Sunday Thought July 26, 2015: Two Perspectives, One Half of the Same Whole

At first for today’s Sunday Thought I was going to choose one or the other of the pictures below. Both appeared on my Facebook timeline this week, and summed up perfectly my feelings.

After a while, I realised I couldn’t choose between them because they are two halves of the same whole – so I chose both:

For anyone who thinks that grief has a time limit, or that you ‘move on’ from the death of your child. There is a Hugo-shaped hole in my heart that will always remain. I feel the ache from that hole every day, I feel the pain of the void his absence has left in our lives. I feel the frustration when people don’t know what to say for the best, or do not mention Hugo.

But – oh, I feel such a proud rush of love when people do mention Hugo. When they admire him for the gorgeous, feisty baby he was. When they observe the work that has been done in his memory.

That is because Hugo’s Legacy comes from that pain, that void. As Angela Miller says, the love that oozes from it gives me the power to use my experiences to help others, to make others sit up and listen, to challenge.

To change the world.

This is something I have difficulty with.

Since Hugo died I have discovered the very best of people: people I knew before, some I have met since. Such kindness, empathy, warmth.

Through my blog I have made the most beautiful friendships. Some are fellow loss mamas, others are not. We share in common a passion for sharing with others our feelings and experiences through words, a determination to give comfort to others, reassure them they are not alone.

Through social media I have made the most wonderful friendships. Professionals from all fields. Kind, compassionate, determined people willing to listen and take account. People willing to help me get involved, use my skills, collaborate to make a difference.

Through my blog and social media I have been given fantastic opportunities. Opportunities to get dressed up, have fun, be me; opportunities I never thought I would have.

Opportunities I never thought I would pursue, or do: speaking in front of large audiences, and with a clear voice too. The power of that love for Hugo gives me the strength.

Many beautiful moments.

All opportunities that came because Hugo died. Yes, these opportunities have come as a result of a lot of hard work, but the motivation for the effort comes back to the same reason.

Friendships, relationships, opportunities. But no son. No offence, but there are no prizes for guessing which I would prefer.

While I have a better sense of comfort with the opportunities I have been offered in the past year, I doubt it will ever sit well with me.

I would give it all back to be another mummy with the everyday trials and tribulations of caring for an energetic, willful 13 month old little boy. Who knows what our lives would have looked like in reality, but it would have been full of beautiful moments. Beautiful moments of a different sort. The wonderful moments of motherhood, the frustrating moments.

But what is done cannot be undone.

The way forward is to move forward. Reflect on the beautiful moments I had during those 35 precious days with my beautiful boy. Wish for more, so many more; no amount of time can ever be enough.

Hold on to those beautiful moments, and look to the future. Forging more wonderful friendships, generating more opportunities, creating more beautiful moments.

Hugo will always be a part of them.

Another Year Older – And I Am Glad

It’s my birthday tomorrow, another year older.

And I’m glad.

I don’t have to go to work; I have a lovely day planned. Cards have already arrived, yet to be opened; and if I am lucky I may even get some gifts.

But it is not for those reasons I am glad it’s my birthday tomorrow: I am glad because I have lived another year, and I am growing older.

I am not going to pretend to be 21 again. Instead, I’m proud to be just two years shy of the big 4-0.

Why this gratitude and pride to be growing older?

Because it is a privilege, a gift denied to so many. An occasion to celebrate.

My last birthday felt like it was just another day: the pain of Hugo’s death still raw, I did not feel like celebrating, nor did I feel like I had anything worth celebrating. My son had died in my arms just a couple of months previously; my pregnancy had ended prematurely in a very traumatic fashion; my life had gone so very awry.

Last year, I felt incapable of feeling happy, or even that I should ever allow myself to feel joy.

Fast forward a year, and some things have shifted. My heart remains broken, the trauma remains, my life still has gone awry. But those things now feel different, and I have a different perception of life.

This year, I feel more capable of feeling happy, and that I am allowed to feel joy. Indeed, I need to feel joy – and I find it in the small things like nature, the seaside, a cuddle.

It’s an irony of life that when as children we are eager to be older, to be an adult with responsibilities and to make our own decisions. Yet when we are an adult we wish we could liberate ourselves from those wished-for responsibilities, slow down the clock against ageing.

