Hospice Annual talk – Simone

by Recover the gift

 

I had the privilege of speaking at the annual Hospice events in Grahamstown and Kenton this weekend. It was completely daunting but also great to be able to connect with people and hopefully make a difference in some way. Below is a clip of the slideshow I put together that goes with the talk as well as the talk itself in video form with the text below.

 

It is both an extreme privilege and an incredibly daunting task to stand up here and talk to you today. I look out and see so many faces that I recognise, many people who knew me in my earliest days, who watched me grow up and took such an interest in me and my siblings. Somehow talking to a group of people you don’t know is always much easier than sharing with those that know you. You are forced to be much more vulnerable and real, to reveal more of yourself than you otherwise might, so thank you for holding me and allowing me to share my vulnerability with you.

 

Grief is such a taboo subject and makes so many people feel unbelievably uncomfortable in talking about it, dealing with it and in facing it head on. I know that there are a number of people in this room who have faced their own extreme grief, who have lost partners, children, loved ones and who have been forever changed because of this. I hope that I can share a little today of my own experience with grief, what I have learned and what I wish other people knew about grief.

 

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

 

From what I can remember I had an idyllic life until the age of 8. And then one Wednesday evening my until then completely sheltered life changed forever. My mom Lindy, who some of you in this room knew, died from complications post a car accident leaving me, Matt (6) and Sam (3) and my dad Murray. I am not going to speak about this experience specifically right now, suffice to say that I truly believe that it was the loss of my mom at such an early age that has equipped me to be able to face the rest of the challenges in my life as I have. My dad married Debbie and at the age of 23 she took on the mammoth task of parenting 3 little children who were biologically not her own. When I was 18 years old they got divorced. This was also not an easy time for me at all, as the family unit that I had known for 9 years was no longer, and I went through a period of grief around this too. Debbie and Di (her mom) are both here today and I will forever remain grateful for the role they played in my formative years.

 

I was diagnosed with cancer for the first time when I was 23 years old, and I got off relatively lightly first time around, but the at the age of 29 it came back a lot more aggressively, this time in my lymph glands. I had a few operations, radiation and life went back to being “normal” again, besides the beginning of my struggle with lymphedema. I was also told that because of the area they had had to radiate, I would potentially be infertile. At the time, I was so focused on beating the cancer, that I never really paid too much attention to this. I then met my darling husband James, we got married, and we were informed after medical tests that I would never be able to have a child of my own because I was not producing any eggs. I remember being very upset at the time, but James, in his forever positive way, told me not to worry too much about it, as you never know what might happen. And lo and behold, 3 months later I was pregnant! Our darling son Murray was born on the 7 October 2013. I truly believed that he was our miracle baby and that we wouldn’t be able to have any more children, and then when Murray was 7 months old, I fell pregnant with darling Bella. She was born on the 1 February 2015 and I felt like the luckiest person in the world. An amazing husband and 2 precious children. Our pigeon pair. We couldn’t ask for more. I remember thinking how blessed I was, that despite what we had been told, our dream of having children had been relatively easily fulfilled.

 

And then it all changed. At about 2pm on the 15 September our darling Belsie, at 7.5 months, died when she asphyxiated in her cot. Our life was changed in an instant, forever. It is impossible to find words to describe that day, or the days that followed as we tried to get to grips with the fact that our darling Bella had died. That we would never see her again. That life as we knew it, the future we had imagined, was no longer our reality.

 

Everybody’s journey with grief is different and James and I were no exception. We grieved completely differently. For the first few months I was in complete shock and just went into cope mode, trying desperately to hold everything together. Holding onto any semblance of “normality”, continuing to work and to function, or at least I thought so at the time. James on the other hand grieved and wept solidly for those first few months, falling apart and I was able to hold things together for our family (he is a crier, unlike me who finds it almost impossible to cry). And then as James started to feel a little more able to cope with life, to function, I fell apart, and James was there to support me and give me the space I needed to grieve.

 

Very soon after Bella died James and I discussed trying to have another baby. We both agreed that we wanted to try and have another child, but James felt that it was too early and that we needed to allow ourselves to grieve before bringing another child into our family. Me, in my “go-go-go, I can cope with anything” way, pushed back against this, telling him that I would be able to compartmentalise my grief and not let it impact on my pregnancy (I look back now and laugh at how naïve I was back then thinking that I could control this thing called grief! 😊) and almost miraculously we fell pregnant again. I truly believed that this little boy that I was carrying was a gift sent to us directly from Bella, that he was going to help to put a bandage on to our broken heart (quite a responsibility to place on an unborn child!)

 

And for the first 6 months our pregnancy went according to plan and I received a huge amount of comfort from this little life growing inside me. And then at 24 weeks I started bleeding very heavily. I was in hospital for 2 weeks with both myself and our little boy being severely medically compromised, and then at 26 weeks and 3 days he decided to enter this world when I had a placental abruption. Our little boy Thomas was born weighing in at a hefty 700 grams. He lived for 3 hours and despite every effort from our incredible medical team, he suffered from huge internal bleeding and died.

