Sometimes Forever Is Just A Second

Throughout my life, in several different capacities (from au pair, to mentor, and most recently to teaching assistant), I have been lucky enough to work with children.  And, despite the snot, sweat, and tears, I genuinely do consider myself very lucky. For varying lengths of time, I’ve been granted the precious gift of access to the day to day lives of some truly wonderful little beings. They’ve made me laugh. They’ve taught me lessons about the simple requirements of life. They’ve exposed the ridiculousness of fears that come with age (fear of the unknown, and of embarrassment costs us a lot – imagination, humour, compassion, self-belief…). And they’ve challenged the crazy lies this world teaches us (never have I met a more enthusiastic feminist than in a 6 year old). They also exhausted me, made me lose my voice, and ensured I never serve a child cereal ever again (how is it possible to make so much mess with milk and a box of cereal?!) – but at the end of the day, there’s no use crying over spilled milk. 

Call it a breath of fresh air, or survive it with plenty of deep breaths, spending your days with children teaches you some very important lessons – ones it pays not to lose as we grow older. 

Here are 12 things I think we could all hold a little closer: 

As prime minister of New Zealand, Jacinda Ardern is one of the most powerful people in the world. As prime minister of New Zealand, knee deep in the aftermath of Friday’s horrific terrorist attack, all eyes, and ears, are on her. Since the devastating, brutal, barbaric attack on Christchurch, she has stood at the centre, not only of a media influx, but of a community. Facing the most devastating attack of its modern history, Ardern commands a country that has been left shell-shocked and heart broken. She liaises with, leads, and sets the tone for a world in mourning. She cries, and hugs, and grieves; she is, above all else, unapologetically human. She is everything that leadership should be, and more. She is everything that leadership too often forgets.

Jacinda Ardern makes me proud to be female, but more than that, in the face of such human atrocity, where hatred, terror, and disgust are the intended shrapnel, she makes me proud to be human. She fights fear-mongering hatred with love and kindness. She shows that alongside, despite, and in direct response to the most devastating act of brutality, lies community, acceptance, and humanity in the purest form. Not only does she show it, she encourages it, demands it from her country without dictating. She leads by example, by empathy, by realism, and by unity. She is the people of Christchurch – she is not above them. She is not merely a figurehead, she is with them, beside them. 

I will not claim to know the ins and outs of New Zealand’s political climate, in fact, I know next to nothing, and that is kind of my point. Right now, politics and political discourse are redundant – this platform is not being used to further political agenda, or enter political debates. They cannot save us, they cannot comfort, and, unlike those suffering, politics can wait. Similarly, it would be wrong, and I think Ardern would agree, to focus solely on her. For she may be at the heart of New Zealand, the voice the rest of the world hears, but she is not one voice. She is speaking on behalf of a nation, a nation that also speaks for itself: the kindness, companionship, and forgiveness that have been seen reaches beyond language, governance, and religion. She knows, acknowledges, and encourages this on a fundamental human level, devoid of politics, regardless of gender. That is true leadership, and the fact that it is so very evident on a national scale is testimony to just that. “They are us,” and Ardern is her country. 

And, as a sure reminder of her effectiveness, the reality of her position, within just 48hrs, Ardern vowed to tighten gun laws – determined to do everything in her power to reinstate New Zealand as a country of safety. Level-headed, efficient, proactive, and determined, Ardern combines potential with emotion, appreciating the fact that power and laws mean nothing without empathy. She has spoken with dignity, respect, and resolve – handling media and acts of governance with unquestionable necessity. However, it is in the less requisite professional demands that Ardern truly speaks. The compassion, sadness, and genuine humanity seen in her eyes; the hugs she gives to those whose pain she genuinely shares – this is what makes her a truly exceptional leader. 

I am reluctant to refer to Ardern as a mother, or even as a woman, for although she is both, it is her humanity that speaks first and foremost. Ardern is not the leader she is because she is female. Similarly, she is not the leader she is despite being female. To suggest either, or any variation, is to undermine, and diminish her successful leadership – it is to reinstate feminist narratives into the human values that run deeper than any, and every, label. Ardern’s leadership is people-centred, rather than profit-centred; her main focus is on the victims, rather than the perpetrator. She knows that her place, her need, is not in ensuring significant punishment, but in consoling, co-being, with those who have been tragically, undeservedly, beyond imaginably, punished.  Perhaps she trusts her systems enough to know that justice will be brought in time, and perhaps she knows, as only instinct and raw humanity knows, that both love, and human suffering, know nothing of time, or system. She’s leading a country through the most horrific of realities, and yet maintaining resolve, not because she has learned to public speak, nor because of the title she finds herself owning, but because she is, still, only human. 

