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: https://www.alzheimers.org.uk/info/20027/news_and_media/541/facts_for_the_media  http://www.who.int/mediacentre/factsheets/fs362/en/

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.

I’d do anything

Whether you consider it hyperbole or a simple truth, this turn of phrase is often used as an expression of devotion. It suggests a deep and unbounded passion that eclipses everything else that we hold dear and takes its place as the foremost of our priorities.

It sounds rather lovely, but I am suspicious of it. Perhaps most importantly, it seems patently untrue to me; even the purest love, most impassioned commitment to a cause or most fervent ambition ought to be tempered by reason. It may not be romantic to listen to rational argument, but it is sensible to at least consider it in the light of relevant circumstances and other competing priorities. ‘Anything’ is a pretty broad category and in holding oneself to such a profound promise it is not hard to imagine a growing list of caveats that would need to be added to it to make it true, unless one is prepared to cross the line into extremism.

As well as being untrue, I think it ought also to be seen as unappealing. Perhaps the speaker intends only to express a deep love or commitment, but if they genuinely do mean to declare that they would commit any atrocity in pursuit of it, I see not steadfastness but insanity or, at best, naivety. Nonetheless, when a parent professes that they would do anything for their child, the expected response is to agree wholeheartedly; it would be socially awkward to retort that I wouldn’t, however true. It may sound callous, but I would not do ‘anything’ for one of my children. If one of them needed a transplant I would sacrifice myself but I would not run over a number of potentially matching children in the locality in the hope of finding a donor to save her. There are, in my view quite rightly, limits to what I would do for those I love. That does not render those deep bonds meaningless, it simply means acknowledging that they are not completely boundless.

Quite often, and even more irritatingly, the phrase is used as a very thinly veiled criticism: ‘Oh, you didn’t bring in any cakes. It can be hard when you’re busy, but I’d do anything for my colleagues/kids/church/charity.’ In this case the phrase is not so much directed at the speaker’s deep commitment but at highlighting your lack of it. But even dedication that would go so far as doing ‘anything’ would surely not be a commitment to doing ‘everything’, otherwise the phrase becomes even more ludicrous. It also ignores the relative importance of everything else in your life; your first priority may be your children, your partner, your job, your faith or your cause, but not such that anything done to that end, however small, trumps everything else in your life. If a friend called from hospital needing urgent help, would you ignore them to bake for the fundraiser or to attend a child’s school play?  

But perhaps none of this matters – it’s just a turn of phrase after all. Except that I think that what we say does matter. I don’t think it’s ‘political correctness gone mad’ to try not to say offensive things. Similarly, I don’t think it’s healthy to say things that we don’t really mean. I have a tendency to worry too much about what others think, and it’s exactly this sort of phrase that recommends dedicating oneself entirely to something or someone else and suggests that doing so is in some way noble.

We need to balance our priorities and I include within that the importance of looking after ourselves. Not only for our own wellbeing, but also to set an example. I love washing up to pop music and usually enjoy a little salsa-style shimmying when ‘Rockabye’ comes on. But there’s one particular lyric in it that always makes me feel sad: ‘she tells him “your life ain’t gonna be nothing like my life, you’re gonna grow and have a good life, I’m gonna do what I’ve got to do.”’ This concept of constant self sacrifice in the hope of giving our children a better future is a potential vicious circle, for it demonstrates to them the importance we place on giving up our own hopes and dreams to further those of the people we love. Expecting our children to then wander into a Utopia where they will find happiness that we have never shown them, seems naive. Needs must sometimes, but if we have a choice, surely we could be demonstrating that improving our own wellbeing can also enhance that of those around us; that investing in ourselves energises us, makes us better partners, parents, employees and friends. The best way to teach our children happiness is to go in search of it.

And so, to protect my children, I’ll be letting them know that, although they are my top priority in this world, I can’t promise to do anything for them.

Not the Done Thing

When I was eleven, the most exciting feature of my secondary school was that it had an animal house. After eating, we could spend our lunch hour playing with guinea pigs, rabbits and chinchillas. We had never had pets at home and I can remember running from the lunch hall because I simply couldn’t wait to get there. Until one day, when I overheard some older girls wondering why the year sevens ran everywhere and I realised it was not the done thing. From then on, running was only undertaken reluctantly as a form of exercise or to catch public transport.

When I was twelve, we each had to give ten minute presentations to our English class as practice for public speaking. My first was on land reclamation in the Netherlands and nestled comfortably between a lengthy and evangelical presentation about canal boating and a very detailed overview of a local football club. By round two, the tedium was hard to bear and I asked if the speech had to be factual; it didn’t, so I had great fun making up a fictional world to talk about, thinking about its culture, ethics and government. Until it came to questions, when the main one seemed to be ‘why are you so weird?’ and I realised that imagination was not the done thing. From then on, assignments were for blending in and being instantly forgettable.

