Tag Archives: herself

preparation for student life

I lived in a small town in the west. We had fields behind, a lake in front, lakes all around. Far enough from the border for it not to loom, close enough for it to be an everyday reality. Regular life in Northern Ireland in 1982.

But changes were ahead. I was planning on going to university. I didn’t know any students. Past pupils from my school came home at Christmas, smug and worldly wise, too busy being grown up to discuss their new lives.

I’d intended to go to England, but wasn’t brave enough to head away into the world on my own. Belfast was far enough.  I’d never stayed there overnight. Belfast was scary, but at least my accent would be understood there, and I could go home anytime I wanted. Small steps.

We all prepared for my student life together: Herself, the Old Man, the Brother and I learned everything we needed to know from TV. We laughed and winced and cringed and learned a whole new vernacular.

 

Rik Mayall died yesterday. Thank you, Rik for all the family fun.*

 

*not “family friendly”

connections

When I talk about rare disease issues, I always give a bit of personal context. The issues I raise and the reflections I make are only effective because they’re based in the family’s experience. Me pretending to be a confident lecturer only works because I spent the time being lost and bewildered, battling for, and with, Herself. I start with a picture of my mum, looking happy and well at The Brother’s wedding (the crutches are hidden- the progression was underway but we didn’t know it).

I talk about all the things we learned- the limits of medical expertise, wheelchairs, therapists, the dread of a late night phone call.

But we also learned about the power of someone saying “I know about PSP. I can
help.” A connection. Someone who understood the issues, and who walked with us.
We learned the power of asking questions, and of being asked.

I show a slide of two Edwardian ladies, walking sensibly side by side. They have hats and gloves and look like they are good living. Just like their real life counterparts…

driven to drink

We all need support. It’s important that we work together, that we build on each other’s learning and experience.

I have made real live actual friends through blogging. The bloggy buddies I’ve met, I feel like I’ve known for ever. Most of you I may never meet, but we connect, we are friends. I was delighted when Debra from breathelighter contacted me last week. She’d come across a film, thought about rare diseases, thought about me. How cool is that?

The film has it all- cute child, rare disease, a wonderful dog, love, friendship. The power of connection. The importance of having someone to walk along side, to share the load. Love. Be prepared to sniffle when you watch it.

http://www.viralviralvideos.com/2014/02/17/a-boy-and-his-dog-short-film-will-melt-your-heart/

Everybody deserves that connection. Let’s do what we can to support each other, to ensure that we all get that chance. Edwardian hats and gloves are optional. Blue drinks may be compulsory.

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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.