Dear anita,

Some needed connections between brain cells/ neuropathways were not made.

In my brain scan I have two black holes, one where the tumour was and one where the epilepsy was. When I had the epilepsy cured I thought I was fully back on track to live a “normal” life. Seizure free, medication free and I had just had laser vision correction to be free of wearing glasses. I got my 1st job, got my drivers license, met my current wife etc. I never really comprehended that my invisible disability was still there, still sabotaging me, just not in ways that really mattered. I spent 20 years believing this….then BC came along……..

I was ..unhappy, to put it mildly).

I became numb after my similar experiences, especially when any intensely sad family event happened(death of pets, close relatives). I would just stand there being numbly stoic. I just thought I was all ‘cried out’ from my own traumas.

We are those baby sea turtles that get injured on the way to the ocean. Once we get there we cant deep dive with the others very well. We mainly hang around just below the surface.

…..severely down on my luck due to ‘fate’. Now I have a chance to get myself unstuck and try to move on.

Don’t get me wrong, fate isn’t completely absolved. It still was the root cause of my seed trauma(prolonged febrile convulsion), and choosing neglectful/abusive parents for me. But realising this and understanding the overall effect on my life is a big relief. A bit like when I got BC, part of me was so relieved it wasn’t my old enemy epilepsy back for revenge. BC had worse odds, but was something different.
I remember looking through the glass wall from my bed in ED, at the nurses station monitor. It had a brain scan on it with a white blob, I instantly knew it was mine. Then I started seizing and was flown by air ambulance to the nearest capital city.

I would fit the CPTSD diagnosis, if it was available in the U.S., where I live.. and if there was a reason for me to pursue it

Yes, I have read about how the US health system is run by the insurance companies. They aren’t keen on having new diagnoses added to the DSM.
Where I live, the CPTSD label has no real effect on my life, unless I can convince a psychologist, to convince the government/insurance, that it has stopped/severely reduced my ability to do “my normal occupation”. How vague is that, especially when I have never had a “normal occupation”.
And these days health insurance companies run a mile if you have any sort of mental health label. That is why people won’t get their genetics tested because the gov/insurance will ping them for it.

the labels can be helpful in that a person feels no longer alone

That’s the irony, all through the first 30 years or so of my life, I never met someone with any sort of epilepsy. Let alone someone with an invisible disability like Arrested Psychological Development. I was constantly alone.

And yes, I am way, way better than I used to be.

Me too. Now I am going to do some intense research on how to deal with APD in adults.

Kind regards,

Klast