Published in InterAction 70, Winter 2009
This month marks the first anniversary of the tragic death of Lynn Gilderdale (remembered below). Lynn was only in her 30s when she died with the help of her mother, who had campaigned beside her on M.E. issues for many years.
In September, one of our older members, Miss Pamela Weston, aged 87, also took her own life, this time at an assisted suicide clinic in Switzerland. She asked us to tell her story and, although some people may feel that to do so is simply not appropriate in the Christmas issue of a magazine which readers often call their “lifeline,” we felt we had no choice.
While suicide is a distressing and very complicated subject, the sad truth is that many people with M.E. consider taking their own lives at some point. M.E. is a very debilitating illness. The road to recovery can seem never ending.
But people do recover. For the majority, even those who are bedbound, there is real hope of a return to a good quality of life.
We cannot speak for Lynn but we know that, after nearly 18 years of M.E., Miss Weston felt that her health had declined to a point where assisted suicide was the only way forward left for her. She wanted us to use her story to draw attention to M.E., especially amongst medical researchers, to encourage them to seek out more effective treatments and a cure. We are doing all we can to fulfill her wishes.
In remembering Lynn and relaying Miss Weston’s story, we neither condone nor oppose assisted suicide. No case is simple, each person’s story is highly personal.
Our memorial article to Lynn is coloured by the imminent trial of her beloved mother. The family pain behind Miss Weston’s story appeared on the Sunday Times website, when her nephew, David Bremner, wrote: “I am Pamela’s nephew and while I support in principle the right to assisted suicide, and welcome her release from what was clearly an intolerable situation, the pain caused to her brother and sister, nephews and nieces by her choice to cut herself off from her family has been made worse by her deliberate choice to end her life without attempting any resolution.
“Suicide almost always causes more pain for those left behind than would be the case for death by natural causes,” he continued. “Those who provide professional help should ensure that all those affected by the suicides they assist are given full support.”
Support is available. Just some of the sources are listed on pages vi-vii. And as Cathy Stillman-Lowe’s article (please see below) shows us, people with M.E. can and do find ways to cope.
At Action for M.E., we will continue to focus our activities on improving the lives of people with M.E., committed to campaigning for more biomedical research, better services and greater support for people living with the illness.
You are not alone.
Sir Peter Spencer, Chief Executive
Remembering Lynn
A year ago, the M.E. community was extremely saddened to hear of the death of Lynn Gilderdale, 31, from East Sussex.
She died sometime between 2 and 4 December last year. Lynn had been severely affected by M.E. for 17 years. It is believed that she had attempted suicide on two previous occasions.
Her devoted mother, Kay, has admitted aiding and abetting Lynn’s suicide. She has denied a charge of attempted murder and one of aiding and abetting attempted suicide. Her trial is scheduled for 12 January.
In remembering Lynn, on the anniversary of her death, we share with you a statement issued by Lynn’s family soon after she died. They said:
“Lynn was young, beautiful, loving and caring. At the age of 14 years she was struck down by M.E. – an illness greatly misunderstood – and as a result, suffered the stigma attached to this dreadful illness.
“She fought long and hard for 17 years with immense bravery, enduring constant pain and sickness. Every system of her body was affected. She required 24 hour care that was provided by her totally dedicated mother, with continuous support from Lynn’s father.
“Lynn suffered many hospital admissions, sometimes lasting several months, for life threatening conditions.
“Prior to her illness, which left her paralysed, unable to speak, eat or drink and until recently, no memory, she was an active healthy teenager full of life’s dreams. She grew up in the Stonegate area, attending local schools and participating fully in her local community.
“She enjoyed sailing, swimming, cycling and was an accomplished musician.
“Her family praise and admire Lynn for her courage, which she showed to the end.
“She was a much-loved daughter, sister and granddaughter who despite her illness always gave love and support to others.
“In life Lynn strove to help the medical profession improve their insight into M.E. which affects thousands of people, in varying degrees of severity.
“Her dedicated mother, supported by Lynn’s family, has pledged to achieve her ultimate goal – for better understanding and recognition of this life destroying illness.
