The feel of the Unknown

As I prepare myself physically, spiritually and mentally for Epilpsy Awareness month this year, this month November 2025, for my book to press that button to self publish "Ease into Epilepsy part 1"

I question my thoughts of my story, knowing it's powerful indeed of a drug resident epileptic person with knowledge and lived experience that I can give and personal growth, but the question remains what will people think and how many people will reach this book.

My author profile is up ready on Amazon and my first children's book has got 10 global 5 star ratings but I know this is still the foundation of being a self publisher, so I sit, I question thoughts in my mind with fear and worry.

I sip my coffee, as I write this, visualising the outcome, to long have many epileptic people lived in the shadows of society, people scared of seizures and epilepsy why you ask?

Bad stigma for us also did you know this and this is important that only 3 and I mean 3% of people with epilepsy have photosensitive and the rest of us 5% do not have photosensitive epilepsy.

Guess what that means all and yes I have done tones of research for many years now that only 95% to 97% of us people with epilepsy are not triggered by flashing lights.

however I was triggered for a few years of my life trying to understand what is happening when lights became an issue because of my changes with epilepsy medication I had been given Lacosmide which triggered my epilepsy with lights until the day came where I slowly came of the medication to start my new mediation.

The question remains which is people do not know or understand the different types or even know there are different types of epilepsy , the fear of the unknown. However a change needs to come, my book has to come out, I know the different types, the side affects of long term medication, what medication can do to a person with long term epilepsy that has very much change throughout ones life with the brain chemical changing, someone with a learning disability how am I able to write this you ask yourself, well through resilience and courage and yes doing every ounce of my work on somthing true to my core myself, but the question remains will people really take in the first part of the book or rip me apart I will have to be strong and do this for that is part of being a writer and an Author, take in what motivates me and ignore the noise as a friend saids.

I decide to do this on kindle as a test run to see the outcome before later and I mean much later after part two comes out in January 2026, for if this dose reach the amount of people I truly hope this dose I shall then be ready next november 2026 to bring the paper form put.

Its the 1st November, yet I still do not feel ready, I question as my son speaks to me in the background bless him I must say early mornings together I truly love, even if I a, tired drained through the night it dose do not matter.

I question everything you could think of for a memoir

Is the truth powerful enough?

Have I worded it correctly?

Have I made the seizure types clear enough?

Is having symbolic and hidden messages within the book at a good standard?

Am I ready to speak my truth on epilepsy and help many epileptics be seem out there?

Can I really bring us out of the darkness of the shadows?

Lets be real everyone we have truly been in the darkness of the shadows with epilepsy, especially where I come from the United Kindgom, now I have been very lucky to have pushed through and have somewhat of mainting my freedom of life even with many and I mean many hospital trips since the age of five onwards, staying in as you do and feeling as time when on "Well I'm all good now, I want to go home," yes I would be lying to you if I said I never discharged myself off course I did there was times I just needed to get out when lack of help and the health system failed me along with many others.

Yes the truth must go into this book without getting myself in trouble of course wording this the best and correct way possible.

Now the clustered seizures you are thinking what are they, well let me tell you they are epileptic seizures of any type of epilepsy a person has not always one type, where you have more than 2 for example there was a few times I would have a good 70-100 types of different epileptic seizures sometime over 100 plus, yes you heard correct 70-100 and more where I would be bed bound not being able to walk correct Walk!

Benzo medication became somthing in where they stopped working on me and I did not understand why and I had to just let the storm say pass by, so when I went to a certain epilepsy hospital they told me once I hit 5 clustered seizures my threshold drops that was why my benzo medication with clonazepam was not working so I had to take the medication before my threshold with my epilepsy dropped.

I was told if I had three auras to take my emegency medication, yes epileptic auras is real and it's like sensations with you head, body it's differ for every epileptic person out there, it's also a sign a seizure is coming, I would have lots of epileptic auras before the epileptic seizures came at me like a storm.

But I will leave you with this my darling Vocal readers I'm still here, now not bed bound anymore and ready to speak the truth in the wisdom of words of epilepsy I have to spread awareness.

Im still here and still standing, the question remains can I do this and can I make a true impact this needs!

What do you think?

Author note- A reflection and preparing myself with this journey.