“Take care of your feet” has been the resounding advice and part of best wishes from all my friends and colleagues over the past few days, on hearing of the upcoming long walk. Guess what. All that distance and not a single blister. Regular trainers. Nothing fancy. Regular hiking socks and lots of ‘compede’ in the bag but none on the feet. My feet just don’t blister. Must be my thick skin!
Before the walk, I didn’t think I could do it.
Before Saagar passed away, I didn’t know I could survive it.
After the walk, I know I can even though at times it seemed impossible to go on.
Nearly 2 years after Saagar, I know I can, even though at times it seems impossible to go on.
Both of these experiences, while not comparable, took me right outside my comfort zone and put me in a very vulnerable and painful place. And I am still here, learning new things about myself and the world around me everyday.
A young man from Scotland survived a serious suicide attempt in May 2015. He suffers with depression. He is now cycling around the world to raise awareness of mental health and suicide prevention. His journey will take him to 80 countries on 6 continents. He calls himself ‘The Tartan Explorer’ (http://tartanexplorer.com/) and his name is Josh Quigley. Good luck young man!
About 5 months after Saagar’s passing, one of my close friends sent me a subtle message suggesting that I should be careful about what I write in my blog as a few of my work colleagues read it regularly and if I appear to be too fragile or vulnerable, it might have a negative impact on my professional life. I understood her concern. The medical profession is not known for its understanding and compassion for mental frailty in colleagues.
Dr Wendy Potts was a GP in Derbyshire who blogged about living with Bipolar Disorder on a regular basis. One of her patients read the blog and complained to her Practise. The doctor was suspended. A few weeks later she ended her own life.
Firstly, I don’t understand the basis of the complaint. Would patients complain if their GP had diabetes or cancer?
Secondly, I don’t understand the basis for suspension from work. If the doctor’s performance was not questionable, then there is no ground for that.
This is one of many examples of poor treatment of medical colleagues with mental health issues. I think we are a long way from seeing parity between physical and mental illnesses as the ones who are supposed to put that into practise are themselves caught in the stigma associated with mental illness.
(PS: apologies for not being able to insert the link to the article in a better way. The ‘link’ icon on my page doesn’t seem to work anymore. Any ideas? )
The stress vulnerability model was proposed by Zubin and Spring (1977). It proposes that an individual has unique biological, psychological and social elements. These elements include strengths and vulnerabilities for dealing with stress.
In the diagram above person “a” has a very low vulnerability and consequently can withstand a huge amount of stress, however solitary confinement may stress the person so much that they experience psychotic symptoms. This is seen as a “normal” reaction. Person “b” in the diagram has a higher vulnerability, due to genetic predisposition for example. Person “c” also has genetic loading but also suffered the loss of mother before the age of 11 and was traumatically abused. Therefore persons “a” and “b” take more stress to become “ill”.
This model is obviously simplistic. However it does help with the understanding of psychosis. Vulnerability is not a judgmental term but a different way to approach the variables involved. We all have a different capacity to take on stress depending on how vulnerable we are. At different times in our lives we can be anywhere on the curve, depending on these variables.
Increasing coping skills or altering environmental factors (family, work, finance, housing etc.) and specialist help can reduce vulnerability and build resilience. Attending a peer group may help to build self-efficacy, self-esteem and self-acceptance all of which may be protective against relapse and form a buffer to demoralisation. It gives hope!
As he speaks, it breaks my heart to watch the tears roll down this handsome young man’s cheeks. I admire him for normalising vulnerability. He shares how depression makes one believe that everyone would be better off without them. He thinks that the stigma associated with suicide comes from the ‘mystery’ associated with the condition. Those left behind search within themselves and ask many questions but there are no answers. It is impossible to not personalise it. That makes it very hard for us to talk about it as individuals. Because it is so hard to speak about suicide for us as individuals, it is the same for us as a society. But it is essential and urgent for us all to talk about suicide. It is of paramount importance.
How can we encourage people to do this?
By ‘normalising’ it.
Statistics say that 1 in 4 people suffer from mental ill-health. However this may be a gross underestimation as many people are not very aware of how they feel. They may not really know and recognise their feelings.
His advice for anyone who might be thinking of ending their life is – Tell someone. Tell anyone. Once you do that, the power of that thought over you diminishes.
