Death & the Maiden Guest Blog

Not only does Caroline Lloyd refers to Death and the Maiden as glamorous and cool (thank you Caroline!) she shares her personal and professional journey of grief. Experiences that became the motivation behind her new book: Grief Demystified. The book she wrote that she so desperately wanted when she had disenfranchised grief and had no idea that that was even a thing.

via The Grief Geek — Death & the Maiden

To read my guest blog on the Death and the Maiden website, please click on the link above, or here:

The Grief Geek

 

 

When grief is complicated but it is not complicated grief…

This is a letter written by a grieving daughter who would like to remain anonymous. She’s asked me to post this in the hope that it will help someone else in a similar situation.

Not all relationships are straight forward and ‘ideal’.  Ambiguous or complicated relationships can (but don’t always) lead to ambiguous or complicated grieving.  This is not the same as complicated grief which is different.

If you’d like to know more about why grief is so individualistic, or what complicated grief is, or have any other questions, take a look at my new book “Grief Demystified: An Introduction”:

Grief Demystified on Amazon

“Dear ‘Dad’,
I’m pretty confident you’ll be wondering why the inverted commas. Of the few communications I’ve ever received from you over the past 50 years, you have always referred to yourself as ‘dad’. My opinion is that the label has responsibilities and expectations that you have never demonstrated, so you are not worthy of that title.

Your daddy’s girl was left bewildered and devastated when you left without telling anyone when I was 6 years old. I thought I’d done something wrong and I was being punished. No-one told me any different. No-one talked about you, but I do remember your mother chasing you down the street with a bread knife threatening to kill you… that image pretty much sums up the memories of my childhood: violence, shouting, fear, neglect, suffering, confusion. I found out many years later, that you had left after coming home and finding my mother on the floor having taken an overdose of pills. I guess she couldn’t take your drunk or drugged up violence and the trips to the hospital any more.

I tried to get to know you when I was a teenager; I even emigrated to the country you were living in to do so. In hindsight, I was still seeking reparation for the ‘wrongdoing’ I had done that had ‘made’ you leave when I was 6. You rewarded my efforts by getting drunk every.single.night, vehemently denying everything you did that I witnessed as a child, and swinging for me with your fists. The irony of course is that to everyone else you were happy, generous and fun.

After trying and failing to build a relationship as a daughter with you, I moved countries. But you would get drunk and ring me to verbally abuse my life choices. I had sold out because I lived in America; you hated the country. I had sold out because I was the first person to go to university in the family; who did I think I was? I had sold out because I worked a lot and didn’t party like you; I was boring and ‘Americanised’. Eventually I moved and didn’t give you my phone number. After failing to build a daughter relationship with you, you wouldn’t allow me to even have an adult relationship with you.

The last time I saw you was when your beloved mother was ill, that was twenty years ago. You flew back to our home town to visit her prior to her death. I found out you were home because my mother received a phone call summoning me to a pub to see you. I went, as I always did; I never wanted a reason to feel guilty or accused of not being receptive to a relationship with you, even if it was on your dysfunctional terms.

After years of peace and quiet, you started sending me friend requests on Facebook that I kept rejecting. After a while your persistence paid off and I accepted you. But you never even say ‘happy birthday’ to me either publicly or privately.

I had to ring you 11 years ago to tell you that the grandchild you had never met was terminally ill. Your exact words are seared into my memory like branding on a farm animal, “shit, I’m having such a bad week, first an argument with my girlfriend, now this.” Your first thought was about yourself, the non-existent ‘grandfather’, you never asked about the three year old child that was dying of cancer, you never asked how your daughter was while she was watching her son die in her arms. Sadly, after 40 years of life, I didn’t expect anything else from you. That statement pretty much summed you up. I haven’t spoken to you since.

I hear that you have died. I had anticipated that at some point I would have to deal with your death and the ambiguous feelings that would arise. I was never sure how this would feel for me; would I feel nothing because we have a virtually non-existent relationship, or would I feel emotions because you gave me life? I have ambiguous feelings, which accurately reflect the ambiguous relationship we had.

They say your parents fuck you up, I would agree with that. But as an adult, you have the choice whether to maintain that status or change it. They may have given you a beaten up old car, but you sure as hell can choose to pimp that mother up. And that’s what I’ve done. So thank you for contributing to fucking me up, you provided me with an array of tools with which to understand complexities I may never have understood if I’d had two normal parents, a dog and a white picket fence.

