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The Invisible Ghost



When I was a kid, my brother and I played 'superheroes' a lot... my older sibling with his strength and eyeballs that fired laserbeams at pretend villains and me with my invisibility cape and ability to fly. Now we're both adults, my brother has the strength of a good man and I do my absolute best to be invisible. It's not a superpower now though, it's an existence I crave because the world is too daunting and I don't want to be part of it. 

I went swimming a couple of weeks ago, feeling so much hope because I'd got myself out the house and, in water, I feel like I can fly. I know progress is never linear and we all have to expect bumpy areas on-route amongst the smooth ones, but it's tough when you hit terrain you can't seem to get through and you feel like you've failed because of it. I'll always wear my rational head when reassuring a friend of their worth when times are tough, but I'm not one of my friends... I'm someone I hate with every inch of my soul. 

Right now, I've stopped hobbling (or wheeling in my case) along that path and am hiding behind a rock, trying to be as invisible as possible to those around me. I want to be invisible so they'll leave me alone and forget I exist, and I want to hide away from all the people who make demands I'm not physically or emotionally capable of saying 'yes' to anymore. The progressive connective tissue disorder I live with has worsened again, and this time I don't have the mental muscles or medical care needed to adapt. My manual wheelchair has become difficult to propel, I can't afford a powered one, and I'm grieving a new layer of independence lost. All the voluntary ventures I was able to be part of last year are beyond my physical capabilities now, and each time I explain why I can't be part of projects, I face disgruntled people who say I'm letting them down. My paid work has become unmanageable too, especially the journalism and photography part of my job, which is impossible now my body is so fragile, and the design work is tough because sitting up for too long causes rib dislocations and disabling spasms throughout my torso. Then there's the social media role, where I manage the company's Facebook, Twitter and Instagram accounts. I can fulfil these duties laying down if needs be, but my god, all the toxic cruelty and narcissism on these platforms is incredibly triggering... and having to be 'on tap' for message replies and post threads isn't easy when pain and medications make it difficult to stay awake. My lovely husband, who I adore, has been unable to contribute a wage over the last four years since starting his own travel company, so my earnings are essential if we want to pay our rent and bills, so I can't reduce my hours at work. I just have to carry on, regardless of the pain, injuries and triggering social media visits, and hope I don't end up breaking completely.

Typing all that out sure does make me look like a pessimist. I've spent 43 years of my life looking on the bright side, even when life gets tough, but everything has become overwhelming and I'm not able to face it with a smile this time. Others around me can't understand why I'm not the bubbly gal who gives her time and smiles through adversity any more, and pretty much all of them have either disappeared because I can't give them what they want, or continue to nag and pester with a delusional belief that 'I'll feel better next week', or pile guilt on for not being there for them.

It all looks pretty dark and dismal, which I''m not too comfortable with, but typing it all out gives me a clearer picture of why I crave being invisible. In a lot of ways, I've been invisible when I don't want to be. Sometimes I crave feeling like I might matter to people, regardless of whether I can 'give' or not. I don't want to be disposable when I'm not capable of giving my time or contributing a skill. But unfortunately, I'm finding out that I am. I've lost so much mobility, confidence and self-worth over the last year, I feel like a ghost of myself. This invisible ghost, who no one sees or believes in, is happy to lose the demanding folk... but hopes she doesn't frighten and cause distress to those who do see and believe in her. She hopes she can rest in peace when she needs to and maybe, one day, have a powered wheelchair, confidence and self-worth, a husband who can contribute a wage, an easier time at work, friends who give a shit and the ability to move through life without pushing everyone away and hiding behind rocks. 

Edited by LisaButterfly

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I see you, butterfly 🦋, and I feel your pain. The pain of what has been lost, the pain of facing current loses, and the pain of acknowledging potential future losses. It is a lot and I am grieving here with you. Your writing shines a light on the beautiful soul you are.

The ability to acknowledge the extent of pain and difficulty is so stinking hard. You are facing the hard things, reaching out for support as you can, and doing your best. In my book, that is gold. You don’t find many people in the world that do those things and you are, as you can, in the midst of significant difficulties.

But even if others may not value or recognize your worth, you are worthy of love, acceptance, and support. I am so sorry that you have less mobility and for all the things lost because of it. I am sorry that you are having difficulty with work and the stress that this brings and the pressure you are under to support your family.

There have been distinct times in my life where the terrain feels impossible to navigate and I don’t know how I’ll get to the other side. Usually this has been a major loss in more than one area of my life, or in more recent time, facing the trauma and losses from my past plus current life challenges. I also relate to having better clarity when I write things out and when I reach out for healthy support.

We are surviving, step by step, and we are not in this alone. Thinking of you today.

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