Tag Archives: Role strain

Leaving a legacy

P1160603_ed

The festive season hardly seems a time to be thinking about death but it seems like death has been surrounding us recently in a variety of guises. New pet goldfish Tom and Digger found floating on their sides on separate occasions, floppy fins, eyes fixed, graceful in the grip of death. Funerals were held with speeches about their good qualities as goldfish and pets, fantastic learning experiences for young ones about how we recognise death and celebrate life. They then so lovingly buried under the spinach plants to recycle carbon and nitrogen with coloured iceblock sticks marking their resting places.

Our monarch caterpillars this year have also been dying, some virus circulating around the swan plants and infecting and disabling them. It’s not formulaic in how it hits- they haven’t succumbed all at once or at the same size. Some have carried all the way through to chrysalis stage successfully and we’re awaiting our first butterflies although they will hatch unseen whilst we are away. Others have on the surface also resisted infection, although come time for their remarkable metamorphosis the chrysalises instead have been malformed, grotesque coffins. In the main, caterpillars appear to sleep but then go all floppy, hanging in a V shape pinned by their middles to the plant. Resilience and resistance to the virus and its effects obviously varies and even those seemingly untouched may perhaps be carriers onto the next generation. No different to higher animals like ourselves where there may be no easily explained pattern to succumbing to any one of a variety of diseases and great variation among those affected with respect to what toll an affliction takes.

Death has surrounded us out of the home too. My former cat, Holly, adopted by my sister many years ago when I went overseas, needing to be put down recently due to kidney failure, having lived a full and very happy life. MissBB and I went on a final visit to give many cuddles to this much loved, light as tissue paper 17 year old moggy. It was part of the process of coming to terms with a suddenly scheduled departure that saddened all of us. Instructions were issued to nephews, seemingly unclear that the trip to vet was not going to be exactly the fix-it trip they wanted although fix-it it was, that they needed to give their mother much support and love when the trip to the vet occurred.

The kidney disease had been sitting there for a couple of years, hovering and threatening but Holly fought it gracefully and with style. She shouldn’t have lasted as long as she did and she was uncomplaining, always cuddly and one to comfort us, unless you had her on your lap where the phrase ‘Claws in’ never seemed to resonate. The terminal nature of her illness hit hard when she was first diagnosed, even for me who had long since relinquished parental rights. Once a parent, always a parent. As time went on though, it seemed she was perhaps invincible, one to beat this disease. Humans, if nothing else, are fabulous at holding onto hope.

The text then from my sister saying she was to be put down one recent Saturday jarred and shocked. Death much of the time seems like such an ethereal concept that when put definitively in front of us turns the stomach cold and sets the mind whirring. None of us really want to ponder the finality of our existence and if we do then it seems of some comfort perhaps that ‘the when’ is some vague time in the future. Like Holly we want to live happy, full lives.

Euthanasia is a standard way to ease ‘suffering’ in the animal but not yet the human world- it was probably the nicest thing to do in Holly’s case where she had taken in her demented state to wandering off and may have been run over or unable to remember the way home. I wonder though whose suffering being ‘put down’ (such an odd phrase when you think about it, a put down being a less than flattering comment made to someone) always eases though?- the wallet for certain with vet bills never light in nature and perhaps it’s a way of lessening the grief and burden on the animal owner. Such a timetabled way to die is however, a bizarre concept- not for the pet who has no idea what this final vet’s visit entails. If they did those constant ‘mews’ in the car might be louder and more persistent. For us humans though, knowing a time that something will cease to be alive is weird. Harder still for parents to explain maybe? After all, it seems like an act of killing, of a fashion. Not in general knowing when you or others will die is one of the scariest concepts about death. In our case, more for me really, taking to the photo albums and cataloguing the life of a flat lap cat was a fantastic way to celebrate a feline and pass the time until that lethal overdose.

As death always is at first it was about looking backwards and remembering, rather than looking forwards. Holly had come to us as a pair, her delightful tabby brother Tane was her companion. His life was cut far too short however, at just over six months, being run over in a terrible incident gone wrong of play and ‘child’ rebellion against ‘parental’ command that Holly and I both witnessed. Strangely perhaps, the story of Tane’s gruesome death is one that MissBB has asked me to tell at least weekly for the last year, alongside another equally charming tale of the flea infestation that occurred just after my flatmates and I shifted flats when the two of them were just kittens.

She delights in this story, not because of what happened, but I think as it is part of her way of making sense of the world and of death. Children attempt to understand the world around them from very early ages. It’s approachable to her and I think interesting for her to think that Holly’s way of coping with Tane’s death was then to assume his far cuddlier lap cat persona and to frequently sleep on his grave. A mother’s role in telling such stories to their children to assist them to cope develop emotional skills is possibly an important part of child development as a recent study shows.

