Traumatic Grief

I have written a chapter in my book Grief Demystified on the variants of maladaptive, or “complicated” grief and found this blog post earlier whilst scrolling through Twitter: Zuka’s Legacy

I thought this post was so well written from a first person narrative and provides a different perspective on the specific issue of a traumatic response to a bereavement.  Not all deaths, whether traumatic or not will result in “trauma” but there can be a traumatic reaction following a death.

This post was written by a bereaved mother after her son suicided and she has graciously consented to let me re-blog this:

PTSD is not the person refusing to let go of the past
but the past refusing to let go of the person
Post traumatic stress disorder or PTSD is a psychiatric disorder that can occur in people who have experienced or witnessed a traumatic event. For the full diagnostic criteria please click here.
Basically when a person has been through trauma, certain events (called triggers) can cause a person to have anxiety, anxiety attacks, or fear. They may avoid situations that may trigger memories, people with PTSD may have nightmares related to the event. It can cause depression, irritability, detachment from others, problems sleeping and problems concentrating..
PTSD is not always an exact replay of the actual event, it’s sometimes a replay of the emotions you felt during the event such as fear, helplessness and sadness (Alice Cariv)

I have had PTSD in the past concerning a bad car accident and a violent relationship with my children’s father but nothing as bad as Zuka’s suicide. When I was in the hospital I was diagnosed with PTSD, I was not surprised, I don’t think you can go through something like this and not have PTSD. I had nightmares every night until I went to the hospital and they gave me a medication to help with nightmares. A couple of incidents have happened that caused pretty major anxiety attacks.

The first one happened the first time we went out after Zuka’s death, We went with very understanding friends for support. It was really hard going out in public and never knowing what make you break down crying. We had a nice dinner and everyone was heading out but I decided to run to the bathroom real quick. On the way out the heavy wooden door banged behind me….Immediately I threw my hands up in front of my face, I was so afraid and felt like I was in shock, I started crying and ran out of there. PTSD can be embarrassing, all the way home I wondered what people who witnessed that anxiety attack must have been thinking.

The next incident occurred when I was at a get together and a guest (who had no idea what happened) brought in his new shot gun to show everyone, I was nervous but when he racked it, I did the same thing, threw my hands up, I was so scared, I started getting out of my chair to run out but my friend jumped up and yelled at them to take the gun out. I think they thought I was afraid of guns, I tried to explain and I was stuttering. It was a very traumatic experience for me, though no one is at fault!

I have had several other incidents, watching movies, loud noises, I just never know what will bring on flashbacks or anxiety attacks. The bad dreams haven’t been about the exact incident but they are about fear and loss.

If you have been through or witnessed a traumatic event that causes reoccurring bad dreams, fear, anxiety, avoidance of situation you may find fear inducing you may have PTSD
Here are some things that may help
Seeking professional help from a counselor, psychiatrist or doctor
Meditation and practice self soothing
Avoid drugs and alcohol which may make the issue worse
Talk about it to a supportive friend or family member
Medication; anti-anxiety medication may help
Take care of yourself, get enough sleep, try to eat healthy meals
Journal about the incident that causes the anxiety attack
be easy on yourself and do not feel responsible for an anxiety attack, it’s not something you can control.
Do some sort of art work or craft to soothe yourself
Here are 20 unexpected coping techniques for PTSD

Check out Kati Morton’s Youtube she has several videos on PTSD and many other mental health videos
Do you have questions, comments or anything you want to share, you can leave a comment below or email me at zukaslegacy@gmail.com

 

Miscarriage: Claiming the Narrative

It is with kind permission that I’m able to recreate the following:

Back in 1983, I found myself in an office toilet cubicle miscarrying a 14 week old foetus.  I had no idea I was pregnant because I was using birth control.  I had visited the doctor four times in the preceding two months, and each examination and consultation had resulted in a prescription for increasingly powerful pain killers.  I was given no ‘diagnosis’ or ‘treatment’ for whatever was ailing me.  Just a piece of paper for pills and sent away to just ‘get on with it’.  Despite the painkillers, towards the end, the pain was unbearable and the blood was uncontainable.

I walked to my workplace from the bus stop with blood running down my legs, thankfully it was winter, so I was wearing a long, heavy, dark coloured skirt.  I went straight to the ladies’ room.  The fact that I was in work, doubled over in pain, in shock, and possibly denial, meant that I just flushed my baby away and went to my desk to work.  This was pre-internet, so I returned to the doctor’s surgery several days later, was examined, and it was confirmed that I’d had a miscarriage.  I was sent on my way with a different prescription for contraceptive pills.

