Loss

Loss is the term used for a number of traumatic events that occur in the span of a persons life – the loss does not have to be final it just has to have a ongoing and profound impact on the way a person responds to it

My brother David

A few years back Robyn and I went to watch a performance. A story I had written about her in 2005 had been turned into an interpretive dance piece. We sat still in the audience watching it play out ahead of us. In walking back out to the brightly lit foyer afterwards we stepped to the side and had a giggle…meeting people who have had the worst happen to them doesn’t mean that there isnt a space for a big laugh now and again. Robyn has shared her story of David with you all.

Have a read.

Robyn – its National Missing Persons Week. How many years has David been missing, what were the circumstances around his disappearance?

David went missing in Iran in November 1993.  He was on an extended trip travelling through Europe and had decided to travel home overland through Turkey and Iran and on to India before heading back to Australia.  He was an architect and interested to visit the various monuments in these countries.  He had been staying in Tehran with a family he had met whilst travelling overland from Turkey.  He was last seen leaving their house very early one morning on November 11, in a taxi headed for Tehran airport.  He was due to fly to Shiraz to visit the ruins of Persepolis, and then meet up with the family in a few days time. He never made his rendezvous.  It was a month later before we (David’s family in Australia) learned that something was terribly wrong.  For several weeks we had been surprised not to hear from David – he had been in regular contact with family and friends.  We all just hoped that it would be difficult for him to contact home due to where he was travelling.  This was pre mobile phones and emails, so communication was far less frequent.  When he failed to call before his flight home, we suspected that something was wrong but still had no proof and hoped for the best.  My parents and I headed out to the airport to meet David’s flight on the evening of December 8, 1993, only to watch all the passengers disembark without David.  This was the defining moment when we knew that something was terribly wrong. It was another month before we traced David’s last movements to the family in Iran (tracked back from an address on a box containing a kilim that he had bought in Iran and shipped home).  Despite family travelling to Iran and extensive investigations involving AFP and DFAT, we have had no further news of his whereabouts in over 18 years.

How do you acknowledge the anniversary as it comes around?

There are so many anniversaries that are significant.  The last day we saw him, the day he was due home, birthdays, Christmas.  The day he went missing, November 11, was also my parents wedding anniversary.  It is also marked by Remembrance Day, which is now particularly poignant for me.  When people pause for a minute silence on that day, I think of David.

Your parents passed away without finding David – did they ever come to terms with being able to sit with ‘not knowing?’

Mum and Dad both died longing for news of what had happened to David.  I don’t think they ever came to terms with not knowing and I believe that they both died with broken hearts.  It makes me so sad that the final years of their life had to be so hard.  I have to make a conscious effort to remind myself that they were not always sad and that a large part of their lives had been happy.  It’s easy to remember the worst times when they are the freshest memories. I keep a wedding photo of theirs in a frame at home.  It’s a close up of just the two of them. They are young and look so happy.  When Mum died I felt like it had been so long since I could remember her being happy in any way. That’s when I got this photo out and framed it. I keep it there to remind me that there were good times.

How do you handle the question – have you got any siblings?

It really depends on the situation. It still conjures up very raw emotions for me, even after all this time. I never say that I am an only child, but how much information I share about David’s circumstances depends a lot on who I am with.  Most people don’t cope well when you tell them that your brother is missing. It’s not a situation people are familiar with and as such, don’t know how to respond. The result can some be insensitive comments – a situation I try and avoid.  Sometimes I will say that I had a brother but he died.  If I feel comfortable, I will share my story.

Whats does missing persons week mean to you?

A moment to pause and reflect.  It’s the first week in August which is also my Mum’s birthday – so again anniversaries seem inextricably tied together with “missing”.

Missing seems to permeate everything.  It’s a huge part of who I am.

 

For more information about National Missing Persons Week or about the only support service in Australia that responds to families click here.

 

Rituals for the lost, is it possible?

But your name is written on my heart forever

And there is never a day when I do not search for your face

Somewhere, everywhere, anywhere

I see a turn of a head

A back that reminds me of you

And I hurry to look more closely

Only to feel despair again

Because, of course, it is not you

D. McRae McMahon (2003)

 

There is much that is missing when a person vanishes. There is the oscillation between absence and presence and more profoundly there is the absence of ritual. I began working with families and friends of missing people in Sydney Australia in 2003. Missing soon consumed my focus and I began to notice gaps that I hadn’t noticed before. I noticed that there wasn’t a section in the newspaper that allowed for people to share their loss, to share what it meant to not have a missing person in their lives or to even publicly notify others that a loss had occurred.

When we think of missing we immediately picture posters with multiple images, not unlike headshots, that only capture the name of the person. The posters only serve to identify the person as missing, not as a person in their own right.

