Other People’s Pain, Other People’s Joy…….

On Thursday morning last week I woke up with an intense pain in my chest. It caused me to hug Phoebe’s reindeer which I’ve taken to bed for comfort for months now, tighter, desperately wishing for the pain to subside. I knew I would have to take things slowly, breathe deeply and just accept that it wouldn’t be possible to get to work for 9am. Mornings like these call for moving slowly and deliberately, for being gentle with myself as I prepare to face the day and try to push on through.

In the first few months after Phoebe’s death every morning was like this; I’d wake and have to face afresh the realisation that it wasn’t a bad dream, she was really gone. I’d feel sick and I’d have chest pains. I’d frequently feel groggy; a downside from the Zopiclone I needed to ease me into the sleep I so badly needed each night.  I worked around this, getting up more slowly, a ritual ginger tea quietly in bed before creeping toward the shower which I would pretend had magical transformational powers to wash away the pain and to prepare me to face the world.

When I returned to work, I did it on a phased basis starting later in the morning and initially working shorter days. I must have eaten the coffee bar completely out of ginger biscuits as I nibbled on them each morning to quell my persistent nausea and I kept the beta blockers prescribed by my GP, at hand to help me deal with the pain in my chest. It was months before I  attempted the early morning flight to the office in Dublin. Until very recently, I opted to go over the night before instead. But gradually things have got better, easier. I have been able to ease off the sleeping medication and get to sleep more naturally only taking a Zoplicone as an emergency measure now and then. As the weeks passed Phoebe’s death has begun to sink in a little more, or at least I’m more used to her absence, I am no longer knocked for six again each morning. I’ve been able to get into the office increasingly often for 9 and in the last month or so have resumed leaving the house at 6.30 in the morning once a week for the 8am flight to Ireland.

I am proud of my progress but it has not been without enormous effort and the pain in my chest remains, mostly as a persistent but manageable dull ache but it’s there all the time none the less. I have been told that it will eventually dissipate, but I think this will take a long time. I believe myself to be a strong and determined woman, but I am undeniably vulnerable. Through Cognitive Behavioural Therapy (CBT) I have learnt a lot about the difference between thoughts and feelings and about the physical manifestation of the threat system but I don’t manage to apply the tools consistently, I am human after all.

I can be especially sensitive to other people’s pain….. It is almost as if I have sensors which are working overtime which detect other peoples trauma and distress like built-in radar which rarely switch off.   The news and social media are full of tragic stories; before we lost Phoebe, I would read and pause, I’d acknowledge the sadness but move on, continue with my day, it might linger with me a little, but overall it would be a brief interruption rather than the complete derailment which can now occur. I wouldn’t have taken the pain with me, it would really only have lived there in that moment. But I have a habit of taking it with me now, I respond to others pain and tragedy much more intensely than the average person. I now empathise rather than sympathise. I can soak up their pain like a parched sponge until it’s utterly soaked and heavy which can then stop me in my tracks, too weighty to carry. Unless I take action I’m catapulted back into the heart of my own pain  and I then struggle to control my spiralling emotions. My anxiety rises and the dull ache that I have become accustomed to intensifies to the point I need to hold my chest and struggle to breathe comfortably. My throat constricts and tears well up, sometimes just leaking down my cheek as I try to calm myself and get back on track, but sometimes I’m too far gone and the floodgates open releasing uncontrollable sobs.

This is what happened last week. During a week of tragedy and emotional triggers I let myself be drawn in. I can feel myself being drawn back in now as I write and my chest is tightening in response…. “Drawn in” is an accurate description because I do feel that I have a degree of choice, not to not empathise, I’m not suggesting I can switch my feelings on and off like a tap, but I do believe I have a choice when it comes to navigating a safe course around the inevitable triggers which appear in the road each day. I have learnt a lot about what is likely to leave me staring into a pothole of despair and what helps me steer around it maybe a little bumped but able to carry on the day, like a near miss in the car, when you see what might have happened causing a sharp intake of breath but which you let go as you carry on with your journey and arrive safely at your destination.

