it’s not rare to have a rare disease

My volunteering life is about rare disease; I know the stats, I know some of the people. When I have brain power, a significant portion of it goes to scheming and plotting and connecting and advocating and talking about rare disease. It’s not an abstract, it’s the reality of people’s lives. It’s the kick in the gut when we see a family on a flight, on their  way back from Great Ormond Street, or we spot the specialist wheelchair in the shopping centre. It’s the reiteration of experience when we listen to people tell their stories, which could be ours. It’s the blow when there’s another diagnosis of something complex or terminal. It’s the shock when we lose one, however predictable that loss.

We lost one tonight.

My Uncle Paddy. With Olive for over 60 years, father to the Incredible Singing Cousins, grandfather to The Next Generation. A kind, gentle, and much loved man.

He had Progressive Supranuclear Palsy, the rare neurological condition that killed his sister, my mother Herself, and a family friend, Kathleen. Three people from the same parish, all connected, all with the same rare condition which is difficult to diagnose, and for which there is no treatment or cure.

I can rant about many things. I can talk sensibly about rare disease issues. But, it seems, not tonight. Tonight, I’ve run out of all the words I use. Tonight, I miss my people. Tonight , I grieve with my people.

surprisingly beautiful

Smug, arrogant, pompous- those are some of the politer words applied to the band U2. They gave away their last album, just because they could. Anyone with an iTunes account got it, and many were really, really annoyed. Such presumption! And then there’s Bono. A peacock in leather and Cuban heels. He thinks he is somebody, with all the jetting round the world to save people, and all that pontificating! Why would anybody take U2 seriously?

Because they are musicians and showmen who give their all, and who keep finding ways to touch hearts. I’ve seen them several times since 1983 and am always surprised. Last night, for the first time, I called their work beautiful. Nobody was more surprised at this than me.

It’s partly the fault of the free album. Boy was the first album I went into a shop and bought for me, with my own money. I invested in that one. The Joshua Tree was a constant for a while. Many memories have that as a soundtrack. Decades later, Songs of Innocence turned up on the laptop and I paid no attention. It was there, I’d listen to it sometime. I’d notice it in the car sometimes, pleasant & unremarkable.

Last night I paid attention. I got emotional at Iris (hold me close) and Song for someone. Maybe it’s my age.

I clapped and waved and sang along. I did some chair dancing and some upright bouncing along. Appreciating the sentiment, and the Paris images, I even sang along to Pride (in the name of love), which I hate.

A key part of the U2 experience is the extra stuff- those bits of the show which complement and expand on the music. When they played in the park at the bottom of our road, we had the huge golden arch and a bi plane. Was that the night of the descending lemon also?

This time round it’s the screens, massive see though screens, along and above a walk way almost the length of the arena. Not only are massive animations projected onto the screens, but the band frequently performs from inside the gap between the two, literally captured inside the whirl of images — humans interacting with digital 1s and 0s. The artistic effect is powerful.*

u2 screenu2 street screen

Today, I am exhausted and sore. I could have avoided some of that, but sometimes it’s worth the payback.

 

 

 

*from http://www.usatoday.com/story/tech/2015/05/20/u2-technology-large-screens-silicon-valley-ties/27648129/

all the remembering

the boy soldier, 1934
the boy soldier, 1934

Granda joined the army when he was 14; his mother tried to get him back when she found out, but he had no plans to stay on the farm. Soldiering was a grand job, he’d say, except when there was a war on. Before the war he was in Burma and India. Later he was at Dunkirk, & in North Africa. He saw the world and came back, to the town 10 miles up the road from the farm. He still worked for the army, and spent time at the Legion. He’d have his grandchildren marching round the living room, and saluting properly, but we didn’t hear many tales. I went to primary school with army children. People my age in Belfast or Derry or South Armagh had very different experiences of the army in their childhood.

Remembrance Sunday was for them, the old men. It was a day to acknowledge their service and their friends who didn’t come home. To consider all that was lost.

That all changed in 1987, when Remembrance Sunday became about all of us. The McSpecs lived in Enniskillen, we knew the people. We were all affected. This interview with Gordon Wilson still makes me cry.

pic pinched from twitter
pic pinched from twitter

There are many other veterans now, survivors of recent wars. Many other people have been lost. Young people, like Granda and his mates used to be.

None of it makes any sense. Loss, death, severe injury, homelessness, destroyed families, refugees. We will remember them all.

image from: http://www.ppu.org.uk/whitepoppy/index.html
image from: http://www.ppu.org.uk/whitepoppy/index.html

 

 

visiting

She chose the dress. She got the flowers. It was a special day.

For the first time in months she was going to visit her mum and dad.

There was hugging and food and giggling with the auntie, and then they all headed off. They wrapped up warm, and squashed into the car.

She touched up her lipstick on the way.

As if they were actually there.

As if she could hold them, or feel their warmth.

But they are long gone, and know nothing of the lipstick, the wintry wreath or the stones she has carried faithfully from the beach.

Back in the car, heat made its way back into their bones and they told tales of the parents. Gone too soon, but gone. Living on in us.