Tag Archives: herself


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.


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.



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.

interminable half term update

With teacher training days attached on either end-different schools, different days, of course- the half term break in our house is lasting almost a fortnight. (Feel for Spurs Fan who just got two days, despite working much harder at school than either of his children.)

We’ve had two days of dancing competitions, lots of transfer test practise, Hallowe’en pumpkins and dressing up, a trip into town to queue up outside the fancy dress shop, building with sugar cubes at the museum, fast food, a cold, cold, cold trip to the caravan, a lot of sleeping, and some filming.

Not a bit wonder I’m tired.

Oh, sorry, bloggy buddies, do you want more? Detail? Information? Pictures?

Girl1 & pumpkin

Girl 2 & pumpkin

this IS dressing up for Hallowe'en
this IS dressing up for Hallowe’en

sugar cubes Ulster Museum

sugar cubes Ulster Museum

collaborative art

Enough of the sweetness, speccy. Filming?

Some months ago I gave a talk at an event run by RCGP. There were doctors and palliative care workers, people living with illness, researchers and volunteers. My talky bit was partly personal- about Herself and how we coped with her illness, partly wider issues of living with rare disease. Done and dusted. Everything I have to say said. Job done.

Until an email arrived a few weeks ago… Would I be prepared to talk on film about some of the issues? There’d be other talking heads. I’d only have to make two or three points. Big mouth strikes again. That pesky mother of mine, finally succeeding in pushing me out of my comfort zone. She’s laughing in the ether, happy that I remembered to put the make up on and iron the frock.

By Friday morning I was practically hyperventilating. Who will get to see this? Why did I say yes? Is it too late to opt out? Eeek.

not intimidating at all

not missing out

bright lights

I burbled on. The film maker wanted several ‘takes’ of my answers. If only I could remember what I’d just said…

I’ll let you know when it’s on YouTube. Jake may make a sneaky appearance, so we’re bound to go viral.