The long goodbye

Grief is a very profound experience. My grandmother passed away almost three years ago, and we had been losing her slowly over many years before that, as dementia slowly stole from her every precious memory she once held dear. It has been about a decade since she was fully herself, and yet last night, I awoke in the night and sobbed because I still miss her. I hope I always will.

Dementia can seem the stuff of nightmares; before knowing any sufferers, there seemed something terrifyingly insidious in a disease that steals the very identity of its victims. Moments of lucidity in a sea of confusion giving glimpses of a person much loved but rarely there. Torturous self-loathing at the many petty frustrations caused by the limitations of a diseased mind. A shared joke being a shaft of hope, a taunting but fleeting moment of precious connection in a relationship that is faltering and fading as pathways in the brain are eroded forever.

As dementia took hold, Granny made her home on a carousel of memories that was slowly shrinking and spinning ever faster. The endlessly repeated thoughts, turns of phrase and stories that she could still safely stroll through were her only refuge, as the rest of the world whipped past her in a confusing blur. We would jump on a perceptive comment, one from outside that monotonous cycle, hoping it was a sign of improvement, but knowing deep down that her only progress would be into oblivion. We would try to coax her from the roundabout, hoping to guide her safely down a crumbling pathway before it was eroded forever, but that was wishful thinking. There came a point at which she was simply no longer able to validate shared memories, they had become ours alone. She lived in a world we couldn’t possibly understand because it was formed not from any recognisable reality but from disjointed fragments of past realities glued together with desperation.  

The emotions of missing her while she was still here were hard to process. The living breathing person who shared a physicality and a few personality traits in common with my warm, creative and strong grandmother was both her and yet not her. We couldn’t mourn what we had lost, because she was not yet gone, but we couldn’t spend time with Gran either, because she wasn’t really there any more. We found ourselves in a strange limbo and one that I was ill-equipped to deal with. Her dementia frightened me. Selfishly, I saw my possible future in her and sprinted desperately through my own precious memories, breathing them in, clinging to their solidity even as I watched her floundering.

But she also gave me great hope; even as the disease consumed her mind, Granny’s unshakeable positivity and kindness remained. Although her mind and body faded, her smile was a constant. Although she couldn’t remember the branches of her ever growing family tree, she long retained a sense that we were somehow hers; we could still feel her love and show her our own. Although she would not remember that we had visited, the emotional glow from spending time with loved ones would stay with her and sustain her in the strange world she made for herself inside her ailing mind. I wish I had known more about dementia and been less afraid of it, because the woman we loved was still in there and sometimes photographs, music, smells, spending time in the garden or visiting old haunts would help her to connect with shared emotions or simply bring her joy. Much of the fear I had of her illness was my perception of what she had lost, when I should have taken more time to appreciate what remained, to visit her in her new reality.

Gran’s funeral was a heartfelt tribute to her and I think she would have loved it, all the family gathering round her, as we so often used to do in her home. After years of missing her, we could finally mourn her, and I had never before attended a service where the love in the air was so palpable. The relief of being able to savour our precious memories of her and to laugh and cry over them was almost unbearable. While she was ill, each of us had bottled up our anguish at watching her slow decline; it had somehow seemed obscene to talk of missing her while she was still alive, but we had missed her so often and in so many ways.

Gran was not just an old lady who rambled in confusion. She was a child who lost her father when she was young, a wartime teen, a young teacher, a woman in love, who kept the sweet and touching letters my grandfather wrote to his fiancée, a member of the church choir, a mother, a farmer’s wife, a talented embroiderer, a loving friend, someone who delighted in meeting strangers. To remember her only as she was in her decline would be to dishonour her dreadfully.

There are so many ways I wish to be more like her. Gran’s hugs were never cursory or insincere; she would gather me up tightly in her arms and plant kiss after kiss on my forehead and I knew she truly meant every one. She always made time for each of her eight treasured grandchildren; even when we piled into her bed at 6am we would be welcomed with boundless love and enthusiasm. She encouraged us to use our imaginations and would make treasure hunts and take pretend trips with us around the world. She was an excellent cook and a keen local historian with a beautifully tended garden, and she genuinely sought to share those passions with us; she knew, as I often forget, that inspiring a child is far more beautiful than uniformly chopped carrots, unthumbed family photo albums or pristine rows of flowers.