I have, for example, discovered that I don’t always cope well with the mass sharing of photos of their children amongst other bereaved parents. I understand the importance of being able to do so and I try to participate, keen to make connections with others who understand the pain and loss of a child but I often post and run. Scrolling through pages and pages of beautiful children no longer with us is more than my heart can bear. I wish I could offer these other bereaved parents more words of support and comfort but I struggle and I have to look after myself and walking away and immersing myself in another task, particularly something productive is often the only way for me.

So why couldn’t I, why didn’t I take similar steps to avert disaster when I logged onto Facebook in Dublin airport that Wednesday evening and saw the multiple posts about and news coverage of, Saffie-Rose Roussos’ funeral at Manchester Cathedral? Why did I click into the video clip of the slide show of photos shown, I believe, during the ceremony, and let myself be taken back to compiling photos last September for the celebration of Phoebe’s life? It was so important to me get every detail right, for the right photos to be paired with the right pieces of music. It was so important to me to give her a beautiful and perfect celebration, and I  heard that too in the words of Saffie’s father as he uttered his promise to make her “the most famous girl in the world”. I completely understand this drive to keep your daughters memory alive, to want to fulfil your child’s dreams even after they have gone. This is, after all, why it was so important to me to deliver the roundabout in our girl’s memory, the roundabout she kept asking about, in her favourite park, forever, I hope, to be known as Phoebe’s Roundabout. So perhaps the parallels were too obvious for me to ignore. I know the circumstances of Phoebe and Saffie’s deaths were very different, but both us and the Roussos family have lost beautiful and vivacious girls full of drive and personality, that much is clear and perhaps this is why I couldn’t steer a diversion on this occasion.

If I peel back the layers further, perhaps it was less about “couldn’t” and more about “didn’t want to” on this occasion. I think I actually wanted and needed to feel pain, to prove to myself that I’m not over this and that I’m still as broken as ever. As my strength has grown and as I have begun to have the odd day without tears, I have also found myself feeling guilty; It’s too soon, I shouldn’t be coping this well, it’s disrespectful to be so hopeful and to enjoy things……… I’ve even caught myself concluding that I can’t have loved her enough….. With these thoughts, note I said thoughts, not feelings, whizzing around my head,  I acknowledge that I didn’t fall into that day’s pothole but rather jumped right into it, in order to prove to myself that the pain of losing Phoebe is still as sharp as ever and that I’m not hard and without the “right” level of emotion and demonstrable grief. This is why upon arriving home and discovering that Ralph wasn’t in that I turned on the TV and decided to download and watch “Diana, Our Mother: Her Life and Legacy”. I actively wanted to tune into other people’s loss to trigger my own feelings in an emotional outpouring, to make sure that they were still there. I knew this would be the effect, the previous week I’d chosen to watch the Will Smith Movie “Collateral Beauty”. This film tells the story of a high-flying ad agency executive who lost his 6 year old daughter to a rare form of cancer. Many didn’t get this film, the reviews were terrible. I got angry with his colleagues as others did in the plot but I also connected on so many levels and it did what I needed it to do; it unlocked the feelings that I have become more and more able to lock away and contain. I needed to just check they were still there, that I wasn’t healed or over it and therefore out of step with how a bereaved mummy should be and it was the same last Wednesday. I had seen a glimpse of my pain there on Facebook in the pain of another  bereaved parent but I had to put it on hold until I got home, where, once alone, I chose to open the door and let it spill out everywhere as I watched and listened to the Princes talking of their mother.

Unsurprising perhaps then that I woke the next morning feeling like my heart might explode out of my chest and unsurprising therefore that I also allowed the other tragic news of that week to stir up my emotions, my energies and positive resolve being depleted  .