When I started university I had a whole rainbow of corduroy trousers and lots of quirky tops that were bought in Camden Market and didn’t always hold their colour. I loved browsing the stalls for something new, something I’d never seen anybody else wearing and pairing it with something unexpected. Until one day some friends were talking about what they were going to wear out that evening, and one commented that the conversation was pointless as they always all wore the same thing. And that night I noticed that they were all dressed in blue jeans and black tops, like a uniform, and realised that quirky was not the done thing. From then on, although I couldn’t resist a splash of colour, I chose clothes that looked (at least approximately) like everyone else’s.

Part of me is relieved that I had these realisations and learned to fit in. But then I see my eight year old, who chose black and green trainers for school sports, and is upset because the other girls think it odd that they’re not pink or purple. Or my six year old who likes to dance through the house in a flailing whirlwind of limbs but will very soon realise it is not the done thing and instead walk around demurely. These ‘corrections’ will help them to fit in, but will also take from them something of themselves.

Fitting in can make us feel safe and part of a community. But it can also stifle our identity and even stop us from seeking help or support when we need it. Although it is important to understand the rules that those around us live by, there are circumstances when we really should try to break them. We should be able to talk openly about miscarriages and fertility. Marital problems should not be the preserve of the divorced; many happy couples have had their troubles but it is not the done thing to talk about it. Mental health issues should not attract stigma or embarrassment, nor should physical symptoms or differences.

When actually examined, many of the ‘rules’ that we take for granted make no sense at all. When talking to a colleague or client, why must we pretend to be one-dimensional to seem professional? A more genuine connection would improve those relationships and everyone’s experience of the workplace. Why must we dress in shoes that are entirely unsuitable for walking or tie strips of silk in restrictive knots around our necks? These traditions are impractical and uncomfortable as well as reinforcing traditional gender roles and limiting diversity. Why is it perfectly acceptable to talk about skin cancer but not anal cancer, to confide in a friend about having trouble with eyesight or hearing, but not with the vas deferens or fallopian tubes, let alone our mental health? This squeamishness can add embarrassment and loneliness to an already difficult situation.

Today is Time to Talk Day and even if it’s not the done thing, perhaps we could make the effort to speak out or be available to listen, taking the first steps to changing the rules that bind us all.

Resolutions

January is a time of year when many people reflect on their lifestyles and choices, find them wanting and make a change. A new year gives us the opportunity to make a fresh start, though I can’t help but think the bleak midwinter is a suboptimal choice of timing for fledgling diets, exercise regimes and teetotalism. This is partly because I am always in the throws of near-hibernation due to the long hours of darkness and lack of sunshine, and partly because my birthday falls less than two weeks into the year and I do enjoy celebrating with a glass of prosecco or two. I must also confess to a typically British approach to progress, well summed up by Kate Fox:

‘What do we want?’

‘Gradual change.’

‘When do we want it?’

‘In due course.’

Bemoaning change has been a habit of my lifetime, but more recently I have started to challenge myself. Very often the changes we would like to make in our lives are stalled not by fear or lack of ability or resources but by inertia, apathy and the comfort of routine. We meet a friend at the same time in the usual coffee shop, walk predictable aisles each week to choose a near identical trolley of food, skim the menu in a much loved restaurant and simply pick our favourite items each time, indeed it makes us feel warm inside if we are able to simply ask for ‘the usual’.

But trying something new does not mean abandoning comfortable favourites forever, if you don’t like the coffee shop across the street you don’t have to go again next time, if the Chablis isn’t as good, go back to the Sancerre. But these little experiments are worthwhile; it’s how we meet new people, discover new music or food and find new passions. Besides, the terrible wine can always be used for cooking and a disastrous meal somewhere new is far more memorable than a forty third visit to an old favourite.

This is not me evangelising about quitting your job and following your dreams. Quite the opposite in fact. By mid-February most resolutions are abandoned until next year precisely because they are too ambitious; we impose on ourselves a whole new routine starting on an arbitrary date. We seek to enforce rigidity without habit or inclination and actually stop ourselves from trying new things. So instead of promising to force yourself twice a week into the drizzle to pound the dark streets alone, ask a friend to run with you or try out some local exercise groups. Instead of becoming a gluten-free vegan for a month, try getting a veg box delivered and use it to have an enjoyable meat free day every week by experimenting with ingredients you wouldn’t normally use. Instead of becoming a recluse to save money, invite friends over instead of going out. Email an old friend, try a different brand of ketchup, walk on the other side of the street. Life is not about deprivation – find something this January that makes you happy or improves your life.

Disclaimer: As Netflix is removing ‘The Good Wife’ at the end of the month and I am hooked and only on season 2, I will mostly be watching that back to back until midnight for the next fortnight and not trying anything new at all.