Hello, Little Lady blog hasn’t had much investment over the past few years. We’ve had the pandemic, our daughter being diagnosed with Type 1 diabetes in 2021, and then a long recovery period after being hospitalised with pneumonia earlier this year. You can see why it has felt like a lost 12 months and much longer, really.
The time needed, let alone the energy to have the will to write, has been very much lacking. My world, my family’s world, has been rocked to the core, and the impact of the above events cannot be underestimated.
In the past three years I (we) have had to face some of our worst fears. My darling girl now has a lifelong, life-threatening autoimmune disease. We are still finding feet with the day-to-day care and management that is 24/7/365 and comes with no respite. The diagnosis has caused immense stress – not only with getting to grips with the medical aspect but also with the emotional fallout and grief from what happened.
So, 2023 is the missing year. Because I guess from a career perspective, I’ve been mostly missing in action.
The beginning of the year was a completely different story. I was on the way to finishing my New Encounters spoken word pieces from the Sunderland Culture bursary. I was hired to work on a project as an assistant artist for a writing project in Teesside and had been asked to interview the powerhouse Vici Wreford Sinnott for the Disability Arts Online magazine “Disability And…” Podcast. I travelled to London to visit Live Art Development Agency as part of my DYCP.
Behind the scenes, my health was declining. I’d been having trouble breathing for over a year. Before I was meant to perform my spoken word piece for the Twoomph online event by Tees Women Poets in March – my GP told me I had potential heart failure. My stress levels were through the roof from trying to balance freelance work, Type 1 Diabetes care and dealing with the local council, who very royally messed up my daughter’s secondary school application. The latter, I thought, was about to finish me off.
“I’m having trouble breathing”, I said to my GP after they confirmed I wasn’t in heart failure and said we’d look at that next time. A fortnight later, the night before Good Friday, I was taken to my A&E with O2 levels of 92 and dropping, which culminated in a week’s stay in the hospital for pneumonia. Being asked how I would like to die still keeps me awake at night.
Mix in early menopause and a diagnosis of Type 2 diabetes, along with fighting for support for my daughter’s other emerging additional needs, I’ve not known where my head is for the majority of these past 12 months. Healthwise, it has been a slow recovery; pulmonary rehabilitation is a godsend, and I feel a ton better with being able to breathe more easily once again. Thankfully, I’m still here to tell the tale.
I remember ruminating at the beginning of the year that I wanted to learn more about myself. The way it happened wasn’t quite what I had in mind.
Being thoroughly burnout
The main lesson of 2023 has been quite profound – that I am thoroughly burnt out.
Physically, mentally, and spiritually, with pushing and pushing career-wise and in life. The impact of estrangement, the pandemic, the impact of benefit reform, my own health issues and my daughter’s has felt like a never-ending boxing match.
A crisis of faith in my voice, my work and my place within a poorly funded and even more competitive sector has taken its toll.
I fell into the world of art and activism. It’s given me a voice and a platform to channel my thoughts and ideas beyond what I could have imagined. Yet the last five years have been some of my life’s most stressful, isolating and financially difficult. The arts sector in the U.K. is not in a good place, and it’s increasingly difficult to find opportunities or funding. Success, I’ve found, brings peer resentment.
One of the more telling moments was when I sat in a room with fellow freelancers with the chairman of Arts Council England over the summer, who was there to listen to our experiences of the increasing difficulties we have working for our communities. The scale of the problems we face hit me. I wasn’t alone in the frustrations felt or looking around and wondering why so much is expected of us for so little. I came away feeling incredibly sad about the art that isn’t being made in this country.
Ignore Your Health At Your Peril
One of the biggest lessons in 2023 is that health is very important, and you ignore it at your peril. The events of these past twelve months have forced me to address my own internalised ableism and the need always to be doing and achieving to find validation. Ableism and the people who hang onto that won’t be sitting around your hospital bed or visiting you when you are recovering.
More surprisingly, I’ve learnt that not all friendships are equal or are actually friendships at all. It’s okay also to be the one who determines that for peace of mind.
Resting is not quitting
Being 4ft 4”, you realise fairly quickly you have to prove your ability in a world that writes you off because of your height. Becoming very poorly has made me, well to some degree, realise that rest is imperative even if it’s not always possible when you care for an additional needs child.
I’ve been on the go for a very long time. There has been a lot to contend with. Sometimes, I’m amazed that I’m still standing after what I have been through. But I am.
I’m hoping that one day, I will be able to look back and really take in the enormity of the experiences I’ve been through without feeling like I could have done so many things better.
For now though, it’s ok to take stock of all the horrible experiences and find a way through them. I don’t have to pretend everything is okay. I can be and feel angry at situations and people who have let me down and be frustrated at the cul-de-sacs I feel I’ve wandered down.
Sometimes, the perceived reduction of options in life sets you on the path of freedom. Rest is not quitting. It lets you take stock and determine where you want to go next, even if that is scary.
Exercise doesn’t have to mean going to the Gym.
Exercise and I have never been friends. Mix Dwarfism, hypermobility, usually too big equipment and social anxiety meant I was never going to become a gym bunny.
I’m still not, but I’m nearly six weeks into pulmonary rehabilitation and for the first time in a long time, I’m enjoying moving my body. My breathing is better, my mood is brighter and for the first time, exercise seems something manageable. I dare say I’m actually enjoying it. Talking therapies help, too.
2023 – The Year of Personal Growth?
I guess if one were to be philosophical about 2023 – it hasn’t been a missing year; it’s been a year of personal growth. I have had the chance to get to know myself better, and not just through the career lens I’ve relied on for the best part of two and a bit decades. I am resilient and a fighter, but I now know I have my limits and that needs to be respected. I’m not superhuman, and I need to work on asking for help and support.
My own disability life experiences certainly lend themselves to fighting for access to services and support for my daughter’s ongoing additional needs.
The year has given me the space to really consider if the path I find myself on is the one for me. I’m tired of going places and seeing people within the sector ignore me as I walk into the room. I’m tired of chasing freelance commissions that leave me with no energy for my own practice. There has not been much time or space for exploring the Dwarfism lived experience this year. Health and parenting have been the focal points. The creative activist in me needed the break.
I can’t even think about ‘what next’ yet
I’ve felt an incredible sense of sadness, anger and grief for the impact of what life is for me now, and I’m still making sense of what that is. Facing your own mortality certainly puts life’s travails and people’s behaviour into clear perspective.
I’ve realised you can be simultaneously grateful for the support you’ve received yet be frustrated at the way that support is delivered. I also miss being truly creative for myself. If anything, this year has made me feel more human, and that I need to treat myself more kindly and respect my needs.
To fellow activists, I would say, look after yourself. There will always be a fight or cause to battle; you won’t be much use if you’re ill.
To the powers that be, please fund the NHS correctly. One nurse looking after three bays on a ward is not safe. You shouldn’t go to the hospital and wonder if you’re going to die because of short-staff issues rather than what you’ve actually been admitted for. To the next ruling government – give society a break; stop breaking it. Invest in public services from education to health and more. Public services or welfare are not dirty terms. It’s vital for a thriving society and economy. Also, please fund and appreciate the arts fully and support the practitioners who want to make a difference in their communities. We will be a richer nation for it.
As 2023 ends, it feels like there is finally some light in what has felt like a very long, dark tunnel. I’m proud of us as a family and how we’ve managed to get through these tough times. That said, I really hope 2024 is kinder for us all and that we can all take the space we need and want without impacting our lives and health detrimentally.