Over the past few weeks it was impossible not to be aware of the plight of Charlie Gard and his parents Connie Yates and Chris Gard which reached a tragic turning point at the end of last week on the  Friday with the announcement that Charlie had sadly died following the turning off of his life support. I say turning point rather than conclusion because I know only too well that this is far from the end for Charlie’s parents; they stand at a cross roads on a long and painful road and my heart goes out to them as they figure out how to take steps without their boy. The case has been debated both in the news and in social media resulting in me having to once walk away again if I read their intentions and actions as parents being questioned. That they should be by his bedside, not in the courts. This angered me, the lengths you will go to if there is even the smallest hope of saving your child are endless. How could people question them, judge them?…. It’s all to easy to judge when you have no experience of what you are judging.. For example, the other week I heard a woman in a pub say, when equally tragic Bradley Lowery lost his battle with cancer last month, that going on Facebook to announce his death would be the last thing she would have done…. This  angered me. I screamed out in pain on Facebook the night Phoebe died you see. How dare this woman judge when she had never walked in the painful shoes of a bereaved parent. But I have, I wear these uncomfortable shoes every day and I also wear the shoes of a bereaved parent who lost their child to a rare genetic condition in the shape of LPIN1 deficiency. A rare genetic mutation of which both Ralph and I are both carriers, just like Connie Yates and Chris Gard, who are both carriers of a mutation to the RRM2B gene. And so for this reason I allowed their tragedy to seep into my soul recognising that they too are likely facing the risk of having another child with the same condition as Charlie should this be a road they want to consider. They are younger than us, they may have options like PGD (Pre-implantation genetic Diagnosis) open to them. But none the less it is overwhelming and not quite as simple as some might think. When I was told I was too old for this process, I was hugely disappointed but in reality, even the thought of having another child is difficult. Another child wouldn’t replace Phoebe and won’t replace Charlie. It just isn’t that simple…

By the weekend, I was rung out. I might have proven to myself that my grief remains raw and  just under the surface but I felt terrible, almost like I had an almighty self-inflicted hangover. I was completely exhausted and felt utterly wrung out from the emotional rollercoaster I had taken myself on. I was desperate for some reprieve and respite. Some might say that this is just the way it is after the loss of a child and that we have little or no control over emotions which could fall foul of a trigger and spiral out of control at anytime, but I don’t really subscribe to this, I think I do have more control. Triggers will pop up without warning but I know I jumped into the pit so with this knowledge, I believe I can practise better self-care and choose alternative and more compassionate responses for myself when these inevitable situations occur.  I have decided that I need to become more accepting, in fact even proud of my growing strength. It doesn’t mean that I am a robot or in someway devoid of emotion because I am beginning to function more “normally” and to cope better without her. I need to accept that I don’t have to feel guilty if I get through a day without tears and that I don’t need to have crashes to prove that I loved her more than anything else in the world………. I will always empathise with others in situations of distress having personally experienced tragedy, but it would be more self compassionate to put in place strategies to protect myself from the impact these can have when I’m at my most vulnerable; for example in the airport. I always feel sad in the airport as I’m not going home to our girl. This is therefore the worst time to scroll through news stories online. I’m going to try therefore to read at this time, lose myself in a book. I can try anyway..

It hasn’t just been other people’s pain which has proved a challenge, I have also struggled with and therefore want to be able to cope better with other people’s joy…….

Having lost the most precious thing in my world it can take everything I have to not let feelings of bitterness and envy creep in and eat me up and send me spiralling in a whirl of  bargaining “it’s not fair!”, “what did we do to deserve this?” and “why them and not us, how come they get to be happy?” or “why her? why our beautiful Phoebe?” all of which does nothing  but cause me physical pain and emotional anguish and could potentially isolate me from others should the bitterness spill out in anger. I haven’t let it, and I have tried to be happy for others but it is so difficult and it can gnaw away at my insides. I know anger is never a positive use of energy so I desperately want to find a better way to cope before it becomes horribly destructive. I don’t want to feel the pangs of jealousy in response to the baby bumps a plenty and birth announcements from colleagues or closer to home. I want to be able to send a card like I promised, buy a gift and visit…. But uncomfortably aware and ashamed of bitter feelings beginning to emerge, all I have been able to do is shut off and pretend it’s not happening….. I don’t like feeling like this, I feel rude, so here and now, I ask forgiveness from those I haven’t been able to face or properly acknowledge while I figure this one out and get to a place of acceptance.

I’ve also found it hard to cope with visual documentation of other children’s milestones on social media. The end of the school year inevitably led to a flurry of first day and last day of Reception class photos and there also seems to have been a series of first wobbly tooth pictures too. Notes of love written to mummy and examples of carefully crafted handwriting….. All of these parents have every right to share their joy and pride in their developing children and were Phoebe still here, I have no doubt that I’d being doing the same but it can be so difficult to see. It is so hard to not to dwell on how unfair it is and become bitterly consumed by the fact that they are experiencing what was snatched from us, from her and what we none of us three will never have. These feelings are not helpful. I know that. They will only hurt me in the long run. I need a more helpful and more self compassionate approach, a change of focus.

