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Everyone has the capacity to care for something or someone; it is part of our human makeup. Whether everyone has the capacity to be a caretaker, however, is a different matter entirely. (Just to clear up any confusion – I am not referring to a buildings maintenance person, but rather the provider of care to a loved one, day in and day out. I just prefer caretaker to carer, the latter somehow sounding so clinical.)

Is SORRY really the hardest word?

Something I have always been acutely aware of, is how any flare-up affects those around me. I have driven my mum close to distraction over the years, with the number of times I’ve told her: ‘I’m really sorry, mummy’ as though landing in hospital via A and E at 3am was my chosen course of action. Nowadays, it’s Lovelyman whom I drive to distraction with my apologies. In fact, we even have a sorry tin in the kitchen that I have to pay into every time I make a pointless apology. Then every so often, we open up the tin and pay the contents into our holiday savings account. (I think secretly Lovelyman hopes I’ll always have this habit, as ot makes the prospect of regular holidays more likely.)

Once upon a time…

I will never forget one particular episode, I was in my mid-twenties and temporarily living back at mum and dad’s while I completed a maternity cover teaching Drama at Leeds Girls’ High School. I came home from a rehearsal for my colleague and my chosen Winter show, Les Miserables, around 7pm one evening in November. I had been climbing the walls in pain all day, but had just got on with things, as I do. Once I was home, I took the mask off and told mum I was going to lie down for a bit before I ate any dinner, so she and dad should eat without me.

I am not sure what metaphor comes above climbing the walls to express the pain I was feeling that night, but the moment I lay down and tried to relax; as soon as I didn’t have the distraction of having to be Miss Gordon and be in charge, the pain intensified one hundred-fold. Within about half an hour, I had conceded to mum that it was probably time to visit our least favourite place: the A and E department at Jimmy’s.

Worse for the supporters

I’m not going to walk you through the events that followed, as I see no need. Suffice it to say, it was the middle of the night before I had been admitted and processed onto a ward and I was in the operating theatre two days later for emergency surgery which saved my life. The relevant issue here, is that mum was due to have an Ofsted inspection at her school in Farnley, beginning the very next day. All I kept thinking, as I lay in the hospital bed, was: ‘Maybe I could have waited another day. Mum doesn’t need this on top of everything else. Perhaps I’m fussing over nothing. It just isn’t fair on her.’

As stupid as it may sound, I have always thought that my illness is worse for those who love me than it is for me. Don’t get me wrong, it is a bitch of a disease. It’s just that I have lived a lifetime with it, so I know what I can cope with and what I can make my body recover from. When things are bad, I just have to get on with it, because there is no other way I know. Everyone else, however, has to watch me in chronic excruciating pain, or see me slimming down to the point of wasting away. The only thing they can do, is look on from the side-lines, feeling helpless and powerless in the face of the Crohn’s demon.

From my perspective, these contributions are in no way without purpose. It has always been the love, support and care from my nearest and dearest that has pulled me through the tough periods. Of course, there have been times where it’s been hard, and I haven’t known how to get myself through, but the hand-holding from my sisters, my mum, my auntie, my cousins, certain friends and of course in latter years, from Lovelyman, has given me the strength I need.

Expecting an inspection

So, back to the night before Ofsted. Mum stayed with me until around 4am, by which point I was on a ward and we had some idea of the plan of action for the following day. As she sat by my trolley, we made her lesson plans, accepting that they would be written less neatly than they might otherwise. Mum always liked me to help her with planning for formal observations, as I understood the terminology to use and the way to tackle a plan to tick the right boxes in terms of modern expectations and criteria for learning.

Things had been different when mum had done her teacher training, so although she was (and still is) a brilliant languages teacher, she was never confident in her ability to make an official plan. I kept telling her how sorry I was. She kept crying and telling me how sorry she was. Then finally we got on with it.

Keeping priorities in order

Mum’s attitude was amazing. I can distinctly remember her saying: ‘Do you really think I care what some inspector thinks of my teaching ability, while my baby girl is lying in a hospital bed? The inspection will come and go. I may get watched, I may not. I may be deemed merely satisfactory. But if that’s the case, and I’m satisfactory under these circumstances, I think I will have done outstandingly well!’

She was right, of course, but I still felt the pain of making something even more stressful for her than it needed to be.

Choice Vs Duty – the big fight

In more recent years, with Lovelyman, I have started to understand a little more about the fact that the people who love me choose to support and be there for me. They don’t have to. There is no obligation to stand by me when I am ill. In fact, if there were, my relationship status would currently look very different, as the two ex-boyfriends (who shall remain nameless) that fled the scene when I was admitted to hospital, would have felt duty-bound to stay. What ugly relationships either one of those would have turned out to be.

I can’t even imagine how it would feel to share my life with someone who felt they had to care. The very nature of being a caretaker is to be concerned for the recipient, to worry about them, to protect and provide for them. How could one do any of those things for long, if the impulse to care had been born out of duty rather than affection?

I think the only duty of care we have (parental responsibilities not withstanding) is to ourselves. It has taken me a lifetime so far, and I’m still only on the beginners’ book, but a year or so ago, I finally came round to the notion that if I don’t care for myself, I make it impossible for anyone else to care about me. If I refuse to believe or accept that I need or deserve support, I will never be inclined to let anyone in. It’s true that I still prioritise the needs of others over my own, but these days I do invest time and energy into safeguarding my own well-being. I’d be no use to Lovelyman (or anyone else for that matter) if I ceased to be here, so I have to put my mind to sticking around. That involves caretaking.

Love trumps all

If there is one thing I have learnt in the past half-decade, it’s that when you love someone, the decision to care isn’t actually even a choice. With love at the heart of the relationship, to care is instinctive. It comes as second nature to want to be there in the other party’s hour of need, even when there is little or nothing you can actually do. I have grown aware of this whilst supporting Lovelyman through depression. So you see, these days, we are each other’s caretaker.

That was actually how I became able to balance out the guilt I used to feel when he helped me through something. In the early days, I found it incredibly difficult to let him in fully. This was no reflection on him at all. You have to keep in mind, the fact that only two years prior to meeting him, I had eventually learnt to ask my mum for help. That puts into context just how much of a challenge it was for me.

Caretaking is a two-way street

Gradually I began to understand when he said it was selfish of me to offer unlimited care and support to him, but not allow him to do the same for me. I would laugh to begin with, thinking he was making a joke; why would he so desperately want to see the uncensored picture of my disease? Surely he would do a runner just as soon as I opened the door, exactly like the ones before him had done. Suddenly the penny dropped. I don’t remember why or how, but I finally understood that it was his right to care for me, just like it was mine to care for him. It was something he wanted to do, and I was denying him of that right.

We each have our own crosses to bear, as most people do. Sharing a life with one another, means we can each help with the carrying from time to time, making it that bit more bearable and slightly less of a burden.

So next time someone wants to help you through something difficult, a friend, partner or family member, think twice before saying ‘No!’ and instead of slamming the door in their face and leaving them out in the cold, let them stand by you. That’s their right as someone who loves you, after all.

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