Despite impacting so very many lives (one in every six people over 80 suffers from it) and its cost to society, not only emotionally and socially, but financially (for every person living with dementia, the annual cost to the UK economy is over £30,000), dementia research has limited funding and too few clinicians and researchers working to fight it. It is one of the unfortunate causes that is tainted by taboo; far easier to make light of memory loss and confusion than to face the terrifying reality of clumping tau proteins and the build-up of amyloid plaques, which kill the nerve cells in the brain and cause hippocampal shrinkage and ultimately whole brain atrophy. Nobody wants to imagine their brain wasting away but that is what is happening to 50 million people around the world.

It makes me sad that Gran never confided in us about her failing memory. She bore the burden of that fear alone, while we all hoped desperately that it would simply go away, that it would somehow resolve itself, that perhaps we were imagining things, that perhaps she was just becoming forgetful. I spent the disease’s infancy in denial and its later stages filled with guilt, as I realised the physical reality of its progression. There is still such reticence to discuss mental illness in any of its guises, be they dementia, depression, eating disorders or anxiety. Until we can overcome that sense of awkwardness, we won’t be able to face them and help put a stop to them. I live in hope that there will be progress with halting dementia before another generation faces the grim reality of losing their brain tissue. And if there is not, I hope at least that there will be greater understanding, openness and acceptance in society to help them through it and to value each individual as they are, disabilities and all; to look past what has been lost and see what remains.
Facts and figures taken from the Alzheimer’s Society and the World Health Organisation:

But it’s about a girl…

I can’t get too frustrated with my children as they sneak an extra five minutes of reading time instead of brushing their teeth, or sit on the toilet with a book after lights out, because I understand their desperation to read just a little more, just one more page, just to the end of the chapter, just to the end of the book. Engrossed in the adventure, enchanted by the brave, funny, talented and quirky characters and lost in another world, I feel cruel dragging them away for something as mundane and sensible as basic dental hygiene or a good night’s sleep. I can see them falling in love with the protagonists, wanting to be them or know them.

My eldest dressed as a certain beloved boy wizard for world book day, complete with scar, a handmade replica of his wand and the copy of Salazar Slytherin’s locket housing a note from Regulus Black that she penned herself. She knows those books inside out and every tiny detail is important to her. As she marched proudly to school, we all gasped as one when a wise bearded eleven year old Gandalf emerged from his house en route, for we are reading the Lord of the Rings together and the fellowship has just left the mines of Moria.

In my own writing I hope to evoke those amazing connections with characters; the ones whose wisdom and strength makes you feel safe, the selfish ones that infuriate you, the irreverent ones that make you laugh, the powerful ones that make you quake and the struggling ones whose bravery you admire. Despite being set in a dystopian world, I want readers to wish themselves into my book to share in the magic, to dream themselves into the garb of the characters, so that they themselves form part of the fabric of the world they create inside their own minds from the words on a page.

As my book grows and develops, I can hear the voices of my characters before I write their words. As I put them in different scenarios I can see the indignation on their faces or their eyes lighting up with glee and my job is simply to describe it. They have eccentricities and foibles, friends and adversaries, strengths and weaknesses and sometimes their flaws are what I love about them the most. They are complex blends of a thousand different traits, some admirable, some not, and are motivated by their own ambitions, hopes and fears.

Reflecting on the characters that have most drawn me in over the years, there are certain qualities they have in common; the ones that spring to mind are determination, loyalty, bravery in the face of adversity, kindness, inner strength, humour, integrity, diligence, a willingness to stand up for their beliefs and to protect those they love, humility, trust. Whether displayed by hobbits, humans, anthropomorphic animals, wizards, elves or aliens, these characteristics are universally admirable. Some characters transcend their fictional worlds and we take them into our hearts, they can inspire us, amaze us, impress us, leave our hearts racing, make our cheeks ache from smiling or leave our faces damp where tears have rolled silently down our cheeks.

One factor that has never been of relevance to my admiration of a character is their gender. I lived the journey to Mordor with Frodo and Sam with my every heartbeat; swapping them for Freda and Sara would not have impacted my ability to put myself into their hairy feet. I have seen a lot of excellent articles about the lack of strong female characters in books and how this is poor role modelling for girls. It would be ideal to find a wide range of inspirational characters, of different genders, races, backgrounds and abilities. But what sickens me far more than the lack of strong female characters is the inclusion of women and girls who lack any aspirations or meaningful character traits of their own; I can look up to a man as a role model, but I find the plethora of vapid female characters offensive and confusing.

