You might have seen an article about how I had to tell my deaf dad he was going to die.
That article focused almost entirely on my frustrations with the NHS and how hard it can be to get a sign language interpreter; as my dad found out for himself as he battled the cancer that eventually killed him.
By default and circumstance, I became my dad’s interpreter during his 10-month treatment at the York Cancer centre while he was being treated.
But what did he think of having me, his own son, interpreting for him? Was it comforting for me to be there and interpret or was it emotionally limiting for him? Was he strong because that was him or did he feel that he had to be strong for me?
If it hadn’t have been me acting as an interpreter or if he wasn’t deaf, what would he have said? How would he have coped? Would it have been different?
I used to think that my dad handled the whole process incredibly well. He was always strong, positive, happy and keeping me focused on the possibility he might get better.
I tried to find the words my dad, Phil, would have been thinking during those dark and difficult days.
‘The last thing I want is for my child is to act as my interpreter.’ Maybe he thought to himself:
‘He is telling me all this stuff and I can see it’s killing him inside. Yeah, I know how to get him back on track. I’ll say ‘Forever positive’ and he will give me a knowing smile.’
‘Forever positive’ was a phrase that we said to each other every single day from when Dad was diagnosed to the day he died. I still use it every day now.
About my presence, what was going through his mind? What were the thoughts that he didn’t share?
‘Where is my choice? How can I even attempt to protect my lad’s feelings?
‘I want to be able to go home. Call the family round and tell them in my own way that the fight against this damn cancer is over. I want to be in control.’
‘But that’s been taken away from me. My son already knows, he’s panicked and contacted the others so now everyone knows. That’s not what I wanted.’
‘I can understand why, but he is taking the lead a bit! He has become my voice and my personal aide, I’m no longer independent. I think I rely on him too much and I don’t want that really. He needs to be with his wife. She’s having another baby soon.’
‘But I can’t tell him, he is so consumed by all this. By the cancer. He has been by my side at every appointment and at every consultation. You know what? I’ve never once had a qualified interpreter since being diagnosed; just my boy.’
‘You know, I’m convinced that they haven’t even tried to even book one either. They shouldn’t be making Matt hear all this and try to interpret it but I don’t think he’d have it any other way.’
‘The thing is though, it really should be me understanding all this first and then telling my kids the news the way I want. I don’t think any hearing people would stand for having their medical information passed to their kids first. I really ought to be protecting Matt from this but what choice have I got?’
I think the control or the ability to manage the way bad news was being given to me and my siblings would have been one of Dad’s biggest regrets. He should have been able to tell us news in the way he wanted to, the way he knew, as a parent, how to tell his own kids. But he was denied that.
‘Don’t make the same mistakes I did.’ I can see him saying.
‘Stand up and complain like mad! Tell the receptionist she is out of order for even contemplating using your child as an interpreter; tell the consultant at the earliest opportunity how it has to be. Tell them if you choose to bring a family member with you, then they are here to support you not the doctors.’
My dad regained some of that control after he was told that there was nothing more that the hospital could do. In the last two weeks of his life he was surrounded by his close family and he was in full control of his faculties. He was back to being a comedy genius and making it clear who was the man of the house.
You know, I used to think that being the only hearing member of a deaf family was a curse. Now I feel learning sign language as my first language lead to the closeness my dad and I experienced during the final months of his life. We spent hour after hour chatting.
I vividly remember the day Dad died. He was waiting for his friend to arrive and he just looked exhausted. I signed our special phrase ‘forever positive’.
‘No more positive’ he replied. It was the first time he didn’t reciprocate.
Then Dad asked my sister get a strong cup of tea and three slices of toast. My sister asked him if he was sure because he normally had a weak tea and two slices of toast. ‘Yes I’m sure’ he signed.
Then he asked me to leave the room. He wanted to be alone. As I left the room, I said ‘forever positive’ one more time. This time it was more of a question to which he smiled and closed his tired eyes.
Dad’s friend Ian arrived as my sister was making the tea and toast so he went straight up to see Dad but was back downstairs in minutes. My dad had waited to have his final laugh and joke with his friend and then his consciousness finally slipped away.
For the next two hours his breath got shallower and shallower until the inevitable end.
It was peaceful. Heart breaking. But peaceful.
It was exactly the way he wanted to go. He was surrounded by his loved ones and at the moment he took his last breath my wife said: ‘Look at his hand, Matt.’
In the last act of devotion to his children, Dad’s right hand was down by his side and giving the American sign for ‘I love you’.
He knew what he was doing. Even in those last few moments, he was in full control. I just wish he had been in control throughout the whole process. Please don’t make the same mistakes we did. Forever positive.
Matt Dixon is a campaigner for the rights of sign language users, a trainee sign language interpreter and a member of the Spit the Dummy and Campaign for BSL Act Campaign Team. You can follow Matt on Twitter @foreverbsl
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