P1160606_ed

Children often don’t have a decent understanding of what death entails (for that matter – do any of us?) until about the age of six or seven. MissBB however, seems to already be well on her way to understanding at four. I’ve never been shy about talking with death with her- after all just over a year after she was born we were devastated by an earthquake here where 185-odd people tragically died and my response to that was to pound the pavements, view the devastation and pay my respects in order to be able to deal with the earthquake aftermath.

Lately, she’s been quite fixated with death and that’s led to some heart-breaking conversations. Having just turned four, she spent a couple of weeks becoming inconsolable when considering her future. The thought of heading to school and turning five brought her to shoulder-heaving sobs. The reason? That turning five and hence school-ward bound meant she was “getting older and when you get older you die”. And she really, really doesn’t want to die, like most of us. Of course to a four year old, another year is a huge degree of aging and to her that spelt imminent death.

Explaining to a four year old that you absolutely wanted them to and hoped that they would live a long happy life and reach 100 at least wasn’t without tears for the teller, but I was aware too that with no omnipotent powers I couldn’t make complete assurances about her future, leaving me pondering the What-if’s no parent want to contemplate. In terms of a book that deals with Death in such a gracious, respectful and indeed beautiful way for children I can highly recommend Duck, Death and the Tulip. It’s a difficult book for adults to read to children and not one I can read without giant lumps in my throat but it does the job well.

Just as the working year at university was about to wind up, there was another shock- the terribly tragic and bizarrely cruel death of my boss’s animal-loving wife when they hit a stray horse driving home from a Christmas function. My way of dealing with this news was to pick some wild elderflowers on the way home and stop with my daughter to lay them on the accident site (in other words tackling it head-on- regrettably not the best phrase to use in this situation but it’s the best to sum up my coping strategies). This was an act MissBB was intent on participating in with many questions, many of them focussed on where the horse went to and why it still wasn’t at the scene. Most of my department headed to the funeral a few days later on a blazing hot day where many had to stand outside, probably skin burning listening to a very long life celebration. I barely knew her, having met her only a couple of times, but she sounded like a fascinating women and most of all an incredible mother to her daughters. I found myself watching the photos flick over on a screen that followed the diverse speeches, suddenly filled with emotion.

The upwelling wasn’t so much about the loss of a life, although naturally this saddened me greatly, but the watery eyes and feelings were about considering my own legacy as a mother. Funerals are all about a reflection on a life but they are also often a window into our own soul, provoking and promoting philosophical thought on our own existence. How did I want to be remembered by my daughter? What sort of mother did I want myself to be talked about? I hope one considered to have always done the absolute best for the most beautiful gift bestowed on me, one to have dished out unconditional love and more hugs, kisses and cuddles than is nearly possible to fit into a lifetime, to have nurtured in every sense of the word, to have been a staunch advocate for my child, a mother that taught fantastic values, inspired, imparted knowledge and a great love for the planet, its inhabitants and respect for anything that lives, including other humans. A mother that could demonstrate forgiveness and one that could apologise and also admit their own ignorance. A mother that wasn’t afraid to continue to learn or to listen. A mother that told the best stories, was fun, danced. A mother that was kind, encouraging, full of praise, gratitude and respect. The list goes on.

Not that I wanted to contemplate my death or the fervent hope that MissBB outlives me as children should. This is one of the sad realities for most parents- never getting to see the full potential of their children’s lives. Thoughts of either make me feel sick. Just two days later though the opportunity to converse with Death (like Duck, Death and the Tulip) hit in the shape of a health scare. I found a mole on my back, which at first I wasn’t sure had even been there before, that had changed suddenly- got bigger, turned multi-coloured and ugly.

My mother had had a melanoma on her leg twenty years ago and in a panic had sent me off to the doctor to have all my moles removed- all 15 of them, so I was ‘safe’. Then I discovered like her I form ugly keloid scars. In the meantime though, despite the war wounds, more moles grew- not many, but this suspicious mole was one of them. Perhaps it was all the build-up of the other deaths, but the thought I could have cancer sent me into a complete panic. I felt twisted in knots, even more so when I read some things on the internet, like all of us do, and combined it with my existing knowledge. The dangerous territory of self-diagnosis and the blurring of the lines between that and truly being informed.