Ardern is fiercely protective, knows the power of words, and is actively demonstrating that compassion and humanity trumps all (read into that exactly what you will). She is a figure to be reckoned with, and she’s showing that strength comes in all shapes and sizes, beyond and above laws, regulations, labels, and difference. Her greatest strength is, without doubt, in that she is still human, and she’s using it to guide, console, and lead a nation. And yes, that may be her job, but nonetheless, Ardern is a shining example of exactly what terrorism fears most. 

I’m a day late. 

I’m a day late. A week late. A month late. A year and a lifetime late. 

(I’m never late. I’m always excruciatingly, reliably early. Always.)

Apart from when it comes to sorting out my mental health. In terms of getting my life together, I’m very very late for a very very important date. 

Last night, I lay in bed and contemplated my lateness and the fact that, just like last year, I had “missed” World Mental Health Day; I’d “failed” to publish a blog post. I thought about the irony of the fact that I missed WMHD because of my shit mental health. And I thought about the irony of the fact that my whole experience of trying to get better, or access support, or “love” myself, or accept that I deserve a life that is more than the hell of mental illness is just, well, late. And how sad it is that time has slipped away; mental illness has cost me so much time. 

And that hurts. 

So this isn’t going to be all that long, because, well, I’m still trying to find the time to engage my brain and focus on life and living and exist and “get better,” but I wanted to acknowledge that time is mental illness' greatest cost. It might have a massive impact on the economy etc., but nothing comes close to the lived reality. I've said it before and I'll say it again, the cost is time. People's lives are the price. And you simply cannot put a value on something as precious as a life.

I have spent the past 8 years of my life at war with my own mind. I have spent year after year very much caught up in anorexia’s lies and torture, functioning and watching life from a distance. I’ve been suspended on my own tightrope of hospital admissions and dependency on health professionals and a mental health system that is painfully, dangerously lacking in resources, funding, and time. I’m stuck and paralysed and suspended…still hanging on.

Still. Hanging on. 

And yet, life doesn’t “hang on.” Time ticks on. Life becomes more terrifying with every day I spend suspended. My life is about waiting lists and waiting times and waiting rooms and waiting. But life does not wait. My name and date of birth, my postcode and my NHS number might be frozen in time, stuck on a waiting list that doesn’t seem to move an inch, but the world around me whizzes by with pace and buzz and expectation that I cannot keep up with. 

I’m “late” for life. 

Waiting times, shortage of services, inadequate finances, the tragic reality of the postcode lottery…mental illness is costing sufferers too much time. The system is making too many people “late” for life. And there’s nothing poetic about the time people lose whilst trying to keep themselves alive. 

I’m trying. I’m waiting. I'm fighting. 

And I’m sorry, I’m sorry I’m late.

I’m currently in a level of debt I may never pay off.

I currently do not have the “luxury” of being able to pay into a pension fund.

I’m facing a long working life. I’m 22. My generation will probably (almost certainly) retire at an older age than ever before. My generation are also, probably, spending more on education, facing greater debt, selling ourselves on the most competitive job market, more unable to get on the housing ladder…than ever before. When I retire, hopefully after many happy years in a career I have loved and lived and breathed in all the right ways (although, the reality is probably less rosy), I want a pension. More than that, I’m going to need a pension, because this world I’m growing up in, this economy I’m contributing to, this job market I’m competing in, this business I have no choice but to enter, is going to demand every penny I earn, above and beyond my wellbeing, sanity and health. 

I do not want to be a “human resource,” because life is about more than that. Like all those who stand to lose their pensions, I am a person. As humans, surely our value on this earth has to be more than the sum of the hours we work?

The withering away of a system that valued its “workers” as people has been subtle and sly. This is not “flexibility”. Flexibility is holiday pay, because you value people’s commitment to their work, but you know this is dependent on their wellbeing. Flexibility is maternity and paternity leave, allowing working hours to be tweaked as far as possible, so that childcare can be negotiated (don’t even go there on the reality of this one…), because you know that your “workers” are not emotionless robots that function in isolation, and you value their life beyond the work place (not solely so that they can produce tomorrow's workers). Flexibility is sick pay, because nobody chooses to get ill, and sometimes, life happens despite our best efforts, and that’s scary enough, without the risk of having to navigate this without a wage. Flexibility is a lot of things. Yet surely, if flexibility neglects either the employer or the employee, then it isn’t “flexibility” at all? It’s manipulation. It's negligence. And it’s unfair. If too heavily weighted, one way or the other (although, let’s be honest, this only seems to tip one way) then that’s simply not flexibility, that’s sugar-coated-term-changing-and-hoping-no-one-questions-it.

