St Lukes Hospice Talk – by Simone

I had the privilege of being asked to talk to the grief counselors at St Lukes Hospice on Saturday to give them some insights into our grief journey and things we feel may help others. Here are the notes I went armed with, most of which I didn’t use, but I thought they would be interesting to share here.

Welcome and thank you – for giving so selflessly. And wanting and being able to do what so many people are incapable of doing. Grief is such a taboo subject and makes so many people feel so unbelievably uncomfortable. Thank you for embracing it and wanting to help people through it! I also have no doubt that you have all experienced your own personal grief and have been able to draw on these experiences.

 

Why am I here. What qualifies me to talk about grief. My story.

 

Why we stared the blog.

Just after our precious Belsie died, James came home and told me he had started a blog. I had a freak out – how could he be making our tragedy so public? However, what I’ve come to realise is that our blog has become one of the most powerful tools in both the processing of our own grief, as well as helping others know how to deal with us. What has also become extremely powerful is how our blog is being used to help others who have experienced loss, specifically that of a child. If we can use our blog to help others and to empower those close to them to support them better, then somehow our children’s loss doesn’t seem so in vain. It also allows their lives and names to live on beyond their time on this earth. We have tried to give both insights, as well as practical tools that help.

 

Support

Both James and I have been so privileged to have been supported incredibly in so many different ways by our family, friends and community. And this is largely why I have been able to share on this subject, because we have been blessed in the best way and really know what it means to be carried and protected by others.

 

Encourages questions as I go. Please stop me. want to be as interactive as possible so we really talk about the things you battle with and how I can help you interact and engage better.

 

Loss, it’s all around us all the time. Nobody is unaffected by loss, and everybody’s response to loss is different. Some deaths are sad but expected, others heart wrenching, and some completely knock the air out of you. But what I have found is that there are certainly a number of commonalities around what people need and want when they are grieving as well as how inept people feel when wanting to helping the grieving. I am hoping I will be able to give some insight into that today.

 

ADVICE TO GIVE TO THOSE TRYING TO HELP

These are a few things I found really helped us and I think should be remembered. And I really believe that the more we can impart this information on to people who are trying to help the grieving the more helpful we can be.

 