“Lynn’s family say her death will leave a massive void in their lives – and the love she gave so unreservedly, will be missed every minute of the day.”
Pamela Weston – in her own words
On 5 August, Action for M.E. received a letter from a long-standing member, Miss Pamela Weston. “I am 87, have had M.E. for 18 years,” she wrote. “It has become insufferable now and in September I am going to the Dignitas clinic in Zurich to end my life. If you think my story could be useful in pushing medical science to discover a cure, then please use it.”
The letter continued: ”I have had a successful career in music; for the first 25 years as a clarinet soloist, performing recitals for live audiences and for broadcast, then as a writer on the instrument and its great players.
“Writing and contact with other musicians have helped keep the mind off this debilitating illness. Periods of sleep during the day made this possible. Now, however, I can no longer do it, for the symptoms become increasingly worse.”
Action for M.E. wrote back, very concerned, asking if she was receiving treatment to alleviate her symptoms and suggesting sources of support. A number of letters and telephone calls followed.
While the situation was distressing for the staff involved, Miss Weston herself was focused and determined. She died in September at the Dignitas clinic, according to her wishes.
Miss Weston’s books included:
Clarinet virtuosi of the past, More clarinet virtuosi of the past, the Clarinettist’s companion, Clarinet virtuosi of today, Yesterday’s clarinettists, Eight clarinet trios of the 18th century and most recently, Heroes and heroines of clarinettistry (Trafford Publishing, September 2008). She also wrote a large number of articles and editions of clarinet music.
This is her story:
In August 1991, aged 70, I was in the Albert Hall when a friend kissed me – then afterwards announced that she thought she had flu. Obviously she had. She got better. I didn’t, perhaps because of my age.
I was wretchedly ill for about a fortnight. I had a young doctor at the time who was very inexperienced and didn’t know what to do with me. I was due to go on holiday for three weeks to see friends in the West Country. I went but felt awful, so ill I couldn’t read the road signs, so I came home.
Still the doctor didn’t know what to do with me, so I changed to another. The new one sent me to see a doctor at the Royal Free Hospital. He is the one who diagnosed M.E.
He prescribed injections once a month for six months. He did say it only suits some people and it might not help – and it didn’t.
During this time, for about the first 18 months, I would get a mild temperature every three or four weeks.
I honestly think I still have the virus, I really do. To my mind, M.E. is an immune problem. People have different symptoms because their immune systems work differently.
My symptoms have been the same all along – progressing, becoming worse. I have very bad sneezing attacks every few days, which causes sinus problems and sore eyes. My head feels awful and of course there is acute tiredness all the time and dizziness when I am up on my feet.
I have food allergies and although I have had extensive blood tests which gave me a list of foods to avoid, I still have problems. Tiny little itchy spots that move about the body. My current doctor says I just have dry skin. It’s not that. He is very kind but he has not been able to do much for me medically.
I don’t have ups and downs like many other people. The M.E. is always there and nothing has helped.
I have had a happy life
I was born 17 October 1921 in London and grew up loving music. My mother was an amateur violinist and I played piano. I left school at 16 with two O levels and I had no idea what to do with myself. I was due to study piano and singing at Dresden but War broke out. I was 20 when I heard Frederick Thurston play a Mozart concerto on the radio. So inspiring! The finest piece of classical music ever written.
My father had gone back into the Army as a doctor and we were in Bovingdon Camp. When I found out that the Bournemouth Symphony Orchestra were advertising a concert with Frederick Thurston, my mother and I dashed down there. Muggins here went straight into the artists’ room to find him. “I love your playing,” I told him. “Can I please learn from you?”
Wonderful times
I did a two-year graduate course at the Royal Academy of Music before I managed to get a scholarship to the Guildhall School of Music. Frederick Thurston wasn’t on the staff but he lived in Barnes near the Thames and he agreed to teach me privately. Once he had to cut short a lesson to go to the Albert Hall to play in the BBC Symphony Orcherstra for a Promenade Concert. He bundled me onto an open- top bus and gave me the rest of the lesson in the artists’ room when we
got there. I loved the Proms. When I was a student I had a season ticket. We were living in Hampstead at the time. I used to cycle to the Proms, stand through the concert then cycle all the way back.