Well, here’s the thing: people are questioning it. People are questioning it and disputing it and demanding it be heard, because for too long, “workers” have been silenced. Fear-installation is perhaps the most controlling mechanism anyone can exert, and it’s been drip-fed into us all for too long. Whilst fear may silence and demand compliance, it seems this carefully crafted concoction has gone wrong somewhere in production. This latest dose just isn’t working. Technical malfunction. Staff and students are uniting; the rose-tinted glasses have lost their rose-tintedness. And when the whole system is dependent on the “workers” being drugged up, silent, unquestioning (the “perfect workforce”) the system cannot work if this “perfect workforce” is anything less than drugged up on silence and compliance.

And as for us students, so carefully protected from the big bad world of business, nestled in our little academic bubble, rolling out of bed around lunchtime, swanning around in designer sportsgear, maybe rocking up to a lecture (or maybe ordering Domino’s and watching it from our beds): we’ve been grown on, nurtured by, sustained with the perfect blend of possibility and regulation, so as to make us into perfect sponsors, investors, buyers, workers... Competition is bred into us. Our education is entirely driven by competition. Our parents are told to consider our primary school choices carefully. By secondary school, we’re herded like cattle, and segregated by school choice (and parental income). And then come league tables. If you’re bright/determined/spoon-fed/competitive/coached enough, aged 16/17, your shiny eyes devour the tops of university league tables. You’ve been taught (not just told) that the world is your oyster. You’ve been taught that you can have it all. You’ve been taught to aim high. You’ve been taught that the priority is how good you look on paper. I’ve been there, I’ve done it…although actually, as a “product” of state education, I believed I’d been sheltered. I hadn’t. My grades became figures in league tables. My grades became badges of honour…and not solely because I worked bloody hard, taught myself 2 years of English Lit A Level in about 6 months and re-sat the whole thing because my school screwed up, wouldn’t admit liability, and my plan to do an English degree was somewhat less certain. That came later, but back to my rose-tinted glasses days: 16/17 year old me, wanting to go to uni, drew up the league tables, typed in “English” and scrolled no further than those golden top 10. I’d been preconditioned, and I didn’t even know it. I knew I wanted a Russell Group University, because if it’s “possible” then why the hell wouldn’t I want to go somewhere that would give me the best chance of the best education, which, of course, naturally translates to the best chance of looking the most employable?!

For what it’s worth, I have no regrets: coming to Exeter in 2013 was the best decision I ever made. I’d go so far as saying it saved my life. In 2017, I returned to do an MA, because I know that all the good things about the University of Exeter are really good, "execeptional"..the best in the world. Rewind two months and I’d defend it from the rooftops (and I’ve been preconditioned to comply, work hard and not draw attention to myself). But let’s just clarify, I came to Exeter, yes, partly because of where it sat in the league table, but also because of everything it seemed to value, especially wellbeing. Moreover, although my decision was, in part, based on the omniscient league table, naïve and sheltered younger me believed that these league tables were representative of education, and not business. I genuinely thought that league tables solely depicted academic result/satisfaction/teaching; I believed that league tables solely measured the quality of the education on offer. In hindsight, I'm not actually sure that education can be accurately measured anyway, but that's a topic for another day. And, as someone who had spent a fair amount of their education in classrooms with a rather "mixed bunch," many of whom frankly did not want to be there and were going to make that very, very clear, I could not wait to enter a classroom with like-minded people. That is, I cherished the idea of discussing books, rather than ducking as they were flung across the room. I wanted to be taught by people as passionate as I was, because I'd experienced what it meant to be taught by someone who was solely trudging through another day in a job that paid the bills. I came back to Exeter because I do not wish to waste time look for a department that rivals Exeter’s English department. I want to be taught by people who are specialist/experts in their area. I want to be taught by people who want to teach me and really love their jobs. The reality is that at a Russell Group university, I want to be taught by the best of the best: that is kind of the point. And if we want to be crude, that is what I’m paying for. Take away the "attractions/luxuries/perks," the best of the best will simply venture elsewhere (be that through choice or necessity). And that stands for staff and students.

In hindsight, I guess those league tables tell all sorts of tales, not least how well an institution ranks as a business. This notion of university being a business is one I’ve resisted as much as possible. It’s one I’ve lalalala-ed and tried to ignore. It’s one that, right now, with people’s livelihoods on the line, seems truer than ever. (And, in case you haven’t gotten the gist, I really hate it.) I want my education to be about education/learning/being taught and inspired. And, as a chronic apologiser, I’m not sorry; I did not sign up for this and I do not want to be a worker, or a sponsor, in what I’m increasingly realising is a corporate organisation: a business trading in big bucks. You do not get to use my money, or my marks, to fund your exploitation of those who know me as a person.

