The 6 month anniversary of Phoebe’s death is just around the corner. Half a year during which I have constantly tried to make some kind of sense of what is an utterly senseless situation. My emotions overwhelm me and the reality of losing Phoebe is painfully sinking in , but I am trying to stay determined in my pursuit of hope. I must have hope. Hope that I can carve out a purposeful and rewarding life for however long I may still have to live. I have taken this approach right from the start, attacking my search for hope with frantic energy, desperately needing to find reassurance that one day it will be possible to not just survive, but to thrive.
My search for hope and support initially prompted me to seek out other bereaved parents. They are not hard to find, a few clicks on the internet and social media and numerous online support groups can be found. I joined a couple and was buoyed by welcome messages and stories of how people had found sanctuary amongst only those who could truly understand their pain. I heard of how new deep friendships and bonds had been established and how important these had been in terms of providing support. That sounded good, these people would understand what I was feeling, I would find comfort, reassurance and most importantly hope, amongst them…..
However I have discovered that online world of the bereaved parent sometimes has a darker side. I have, on occasion felt like I have entered twisted parallel universe, an angry, bitter and hopeless place. I am reminded of the film Coraline, strangely much-loved by my fearless and quirky little girl. Coraline Jones, the title character discovers secret door in her new home which leads to the “Other World” inhabited by doubles of the real-world residents. At first all it feels like a better place to be, her other world parents seem more attentive than her their real-world counterparts is not as it seems….
As I made my first posts, I was very open about my desire to try to be positive and I tried to offer what I thought was gentle and warm encouragement to others, but it soon transpired that my energy did not sit well with all. I was shocked by a request to think more about what I posted as my positivity was inadvertently having a negative impact on newly bereaved parents….. I took a step back, if I couldn’t find the hope I so desperately needed to find here, where would I find it? I felt lost, rejected and angry. Surely I couldn’t be alone in my approach; an approach which involves trying to appreciate each new day, to push through the pain, to live with purpose. This is how I wanted to honour Phoebe.
I have cast my net wider and I have begun to find other bereaved parents online and face to face who feel more similarly minded or who have offered encouragement or have inspired me either via direct contact or their writing. But, still, in some forums the dominant message can feel like it is one of despair and hopelessness.
The right to this point of view is often fiercely defended, and those trying to take a more positive approach can be vilified if their choice of words is in any way interpreted as critical.I can understand this reaction, the loss of a child is the probably the most traumatic of losses and for many can result in symptoms of Post Traumatic Stress Disorder and / or Complicated Grief amongst others. These are very real psychological disorders. Grief leaves a lasting mark on those who have lost and can be profoundly misunderstood. Sufferers can be insensitively treated in a society where death remains taboo. As a result the bereaved parent can feel unfairly judged and therefore stands on guard, on the look out for any signs of attack. However I feel this can lead unfair judgements with bereaved parent criticising bereaved parent and I find this hard to rationalise. One of the first things you are told when you lose a child, is “Don’t let them tell you how to grieve”. I thought this statement was intended to give each of us permission to grieve in our own way, but I sometimes wonder. Is it sometimes used as licence to unfairly criticise those whose actions and words are actually offered with positive intent?
I recently read an article written by Gloria Horsley and posted on the TCF UK (The Compassionate Friends) Facebook page entitled “Mom Don’t Tell Me You Want To Die”. The focus was on how to care for surviving siblings and the impact that such statements could have on both them. The author seemed to have had a similar response to myself with regard to the desperate outpouring on social media from bereaved parents stating they were jealous of Debbie Reynolds. She talked of the media “glamorizing” the event and of some of the “disturbing” posts she had read. I personally, felt reassured to read that I hadn’t been the only one to have felt “disturbed”. But these words “glamorizing” and “disturbing” hit a raw nerve for some who vehemently defended their right to express this opinion and castigated the writer for minimizing their losses and mocked her suggestions of ways to connect with other bereaved family members or friends. I am under no illusion that going to watch a film with friends or sitting in the sun will cure me of this deep sense of loss and pain, but these are things which I do try, and which do occasionally, in a small way provide me with some sense of relief, however temporary.