One of those complexities is dealing with people who didn’t know you; those friends and your wife that you lied to about your past. They are sainting you online, sending condolences to the ‘family’ you never had any contact with, talking to you in ‘heaven’. Who am I to shatter their illusions?

That 6 year old girl will never understand why you didn’t love her enough to be her dad, and this 50 year old will always envy those that have a dad that loves and cares for them.

I did find a short letter you sent twenty years ago following your visit to our home town and the last time I saw you. It contained a photo of us together in that pub, and your words ‘all my love dad xxxxx’. It is the only tangible proof I have that you existed. It is the only tangible proof I have that you may have had some feelings towards me underneath that selfish persona. So, thank you for that, and for triggering some happier memories that I’ve managed to retrieve and receive comfort from.

I hope you Rest In Peace ‘Dad’, I love you now as I loved you then, because despite the pimping out, the bodywork always remains the same…”

As always, this content is copywrited and may not be used without my explicit permission.

Grief Demystified..

Please see my previous post about why I had to delete several of my informational blogs. In the meantime I’ve been busy putting all of the information from them, plus a whole lot more, into a book comissioned by Jessica Kingsley Publishers.
The book will be called Grief Demystified and explains everything you’ve ever wanted to know: do men and women grieve differently? why do we grieve for famous people? how do I know if I’ve grieved properly? and what to say to the  bereaved, plus many more questions answered.  It also includes a list of recommended bereavement organisations that provide online resources, offline support and signposting.  It also includes an extensive list of references if, like me, you are interested in furthering your knowledge in grief and bereavement from the experts.

And best of all- there are diagrams and photos for visual learners and the easily bored 🙂

I shall write more blogs soon about the myths that still pervade on social media, because I keep seeing misleading articles and outdated information…

Does it matter how we talk about illness, death & grief?

“When I die tell the world what happened.

Plain and simple.

No euphemisms, no flowery language, no metaphors.”

Immortal words written by Lisa Bonchek Adams (Lisabadamscom, 2014) before she died from breast cancer.

The terminology around grief, death, and dying led to a recent conversation about the language we use to refer to cancer patients.  This in turn has led to copious amounts of reading on this subject to try to determine if language is helpful or detrimental during illnesses, death, and grieving.  All of the newspaper articles, news items, and social media posts we have seen have one thing in common: we use our language as metaphors to refer to these events, more specifically in “war” metaphors and/or “journey” metaphors.  Although we are noticing a lot more donning of battle armour than compass reading.

You would have to be avoiding all social media or conventional media not to be aware that the words “battle,” “fight,” “lost,” “won” etc. have become synonymous with the experience of cancer.  Do they originate from the patients, carers, Health Care Professionals, or Journalists?  And does it matter who uses the labels; are they useful or detrimental.  These are the questions we found ourselves asking and looking for answers to.

The earliest written reference to this we could find was with regards to Susan Sontag who raised this issue in her book Illness as Metaphor in 1978 (Sontag, 1978).  In the book she challenged the prevailing attitude of patient control; does the patient have control over whether they became sick or could “battle” an illness? Her view was that illness is a biological condition and using metaphors to refer to the disease had a shameful or discouraging effect on patients.  As a cancer patient herself at that time, the notion that patients had some control over whether they developed certain diseases or had control over whether the treatment would work, or not, was offensive to her.

Following on from this in 1999, the late journalist John Diamond was referred to in the BMJ (McCartney, 2014), and quoted as saying “My antipathy to the language of battles and fights has….everything to do with a hatred of the sort of morality which says that only those who fight hard against their cancer survive it or deserve to survive it – the corollary being that those who lose the fight deserve to do so.”  So if the evidence points to respected journalists historically opposing such “battle” language, how did it become endemic within society?  Did it slowly creep in via other journalists or can we answer this question by looking at whether patients, their friends and family (carers), and/or healthcare professions (HCP) find the use of metaphors surrounding cancer useful in any way.

