a trivial tale

a non story

nothing to report

“You do not have…”

 

The world is full of inequality and woe. There is always something to be annoyed about or confused by. There is always something more to be done to make things better. Most of us can’t change the world, but we do what we can to improve our wee bit. Every so often we get a phone call that changes our perspective. That could be a “Come now” or something less urgent, but unsettling.

About 18 months ago I got a call from a cousin of The Old Man, someone I may have met when I was a child. She wondered what I knew about the health of  the family, who had died of what. She was piecing the jigsaw together as part of a research project- gathering the information for the Big Hospital, because of her own illness. Some while later Uncle Bungle phoned- not a speculative call, this one. It had weight.

the family hair options are white or bald...
the family hair options are white or bald…

We all got a letter from the Big Hospital, with a reference number to our family history. The message was ‘Go, get tested.’ I wondered about doing the full Angelina. If I had reconstructive surgery, would I still need scaffolding type bras? But… surgery is not to be undertaken lightly. What would I do?

In a miracle of denial, I decided not to investigate or consider further until I had something to go on. I occasionally wondered about pain and hospital and my wee pets. What if they had to deal with my surgery and realise that they could be at risk too. Would they be haunted for years? Maybe I wouldn’t choose surgery, but would I always be anxious, hyper alert?

The genetic counsellor gave me details of a website. Remarkably, I didn’t look at it. We had Christmas to do, and hefty rare disease work. Also, brain fog. I hadn’t the energy to investigate. What would my energy be like if I had treatment? Surely ME brain fog combined with chemo brain would render me totally useless? (Note the way my mind moved from preventative surgery to chemotherapy without pause. There’s nothing rational going on in there.)

This morning I got the result. I do not have the mutation that some of the McSpecs have. I am at no more risk than the general population. I did a little dance. My eyes dripped a little.

I didn’t quite realise the weight of the possibility I was ignoring until it was lifted a few hours ago. I’ll die of something sometime, but not this thing just yet.

I don’t need to buy hospital nightwear.

I don’t need to tell my daughters horrible news.

I won’t end up with Brad Pitt.

It’s a non news day, and I am delighted.

every day is a school day

Some weeks ago I, along with other volunteers, gave a presentation to the Northern Ireland Human Rights Commission Inquiry into emergency care.  My recollections of the event were dominated by my being anxious and hardly drawing breath.

Today the video was made available. It was a legal thing; our input a matter of public record.

 

Key learning point 1: stick to the script.

1a: this will resolve the on/off/on/off nature of the reading glasses.

1b: this will give other people a chance to speak.

1c: this will preclude any notion that inventing a random character and giving her a pet is a useful idea.

 

Key learning point 2: go back to Weightwatchers.

2a: this may have an impact on the developing jowls.

2b: this may mean that clothes fit.

 

Key learning point 3: nothing is ever as bad as I fear.

3a: about time I realised this.

 

 

the day before the adventure starts

I’ve done the practical things- stocked up on anti mad tablets, booked flights and the hotel, bought travel size shampoo, measured the case to be sure it fits the hand luggage rules.

I’ve done the ‘not so practical but it’ll make me feel better’ things- got my nails done and bought proper foundation, approximating to my skin tone.

I written the talk and prepped slides. I’ve timed myself. In truth I’m not so worried yet about talking- that will start when I get to the huge venue and see other people talking in a slick, relaxed, we do this all the time fashion. They won’t have a panicked ‘just pretend I’m reading at Mass’ face on. They’ll be chatting.

Before I get to then I have other things to worry about. The plane. The tube. Crowds. That there London, without Spurs Fan to steer me. I’m a grown up; I know I can do this. Years ago I’d hardly have given it a thought, but that was before. Before I knew about exhaustion and anxiety and needing a dog to get me out of the house.

red sparkly nail varnish

 

And while I’m worrying away about my wee thing, our mate and fellow volunteer Awesome Academic is worrying about hers. Normally unflappable, Awesome Academic will be recording a broadcast for Nature- discussing her work on genetics or kidneys or whatever branch of awesomeness she feels like discussing,  and then answering questions. Live. She doesn’t need sparkly nails,  but there is definitely some flapping going on. We all have our challenges.

I’m getting over my ‘I don’t want to go. Don’t make me go. Why did I apply to go? Do I have to go?’ phase. This time tomorrow I hope I’ll be bouncy and brave and full of adventure. I’d be kicking myself if I hadn’t applied. I’d be devastated if I hadn’t been accepted. There are so many folk I want to meet and learn from. I want to be inspired and energised. I want to make a difference. So I will go and chat and learn and present  and enjoy. And when I come home, I will recover.

And then I’ll do it all again, in another time and another place. With different nail varnish. I think the red is too bright. I have to live up to it.

and now for the legal bit

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.

smiling giraffe, baffled

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.