|September 6, 2013||Posted by DiversifYA under Disability and Illness, DiversifYA, Family Life, Mental Illness and Neurodiversity|
DiversifYA can only exist by virtue of all of you, stepping up and answering questions. It’s an awesome and brave thing to do, and I know from experience it’s not easy. Sometimes though, circumstances prevent us from attaching our names to these answers. Family, community, job, stigmas. It makes me incredibly proud of this community that we don’t let that stop us and *still* speak up. So today’s interview will be anonymous. And awesome.
1. How do you identify yourself?
I’m a queer geeky writer. I’m a traveller. I’m British. Ginger. Awkward.
I guess being a carer isn’t something I would usually add to that list. It’s private, and situational, and more about what I do than what I am. Sort of. But it is still part of who I am.
My parents are two of the most loving, intelligent, wonderful people I know. But my dad is a bipolar diabetic and my mum has primary progressive MS, and they both need extra help to function. And for the purposes of this interview that’s what I am. A carer.
2. What did it feel like growing up as a carer?
One summer, my dad broke. He sat on the lawn and cried big ugly tears and I couldn’t stop it. And he looked at me and asked, ‘what am I gonna do?’ and I couldn’t answer. So I hugged him, because it was the only thing I had. He asked me to fix it, whatever it was, and even though I didn’t know how, I told him that we’d fix it together. And everything changed between us.
I was eight.
In some ways, not much was actually different after that. We still picked raspberries from garden all summer, and the pair of us escaped to the New Forest at weekends, where we foraged for mushrooms and climbed trees and pretended we were forest pirates. I cursed his knack for burning toast and he cringed at my eight-year-old slovenliness. We read books. We laughed.
But every so often my dad would stop coping, and instead of reading the next chapter of Alan Garner or McCaffrey, he’d lay sobbing on my floor and we’d try to work out what was wrong, and how to make it better. And I’d worry, because nobody should be that sad.
And then my mum got sick. The first thing I noticed was the food. She stopped remembering how food worked. I learnt to grocery shop and cook for four pretty quickly. Because, honestly, raw potato and bean stew is something you only want to see once. And sugarless cakes are pointless.
After the food, it was other stuff; cleaning and laundry and supervising homework. I learnt a lot of life skills that way. See that something’s not being done? Do it. Someone has to.
3. What are the biggest challenges? Conversely, what are the quirks/perks?
There are two massive interlinked things that I struggle with, even today; burn out, and resentment.
These days, both of their symptoms are so very much worse. They need a lot of help, and mostly, they don’t get it, because systems are stupid and MS is tricky to quantify, and even where there is help, my parents are too unaware or stubborn (usually a bit of both) to ask for it.
I (selfishly, but OMG I had to) moved out a long time ago. I live at the other end of the country. But I’m still the go-to person for everything. Every time my dad panics, every time he gets so low he can’t see a way out, I’m at the end of the phone. Every time Mum falls or gets lonely, or forgets how to boil the kettle, I’m at the end of the phone. And there are times when I have to jump on a train and be there to fix things up as best I can. Mostly, I don’t mind. None of this is their fault, and nobody should ever, ever, ever have to deal with this kind of thing alone.
But sometimes, when they’re extra needy, or I’m trying to juggle work and deadlines and life stuff of my own, I do mind. Cue resentment and guilt and general all-consuming angst: I’m tired, and yes, I’m an adult now, but they were the adults first, and it’s Not. Bloody. Fair.
The thing is, though, especially if you take on a carer’s role quite young, it’s near-impossible to get out of the patterns. You do things because you always have. Because that’s what your relationship is. Because they need you. I reallllly struggle to say no, or to walk away and let them work things out. I hate abandoning them to awful situations, so I’ll always suck it up and deal. I just won’t like it.
There are good parts to all this, though.
I don’t take anything for granted. I’ve watched my mother’s freedom disappear one piece at a time, and I cling to mine like nothing else. I’m lucky. I have the means to do most of the things I’d like to do. And I’m damn well going to make the most of that.
I’m pretty empathetic, most of the time, and being able to relate to people makes life (and writing) so much better.
I can be fairly persuasive. And persistent. When you have to convince a fully-grown adult that a doctor’s appointment really is necessary, and no, they really, really shouldn’t drive, even if they have a license, and screaming at you isn’t going to change that, other arguments are… pleasant. *g*
I can build a bookcase, fix a dripping tap, study like a boss, and I can cook. Man, I can cook. Thank you, world, for all the practice.
4. What do you wish people knew about being a carer?
There’s a spectrum. It’s not all terrible. And if you’re talking young carers, it doesn’t mean the adults aren’t doing any of the caring. It doesn’t (always) equate to abuse or neglect.
We cope. It’s what we do. And we’re proud of it, we don’t always want your help.
But sometimes when we say that we’re okay, we’re not.
The little things, the things that should be easy, should not matter, are often the hardest.
We love our parents/siblings/whoever. Deeply. Being frustrated or angry or resentful or sad does not make this any less true. Ever.
5. What are the biggest cliches/stereotypes you’ve seen?
Carers, and young carers in particular, seem to be rather invisible. People forget that they exist, because it’s so much easier to assume that adults are adults and kids are kids.
But when we are represented, it tends to be working-class, neglected children in unwashed clothes who fall asleep in class and do badly in exams.
What I’d like to see, is less of the awful stuff and more of the love and care and super-strong bond between family members. More people actually coping, or at least having more than one good day a year.
Also note: Anyone can find themselves struggling, not just apathetic jobless single parents. And illness affects more than just one person. And it sucks. But it doesn’t have to always suck.
BONUS: What is your advice for writers writing diverse characters?
Know your characters and their situations. Understand their reactions.
Put yourself in their shoes. How would you feel? What would you do? And then, once you’ve figured that out, what makes their reactions different to your own?