A book published in 2011 by Jenny Edkins Missing Persons and Politics reviewed the power of the images of those missing after the September 11 attacks in the US. The book outlines that missing persons posters serve as a ‘precious remnant, a trace, a proof the person exists. This is a person, a missing person, they proclaim’. So to in the celebrating, so far, is the opportunity for the left behind to say this is who I am missing and this is what they meant to me.

Missing cuts across all sectors of the community and missing can occur in a multitude of circumstances – abduction, homicide, mental health concerns, parental child abductions and misadventure but the commonality is that in the very moment where missing occurs there is a loss that a person left behind is enduring.

I began to ask families, in the early days of working with them, what they did to acknowledge their loss. Some found that a ritual, like a memorial service, was not useful as it was an outward sign that the family had given up hope of a return,. For others they focused on providing chances to come together, some held picnics and some found that just sharing in an activity that the missing person had enjoyed provided them with the space to reconnect with the person that was not here. One of the ideas we shared was to introduce the concept of a celebration, so far. By signaling so far the pressure was not placed on the family to concede anything – to concede hopefulness or hopelessness – it just provided the space between loss and remembering and it was a way to come together and share what the person had offered without labeling them just as missing.

While death and its finality provides the chance to follow a clearly worn path both in religiosity and practicality the process of missing is far more ambiguous. In allowing people the space to create their own rituals of remembering the concept of an ambiguous or unresolved loss might be far better understood by the wider community and in turn create better opportunities for support for those enduring such losses.

Its National Missing Persons Week here in Australia, starting today. I have seven scheduled posts to cover the week. Drop back in or follow #nmpw on twitter to join the conversation.

Have you ever thought about the impact of the loss when a person is missing?

 

 

 

The nest egg.

I watched the family of this poor boy try to find words to convey their trauma and sadness on TV this morning. I watched the camera pan to his siblings sitting to the left of their bewildered parents and I wondered where would they go from here. Not in the years to come but today. Where would you turn if you lost one of your lights? The news reports explained that Thomas was out on his first night to popular area of Sydney, the CCTV footage showed him walking hand in hand with his girlfriend and then he steps out of camera. The power of knowing what happens next makes you want to press pause and rewind over and over again almost trying to keep him in view, keep him safe.

I can clearly remember sitting with a family a few years back in counselling. I had already been working for a few years with people living with life altering traumas – no two stories were the same, they all showed different traits of resilience, of strength. The family and I were talking about the grief of losing a child – replaying over and over the events that led to the sadness, the rawness of approaching anniversaries and that impending doom that nothing would ever be the same ever again. It was an uncomfortable place for me to be sitting too – I was heavily pregnant with my first child and trying my hardest to be supportive and engaging while my own baby squirmed inside of me. I remember as we catalogued the pain they were experiencing – both physical and emotional – that it was like a nest egg. Parenting is like having a nest egg – a giant fund that you contribute to for years and years only for to find yourself one day looking in and realising that it had all vanished in the blink of an eye. That all those years of juggling, of working hard and of hoping for that day that you could sit back and reap the rewards, were stolen from you. I cant imagine walking along one path for so long and then the world throw you a giant detour.

If you take a moment to read the blogs, the magazines, the news sites about parenting you find that the elusive work life balance gets thrown around on a daily basis. We wish away the early years full of sleep deprivation and tantrums, we struggle through the primary school years where it feels like the bell rings almost 5 minutes after school starts  and then we hold our breath as kids reach the years where they dip their toes in the world of independence.

There is no way of holding them back, of keeping them wrapped up at home because like many of us; we went out at night, we found ourselves in precarious situations and many are still here to tell the story. The randomness of it all means that there can be no preparation for it. No amount of counselling or supportive words changes what has happened. So sad.

How do you juggle the need for kids to assert their independence with your fear of what could happen to them?

 

Missing You – a TSIB book review

Over the last week its only been about missing people in my little corner of the world. Last week I spoke at the National Missing Persons Conference about the disconnect between the way the media speak about families of missing people and the way these families describe themselves. In the telling of the missing persons story, their stories seem to get lost in the process. The story of being left behind is not often loud because the need to search is the priority.

One of the handful of families that attended the conference last week was Loren. Loren and I met online last year through the editor of Mamamia. I recognised her from her little profile pic that Id squinted at the morning of the conference so that I knew who to look out for. Lucky she was wearing her glasses. Loren’s brother Dan is missing, the day we met in real life was a year to the day since she’d seen him. The word yearn is not a word that pops into peoples vocabularies these days but Loren’s pain and desperation and longing for ways to find her brother and bring him home radiate out of her. Her yearning is visible. In a sea of unfixable challenges the need to fix it for her is palpable. The same can be said for most missing persons cases whether we hear them face to face or from afar.

