Ghost of my former self

Where Emma explores loss after diagnosis of a chronic illness

Hello! Lovely to be back in your inbox after a wee break.

Having had to retire from my illustrious naval career due to Parkinson’s I wanted to talk about loss…

OK. I have never been in the Royal Navy - can’t abide rum and look terrible in navy blue. It was all a dream. Another of those hallucinogenic experiences that leave you questioning reality for several hours after waking. Thanks, Mr P.

It leads me to ponder (EmmaPonders™) what loss of our health to a chronic illness means.

The perception we are robbed of our normalcy and vitality is challenging. It throws into the ring two major issues. Firstly, it reinforces the stereotyped normal body vs the defectiveness of an ill or disabled body. Secondly, it contests our right to grieve our loss.

Loss implies we are incomplete, vulnerable and unable to assimilate into the social ideal. Without a functioning body, this ideal becomes unattainable.

This ‘loss’ via illness is socially and politically defiant, possibly unsanctioned. When someone dies the protocol is clear. When someone loses their job, position or income it is clear. When someone gets ill with a curable disease they are forgiven and reintegrated into society. But when someone loses function and continues to do so - well that is a problem.

Grieving when no-one knows what the ‘rules’ are is uncomfortable. Society struggles to know how to react and governments shun the perceived ‘burden’. Subsequently, post-diagnosis we can be denied the support and time to grieve. This leads to an inability to express emotions such as rage and the mobilisation that can arise from it. Chronic illness puts us in a holding pattern of suspended grief, anger, loss, regret. Cultural stereotypes cluster suffocating the expression of emotional vulnerability. As result, we maintain the person who we should be or used to be as opposed to the person we are now.

By obfuscating our experience we become the sole custodians of our loss. Our lives and relationships get reshaped by the social imperative for us to be humble, grateful and unassertive.

Frequently I find myself reassuring others as if it is me who has brought them the bad news. What we need is to trust that others will not be overwhelmed with our feelings. But when your children or partner is struggling to come to terms is hard not to smile and say you are ok. If I laugh and make flippant acceptance of the disease others will be more comfortable. The difficulty is this can lead to seeking refuge within.

After any traumatic loss, we need to reorganise our life story. To encompass this new reality we need to be allowed to release the ghost of the former self. Allowing a new life narrative to be created leading us to move forward.

A societal change could make this process much more natural and empowering. Normalising disability and illness would be a good start. More ramps, bigger loos, railings etc (seriously, how many able-bodied folks injure themselves on stairs every year?!) These things can benefit everyone instead of capitalist ‘make money from every square inch’ thinking.

Speaking as someone with Parkinson’s I can assure you that slow-moving through the world is far healthier. You have time to enjoy the scenery and chat with people when stopping to rest or wait for Mr P to co-operate. I’m not denying it’s a shitshow at times but it doesn’t have to be made harder by an unforgiving society.

It’s been 4 years since I was officially diagnosed. Am I still grieving? Oh hell yeah. But I am growing into this new me. I’m learning how to adapt, how to be kind to myself, and how to swear loudly when Parkinson’s gets too much of a bastard.

With love

Emma xxx

P.S I love reading your thoughts drop me an email :)