(A young artist’s pictorial depiction of Bipolar Disorder)
Everyday I struggle with what it must have been like for Saagar. What state of mind did his illness create? Why couldn’t he find any words for it? How much of it was due to the medicines he was on? I have tried to imagine it and learn about it from various books and blogs. The closest understanding of it comes from reading the first hand accounts of those who suffer from Bipolar disorder. Their writing is as honest and as human as can be.
“It has been a fascinating, albeit deadly enemy and companion. I have found it to be seductively complicated, a distillation both of what is finest in our natures and of what is most dangerous. At first my illness seemed to be simply an extension of myself- that is to say, of my ordinarily changeable moods, energies and enthusiasms. I perhaps gave it at times too much quarter. And because I thought I ought to be able to handle my increasingly violent mood swings by myself, for the first ten years I did not seek any kind of treatment. Even after my condition became a medical emergency I still intermittently resisted the medications that both my training and clinical research expertise told me were the only sensible way to deal with the illness I had.
Manic Depression distorts moods and thoughts, incites dreadful behaviours, destroys the basis of rational thought and too often erodes the desire and will to live. It is an illness that is biological in its origins, yet one that feels psychological in the experience of it; an illness that is unique in conferring advantage and pleasure, yet one that brings in it’s wake almost unendurable suffering and not infrequently, suicide.
Medications brought with them seemingly intolerable side-effects. It took me far too long to realize that lost years and relationships cannot be recovered, that damage done to oneself and others cannot always be put right again and that freedom from the control imposed by medication looses its meaning when the only alternatives are death and insanity.”
– an excerpt from “An Unquiet Mind”, a personal testimony of her own struggle with Bipolar Disorder since adolescence by Kay Redfield Jamison, a Professor of Medicine.
An entire family of doctors, some of them psychiatrists, with 2 young men in the family who live with a mental illness, all get together every year and talk about everything except the illness. They often speak on the phone to each other about all kinds of things but never about the illness. There just isn’t the space for that specific topic. This happens with ‘educated’ families.
A highly qualified mental health professional who specialises in children and adolescents is someone I have known for years and is very close to our family. When Saagar was ill, I wrote an e-mail asking for help but there wasn’t as much as a phone-call to find out what the problem was. In this age of Facetime, Skype, Viber, Whatsapp and what not, the means of communication couldn’t have been a barrier.
What are the barriers? Is mere talking about it too uncomfortable? Is it too much responsibility to take on? Is it too difficult to accept that the problem exists in such close proxomity? Is it too scary? Is it shameful?
I just googled ‘Stigma’ and this came up on top:
a mark of disgrace associated with a particular circumstance, quality, or person.
“the stigma of mental disorder”
synonyms: shame, disgrace, dishonour; More
(in Christian tradition) marks corresponding to those left on Christ’s body by the Crucifixion, said to have been impressed by divine favour on the bodies of St Francis of Assisi and others.”
This is the society we live in. It is ours to keep or change. EP, my 81 years old friend is also a doctor. She lost her son to a mental illness in 1993 and has been working tirelessly for the last 23 years on the medical community to address this problem of stigma. She doesn’t use the internet but her beautifully hand written letter says:
“Not to give up is the first task. To support each other is the next priority.”
Edward was 18. He had recently been offered a place at Cambridge University following 12 A*s at GCSE and 100% scores at AS level. He also excelled at playing the piano. He was a popular and friendly young man who now has the heartbreaking legacy of having played all of the music at his own funeral. He ended his own life in February 2015 following the unexplained, rapid and catastrophic onset of depressive illness.
He sounds so much like Saagar. His father, Steve Mallen strongly believes Edward was let down by the health services, just like Saagar was.
“Sometimes they call depression the curse of the strong. In other words the stronger, more resilient, more intelligent and more capable you are, the better you are able to conceal the difficulties you might be experiencing,” said Mr Mallen.
“We mind what happened to Edward Mallen and we will do all we can to avert similar tragedies through the prevention and alleviation of mental ill-health amongst young people.”