Also held to account was Amanda Holden. In a recently published interview, she had been asked about the still birth of her son, Theo at 7 months and the subsequent difficult birth of her daughter Hollie, during which she suffered a massive, life threatening haemorrhage. As a result she suffered PTSD. She talked about not coping and seeking out therapy for a month which gave her a set of tools and helped her to “move on”. “Move On”, a poor choice of words which caused offense. But I rationalised it, to move on doesn’t necessarily mean to forget, to move on could mean to move forwards and with that sentiment I can empathise. Where I am sat right now is a painful and exhausting place and I too am open to any techniques I could apply to help me. The short duration of the therapy was also questioned, how could she get over this loss so quickly? Had she perhaps had repressed her grief? Then elements of competitive grief emerged, perhaps a still birth was less traumatic than losing a child you had known for years …? The level of criticism levelled at her made me feel uncomfortable. Whatever her choice of words, however “false” she may have seemed, it just didn’t feel right to be castigating a woman who had undergone such trauma. She too was a bereaved parent, to me she deserved our compassion and understanding of the truth beyond the journalistic speak. As a bereaved parent I know all about the mask we put on for the outside world so we don’t reveal our vulnerabilities. Moreover she had stared her own death in the face. That has to have a profound impact on you, cause you to grasp onto life with everything you have, doesn’t it? I applaud her determination, I understand why she might choose to talk in this way, but others called her irresponsible and talked of the negative impact the interview could have on other bereaved parents.
So where else to look for support & hope? I have wondered whether I am better spending my time in the “normal” world, with friends. I have heard how some bereaved parents have needed to let many former friendships go in favour of new relationships with those who have trodden a similar path and therefore better understand their feelings and emotions. Many further down the line have talked about their former friends gradually drifting away, but at only 6 months down the line, I have yet to experience this any notable way and so many friends and some unexpected, have reached out and continue to reach out on a regular basis. Do they offer a better source of support closer to home?
No they don’t I’m afraid. The support we have received has been invaluable but as much as I love mine and Ralph’s friends and appreciate everything they have done and continue to do for us , I have come to realise that I cannot function fully in the normal world nor can I draw all the strength I need from it. I’m an outsider and for now at least, I can only live on the fringes.
Ralph describes it as being in a glass bubble and my lovely friend Jen used a similar analogy of a glass wall when describing how she felt after losing her dad; I can see people enjoying their lives, I wish I could step out and enjoy it with them, but I can’t. I fear I will never truly escape this transparent prison and be able to live that freely and without care ever again. There is an episode of Sofia The First where Miss Nettle the bad fairy traps Flora, Fauna and Merryweather in a magic bubble. Ever the feisty heroine, Sofia rises to the challenge, thwarts Miss Nettle and frees them saving the day. But I live in the real world not a beautifully moral Disney cartoon where good always triumphs; There is no Sofia to rescue me! Losing Phoebe has forever stolen my innocence as I now appreciate the fragility of life. Many are lucky enough to be able to dance along without ever realising just how delicately balanced everything is, but my steps are now cautious as I carry the weight of my grief with me. I have read how some bereaved parents choose to retreat away from the non bereaved and I can definitely understand why, but I fear becoming isolated so I keep reaching out and I accept invitations, learning as I go which things I find more draining than supportive.
Noise, I am not good with noise, nor do I cope well with anything that feels like ridiculous frivolity. Booming voices or loud music, noisy, bright places like the Trafford Centre or noisy bars full of young exuberant revellers are a no no.I was very touched to have been invited out on a couple of nights out with the other Reception class Mums. The first night out went ok, food and drinks in a chilled diner style bar. I got upset towards the end of the evening but everyone was supportive and understanding. However the second night out was a very different experience; A fixed menu in a riotous Thai restaurant known more for its karaoke and pass the mike nights than it is for its food! Being honest, I knew it was a daft move on my part, but desperate for the life I had lost and in search of a temporary reprieve from the pain, I accepted. I had been before, many years ago, it had been fun, the main attraction being Crazy Wendy, locally famous for her Elvis impressions. I didn’t manage to stay for her grand entrance this time. My fears were grounded, It was all too much, I felt like I was screaming inside my glass bubble. Once upon a time I’d have grabbed the mike and been ridiculous but now imprisoned by pain I had to get out of the restaurant, I had to run, escape outside to a quiet taxi home.
The noise and craziness weren’t the only problem, I struggled being in a large group, most of whom I didn’t know so I felt very exposed. I was grateful to the mum who sat next to me in the mini bus there who told me she had read my blog, but overall even if it was all in my mind, I felt awkward and conspicuous, aware of my tragic infamy. In the restaurant I found myself stuck at the opposite end of the table from those I knew better so I had to try to make Smalltalk. I tried to take the lead, feeling that those sat next to me may also feel awkward, after all what do you chat about to the lady whose daughter died?? But it was all just too much, too exhausting. It is rare that I get through a day without thinking that someone feels awkward around me, I sometimes feel like I walk around with a rain cloud over my head that no-one wants to see, so I need my downtime to free me from this if at all possible. I don’t want to completely retreat, but I just haven’t got it in me to make superficial chit chat.