It was the weekend and no chance to get a doctor to look at it until Monday. I couldn’t sleep or eat properly. I found it difficult to function and it was impossible to hide my state from my daughter who saw me alternating between some form of despair to a fighting resilience. I sometimes engaged in private conversations with my mole – “I am going to be around for my daughter- she needs me and for a long time yet- so you can f*** off”. Family members who I got to look at the mole affirmed that it didn’t look good, which just heightened my worry although two days later it wasn’t as bad as when I first noticed it and it looked like I had been scratching around it with some small scabs around the area, which left my husband and I wondering whether it was just trauma. I would normally consider myself a pretty strong person (and I think my friends would too) but the thought of dealing with the big C left me weak at the knees initially before I started to calm down a bit and attempt to find my resilience. The best person to help me with that?- MissBB “Don’t worry Mama- you’re going to be ok”.

She didn’t want to come with me to the doctor because she didn’t want to see them cut the mole out so unusually I went totally alone and my cortisol response went through the roof. Pondering my future and what I would do if it was cancer was unquestionably terrifying. What could be the future of a girl that like any child needs maternal and paternal care? Cancer to me has always seemed a totally terrifying, insidious and horrible disease. As it turned out I got myself into a state about nothing at all except trauma done to my mole, which made it look bad- I must have knocked it somehow. It’s had a few spin-off effects though in the come-down on the other side. I’ll be ever so more vigilant about my skin in the wake of this. I also have just the smallest insight into what it is like to be a parent diagnosed with something like cancer and I can tell you it ain’t pretty. I have full respect and empathy for those in this situation. People like the very brave Jennifer Dooblah who chose to stop treatment for her aggressive breast cancer when she found out she was surprisingly pregnant with her third child and has just delivered a healthy baby, only six weeks premature.

It was fascinating too reflecting on my response and noting how since becoming a mother consideration of death was now largely centred on my role as a parent and the needs of my child. It got me wondering about those that are diagnosed with a potentially terminal illness such as cancer and wondering how much do parents actually fight to stay alive? Thinking about my own reaction, I thought that perhaps that those who have children might fight harder than childless adults, which may be reflected in higher survival rates in the former. Either that, or the exhaustion of parenting may see them with little energy left to combat their disease. My money is on the former, but I took to searching the literature to see what I could find out. Anecdoctal evidence from stories of friends and relatives provided some support for my hypothesis. And Dooblah’s story itself suggests similar: “Because she wasn’t having treatment, her condition worsened and at 22 weeks, she was given six weeks to live.”I was getting ready to die,” she says, matter of factly. “We were getting everything ready for the funeral and I was getting ready to die. The family and doctors met to discuss what to do. For Matthias to be born healthy, she was told she would need to make it to 28 weeks. She decided to start chemotherapy again…. “You can’t just kill a baby””.

Surprisingly, for perhaps such an obvious thing to assess there is very little that I could find in my searches, although if others know of studies not listed below, I’d love to see them. Most of what I could find actually relates to parents of children who have had cancer and not the other way round. I have also found some fascinating health differences between childless adults and parents, which will be the subject of another post.

The first indication my hunch was correct is the finding by Agerbo et al in 2012 that death rates (not just cancer-related but including cancers) are between two to four times as high among childless couples- having children does not shorten your life- in fact the converse. Indeed the early death rate from a variety of causes among childless women was four times that of those who had given birth to their own child and 50% lower in women who adopted. Similar rates were found in males who were childless versus who had become biological parents or adopted. The authors state “Mindful that association is not [the same thing as] causation, our results suggest that the mortality rates are higher in the childless”.

P1160600_ed

Most studies looking at mortality and morbidity do not adequately discriminate between marital status and parenthood. However, a group of researchers (Kendig et al 2007) conducted a thorough analysis of existing literature and then analysed their own data. A consistent literature finding was that ever-married women with no or an only child as well as those with greater or equal to five children have higher all-cause mortality rates than women with two to four children. Overall they found in the literature higher mortality in childless women than those with 1-4 children. For males, they found the lowest all-cause mortality in fathers living with their children and a partner. A Finnish study found that mortality for most cancers and other diseases, accidents and acts of violence were higher among women without children at home versus mothers. Controlling for marital status, employment, occupation, and education did not alter the differences.

Competing hypotheses exist for the health effects of the multiple roles people may occupy (a reality of today’s existence for many). Are children a double burden or double blessing? The role strain hypothesis suggests decreased wellbeing with role overload (too many responsibilities for available time/energy) and role conflict (difficulties involved in attempting to meet competing expectations, irrespective of time pressure). Role overload plus role conflict are proposed to lead to exhaustion, contributing to disease and death. Role accumulation on the other hand suggests increased wellbeing from multiple roles through increases in self-esteem and identity. Hendig found the weight of literature evidence favour the role accumulation hypothesis although there is disagreement from others on this. Their own data showed variability across countries (Australia, Finland and the Netherlands), which may be genuine sociocultural differences or a sampling artefact. There was a general trend towards poorer health in men without children, particularly if they were formerly married with similar, lesser trends for women. Thus, having children may lead to better life outcomes and this could potentially include survival from disease.