Perhaps as a result of the significant existing gender bias in children’s literature, girls who are avid readers are encouraged to read and enjoy books with male protagonists; a book about a boy can be marketed to all children. Very often in these books, the story is not about gender and thus the main characters being male is fairly incidental. If I were to gender swap the characters in many children’s books, the newly female characters would often make near perfect sense. The questionable personalities would be the newly male peripherals who are jarringly subservient and whose lives revolve entirely and inexplicably around the women. In my opinion it is those roles that most need to change; two dimensional people don’t make sense as men and they don’t make sense as women either.

Of particular additional concern to me, first as a children’s writer who aspires to be published but also as a person who would like to live in an equal society, is that a book with strong female characters is often not perceived as a book for children at all, but as a book for girls. The main protagonist of my first novel is female, and yet it is not a book for girls. It is a fantasy adventure story, with dragons, magic and danger; it is a book for people who like fantasy adventure stories and the gender of the reader and the main character ought to be irrelevant to anyone’s enjoyment of the story. I have not yet reached the stage of discussing publishing or marketing the book, but already I have had feedback that there ought to be a boy as the main protagonist in at least a few chapters, or boys won’t want to read it.

Boys won’t want to read it, because it isn’t about a boy. That statement may not seem shocking or offensive, but I think our society needs to move towards finding it so. It is not only girls that need strong female characters that they can relate to, but boys as well. What message does it send to boys if books with women or girls in them are perceived as somehow beneath them, somehow less exciting, less worthy, less interesting. Like so many of my favourite stories growing up, my book is not about gender at all, and I hope that every character would stand up to a gender swap. At the point where that is achieved, the only objection to reading a book with a girl as the main character is an objection to girls in principle. And if my generation of women has looked up to strong men, I would like to challenge the next generation of boys to look up to strong women as well as strong men.

In an equal society, we would not even need to think about the gender of our mentors or role models, for the characteristics we seek to emulate are not usually sex based. Why would I insist on keeping my main protagonist female, you may ask, if it may well impact the book’s potential sales significantly? Because in an equal society, books aimed at all children would have a balance of male and female protagonists, with children reading the stories with content that appeals to them, rather than limiting themselves to books where they have genitals in common with the people who happen to feature most prominently. Of course we all want role models that look a bit like us and to whom we can more easily relate, but we can also admire and appreciate those who don’t. In an equal society, having a female protagonist would not impact sales at all, they would come down to whether it was a good story and well written. But to get there, we need to make plenty of those books available and encourage both boys and girls to read them so that we all get used to a world where there is no debate about books starring boys and books starring girls, just people seeking stories that inspire and move them.

The Lost Art of Disagreement

Our opinions are formed over a lifetime, a set of beliefs, principles and preferences that we continue to tweak and hone every day. Political persuasion, religious conviction and how to raise our children, through cats versus dogs and cheese course versus dessert until we get to the tiny decisions, should jam be kept in the fridge or the cupboard, should the dishwasher go on in the evening or wait until after breakfast. The wider importance of the issue does not always correspond to the fervour with which an opinion is held; the causes that prompt our passions or enrage us the most may even seem petty to others who are inflamed by very different issues. Some people support their football team or their love of cats with a passionate evangelism, others spend every free minute campaigning for reducing plastic waste, animal welfare or women’s rights, yet others may feel their strongest convictions relate to cheese and wine, collecting antique clocks or accuracy in punctuation or grammar.

Some strongly held beliefs will stand unchallenged regardless of any outside influence, others seem to shift direction with the breeze and are always open to reconsideration in the light of new information or argument. Which stance is praiseworthy seems to depend on the convictions of whomever is judging; where a like minded judge sees a steadfast and committed supporter, one with conflicting views might see a dogmatic bigot who simply won’t listen to reason. Where a fellow believer sees a flimsy lack of dedication, an opponent may welcome an open-minded debater who will listen as well as speaking. The perceived merit of the underlying argument seems the key factor in whether devotion is laudable, which becomes rather circular.

