Finding the chance and ability to be happy and joyful when faced with terrible pain and challenges is so hard. Sometimes I feel as though it is almost impossible. 

I won’t pretend that I am an expert or that I find it any easier than anyone else. I feel particularly disappointed in myself when I remember how light hearted and happy I once was. I was always laughing and joking, nothing could stop me … But that was when my life was a lot lighter and far less difficult! 

It feels like that person was taken away from me and replaced with constant pain and challenges. It feels so unfair at times. Like a crime was committed, a murder or something violent, but it doesn’t count, not in this world anyway. 

It isn’t easy to go from one time being a presence, a functioning being, leading teams from all over the world and thriving on energy and excitement to being unable to use the bathroom on your own or struggle to swallow. It’s souls destroying! 

I think a lot of my grief is for the old me that I want back and I fear what will become of this new me… I fear a lot of things now. 

I fear the pain of each new hour. I fear what the next day may bring. I fear progressing further. I fear becoming nothing more than a body on a bed. I fear my darling furries being taken from me if I couldn’t care for them alone. I fear being alone and having to try and take care of myself. I fear having to have a stranger in charge of my care and my body. I fear being institionized. I fear this life I have, this one life I have being pointless and wasted. I fear that most of all. 

Trying to find happy amidst all this is not easy. But I am faced with having no choice. This is what I have to work with. 

Happy can no longer be going out all night dancing. It can no longer mean drinking all night. It can no longer mean holidays to exotic locations and throwing caution to the wind. It can no longer mean whole days spent making love and intimacy. 

Happy has to be something as simple as looking at a garden in full bloom. Enjoying a moment of sunshine on my face. Watching the furries wrestle and play. Listening to my favourite concerto. Seeing a friend reach a milestone in their lives. Knowing my loved ones will be ok. 

Happy has become less of an emotion or physical experience or expression and more of a knowledge of something. A deeper knowledge and acceptance of something… I hope one day that I will learn how to make that be enough. 

Gentle hugs,

Trish.