Five Mile Press sent me a copy of Justine Ford’s new book to review on my blog because of my interest in the area of missing.  Missing You – Australia’s most mysterious unsolved missing persons cases – catalogues twenty stories of unsolved missing persons cases in Australia. Ive read a lot of true crime stories over the years and especially so in the last year as Ive moved from the counselling world to the research space – its been an interesting ride. Justine’s stories are told with respect and compassion about the multitude of situations people find themselves in when they vanish and the trauma of being left behind. Some of the names – Jamie Herdman, Christine Redford and Bung Siriboon- were familiar to me and others weren’t. They were the ones I was interested in.  Families of missing people, the longer the person remains lost, have to compete for space to get their story noticed, they have to find ways to engage and then reengage the public to remind them that they are still searching, still yearning for answers. In the telling of a story in Justine’s book she was able to share a piece of that person – it made them more than a missing person, it made them real. The cataloguing of clues, of Police insight (which seemed to have been provided with cooperation in this book) and the perspectives of loved ones, of forensic professionals and the stories of those that are found but not yet reunited with whoever may be searching for them is provided with enough space to give you a sense of what it might mean to not know where someone is.

One of the later chapters sums up the need to keep the interest alive – no matter how much time has passed. Linda Stilwell, was snatched from a funpark in St Kilda in 1968 at the age of 7. Her mother recalled that even back then people expected her to cry more than she did. Like many of the families Ive met over the last decade the challenge in living with a loss that may not be permanent means that those conventional ways of grieving, of releasing the sadness about the loss makes it difficult. It makes it difficult for people to truly understand what it means to live in that space of someone being both here and gone ‘all I would like is to be able to give Linda a funeral, not be thrown away like a piece of rubbish’. Telling her story 4 decades later and still pushing for the truth through the coronial system just goes to show that families of the missing cant simply move on from their grief.

Its not often that a book gives a space to the grief of an unresolved loss – this book isn’t just for people with personal experience of searching of missing but for the wider community wanting to understand more about the need to bring them home. Its unfathomable that someone can be here in a moment, gone the next and that no one has the pieces that complete that jigsaw puzzle. Someone, somewhere, must know something.

Missing You is out now. For more information about Justine Ford’s new book click here

For more information about Loren O’Keefe’s search for her brother, join her search on FaceBook.

Linking up with #ibot

What garden path? a TSIB interview

Tash contacted me a few months ago asking for some room to explore her space between her man and his illness. After a few speed bumps we managed to get the interview together and what we finished up with was a poignantly funny piece about living for now, having a love and hanging with your soul mate. I get a little frustrated by the continual sharing on social media sites of inspirational quotes – they depress me, more than uplift me as we can’t all be up all the time. Its ironic then that I think Tash’s next business venture should be  writing little manifesto’s for just getting on with it!

Its bloody cold in Sydney at the moment, so pop on a pair of daggy old slippers (if you’re in these parts or swan about with your skin showing if you’re lucky enough to be in a warmer climate) and sit back and learn about what it means to love, in sickness and in health.

 

Tash…tell me a little about you

Hello!  My name is Tash and I am 26 years old. In the past year I have moved to Ballarat in Victoria, with my partner Chris. I really like to make things, dance in my lounge room on Saturday nights in my pyjamas, read-lots and I love comedy of all sorts. One of the most important things I think we need in life is to laugh. And be comfortable. (Hence the pyjama pants)

I live with my ‘Chef-man’ Chris, Matilda (our Border Collie) and Mary (our cat). We moved to Ballarat from South Australia because we were not happy in SA and we needed a fresh start. We both were in jobs that were unfulfilling, and we could not work out where to go next. We had had a few years of really average things happening-Chris has a form of bowel cancer called ‘Lynch’s Disease’ (officially called the very scary sounding, Hereditary Nonpolyposis Colorectal Cancer) and quite frankly we were both emotionally tired and felt like we were facing a dead end.

So we packed up our life, put our houseboat up for sale (yes we lived on a houseboat!) and drove to Ballarat. Now we live next door to my brother and sister in law-we even have a gate in out back fence. I feel like I escaped. I am so happy in Ballarat and love our life we are building together.

What makes you love Chris like you do?

So many things Sarah! I think he is marvelous…right now he is sitting across from the couch from me, watching QI with a glass of wine. He is laughing at Bill Bailey, with our Border Collie curled up next to him. I feel very lucky to have his love, I feel very blessed to be sharing my life with him. I like that he can laugh at me when I am grumpy and make me laugh at myself too. We play cards together at the pub. He writes me cards for Mothers Day from Matilda and Mary (our cat), his laugh is deep, his soul is large, he has kind eyes and a slow smile that creeps across his face.

When we met we would talk for hours, all through the night. He is the strongest person I know. He has to face the reality that one day, the cancer will come back. He has to have tests every three months, for the rest of his life. He does not get the luxury of remission.

