The Rebels

The Rebels - The Unit

"There is no such condition as schizophrenia, but the label is a social fact and the social fact - a political event." R.D Laing

Mental illness – is it merely a new politically correct label describing those that leach from the country and just “need to pull their socks up” and get on with things? Are “these people” by all accounts just weak, apathetic and lazy?

Or, is it an illness well deserving of understanding and patience...?

Growing up as a young carer for a mentally ill mother, allow me to tell you that this is no simple one or the other, sometimes.

"Neurotics complain of their illness, but they make the most of it, and when it comes to talking it away from them they will defend it like a lioness her young." Sigmund Freud

Due to my experiences, I have two very opposing sides to me. The first being the ever empathy filled woman that has absolute understanding and respect for those suffering a mental illness; and another very opposite side that finds herself endlessly frustrated with the yo-yo pill taking that my mother has embarked upon since she was diagnosed. I may sound completely unreasonable when I shamefully admit to the desire on occasion to back-handing my own mother when I realise that she has, yet again, decided to self-diagnose herself as cured and stop taking the necessary medication. Despite, of course, her lack of a relevant PhD or the completion of medical school.

You see, yes, she has a mental illness caused by a chemical imbalance in the brain which is absolutely not her fault. However, this can and has been remedied by medication in the past and is currently - or, I hope it is, at least.

The problem is: getting her to actually take it on a daily basis, permanently. She may not have completed medical school or even have an undergraduate degree but when it comes to eluding medication, my mother may as well have a Masters in it. She could write a bestseller on the subject, amazing really - all self-taught or maybe she just has it naturally wired in there. Her only problem now is that I've lived the book and could quote it page by page. Meaning, she has to be rather inventive in order to escape my intuition these days!

'Rebel: someone who resists authority, control, or convention'

Oxford Dictionary's definition.

Humans are sneaky and rebellious by nature but we are still accountable for all actions taken, the good and the bad and the fact is when she decides that she is “cured” – she is in her balanced mind due to the medication. Things only go unbalanced when she stops. So, you’ll forgive me if I’m being a bit harsh or forth-coming when I say that it is very easy to get frustrated and often, quite angry with her and hold her entirely responsible for the situation when it occurs.

Sometimes, I want to actually scream at her, shake her - whatever it takes to make her realise that there is no quick cure! Call me selfish and ignorant but I get so frustrated, not because I think she is a fool and it is not my problem, but the opposite - it is because this is entirely PERSONAL.

I can no longer detach myself from the situation – she is my mum and I will take care of her. It is me that needs to stand strong when she can't cope. It is me that has to somehow get through to her and convince her to take her medication again, so everything can return to normal. I have been taking care of her, on and off along with my sister, for as long as I can remember.

Sometimes, just sometimes, I wish I could have a ‘normal’ mum, whatever that is. One that is able to take care of us for a change, full time – stupid really, seeing as I’m an adult now and have been for quite some time. Yes, I’m aware that I am being incredibly selfish – I know, but it is a nice thought - sometimes...

However, as I said above – there are two sides to my emotions about this. This article is not all about me and my selfish ‘desire to be mothered’. I can absolutely understand where my mother is coming from and why she stops taking the medication, as much as I may not want to sometimes and as much as I may wish to regress and be taken care of from time to time myself.

Think about it. How horrible it must be to know that you must rely on chemicals for your eternity to keep you – well, you. To know that every day, for the rest of your life, you will have to be medicated in order to undertake simple tasks like going out to the shop, take a bath or interact with friends without long gaps in speech or paranoia or the blank space that exists between you and the rest of the world. Can you image what hell this would be to live? Not even just the not being able to do these things, but the knowledge of your inability to do these things without the presence of a pill to be taken every day. And, possibly even more soul destroying would be knowing that your six and eight year old daughters can do a better job of taking care of each other, the house and you, than you can, if you are not medicated. It goes against the natural order of a family and it would tear a mother apart. Not just having to watch your daughters suffer watching you suffer within yourself - but being fully aware that you are the cause and that you are helpless to do anything about it.

For me, that would be torture! I can't imagine the guilt she feels. The wish, the hope and naive determination to make things better. So, I might well do the same in her situation – come off the tablets to prove to everyone and most of all, myself that I’m ‘normal’. That I’m not as crazy as everyone thinks I am and that maybe, just maybe, I can do it - this time.

In a reverse of roles, maybe I would be the one putting the tears on my daughters’ faces as they watch my deterioration and I would be the one that feels like the rest of my family reject/misunderstand me – and I would be the one in constant battle with my own mind... With my own self.