I began performing as a soloist, playing the Festival Hall several times before I finished my scholarship. It was all enthusiasm and darned hard work. I used to practice for six hours a day.
Two years after I left Guildhall, the Principal wrote and invited me to go back as a professor. I was a professor there for 17 years. From 1947 I performed as a soloist, playing concertos, broadcasting, especially on the BBC. I even played for the Prime Minister, Clement Attlee, in 10 Downing Street. I was very, very lucky.
The ten years before M.E. were probably the most exciting time in my life. I had given up performing because of pain and lameness – I was born with a dislocated hip which an operation at 18 months didn’t put right, so my left leg is two and a half inches shorter than my right – but I found a new interest in research and writing. I had also developed my own teaching practice in a studio in my home.
I was travelling all over the world with a photographer friend, researching my books, meeting great clarinet players, many of whom are still my friends today. I gave lectures and masterclasses, too. It took me to Australasia, America, Italy, Germany, Russia, Iceland, Japan...
As a result, I was given honorary membership of the International Clarinet Association, the Clarinet and Saxophone Society of Great Britain, the New South Wales Clarinet Society, even the Moscow Clarinet Club.
Another highlight was in 1984, when I directed the only International Clarinet Congress ever held in England. My wonderful friend Richard Mühlfeld, grandson of Brahms’s clarinettist, gave a lecture about the grandfather with whom he shared his name. I was interviewed with him afterwards by the BBC World Service.
Diagnosis
The M.E. virtually put a stop to my public life. What brought it home was in 1992, the year after I caught the virus. I was in Arizona doing a series of university lectures when my voice just stopped – and unfortunately it was videoed. Being me I went on and the other lectures were all right but I had learned my lesson. I have quite a lot of difficulty now, talking with people. I can’t always get the words out.
I moved down to Hythe where I had a good lady doctor who said she wanted a second opinion. She sent me to Barts Hospital, London, to see a consultant. I remember he was late and he apologised. We got talking and immediately found that we both played clarinet. We talked for about 20 minutes. Then he took a whole hour going into my disease.
The consultant gave me tablets. He said exactly the same as the doctor at the Royal Free – we were just experimenting, they might or might not help – and again, they didn’t.
You learn tremendous discipline as a musician and that’s what’s kept me going. In my case it was less physical pacing, more mental pacing.
I also used transcendental meditation. I learned it about 20-25 years ago in a class in London, to help with stress because of all the lectures I was giving. I also found it a wonderful way to help jet lag. Whenever I crossed an ocean, when I got there I asked for a quiet room to go and meditate. Now I think about it, it would be a tremendous help for others with M.E.
Many people with M.E. have problems sleeping. I am lucky, I have no trouble there. I usually sleep in the second half of the morning and the second half of the afternoon. I’m so fagged out, I can’t help but sleep.
I wrote my last article in January, with quite a lot of difficulty. It was for the Clarinet and Saxophone Society of Great Britain and it was published in March. It was up to my standards but I knew I couldn’t go on.
There is nothing else I want to do. Nothing else I could do. I am too weak, too tired.
I have some wonderful friends but I am now so fagged out physically that it is beginning to affect my thinking. I have started stumbling over my words and I am losing my appetite. I have to push myself to eat.
If they could only get somebody to find a cure for M.E. The immune system needs help to tackle whatever attacks it.
I think a lot of people still see it as a psychological disease. In my case it’s entirely physical. If I had had depression, I couldn’t have kept writing professionally for 18 years.
The trouble is, M.E. is invisible – almost totally invisible – to others.
Deciding to go
I moved to a sheltered apartment in the countryside five years ago. People are very kind but there is nothing for me now. I have had four heart attacks in the past two years. I take some medication for that but nothing else. I want to keep my mind clear.
It was April when I decided to go to Dignitas.
