A video? You ask yourself. Why now?

The full intent of me sharing my journey through life with Lupus as openly and honestly as I have thus far is to show what can be going on in the body of a ‘seemingly regular individual’, from outside appearances at any rate. I have tried to be quite honest in my physical representations, on Instagram and Facebook. As well as this, I have tried to include a lot of the thinking that lies beneath, the experiences I face daily which you may not fully realise are happening to me because my illness is not visible.

Why a Video?

However, the fact of the truth not quite ‘getting out’ to you on the receiving end has never been far from my mind. To sit across from me and have a conversation, on any day you would see within minutes the affect Lupus and Lupus-related illness has had on me. These are not big things, but they are things that would only be seen ‘in motion’, as in a video recording. Even then, a video would only show you some of the impact of Lupus, and I hope in the future to realise a way to show this. I also hope, in the future, to work out a way to record myself on a clearer camera than this first recording. For that I can only say sorry, I promise I will do my research.

What Will a Video Show?

My face. As I speak and ‘go through the motions’ of being awake, you will see the way Bell’s Palsy has taken it’s toll on me. I will, in the future, also show you the result of a  terrible mixture of having a bad hairdresser and little sensitivity in my scalp. I may record myself on a ‘bad day’ so you can see and hear me as a struggle to speak and think. If I really run out of ideas I may even just post my’first recording’. You know how you normally need to do things two to three times to get it ‘just right’? Well, in my ‘first recordings’ you will see the ‘Freudian Slips’ I so often come out with. I have a feeling I have a tick. I know that I speak slower than I should, struggle to enunciate and almost always slur my words a bit. Am I being a harsh self-critic? Sure. Am I being honest? Also yes. I used to speak a lot and always with confidence. I was a natural public speaker and salesman. Now I almost always, if not definitely, cry when asked to speak in front of groups of people and get very frustrated when talking as the words in my mind are not what comes out of my mouth.

For instance, in this video I was supposed to say everything that you have just read. But I found I would get teary if I said too much and my words slurred overmuch.


But, without further ado, here is Jessie in This Lupus Life’s first Video!!

Leave a Comment

This site uses Akismet to reduce spam. Learn how your comment data is processed.