Friday, 4 July 2014

So I’m Dead… : Part two: Dying – I’m already dead



        A graceful exit.

I imagine it’s what we all want, to die gently in our sleep. Or perhaps spontaneous natural death; one minute you’re there and the next you are not, no medical explanation. Like someone reached over and flicked your off switch. In reality very few of us get to go this way.

Some feel I’m morbid thinking about my death, as if I’m wishing it apon myself. Others think it’s understandable given that I’m chronically ill, when in reality I’m no closer to death than anyone else. Being chronically ill does however make the impermanence of health and life all that more acutely obvious to me. I have heard the Buddhist concepts of non attachment and impermanence expressed as the ‘glass is already broken‘ (forgive me for I can’t remember where or by whom) and so my ‘goal’ in contemplating my death is  ‘I’m already dead’.

The sciencey bit

The process of dying is well documented from the scientific observer and palliative care perspective. It starts along time before the final moments. And when I read the ‘sighs that your loved one maybe dying’ I realise I’m all ready there. Chronic illness certainly is it’s own unique form of limbo. And so, I guess my point of concentration (having read a few of these descriptions now) is the process of active dying.

There are some outward signs that these systems are slowing down. The person will begin sleeping more to conserve the little energy that's left. When that energy is gone, the individual may lose the desire to eat and then to drink. Swallowing becomes difficult and the mouth gets very dry, so forcing the person to eat or drink could cause choking. The dying person loses bladder and bowel control, but accidents will occur less frequently as those gastrointestinal functions shut down as well and he or she consumes less.

Any pain that the dying person feels at this point can usually be managed by a doctor in some way, but it can be unbelievably difficult to watch these final steps of a person's life. The stage right before a person dies is called the agonal phase. The dying person is often disoriented, and it will seem like he or she can't get comfortable. It will also seem, disconcertingly, that the person can't catch a breath. There may be agonizing pauses between loud, labored breaths. If there is fluid built up in the lungs, then that congestion will cause a sound known as the death rattle. As the cells inside a person lose their connections, the person may start convulsing or having muscle spasms.” from How Stuff Works

As the dying person

But perhaps that doesn’t let us in on the emotive side or that tricky first person perspective. Will I be consumed with fear? Will I be able to be open to the experience?  Will I worry about those things left unsaid or not done? Will I be surrounded by loved ones, with a complete stranger, or alone? In thinking about these things, considering my options, am I being prepared or grasping at a fake sense of control? 

And then there is this song that pretty much sums it up for me…


Hope There's Someone by Antony and the Johnsons


Followed closely by this art work, Breath by artist Phil Dadson. When I first saw this work installed in an art gallery I was transfixed, left standing watching as others came and went.


But what about me, what do I think I want…

I have never been present for a human death, I have been there several times near the end but have never had the honour of being there at the end.  That’s how I see it, an honour.  Like the honour of being present at a birth, there is honour in bearing witness to a death. I do wonder who will bear witness to my passing? But I also understand that ultimately you do it by yourself. If I am alone so be it, but if you love me and feel you are able to be there in the moment with me you are welcome and I will never think less of you if you cannot be.

I know that I want to be as present as possible when I die. I don’t want to be pumped full of medications to the point of not being conscious. This maybe hard for anyone around me, as I know how distressing it can feel to watch someone in what appears to be pain and unrest while dealing with your own grief. I have no real way of knowing what is going on for those dying, perhaps the stories of those that have had near death experiences or even the amazing story of stroke suffer and neuroanatomist Jill Bolte Taylor  can shed light on what it might be like. Personally, I suspect from my own adventures, if the pain becomes too bad I will loose consciousness by myself. I’m not saying I won’t take a little light relief though :)

I would like to go quickly but I know that there is a chance that I will drown slowly. The lymphatic nature of my disease can mean you get a build up of excessive amounts of lymphatic fluid in the lungs which finally becomes too much. I know this will be very unpleasant for anyone watching. I will understand if you can’t be there. Personally, not breathing properly I find quite distressing. Mostly because between asthma and this disease, which every now and then gives me breathing difficulties, I know how hard it is to remain calm when your body is fighting for air. My hope is that near the end I will find that calmness. I guess it’s time to start practicing now.

I know that I am very happy to go into palliative care. I have no romantic notions about dying at home. I don’t want to make life harder for anyone by insisting on being at home (that and chances are I will never own my own home). I want those I love to be looked after as well as myself in those last days and that is what good palliative care is all about, they are the ‘midwives of death’ there for you and your witnesses.

In summary I know I want to have a good death. I know I want to die quickly but I plan to be as prepared as possible for a long drawn out death.

Things I like: about death

All the links above and these...
This story by Nancy Updike from the This American Life podcast, episode 523 : Death and Taxes
This conversation with Roshi Joan Halifax about the painful truths of death and the impermanence of life.
This Book Graceful Exits: How great beings die (death stories of Hindu, Tibetan Buddhist, and Zen masters) compiled by Sushila Blackman (seriously amazing book)


Love B xox

P.s. Here is a link to part on of this series if you haven't read it already :)

So I’m Dead… : Part one: in which I explain stuff and things

365 Feminist Selfie: June

I continue to be amazed by this transformative process....
































This months artist is fashion blogger Meagan Kerr. In her project Fat Girls Shouldn't Wear Stripes she photographs fabulous woman breaking the many contradictory rules of fashion that society pushes on fat women.


love B xox


Friday, 6 June 2014

365 Feminist Selfie: April and May


Three months and counting.  April and May have gone by so fast and I have been… 
   
         well, in truth I have been in an unmotivated slump. Procrastinating over the smallest things. When I examine the why’s of it, I can see there have been a lot of little things that have popped up and gotten in the way of the extraordinary, strapping me firmly to the mundane. I’m not try to find excuses, just attempting to be kind to myself. Every now and then when you are chronically ill you just have to say “Hey now, it’s ok. You are chronically ill and things are just not going to get done for a while”.

When you’re sick even the smallest of medical interventions can set you back from life and leave you just handling the basic functions of day-to-day living or even leave you in bed for weeks. The dentist is one of those for me. For most, it’s at worst slightly unpleasant experience that perhaps leaves you a bit bruised for a day if you have something minor like a filling. For me anything with needles, trauma (even mild trauma) of any kind and especially anything that involves anesthetic can leave me in flare for a week or more and that is what has been happening in my world. Once I’m in flare my immune system is struggling more than normal and so now I have a cold on top of it all. But back to the 365 feminist selfie…

What I never expected about this project is how much I would enjoy this process. Something i can manage each day even if it is from bed. I also never expected to see how invisible my illness is, even on my worst days.

April

































May




































Artist of the month…
It has been hard to find others with daily practice who's work is on the net. So I have broadened my scope to self portraiture.

Elle Muliarchyk creates fabulous self portraits in designer store dressing rooms. It’s well worth checking out the rest of her portfolio of work too. 

Enjoy

Love B xox