleep. At least for this morning.

The event, an annual one, is called the Darkness into Light fundraiser and all monies raised go towards the support of Pieta House, a suicide and self-harm crisis centre.

And there were reminders all around us as frozen folk squinted into the darkness and jumped on the spot to chase away the cold. People carried framed picture of loved ones who had taken their own lives; people cried, some openly as they walked; people sought support in the stories of others.

Sadness + Joy

Just before the off, Joan Freeman – the founder of Pieta House – drew stark parallels between the work of the organisation and the journey we were all about to set off on. She said this was the ‘start of a journey’; she talked of the ‘scourge of suicide’; and, most tellingly, she spoke of hope. A hope captured in the bright yellow T-shirts worn by the thousands who walked the route.

I live near the Phoenix Park. I run in the Park every day. But this was nothing like I had experienced before. The terrain was subtext to the event; the atmosphere was a confusing mix of sadness and joy, almost in equal measure; the anticipation of a dawn breaking held huge significance for the thousands in attendance.

The work of Pieta House, now more than ever, should not be underestimated. We are battling through tough times. Austerity is a wolf that stalks the streets and the homes and the work places of hundreds of thousands of Irish people.

For many of us there seems to be no end in sight, no help and no-one to care. And suicide appears to be the only way out. Sadly, tragically, the figures are increasing, as the cry for help turns into the final, awful action. More needs to be done.

And then, suddenly, the walk was over. The point was made. People hung around for a time, some wondering what they should do next. They had made a big commitment and an even bigger statement. There should be sometime more, surely.

But there wasn’t. The act in itself was the ‘something more’. The decision to go without sleep was the sacrifice. Their presence at this special gathering was the gesture of support.

Irish medical researchers have found a new way to help people with the condition known as lupus. Thomas Wilson reports…

WALKING into the research labs in the Royal College of Surgeons (RCSI), pictured, is a bit like walking down memory lane. They say the sense of smell is the major pathway for helping you to recall events long past; they could be right.

Nothing really changes in the world of research. Well, nothing changes quickly. The same sinks; the same beakers; the same concoction of fumes hanging in the air; the same sense of anticipation … something new could be discovered. And it could be discovered today.

Something new has been discovered by RCSI researchers and it will come as welcome news to people suffering from the condition known as Lupus.

First off…what is Lupus?

Lupus is what is known as an autoimmune disease; in other words, the body’s defences turn on itself. Elements within the body designed specifically to protect you turn rogue. Why? Well, doctors don’t really know. They have some theories which include the idea that it could be caused by an environmental factor, or it could be genetic in that some people are more susceptible to developing the condition.

Different Categories

Lupus falls into a number of different categories, including:

• Systemic lupus erythematosus (SLE for short);
• Discoid lupus – which affects and confines itself to the skin
• Drug-induced reactions
• Neonatal – the childhood version

Signs include achy joints, swelling of the hands and feet and a crushing fatigue and all these could point to the fact that you have lupus.

Lupus is, in many ways, a puzzling, mysterious ailment. So much so, that in 50 years there really hasn’t been any sign of a treatment breakthrough…until now.

Researchers at the RCSI have found that a new treatment for the inflammatory condition could potentially benefit Irish patients.

The research has been centred around a new drug called Belimumab; and what our doctors have done is to identify patients that are most likely to benefit from the drug, as not all patients may respond to the treatment.

“Lupus is a very complex disease and one of the biggest challenges, currently, is identifying the patients who are most likely to benefit from new drugs as they are approved,” says Professor Caroline Jefferies, the principle investigator of the study.

“Our research suggests that simply measuring BLyS levels (see below) in patients may identify those who will best respond to Belimumab, thus improving the long-term outcomes for these patients.”

There are in the region of 1,500 people in Ireland who have the SLE version of lupus. Some of these run the risk of developing organ damage as the disease progresses. This is due to the presence of high levels of a ‘chemical messenger’ called B Lymphocyte Stimulator (BLyS for short) in the body.

And it is this messenger that causes the body’s cells to produce antibodies that attack its own tissues which can, in turn, cause organ damage.

Targets Women

The Irish research was published recently in the prestigious journal Rheumatology and was carried out by Dr Eoghan McCarthy from Cork, under the watchful eye of Professor Jefferies.

The condition has a propensity to target women, with as many as 10 times more women being affected as men.

Dr McCarthy says this could be due to the presence of the female hormone oestrogen – and some researchers feel that this hormone could be a precursor for the development of the inflammatory condition.

• Belimumab is used to treat lupus patients who don’t respond to usual medication comprising of a combination of steroids and immunosuppressive anti-inflammatory drugs.

