People sometimes see my anger without understanding the lifetime of experiences behind it.
My psychologist helped me understand that my need for control did not appear from nowhere. I was removed from my biological mother as a baby after experiencing abuse and neglect. I then spent my childhood in foster care without the consistent care and security that every child needs.
Those early experiences left me with little confidence that other people would protect me or meet my needs. From a young age, I learned to rely on myself, control whatever I could and fight for my own safety.
Despite everything, I worked hard to become independent. By my early thirties, I was a successful retail manager. I helped open a new branch in Belfast and was preparing for an opportunity in New York. I had a girlfriend and hoped to settle down and start a family.
Then I was diagnosed with a brain tumour.
Following surgery, I became severely disabled. I experienced problems with coordination, balance, speech, swallowing, epilepsy, facial weakness and double vision. I spent two years in hospital and lost my relationship, career, independence and the future I had been building.
Once again, I had to rebuild my life.
My Brain Is Like a Computer
Think of my brain like a computer storing everything that has happened throughout my life.
Every painful experience adds pressure to its storage. Positive experiences cannot erase the past, but they reduce the pressure and help me carry it.
For seventeen years after leaving hospital, I had control over my care. Difficult things still happened, but I also had the freedom to create positive experiences. I could choose who supported me, go out, travel, take on challenges and enjoy my life.
The good helped to balance the bad.
In 2022, control of my care was taken away and handed to an agency. Since then, difficult experiences have continued, but I have lost much of the freedom that previously helped me cope.
Imagine that every bad experience adds ten units of pressure while every positive experience removes eight. A small amount remains each time, but the system can continue functioning.
For the past four years, the pressure has continued to build without enough positive experiences to reduce it. It now feels as though my storage is full.
The Protective Side of Me
When I feel ignored, controlled, unsafe or treated unfairly, a protective side of me appears. I call this side Frank.
Frank carries anger that I buried for many years. He feels that he must defend me because the people and systems that should have protected me have repeatedly let me down.
Frank is not an excuse for anger or hurtful behaviour. He is my way of describing the defensive part of me that appears when I am frightened that my needs will not be met or that I am losing even more control over my life.
I am trying to understand this part of myself so that I can express my concerns before the pressure becomes overwhelming.
An Impossible Position
Because I depend on carers for essential daily support, trust and consistency are extremely important. Over the years, I have had more than thirty carers.
When an unfamiliar carer arrives unexpectedly or a serious mistake is made, it can bring back the fear that I will be left unsafe or that my basic needs will not be met.
This places me in an impossible position.
If I strongly explain what I need, I risk being described as demanding or controlling. If I remain quiet when something is wrong, my needs may not be met, placing my health, safety and quality of life at risk.
If I bottle up my concerns, the fear and frustration continue building until they may come out as an emotional outburst. People then judge my reaction without understanding everything that caused it.
What I Am Asking For
I am not asking to control other people. I am asking for control over my own life.
I want to choose who enters my home, help organise my care, receive support from people I know and trust, and have a meaningful say in decisions affecting my body, safety and future.
I accept that my anger can sometimes come out in the wrong way. I am not using my past as an excuse. I am asking people to understand what lies behind it.
Returning control of my care would not solve everything that has happened to me. But it would remove one of the greatest causes of my distress and give me the stability needed to rebuild trust, manage my emotions and live more independently.
I have spent my entire life trying to make the best of terrible situations. I am asking for the freedom to do that again.
Giving me control back is not rewarding my anger. It is addressing one of its biggest causes and giving me a fair chance to feel safe, rebuild my life and live again.