I was dazed and confused and wasn’t sure what to think or feel; it was an unplanned and unkown pregnancy.  When I finally confided in a friend a few months later, I was told it was a “blessing in disguise” because I didn’t have to choose between “ruining my life by having a baby at 18″ or having an abortion.  At that time, within my cultural environment, this was the narrative.  I was also told it was just a bunch of cells.”

I’m observing bereaved narratives on the internet over thirty years later as a PhD researcher, and whilst there are similar stories to the above that can be found, there has been a noticeable change.  Advances in technology have contributed to changing the landscape; home pregnancy tests allow women to find out they are pregnant almost immediately after an absent period.  With ultrasound scans available to prospective mothers as early as 6 weeks’ gestation, it is now common to see the growing foetus in utero.  These tangible factors allow prospective parents to see their baby; to formulate future dreams of what they will look like, what they will be like and what their lives may encompass, from a very early gestational age.  These medical advances, along with the internet (particularly social media), has changed the narrative in Western cultures almost entirely.

From an occurrence that was historically perceived to be the loss of a ‘bunch of cells’ and the common platitude of “you can always try again”, it is now common to post ultrasound scans on social media pages with the ensuing proclamations and public announcements of parenthood. Following a miscarriage, some of these women are now posting photos of their miscarried foetus’ as evidence of their loss, and as such, there is a growing movement to allow miscarriages to be registered as a birth.  The internet has opened up a dialogue where these women can claim their identities as bereaved mothers.  Within their bodies and their imaginations, these children were real, they existed, and their death is impactful.  Social media has enabled them to form support groups online, particularly within Facebook, and there is impactful peer support on Twitter such as #BabyLossHour.

Clearly not all women are online, not all women grieve a miscarriage, not all women welcome the news of an unplanned pregnancy.  But there is something empowering about claiming your own narrative and having peer support available, whatever that narrative may be.

As always, this content is copyrighted and cannot be reproduced without my 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…

#Life.WhatTheF#ckIsThis.Death

I was delighted to be invited to join the ‘cast’ of #lifedeathwhatever this week at Sutton House in Hackney to talk about my passion: grief following a bereavement.  I was excited for predominantly two reasons; 1. because ordinarily no-one wants to hear me bang on about theories and debunking the myths that still abound about grief, and 2. I wanted to explore the beautifully curated creative exploration of life and death that beckoned.

Sutton House is a National Trust property that is beautifully preserved, and the curators @anna_eol_doula and @poetic_endings have done an outstanding job of adding beautiful installations to it.  One example was a coffin playroom which consisted of coffins full of multi coloured balls for tactile exploration.  There was also an ‘all that’s left unsaid’ exhibition of cards with sentiments written on them such as ‘you said you loved me, you lied’ and ‘you should have knocked and asked to come in’.  This was also an opportunity to examine a pink hearse, drink death themed cocktails and eat a herb supper.

But enough of the interesting exhibition -never one to miss an opportunity, I’d like to share a brief overview of the content of my workshop with you.

The first part of the presentation was exploring the differences between intuitive and instrumental grievers (Martin & Doka, 2010) with specific personality types.  Whilst these are generalities, exploring the combination of variables gives rise to explaining why different people exhibit grief in different ways.  I’ve written about this at length in my book Grief Demystified, due to be published by JKP in 2017.

Secondly we had a discussion around the myths of grief.  ‘Are you over it yet’, ‘time heals all wounds’, ‘you can always have more [children] and the big one: the 5 stages of grief.  For those who are unfamiliar or haven’t checked Wikipedia.com lately,  the five stages of grief were identified by Elisabeth Kubler-Ross as the grief emotions experienced by those who were dying in the 1960’s, not the bereaved.  The model was later expanded by Elisabeth to encompass grief but she was very clear that the stages are not linear and not intended to be interpreted that way.  There are several more modern models of grief that are preferable to demonstrate the reality of bereavement.

Lastly we explored the impact of social media and how our digital legacy affects grieving. The consensus was that the immediate family should have control, and power of veto over who should post, and what content should be allowed to be published publicly.

For further information on this workshop or if you would like to chat to me about running one or attending one of my training courses, please contact me at thegriefgeek@yahoo.com.  I am always delighted to share this with anyone interacting with the bereaved, to the bereaved, or anyone supporting the bereaved professionally.