Rory Hafford drops into the Round Room in the Mansion House for the launch of a set of crucial Standards that will safeguard the dignity of people with disabilities…

THERE was a touch of Hollywood about today’s (Tuesday, 14th May) launch of the new HIQA guidelines governing the disabilities sector.

The Round Room of Dublin’s Mansion House played centre-stage to proceedings and was lit up with tiny pools of lights shimmering and shifting hither and yon.

When it came time for ‘action’, the lights were turned down on the audience, the room was plunged into blackness and an attractive blue hue bathed the main speakers on the plinth.

Minister Kathleen Lynch was there; so too was Marie Kehoe O’Sullivan, Director of Safety and Quality Improvement at HIQA; while Director of Regulation Phelim Quinn waited in the wings for his cue.

Giant screens frowned down upon the stage, one on each side, sporting serious messages highlighting the key points raised throughout the session.

And it all worked…for one main reason: this is serious business!

Looking after the rights of people who can’t look after themselves is a measure of the justice, equality and empathy of a society. If we can’t get serious, if we can’t get glammed up for something like this, then it will never happen.

Lot of Responsibility

It is estimated that there are in the region of 9,500 people with disabilities living in around 1,200 residential services. That’s a lot of bodies; that’s a lot of responsibility. And, given that Ireland is now one of the world’s most rule-based societies, that’s a lot of regulation.

HIQA stands for Health Information and Quality Authority, by the way. And that translates to a body that has been charged with looking after the way people/patients are treated by health service professionals.

It’s a busy time for HIQA because things are not, it would be fair to say, working all that well in the Irish health services. Far from it, in fact.

The Standards, launched today, outline to providers what they must do to ensure safe and effective care for people who are using their services.

“Children and adults using residential services have the rights to be safe, to receive good care and support and to have access to the services they need to enable them to live a fulfilling life,” Phelim Quinn told the gathering, in a clipped Northern brogue.

From now on, he said, these standards will provide those who use services with a guide as to what they should expect from residential services; they will ‘drive continuous improvements’ in these services, he promised.

Let’s have a look at the Standards and what it is they aspire to: the Standards are grouped under eight key themes and cover a number of crucial areas, including respect for the autonomy of the individual; privacy and dignity and the promotion of the rights of the individual.

It’s all very aspirational and all very noble. Traditionally it is hard to breathe life into such sentiments. However, the HIQA track record would suggest that this organisation has the expertise and the people to ensure that what they say will happen…will happen!

“HIQA will begin the registration and inspection of residential services for children and adults with disabilities against these standards and regulations later this year,” says Phelim Quinn.

“From then, all residential services will be required to provide HIQA with evidence of compliance with the National Standards and the regulations in order to remain registered.”

Pictured at the Health Information and Quality Authority’s National Standards for Residential Services for Children and Adults with Disabilities launch, were HIQA Chief Executive Dr Tracey Cooper; Minister of State for Disability, Equality, Mental Health and Older People Kathleen Lynch TD, who launched the Standards and HIQA Board Chairperson Pat McGrath.

 If you want to know more, log onto www.hiqa.ie

In Part 1 of a two-part series, Psychotherapist Doris Dash dives into a fascinating new book by Michael Trimble on why we fragile creatures like to tear up…

IT could be classed as an ‘old wives tale’, but when someone tells you that a good cry will do you the world of good…they have a point.

Why do we cry? It’s a question that has puzzled philosophers for the longest time. No other creature on the planet cries tears of emotion; just human beings.

It’s a mystery that has exercised the mind of psychologist William Frey, who decided to carry out a study on the issue back in the 1970s. He gathered together more than 300 adults (none of whom had any psychiatric problems) and he came up with some interesting stuff.

For instance, he found that the average frequency of crying was 5.3 times a month for women, compared to 1.4 for men. Ah…women!

Of considerable interest, however, was the fact that people in the study group reported that they felt happier after crying. Some reported that the act relieved tension, while others commented on the ‘cleansing action’ of crying, i.e. ‘washing out bad feelings’ and similar sentiments.

Chemical Analysis

There’s a ‘sexes’ component to crying: a study by Jeffrey Kotter found that men are less likely to ‘use tears manipulatively’ and that they cry in more subtle ways compared to women. By this he meant that men shed fewer tears and for a shorter duration; they were inclined not to explain the reason for their tears; and they said sorry a lot more (than women) for crying.

Okay. Good stuff. But why exactly is crying beneficial for you? And how does it release pent-up stuff to the point that you actually feel a little bit better for it?

Back to Frey for this one: he conducted a chemical analysis on the constituent parts of tears and reported that noxious chemicals, built up as a result of stress, are removed from the body during the act of crying (his considered view). He likened this literally to an excretory process…purgation by another means!

This has some associations with the theory of catharsis, a view that is linked to purification and cleansing. “In a slightly different version of these ideas, it has been suggested that tears drain off excess emotional energy, restoring a homeostasis,” writes Michael Trimble.