One might think that the most passionate believer would make the most successful advocate and sometimes that can indeed be the case, for there is something inspirational about the truly devoted that can sweep the uninitiated along in a sea of enthusiasm and fervour. But sometimes those who are most dedicated to their cause can alienate those who are open to hearing about it because they may simply dismiss even the notion of an alternative viewpoint. To the undecided or the questioning there is something much more attractive in considering the possibilities and reaching a reasoned conclusion for themselves than in submitting themselves for indoctrination.

I have been fortunate over the last few years to find a range of political views across my social media bubble, perhaps a sign of my own indecision about how the world ought to work, but nonetheless a potential asset in trying to form some sort of worldview. But engagement is very difficult when arguments descend into ‘them and us’ and ‘good versus evil’; very few people cast themselves as a villain and the debate is quickly lost in point scoring and name calling, leaving those who want to follow any thread of rationale frustrated and both sides more entrenched than ever. I’m often desperate to find rounded debate, that explains the issues within their wider context. Very often a view on one particular political issue will be heavily impacted by one’s view of how the world ought to work. Very often compromises have to be made that satisfy neither side, leading to frustration all round.

Take, for example a group of four students sharing a house. Two are politically ambivalent and open to persuasion, they are dressed in grey. The third dresses head to toe in blue and has a right wing bent, believing that each housemate should be responsible for themselves and that only essentials, such as heating bills ought to be funded through a common account to which each contributes, that way each can prioritise for themselves where to focus their resources. The fourth is politically left wing, wears red and believes that the cost efficiencies and time savings of combining resources will help all of them, both financially and practically, with a common fund being useful for a wider list of everyday essentials, toilet paper, cooking oil, bread, milk, butter and cleaning products, with people choosing where to prioritise their funds over and above those which are common to all (or most) of them.

A house meeting is called because of a toilet paper situation. After a debate and a vote, toilet paper was included as a house wide expense and the grey students have each taken their turn purchasing a large multipack of soft, strong and puppy embossed roll for their facility. Now that it is the turn of the blue student, a cheap and uncomfortable single ply has been provided. The grey students would not have called a meeting over such a small matter, as they can still use the toilet adequately, although they are mildly irritated about the poorer quality paper. Red is outraged and rants about the cruelty and selfishness of blue, who has the deepest pockets and yet has been stingy in selecting the communal paper. Blue points out that red is by far the biggest consumer of loo roll, being both the most lavish user and because red’s partner regularly stays at the house and makes use of their bathroom. Blue considers it outrageous that the others in effect subsidise red, particularly given that blue would never choose to spend money on luxury paper and sees no reason why red pays only a quarter, whilst being the one who benefits the most. Red is outraged because hemorrhoids mean that the paper provided by blue is unusable and argues that really they all ought to buy luxury quilted roll to soothe this affliction. They declare each other selfish and storm off leaving the greys at a loss.

The greys don’t really care who is right or wrong, they just want everyone to stop shouting at each other. In blue’s ideal house, everyone would buy their own paper, allowing blue to purchase a value option and exercise frugality in its use to save up for things blue considers a bigger priority. In this scenario, blue would be happy for red to buy super soft quilted, use a roll per session and invite a partner to do the same. Blue just doesn’t want to help pay for it, as each housemate has limited resources and each would be happier if they could decide on their own priorities. In red’s ideal house, most things would be communally funded, everyone would be spending less and having to shop less often and even if blue is benefiting less than others, overall blue should still do better than buying things alone because of the overall efficiencies in clubbing together, not to mention the improved atmosphere of equality and sharing in the house. The greys could live relatively peacefully in either house, but they are upset when red accuses blue of deliberately inflaming red’s piles because blue is a selfish and cruel housemate and blue accuses red of trying to sponge off the rest of them to fund red’s partner, an obsession with quilted rolls and a four pint a day milk habit, even though he knows one of the greys is vegan.

What the greys really want is for blue to concede that the majority want decent quality communal toilet paper, because having four loo roll holders is impractical and for red to accept that nobody else likes quilted paper and that perhaps red’s partner ought to chip in every now and then if staying regularly. But neither of them dares to speak up because of the insults and anger flying around the house. Having the conviction and the energy to fight for your beliefs is an amazing gift, but in doing so, the passionate need to remember not to disenfranchise the undecided and the greys stuck in the middle by castigating their opponents, for it halts every hope of reasoned debate. Those of us who are afraid to speak up need to do so; if we all disappear when the debate turns to hatred, how will any of us move past it.  

