It was a proper legal thing. A Human Rights Inquiry.
I was dreaming about it- and not in a good way, more in a wake up in a cold sweat sort of way.
I had armour (Kileen’s hand me down heels).
I had war paint (Claudia Winkleman is my eye makeup role model).
I was totally hyper andjustkeptontalkinginthecafebeforehand.
Then a phone call: would we like to be interviewed for local TV about rare disease? Of course we will. AAAARGH. What did I just agree to? What will we say?
We agreed key messages.
We were asked totally different questions. This meant thinking on the spot, on camera.( I haven’t seen what, if anything was broadcast.) I have no idea what I said, but I managed to get one of our key messages in. FM- our leader for the day- is experienced, calm and measured. We needed her.
The Inquiry was running late, which meant we got to watch others give their submissions. Calm, articulate, moving stories. All being recorded on video and by a court reporter.
Eventually it was our turn. We had name plates and water. We introduced ourselves, and I should have realised that I needed to calm down when I struggled to say ‘Progressive Supranuclear Palsy’. Why could I not remember about the deep breathing and happy place stuff when it would have been useful?
FM made our brief presentation. We were ready for the rest- they’d told us what questions to expect, and we had all the answers. We had all the answers prepared and written down in front of us. We may have been anxious, but we were the most prepared people in the building. We had this thing sussed; all we had to do was relax into the flow of it.
They asked different questions.
FM struggled to get a word in as @imonlyslightly and I seemed to believe we were taking an exam and, as is traditional, the question mattered less than our determination to tell everything we knew. We hardly drew breath- a result being few questions. They practically had to throw us out, still talking about the inequalities of rare disease, and patient and family expertise.
The commissioners retired
to a darkened room for a tea break and we left, burbling all the way.
The court reporter is the one I felt sorry for.