9. Let's be more 'Rebecca'!

A few years ago, my partner and I had to sit our (then 6 and 8 year old) kids down to tell them that Col, my partner, their dad, had throat cancer. We didn’t know if he would live or die but the odds didn’t look good. We were told, ‘You have to have hope’ by the cancer doctor. Well, that didn’t sound good and the stats weren’t so great either. 

Our lives had just been thrown into turmoil. All the usual thoughts in those circumstances of, ‘Will he die?’, ‘How will I cope?’ were flying around. It felt like a very lonely place to be as we tried to protect each other from our terror and worries, as our own communication (which was usually great) broke down a little. 

That said, we knew we wanted to be open with the kids. We couldn’t change things, and we knew we didn’t want to hide things as this would be confusing for them. So we decided to talk to them in a way that would hopefully give them life skills and build emotional intelligence as they went through something ‘shit’ that life was throwing at us as a family.  

We sat down at dinner and said in (summary) words close to this, ‘Pappa’s (Swedish word for dad as they are part Swedish) not very well. He has something called cancer in his body (They knew about cancer already) He is going to have some treatment for the cancer. The treatment is going to make him feel very poorly.’ To which Oscar, our 6 year old, jumped in and asked, ‘Is he going to die?’…just straight up.  

Chaotic emotions flew round inside us at hearing him saying these very words. We managed to say, ‘We don’t know hon. We have to see what happens with the treatment and how it works on pappa. If the treatment doesn’t work, pappa could die. Yes.’ And then we talked a little about people dying and their pets that had died. With that, Oscar just ‘moved on’ with his day. He’d heard what he needed to hear and got the information he needed to know at that time. 

Molly was different. She went very quiet. When we finished food, she got down from the table and quietly disappeared upstairs. Something was going on in her. I walked upstairs to find her in her room on her bed and as I walked towards her asking how she was, she looked at me and burst into tears. I too burst into tears. And we just cried together as we sat on her bed hugging. 

The reason I’m telling you this story is that there were so many powerful life ‘shout out’ moments in learning for me: 

1. It highlighted so blatantly how different people process and react to things so differently - bad news, illness etc in different ways. Oscar needed to ask direct information and get direct answers - then he had what he needed and could get on with being a little boy. Molly, was less openly direct. She needed time to process it in herself. I needed to explore with her a little. She definitely needed to talk and cry more.

   
   

   It reminded me how important it is when we have these conversations with people with a learning disability that we try and adapt to how people are, how they process information and how they communicate. It may challenge us and it may not turn out as we expected but we need to have this in mind when we support people with a learning disability through difficult moments like change,  illness and death. Is the person more like Oscar, needing direct, short pieces of information that don’t beat around the bush, or are they more like Molly where it shows in their very being, in their emotions, in their behaviours, where they need more time? Or is that person completely different to Molly and Oscar? 

   
   

2. It reminded me of the importance of us being brave in these moments - having these conversations. We don’t know how a person will react and it can be bloody scary. I cannot tell you how much fear I felt at having to have this conversation. I’m just their ‘mamma’- I was not a psychological expert in communicating about death and loss! I felt so much responsibility to get it ‘right’. (Well, quite frankly I’m not sure there is a ‘right’ way but there are different ways and often it’s a bit or trial and error because inevitably we will say things in wrong ways.) But the fact is, that in that moment, I felt a huge responsibility to get it ‘right’ (for them).  

   
   

   Too often people with a learning disability don’t get the chance to have these conversations, to explore how they feel, to go to funerals, to express their loss or the sadness when something devastation or difficult happens.  

    

   As friends, colleagues, neighbours or supporters to people with a learning disability, we need to feel the fear and hold these conversations despite our fear, worry and discomfort. We need to create this important space. Because if we don’t, perhaps no-one will. 

   
   

3. It reminded me of the importance of sometimes leaning into our feelings and allowing ourselves to feel them. And we shouldn’t rush other people through them either.  