We are 23 years in age apart. We fell in love whilst working together (oh God it was complicated!) We danced around the concept for about a year before we finally bit the bullet, had a massive fight on New Years Eve and ended up kissing that same night, somewhere on the Murray River.

I think one of the main reasons I love him is because he adds so much happiness to my quality of life. We love going for long country drives together, poking about in markets and spending nights in with cheese, wine and a good movie. We are a partnership and we support each other in the ways that the other can not.

How does illness live between the two of you – is it there some days and then forgotten on others or is it always in the background?

Chris has a hereditary form of bowel cancer. It is in his DNA, his father died from the same form of cancer, and his brother has the same cancer too. (a real shitter eh?) We have dealt with numerous operations and rounds of chemo. Chris is currently in the clear, but he did have a tumor removed from his shoulder last month. Lynch’s Disease has an increased rick of getting other cancers too because of the mutations in his DNA.

We live in limbo. We do not plan a future, perhaps further than a year. Being 26, most of my friends are starting to think about kidlets and marriage but Chris and I know that we will not have kids, because his cancer is hereditary, which is something which I have learnt to accept, as much as one can anyway. Our everyday is the same. We live exactly the same life that everyone else does – rego, bills, dreaming of holidays – but there it is, always hanging around the edges, the sinister. We are scared that it will come back. Every three months, there is the slow build up of tension before his tests (Chris calls it his turkey basting-I’ll leave it to your imagination!) then the waiting for the results, then the release when it is all-OK.

I think the thing that we try to remember is that if we did not follow our hearts (as clichéd as it sounds) we would not be sharing this experience of our relationship. It was not an easy decision for either of us to let go of our individual fears and jump in.

I definitely do not regret it, and I am pretty sure Chris does not either!

How do you sit not knowing what the future will hold? 

I have never worried about the future prior to Chris and I definitely do not focus on it now. I have learnt that you never ever, ever know which garden path you will end up dancing down, and that is honestly what I love about life the most. This may sound strange to some people, but I would rather have a wonderful time with Chris now, and in the future when something does happen to Chris, I can hold onto the wonderful memories we have created. I know, that because of my age, that there is a possibility that I will have another partner in life-but then again, I may not. Who knows? We concentrate on the here and now, and what makes us happy. I hope this does not come across as sounding frivolous and shallow. But there is no point in worrying. You will miss things that happen right in front of your nose.

What would you say to people in a similar situations?

Do what makes you happy. Accept whatever may come will come. Tell everyone you love them, all of the time.

Live for today.

Make sure you are happy with your doctor, and then trust everything he says. Do not Google any medical terms/symptoms EVER. Be gentle to yourself. Utilise services that are available to you, social groups, doctors, everything. Remember that when things are really, really shit (and they will be!) that you will be OK.

Surround yourself with people that make you feel safe. Make sure you laugh a lot and fill your life with colour and love.

I think the main thing I have learnt is that I am strong. I can deal with most things that come my way. That is not to say I do not cry, or get angry, or feel weak some days. I have learnt to be very content in the right now.

To not worry about the future.

To not worry if the couch is old, or if we have an old bomb of a car, or if we do not know what we will be doing in five years.

I wake up every morning with a big black dog that runs in and jumps on us as soon as she senses we are awake, a little cat that sleeps on my feet at night and next to a man who loves me….even with bed hair.

—————————-

Thanks Tash, its hard not to get caught up in collecting what we thing we need when what we want is some chances to laugh and be surrounded by people we love. I must admit Im also partial to a poke around at a good market too! Tash also writes a blog which you can visit here, if you liked Tash’s story and you’re new to TSIB jump over here and read some of the other interviews. Im always happy to chat with other people about their space in between…

Oh and yes, Dr Google is never a good idea.

 

baby faces

I loved this list from the late, great Nora Ephron. I think I have seen ‘When Harry Met Sally’ 72000 times.

It got me thinking what Id put on my list. It got me thinking about the anti-bucket list I developed last year. It also got me thinking about the impact parenting has on me.

Its Red Nose Day today here in Australia. Chrissie Swan wrote a lovely, eloquent piece on what she remembers from being a kid when she first released that people sometimes lose their kids. I was watching a TV show last night and my girl was perched on the side of the lounge. How is it that there can be 3 other seats available but kids have to sit right ON you? The story was about a mum who lost her little boy to SIDS last year. My daughter sobbed for about half an hour after the story – she asked to go in and check on her own brother to make sure he was OK. I kept asking her to talk to me while also thinking why the hell did I let her watch with me – but like Chrissie said I dont know how you hide the world from your kids – do you shield them from it hoping to keep all the yucky stuff out or do you open it all up for them to peer in to. Being asked questions that start with ‘why’ mean that I always stumble for an answer, because after 10 years working in the grief world there will never be an answer for those questions. I talked to her about life and love and we made a list of things that we should be grateful for, the things that will stick out when we’re old and wrinkly, the things that wont even rate…it went something like this.