Speaking to a friend in Bristol it emerged that CAMHS there now refuses to see youngsters who have attempted suicide. The charity Mind says on its website that the types of problems CAMHS is meant to help with include violent or angry behaviour, depression, eating difficulties, low self-esteem, anxiety, obsessions or compulsions, sleep problems, self-harming and the effects of abuse or traumatic events. CAMHS can also diagnose and treat serious mental health problems such as bipolar disorder and schizophrenia.
How have we come to this? In the light of the fact that the incidence of mental health problems in the young is on the rise, does the graph below on expenditure (in billions) on mental health services offer an explanation?
Wonder what it’s like to be 18 or 19.
To have a decent upbringing and great friends.
To have a sharp mind and many talents.
To find out life is complicated.
To learn relationships are difficult.
To know jobs are hard to find.
To have faith you can cope. To have hope.
To be ruled by an un-understandable mind.
To have no tools to dissect the goings-on within.
To hold a fascinating companion and a deadly enemy inside.
To be able to handle them both tactfully.
To have no way of showing them to others.
To not know how much of you is you and how much is them.
To believe you can conquer these beasts.
To hope you can make them beautiful.
To see them as extensions of yourself.
To watch them distort your moods and thoughts.
To love life one minute and abhor it the next.
To watch the clouds of confusion slowly shutting out the light.
To resort to silence as time goes by.
To watch your friends move ‘ahead’.
To feel left behind, small and inadequate.
To have to contend with the inaccessibility of Life.
To loose faith in medicines and trust in medics.
To be utterly lost.
‘Dying from a mental illness is just the same as dying from any other disease’ says Paulie O’Byrne, a young man from Canada.
Paulie suffered sexual abuse at the age of 19. It took a long time for him to get past his shame and tell someone about it. Many people didn’t believe him including his parents. He suffered with anxiety, depression and PTSD and took to drugs and alcohol in a big way to be able to cope with the pain. He felt suicidal on many occasions.
His recovery could only begin when somebody believed what he had to say. That’s his message – when someone tells you they have a mental illness or that they are suicidal or that they have been abused, all they ask for is to be believed.
‘As much as I love my support and friends and family, for me I would not call them. The reason I say this is because in my mind it would cause more hurt and confusion if I told someone close that I have a plan to end my life. I thank god every day for crisis lines- the humans that work for them are angels among us. I can boldly state right now I’ve called the crisis line over 50 times since 2010, and I’m still here. I’ve thought about ending my life on my birthday before, for the sole reason people will only have to feel sad 1 day a year, not my birthday and death day.’
He worked incredibly hard to get out of the dark place where he was. His counsellors didn’t give up on him and he didn’t give up on himself. He started a movement called ‘1 in 5’, the motto of which is ‘strength from pain’. He speaks and blogs about the high incidence of sexual abuse in men (1 in 5) in Canada and encourages other victims to come forward and speak about their experiences by doing so himself.
He lives in gratitude, one day at a time.
‘I am grateful for the fact that I can breathe.’
The Dragon Café is starting to feel like second home. Every Monday morning I look forward to going there for a cup of tea (and homemade banana bread) after work, meeting interesting people and being introduced to new dimensions of mind, body and spirit. Now I know some of the names and faces. I am turning into a regular and people are getting to know me too. It feels great.
This afternoon I attended a very simple but smart chess workshop and an art display by a Child and Adolescent psychiatrist and some of his patients. He talked about one of his patients with Selective Mutism, Megan Winton (self portrait above) who could not speak at all outside of her home but now does public talks on her artwork. He discussed their creativity process, the positivity of art and wellbeing and the crossover between service users and providers.
I also met with a passionate artist from a group called ‘Mental Spaghetti’ that brings together marginalised groups of society and the general public to help reduce stigma, enable social interaction and to encourage artistic practice in people of all abilities. They are working on an exhibition titled ‘Cross Pollination’ with the aim of blurring the lines of ‘Us vs Them’ (ie. service providers vs service users).
All those years I spent stuck inside a hospital building seem like such a waste now. We all are the same humans, yet there is a such a wide gap between the social model and the medical model of illnesses. I am intrigued to step out of my little world and see all these imaginative, inclusive and heart felt ways of dealing with people.
I wonder if Saagar would have enjoyed any of these things. I think he would have been a stunning percussionist and a very funny mimic. I think he would have had fun if he would have got this far. Oh! There I go again…