You are not alone

Published in InterAction 72, Summer 2010

The tragic cases of Lynn Gilderdale and Pamela Weston, reported in previous issues, have touched many people with M.E. Here are yet more insightful and poignant responses to the special report on suicide we published in InterAction 70.

Paddy Masefield OBE FRSA (pictured), sent us an extract from his speech to the Royal Society of Arts, celebrating the United Nations Day of Disabled People, on December 2009. Paddy says:

InterAction’s special report on suicide in its Christmas Edition should be praised for putting the spotlight on a subject too long hidden in darkness. However, it was very one-sided.

So though I remain an atheist, and firmly believe in my own right to suicide, I should like as a journalist to express another ‘silent’ story – that of those who choose to live. For as a campaigner for Disability Rights, I have come to realise that those born with illness or impairments – no matter how severe – are far less prone to suicide than those acquiring M.E. in adult life, who often feel some malign force has snatched away their birthright.

Me? I’m one of the luckiest alive. The first person ever in Uganda to survive cerebral malaria in infancy! By 13 I was my school’s underweight obstacle race champion! At 33 an internationally acclaimed theatre director and award-winning playwright: a career that behind its glamour led to two divorces, an 80 a day smoking habit, and a losing race with an alcohol problem. So I turned to marathon running at 40, only by 44 to lose all leg movement – alongside lack of access to my brain, speech, memory and writing.

Assumed by all to have a life-threatening brain tumour, when scans revealed I had not, I recall the depth of my sorrow that utter exhaustion and continuous pain were not to be ameliorated by a simple sleep-like death (in fact I had severe chronic M.E.). But had I then asked my caring relatives to assist in my suicide, I would never have met my three grandchildren. Nor more extraordinarily re-met and married my first ever girlfriend from the age of 15, just six months after being given, at the age of 60, a year to live with terminal cancer. Eight years on I have acquired psoriasis, sciatica and aggressive arthritis as well as two more grandchildren; travelled the world as a wheelchair user, who spends 18 hours of every 24 in bed (on good days), and in 23 years with M.E. become a nonexecutive director of more than 20 companies and a public speaker from Dublin to Delhi on the rights of disabled people.

I am lucky

So when I read of those who believe they have proof sufficient for suicide, I have two reactions. Firstly gratitude that while disabled people form one in four of the UK population, I am incredibly lucky to be in the one third of those with M.E. who has never experienced clinical depression – although a major collapse two years ago shows no sign of improvement to be free either of the need for constant care, or of pain.

But secondly that mine is not an untypical life. For the real truth is that the pain of both divorces was the sharpest I have ever felt, and the only time I felt justifiably suicidal. Living half my life with the conscience of having been party to an abortion has been infinitely harder than 23 years of settling into a wheelchair. Life consists of a chain of changes. No-one promised my mother, giving me birth, that my life would be free from excruciating pain. And some pain may well be involved in my death. But in the last eight years a treatment has been developed for my kidney cancer that may keep me going when my current remission fails. For I am determined to live as long as the practical evidence of my 23 years with M.E. needs to be taught to doctors, to persuade them to specialise in M.E. cures as well as cancer.

Paddy is the author of Strength: Broadside from Disability on the Arts. He is a long term member of Action for M.E., a former Vice-Chair of the ME Association, and he established the Hereford and Worcester M.E. Support Group.

Charles De Maria also wrote to us. He recalls: It was with great sympathy that I read and, may I say, understood the special supplement on suicidal feelings in issue 70 of our magazine.

I particularly remember a referral to the old Bromley hospital some years ago. Here the consultant listened and told me in a roundabout way that it was all in my mind and that I needed to do more exercise, and would not listen to me when I tried to explain that I thought I did more than the average person already.

In 1971, the familiar story begins with various symptoms over the years, and many tests. The sympathy from friends and relations which buoys one up at the start, begins to turn into disbelief on their part, and even sows seeds of disbelief in one’s own mind, as each negative test is returned.

