Living With Cerebral Palsy and Autism

Six decades of living with cerebral palsy and autism without the understanding that might have helped me make sense of myself.

What happens when you go through life with something you don’t know you have?

For all of my life I have known I was different. I knew I presented differently and experienced certain things differently, but I didn’t have an explanation for why. I simply got on with things with the information I had.

Except there was a piece of information missing.

Cerebral palsy.

Those words matter because knowing something about yourself gives you a framework. It gives you somewhere to begin. Without that framework, you can spend years trying to make sense of experiences that never quite seem to fit. You adapt. You compensate. You find ways around things. You may even become very good at appearing to cope.

But coping and understanding are not the same thing.

Looking back over the decades, I can see how much energy went into trying to understand myself without the information I needed. Experiences I might have understood through the lens of cerebral palsy were instead left unexplained.

When you don't know, you fill in the gaps yourself and that eventually becomes your norm.

I wasn't consciously living without knowledge of cerebral palsy. I didn't know there was something I didn't know. There is an enormous difference.

Had I known, it wouldn't necessarily have made my childhood or my life easy, but that was my call to make. It would have given me context.

And context matters.

So, I continue to look backwards with information I didn't have when I was living it. Memories acquire different meanings. Experiences that once seemed disconnected begin to join together.

Spanning decades, I haven't been able to grieve. But it's not grief simply for what happened, but for the understanding I might have had. I can acknowledge what it cost to live without that knowledge.

I am now working through the trauma. Sixteen years in and it’s exhausting. There are moments when I look back at everything I have carried and don't know how I am still here.

Writing has become a necessity. It lets me put language around things that once had none.

I cannot recover the years in which I didn't know or understand. What I can do is understand now. There is something powerful in finally being able to look at your own life and say: So that was why.

This is part of my story. There are people who spend years, sometimes decades, knowing that something about their experience doesn't quite make sense. They live around the missing information. They develop ways of coping. They carry questions they cannot yet articulate.

I didn't blame myself, but I did think I was a problem to solve.

I still don't have all the answers. What I have now is something I didn't have then: context. And with context comes the possibility of looking at my life not as a collection of unexplained difficulties, but as a life that now makes sense.

I needed to know about me.

Now that I do, writing is helping me understand the life I lived before I knew.

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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