 

This was when I really hit rock bottom and James was able to pick up the pieces to enable me to grieve as I needed to. Many of the months that followed are a complete blur to me, as I grieved for my 2 children who had died. It was like I was watching my life from above, completely disconnected from the world and what was going on around me.

 

I have had many people tell me that if their child died they wouldn’t be able to cope, that they wouldn’t manage. And this isn’t true. You have to carry on, you need to keep on living. You are forever changed and you will never go back to who you were before, but life does continue even though sometimes you really don’t want it to. Its funny, my life has been divided into BD and AD – before death and after death – and everything in my life fits into that timeline.

 

Murray also kept us going. We had to get out of bed every day. We had to continue to function, to bath him, read him stories, put him to bed. On that afternoon that Bella died I still needed to bath 23 month old Murray and put him to bed. That day and every day thereafter. And thank God for this. We have been determined to not allow Murray’s entire life to be impacted by the loss of his siblings, for it not to result in the loss of his parents as well. Because Murray is the gift and miracle that we still have, and we need to embrace and appreciate this with every fibre of our being.

 

Isabella 1509: Why we stared the blog.

 

So that’s a bit of insight into our lives and why I find myself standing before you today. You will notice that at your tables you have something for “Isabella 1509”. 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? How could he open up like this and make us so vulnerable. We were putting stuff out there with zero control over what people were going to do with what we were sharing. 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. It is often so hard to find words to explain how you are feeling and I gained huge comfort from reading others insights. So if we in turn 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.

 

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. People really did rally around us, especially in those early days. I didn’t cook a meal or go grocery shopping for 10 weeks after Bella and Thomas died.

 

Loss, it’s all around us all the time. Nobody is unaffected by loss, and everybody’s response to loss is different. What I have learnt however is that society in general is completely ill-equipped to deal with grief. Your minds would reel at some of the things that haven’t been said to me about our children’s death.  I have had some real WTF moments! It is quite bizarre as it’s the only thing that is certain in this world, and yet we are not given the tools we need to know how to cope with it or how to interact with those that are grieving. What I have found is that there are certainly a number of commonalities around what people need and want when they are grieving and I would like to give some insight into that today.

 

ADVICE TO GIVE TO THOSE TRYING TO HELP

• 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. 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.
• Say our loved ones name often, over and over again. We are desperate to hear it, to know they haven’t been forgotten. While it may make you feel uncomfortable it will be so much appreciated. Any opportunity is so welcome!
• 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. It was also amazing how people would just arrive at our house (sometimes people we didn’t know), unannounced in those early days, just to give us a hug
• 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” as this quote shows you.

 

So I have spoken a lot about what others should learn and be aware of and how you can help those that are grieving, but I have also done so much self-reflection in this whole journey, and realised things about myself which I want to share. A lot of this is still a work in progress, because while some people may think, “Wow, it already 3 years since Bella died”, for me its “only” 3 years since Bella died and this is a lifelong journey.

 

Things I have learnt about grief:

• You don’t grieve in a straight line. Grief has its own timeline and rhythm. We all know about the 5 stages of grief – denial, anger, bargaining, depression, acceptance – and while everybody feels most of the stages over time, it doesn’t move in a nice measured, linear fashion (this doesn’t go down well with control freak, goal oriented me where I like to be able to tick things off a list), we can get stuck on certain stages for long periods of time, and we may go back to certain stages at times. And that is okay. As long as you are doing the work, and allowing yourself to feel, not shutting down, you will reach some form of acceptance (or so I have been told!)
• You never go back to who you were before – people speak about bouncing back, but that doesn’t happen, not in my experience. Because bouncing back implies that you go back to how you were before. I have found this loss of who I was before very hard, I have mourned for this too, not just the loss of my children. And getting to grips with letting go of that notion of what life should be is tough. You are forever changed. And this isn’t necessarily a bad thing, but you have to accept this and not fight against it. And then once you have done this it’s about moving from just surviving every day to trying to thrive again.
• The benefits of therapy. 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 aren’t 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. 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, 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.
• Resilience – it’s a subject I have spent so much time thinking about and reading about. Resilience is the multi-facted ability to process, adapt to and overcome adversity, challenge and change. It enhances our potential to grow in significant ways, to build a life that is not just about surviving, but thriving. 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? 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.

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? Sheryl Sandberg talks about it being like a muscle – we all have it but it needs to be exercised to be developed and built. I recently did a resilience retreat. It was one of the most difficult but rewarding things I have ever done. The ultimate in self-care and self-reflection. It was like ripping my heart and soul open and laying it out for all the broken pieces to be seen. I won’t lie, before going I thought I was pretty sorted when it came to resilience. As one of the initial exercises we did, we had to answer 40 questions around resilience and then you got a score depending on your answers. I was sure that I would get full marks for this! And when it turned out I didn’t I immediately started looking for where I could have answered differently to improve my score and be the best at being resilient (competitive much?!). Ridiculous I know!! But the area that it highlighted that I needed to work on was allowing myself to be vulnerable. And particularly for me the inability to reach out and ask for help.