Wont miss

Waking up early for swimming

Broccoli

Homework (that was me)

Bad Coffee

Bossy people

Miss

Hugs

Merit awards

Friends, best friends

Grandmas

Laughing  until your tummy hurts

Uno (or Unit as my girl calls it)

Snacks

I calmed her down and she opted to sleep in my bed until I popped her into hers later on. I carried those big, lanky limbs out of my room, around the corner to her bed filled with 100 toys and tucked her in. The face still looks like the baby I used to stare out, like most mums I held my breath after both my babies had started sleeping through the night worried as I stepped in the room that something dreadful had happened during the night. I still check on all the kids at random times through the night. Watching. Waiting. Admiring (and secretly relishing the quiet)

You can donate to SIDS and KIDS or to River’s Gift or just raise awareness where you can. Cliched as it as, hold your bubs tight, talk to them openly and wipe away the tears when they learn that it isnt all rainbows. Im not sure if I tell my kids too much, I also know that I cant take away their empathy for other people. I figure its better to have it, than not.

Share this post if you think that coping with loss is about sharing the message.

Whats on your hit and miss list?

 

I type it loud.

When I worked in London just after the millennium bug didn’t hit, I worked in a time-warp. There was only one computer to share between 4 people. We would fight each other for who got a chance to tap out a court report or a care plan for a small person or a letter to a school imploring them not to expel someone.

On the off chance that I did get to use the machine Id sit down and punch out as many words as my small fat fingers could manage. Neatly presented chronological explorations of children ready for adoption and words of respect for those little ones ready to go home. The guy next to me used to laugh like a big old bear, a Scottish bear, he told me I was like a meerkat…Id put my head down and get busy with my hands and then pop my head up occasionally. Staring out into the middle distance for inspiration and then burrow back into my world again. I still type loud, its my fingers trying to catch up with my thoughts. They come thick and fast.

I was working from home on Tuesday watching the live streaming of the Azaria Chamberlain disappearance. Its part of most Australian families history to have had a chat, or 11, over the dinner table about a little girl who was no longer here. I cried watching the Coroner deliver her respectful findings to the family, taking care to look right at them, giving a space to acknowledge Azaria as someone other than a missing child. She spoke of the child as their daughter, not a newspaper heading.

Sometimes in the world of caring people think that you had to have gone through the same experience as another to be able to reach out the right hand to them (right as in helpful not right as in left and right). I disagree. I have been through little blips in my life where the world hasn’t been fair, where Ive sat alone in the living room trying to cry silently without waking anyone but I dont have to be traumatised to understand trauma. I don’t have to lose to understand loss.

Lindy Chamberlains interview explored not only why the findings were not cause for celebration (Im always perplexed as to how this can ever be viewed as good news, the truth about the death of a child) but her thoughts that the Coroner may have had her own experience of loss, to have reacted with such personal thoughts, didnt make me nod.

Ive never walked the path of any of the families I’ve worked with. I don’t have my own experiences of trauma at that scale. The thing is, I don’t think that everyone wants to yell ‘same same’ when they need help. If you’re someone that cares about the people you love then its easy to care about what other people have lost.

You think?

  • Published June 15, 2012
  • Author
  • Category Loss

No other explanations…part two

 

Thanks for popping back this evening to read the second half of this lovely interview. If you didnt read the previous posts click here to have a read.

Like I said in my opening last night one of the main reasons for asking to Emmanuel to chat was for me to learn more about how we, as helpers, look after ourselves. Also a couple of years back I hosted a roundtable for siblings who had someone missing – it was the first time many of them had been given the chance to share their story. Their story away from the glare of their parents, away from other people’s interpretation and without having to worry what their words might mean to others.

These ideas shaped the remainder of my questions.

Here it is….love and light to you all x

 

Working in the trauma field how do you manage looking after you?

To be honest I probably look after myself rather badly. Part of my job is listening to other people’s problems and trying to help them in some way. I always thought if I listened to other people’s problems then I could forget about my own to some extent and not have to worry about what wasn’t working in my own life. The problem with that is that your own problems never really go away and at some point you will need to face your own issues.

Self-care and being kind to yourself is definitely something that you are aware of when you work as a counsellor and it is something that gets discussed in supervision especially. I think it is important to have rostered days off and not to feel guilty about them. When you do it is important to do something nice for yourself and to enjoy it.

The hardest lesson to learn is not to take work home. In the early days of my career I was very bad at that and would think about clients on the bus or at dinner and even before going bed. The more experience you get the easier it becomes to switch off and to detach from work at home.

One important element in all of this is never to talk about work at home or socially. Friends and family have a curious fascination about your job when they know you are a counsellor. Other than the obvious privacy and confidentiality issues, I find it is easier not to talk about work generally when out socially. Having a clear distinction between your life at work and your life outside of work is very important.