At a crossroads

I left that consultation with tears streaming down my face, a man of over 39. At the main road I had to cross, I just stood looking at the traffic and all the buses coming along, longing for it all to end. If only someone would believe in me, and stand by me!

What held me back then from walking under the bus I just don’t know; perhaps consideration for the bus driver and others, certainly not fear for me at this point. I have always put others first.

It was only by accident some years later that I came across a book by Dr Anne MacIntyre: what a revelation! What a Godsend! As I read it, so much become clear, I was not alone.

I belong to Action for M.E., Sussex and Kent M.E./CFS Society and ReMember. I read as much as I can find, avoid ‘cures’ and try not to be a ‘professional invalid.’

No, I am not getting better, and there has been a lot of sadness in my life, but what I am now I would not be had I taken my life.

I no longer try and hide the illness, just say what I have: new friends can either take it or leave it. Strangely, new friends are far more accepting than old, perhaps because they did not know the previous me.

I am so grateful that the courage was found to continue.

Getting some help

Another reader, Martin, thanked the InterAction editorial team for publishing the special supplement on suicide, saying: It was a brave decision, and I believe a good one.

Although far from easy, the report should be essential reading for everyone. For those who are unfortunate enough to suffer from clinical depression, hopefully they may have seen some new ideas or rays of light where they can obtain help. Without specialist help, depression may lead to thoughts or actions of selfharm, and of course the ultimate act of self-harm is suicide.

However, I believe it’s equally important for other people to read this report. For the fortunate people who have escaped clinical depression in their lives, it’s a very difficult condition to understand.

Don’t bottle it up

If you have a friend who is depressed, you probably don’t know what to say or how to help. The worst thing you can say is: “Cheer up, snap out of it.” Depression is not an optional extra that can be turned off like flicking a switch. Forget the ‘mental’ bit, depression is an illness just like any other illness, except in this case it is the brain which is the affected organ rather than the lungs, stomach, liver etc. You can no more snap out of depression than you can snap out of swine flu, pneumonia or a broken leg, for example!

In my experience, anti-depressants do help – but your GP may have to experiment until you find the one that works for you. And people with M.E. are often over-sensitive to medication, so start on a very low dose and work upwards.

Depression tends to be isolating, so finding someone whom you trust and talking to them about your feelings can be highly therapeutic. Often it’s difficult to talk with your nearest and dearest about it, as they may be too close, so an understanding and discreet friend (or more than one) is a good way forward. Those wonderful people in the Samaritans are also waiting for your call.

Above all, try not to bottle-up your feelings within you. It is always good to talk with someone else who understands.

Assisted suicide law clarified

In February Keir Starmer QC, Director of Public Prosecutions, issued new guidance to clarify the law on assisted suicide in England and Wales. Assisting suicide is illegal and carries a jail term of up to 14 years. The new guidelines, which do not represent a change in the law, spell out the range of factors that will be taken into account when deciding on cases.

One of the key changes is the removal of any reference to the condition of the victim – whether they are terminally ill or near death – as a mitigating factor. Instead, the focus has switched to examine the motivation of a suspect when considering whether to prosecute anyone for assisted suicide.

Keir Starmer made it clear that relatives who actively help a terminally ill individual to die are not covered by the guidelines and individuals could be expected to be charged with murder or manslaughter.

The distinction means people like Kay Gilderdale could still face criminal charges. In January, Kay was found not guilty of attempted murder for aiding and abetting the suicide of her daughter Lynn (pictured), who died in December 2008 after living with severe M.E. for many years.

The law is similar in Northern Ireland and new guidance being issued sets out an almost identical framework. In Scotland there is some uncertainty as there is no specific law on assisted suicide, although in theory someone could be prosecuted under homicide law. A bill is expected to come before the Scottish Parliament soon in a bid to legalise assisted suicide.