   How many times have you heard someone say to someone ‘Cheer up, we don’t want to be sad now do we?’ This drives me crazy! What is this obsession in our society with not crying or not being sad? Crying is known to be a healthy release and way of processing in life, emotions, grief, stress etc, yet so often people try and hide their tears or try and stop others crying. If a person is crying they need to process those feelings. By us saying things like, ‘Cheer up’, we are stopping what their body needs to do - to take care of itself.  

    

   When someone we know is crying, it is hard. We don’t want them to feel upset and sad -that’s our empathy and discomfort. Molly and Oscar taught me that the best thing I can do is to create a loving, safe space for them to feel how they feel. We don’t have to ask loads of questions or say anything outstanding or amazing.  

    

   Just being there with a person is powerful in itself. It says:  

    

   ‘I’m here. I’m with you. I’ve got you. I’m alongside you in this. Be how you need to be. Feel how you need to feel.’ 

   
   

4. The importance of not assuming how someone will react. It’s the same in support work, in research and in everyday life, I think. Even people we know well. We need to be able to sit with the unknowing (and not answer for people). We need to not rush to fill in silences. In difficult situations with unexpected news of death or loss, people are thrown suddenly into a ‘moment’. They need time to process and react in their way. 

   
   

   It reminds me of a group I supported years ago, run by Irene, where people with a learning disability could talk about death and loss. In one session, we used one of the Books Beyond Words books about dying for the group to tell the story of what was happening. We also did some art work.  

    

   It was one person’s first time at the group. A Support Worker said of that person, that the person probably wouldn’t come again as they only came for the artwork. But actually, that person really loved the story telling and wanted to come back for that… clearly quite unexpectedly. We are always learning new things about each other. 

   
   

5. It reminded me how important it is to have someone to talk to. I felt so very alone at a time. I felt hurled into a situation with no time to prep or research the best way forward for my kids, for my family, for my relationship. I could see people panic and not know what to say. I could see their discomfort and I felt I needed to support them! People around me suddenly disappeared or went quiet.   

   
   

   But out of the blue, one new friend, Rebecca, that I didn’t know so well, just called me up, ‘How are you Jo? I haven’t seen you in the playground recently…’ She just put herself out there … to me – someone she didn’t know well. Somehow she could hold space for whatever I said. I never, ever felt judged as I cried, despaired, or joked about needing a drink and having no alcohol at home! 

    

   We all need a ‘Rebecca’ in our lives- whether we have a learning disability or not. Or better still, maybe we can all be a bit more ‘Rebecca’ for the people in our lives - whether its people we support, do research with, work with, live with or hang out with.  

    

   Just bravely being there. Just listening. Just asking. Just talking about difficult moments in life. Just sitting with the silence, not filling in the gaps. Just creating that safe space. 

   
   

   In fact, there’s no ‘just’ to it. It’s super powerful. 

   
   

   So that, I think, is my wish from this blog, is that we all try to be a bit more ‘Rebecca’ for the people in our lives. Because when we do this, people will feel our intention, our love and how much we value them. It will free people to process their thoughts and emotions. And what a gift to give people we care about when they are going through a difficult time. 

   
   

   What’s that Maya Angelou quotation? 

    

   'I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.' 

A few minor notes before I finish: 

Note 1: It wasn’t just because Oscar was little that he wanted information like that. Years later I was rushed to hospital with a brain haemorrhage. The first thing Oscar asked, ‘Is she going to die?’ and when he got his answer (of course we didn’t know) he could carry on processing information and carry on with his day. That’s just Oscar. And Molly too continues to process things inside, needing time. One is not better than the other. They are just different ways.  

Note 2: I could go on for ages about how much more my kids taught me in this one moment. I’ve only captured a few snapshot learning moments.  

Thank you Molly and Oscar (to capture your words below), you rock (and continue to teach me)! 

Note 3: In case people were wondering about Col and what happened to him. He is alive and well. We were so very, very lucky. In a click of finger, our lives could have been very different, but, hey, that is a different blog… 

Written by Jo Giles, Research Assistant at Kingston University London