Let’s talk money. So long as I could get the loan for it, I’d pay whatever for my education. The reality is, the higher the price, the bigger the loan, the greater the accumulation of interest, the less likely I am to ever pay it back. And, whilst I have an extortionate amount of debt beside my name, I love education too much to be turned away by a price tag (evidently, this is very much dependent on comparable loans). I know saying that risks sounding exceptionally privileged, so I’m just going to put it out there that my degrees (BA, and MA) have been solely funded by student finance/government loans and myself. All my living expenses for, what will be, the four years of my degrees, have been funded by student finance/government loans and myself. So, my debt might be excessive and terrifying, but I know that without the loans that were introduced alongside higher tuition fees, I would not have been able to do my degrees.

However, let’s just clear this up: I’m paying for my education. In that, I’m paying for my tutors and to be taught, for my essays to be marked, for my ideas to be discussed and for the admin teams that make all this possible. Admittedly, I’m also paying for a degree of maintenance, but let’s be realistic, when you’re raking in the funds you clearly are, the percentage each student is paying for maintenance/rebuilds and development to secure the uni’s future, should be minimal…right?! Apparently not. And yes, I get it, in order to be a world-leading university, we have to have the latest tech and the snazziest buildings, but, urmm, as one of the people who, evidently, is funding this, could I please just raise my hand and state that I am predominantly paying for my education, not for super-edgy looking buildings with lots of glass. You know, it’s great and all that…but, as a humanities student (and, I’ve never used this argument before because it’s crude and reductive, but if that’s how you want to be…) I’m paying a lot of money for minimal contact hours…and still have to shell out additional expenses for the actual books. Now, I’ve had the “your degree is just an expensive library card” comment one too many times, and I’m not even going to go there; ultimately, I am studying English because it’s what I love and it’s what I enjoy, and because life is too short to solely think about employment. That is what education should be. That said, I’m paying the same as everyone else, because we’re all about the equality and that’s fine, but I am not benefiting from the latest tech, and my college building is shit.

As I say, I’m kind of resigned to the fees I pay, and normally I wouldn’t question them because I value my tutors immensely. However, when the tutors, who are funded by my money, are on strike, surely I’d be ignorant/naïve/complacent if I didn’t ask the question: where is my money going, because I’m not receiving the service that I’m paying for, and unless Queen’s is going to be renovated dramatically (more than new sofas and a few stickers – lovely, but surface level) over the coming weeks, I’m not entirely sure where these past week’s fees have gone?! And, to be clear, I’m not totally naïve: I know the university needs senior management and financial advisors and businessy people doing businessy things, but that should be secondary to my education. My education is dependent on the wellbeing, sustainability, and, urmm, presence, of your employees. So if you want to run a business, at least run it well! I'm no business student, but I dare say sustainability is crucial?! Reality check: your employees make your university. No student I know came to Exeter because of its senior management team.

I like to think I’m a patient person. And I really hate the idea of being a difficult patient. But, in all of that, let’s just remember that I am a person. I was a person before I was a patient, and one day, I hope to be just a person once more.

I have been very patient. I’ve waited. I’ve given it time. I’ve waited some more. I’ve been a name in a system. And I’ve been a name trying to get into a system. I’ve been a date of birth in a spread-sheet. I’ve been a list of behaviours and a mobile number. I’ve been a weight. A weight waiting. I’ve waited.

Eating Disorders Awareness Week (26 February-4 March 2018) is asking the question: “Why wait?” This is two fold. Evidence suggests that, “on average, 149 weeks pass before those experiencing eating disorder symptoms seek help. That’s almost three years, 37 months or 1,043 days” (BEAT). This makes the gap between symptoms and recognition, without doubt, one of the largest, and suggests a need to increase symptom-awareness. Furthermore, BEAT states that “[e]ating disorder sufferers face an average wait of three and a half years for specialist treatment”. Again, would this happen with other life-threatening illnesses? More than three years, in the grips of a life-limiting, life-claiming illness is a dangerously long time. I’ve said it before, and I’ll say it again: it’s as though professionals/the health system/powers-that-be are playing my life like a game. That might sound somewhat ironic from someone controlled by anorexia, and treading various precarious lines, but that is exactly why I need help. This is exactly why this wait is wrong. People's lives are in question.