  • Acknowledge: When you see someone who you know has experienced a loss, even if you don’t know them well, always acknowledge it! More often than not it will be so appreciated. Remember, you aren’t “reminding” them of their loss by mentioning it. It’s with them all the time, pretty much every second. Give eg here. And so by you acknowledging it, it’s making the other person feel okay, their feelings allowed and validated, like they can be real and authentic with you, and for most it will feel like a huge relief.
  • What to say: I am so often told “but I don’t know what to say”. Not knowing what to say is okay! In fact, there is no right thing to say, saying nothing is the only wrong thing to say. “I am sorry” perfectly suffices! You don’t have to find something profound to say, just those 3 simple words are perfect.
  • Don’t try to “fix” the situation or the person. Sadly, our culture has treated grief as a problem to be solved, an illness to be healed, or both. In the process, we’ve done everything we can to avoid, ignore, or transform grief. As a result, when you’re faced with tragedy you usually find that you’re no longer surrounded by people, you’re surrounded by platitudes.
  • When a person is devastated by grief, the last thing they need is advice. Their world has been shattered. This means that the act of inviting someone into their world is an act of great risk. To try and fix or rationalize or wash away their pain only deepens their terror. Instead, the most powerful thing you can do is acknowledge. Literally say the words: I acknowledge your pain. I am here with you.
  • Don’t ask what you can do to help, take the initiative and just do it. Mostly it will absolutely be the right thing and will be so very appreciated! For us it was meals arriving and us being fed, grocery shopping done etc. My anxiety around going shopping.
  • Say our loved ones name often, over and over again. While it may make you feel uncomfortable it will be so much appreciated. Any opportunity is so welcome!
  • Our loss will change us forever. Be patient with us and understand that. Don’t expect your “old” friend to emerge again after the socially allowed 2 weeks of grief. It’s very rarely going to happen that way, especially in the loss of a child. A loss that is not within the “normal” course of life will change you forever. I will grieve for a lifetime. There is no “moving on” or “getting over it”. There is no fix. The loss of a child is not one finite event. It’s the continuous loss that unfolds minute by minute over the course of a lifetime – it’s every missed moment.
  • Anniversaries: Know that there are at least 2 days a year we need a time out – your loved ones birthday and the day they died. And the days leading up to these 2 days can often feel like impending doom, like its impossible to breath. Sometimes worse than the actual day itself. Be particularly gentle around these times.
  • Social situations that you can’t control or predict can often be extremely challenging. You don’t know if people know, how they will react, how you should react. It’s easier if you have “your team” of people around you who can shield and protect you but sometimes that isn’t the case. Be sensitive to this when including somebody who has experienced a loss into a group event of any sort. Perhaps give the other people who might not know what happened a heads up so that difficult questions can be avoided (eg. how many children do you have? How old is your child now, last time I saw you you were pregnant?). And understand that there may be many invitations that they may turn down, pull out of at the last minute, or leave early from. Be patient, kind and understanding.
  • And ensure that you are consistent in your support. And I know that this can be really really hard. Because while for those who are not directly impacted, you grieve and then get on with your life. You don’t mean to forget, but you do. Be there, not just when it happens, not in the weeks after, but in the months and years to follow. The grief gets worse in the months after the event, once the shock has worn off and the terrible reality starts to set in. Once everybody moves on and you are still stuck in your dark, deep hole. That’s when a grieving person really needs you. If you contact someone asking to meet for coffee, offering to bring a meal or pop in – do it!! If you feel unable to follow through on this, rather don’t offer!
  • Depression: Most people who experience grief will probably feel some sort of depression and/or anxiety. For some people this may be relatively short lived and for others this may be very protracted. Understand that in this time, this depression can really fundamentally change your brain. You will not retain anything, you will have pretty much zero recall, and unless things are written down they absolutely won’t happen! You will feel like you are standing above yourself, looking down on your life, existing but not partaking in any way. You will feel like you are going crazy, and sometimes, maybe you are, but for most this cognitive gap will get better. But it’s real, very very real. If it’s you, try and be patient with yourself, and if you are watching somebody experience this, have zero expectation of them.
  • Grief Club: Sometimes the only people that you will find comfort in are those who have experienced a similar loss. And the scary thing is that there are many more people than you think that are part of this “club” that no parent wants to be part of. Bereaved parents share an unspeakable bond and there really are some shining stars in this club who just “get it”. Who you can say things to that you could never say to anybody else. Because until you have said goodbye to your child, held them in your arms knowing it will be the last time, you will never know the extent of this grief.
  • Don’t ever tell a mother that her child is in a “better place”. Because while we know you mean it in the best way possible, no mother will ever believe that any place other than right there with her could possibly be better. Also, never say everything happens for a reason.
  • Make your interaction personal and specific: For us it’s been pictures on friend’s fridges and knowing that their bench and resting place has been visited – that someone took the time and trouble to go and remember them. We love to know that!

 

What helped me most:

  • Writing, therapy and anti-depressants

 

THERAPY

Encourage therapy as much a you can. For some reason there is still a massive stigma around therapy and there is the belief that people need to be suffering a debilitating mental illness or going through an interpersonal issue before getting this sort of help. In almost every other aspect of our lives, we embrace upskilling ourselves, learning more, to make us better at the things we do. We do additional courses, read extensively, and are generally proactive about learning how to do new things and getting help. There are very few areas where we are just expected to know how to do something. Want to learn to speak French? Go on a course. Want to learn to surf? Get a few lessons. And yet for some reason, when it comes to ourselves and our emotional needs and feelings we tend to be incredibly slow and reticent about equipping ourselves at doing a better job at coping with our emotions. If we have a cough or flu or arent well physically we go to a doctor, seek some help and get better. Why should battling emotionally be any different? A psychologist is objective and can be honest with you without being scared of offending you. They help you to process things that would otherwise often be too difficult to think about. Not only do you talk through issues but you develop invaluable skills to help you deal with things in your life going forward.

 

Most people who experience grief will probably feel some sort of depression and/or anxiety. This depression can really fundamentally change your brain. One of the most powerful tools that I found to help me deal with my grief has been the relationship that I have built with my psychologist.  When I first started seeing her, I felt like I was standing above myself, looking down on my life, existing but not partaking in any way. I felt like I was going crazy! We really just focused on the practical aspects of getting me through each hour and day without feeling like I was going to implode. As time passed and I started to find some strength to cope with everyday life, with her help I was able to work on processing the bigger things that I had to think about – what to do with Bella and Thomas ashes, Bella’s belongings and bedroom, my husband and I grieving differently, how to help our grieving child. I would not be in the place where I am today had I not chosen to make this investment in myself. And I really do hope that everybody has this opportunity.

