Dear Orla – life after loss: choosing the right words

Surviving stillbirth - Dear Orla -

Last Monday we heard from clinical psychologist Michelle Tolfrey, whose baby daughter Orla was sadly stillborn, about the birth story. This week, she discusses our need to label everything and how this affects life after loss…

Dear Orla - life after loss: choosing the right words -

Words. Names. Labels. In our society it is a human necessity to be able to name or label something; to make sense of what it is, how we should respond to it and how we fit with or relate to it. It helps us to sort things, to make them ‘tidy’ and to file them in our complex minds. In my home, I love to label things – sit still for too long and you will find yourself with a retro Dymo label on you and filed in the relevant drawer or Kilner jar, a la Pinterest. It helps me to feel in some way in control of life.

Language is something I think about a lot at work. My main tool is the spoken word. As psychologists, we speak and we name things, always in the hope that it will bring about some clarity, understanding and meaning. And through working with inspiring colleagues and clients, I have come to understand that our choice of words can often be make or break in terms of how connected and understood people feel. As such, there are times when I agonise over the choice of words or phrases I use in letters and reports through fear of ostracizing or offending.

The choice of words and labels can be particularly apparent when talking about diagnoses. Where some people feel relieved that they finally have a name or a label to make sense of their experiences, and therefore a way to explain it to others, for many this feels stigmatizing and reductionist. As if their whole life and lived experience can somehow be summed up into just one or two words and that this is now who they are.

When parents lose their child, there isn’t a word to describe them

But what if there is no label? What is there is no way to say in just one or two words what space in the world you occupy? I have recently read many times now that President Ronald Reagan apparently once stated: “when a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them”. I found this really interesting and it left me wondering, would I want a name to describe me as a bereaved parent? Orla is my only child, so if I had another label, would that supersede me being a mother? It would certainly make those awkward encounters and questions of ‘do you have children?’ more manageable, but would it in some way minimise Orla’s existence?

I haven’t had to answer this question yet, but I know that I will with time. I’m sure that having a way to describe myself in one word would help manage the anxiety I feel at just the anticipation of being asked. I suppose I hope that this would be met with a mutual understanding and that it would make the situation manageable for both parties. But would I then get the chance to follow up with precious details about Orla, like how old she was when she was born and how old she would be now?

Choosing the appropriate words to describe what has happened to us can be so difficult. I have only just been able to use the term ‘stillborn’ when talking directly about Orla as it feels so medical and detached. However, I still much prefer to say that she was born asleep. In hospital, it jarred to hear people use the words ‘dead’ or ‘died’ in relation to my baby, as they are two words that should never have to be in the same sentence. ‘Passed away’ has always felt more manageable for me when talking about death, but I’m never sure how well that translates into other languages and cultures (made apparent when trying to explain to our cleaner who is from Bolivia and speaks limited English….although admittedly her English is better than my Spanish). In life after loss, it’s as though suddenly every word matters. Which I guess may be why it can be so hard for other people to know what to say as they too are in this same dilemma.

It’s a minefield. But for now, I think I can live with not having a distinct label or category. I know that I am a special type of mother to a special kind of baby. I am a survivor and a warrior. And I will continue to use 100 words rather than one to describe our journey and the place we now occupy in this world because I know that this helps to keep Orla’s memory alive.

Next Monday, we’ll hear from Michelle Tolfrey about wanting answers – and not being given any…

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The Early Hour is donating to Michelle’s Just Giving page – raising funds for SANDS (the stillbirth and neonatal death charity) – as payment for her articles. If you’d like to donate too, please click here.

Choosing the right words was originally published on Dear Orla on 26 June 2016. It has been republished with permission.