Some things I do specifically to take care of myself include going for long walks and learning to meditate. After spending an 8-hour day listening to people talk and then responding in turn, it is very nice to not have to do that when you get home. It is important to me to have that down time when I first get home of not having to engage in any conversation and to spend some time unwinding. I need at least an hour when I get through the front door to unwind and switch off.

The flip side of that is that when you have a particularly bad day or are working on a case that challenges you and pushes your buttons it is important to talk about it in supervision and with your manager so as not to take it home. Having a high level of self-awareness is also very important because you need to know what pushes your buttons and why. If you know the answers to those questions then you usually know what you have to do to address the issue.

Does the wider community understand the losses you have endured – do you feel confident to speak about your experiences?

I often talk about my brother’s death with those closest to me both personally and professionally. When my brother died I got an enormous amount of love and support from work colleagues. All my team came to his funeral and most of them had never met him. The support I got from work colleagues made it easier to talk about.

On the downside I can’t hide from it either. Now that it has been nearly 5 years since he died it isn’t as easy to say to them I am having a bad day because I miss my brother. People look at you funny as if to say, “how much longer is this going to go on,” or “aren’t you over it yet.” I am more selective with what I tell them now. I am open about his birthday and anniversary of his death and Christmas being a hard time, but find that I talk about him less and less at work because I no longer get the support and understanding I did initially.

My brother died on a Thursday and for the longest time Thursday was the worst possible day of the week for me. I could barely function and I could hardly breathe or cope with work but somehow you find a way through it. I would get home as quickly as I could and then I would lock myself in my house and close all the lights and just sit and stare in the darkness and allow myself to feel the grief. I don’t do that anymore but I think for the first 2 years every Thursday was like that. Now I can get through most Thursday’s without feeling this way but if I have a bad Thursday I won’t talk about it because it takes more effort to explain why rather than living through it.

With regards to family and friends it is often hit and miss these days. Many members of my family that were close to him miss him just as much as I do. My brother’s death has had a devastating impact on lots of people. Yet any discussion about him is left to me to generate. They often say to me we don’t want to upset you by mentioning his name and talking about him, but sometimes I wish they would! Not talking about him and my paranoia that they may have forgotten him is infuriating at times and I wish they would communicate more about what they are thinking and feeling.

Most of my friends have been very supportive and have been an excellent outlet for me, but they have also been the ones who have said some of the most hurtful things. I saw a bereavement counsellor for over 2 years after Theo died and I remember talking to a very close friend of mine about the fact that it was coming to an end and how anxious I felt about that. Her response was – “it is about time you stopped seeing the counsellor – now he can finally support someone that needs it!”

What do you think people need to know to understand more about sibling loss?

Bereaved siblings are often called the ‘forgotten mourners.’ All the attention whether rightly or wrongly seems to go to the parents and any other surviving family members that your sibling has (i.e. spouse/ children). As a sibling you are made to feel that your grief is not as important and for some reason you are never able to fully acknowledge the devastation that you feel at your sibling’s death.

Anniversaries and holidays are especially difficult because for some reason most people ask you “how are mum and dad coping?” It amazes me that these people never stop to think that I may not be coping or that I may need someone to talk to at these times. Christmas especially is like that. My brother loved Christmas and would get excited about decorating the house and buying presents for those he loved. We haven’t decorated the house since he died and I find it hard to celebrate at all, but we force ourselves to do so knowing how much he loved it.

Prior to my brother’s death I never would have thought that there was such a thing as competition or a hierarchy of grief, but as a bereaved sibling you are constantly made to feel as if your grief is not as important as what others may be and you are definitely made to feel as if you are at the bottom of the pecking order.

When my brother first died I thought that it would be fairly easy to find some literature and books on sibling grief. Reading has always been an outlet for me and I respond well to structure and guidelines. To my astonishment that was not the case. If I was lucky enough to find a section in a bookshop that had more than one book in that area, inevitably there were no books on sibling grief. There are books on just about every other type of grief but yet again siblings are largely non-existent in the literary world.

Similarly I thought it would be helpful to join a group where I could listen to other bereaved siblings and hear what they had to say and how they deal with their grief. Yet again this proved to be virtually impossible. To the best of my knowledge there is no adult bereaved sibling group in the whole of NSW. Young children who are bereaved siblings get lots of support and interventions and yet are left to fend for themselves when they become adults.

So I took matters into my own hands and created a support group for adult bereaved siblings. I joined The Compassionate Friends NSW which is a worldwide volunteer organisation supporting bereaved family members. Through lots of advocacy and hard work I established its first adult bereaved sibling support group in April 2008. I subsequently also became the siblings representative on their council for a 2 year period.