A decade ago, I was dreading my 30th birthday. It felt so old! Of course, when I reached the milestone I felt no different. In fact, if anything there are ways in which my thirties have been my best decade from the point of view that I am comfortable in my own skin, feel better able to be myself, and I have a direction in life. I wouldn’t like to repeat my twenties (and my teens? Don’t go there), even considering the benefits of a body that has not been ravaged by ten or more years of ageing….and life.

And life is what is all about, isn’t it?

Yes I have grey roots. I visit my hairdresser every two months to get them covered up and to be honest, they start being visible again after two to three weeks – I don’t stress about it.

I have wrinkles around my eyes, despite using eye cream. Again, not worth worrying about: they are a sign of ageing – and of laughter and tears.

Those tears have helped me find a balance in life:

I don’t spend time worrying about what I can’t change – with myself, and with others.

I don’t get involved in gossip, or other people’s dramas.

I recognise that I am me, I am enough.

The balance helps me find more time for laughter. Laughing loudly, not worrying what others think of me.

Instead of criticising what I see in the mirror, I reflect that I am fortunate to have what I do. Instead of wasting time worrying about things that I can’t change, I try to make the most of what I have.

I know life is too short to not indulge in a little of what I fancy – we do not know what is going to happen tomorrow. That said, while tomorrows are not guaranteed I strive towards achieving a healthy balance to make sure I can enjoy the tomorrows I am blessed to receive.

And tomorrows are what birthdays are all about. The traditional salutation for birthdays is “Many happy returns of the day”.

I hope my birthdays return many more times in the coming years and decades.

I hope I have to visit my hairdresser more regularly to cover my ever-increasing grey roots, and that I have even more lines around my eyes from laughter. I cannot say I hope to not add to those lines through tears, because that is something I cannot control.

Another year older tomorrow, and I am glad.

I hope for many happy returns of the day.

Sunday Thought July 18, 2015: Don’t Wait for a Life-Changing Event To Change You

There were many ideas for today’s Sunday Thought floating around my head this morning, each of them calling “Pick me! Pick me!”

But none of them grabbed me.

You see, I try to always write from the heart, rather than from a sense of obligation that I must write something.

Then serendipity struck – I spotted this tweet bearing this fab graphic (thanks Gill!):

Life experiences can jolt us out of the 98% mindset. 👀
The 2% mindset. Via @helenbevan pic.twitter.com/1R65NOkjQ5 pic.twitter.com/gRXhjT6cxf

— Gill Phillips (@WhoseShoes) July 18, 2015

Now it’s the sentiment that is important here, not the exact statistics. There is no citation to explain where the figures are from, nor who did the research. It doesn’t really matter.

What does matter is that we can all recognise the disparity between the number of people we know who live in the safe, cosy comfort zone and those who are getting the most out of their lives.

There are probably as many reasons for staying in the comfort zone as there are motivational quotes on social media (clue: lots). Those reasons might include something as understandable as staying in a job you don’t like because it suits your and your family’s current needs, and pays the bills; or simply because it’s just not possible to fly to Mars yet.

In seriousness, though, we need to be mindful of what are reasons for staying in the comfort zone – and tell them apart from excuses.

Excuses are hurdles you put in your own way. Hurdles that stop you following your dreams, embracing the unknown, exploring new things because you’re worried about what others might think, you’re scared of rejection or failure, or it’s just easier to not bother.

It’s a sweeping generalisation, but those on the outside of the circle tend to have in common a life-changing experience. Something that has stopped them in their tracks, made them realise tomorrow is not guaranteed.

Something that made them realise that rejection and failure are not the worst things in the world (and that not trying – regrets – are worse).

It doesn’t mean that the people on the outside of the circle are heartless, unfeeling narcissists. Quite the contrary: I would argue a life-changing experience makes us more feeling, empathetic, caring, and kind.

The difference is the life-changing experience has helped us put life in perspective, identify what is important.

The trouble with life-changing events is that they’re usually not fun. The experience may have involved you losing someone you love, or a very real threat to your own life. They are definitely not to be recommended: the emotional, psychological and physical effects endure months, years later (I still have panic attacks about my own time in hospital, and about Hugo’s death as well as a number of related things. It’s exhausting.)

