Focussing on the Invisible: Anxiety and adoration in adversity.
I like to come sit by the ocean when I feel like this. It helps to make my troubles feel small… well, smaller. It bothers me that disability has such a stigma, a conjuring of images and connotations that fit a certain mould. It bothers me the assumptions onlookers convey in their body language. It bothers me that feeling of helplessness, of being alone- the fear of the unknown.
My daughter has an ‘invisible disability’ and although it might not look as though she has struggles, difficulties and restrictions.- she does. It has been an immense battle that has carved me into a person that I don’t always recognise. I feel guarded, sometimes numb… out of touch with reality. I can’t count the number of times people have said to me, “oh, she doesn’t look disabled?!”… or “wow, you would never know that she has been through so much”. But I know. My almost full head of premature grey hair and riverbed wrinkles on my face attest to it!
“I sometimes feel fiercely protective, stubborn, restless, fearful, tired, frustrated, and annoyed. Heavy. ”
Dealing with ‘invisible disabilities’ is complex. It makes you hypersensitive to the outside world, deflective of stranger’s stares and worried about others’ opinions. In a strange way you feel obligated to over-share… to justify… give reason for the things you do and the things you say. So that others can understand. I guess we as a species are wired that way. To overthink and judge based on our set of experiences and circumference of knowledge.
Hand in hand with this absurdity to subconsciously substantiate is that feeling most special needs parents know only too well. ANXIETY.
Wow, what a Bi**h. It is another one of those things that you can’t ‘see’… but boy do you know it is there! When you feel your chest tighten, your throat closing, your tears pool, your stomach knot, your hands shake, your legs weaken, your heart race… Having a child with an ‘invisible disability’ is bloody hard. But I feel grateful to feel enlightened.
Before becoming Emmilou’s mum, I was so naive. I didn’t see the world the way I do now. I was never indifferent, or cruel or overtly judgemental. I just didn’t have any gauge of understanding to know what it felt like to 1) be a parent and 2) to unconditionally love someone so unique. I hadn’t felt real heartache, nor true adoration. I hadn’t had any trauma, nor experienced what it was like to be incredibly proud. I didn’t know what it meant to put on a brave face, or feel otherworldly elation.
Parenthood is a strange but beautiful dichotomy.
All of the most profound emotions are experienced, internalised and externalised in different ways, and just because you can’t see it- does not mean that it is not there.
We all have different abilities, and we all have the ability to be kind, respectful and empathetic.
I think the world is best experienced when you focus on the invisible.
Much love,