Society in general just doesn’t recognise adult sibling grief. I think part of the reason is that people are surprised to know that my brother and I were very close and I miss him dreadfully. As adults we sometimes have antagonistic relationships with our siblings and there is this perception that adult siblings aren’t as close as they were when they were younger. This is not always the case. Through my group I have met many adult siblings who had positive and loving relationships with their siblings and who feel the same way I do.

I don’t know why sibling grief is not more widely recognised or considered in any way. Especially as an adult I feel that there are certain expectations that I am able to ‘cope’ better than I have and I feel a lot of judgement when I tell people that I still have bad days and find it hard to get out of bed and do what I have to do. People’s initial response is something like “aren’t you over it yet,” or “it has been nearly 5 years and you really need to move on.”

Of course on a superficial level I have moved on. I continue to work and eat and sleep and go through the motions of living my life. I have travelled and am currently studying and generally do everything I can to keep myself busy. Yet there is a part of me that died the day my brother died and that part of me will never be brought back to life. As much as I want to I cannot pretend that my brother hasn’t died and that his death hasn’t affected me in profound ways. I just do the best I can to get through each day the only way I know how. By the same token I don’t mean to paint a bleak picture and I am not severely depressed or suicidal. I just think it is important to acknowledge the sadness I feel and the reasons why.

The best advice I have received since my brother died is 2 very simple things. A good friend of mine in America wrote to me in the days after my brother’s death and she said to me that all I needed to do was to put one foot in front of the other and to try to keep walking – left foot/ right foot/ left foot/ right foot etc. I didn’t need to do anything more than that in the early days. That took an amazing amount of effort in itself but was something I could relate to.

The other piece of advice I received was to remember to breathe. As simple as it sounds it was something I would often forget to do. When things are so overwhelming and I feel as if I can’t possibly go on and the pain and grief is unbearable all I have to do is simply remember to breathe. Just breathe.

So as simple as it sounds and for whatever it is worth, that has become my mantra now and I remind myself of it on a daily basis – remember to put one foot in front of the other and to breathe whilst I am doing it!

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I dont have any questions to pose at the end of this. I just think that its important to sit with the words. Thanks M x

No other explanations…a TSIB interview

 

I asked a good friend who I met through my own space between, that being my passion about my work and me as a person, if they would be interested in chatting on here. We clicked the first time we met over the phone, he was calm and measured and unflappable. The opposite of me. Part of the reason for asking him to talk was I was to see how he dealt with the intersection of life and loss when you deal with it everyday at work. At some times in my life I haven’t been very good at juggling the two things. I can remember my life falling apart as a single mum and then having to back it up and tell a woman her son had died. Ill always remember another social worky buddy of mine who looked out for me that weekend when I thought the weight of the world would literally crush me.

Ive split this interview over two posts…I wanted people to sit with the honesty thats spoken here. I wanted people to give it the respect and time it needs, to honour someone who has put their heart on the page and shared the darkness and light.

Grab a seat, eat some of that leftover Easter fare and learn something about those people whose job it is to step in at bad times in life. His backstory is amazing…

 

So M…tell me about you?

My name is Emmanuel and I’m in my mid-30’s. I have a degree in social work and I’m currently employed as a counsellor. I am the oldest of 3 boys from an Australian-Greek family. From the age of 14 I knew I wanted to be a counsellor of some sort and am grateful to have found work I am passionate about. My family is typical in many ways and yet sometimes it feel as if there has been a dark cloud hanging over my family for many years.

My father died when I was 3 in quite traumatic circumstances. He was killed in a workplace accident. He was a painter by trade and fell off a ladder from the roof of a 3-storey building. As he fell he landed with the paintbrush handle going through his eye. He was taken to hospital and they operated to remove the paintbrush but he was declared brain dead. He was on life support for 3 days and then died when he stopped breathing of his own accord. He was 27 when he died. To this day I have not heard of anyone else dying in this way and I guess it is one of those things where you all you can say is that it was a freak accident and there really is no other explanation.

My mother remarried when I was 7 and my brother Theo was 5. They subsequently had a child together (my brother Peter). Growing up I felt as if I had to keep my thoughts and feelings about my father a secret, as he was never openly discussed in my home or by my extended family. Even now that I am an adult no one really talks about him and no one mentions his name. I acknowledge his birthday each year alone and the anniversary of his death too. No one rings me or texts me to see if I am okay. Other than my mother I really have no one to share these feelings with. I guess people think that given I have had a substitute dad all these years there is no point talking about or remembering the real one.

My brother Theo had contracted meningitis as a baby and was left hemiplegic (which basically means one side of his body was paralysed). He was subsequently diagnosed with epilepsy when he was 19. The doctors told us there was a direct link to his childhood meningitis and the brain trauma he had suffered. Over the next 8 years we supported him the only way we knew how – by loving him and giving him the space he needed to live his life with this affliction. I’d like to think that I understood as best as I could what it must have been like for him but I suspect I really had no idea. Theo’s seizures were what they call tonic-clonic and he would have an epileptic fit every 6-8 week’s.