I think the key may lie in trying to look forwards and on what might be, on what I can do or can have, rather than continually focus on what can never be. This is a road to nowhere and will only drag me down and imprison me in a spiral of negativity which will eventually extinguish the hope I so need to feel. I need to focus all my energies in pursuit of activities and pursuits which lift my spirits and bring me some joy. I ended my difficult week in the gym keen to turn things around with the pursuit of activities and behaviours which lift my spirits and make me feel proud of myself. I followed my workout the following morning with a plod of a run but it didn’t matter, it didn’t matter, because I felt like I was back on course. I ramped up my number of posts on Instagram. I have found this “new to me” medium uplifting. This wasn’t my expectation or intention when I set up my account and linked it to this blog. I did it because it simply isn’t possible to write long reflective pieces every week, I’d be emotionally drained. Writing is therapeutic as it helps me process and work out why I am feeling what I am feeling, but this is not an easy process and I need other diversions. Subjects were building up on my list and I wanted to be able to reach out to others and connect more often or comment more “in the moment” so I decided to try Instagram. But, as well as facilitate a live stream of consiousness, charting the upward and downward trend of my thoughts and feelings, it has become a source of inspiration and motivation….It has become as much a vehicle for positive self talk as it is a dialogue with others although this too has happened.  Strangers have reached out with kind words of encouragement, both online and in my hand as a kind gift of positive affirmation cards landed on my doormat. Thank you. This has all nourished my weary soul and given me a fresh perspective as have the other inspiring accounts which I have found. They motivate me and have shown me an alternative path. Perhaps these people are only presenting their best selves, it doesn’t matter right now, I am choosing to believe that there is another way, that there is light at the end of the tunnel. I know that I feel re-energised once if I maintain this more virtuous circle.

Having read a thought-provoking and inspirational quote credited to Helen Keller at the weekend, I googled for more and found a whole raft of her wise words which felt relevant to me. On Sunday morning as I pulled on my gardening clothes I posted “Keep your face to the sunshine and you cannot see the shadows, it’s what the sunflowers do”. This felt appropriate in light of the days planned activity and with regard to my acknowledgement that I have choices when it comes to navigating this grief journey. It buoyed me, although the day was not without tears, triggered when I raised my head at the bottom of the garden and looked up and away from the sun and thought how Phoebe will never again knock on her window and wave at me from above. I wobbled so that evening looked for further inspiration choosing “Although the world is full of suffering, it is also full of overcoming” to soothe me and to give myself hope that while I felt pretty rubbish right at that moment it would subside and tomorrow was another day.

Perhaps, however the most relevant to me of all the quotes credited to this inspirational woman at this time, is the following “When one door of happiness closes another opens but often we look so long at the closed door that we do not see the one which has been opened for us” as it illustrates the importance of looking forwards. I hope this doesn’t offend anyone else walking this dreadful path after the loss of a child although I fear it might, but for me it is the only path which I can see which could bring me a sense of peace and a chance of joy.

It is incredibly difficult to look forwards and it doesn’t mean I am turning my back on my beautiful girl but there is no sense in banging on a door which has slammed irrevocably shut. It will never open and I cannot spend the rest of my life on my hands and knees exhausted after my attempts to break it down fail over and over again. I believe that I have to try to accept where I am and look for new possibilities, new doors, perhaps look for and appreciate that misunderstood “Collateral Beauty”.  Going forwards or even appreciating what I can in the now isn’t leaving her behind, I wouldn’t be able to do any of this if it weren’t for her, as my memories fuel my determination to respect life by living as she cannot. Phoebe will always be with me wherever I go and whatever I do. This is the awful hand I have been dealt but as other motivational quotes encourage, I am going to do my best to play my cards as well as I possibly can.

Navigating the triggers of other people’s pain and other people’s joy will be an on-going challenge, but at this moment in time I have to believe I can do it. I believe that it is within my power to learn to steer a smoother and more self-compassionate course. I have come a long way already, I am learning about myself daily. I am growing in strength and I have to become comfortable to let it grow further without any incumbent guilt. I just have to.

Wish me well please……?