Make Space for Grief:
Honour the place you are in.
Saturday April 7, 2018
Linda Conyard MGestT explores the grief that can arise from retinoblastoma diagnosis, treatment, eye removal surgery, loss of innocence, and mutilated family life. She considers the potential harm of suppressing this grief, and offers both families/survivors and medical professionals ways to prevent prolonged suffering.
Trigger warning: The information contained in this article may trigger your own trauma response or grief. I want to be honest and open while being aware that you are most likely walking the same path I did. If you are triggered and need support, please use what you currently have available to you. Or you can contact me via my email. If you are not ready to be fully with the rawness of grief right now, that’s totally fine. Maybe this article will be for you down the track. Maybe it will never be for you.
The Culture of Grief
Grief is a natural and unavoidable emotion that is part of this human experience. The trouble is that because it is so uncomfortable and painful, we try to avoid it at all costs. Wouldn’t you agree? I know that was true for me. The actual cost of not grieving is our mental, emotional and physical wellbeing.
I’m sure you have noticed western culture allows external displays of grief only at the “appropriate” times, such as a funeral or at the time of a diagnosis and treatment. There is a silent societal norm that the grieving period doesn’t go for too long.
For example, there are guidelines for how much leave you can take for bereavement, and our relationship with the individual must meet the rules before we get our leave. So for some of us the loss of an animal may bring very deep grief but that is not acknowledged. My experience in the medical model was that grief and stress was not acknowledged positively.
The Burden of Judgement
One hospital stay with my daughter, she was only a baby, highlights this. I was doing all her care except for anything medical which wasn’t too much. I read the notes in her chart at the end of her bed. I noticed a comment in there by a nurse saying “Mother not coping”. I was angry, astounded and couldn’t believe what I was reading. I don’t recall anyone speaking to me. I hardly saw any of the staff because I was doing all the care day and night. How did they come to that conclusion? Did I challenge it?….No. Why? Because I would be seen to be not coping even more! What did I do? I internalised what was not allowed.
We have to deal with the fact that our children have cancer and have operations that amputate their eyes, or any of the myriad of treatments prescribed. We may have more than this one child so we are juggling being away from home and trying to maintain some kind of normal life in this absolutely abnormal environment. But we also have to mind our Ps and Qs so we appear to be coping! Where is the benchmark for coping? Who set that? It’s apparently a secret and there are invisible judges ready to give us a score at any given moment without even engaging with us. How does that happen?
Where is there space for our grief? Where is the space for our valid stress? Should we really have to ask for that space or be judged by how we react? I wonder how people are supposed to present when they are faced with an enucleation.
Embracing and Honouring Grief
While contemplating what I wanted to share in this article, I made a decision not to be fluffy or upbeat or clinical about grief. I made the decision to get absolutely real and authentic about the experience.
I often feel that in groups or writings that I read, the truth is often skipped over. I’ve noticed in some support type groups that someone will say they are having a terrible day and then follows the avalanche of comments such as – “keep fighting”, “you are brave”, “you can beat this” – you get what I mean! Yet another place where there is no space for feeling absolutely terrible.
Grief is not pretty and it doesn’t feel great. Maybe people just need to be met and held in that horrible, painful place instead of being forced out of it and into silence. One of the biggest gifts you can give anyone who is grieving is to just be with them. Nothing to fix, nothing to change. Just acknowledging their need to be held and witnessed in that place of deep pain. When I say held, that doesn’t necessarily mean physically being held. It’s more about holding space for someone to be exactly where they need to be.
I believe the encouraging comments people share in response (“keep fighting” etc.) are a form of protection. The responder feels they are helping, without having to step into that vulnerable place of pain – not knowing what to say, afraid of saying the wrong thing, or unable to acknowledge their own grief.
Our Retinoblastoma journey is indescribable. If you really touch into that place of grief and loss within, you can physically feel it. Even for me 30 years down the track as I write this, I can still feel that raw and very vulnerable place within me. That kind of loss never goes away, your life builds around it. I have the image of a dark circle in my mind, and each day since the trauma, a petal is added to the circle – it keeps growing to create the flower of my experience of loss.
Grief is a Personal Journey
There is no right or wrong with grief, it is very personal. It also depends on how grief was expressed (or not) in your family of origin. The words around grief in my family were to not cry and be strong! What were the words in your family? What do you hear yourself say when your children are sad?
I would often wish I was part of those cultures where wailing and crying in public is supported. Instead of our western way of smothering grief because others often don’t know how to be with it. Especially if it is long term grief – the kind that pertains to parents of children with retinoblastoma, those of us whose children wear prosthetic eyes, or whose children did not survive eye cancer.
The subconscious deadline for grief is very clear for those of us who experience long term grief. I’m sure you know what I mean. It’s that growing feeling of guilt about the conversation always coming back to our traumatic experience and the grief we carry.
We are always sensing if it’s ok or not to speak about it. You might notice some parents starting to avoid you. You may even find it is difficult now to be with some of those meaningless conversations people have. More and more we internalise our grief and isolate.
