I have been reflecting on the last nine months.

It has been a period of big highs and extremely low lows. It has been an experiment in how all these stages have affected my disability.

During this period, I have been accepted as a participant in the NDIS. I have completed my AICD company directors’ course (a dream of mine for over ten years, and only made possible by receiving a Disability Leadership Scholarship). Our house was finally built, and we moved in after a 2.5 year wait. My wife started a new job; we lost my grandfather; and needed to say goodbye to a loved pet, ‘Scruffy’ (16-year-old Maltese/poodle). I was also appointed CEO of a Peak Body in the NDIS sector.

I started speaking to someone about my childhood and unpacking what it meant to be involved in a severe car accident as a child, which had a significant impact on my father’s life, and as the oldest child (aged eight at the time), the expectation that I now become the ‘man of the house.’ At the same time, navigating parents with complex mental health issues that remained untreated for the majority of my childhood. This started a life of unbalance, unreasonable expectations, and a family that taught me to mask my feelings, behaviours, and illness to ensure we ‘kept up appearance’.

With this retrospective look on life and health, it was easy to track the starting points of my disability and the ways that, over nearly 20 years, I pretended to be okay until I couldn’t.

Through unpacking the years of unhealthy behaviour and then the further years with our young family copying what I knew, I needed to relearn to start again for my health. Hopefully, I model behaviours that will create a new generation better grounded in self-care, balance, and self-reflection.

With the addition of NDIS support, I needed to learn how to accept support in the family home, and we needed to know how this addition would affect the balance of the family home. While we navigated what support looked like and needed to ensure we still kept up with supporting our children and each other, I also needed to learn to prioritise myself, ensure that my health came first, and understand the art of balance while still balancing the everyday challenges of being a father, working near fulltime hours, and ensuing we both (my wife and I) work in partnership.

I needed to find a new hobby, as my mobility has significantly declined (bushwalking, camping, and walks on the beach were our favourites).

I am now an avid concert attendee, and I am learning that some things are possible if planned, I have the correct support, and ensure that I build in recovery. I also learned to try my old favourite activities on a smaller scale. The dreaded rule of ’cause and effect’ and finding balance have not always been my friends.

In January, I started a new job. Honestly, it’s the position I have been looking for; I needed to wait for the right role at the right time. This was the first position in which I openly discussed my disability. Acknowledging that starting any new position has its challenges and that a decision to move comes with risks and the unknown, it was an expectant but cautious start to 2024.

Leading up to the new role, I had been preparing myself.

I have a history of looking after others, whether at home, work, or volunteer work. Undoing 20 years of focusing on others, I needed to unlearn some unhealthy behaviours.

I have been reflecting on some of these ‘unhealthy behaviours’ unfortunately its been raw while unpacking these behaviours that have been ingrained from childhood.

Being brought up as a minister (pastor, officer, priest) kid, you learn the act of service early. Religion, others, and a sense of always giving and never being still and comfortable in yourself have been the hardest.

It wasn’t uncommon for me as a young teenager to volunteer 20-30 hours per week for the church, while recreation activities were also always engrained in these practices. I didn’t know if it was uncommon or honestly ‘wrong,’ but in these early teenage year’s, I learnt that to be seen, be good, be noticed, you had to do more, be seen more, and be the best.

Back to the past six months.

Working with a specialist team, I have been learning to slow down, focus on myself, and unlearn unhealthy behaviours that for the past (at least) seven years meant that to be the best, I ran hard, but running hard, if I am honest, benefited others greatly, but converted long term chronic pain to a permanent neurological disability.

We are getting out and about and enjoying a new normal; I might be in a wheelchair or walker, and I may shake and stumble, but there isn’t a need to limit and celebrate during the good days (as long as I mostly remember to rest on the other days).

The hardest lesson has been to be able to work part-time now; I need to work 5-7 hours in the gym and other services and have nearly 15 hours of support per week to enable me to function the same as most take for granted. However, the standard I hold for myself hasn’t changed. To maintain and to be able to function and ensure I provide quality, high impact, and strong leadership to my team, the board and the membership, the investment in me is critical.

Nearly four months in its been a steep learning curve as a first time CEO. The hardest part has been the expectation I place on myself. I have been diligent with my therapy, my support team, and ensuring there is balance. Have I got it 100% right, not yet, but I am learning everyday, and the investment in me, my team, and understanding the ebbs and flow of the business continues to teach me when to run and when to pause.

My measuring stick is the return of excessive pain or hospital readmission, all of which have been avoided over the past 9-10 months. I am learning to notice the triggers and preempt rest and recovery. My investment in unpacking who I am and then, in turn, understanding how support needs to look like to keep me at home with my family and employable has, to date, worked well.

The aim is to always be diligent in reading the signs and adjust supports as needed. Learning that my NDIS supports have been rolled over for a further 12 months ensures that supports can continue, and with this, my ability to be employed, be home with my family, explore opportunities to be part of our wider community and seek new and exciting recreation activities. I continue to dream of new ways to rest, recover, and enjoy life; since learning that I had a skewed idea of balance between work and volunteering, I am now challenged to find what is optimal for me.