The first “professional” I ever saw was a school counsellor. She repeatedly told me how I was “really very lucky, because at least I didn’t have anorexia”. Admittedly, at the time, I was yet to be diagnosed with said illness, and was seeing her for other reasons. However, I was eating disordered, which she didn't know, because she's never actually asked me anything about my eating habits. Honestly, I’m not entirely sure how she made such an interesting observation regarding how lucky I was. (There’s no luck to it.) Not only was this a missed opportunity, it also dismissed all other issues I was experiencing and fed me the belief that nothing was wrong with me. Of course, I’m not blaming this woman, she was a very small piece of a very big and complicated puzzle. I’m simply highlighting the early days of a very long wait, and a discourse that contributed to me continually doubting my symptoms.

In the six years since that first appointment I have seen many different professionals. I’ve also stood and watched helplessly as many friends have been subject to a similar post-code lottery waiting game. I have waited and consequently, I have, quite literally, lost years of my life. I’m still waiting. I currently sit, attached to my phone, as I wait for my fate to be decided and fed-back to me (no pun intended) once more.

Having accessed specialist eating disorder services for a period of time, I know they make a massive difference. This is where lives are saved. This is where the healing starts. This is where the living reemerges. Whilst under their care, I finally began to make progress, both physically and mentally, however, this too was cut short, namely due to “complexity” and my move back to university. I slipped through the net once more. Eating disorders need specialist care. With specialist care progress IS possible.

Repeatedly, much to the disapproval of my “must please everyone and be the perfect person” tendencies, community mental health teams are unsure quite what to do with me. I’m functioning (debatable, but let’s just say I am because I’m doing a degree…a second degree…), well-dressed, well-spoken, smiley, polite, cooperative… I am not your standard “sick” person. And whilst you’d hope that mental health services would appreciate this, and see through it, often, generic mental health teams are flummoxed by my all-consuming issues, which lie so carefully hidden in essays, brushed hair and coherence. Anorexia fools them all too well, and I’m left small and side-lined once more.

Perhaps my favourite thing that a professional has ever said to me (just topping “you smile too much,” and “you need to take off your shoes and walk in the grass”) came about two years ago, as I approached the end of my undergraduate degree: “Yasmin, I think the best thing you can do is to do some research into where in the country has the best eating disorder treatment, and then move there.”

*smiles politely and thanks for his excellent advice*

I’m not sure he quite realised how all-consumed I was. I’m not sure he realised how I was on my knees and begging for help. I’m not sure he realised how much more time I would lose in the months I still had under his care, in his catchment area. It’s been said many times, but this simply would not happen in other areas of the health service. Fact. A patient – because yes, I am, still, unwell, a person – because this is my whole life here, with a broken bone, a long-standing health condition, an illness that threatens to take their life, would not be told to a) play detective and seek out the illusive service that might just be able to help them, and b) would not be expected to, quite literally, uproot their already shaky life, move hundreds of miles from friends and family (who are fundamental to recovery and LIFE – I owe you all the whole world for keeping me smiling when pain and suffering feels endless) and rebuild their existence?! It just wouldn’t happen. It doesn’t happen.

At some of my “most unwell” times, when I have been most desperate, it has been largely due to utter hopelessness. I have spent years of my life waiting. Does waiting ever stop? Or is waiting just my existence now? 2018 hasn’t exactly gotten off to the start I had hoped; I’ve spent 8 solid weeks waiting, and been really quite unwell. Before that, on moving back to university in September 2017, and despite my home team sending letters and communicating with local services in June 2017, I waited until the end of February 2018 for an appointment with the local eating disorders team. The time between September and February? Well, I’ve been functioning…academically. I’ve also been chasing referrals and chasing my marbles….I wish I could do this on my own. More than anything, I wish I could recover without anyone’s help. I’m stubborn and determined and perfectionistic and eager to please, but I am risking the wait and admitting that I need help. I don’t think people have any idea how hard that is…how terrifying it is to quite literally put your life on the line, time and time again…and be put on hold. I’m sorry, but this is my life. My whole entire existence. I can’t put it on hold and just put anorexia to one side and go about my life. That. Is. The. Whole. Bloody. Point.

 

This is my life. And I got ill. And it really sucks. And I’ve lost so much time. And I’m still losing. (No before/after/hospital picture will demonstrate anywhere near the reality of living with anorexia. No weight loss will ever capture the reality of how much time…how much LIFE and LIVING…I have lost.) I’m still waiting. And I have no choice but to wait, because this is my life.

With specialist care, when I was in a better place, when I had the energy to fight, the motivation to imagine a life without anorexia, and the hope to believe it were possible, recovery was not impossible. It was tough, and it was a process, a work in progress,  but it was not impossible. Now, I’m waiting. Again. Patiently. Because I’m a patient. But I’m also a person. And I’m still, still waiting.