On a mission to answer these questions is Professor Elena Semino and colleagues at Lancaster University, who have spent the last few years studying the frequency of use of metaphors with regards to cancer and how they affect different people of the three groups identified above: patients, carers and HCP.  Her video lecture explaining the study and the results can be found here: https://t.co/KScIADr0ts .  They used sophisticated software to analyse 1.5 million words gathered from open social media sites and interviews, and confirmed that the two most common metaphors used were what she termed “violence” and “journey.”  We are all familiar with “violence” words – battling, winning, losing, fighting, war on cancer etc.  “Journey” words and phrases are also familiar – “it’s the start of a long journey,” “I’m on the road to recovery” etc.  Semino at el.’s (2015) findings were that language seems to polarise in this area; it is either hated or loved.

On the positive side, it is used by fundraisers such as Cancer Research UK who use journey metaphors such as “Race for Life” to inspire and encourage, and Macmillan who use “Survivorship” to motivate patients who have “beaten” their cancer.  Semino et al. (2016) also found that patients use journey metaphors “in a very empowering way” and violence metaphors are used by patients to find “purpose” and “meaning” by defining themselves as “fighters.”

Conversely Semino et al. (2015) found they can also have a detrimental effect.  Some people find they “don’t want to be on a road they don’t know how to navigate” and how do people with cancer battle with themselves?  Cancer patient Kate Granger (Granger, 2014) wrote in The Guardian newspaper; “‘She lost her brave fight.’ If anyone mutters those words after my death, wherever I am, I will curse them. … I do not want to feel a failure about something beyond my control.” Granger is a medical doctor and was diagnosed with terminal cancer prior to writing this article which makes you wonder how someone who knows they will die from an incurable disease can “fight” it?  I recall one of my friends vowing to “fight all the way” when he was diagnosed with bowel cancer a few years ago, but then again he was an ex-member of the British army so the terminology was part of his identity.  The “fighting” talk slowly waned as his cancer metastasised and it was clear that he was terminally ill. In retrospect, I wonder if he ever felt a “failure” for not “beating” it or if he ended his days satisfied that he had accepted any appropriate treatment that could have helped him and was accepting of his situation.

My point here is: however you choose to label yourself or what language you choose to use with regards to your body and your life is just that: your choice.  If you find battle or journey statements and metaphors helpful to deal with the psychological effects of being diagnosed and treated for cancer surely we should respect that.  However, I think if we impose it on someone that’s where the problems arise: we are imposing our expectations on them.  That they will “battle,” that they will “win” as if somehow it is within their control.  Contributing to making someone feel guilty or a failure is disempowering and surely unethical.

My conclusion is that there is the illusion of control with cancer if we use metaphors and perhaps that’s what someone needs in order to psychologically cope with the diagnosis of what used to be referred to as “The Big C.”  Does the thought of our impending death suddenly become a battle that needs to be fought?  We are one step closer to death every day, whether healthy or not, and we need to accept that as individuals and society.

If our loved one “battles” and “loses” their “fight” with cancer we are left to grieve their death.  With metaphoric expression there is the possibility that families and friends will be left wondering if their loved one did not “fight” hard enough or if they could have done more to help them.  This can potentially lead to further distress, anger, and guilt.

My view is that a good death leads to good grief and that can only happen if we discuss end of life issues open and honestly in whatever language is appropriate for each individual.  As end-of-life doula Anna Lyons (Lyons, 2016) says “Death is not the loss of a battle. Death is a natural part of life.

References

Granger, K. (2014, April 25). Having cancer is not a fight or a battle. Retrieved 8 May, 2016, from http://www.theguardian.com/society/2014/apr/25/having-cancer-not-fight-or-battle

McCartney, M. (2014). The fight is on: Military metaphors for cancer may harm patients. Retrieved 11 May, 2016, from http://www.bmj.com/content/349/bmj.g5155

Lisabadamscom. (2014, 10 October). Re-post of “When I die” – Lisa Bonchek Adams. [Weblog]. Retrieved 8 May 2016, from http://lisabadams.com/2014/10/10/re-post-die/

Lyons, A. (2016, March 21). “Hospitals are not a good place to die”. Retrieved 8 May, 2016, from http://www.netdoctor.co.uk/healthy-living/news/a26269/hospitals-are-not-a-place-to-die/

Semino, E., Demjen, Z., Demmen, J., Koller, V., Payne, S., Hardie, A., & Rayson, P. (2015). The online use of Violence and Journey metaphors by patients with cancer, as compared with health professionals: a mixed methods study. BMJ Supportive and Palliative Care. doi: 10.1136/bmjspcare-2014-000785

Sontag, S. (1978). Illness as metaphor. United States: Farrar, Straus & Giroux.