Death of Identity
I know this usually a paid subscriber post but I feel it’s such an important issue I wanted to share with everyone.
I have talked of the grief that is a part of chronic illness largely undiscussed and wanted to devote some pages of the book to this, here is a brief overview. As it is technically ‘my story’ I’ll tell it from my perspective but do please jump in at the end with your experiences! Obviously this is early draft stuff so excuse it’s unpolished nature xxx
When did I stop being Emma?
I know I am not Emma now, but was it a gradual thing or a bom-bam-bosh? Grief has clouded my memory and judgment, so I simply don’t know.
And that’s sad, too.
There is a strange thing in our experience as humans than holds on to the belief that if we can pinpoint something then we have control over it.
I don’t know if this has come about because of the manner in which science deals with problems. Or if it’s more primitive, more reactive - the snake bites = whack it with a club.
Either way, there is comfort perhaps, in knowing that xy or z happened at this moment. So what happens when the event isn’t a single moment?
We start to lose some sense of ourselves. We can’t definitively state that we changed even though we know we have changed. We become not only different but untethered from time and situation.
I started losing time with Parkinson’s before I was diagnosed. As my physical pain mounted my inner self drifted further from the familiar Emma. It started looking, shaping and becoming this new Emma. This new Emma who lacked acuity, who fell down stairs, who couldn’t absorb life’s knocks any more. The inner became obsessed with trying to work out who this stranger was, an invader even.
Time slipped. Then suddenly I realise I’ve lost 5 maybe 10 years to trying to figure out who the hell is this Emma?
Anyone who has experienced grief will tell you that time changes. Days seem at once longer and shorter to the point of irrelevance. And this was the beginning of the grief for me as the impact of becoming a person with Parkinson’s spread.
They say grief happens in stages, for death I think that’s true. For chronic illness we have to be careful tying this to death. It is too easy for society to discount us, too easy to act as if we are no longer of the living. How very convenient it is if we don’t feature and just act as little ghosts.
This grief is an active beast. It circles, lashing its tail, waiting to strike out as we attempt normality, and often fail. We fail partly because it takes time to grow the new skills of adaption. And partly because the systems of support aren’t always available or suitable. Somedays I escape the jaws of loss as I conquer an obstacle and somedays I am devoured as the pain and helplessness win.
Parkinson’s loves to add another spice into the mix by being unpredictable. What was achievable one day is absolutely not the next. What works for one person, may not for another.
It’s cruel. That cruelty is a lonely, isolated and vicious thing.
Science wants us to be logical and clinical about the disease, of course, that is correct. The disease has no malicious intent, it’s just what it is.
But it isn’t how it feels.
The sense that you are under attack and a disease or condition has got it out for you is another form of grief. This, I believe, is one of the toughest forms - self-pity.
That term is loaded with guilt, blame and stigma. But we should be allowed to experience self-pity. God knows, sympathy can be thin on the ground from medical services, society and even loved ones. I feel pity for all that I have lost. I feel pity that I will never be the parent, partner, friend I wanted to be. Is that ‘playing the victim’ as Wikipedia defines it? Or is it that I am the victim?
As stated ad nauseam, grief is a series of stages and this too passes and comes round again and passes, the ebb and flow of grief in chronic illness.
Grief is a little akin to an involuntary declutter. You are initially numb and in awe at the open space. But then you are at a loss as to what to do in this vastness. In time you fill it again with new items and ways of doing things. There is still a part of you who misses the old clutter but you acknowledge that it can never be the same again.
And that is why the grief doesn’t leave. Chronic illness by its very nature, declines and degenerates. The grief will renew as more is taken from us and our identity.
Thanks for letting me invade your inbox!
with love
E xx
I dealt with most of the shock and grief, at the beginning, by being angry. As time passed, and I realised I wasn't going back to my old life any time soon, I also realised that I couldn't just be Angry All The Time , and that I missed the range of emotions I used to feel just as much as the things I used to do, and places I used to go.
It's been such a long road gradually moving from one set of emotions - well, one emotion, really - to another, and a lot of that anger came back to me with the pandemic. I was told that I was one of the acceptable casualties, who could be lost without society noticing. This was a different anger, though, a motivating one instead of a stagnating one. I met (online, mostly) so many people who knew exactly how I felt, and the anger became healing and restorative.
I still grieve my old job (even after 27 years), the loss of friends who got fed up of the effort required in order to spend time with me, and I *really* miss spontaneity! Going out of the flat now requires planning with near-military precision. But I can also see now the experiences and knowledge which would never have been part of my life if I had not collapsed on Thursday, September 13, 1997. I think the fact that I still remember the date everything changed may be a hint to myself that, even though I've come a long way, I still have a way to go...
Wow, where to begin? As usual, Emma is profound, specifically herself and at the same time touches on some universal truths about mourning the loss of self in chronic illness. She is our chronicler , our troubadour of this aspect of the human condition that is rarely discussed. If she is a new Emma, maybe we with chronic illness are almost a new sort of human. Anyhow …. Get this woman a TED talk. (I’m serious!)