So what I would like you to think about this Sunday is: are you sitting comfortably in your comfort zone? Would you like to do something about moving out of it? It doesn’t mean transforming your whole life – it’s not always feasible. But there’s usually at least one thing we can change about our lives to turn us from getting by, playing it safe, settling for less to living life without limits, going for your dreams, getting the most out of your life.

Stop procrastinating.

Go. Reflect. Make a list. Talk to your friends and family. Whatever works for you.

Just do it.

And don’t wait for a life-changing event to change you.

 

In Appreciation of All That Is Good

A post in appreciation of the positive things that have happened this week:

– Lazy day on Monday.

Self-care time on the sofa with my Kindle

The reason for the lazy day wasn’t so good: a very low mood, unsure of what to do with myself. Fortunately Monday was my no-work day this week so I was able to do some self-care. I read my book: some fiction on my Kindle, and the amazing Flourish Handbook by Cheryl Rickman, which contains these words of wisdom I thought you, dear readers might appreciate too:

 

I also settled down to watch a film I had wanted to watch for a long time, the classic All The President’s Men. Which leads me to my next point:

– Google!

I am old enough to remember life before Google and social media, but watching All The President’s Men gave me a reminder of how much we now take this technology for granted, and how quickly we forget life before having so much information at our fingertips.

If you haven’t seen the film, Robert Redford and Dustin Hoffman play the Washington Post reporters who uncover the Watergate scandal of 1972 that led to the resignation of President Nixon in 1974. They hunt for evidence, leads and sources using telephone books, and have assistants poring through clippings files for sources’ backgrounds. So much legwork that could be done today in a matter of minutes.

(There is another point to appreciate: such vibrant newsrooms for print media are rare, sadly, with the growth of online news).

– My work (‘proper job’) and my colleagues

My dread of returning to work made me feel incredibly anxious, but thankfully so far the anticipation was much worse than the reality. I call it my ‘proper job’ because #HugosLegacy and #MatExp are like jobs in themselves, but the ‘proper job’ is the one that pays the bills!

I feel very fortunate working on patient experience projects – my love, my passion – and to be making a difference as part of my job. A privilege. I am also privileged to work with wonderful, caring people who love me for being myself.

A meeting with the wonderful Kath Evans yesterday was thoroughly appreciated, too. I really enjoyed the opportunity to chat in person, and left bouncing with positivity and ideas I can’t wait to tell my colleagues about – and get in to action at work.

Kath and me

– #HugosLegacy and #MatExp

Hugo’s Legacy grows more and more by the day. Wednesday brought a trip to London to attend a neonatal clinical outcomes meeting as a parent representative: I was pleased to make a positive contribution, and for that contribution to be appreciated.

This week I received a number of emails and social media messages from readers saying how much my writing had touched them, or helped them in their own grief journey. Why We Need To Reconsider How We Engage With Bereaved People, and Moving Forward, Not Moving On seem to have been particularly resonant. To know that my writing – and therefore Hugo’s Legacy – is appreciated and having an impact is wonderful.

To date, #HugosLegacy has had nearly 100,000 impressions on Twitter (‘impressions’ means that tweets bearing that hashtag have been delivered to that number of timelines), which means (in combination with trending on Hugo’s first birthday in February) the message is getting out there.

#MatExp is growing all the time, too – to date #MatExp tweets have had more than 152 million – yes, million! – impressions, and it was trending this week, too. It’s amazing – I am so proud to be involved. From the feedback we are getting from many sources it seems that health professionals and users alike are appreciating the value of our grassroots, JFDI (just effing do it!) campaign.

A very kind friend sent me some star-shaped buttons because she thought I would like them – greatly appreciated!

– Another year older next week

Birthdays don’t hold the same level of excited anticipation as birthdays as when I was a child. Last year’s birthday – the first after Hugo – was kind of just another day, I didn’t have the heart to celebrate. This year, I am going to try to make more of an effort for no other reason than to appreciate the fact I have lived another year, and that I appreciate the value of growing another year older.

