Diversity - and respect for diversity - in grief
Updated: Sep 29, 2020
I have just watched Hannah Gadsby's TED talk, and woven throughout much of the early part of this talk is discussion of being at the bedside of a person who is close to death - useful in terms of general inclusion for death literacy understandings and for respect for the multitude of ways that we may all experience and process grief. I am personally struck by the honest consideration of diversity in grief, and it is this topic, Gentle Reader, that I am offering you for today's post. N.B.: In the TED talk it is useful to have seen Gadsby's previous show Nanette (currently streaming on Netflix), the link to the trailer is here.
On a personal note, something in this TED talk that I particularly appreciate is the reflections Ms Gadsby offers about the experience of sitting quietly in the room with her grandmother, because I don't think we can ever pay too much attention to active listening and witnessing silence at end of life.
There is much that I admire about Gadsby's work, and in comedy I especially respect and appreciate her honesty - in a field where all too many standup offerings go for stereotypes and the cheap/easy target, Gadsby holds to an intelligent and staunch line of honesty and critical consideration in her content. I appreciate being made to think, and I suspect it is good for us to be made to think at times in life when we least expect it... I don't know about you, but it helps keep me honest and out of complacency. There are a few aspects of this talk that made me think quite deeply about respect and diversity at end of life and in grief - and when I wrote them down I realised that they are weirdly and pleasingly interlinked - so in no particular order I will share them:
Gadsby openly discusses sitting in silence with her grandmother when she was dying, describing her grandmother as "cocooned within herself" This is a lovely encapsulation of what we generally see when someone is dying; active dying is work, and we don't need to be distracted by someone talking at us to make themselves feel better.
One of the most underrated and powerful gifts we can offer to the dying and to ourselves when we are around the dying is to be quiet. This concept of silence is an odd one when we consider how much noise, both verbal and visual, we are constantly bombarded with in our 21st century (primarily) urban lives. Silence allows space for the person who is at end of life to concentrate solely on the work of dying, whilst simultaneously allowing ourselves to begin to sift through and compose our memories and ideas of who and what the person we are silent with is to us. Silence is a gift, do not underestimate it's value.
Some time ago a good friend and I were both living with quite strong anticipatory grief, and we would often meet up at a cafe when our work schedules permitted, not to have a drink really, but rather to hold hands across the table while gazing into each other's eyes and crying if we needed to. We did all this in silence. My friend told me that I was the only person in her life who didn't try and 'fix' the diagnosis her husband lived with, so being able to be in silence and witness her own sorrow, anger, grief, rage, guilt, bewilderment, and confusion was beyond price. I felt, and do still feel today several years later, exactly the same way. I think we are both incredibly fortunate to have each other in our lives to be silent with when we need to.
On a general note of sensitivity, if you notice some people doing something like what my friend and I did on in public on many occasions, please refrain from interrupting and insisting on knowing what is going on. I have had this happen during professional training, as well as in my personal life. If you are not terribly comfortable with public displays of sorrow or personal interactions then feel free to walk away or turn your chair around so you are facing another direction, the persons working through their grief or sorrow do not owe you an explanation. If you have questions please email me: firstname.lastname@example.org
Being responsible for choices we make ourselves
Gadsby is open about a conscious decision made late in her grandmother's life not to come out to her grandmother in order to keep the focus on their relationship commonalities, rather than a single difference of sexual orientation.
Now that her grandmother has died Gadsby has time to reflect on whether or not remaining silent about her orientation was wise as the opportunity is now gone forever. However, I offer this perspective on whether or not every single detail about ourselves and our lives needs to be confessed to someone close to us - I think choices are probably not something we need to spend a good deal of time agonising over. If we make choices consciously and in a considered fashion, bearing in mind the context of the relationship we have with the person we may or may not say something to, then we probably made the right decision at the time. Playing the 'what if' game, as my long-time Gentle Readers are aware, is not a pastime I indulge in, nor do I recommend anyone to try and play this game for any length of time. Arguably the 'what if' game is a very human thing to play it a bit, but do try to exit as soon as you become aware that this is what you are doing - life is too short, and time goes in only one direction.
Gadsby is also honest in her talk, setting a positive example of how to act when we may question a choice of non-disclosure when someone is at end of life: Ms Gadsby sat in silence with her grandmother and thought about all the things they had in common. If you have withheld a secret or a fact from someone for any length of time, I urge you to follow Gadsby's example and not say anything. Speaking up at the final moments of someone else's life serves to make yourself feel better in that moment, but you are doing a disservice to the person who is doing the work of dying - effectively you are demanding that they stop focusing on themselves, and pay attention to you! Right now! Try not to be selfish, and don't worry about whether or not you are "doing the right thing" by maintaining a disclosure boundary. If it was the right decision to be quiet at all the other times in life that you had to tell this person that thing (and we presume that it was, see previous paragraph) then it is the right decision to be accountable and responsible for that choice, and to allow space for the dying person to die.
(If you really are haunted by whether or not you did right to remain silent, I advocate tapping it out and/or talking with a trained professional who specialises in grief. I am one such person, however I am happy to help you find someone too. Get in touch and we will work out the best solution for you.)
It may seem as though this point belongs with the first, however silence can be active and full of presence, or it can be rote and disinterested - hence the focus here in this section on why being present is so important.
Gadsby speaks openly of sitting with her grandmother and actively thinking of their relationship, and their time together in life as her grandmother was actively dying. At no point did a mobile phone figure in this scenario. I promise you that your phone, and ALL your social media accounts will still be there waiting for your when you leave the room, and after the person you are with has died. Leave your phone out of sight and away from your eyes and face when you are sitting with the dying, I cannot emphasise this point strongly enough.