As I sat in the taxi home , I also remembered some advice I had been given at the retreat, always go under your own steam, drive yourself, or at least have a clear idea how you might escape and get home. As a bereaved parent I never quite know when I will reach my threshold and turn back in to a pumpkin. It certainly isn’t anywhere near as predictable as the clock striking 12! I was aware of this danger in attending a leaving meal in Dublin miles from the hotel I was staying in. I’ve travelled many places alone, I am a pretty confident and independent person but right now I prefer the security of knowing I can easily leave should my glass slippers start to pinch. Unfamiliar with the city, I admit I breathed a sigh of relief when I eventually made it back to the safety of my hotel room at the end of the night
So I have found that I generally feel more at ease in quieter places and in smaller groups or one to ones. But for me, the conversation has to be real, with people who can look me in the eye ask me genuinely how I am and mention Phoebe. Ralph says he likes to escape to normality but it doesn’t work for me and at 6 months I am now finding that for some there is an uncomfortable elephant in the room. I know its hard, we live in a society which wants to sweep death under the carpet and feels uncomfortable face to face with the pain which is left behind, but Phoebe only died 6 months ago…. please say her name, ask me how I am…It doesn’t need to be a long or involved conversation, it doesn’t mean we are going to spend the whole time in the depths of despair, but not mentioning it at all makes things awkward and tiring for me, my energy levels are much reduced so exhausting is this grief, so I need to be selective how I use them and sometimes I have felt as if it would just be have been easier to be alone.
My friends with whom I can just “be”, however I am at that moment without expectation, I thank you. I also appreciate those who send a throw a shaft of light into my day by trying to reach into my glass bubble and join me rather than the onus being on me to step out. Those who look pleased (!) not daunted or disappointed to see me, those who have gone out of their way to speak to me,to send me a message without prompting, those who have simply given me a hug or touched my arm in passing, you cannot know how much this means to me. I can feel awkward when people call me brave, strong or inspirational but I know they say it with positive intent and love and that they want to boost me. But, at the end of the day, while all of these very dear people want to ease my pain and offer support in whatever way they are able, they can only sympathise rather than empathise and this is why, when it comes down to it, for me, only spending time in the non bereaved world cannot provide all the support I need.
I find myself between the 2 worlds; needing to spend time going from one to the other and sometimes needing to take my leave from both, so I have set up camp on the bridge that I have built inbetween. Ralph joins me here very occasionally, our emotions are still nowhere near synced but we represent to each other the only other person who truly understands what it feels like to lose Phoebe. He prefers to live mostly in the world of the non bereaved, using it as escape, but when we do achieve a rare moment of retreat together it is intensely reassuring.
I suppose living on a bridge could feel somewhat precarious. When this analogy first came into my mind I could visualise pictures of a medieval London Bridge before the great fire, complete with houses and shops, perilously balanced over the Thames. But many modern bridges are amazing structures, like those featured on Megastructures as occasionally watched by Ralph; the Penang Sea bridge in Malaysia, stretching 13.5km between island and mainland across the Penang Strait, The Oresund Bridge joining Denmark and Sweden and the Rio-Antirrio Bridge in Greece joining the Peloponnese peninsula to the mainland .
Right now I can’t live wholly comfortably in either world, perhaps I will never be able to. It can get a bit choppy and scary out here on the bridge trying to deal with the crashing waves of my emotions. But just like these aforementioned feats of engineering, I will just have to try to bend and sway through the rough seas, even if sometimes, like now, it feels like I am only managing to cling on with just my finger nails, so intense is the pain.
I googled to see if I could find any wise quotes about bridges and found this one “If you are good at building bridges, you will never fall into the abyss” by a Turkish playwright, Mehmet Murat ildan. I know nothing about him so please excuse me if he is of no particular note or even controversial, I just like the words. In recent days I have felt so close to the abyss and where it not for words like these and the image of my bridge in my mind, I think the risk of falling in and being swept away would have been infinitely greater. A little more googling and I fell upon lyrics from a song from Pocahontas 2 “And we’ll build a bridge of love between 2 worlds” I know its only a song from a Disney sequel, so we can go with Simon & Garfunkel’s “Bridge Over Troubled Water” if you prefer, but words like these and from the aforementioned quote give me some hope, that all important hope…. They reassure and remind me that while I may not be able to reside completely in either world, I don’t need to. I don’t need to pressurize myself either way, I can build a bridge and choose on a day to day basis to which side I should travel (or not) to draw strength. Of course this is also dependent on a warm welcome from both communities, which I hope continues. I know I have called out behaviours, incidents and examples of things with which I have struggled and which have depleted my emotional reserves, but I have also felt huge support and love in both worlds which I cherish. We are all different and although I may get frustrated, any anger usually fades quickly as I try to rationalise and understand others feelings and reactions, however different they might be to my own. I hope they can do the same for me…….