What have you appreciated this week?

 

Moving Forward, Not Moving On

Moving forward. Moving on.

These terms sound pretty similar, but they are different, very different – and the distinction in respect to living with grief is crucial.

‘Moving on’ implies putting something behind you, letting something go. The effort of trying to move on from a relationship that has ended, especially one that has ended acrimoniously.

It seems that ‘moving on’ has positive connotations. Moving on means you are being strong, courageous, putting the negative stuff behind you and facing the future with a positive outlook and a bright smile.

Many bereaved become frustrated with the notion that we should ‘move on’. Observations such as in this recent published research bearing the headline that “two years, one month and four days is the time it takes to feel better following bereavement” is incredibly unhelpful, implying that there is some kind of time limit on grief.

And what does ‘better’ mean, anyway?

That you’re better than you were in the raw early days? As in better able to function as a human being once the shock has worn off.

That your behaviour is ‘better’ – or more favourable – than the earlier days? This is often more about others wanting to be able to take away your pain – well meant but futile – as well as about other people’s discomfort with responding to your pain. Grief can make the bereaved rather ill-tempered and unreliable for various reasons. We don’t like that behaviour either but we have little choice but to find a way to live with it.

That you’re ok now? Life carrying on as normal. Phew, that’s over, as you were!

‘Better’ is such a subjective term, grief such a personal journey that is different for everyone its use in such an article is pointless.

(The article is actually more helpful than the headline implies, arguing the case for more bereavement support and for people in general to feel more comfortable talking about death, but which do people remember more? The hyperbolic headline, or the boring old facts in the article?)

Perceived time limits on grief can lead to comments such as “Ooh, she never got over the loss of [child, spouse, parent etc]”.

Well, the truth is you don’t. Perhaps some people might be better at hiding their pain, and sorrow. They might put it away in a little box inside their mind, but just because it is not talked about, it does not mean it has gone away.

I love this quote from the wonderful Megan Devine of Refuge in Grief. She organises the invaluable Writing Your Grief course I did a few months ago. She hits the nail right on the head.

‘Moving on’ from losing Hugo has never been my goal. Hugo is my child. I loved him for every second of his life, and I shall love him for every remaining second of my life.

There is no moving on from that.

For the first few months, my priority was survival. There were times when I felt even simple survival was beyond my grasp, such was the pain that I feared would never, ever end.

I wanted to find a way to move forward with my life. To incorporate Hugo in to my every day life in spirit, as I would have incorporated Hugo in to my life as the mother of a living baby.

It is why I work so hard on Hugo’s legacy. I am connected to him every moment of every day, I know, whether or not Hugo’s legacy exists.

I do not need to prove my love for Hugo, but making a difference for others is my way of carrying my love for him.

It gives his life and mine meaning.

Gradually, I have learnt to feel less guilty about feeling happy, or doing something just for me. A smile on my face does not mean I feel ‘better’. I am all too aware that a bad day or a trigger is always just around the corner, and I have an armoury of self-care tactics to try and manage them.

The image below, from Tonkin’s Model of Grief is a succinct representation about moving forward with grief.

Image shared by the Grief Geek on Twitter

The top row of jars on the top represents the popular view that over time, grief shrinks, becomes less overwhelming, takes up less space in our lives.

The bottom row shows the reality: that grief stays more or less the same over time. The shape of grief – the way it looks from the outside – may change a bit, but ultimately it’s the same size. Grief remains the same even as our world after bereavement grows larger.

To sum up, the diagram is a brilliant visual way of demonstrating that we don’t ‘get over’ or ‘move on’ from the loss of a loved one. Instead, we find a way of carrying the loss with us, living with our grief, dealing with our triggers – of moving forward with our lives.

‘Moving forward’ is a phrase I prefer to ‘new normal’. What is ‘normal’ anyway? Life evolves, ebbs, flows. It is not that you move from one ‘normal’ to another ‘normal’ and stay there.

‘Moving forward’ requires resilience. Resilience is the understanding (learnt the hard way) that life will not always go your way, that crappy stuff will happen to you and to the ones you love, but finding ways to not let it keep you down. Finding ways to keep you moving forward.

My cheeky Hugo