I read an early review of Gadsby's first show of her new tour by the ABC today, and like the no-phones approach that several artists are taking to their events. For example, Gadsby's touring schedule now includes a phone pouch that will hold your phone in flight mode or on full silence, permitting an audience member to still 'have' their phone with them, but to not give their attention to their phone during a show or performance. Death, in a sense, is a final 'performance', and the end of life - especially and particularly the active dying phase of the final hours and few days of someone's life - is a special kind of dress rehearsal for death. Just because someone is dying at home and you may have your phone with you (unlike a hospital where you do need to turn phones off around certain types of equipment), does not automatically mean you must have your phone with you and turned on.
Pay attention! The person you are sitting with merits and deserves your full attention - in silence, or near to it - this also extends to not touching someone actively. Place a quiet hand, but don't stroke or rub, this is another way to demand attention that the dying person requires for the work of dying. Death is rather like birth in a sense, in that each of our births and each of our deaths is unique to us as individual people. I write 'pay attention' in shouty font here because if we are giving all of our attention to our screens and not to the person's death, then we impoverish and diminish both our reason for being there, and the life of the person we are with. Choose enrichment and meaningful connection. Be present when someone is dying, even if you are uncomfortable with the finality of it all...after all, this death is not about you. The dying person does not need food, presents, entertaining, or diversion, but you can honour their life and death by simply being present. Try it, you will get more from this than you may realise.
Contextualising ourselves in our grief and our millieu
Gadsby emphasises her love and connection to her grandmother repeatedly in her talk, noting that some of her time spent with her dying grandmother, as well as time after her grandmother's death, was dedicated to fully exploring the connections and links that bound her grandmother to her. This is a lovely and loving way to think about someone, as well as a healthy way to begin the process of raw grief. The teacup image her is a small homage to Gadsby's favourite sound - see "Nanette" for full clarification.
Taking a bit of time to contextualise the person who is at end of life in terms of our own networks, family, and community can be helpful for our grief processes at a number of levels. Sitting in a reflective manner and focusing on a specific aspect of our lives - viz. our relationship with the person at end of life - is a style of mindfulness that can help to calm stress and agitation/denial associated with death denial. Contextualising can also help us to reinforce the good or more positive aspects of our relationship and memories, helping the brain to etch the pathways to these memories a bit deeper for easier access later on; this can be especially helpful when moving on from the fresh, raw grief of recent death and into the 'after' stages of grief and life.
A focus on connection also helps us to remember, as Gadsby herself discusses, our place within a wider network, or networks, of persons and animals all linked to the person at end of life. Connection can be helpful when we are tempted to slump into despair at how awful OUR personal loss is (grief is the personal experience of loss in death), and may serve to prod us gently over the way towards the understanding that arguably many people may be touched by the death of a person. Many people mourning together with us may help us to remain connected and not slump so much that we lose touch with our lived routines and realities for extended periods of time (mourning is the shared experience of loss in death). Connection is our friend, so nurture and foster all healthy connections in your life.
Um, OK, yes, fine - BUT WHERE IS THE DIVERSITY??!
Well, I did actually promise diversity, you are right. It is in the title...
Gadsby is open about her non-conforming appearance in terms of gender, in combination with the fact that she is a lesbian, and also on the autism spectrum. Note that none of these very diverse aspects of identity and personality impact or diminish in any way Gadsby's experience of loss, death, grief, and life processes.
I hope that the point of diversity that I want to make with this post by not concentrating on diversity until the end, is that diversity is one of the fundamental inevitables of life - we are all different, and in our diversity is strength. What we may need to take a moment about when we are with the dying and the grieving is to remember that just as our births and deaths are unique to us, so are our responses to end of life, dying, and death. Practice as much kindness with others as you do with yourself - or if you need to flip that around so you are practicing as much healthy self-care as possible, be as kind to yourself as possible. Then be that way with others around you. Do NOT expect that everyone will go into paroxysms of sobbing, or to be completely stoic, or to speed-talk through a funeral just because that is the way you do things. Try not to be too judgy, and strive to bear in mind that while everyone is probably feeling touchy, edgy, raw, and emotional, we have our own individual ways of manifesting what we are feeling and processing what we are feeling. Take a deep breath - or three - before responding harshly to someone who may be rubbing you the wrong way, and step outside for some fresh air if you need a break from someone or a particular situation. Time outs are OK, and do not make us bad or unloving people - harsh and unthinking, derogatory responses may though, so feel free to re-read this section in regard to deep breaths, taking a moment, and stepping away if you feel overwhelm.
Be kind to those who are 'different' to you - whether in life, personality, or response to death and dying - you may learn something wonderful about coping mechanisms, or you may simply not enact a scene at someone's deathbed. Either way, I'm give you permission to call it a win, and just think of all the soothing apologies you've just saved yourself from having to make because you didn't offer a knee-jerk unkind response to someone else's way of grieving. Think of the social media comments you can save yourself from, too...
Give space to others, give space to yourself - with enough room we have room for all the diversities and responses to grief and death. This is a very good thing.
Are you wondering about how to build up a coping skill-set for end of life and death for yourself and/or your family or community network? Please do not hesitate to get in touch - I am an End Of Life Consultant and end of life doula who specialises in education, listening, and information transfer. I also run workshops, offer gift certificates, and a safe, inclusive space for LBGTIQA+ people and allies to acknowledge and talk about grief - all with style, understanding, and humour.
You can email me at email@example.com if you have questions or would like an appointment.