I am happy I am going but it has been a terribly stressful process, all the legal and financial arrangements. Swiss law needs signed and witnessed affidavits to say I live here and I’m single and have no children. I need a letter from the doctor to say I am fit to fly. I’ve had four months of stress with all the things they require me to do, because they have to do it in stages.
I wouldn’t advise it to anybody. But I am quite certain that it is right for me. I go to Zurich by air ambulance on 7 September. Then I have to stay in a hotel for four days. It’s the length of time which is so awful. Originally it was much simpler, until Swiss law clamped down on it. It used to be 24 hours and they’d put you up overnight but now they can’t.
Their doctor has already said that I am a subject for euthanasia, there’s no problem there. But Swiss law says the doctor has to see me personally on the first day, then I have to have a day by myself to be quite sure. Then the third days she comes again and on the fourth day they give me the dose.
I don’t think anyone else in the UK who suffers from M.E. has gone to Dignitas. There have only been a few people from the UK, 115 at the last count.
I hope assisted suicide will come to England. It could be abused but it doesn’t seem to be abused in Switzerland.
Most of my friends support what I am doing. I don’t have any family (children) to come with me to Dignitas.
A few years ago I gave money for a three-year clarinet research scholarship in perpetuity. The current student is very worthwhile. She comes to visit with her parents. A good American friend doubled the money for the scholarship when he heard my plans for Dignitas, which is wonderful.
I’ve had a wonderful, happy life and very successful and I’ve been able to give something back and that’s what’s important. And after all, I will be 88 in October.
What I want now is for Action for M.E. to use my story to push the Government hard on medical research.
Life can get better. You are not alone.
M.E. can be an extremely debilitating illness and understandably, many people begin to feel so low that life no longer seems worth living. Cathy Stillman-Lowe looks at how members have coped during the dark times.
M.E. is far from easy to live with; apart from distressing symptoms such as muscle fatigue, post-exertional malaise, cognitive dysfunction, persistent pain, and sleep disturbance, people with this condition have to cope with the psychological stress of having a fluctuating chronic illness with an uncertain cause, progression and prognosis. The road to recovery can seem never ending. There may also be problems related to work, education, getting medical help and welfare benefits, and meeting family responsibilities, for example for parents who have M.E. and also carry the responsibility of caring for young children.
Michael says: “There were times when, whilst I didn’t want to die, equally, I didn’t want to live. There is a difference.”
As another person puts it: “This illness is so frustrating and isolating – and many of us lose so much of what most people deem to be a ‘normal’ life – it’s quite natural, at times, to feel it would be so much easier if it could all end right now!”
About a quarter of all people with M.E. will also experience true clinical depression alongside their illness, compared with one in five people in general. Depression is a serious illness in itself and is very different from just feeling fed up or miserable.
Some symptoms of depression overlap with those of M.E., eg. fatigue and lack of energy, sleep difficulties and poor concentration, so if you have both conditions, they tend to make each other worse.
As getting treatment for depression will make it easier to manage your M.E., it’s very important to seek a diagnosis and professional help, if you have had very strong feelings of sadness lasting for several weeks or months. Treatment could include antidepressant medication, and/or ‘talking’ therapies such as counselling, cognitive behavioural therapy or psychotherapy. Your GP should be your starting point and should be able to refer you for more specialist help if required.
Advice and support for people with suicidal thoughts and feelings, and their carers, friends and family, are also available from M.E. and mental health charities as described on p vii.
Finding a way forward
Several members had suggestions for dealing effectively with suicidal thoughts, grounded in their own experience. For example one person reported that: “I have found ways of coping – meditation, self-help books, music, M.E. yoga. Fortunately the black cloud does not sit on my shoulders all the time but hovers often just behind me.”
Another explained that: “If things are getting me down to such an extent that I consider suicide more seriously, I’ve found that if I think of a day in one or two weeks’ time to wait until, I usually find that by the time the day comes round I feel differently, or I’ve been distracted by something else that needs my attention and I wonder what I was thinking of.” This member rightly concludes that “having suicidal thoughts at times when every day is a physical and mental struggle... highlights the need for us to encourage each other, not be hard on ourselves and to treat ourselves regularly... because we’re all worth it!”