 

RESILIENCE

Resilience – it’s a subject I have spent so much time thinking about and reading about. What makes some people more resilient than others? Is it life experience that shapes resilience? Or is it your approach to life that drives resilience? What makes some people able to pick themselves up and carry on whereas others can fall into a deep depression without being able see the wood from the trees, any light at all? Is it about being a glass half full vs a glass half empty person?

 

We all learn something about ourselves in difficult times. Through these times, certain people manage to maintain their emotional balance. Instead of slipping into despair, they remain optimistic and focused enough to generally keep going with their lives. This ability to bounce back from disaster is “resilience”. What interests me about resilience is, is it something that develops because of challenges or is it something that already pre-exists as a personality trait? I still don’t know the answer to that question, and I don’t think its one or the other. Sheryl Sandberg talks about resilience being like a muscle.

 

One of the things that has proven to help resilience is taking time to count one’s blessings, rather than dwelling on what you have lost or what you don’t have. Take time every day to count these blessings – write them down.

 

Option B – Sheryl Sandberg

A very personal account of her experiences from losing her husband, but also an excellent grief handbook. It gives really useful tools in terms of how to deal with grief on every level – personally, with your kids, from a work perspective and how to enable and help those that are grieving. What she highlights so well, is that while losing a husband/child/loved one is one of the worst things that will ever happen to you, it is not the end of your life. You can get through this, being stronger and more resilient for it, and you can find joy again!

After the death of her husband Sheryl Sandberg spoke about her own resilience and said it came from the “three P’s,”: personalization, pervasiveness, and permanence. Personalization is the lesson that not everything that happens to us happens because of us. Pervasiveness is the belief that an event will affect all areas of your life. The lesson is that there are other things in life that are not awful and these are the things you need to hold on to. Permanence is the belief that the sorrow will last forever. But it isn’t true. Accept your feelings, but know they won’t last forever (or at least their depth wont).

 

What is resilience to me? 

  • To me resilience is knowing that my heart will never heal, that I will be forever fundamentally changed. But while knowing that I still get up every morning, ready to face the day, wading through the sometimes crushing grief, hugging my darling son a little tighter and breathing him in more sweetly, because he gets to take the breaths that my other children have been denied of.
  • Resilience is knowing that while I didn’t get to hold my children for long enough, I will forever hold them in my heart. Their presence as real and as significant as those that live on this earth.
  • Resilience is knowing that while love never goes away, sometimes people that you love do. And you need to learn to be able to feel this love without it destroying you.
  • Resilience is living when you would rather completely give up.
  • Resilience is knowing that there are no victims. Life is a choice. You need to make that choice to wake up every day and live the best version of your life. Bad things happen to everybody. It’s what you decide to do in the aftermath that really reveals who you are – to yourself and to others.
  • Resilience is knowing that because of what I have experienced I have a greater depth of love, compassion and understanding for others than what I would otherwise have. That when I say “I know how you feel” I can really and truly sympathise. And that I can be really helpful to those earlier on in this journey than me.

 

WHAT I WISH I COULD SAY (with perspective)

When I hear of somebody who has lost a loved one, my heart aches for them. I want to wrap them in cotton wool and protect them from everyone and everything. But I know that I can’t do this. But these are the things I want to say to the,:

