This week, I received my first ever appointment with a neurologist.

I’m 35 years old, my life and self image, hell, my self worth defined by living with a life altering and lifelong neurological disability; and yet no-one has ever before considered that it might be worth having a neurologist explain my brain damage to me. I had to explain why I wanted to see one, only to be told I was non urgent.  After 35 years of absence. Mind blown.

As I write, I have 6 weeks til the appointment and I suddenly have no idea what I’m asking because I have been gifted so little knowledge from the medical model. Mine has been a life spent trying to fix symptoms, not explain the Catastrophe that occurred in my brain. I was just left to cope and concede and it’s only now that I know I have deserved better for the longest time.

In very broad terms, cerebral palsy translates as “brain paralysis” which happened to me when I was born deprived of oxygen 6 weeks early.

I have spastic diplegia cerebral palsy which has largely affected my left side body: strength, co-ordination and balance. And here endeth my entire understanding of the condition I will never be without. Someone somewhere should be filling in the blanks.

But what do I actually want to know? What do I want to know that a neurologist will be able to tell me?

As an emotionally led person, I honestly thought the answer would be “Why? Why me?”

But I know, rationally, that that’s not a question for any medical professional yo answer (who wasn’t present at my birth at least!)

Besides, I’m not sure what difference an answer to that question would even make. I’m still always going to be me. My struggles to live in and accept this body are always still mine.

So instead, I want to see the brain damage. Mine. I want to see how I look different to others. I want to visualise how that damage there means my muscles are chronically tight or how that damage there means I don’t have enough physicality to still lift my daughters into my arms.

The agony is, I don’t even know how this body works because I’ve never been directly told what parts of my brain are damaged even. Just that it is.

That’s not enough anymore. I deserve to know. Damaged or not, this brain is mine and we have to work together for a long time yet. I want to feel informed about why I have these limitations so we can get along with kindness, as friends.

35 years of muddling along feeling broken is enough.

Time to consider the questions I really want the answers to so I can start living, brain damage and all