Ah, every time I sit down to work over the past few years, my head doesn’t know where to begin. When your head is in a muddle, it can feel beyond frustrating, especially as a creative, to not have the energy or capacity to produce and work.
I understand that this is a season of my life, but it doesn’t stop me from feeling as though I’m watching my career slide away from me. Under the weight of my own health issues and parent carer responsibilities. It’s beyond frustrating as someone who has attached their identity and their capability as a disabled person to what I can achieve, despite my short stature.
Yet, when I take an overview of the season that I am in now, I realise that it is that – a season. To support and improve my health. To advocate in another way – as a parent carer, to experience another aspect of life – that has softened and strengthened me in equal measure. My confidence has nose-dived for the best part of a decade, more so in the latter half.
I wonder where it went? The thing with attaching identity and confidence to work is that it is often measurable. Whether that’s building a website or the impact a piece of work or participatory workshop can have on the participants and the wider community. Personally, it made me feel like I was making a difference and impact in this world. Until… I no longer had the capacity to deliver; such were the circumstances.
Sometimes – you just have to go through the hard times
Yep, hate to break it to you, but yes, we all have hard times in this life. Life can feel especially unfair when you have a disability that can impact all areas of your life. Dealing with day-to-day or unrelated life events that throw you curveballs feels like an extra weight to bear. Yet, none of us gets a free pass. We can theorise that our Dwarfism challenges prepare us for life’s challenges, but I’m not convinced. It all ends up compounding until you end up burned out. In my case, I was severely burned out and in hospital for a scary bout of pneumonia and a three-year recovery period that had me questioning many areas of my life.
Some years and decades, the punches just keep rolling. You deal with them with the capacity you have. For me, I’ve gone quiet, isolated myself in many ways as I (we) get through each day. Or because I am overwhelmed and in survival mode. I had 60 medical and health-related appointments in 2025, on top of my daughter’s 20-plus education, health and medical appointments, along with the running around that goes with managing and caring for a child with Type 1 Diabetes. Then there was further family estrangement, dealing with more family burnout while waiting for further assessments.
It’s no wonder I have been exhausted.
When You Feel Constantly Angry
We live in a world where we are used to quickness these days.
Our shopping and food can be delivered next day or within the hour, along with the other benefits that online services can bring.
Yet, life, and dare I say, healing is not.
We expect our bodies and minds to bounce back quickly when we have faced (multiple) traumas or illnesses. Our society wants us back working as soon as possible. Yet, the body heals and grieves when it feels safe to do so and on its own clock. There is no longer time nor facility to convalesce.
We go through these times, times of railing at the world, when it feels like it’s one crisis after another. There is no guidebook – and I wish there was. On how to breathe through the pain, and how to deal with constant stress that leaves you feeling wired 100% of the time.
How to deal with resentment when it feels like you have been abandoned, and you and your family are stuck in the perilously long waiting lists (that you know will offer little to no support at the end). When relationships go south, when ideological beliefs clash, leaving you bereft of disappointment and clueless as to how to deal with the impact.
You wonder – what the hell… more with a sigh of resignation and exhaustion.
But a response does bubble away underneath the exhaustion. The longing to change circumstances for the better for you and your family. The shoots of indignation of being treated poorly and unfairly, without thought.
“Anger itself moves worlds” – Alanis Morissette.
And then, a video clip with Alanis Morissette that came through my feed reminded me of something important. Something that had given the momentum for the You’re Just Little exhibition that happened eight years ago this year. It vocalised what I had forgotten in the thick of being worn down by life.
Anger, and more so how to use it. Alanis taught a generation of us young girls in the 90s how to be angry.
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And I realised, of late, that I have been angry, very angry, but I have been at a loss as to how to use it in such a way that was meaningful to me.
Then I remembered the quote, often attributed to C.S. Lewis, but who didn’t actually write it: “I sat with my anger long enough until she told me her real name was grief”.
And then that’s when I realised – I have and am going through a protracted period of, a heck of a long period, of grief.
Acknowledging Grief
Grief at how our lives changed when an autoimmune disease rocked up to our family over five years ago.
Grief that my child will have to deal with this lifelong condition and knowing how wearing the relentless challenges that poses.
Grief over family and friend relationships that have disappeared (and the fallout from these) over the past decade.
Grief over the decline in my own health and new health challenges presenting themselves. Menopause. Health and medical-related trauma over a lifetime.
Grief over waiting lists.
Grief at the number of medical and health-related issues and many appointments that have impacted my career, my own ability to deliver and my ability to be consistent in my attendance to be employable.
Grief over the lack of support.
Grief when seeing peers being successful, where my life became smaller because of…
Grief over the circumstances that led to firefighting days rather than living them.
Lately, I feel like I am beginning to gain clarity and the chance to literally breathe well and properly…
And I’m wondering how, and if I will ever again, have the energy to turn anger into something positive.
Let’s see.