Resisting Grief Prolongs the Pain
I didn’t realize for a long time that during my retinoblastoma journey with my daughter, I fought against grief every day. Every time I looked into her face, my subconscious associated with the trauma. I could see the damage to the bones at her temples from the radiotherapy, I could see the prosthetic eyes staring back at me blankly and I could feel the disconnection within myself.
Since doing my own trauma recovery, I have come to understand that I was shut down, numb and unable to get in touch with the deep grief and trauma trapped within my body. To the outside world, I appeared to be happy, chatty and doing fine. This became my way of protecting my very vulnerable self. It was at least 10 years after my daughter’s diagnosis that the experience truly hit me. I was shocked and didn’t really understand why now? Years pass before we are free of the constant check-ups and worry about the cancer coming back.
This internalised grief also resurfaced after the loss of one of my dogs. It sent me into the deepest grief, the kind where you just find it so hard to get out of bed. This is complex grief, what happens when grief is continuous, left unattended and stuffed deep inside.
Tips for Families & Survivors
Grief does not need to be an isolating agony. Nor does it have to cling to you for years beyond the experience of retinoblastoma. Here are three ways you can avoid complex grief or trauma:
- Give yourself permission to grieve however you need to
- Name it
- Seek support
Give yourself permission
We are all allowed to grieve however we need to, and for as long as we need. Give yourself permission to do your grieving in your own way. Allow life to move past you while you are stopped by your grief. Allow your grief to come in the waves it needs to. Allow yourself to not grieve because you are busy surviving at the moment. This is not about avoiding grief, this is about bringing the truth into your consciousness and making a choice to not grieve right now.
I have learned that when you name something, it loses its power over you. Similar to giving yourself permission. My invitation is to name where you are with your grief. If it’s too hard to look at that’s fine – bring that into your conscious field. If you are in the thick of your grief, name that for yourself. Let yourself know that it won’t last forever. Giving permission and naming it go hand in hand, one movement.
We often feel as though we should be able to deal with grief ourselves without burdening others. But we are not meant to be on our own – we are hard wired for community and we have a need to fit into that community. It’s a basic survival mechanism. Seek out support, whether that be professional or a friend.
If you seek out a friend, it might be helpful to ask if they are willing to hold space for you and your grief. Let them know what your need is, and see if they are happy to support or not. It may not be something they feel able to do, and it is important that we honour their capacity as well as our own need.
Remember that support groups are great, but they are full of other people who are suffering. Certainly you will find a level of support in them.
A professional may provide a safer place to be vulnerable. I know from experience that trauma recovery is not something we can do alone or I would have done it. We are too close to the experience and emotion to see our habitual patterns. Find someone who is well trained in trauma recovery. Test them out and ask them questions about their own experience of trauma recovery.
You have the wisdom to make the decision for yourself. If you find that the friends and support groups are not giving you what you need, try something else.
May your grief grow into a flower.
Tips for Professionals
I can count on one hand my positive medical experiences during the years of my daughter’s treatment and check-ups. These experiences are so precious to me and are etched in my heart and memory. All the others formed part of my trauma. So I offer you these tips as a parent who was traumatised by professionals in the system you are part of, and as a professional who works with people to recover from trauma.
I am open to conversation with any medical professional who wants to know more. I am also open to providing professional development to any medical professional who feels they need this information.
Follow three tips to avoid adding to the trauma, stress and grief of your patients:
- Engage in Professional Development
- Be clear about who your patient is
- Be Present
Engage in Professional Development
Trauma informed care is essential across all systems – health, education, legal and government. You are working with trauma day in and day out. To support yourself in your work and to feel confident in recognising trauma, I recommend educating yourself about trauma. I guarantee it will make your life so much easier. You may even find that vicarious trauma is affecting your own health and wellbeing. I have created a short tutorial for professionals on Trauma Informed Practice & Care. Please contact my via my website for more information about this.
Be clear about who your patient is
Your patient is not only the eye that has cancer, it is the child with the eye, the siblings of the child with cancer, the parents of those children. This doesn’t mean you are responsible for all of these people. It means you hold in your awareness that everything you do with the eye ripples out to affect the whole family, as I have described above.
There is quite a lot of literature about presence. The art of being present is the biggest gift I have received from palliative care volunteering. I’ve been in this field since 2007. There are so many blessings in working and being with the dying. I have learnt how to simply be with someone, without having to do anything. I’ve learnt that by allowing people their own experience, they feel validated, and this gives them opportunity to do healing that otherwise may not be available to them. The reality is that dying can be part of your work, so being prepared for this within yourself will support those you encounter who have to live this experience.
Presence is beneficial to all patients. It allows them to relax and be truly where they are, without the risk of being judged. Presence gives space for people to connect deeply with their own being and experience. Bring this into your daily work, into every interaction with your patients and their family. This skill will support your own health and wellbeing as well as that of your patient families. It may be helpful to read my blog on Presence.
Thank you for what you do in a system that doesn’t really support you. I know your work is difficult and I know you often suffer in silence as well.
Thankfully the anger I had for many years has subsided with my recovery work, and now I feel able to connect with the struggles you experience. My heart desires now to educate as many professionals as will listen to me.