On Not Managing Grief

The second Christmas since my father died and I feel like all my attempts to manage the situation have come to nothing.  I find myself plunged into grief again.  I realise now that my mistake lay in imagining that I could “manage” the situation in such a way as to avoid experiencing painful emotions because, let’s face it, that’s what I really wanted to achieve, even if I didn’t admit it to myself at the time.

Content note: death, bereavement, grief 

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The Eating Disorder Strikes Back

One of the most difficult things to cope with (and write about) recently has been the resurgence of my eating disordered thinking. I’ve had problems since I was 14 when a bout of binge-eating lead to weight gain which was followed by dieting that quickly turned into anorexia nervosa.  The situation improved spontaneously after I had therapy when I was 17 and I was pretty much OK until I left university when stress triggered off disordered eating again which, by my mid twenties, turned into bulimia nervosa.  I managed to stop that when I was around 27, but continued to exercise compulsively and maintain a low body weight.  This culminated in what I can now admit was really a period of exercise addiction between 2007 and 2008 – of course, at the time I said it was about “health”, not weight, even though I was doing far more exercise than was required to be healthy.

Several factors over the last 12 months have resulted in my gaining what I feel to be an unacceptable amount of weight – these include simple changes like moving closer to work so don’t have a long walk twice a day and not being able to afford a gym membership, as well as more complex factors like Dad’s illness and death which led to erratic eating patterns and my not feeling well enough to do as much exercise as I did in the past.

So, now I find that I haven’t recovered and weight gain of maybe half a stone (I’m not going near a scale!) produces levels of anxiety in me which feel about equivalent to suddenly finding myself in a burning building. The most depressing thing about it has been the destruction of my treasured illusion of recovery by the realisation that all I was really doing was holding off the illness by maintaining a low body weight that felt “safe”.

I am quite stunned by just how bad it is. How can you explain to other people that you really do feel like the most important thing in the world is losing weight? How can you explain that your main worry about your grandmother’s funeral is being under pressure to eat and other people watching you eat?  How can you explain to friends who are heavily into fitness that, although you still care about them, you need to distance yourself from them at the moment because they are triggering the hell out of you? I know it all sounds utterly, utterly irrational to people who don’t have eating disorders, but I suppose that’s the nature of a mental illness.

I’m fortunate that my partner understands, having grown up with an anorexic mother herself.  We’re mainly focussing on reducing the anxiety as much as possible at the moment, but I am reluctantly coming to the conclusion that I probably need more counselling on this issue because, while I’ve had quite a lot of therapy for other problems, I’ve never had any specifically for the eating disorder.

Although this has been a nasty wake-up call, it probably has been necessary and ultimately a good thing for me to realise that I’m not better now that I have time to work on it. I find that there are so many things I want to write about in relation to the experience of having an ED that I’m wondering if it would be a good idea to start a separate blog about it.  I’m not totally decided on this – it would be nice to have an outlet where I could blog whenever something came up, but it might also be too many writing projects.

Bereavement, Self & Capitalism

Another thing bereavement has done for me (and this is no bad thing) is make me really aware of some of the ways in which I’ve constructed my sense of self.  One way I’ve done this over the last 15 years or so is to see myself as very professional, efficient and hard-working person. Other people appreciating these qualities in me makes me feel valuable and important.

Bereavement is helping me let go of this self (at least a bit) because I simply can’t do it at the moment.  I’m completely worn out, physically shaky and feeling unwell, mentally vague, preoccupied and forgetful, struggling to concentrate for more than half-an-hour at a time.  My levels of work productivity have inevitably dropped and the illusion that I had of myself as this energetic, well-organised person who never asked for help has taken a battering.  I’ve had to take a day off work today because I just don’t feel well enough to go into the office. And I’ve realised that I’m going to have to adjust my working practices and ask my colleagues for a bit more support over the next few weeks.  Well, I said I wanted to get rid on my workaholic tendencies and it seems I don’t have much choice about that now.  It’s really made me think about how I value myself and whether I want to carry on valuing myself in that way.

This professional persona is really a reaction to an old script from adolescence in which I was constructed as a lazy, useless sort of person, and an underachiever at school.  As I grew older, I reacted against it by creating this super-efficient persona.   Stories build on stories and it takes work to unravel them all.  The “lazy” persona was nothing more than a reaction to a lot of other stories that got told about me for various reasons – mainly these were stories that enabled people to avoid dealing with the fact that I had depression as a teenager.  I’m really beginning to understand why my counselling course tutor asked us to make a list of all the stories that people tell about us.

