I woke up with a very heavy feeling in my heart and a morning headache again as I was struggling to control my saliva, I wanted to bury ,myself under the bedclothes for the day but luckily Ruth was there to bring me to the surface of the day. We started to advertise the Awareness Day as we handed our flyers around Chorlton as people were chatting over their lunch , I just passed them by with my emotional load to carry. When we got home we decided to watch the film ‘I am Breathing’ so we would be prepared for event. It was strange how Neil and I had a very different disease but the parallels were clear as we both struggle with a terminal illness . It’s strange that most days the reality of death is far from my mind but sometimes I see a glimpse and that vision is so clear and definite . I was concerned as some of the facts were wrong as the guy in the film had a genetic predisposition , I don’t have the genetic trigger but people maybe presume. that I have and this misinterpretation could have consequences for Sam and Joe. As I watched I realised how much his wife supported him and how much I miss Tim being by my side.
We meditated after the film to clear my mind , it was successful as I felt that the dark clouds on my mind were clearing. In the evening we had a meeting about the event , Angie his so generous with her time as she produced all the posters, and tags and a number of other contributions to the event, and Tracy and Ruth popping into local businesses to advertise and collect raffle prizes from beneficent people . I had a thought while the meeting progressed that after my 100 day blog I intend to complete an altruistic every day for 100 days, but don’t worry I will not blog every day with what I have done I just want to enable myself to still give to people and not to be merely a recipient. Maybe you could join me and we could share our experiences ?
As the meeting folded up Angie asked me how I found I found the film, the heavy heart I had been holding all day crashed to the floor and broke. I typed out my scary thoughts of being controlled by this disease as it takes a little bit of me every day as the neurones die one by one. I typed out my fears of not being able to control my limbs but having no voice to ask , to complain, to make others aware, to support and assist but my mind , senses and emotional feelings are so intact .