“This was a favoured theory of the early Freudian pre-psychoanalytic theories.”

Immediate Attention

Crying is built into our DNA. Interpretations emphasize the ‘communicative value of crying’. Says Trimble: “Crying, like a shout or a sneeze, attracts the immediate attention of others. Tears provoke an emotional response in the observer which, in the more sceptical view, not only elicits sympathy but acts as a manipulative tool.”

Tears have symbolism, for the one crying and for those who observe the tears, argues Kotter. They are woven from fragile, mutable memories with more than a hint of mortality.

Tears authenticate meaning; they reflect honesty; they reveal so much that cannot be said in words.

• In Part II of this feature, Doris Dash looks at the Neuroanatomy and Neurophysiology of crying

Jemma Morgan recalls the ‘hardest journey’ she has ever had to make –a boat-ride across to the UK for an abortion…

THE sea was choppy that morning. And it had that kind of dirty slate grey colour to it; a hard toxic colour that drains the emotion and leaves you feeling utterly depressed.

I remember the rain whipping in off the coast as the boat pulled out to sea. I remember standing on the deck, hanging onto the rail and getting absolutely soaked.

I remember feeling utterly alone. I also remember that I didn’t care.

Two weeks before I had found out that I was pregnant. I couldn’t believe it. It was like a bad joke. At any minute I expected someone to pop out with a camera and yell: ‘You’ve been framed!’ and then everything could go back to the way it had been. Normal.

But I hadn’t been framed. This was the new normal. And this was all wrong.

I was 28 years old. I wasn’t a kid. I had a job. A job that I liked. A job that meant I could support myself. For the first time in my life I had real independence. It had taken me a long time to reach that point; and it was a point in my life that I liked. I was comfortable with it. It reinforced my in a very positive way. Now, I stood to lose it all.

Two Options

The pregnancy happened as a result of a drunken one-nighter. Nothing new there. Except, it was just not me. I never thought of myself as that kind of girl. I was always extremely careful. But, on this occasion, I let my guard down. I made a mistake.

That way I saw it, I had two options: I could live with that mistake for the rest of my life; or I could do something to rectify it. Only, it wasn’t that simple.

With a heavy heart, I set about organising everything myself. I didn’t want to involve anyone. And this in itself is a heavy burden to carry. Just talking to you about it now, all these years later, feels almost like a positive experience. I feel lighter just talking about it.

But I know I will never feel light enough to the point that the heaviness will leave me. It is always with me. When I sit down to dinner, it sits down with me. When I climb into bed at the end of the day, it is there beside me.

We are a product of the choices we make. A fact of life that we can’t escape.

The procedure itself was routine enough. The people at the clinic were competent and professional. There wasn’t too much in the way of empathy. I suppose, when you do something day in day out you build up a kind of barrier to it all. Maybe. I dunno.

And then I was back on the boat; except, I wasn’t alone. Depression set in and has been my constant companion ever since. I felt a sense of emptiness. I felt desolate, like someone had dropped my off in a vast desert and drove away. I felt …

Blanket of Blackness

I went on anti-depressants for a long while; heavy medication that was designed to throw a blanket over the blackness. It helped, but only for a while.

I checked into a psychiatric unit for a month, where I was given more medication and the occasional psychotherapy session. It helped, but only for a while.

I didn’t feel that I was a bad person. I didn’t feel that I had ‘committed a sin’. It is like a dagger to the heart every time I pick up a newspaper now and see terms like ‘murder’ and ‘holocaust’ and ‘slaughter’. It’s like trying to negotiate an emotional minefield. And it’s not fair.

I wonder how many people – the people who are trying to stick labels on this – I wonder how many of them actually had to make that choice.

For me, this debate is all about control: control over what women do with their own body; control over how women should feel. I understand both sides. I do. Absolutely. There is not a day that goes by that I don’t think about what happened, about what I did, about what I lost and what I gained.

Inevitably, when the subject of abortion comes up, a great divide opens up. A chasm that cuts people in two. I find myself on one side of that rift, screaming into the wind.

Inevitably, the religious voice wants to make itself heard. And that’s as it should be. Everyone should be heard. But everyone should also be respected for their views and not blackened as a result of them.

When I think of religion – or more particularly spirituality – I think of a man called Jesus. And I think of him being whipped and beaten; and I think of the humiliation he suffered as he was dragged through dusty, unforgiving streets; and I think of a crown of thorns being driven into his poor flesh; and I think of him being hoisted up onto a roughly hewn piece of wood and the nails being hammered into his flesh.

And then I think of why. Why would an omnipotent being allow this horror to happen? And, for me, one word sums it up…choice.

This man symbolically died for me so that I could choose. And I live with that choice every, single day.