But then I caught myself thinking that I’m fortunate to work for an organisation that cuts me a little slack during bereavement.  I was shocked to realise that I’m feeling “lucky” to work for an organisation that doesn’t sack me immediately over a slight drop in productively!  Talk about being conditioned by capitalism.  That’s an appalling situation, but it counts as a privileged position in the UK.  Lots of people have to go to work and try and be productive no matter how terrible they feel because if they don’t go in, they can be sacked and instantly replaced by one of a hundred others waiting for work in the class war that our conservative government is currently attempting to inflame to even greater levels.

Funeral and Aftermath

So Dad’s funeral was really, really hard. It would have been better if we could have had it the week after he died when we were all coping better, but we had to wait three weeks, which is too long.

We told people not to wear black because Dad never liked dark, sombre clothes.  When I was a kid he was always encouraging me to wear brightly coloured clothes, not to much avail, since like a lot of teenagers I tended to think it was a good idea to dress almost entirely in jeans and black t-shirts. He liked the colour red, so for the funeral I wore a red top and my brown velvet jacket – and my jeans, since I think Dad would want us to go as we were and I am a jeans kind of person.

It was a small funeral, about 40 people were at the church and about 20 came on to the crematorium and to the house for refreshments afterwards.  While I know that we were in no condition to handle a big funeral, it also felt kind of wrong that it was so small.  My Dad touched a lot of peoples’ lives and many of them were missing on the day. I felt that more of them should have been there.

The fact that it was a Catholic funeral caused me a lot of pain that I’m only just starting to unravel.  Standing there with my partner in a church that rejects us, that says we are morally disordered people and that our relationship is sinful, I felt totally excluded from the ritual. I also felt terribly conspicuous sitting with Andy in the front row under the gaze of the priest, relatives and random Catholics who’d come in for the service. I felt anger at being made to feel uncomfortable and self-conscious while being comforted by my partner at my own father’s funeral.  We could have just not worried about it, but there would be real consequences for my mother if we’d made ourselves too conspicuous as a lesbian couple and I’ve decided to be sensitive to that as well.  This meant we found ourselves in an oppressive double-bind with no good choices.

It’s always a very strange experience to go back and immerse yourself in something after you’ve left it behind and for me it was hard to see just how bizarre the beliefs I was raised in are. I was particularly disturbed and upset by the denial of death – it rather felt like the entire religion has been created to assuage death anxiety.  Well, most religions try to assuage death anxiety in one way or another, and since human beings are so immensely averse to the idea of death that’s one of the functions religion serves.  However, I really don’t think the Catholic approach is helpful and in many ways I think it actually increases the suffering of the bereaved. The message we were getting at the funeral was:

1. He’s not dead because death doesn’t really exist – denial causes suffering because he is dead and death does exist!

2. We hope that he’s in heaven, but we don’t know if he is and he might not be – causes suffering because it produces fear and anxiety about where the loved one might be.

3. Because we don’t know where he is, we’d better pray for him and offer masses to try to make sure he gets into heaven (you have to pay for the masses obviously) – causes suffering because it puts responsibility on grieving relatives to get loved ones into heaven by doing the right things.  This is potentially guilt-inducing.
I’m sure a lot of Catholics have more sophisticated beliefs about death than this, but it’s pretty much where my relatives and mother’s friends are at and I find it disturbing.

My father was lapsed from Catholicism for years and reverted when he became terminally ill.  I feel that this happened mainly because he hadn’t made the effort to find another spiritual home and when he found himself dying, it was too late to look for something else. The upshot was that the Catholic funeral didn’t feel like my father at all.  He was an anti-authoritarian, non-judgemental man and his spirituality was very much a personal, simple “just me and Jesus” kind of Christianity.  He was a bit of an anarchist, really, who always believed in doing his own thing and I honestly think he would have been much more at home in Quakerism or Unitarianism.

The Catholic funeral also reminded me of my father’s lack of spiritual comfort at the end of his life and this is very painful for me.  I wish it could have been different for him, but for various reasons he couldn’t trust anyone and, ultimately, I think that included distrust of God as well.   It’s interesting that the person who helped my father most when he was dying was an Asian doctor, who he thought was either a Hindu or a Buddhist, and who sat down and talked to him very directly about death.

Andy and I have decided that we’re going to do out own memorial for my father which will involve going to a place that was emotionally significant to him and doing something to memoralise him, such as building a cairn. This will be a place we can return to when we want to remember him.

On Dying: Part 5

Just over a week since Dad’s death and I have sense of unreality. I’m off work and it’s like we’re having a very strange holiday. On one level I feel relieved.  The stress of the last seven months has lifted, but the reality of Dad’s death hasn’t sunk in, so I’m not feeling the stress of that yet.  It doesn’t help that the funeral isn’t until the 1stJune which is heck of a long time in limbo.