In conclusion, I would highly recommend a visit to http://www.lifedeathwhatever.com when the next one is running.  The exhibitions and events are life affirming and invigorating and are perfectly situated within an atmospheric and beautifully historic venue.

 

 

 

Death and Culture in York- My Thoughts..

I just wanted to return here to document some interesting ideas and information I gleaned from the recent Death and Culture Conference at York University. The conference was an interdisciplinary event involving a wide array of perspectives across the full range of death, dying and bereavement topics, but not excluding other related areas.  Here is a summary of my highlights from a varied and fascinating three day programme:

Dr Karina Croucher presented a very interesting talk about her partnership with Christina Faull of LOROS Hospice in Leicester on their joint research, combining archaeology and continuing bonds.  An unusual combination on the surface until she explains ‘I study the mortuary practices (i.e. the ways in which people reacted to death and treated their dead) in the past’ and then you realise this joint research is completely logical and will be fascinating when completed.

Brenda Mathijssen spoke on the theme of continuing bonds.   She talked about the wearing and retention of ashes and how these items, created from the remains of our loved ones, are so significant when we are initially bereaved, but over time they lose their significance.  The continuation of bonds that are so necessary for us to grieve, ultimately become transformed bonds- which reminded me of J. William Worden’s final stage of relocating the deceased.  Interestingly she stated that there is a 30 day waiting period in The Netherlands after cremation before you can collect the ashes.  Those 30 days are designed for thinking and processing.

Dr Heather Conway raised the issue that there are currently 3.5 billion internet users worldwide, so  consideration should be given to the legal aspects concerning our digital legacy.  There are many issues to consider: what is a digital asset and what expires at death, the etiquette of virtual cemeteries, digital wills, Facebook memorials, other social media sites and legacy or deletion decisions.  She asked; are digital companies sustaining the view of an afterlife, how are the hierarchies of grief affected, what about contested narratives, what should the virtual memorial rules be etc.

Chao Fang delivered a fascinating presentation on the advent of ‘Shidu’ or the loss of an only child in China.  Due to the government policy of one child per family, the death of a child has political ramifications that perhaps don’t exist in other cultures.  Additionally, older people in China are reliant on their children as there is little social support, so the loss of their child has significant secondary loss implications, including financial implications.  There is also a ‘shame’ in not having children in China, that makes them feel that they are ‘unable to face their ancestors’ after the death of an only child, and that this is ‘the most distressing thing ever’.

There were also talks that discussed the issue of the ‘social dead’ i.e. slaves in Capetown and Barbados. I wondered about the bereaved and their ability to process meaning making after such heinous events, but the focus was on the deaths and lack of memorialisation not the living…

There were also presentations about the sensationalism of murderers and the lack of narrative surrounding the victims. I wondered if I would welcome public reminders of my loved one if they had been murdered?

Lastly a special mention & thanks to Dr Ruth Penfold-Mounce and colleagues for organising this event, it must have been a lot of work but well worth it – a fabulous time was had by all!

Do as I say and not as I do…?

Today I’m hugely conflicted.

I awake to a smart phone that flashes and beeps 24 hours a day, 7 days a week with social media notifications, and bereavement alerts of one description or another.

But today is not just another day; it’s the anniversary of my nephew’s death.  So I have notifications and reminders of this fact via Facebook, emails & texts- as if I wasn’t already acutely aware of the date.

The conflict is whether I share my memories or photos, or my feelings in such a public forum.  Do I change my profile picture? Post a photo of my nephew? Post a loving memorial telling ‘the world’ how much he’s loved and never forgotten?  Or do I keep quiet, and privately remember, and treasure our short time with him, and all the joy he brought in the three and a half years he was with us?

As a bereavement support worker, I’m an advocate for being open about death, dying and bereavement; a death denying society is not a healthy one in my opinion.  Death is a natural part of life, and grieving is necessary and healthy.  But I’m not sure I want to express my thoughts and feelings in such a public way, or to people that never knew my nephew.

Which brings me here.  To a fairly private, largely anonymous forum where I can express myself to those who ‘get it’, without the platitudes, and devoid of the ‘stalkers’ who are my friends that read but don’t comment..

This is my way & you will have your way.

So this is my tribute to a beautiful child that touched our lives in so many ways.

Always loved & never forgotten 💛

 

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.