Diane observed that: “Now that I understand more about my M.E., I can see that when I am at my most tired, life does not seem worth living. Then gradually things change and I realise I am less tired and I am beginning to smile again and thoughts of the hopelessness of life just seem to evaporate.”
Elizabeth from Cardiff commented on the value of both friends and professional helpers. She says that a friend offered help should she feel desperate, and so “because I had an ‘emergency call-out out friend’ I found I didn’t become so overwhelmed; although I have never actually ‘called him out’ – it gave me security and a ‘pressure release valve’ knowing that I could.”
Later a professional carer provided invaluable help as well: “He doesn’t just do his job, he has a natural empathy, sense of humour, terrific memory and a natural sense of justice. Without his help and support, not only with the benefit system, I would indeed have ended things long ago.
“He lifted and carried the burden of the system, has supported me through tribunals, appeals and medicals, kept the roof over my head and yet even more importantly, every time the ‘system’ crushes me and leaves me drained physically, mentally, emotionally and yet another relapse, he’s there to pick up the pieces.”
As a person severely affected by M.E., Charlotte talked about her determination to identify and seek out constructive ways to ease her suffering, should she become desperate: “In two decades of illness I have had three serious suicidal episodes. Each time I contemplated – and even planned – suicide, I knew in my heart that I did not want to end my life. I simply wanted to end my suffering and could not see how to do the one without the other...
“Having come through such major suicidal phases I have learnt how to respond when I feel desperate. I have realised that to survive I need to identify exactly what is making life so intolerable; which pressures, which symptoms, which fears are pushing me beyond the point of endurance? With this insight it is possible to fight for answers other than death.
“Thankfully thoughts of assisted suicide/suicide are no longer part of my life. But I know that, should they ever recur, I will have to ensure that anyone who could possibly help to reduce the strain causing me to crumble knows how desperate the situation has become.
“It might need someone to offer more medical treatment, social care, work support, companionship or something altogether different, but if I am to survive I will have to find something. If I cannot tell all the people I need to, I will have to find just one person who will listen and then be vocal on my behalf.
“If I need to I will scream, sob and beg for some kind of solution before ever considering suicide an option because, if a way can be found to lessen the suffering, I don’t want to lose my life.”
How carers can help
Carers might worry about how to respond if the person they look after seems at risk of suicide. Warning signs to look out for include:
- feelings of failure, loss of self- esteem, isolation and hopelessness
- sleep problems, particularly waking up early
- a sense of uselessness and futility - feeling ‘what’s the point?’ suddenly making out a will or taking out life insurance
- a marked change of behaviour – becoming withdrawn and having difficulty communicating.
In response, remember to:
- ask the person how they are feeling and listen to the answer
- ask if they are feeling suicidal: giving permission to be honest is important
- keep the conversation going with open questions.
When someone appears to be absolutely determined to take their own life, it’s vital to examine every possible option and source of support. Create a personal support list including the names, phone numbers and addresses of individuals, helplines, organisations and professionals available for support. Persuade the person to keep this list by the phone and to agree to call someone when they are feeling suicidal.
Despite the physical and mental challenges of M.E., for many people with the condition, there is still hope, if not of complete recovery, then a return to a better quality of life.
As Charlotte says: “Most people can be helped towards suffering less and enjoying more... recovery or death are not the only two options.”
Information and support
For a list of helplines, including the Samaritans, see below. The following organisations offer useful publications:
The charity Mind has booklets on Suicidal feelings and How to help someone who is suicidal.
The ME Association publishes a factsheet on Depression and antidepressants.
The generosity of all members who sent in their experiences is gratefully acknowledged. Some contributors to this article preferred not to be identified.
Frightened by suicidal thoughts?
When people start to think seriously about committing suicide they can become frightened just because they are having such thoughts, says Counsellor, Gill Jones. But there are things you can do to help yourself when such thoughts invade your thinking.
Some people fear they must be going mad and others fear that if they are thinking about suicide, that means they’re going to do it.
It’s a very lonely place to find yourself in and for some, the fears stop them from contacting other people and they withdraw into an even more lonely place.