At the moment my grief is all about the fact that he suffered so much, both mentally and physically.  I’m grieving seeing him so vulnerable and helpless.  I’m also feeling very shaken up by the experience of actually seeing him die.  His death was as good as we could make it under the circumstances, but it still wasn’t what I would have liked for him. He never accepted the fact that he was dying and he fought it all the way to the end. This denial had a huge impact on us as his family because it controlled everything.  So I’ve been grieving a lot about his illness and the way he died because it was just so fucking sad and traumatic for all of us, but I haven’t even started to think about his actually being gone.

Also, I think I’m waiting for my “real” Dad to come back – not the sick one, the “other” one. His illness changed him a lot and that kind of change in a person allows you to disassociate and psychologically separate them into two figures.  Even while I knew my Dad was ill in the hospice, I still jumped whenever I saw bearded men who looked like him.  I jumped out of my skin the other day when Mum inadvertently sent me a text from his phone.   It’s like there are two Dads – the one that got ill and died and the other one who I last saw in October and who is surely still around somewhere and who I’m expecting to return.

On Dying: Part Four

Warning – this is not a good post to read if you are grieving or have a lot of anxiety about death

The horror stories were flying in thick and fast, “Dad has been hallucinating all weekend on his new meds”, “Dad lost a pint of blood through a haemorrhage from his feet”, “I came home and found the floor covered in blood”.  They did some tests, found that his white blood cell count was dangerously low and scheduled him in for a trip to the hospice for a blood transfusion. Then on Monday two weeks ago tomorrow he had another bleed and had to be rushed to the hospice as an emergency; he should have gone to hospital really, but he insisted and in the end they took him there.  He almost died that night, but pulled through and has been in the hospice ever since.

A couple of weeks ago his consultant told him that they wouldn’t be offering him any more radiotherapy or chemotherapy and that really knocked him psychologically.  Personally, I’ve started to wish that they’d never done the chemo at all because it raised a lot of false hope and unrealistic expectations which have enabled both my parents to stay in denial a lot longer than they might have done otherwise. Even after the “no more treatment meeting”, he was saying things like, “The diagnosis hasn’t changed”. Well no, thank goodness, because if it had, you’d be dead already!  His original diagnosis couldn’t be much worse!

My parents have always been adept at denial and there are good reasons for that tendency in them, but it does make things extra hard on everyone.  It’s hard on the dying person who’s tormented by false hope and doesn’t spend the little time they have left preparing themselves for death.  It’s very hard on the family who have to play along and pretend that what’s happening isn’t really happening.  No matter how hard you try to be realistic you find yourself slipping into denial because you tend to take your lead from the dying person.  Over the last couple of months I’ve found myself thinking things like “maybe he’ll live another few months”, pretending that I can’t see just how badly he’s deteriorated recently.

Andy and I visited him last week and it was very, very difficult.  He finally seemed to have come out of denial, only to move straight into depression.  I was really worried at the time that he might die in a state of depression.  After we left, he sent me some text messages that really upset me saying he knew he was “boring” to visit and implying that he felt like a terrible burden on us all.  I started to dread the text messages, but I didn’t want to dread what might be his last message to me!  And I didn’t want his last message to me to be something that really upset me.

The hardest part for me is that I’ve been feeling terrible angry recently because I want the father I remember back and I’ve been in my own state of denial imagining that he might come back somehow.  My father has always been the kind of person who stays calm in a crisis and helps other people.  Now I see him panic stricken and fixating morbidly on every little problem.

This week I’ve finally come to an acceptance that he’s not coming back as he was, but the person we’re seeing more of now has always been a part of him, just not a part we saw much of before he was ill.   Most of the anger has lifted, but I have felt more emotional and less able to cope as a result, so maybe my anger was actually a defence mechanism sustaining me.

Little things really get to me.  I was walking through town in the beautiful sunshine last week looking at the flowers in the park and it suddenly struck me how hard it must be for my Dad to leave all of this, how one day I will have to take leave of all this.

The terminal illness of someone close shakes you to the core; you lose your sense of security; you are presented with the stark reality of illness and death, with a spectacle of relentless suffering, with just how cruel life can be sometimes.  One of the things that I find most devastating in all this and most hard to think about is the fact that my 96 year-old grandmother, after a life of great hardship, now has to watch her only son die.  It seems so deeply unfair. I can’t help but feel angry about it and think “doesn’t she deserve some peace in her last years?”

It’s certainly made me think about how I would like to prepare for death.  Assuming I don’t get hit by a bus and have some time to prepare, I hope I’ll be able to face it as squarely as possible although really we should always be prepared for death because it can come at any time, but most people are allowed to ignore that fact until age strips them of the illusion.