On June 18, I published the book Lost Identity: The Search for Well-Being. Since doing so, everyone and their grandmother has been lining up to tell me how to promote the book. Apparently, I require a cinematic trailer. Apparently, I need a social media manager. Apparently, I need to be more ruthless- put profiteering first. They say.

I have been living with the side effects of a childhood Medulloblastoma for thirthy-seven year, I have a unique view. However, I have to ask how did you think the brain was going to develop? Apart of it was cut out. Radiation was fired at at it. Chemotheropy resulted in Chemo-brain.

There is no objective evidence to say I have ADHD or ADHD like symptoms. However, a little common sense suggests my brain is not neurotypical. Perhaps that is why I put people and the planet before profit. Don’t get me wrong, I would love to make a living from writing books, telling my story, doing podcasts, radio, and TV interviews. Not though to make a profit. Just to live, just to enjoy what I do.

I hear you. Why should I get to enjoy what I do to generate an income? Not many people are happy in their jobs. Perhaps for the first time in my life, I am thinking of myself. I was dealt a S### hand. I turned it around. Why shouldn’t I make a little money from it?

Yes. It is okay if I profit a little from the book. It is okay if I enjoy making social media content to support the book. I am allowed to write blogs to promote the book. I worked hard to get my MSc. I should use it to financially support myself. Shouldn’t I? At least if I make a small profit, I am doing so by empowering others.

Empowerment via storytelling

That is what I want to do. I wish to tell you my story. If you don’t like my story, fine. If you think I am ungrateful, I don’t really care. If you think I should get on with my life. IT has been over thirty-seven years. I can tell you that is precisely what I am doing. Every post, every TikTok, every blog. I am moving forward. I am getting up and I am showing up.

Do I use social marketing? Do I write and talk like I have a chip on my shoulder? Of course I do. The NHS didn’t rehabilitate me back in 1987. Why should they? They almost let me die. Then they gave me five years to live. After twenty years, they showed me the door. They gave me a phone number and told me to call if I ever need anything.

I need to know why they did not tell me about the long-term side effects. I need to understand why they did not tell me that I would be required to pay a personal trainer for rehabilitation, because the NHS doesn’t have the resources or the capacity.

I need to know why the NHS didn’t tell me that I would never belong. That my life would become a constant search to find myself. They did not KNOW! That is no excuse. Society talks about a cancer journey. When does that journey end? At the end of formal education? When I buy a house? When I say I do? I know it’s not when I buy a car, have children, or walk in a straight line. So when is it?

The truth is the journey never ends. “We exist here”, is a line from Star Trek: Deep Space Nine. Medulloblastoma don’t “exist here”. We exist wherever in time, the brain tumour and cancer injured the mind. The mind of a Medulloblastoma is not neurotypical. That is why, when organisations tell me that I should be profiting from a book written to empower others (and myself), I am hesitant to comply.

Lost Identity: The Search for Well-Being is my story. It’s raw, it is emotional, it is empowering, it’s me. I am so glad I got to write it. I am so happy that I get to tell my story to the world. My number one hope is that when you read it, you are empowered.

Life is not easy. Anything worthwhile having in life is worth working hard for.

What is next

I wish I knew. What I do know is I need a holiday. Has anyone got any suggestions?