Living Without Understanding 

I grew up with cerebral palsy. That was known. What wasn’t known was autism.

I lived with both, but only one had a name. Growing up I didn’t know or have an explanation I could use. I didn’t know why I struggled in the way I did. I didn’t know why things felt different for me.

I managed without that understanding.

The result was consistent difficulties. Socially, emotionally, and in how I was interpreted by others. What I was experiencing and what other people saw didn’t match. I live with difference. 

I adapted where I could. Where I couldn’t, I was left with repeated failures – to meet expectations I didn’t fully understand and yet there was understanding, just not from me. 

There was no point at which everything was brought together in a way that made sense to me. That came later.

When I finally found out that autism was part of my experiences, it explained patterns that had already played out over the years. But by then, the impact of not knowing had already been established.

This is about the fact that I didn't know, and I lived with the consequences of that.

The outcome is measurable in terms of missed understanding, misinterpretation, and the accumulation of experiences that didn't fit.

Over six decades now, I have spent years trying to understand. Looking for explanations. Looking at decisions made. Looking at the responses around me.

The facts remain the same whether I revisit them or not. What happened cannot be changed and what I understand now is separate from what I experienced then.

I am determined not to keep reprocessing this for it to be valid. I can acknowledge it without continuing to engage with it.

This is where I stop.

My lived experiences continue. I am not continuing the analysis of it.

Not because it didn't matter, but because continuing to analyse it affects my health and doesn't change the outcome.

From this point, my focus is on what is within my control.

That is separate from my past and my lived experiences.

I write about the past because it's important I know and understand.

I will not continue to revisit this. 

Ilana Estelle is a mental health and wellbeing advocate who combines educational insight with her personal experience of living with physical, mental, and emotional disabilities. She holds diplomas in Counselling, Diet and Nutrition, Nutritional Therapy, Psychotherapy and Counselling, and Stress Management. Through her writing, Ilana supports others in navigating their emotional, mental, and physical health challenges. In addition to writing for The CP Diary, her work has appeared in healthy lifestyle magazines. Ilana is also the author of three books: Cerebral Palsy: A Story – Finding the Calm After the Storm, Spirituality, Healing and Me, and Survival: The Covid Years – Time for Change.

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