  • I want them to know that you will never get over this, ever, but in time, you will learn to live with this grief, without feeling like its eating you alive.
  • You will be able to laugh and sing again, and feel some joy without feeling guilty. It will be hard, so so tough, and your view on the world will be completely different, joy will take on a whole different meaning, but you will feel it again.
  • Don’t lose hope. Because sometimes you just feel so utterly hopeless. You want to crawl up in a ball, hide from everything, and never wake up. But slowly the light of hope will start to shine again, at first creeping through every now and then, and then slowly becoming a more frequent visitor as time passes.
  • Please please please don’t be scared to ask for help! Whether in the form of therapy, medication, time away, meals, grocery shopping, whatever it is. Remember that people really want to be made to feel useful and helpful. Accept the offers of help.
  • People will tell you that it will get easier. It doesn’t really. But its gets different, softer perhaps. You will obsess less. You will learn to find some kind of acceptance. The nightmare that you feel you are living becomes less vivid. But its always there. Always. It’s a lifelong sentence. But you won’t remain doubled over in pain forever.
  • On some days you will be feeling okay, like you might be starting to deal with this a little. That the happiness to devastation ratio isn’t always at 0:100 anymore. And then something happens that takes you back to that dark dark place. But what does become easier, is that you don’t stay down there for that long. Your ability to duck under the wave instead of being dunked by it, does become a little better.
  • You will find ways to honour your child every day, in little ways that make sense to you. People often won’t understand the things that you do, why you are how you are, and that’s okay. The ones that really mean something, will always be there.
  • You will treasure the precious things in your life even more. You will appreciate things that you took for granted before. Life will take on a different view completely.
  • When everybody has moved on, has gotten busy with their own lives again, you are not alone! You have become part of this awful club that no parent ever, ever wants to join. But we are there for you, holding out a hand to you, carrying you when you need to be carried.

 

So just breath, one breath at a time, one moment at a time. You are stronger than you think, you will not drown. You need to make the choice to wake up every morning and to face the day. You have the privilege of life that your little boy was robbed of, and you need to make him oh so very proud of you. You get to decide what your life is going to look like going forward. Make this a life worth living, if for nobody else but the person you have lost.

 

When you’re face-to-face with an undeniable sorrow that you can neither alter nor reverse, you’re given a unique opportunity to learn what many are (fortunately) spared. You learn about yourself, the people around you, the potential of the future, and your undeniable strength; all beneficial as you move forward with your life, an altered life, but life nonetheless. Grief gives you a resilience you didn’t know you had. I think more often than not people are surprised by their own resilience, what they can withstand, the fact that life actually can carry on and you can find joy again. This feeling can often make you feel guilty as well. That if you enjoy yourself, sing along to a song in the car, enjoy dinner out, just feel lighter, that you are forgetting your loved one, that you are moving on. And one needs to keep on reminding yourself that this is not the case at all. That being able to live again, in an altered reality, doesn’t mean that you have forgotten the person, or love them any less. It just means that you know that life is worth living, that the person who has left our earth wouldn’t want you not to carry on. That they would want you to live your best life, if for no other reason than in honour of them and the life they didn’t get to live.

 

To the person grieving: You won’t think it possible now but you will get through this. Somehow you will have the strength to crawl along this dark tunnel, which seems to never end. There will always be a darkness inside you and around you, but as time goes on you will start to see and experience a little more light. You will be a different person, forever changed by this event. You will never “get over this” but you will learn to live with it. People will tell you that it will get easier. It doesn’t really. But its gets different, softer perhaps. You will learn to find some kind of acceptance. The nightmare that you feel you are living becomes less vivid. And while it’s always there, a lifelong sentence, you won’t remain doubled over in pain forever.

 

To the person comforting a grieving friend: It is ok if you don’t know what to say. You don’t have to try and “fix” them. Although your words can’t make their heartache better, your presence and stillness can help ease their loneliness.  Just show up. Listen a lot and say little. Understand that your loved one will be forever changed. Nurture them, love them, feed them, envelop them in kindness and patience. Remember that for them every day is a struggle and the best thing you can do is to be there.

 

WAVES

“I wish I could say you just get used to people dying. I never did. I don’t want to. It tears a hole in me whenever someone I love dies, no matter the circumstances. But I don’t want it to “not matter” I don’t want it to be something that just passes. My scars are a testament to the love and relationship that I had for and with that person. And if the scar is deep, so was the love. So be it.

As for grief, it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while all you can do is float. Stay alive.

In the beginning the waves are 100 feet tall and crash over you without mercy. They come ten seconds apart and don’t ever give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find that the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But, in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything – and the waves come crashing. But In between waves there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall.  Or 50 feet tall.   And while they still come, they come further apart. You can see them coming. An anniversary, a birthday,  Christmas, a family gathering,  another birth.  You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, spluttering, still hanging on to some tiny piece of the wreckage, but you’ll come out.

Take it from an old friend. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too.

If you’re lucky, you’ll have lots of scars from lots of loves. And  lots of shipwrecks. Scar tissue is stronger than the original flesh. Scars are a testament to life. They are a testament that you can love deeply and be cut, and gouged and continue to live.”

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