Celebrating: getting back

There was a while when I did all the things. I loved it when I could do it, but I eventually ran out of steam and stopped. I walked away from work I’d been focussed on for years. I slept and slept. On a tentative step back to the world, I spent a year as a Boardroom Apprentice. Then the world changed for us all. The just regained confidence began to dribble away in the restrictions of the COVID world. Only one thing for it- go out and find something to do.

(Clearly, by “out” I mean “to the internet”. Out is an old concept I hope to revisit in due course, but its not really relevant these days.)

Luckily, the charity I had been volunteering for was looking for new board members. I put my hand up, jumped up and down a wee bit shouting “me, me, me, pick me”, and filled in a form. I’m not suggesting they were desperate, but I’m back.

Belfast City Hall lit up for Rare Disease Day. Why, yes, I did get emotional. How did you guess?

I have lots of catching up to do. The rare disease world has changed since I left. Our first project completed, and funding was attracted for a development of that work. There were weeks of events to mark Rare Disease day in February, all virtual. I did miss the gathering up, the hugs, the sociability and connection of it all, but I’m happy with the accessibility & ease of this way of working. New staff, volunteer colleagues to get to know, new areas of work to get involved in.

Learning, people! A sense of purpose!

It’s been a long time, baby

Is there anything to say that won’t bore you and me both? Can my brain compute anything right now? Is there anything in the world apart from COVID and government incompetence?

Andra is having fun in Iceland, amongst a volcano and thousands of earthquakes. My world has shrunk so that a trip to collect Girl2 from school felt like a day out. School, remember that? On Monday, all the other household members were at school- the teacher, the classroom assistant and the year 14 pupil. It was extremely odd to have the house to myself for hours. Harry lay on the mat by the front door, waiting, from lunchtime.

It’s a big change for Girl2, since school has been online since Christmas, and only some year groups are back even yet. As this is her final school year, they’ve had to go back to allow a series of assessments to take place instead of the cancelled A level exams. These assessments will result in grades, which will, in turn, determine next steps/ university admissions/ employment options. A level year always brings pressure, but also, as the most senior pupils, some fun- access to the common room, a ‘formal’, a leavers’ day with pizza and sports challenges, many 18th birthdays to celebrate with nights out. This year they have the pressure without any of the fun.

Family fun

Girl1 is studying her university course from her bedroom at home. She gets to go to work 1 or 2 days a week, and sometimes meets mates in the park. Exciting times.

We have all taken comfort from rewatching box sets. Spurs Fan just completed The Sopranos, and we had to stop him just starting at the start again. We’re doing The Wire instead. Yes, there are loads of newer things, but sometimes only the comfort blanket will do.

At the start of all this, I couldn’t read. Nothing worked. Anxiety, brain fog, confusion, overwhelm. Whatever. That comes back sometimes, but I’m reading again. Thank all the gods. On a few days this week I’ve been able to read outside in sunshine. That has been a joy.

Fresh air, without trekking round the well worn local bridges or overcrowded towpath. Everyone in south Belfast on the same routes, over and over again. The mountain routes in the north of the city have seen a 20% increase in use over the year, but I’d have expected it to be greater. Because we can’t travel anywhere, local parks and paths are jammed.

River Lagan

The place I want to be is at the seaside. Unlike me, that seaside is in the EU. Donegal. COVID rates and responses have always differed between the two jurisdictions on the island. At the minute, disease rates are similar, but the vaccination rates are higher in the north. Our Health Minister yesterday indicated that foreign travel was unlikely this summer, and that travel to the south will depend on the vaccination rates there. I’m not surprised, but I am struggling a bit.

Rossnowlagh, Co. Donegal.

We all need something to look forward to. Go on, inspire me. What are you looking forward to?

Keep going, be the light

You turn up, you decide

Dare greatly

I have been known to grumble about the state of the world. Politics fascinates and depresses me. I joined a political party once and youngest was horrified that I might stand for election and embarrass her by being displayed on lampposts. That’s not for me. Political parties are broad churches and each has policies I couldn’t support. And I couldn’t cope with the lamppost thing.

I’ve had a chronic illness and been unemployed for 14 years. I spent a while on the sofa watching The West Wing (still a delight). I’ve been fortunate enough to be able to do some volunteering over the years. I was a meeter- greeter/ signpost at the Cancer Centre. I posted information packs for a small charity. I told the story of my mother’s rare disease. I helped found a charity. I told other stories and organised conferences. I chatted to patients, carers , policy makers and Ministers. I wrote funding applications. The charity employed staff to deliver something new for Northern Ireland.

And then I ran out of steam. The well ran dry. I resigned from my voluntary role and went back to sleep. I Marie Kondo’d 2 cupboards. I licked my wounds and went to the seaside. I hoped I would recover a bit, and wondered what I might do next.

Why not apply for this?, said the Nudger in Chief.

I can’t do that. My brain doesn’t work. I need to sleep some more.

It doesn’t start yet. By September you’ll be getting bored, so fill in the form.

No, I can’t do that. I’d have to think.

You can do it.

I submitted the form at the last minute, convinced it would come to nothing. It turns out that Boardroom Apprentice is the best thing I could have done.

The programme provides group learning, team work, and practical experience for a year with a board. Simply meeting people doing the role is a great way to demystify who a board is for. And there’s more: support from experts to learn more about governance, communication, questioning, numbers, partnerships; opportunities to participate in events on local government and cyber security (who’d have thunk?); chatting to senior civil servants in a queue; learning to get comfortable being uncomfortable.

I’ll never be a politician, but there are many ways to make a difference. My confidence continues to wobble and I’m lucky to have people to tell me to wise up.

Decisions are made by those who turn up. What’s stopping you? Apply now. You can do it.

Reparations rather than justice

Northern Ireland lives in its past. Politics is still about making sure that “themmuns” don’t do better than they should. There will be nod towards agreement and then a stalling, because it is better to go nowhere than to give an inch. Ideally, of course, the fault for the failure to progress lies with one’s political opponent. The victims of the failure are always the rest of us.

The current victims of political stalling are The Victims, those injured, bereaved, or providing substantial amounts of care for injured, as a result of a conflict related incident. Colin Davidson produced a moving series of portraits, Silent Testimony, of some of the people waiting for an acknowledgement of their loss.

There is to be a pension, on a scale up to ten thousand pounds per year for “those injured through no fault of their own”. Spot the difference? While apparently caught up in a circular argument between London and Belfast about which pot the payment will come out of, the real bone of contention is about who qualifies as a Victim. Clearly, not themmuns. A stated aim is to promote reconciliation, but that won’t happen if you give money to the baddies as well as the innocent citizens, in this fantasy black and white world.

In the real world with all of its shades of green, red, white, orange, blue and grey, many many people are experiencing worsening health. People are unable to work and build up pensions. People with disabilities rely on state benefits and the support of friends and families.

21.7 percent of 16-64 year olds in NI report a long term illness or disability.

80,000 people are thought to be ‘shielding’ from coronavirus.

People disabled by conflict, cancer, virus, road traffic accidents and genetic diseases.

All those families know the cost of disability. A pension for some extends the hierarchy of victims into disability. It says that one is more deserving than another. In an attempt to acknowledge and address the suffering of victims and survivors of the prolonged conflict, they are disregarding thousands of others.

A wider conversation is necessary about the true cost and price of living with a disability, as it impacts on all of us. Repartions are a symbolic acknowledgement of victimhood, not justice for all. In NI we are very good at narrowing our vision. It’s time to think bigger, to be bold and to move towards working for all of our society.