• And so this brings me to one of the biggest things I have learnt in the last 3 years and one I still really battle with. My ability to be vulnerable. And what vulnerability looks like is different for everybody. For some it is saying “I love you” for the first time. For others its initiating intimate contact. For me it’s asking for help and acknowledging that I can’t do it all myself. Brene Brown puts it perfectly. “Daring greatly means the courage to be vulnerable. It means to show up and be seen. To ask for what you need. To talk about how you are feeling. To have the hard conversations”. Vulnerability is not weakness, it is courage. To allow ourselves to be honest and exposed. As a result of courage we are willing to let go of who we thought we might be in order to be who we really are. Again from Brene Brown, “The difficult thing is that vulnerability is the first thing I look for in you and the last thing I’m willing to show you. In you, its courage and daring. In me, its weakness”. Just think about that. For me personally, one of the best things a friend can do is ask me to help them do something – cook them a meal, look after their kids, do a grocery shop, I am sure a lot of us here feel that way, and yet, for me, asking for helping is almost impossible unless I am paying someone to do it for me! And so this is something I am needing to work on. Its also not thinking that people should just know what to do and how to help you (they don’t even though they want to), its learning to communicate what you need and how you need it. It will make you vulnerable, but should hopefully reap huge rewards and develop more real relationships.

I realised at this resilience retreat that my circle of support had become smaller and smaller out of my own doing. I had pushed people away because to continue to share my life and story and be vulnerable became more and more difficult, especially as each tragedy and hurdle emerged “Oh my word, its those bloody Blanckenbergs again!”. It was also that as we had continued to face challenge after challenge, people stopped sharing their lives with us because their problems didn’t seem “big enough” (a common response but couldn’t be further from the truth). And this became a vicious cycle. As we showed less vulnerability and shared less, people shared less with us, we then felt even more ostracised and alone, shared even less and so it went on.  Vulnerability involves listening, validating, and sharing common experiences. When we are in the depths of grief, to have someone open themselves up to the pain of our emotional experience, hold that space with us in a non-judgemental way, and capture the very essence of those feelings by sharing their own stories of grief and vulnerability, is essential. It’s the ability to be able to share common experiences and not feel alone in this journey, the loneliest thing I have ever had to do, that ultimately aids your ability to heal in such a big way.

• Having an attitude of gratitude. Often, when you are thrown into grief it feels like it impacts on every single part of your life and that your entire life is awful and that nothing will ever go right. Sheryl Sandberg talks about it as the 3P’s. 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). I have tried to steer clear from these 3 Ps as much as possible and to remember to count my blessings every day – Murray, James and our marriage, our home, my work, family and friends to mention just a few – and not to allow the tragedy in my life to dwarf everything else. 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. So I have a gratitude journal where I take 5 minutes at the end of every day to count the things I am grateful for that day and to write them down.
• Another biggie for me, and something which I am only really getting to grips with now. The fact that I can’t control everything and that I need to learn that some things will be what they will despite every effort to the contrary. When I was growing up I was taught that if I tried hard enough, worked hard enough, that nothing was out of my control and I could achieve anything I wanted. All nice in theory and very inspirational, but unfortunately in practice it isn’t always realistic or possible. James says that I am the most stubborn and pig-headed person he has ever met. I prefer to think of it as being determined and focused, but I have learnt that even this doesn’t always work! Through our challenges the last 3 years and my single-minded determination to have another child, our fight with infertility which very nearly cost me my life (that chapter is for another speech), I have learnt that sometimes, it doesn’t matter how hard you try and how much you push something, some things really are unattainable. The only thing certain is change. We need to learn to let go of the dreams of what we thought life should look like and embrace what life is instead. Because the one thing you do have control over is the choice you make to how you live your life. You have a choice to thrive rather than just survive, to make this a wonderful life and to live it to the full, if for no other reason than to honour those who didn’t get this opportunity. 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.
• To cry – I hate crying and I find it really hard to do. But I also know how important it is to this healing journey I am on. Just like alcoholics are always recovering alcoholics rather than recovered alcoholics, because they say you can never be recovered and that you will always carry this around with you and have to be working on it, I think that grief is the same and crying is such an important part of this. You never get over your grief, you carry it around with you always – you will always be recovering, rather than being recovered. Grief is complicated. It is ever-present, though its shape may change form. As Kubler-Ross states “…you will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same.’ 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 – a photograph, memory, significant date, insensitive person – 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.

 

So, in conclusion I would like to leave you with a few things:

 

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.

 

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.

 

And so, 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.