First of all, let’s get those two ideas of madness and inevitability out of the way.
You are not going mad. Life has become so unbearable that you are thinking of ending it as a way out. At the moment, there do not seem to be other options (but there are).
Thinking about suicide or planning to commit suicide does not necessarily mean you are going to do it. You are experiencing a powerful downwards mood swing that you notice quite suddenly. It may catch you completely unawares or it may creep more and more into your thinking over a period of time. However it appears, it can be frightening in its intensity.
There are two things you can do:
- tell someone you can trust about what’s happening – your doctor, a friend, relative, or contact one of the helpful organisations listed opposite. You won’t send your mood lower by talking about it and sharing your worries could help you to see them in a different light
- write about what is happening in a diary, letter, story, online in an e-mail, blog or on facebook, whatever works for you.
One of the best ways of getting through a personal crisis like this is to write about it. Writing helps to get thoughts out of your head and you feel less jumbled up. As your head empties of thoughts, you think about things you hadn’t had room to notice before.
People have found all sorts of ways of writing. Some simply make lists of words that are in their heads, others write a poem or a story about these thoughts happening to someone else (they somehow find words for something they can’t talk about if it’s happening to someone else).
Whatever you write, the action and effort required to do it helps you realise that you are doing something to help yourself cope with these difficult and painful thoughts and ideas which are in your mind. It is an achievement.
Keep on talking and writing for as long as it’s necessary. Don’t just do it once, and assume the thoughts will disappear. You haven’t ‘failed’ if they don’t go away immediately.
Help and support
More people die from suicide in the UK than in traffic accidents. For every suicide, 20 to 30 others make an attempt. People with severe illness and those who are isolated or live alone are more likely to consider suicide, especially men.
75% of those who take their own lives have not been in touch with mental health services in the previous 12 months. Many fear stigma or hospital, especially a psychiatric ward. Jo, from the Samaritans, says: “We provide emotional support to those in distress and those experiencing thoughts of suicide.
“We will not seek to find a solution for the caller, nor will we try ‘to make them feel better.’ We will however create a confidential safe place where they feel able to be honest about how they are feeling.
“We ask every caller if they are suicidal, as those who are may not be able to find the language to tell us, know where to begin or are too scared to say it out loud.
“We would not try to persuade a caller out of any decision but respect their choice. Working in this way allows callers to fully explore their feelings safe in the knowledge that they will not judged.”
Help if you are feeling suicidal
Confidential 24-hour befriending service, the Samaritans, offers emotional support for people who are experiencing feelings of distress or despair, including those which may lead to suicide. Tel: 0845 790 9090.
Support Line offers emotional support and details of support groups, helplines, agencies and counsellors throughout the UK. Tel: 01708 765200.
Childline is a free 24-hour counselling service for children and young people. Tel: 0800 1111.
The Counselling Directory features confidential listing of UK therapists and counsellors with information on their training, areas of counselling, fees and contact and location details.
Help for carers of the suicidal
Papyrus offers advice and information for parents, carers, teachers, professionals and friends of young people at risk of suicide. Tel: 0870 170 4000 or 01978 367333.
Survivors of bereavement by suicide (SoBS) is a self-help organisation for people bereaved by suicide, including a national confidential telephone helpline, help by e-mail, group meetings and information relating to practical issues and problems. Tel: 0870 241 3337.
Peer support
Other people with M.E. know how you are feeling. They are not necessarily experts in suicidal feelings but simply getting in touch with other people with M.E. may help you to feel less isolated. You can find your local M.E. support group in our services directory. You can also make contact with other people with M.E. online, via:
Helplines for people with M.E.
The 25% M.E. Group have a service (for their members only) run by people with severe M.E. Contact their office on 01292 318611 for more details.
The ME Association runs a helpline called ME Connect, which is open to anyone affected by M.E. Available Monday to Sunday, 10am-12pm, 2-4pm and 7-9pm on 0844 576 5326.
The Association of Young People with M.E. has a helpline for children, young people and parents/carers who are affected by M.E.
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