Today is International Women’s Day and I must confess to a fear of sharing my feminist views online because of the backlash I so often seen when people do. To me feminism is about equality, it is not about hating men or promoting an exclusive and angry agenda full of blame and hatred. It is about working together to make sure that a child can fulfil their potential regardless of their gender. And at the moment, the main gender barriers in our society predominantly impact women, and we all ought to work towards addressing that.

There are many things that feminism is not about. The fact that it does not seek to address every injustice in the world really ought not to be held against it. Nobody criticises a charity for dogs for failing to help injured whales. Feminism is about gender equality, advocating for women’s rights to bring them up to the level enjoyed by men. Most feminists would happily acknowledge that there are issues that impact disenfranchised men, but feminism is simply not a cause set up to address their concerns, it is there to address the numerous ways in which women have been disenfranchised for years. That does not mean that we are trying to trample the rights of those men; wanting women to be paid the same as men for doing the same work does not do those men a disservice, unless you consider that they ought to be paid a premium simply for being male. Nor does it mean having no sympathy for causes such as addressing the high male suicide rate or bias against men in the criminal justice system and in family law; one can be a feminist and support addressing these causes too, much like you can donate to the British Heart Foundation whilst applauding those who do the same for Anaphylaxis Campaign or Macmillan.

I do not want my eight year old to feel that she cannot stand up for herself because it isn’t ‘ladylike’ to be decisive or insightful. I don’t want her to sit quietly to one side and ‘let the men talk’ because her views are seen as somehow less valid because she has two x chromosomes. I don’t want her to see countless adverts that tell women that they ‘deserve’ skin that has been drenched in expensive moisturisers, foundations and concealers, highlighted with bronzers and blushers and photoshopped until it is no longer skin at all. I don’t want her to see TV shows where women are decorative or where their only conversation concerns men and how to look beautiful to earn them. I don’t want her to be ashamed of her body hair or to anguish over her blemishes instead of running on the beach and playing in the water. I don’t want her to hate her body, her own physicality, because of how society tells her she ought to look; I want her to enjoy her life, to eat good food, drink nice wine, to dance, to feel no shame in physical pleasure and feel no pressure to indulge somebody else’s if she doesn’t want to. I want her to live her life an equal with men, to choose a career because of her talents and her passions without even considering that her gender might be a hindrance, to walk down the street without fear of being objectified or dismissed because she has breasts and a vagina.

So many inspiring and dedicated women have done so much to further equality for women, and often against backlash that seems unbelievable to modern eyes. When I first heard of feminism I thought it was historical, that women had got the vote and access to the contraceptive pill and now had the same opportunities as men. I was informed that it would be ‘political correctness gone mad’ if people were told that ‘man up’ or ‘grow a pair’ suggested strength and courage were a male preserve and that ‘crying like a girl’ or using ‘woman’ as an insult might belittle women. Little girls are routinely greeted with ‘oh, don’t you look beautiful’ while boys are complimented on their fast running or their bravery. Girls are praised for sitting quietly and showing nurturing behaviour, while boys are forgiven more boisterous play, even if another boy is hurt by it, and encouraged to challenge themselves. This gender stereotyping causes problems for everyone – girls are taught that their value is in their looks and in being compliant, boys are taught that they should hide their feelings and that their value is in their strength and leadership. None of these qualities is itself bad, but I think it is damaging if we are measured against a stereotype to assess our individual worth.

The very word ‘feminism’ can seem off putting and part of me wishes that the word itself were more gender neutral to make it more appealing. But feminists do have an agenda, and I believe that it is justified and that we oughtn’t to have to apologise for it. Is feminism the most important of all causes? Not to me, no. If I could choose between curing Alzheimer’s or cancer and resolving gender inequality, I’m afraid they would definitely trump feminism. But being a feminist does not mean championing women’s equality at the expense of everything else, nor does it mean fighting for every cause that every feminist has ever mentioned. It simply means working towards equality for women. And although my opinions are still very much a work in progress, I am firmly behind that. Happy International Women’s Day to all the incredible women in my life, you inspire me and give me strength.