Scary thought isn’t it? Not just hell on earth, but an internal and eternal purgatory.

I can absolutely vouch for the fact that she is and always has been an excellent mother when well. It’s just a bit of a lucky dip sometimes. I know immediately when I call, her entire voice changes when she is ill. She has this vulnerable, childlike voice that adorns the ears upon answering. This may seem like nothing but when you know the real her, you just can't believe that this voice and demeanour is coming from the same person. The rest of the time she has a very strong but loving manner in any conversation. Everything she gives out is different, that’s why I don’t really see her as a motherly figure when she's ill because I know it is time for my sister and I to step in and take care of her again. She is vulnerable and she does need help. The fact is, there is no one else but even if there were - I would still do it, as many times as she needs me and as long as I am able.

Another rebel of disability I know rather well is my beautiful big sister. Type 1 diabetic, recently in uncontrollable frustration, saying to my mum (and quite rightly so):

“All you have to do is take one tablet a day! One stupid tablet and you’ll be fine! I have to inject myself with insulin four times a day to stay alive and take blood tests three times a day to check my levels! If I could, by some miracle, get the PRIVILAGE of only relying on something so simple, painless and infrequent – believe me I’d be shouting ‘where do I sign up?’ if there were even the tiniest chance of such a luxury but there's not so count your blessings!”.

Just like my mother, my sister used to fight her illness. She was diagnosed at age 7 with type 1 diabetes. She tested and stretched the boundaries are far as she could. When I say that I mean as literally as far as life would let her without actually dying.

I remember the seemingly harmless first blooms of her rebellion. I’d always swap pillows with her and stop her getting caught with all the sweetie wrappers she would have stuffed in her pillowcase.

Was I really doing her a favour? Probably not – but I was young and agreed that it was mighty unfair to rarely be allowed to eat chocolate and the likes. As her partner in sweetie gorging crimes, I was mildly biased, I’ll admit.

As she got older, into her teens, her rebel techniques evolved and elaborated. I remember how she would try and fight it. She would miss injections and not eat correctly. Too many of her hypoglycaemic fits that are literally etched into my mind. I literally sat on her on too many occasions to stuff the ‘hypo stop’ down her throat. I remember chasing her round the street of our small town when she took a fit on the way to school. She didn’t get far; I managed to get some people to help me hold her down. She wouldn’t take any food or sugary drinks from anyone but me. My sister and I have an innate connection and even when she is delirious in a fit and is recognising no one, somehow my voice and reason gets through to her just in time. I thank God for this; otherwise I may not have a sister to write about in the present tense.

The worst etching in my mind is one I am unable to erase. I’ll never forget how her olive skin looked so deathly grey and her arms and hands had the worst puncture wounds from drips and blood tests, while she lay on a hospital bed having been saved from within 2 hours of her life. How much I cried when I saw her and blamed myself for not being there, not getting to her sooner - not being there to save her when she needed me, so she wouldn't have to be in this bed with tubes and wires everywhere.

The funny thing is, before she moved out – it was her that took most of the work load with mum and quite possibly still does. I think that’s why we are so close, we have been each other’s’ pillars growing up. I guess she’s like my semi-mother, full sister and most of all – my best friend, all wrapped up into one beautiful package. She literally taught me everything I know – how to cycle, swim, wrap presents for Christmas -, actually everything.

I love my mum and my sister so much and if I could take their disabilities away - I would, in an instant. They cannot be weak or lazy – all they do is fight, daily. The truth is that I am the weakest of our family unit. I have not been tested in the ways that they have. I look up to both these women and admire their sheer strength for what they live with day in and day out. It’s not about who deals with more or how it’s done, it’s about unity. We are a family unit, regardless of how quirky, abnormally frustrating or self-destructively rebellious we may be – we are one, different – yet in many ways the same and I doubt that if in battle with what they have been, that I would stand even half a chance of winning or rather accepting like they have. Would you?

Comments 2 comments

Pollyannalana profile image

Pollyannalana 5 years ago from US

My mother had Alzheimer's but I was her only helper since I could walk so I understand and I know it is easy to get mad sometimes and I would and then be so ashamed I felt like bawling. I lost my mom in June and would give anything to have her back in almost any way unless it would cause her pain. Glad to find you,


gracefaith profile image

gracefaith 5 years ago from United Kingdom

I didn't even notice this hub till I took a look at your page today. This is awesome! Really deep and thoughtful, and must have taken a lot of soul searching and personal frankness to write.

Awesome. Love it.

God bless :)

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