Initially it was well controlled with medication, but over time the medication only contained the illness. His doctors had warned us that if he had a seizure that was severe enough it might kill him, but we didn’t really believe it and we never thought that it might happen. Sadly we were wrong. On 28 June 2007 Theo had a seizure and never woke up. The official cause of death was cardiac arrest, which had been induced by hypoxia to the brain following the seizure. Theo was 27 when he died, the same age my father had been and the irony of this is never far from my thoughts.

In thinking about your life what is your space in between?

I guess for me everything boils down to a life before my brother died and my life since he died. My space in between would be the delicate balance I have of continuing my relationship with my brother even though he is no longer with us in the physical sense, and trying not to allow his death to overwhelm and consume me.

I think also my space in between is the space where I can be completely honest with my feelings and emotions surrounding my brother’s death and the fact that I think about him every day and miss him dreadfully, versus the space where I am expected to put one foot in front of the other and get on with my life and continue to try and find joy and happiness when a lot of the time all I feel is sadness and despair.

Grief is such an individual thing and the intensity and rawness of it is something that you can never fully be prepared for. Even though I had lived the majority of my life with my father’s death, I was completely blindsided and torn to pieces when my brother died. The unresolved grief I felt for my father also manifested itself following my brother’s death and this has been difficult to cope with at times.

Space and time are such strange creatures. When Theo first died I remembered time dragging by so slowly. Everything related to time seemed to be out of balance. I wasn’t sleeping properly. I didn’t eat for about 2 week’s. I was living off coffee and cigarettes literally feeling as if I was slowly losing my mind and was convinced that I was going crazy. My senses were affected in the strangest ways. Everything seemed louder and noisier. Things smelt more powerfully and I felt completely disconnected from the world. It was as if time stood still, and yet all around me life continued to go on. I just didn’t feel as if I was part of it.

Now I can hardly believe it has been nearly 5 years since my brother died. That is my current reality and yet how can that possibly be? It honestly feels as if it happened yesterday. When you have moments when you look around you and realise it is 2012 and not 2007 anymore, you start to panic for a minute. You start to wonder about all sorts of things. What have I done with my life since my brother died? How have I managed to get by? More importantly how could I have lived this time without him? Am I honouring his life and memory with the choices I am making today?

The answer is I don’t really know sometimes. All I know is that now my space in between is a constant merry-go-round. It is a rollercoaster ride that never ends and I am on a journey that I will need to navigate as best as I can with the resources that I have at my disposal.

 

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The second half of the interview will be up tomorrow….I think that multiple losses, regardless of how far apart they are, are ones that we dont understand. As a society we are not accustomed to the ambiguity of loss, we don’t necessarily understand the impact of each loss – I think when concurrent losses happen they can be viewed in unison and as direct impacts on each other.

I also wanted to say that Im always so amazed that people are so open and willing to share their piece of the world with me. If any of the content in any of my interviews are confronting please visit the Your Space In Between page for details of support services.

Has anyone dealt with multiple losses…how did you survive. Did time speed up or did it feel like the second hand on the clock was ticking so loudly that it was deafening?

The backstory

image from here

I was reading an article while my boy slept on the backstory authors have in the process of writing a book. The little pieces that get you to the point where you are ready to begin the story-telling.

I can remember a few months back when I talked about people’s little bio’s. The little snippets of themselves they give in three sentences or less when they meet someone new. Im thinking of starting a new one as I discovered this week that someone typed into google ‘can a baby be born in space’ and found my blog. Astronaut is the new addition to my bio.

Both blogging and life often start with a backstory. A reason to explain where you are, how you arrived here and what you’ve got to say about it. I notice that most of the time when people start a blog its born out of something that happened to them that shapes them into the writer they are today. Some of the backstories come from places of trauma and sadness, of the need to overcome adversity or just an attempt to make meaning from their loss. Sometimes in the sharing of the backstory the unravelling of what brought them to that moment becomes clearer.

I was having a text chat with an old friend (because who has time to actually speak on the phone??) and we were talking about the over-sharing phenomenon that happens to certain people. Having a social work degree doesnt always extend to after business hours but the listening skills you develop mean that if someone is going to make a graphic disclosure about their backstory at the park, at the dinner party or waiting in line at the supermarket its going to be us. I dont have the heart to stop people even when Im late or tired or all full of other peoples stories. The backstory share is the challange of a kind face Im told.

I think when stuff happens that make life more difficult we tend to get frozen to that time. Its as if our lives become the before and then the after and the space in between becomes the material for the backstory that impacts on the stories we are telling now.

Does your backstory impact on the one you’re telling now? Do you share it with other people?