For the majority of young cancer sufferers, their illness increases the value they place on parenthood and family ties a study by Schover has found; although having survived cancer they were more prone to being disproportionately anxious about pregnancy causing a cancer recurrence and even more so that their future children would be at high risk for birth defects or cancer. Studies have shown that for women at least, having cancer young and the corresponding infertility that may occur is nearly as painful as the cancer itself- the desire in humans to have families is certainly very strong. It may potentially not be the case for Jennifer Dooblah, although one hopes so, but Schover points out that even for breast cancer, both diagnosis and treatment during pregnancy does not lead to survival outcome differences (when matched on cancer stage and histology results).

How families communicate is vital during the cancer experience as there is obviously a multitude of concerns and worries and yet as Harris outlines (2009) we still don’t understand much about the complex processes of how and why information is transferred during the cancer experience. There’s been scant attention paid to the impact of cancer on fathers – this is especially relevant as father’s roles are evolving and whilst there are many commonalities between men and women when diagnosed with cancer, they have also been shown to experience differences.

Increasing survival in cancer due to medical advances is however, resulting in an increase in psychological problems in patients and their relatives, including in children. When children are the cancer victims, parents exhibit very high rates of post-traumatic stress (PTS) symptoms and PTS disorder, with perhaps unsurprisingly mothers being most affected. When children are bystanders watching affected parents they suffer considerable distress (as I am sure do the affected victims), but Spath et al showed that their emotional adaptation does become significantly more positive over time.

Clinical psychologist Kumari Valentine and Lecturer in the Department of Psychological Medicine, University of Otago, points out that survival may be linked to meaning. Viktor Frankl’s “logotherapy” is based on the premise that when people can make meaning out of what might be negative experiences, their wellbeing is actually enhanced- striving to find meaning is the most motivating force to live. Kumari also alerted me to a theory called Terror Management Theory (TMT), first proposed by Jeff Greenberg, Sheldon Solomon, and Tom Pyszczynski. TMT suggests there is a basic psychological conflict unique to humans, which creates terror, as a result of the desire to live but realisation that death is inevitable. So, whilst we fear and avoid death like other animals, we are conscious that we are mortal. The solution to the conflict is also unique to our species: culture, as cultural values serve to manage our terror of death through giving our life meaning, linking back to Frankls finding meaning strategies.

Kumari says: “We create a cultural world view that makes sense and we get self-esteem (which buffers us against this terror) by living up to this world view. We also do interesting things, consistent with this, when primed with death (e.g., when experimental participants are primed with images of cemeteries, etc). As expected, people hold their world view more strongly (e.g., those who are conservative become even more so) and there is in-grouping/out-grouping (where those part of the world view are viewed favourably in contrast to those who are seen as outsiders).”

Kumari, when presented with my thoughts regarding survival rates in childless vs. parents with cancer replied: “Thus, leaping from the (TMT) theory, I would wonder if, primed with death, we became more “fixed” on our world view (ie.., that children were definitely part of our ingroup/legacy, etc) and we “value” them more”. I think Kumari is likely to be spot on with this idea.

Most of us parents have probably relatively easily, if not devoid of emotion, sorted out our wills and guardianship should we die. How much thought though have you given to how you and your family would truly cope in the face of something like cancer? For those living with their children the odds look like they may sit a little in your favour.

Was I about to die? And if I died now, what would my life have amounted to? There was no way I could answer that. All right then, what was death? Until now I had conceived of sleep as a kind of model for death. I had imagined death as an extension of sleep. A far deeper sleep than ordinary sleep. A sleep devoid of all consciousness. Eternal rest. A total blackout.

But now I wondered if I had been wrong. Perhaps death was a state entirely unlike sleep, something that belonged to a different category altogether- like the deep, endless, wakeful darkness I was seeing now. No, that would be too terrible. If the state of death was not to be a rest for us, then what was going to redeem this imperfect life of ours, so fraught with exhaustion? Finally, though no one knows what death is. Who has truly seen it? No one. Except the ones who are dead. No one living knows what death is like. They can only guess. And the best guess is still a guess. Maybe death is a kind of rest, but reasoning can’t tell us that. The only way to find out what death is is to die. Death can be anything at all.

Sleep, by Haruki Murakami in The Elephant Vanishes.

Advertisements