This Is How They Get You

OK, so this actually just happened.

Isla:  I love you.  And your wheelchair.  You’re my wheelchair Mummy.  I don’t want another Mummy.  Mummy, are you sad?

Me: No.

Isla:  Why you crying?

Me: Because I’m happy.

Isla: What?

Me: Because I’m happy.

Isla: What?

Me: Because I love you very much.

Isla: Yeah, I love you, too.  Can I have an ice-lolly?

 

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Abstract Sandwiches

On Tuesday, when I picked Isla up from nursery, she hugged my lap as she sometimes does.

‘I MISSED you, Mummy.’

‘Really?’ I asked.  She’s a Daddy’s girl, see.  I am obviously still questioning every bit of affection she doles out.  To me.

‘Yeah,’ she said

‘Did someone pay you to say that?’

‘Uhm.  No.’

When I’m happy, my eyes kinda crinkle up until you can’t see them.  Like Isla’s.  Because, y’know, I’m her mother.

I did a little dance in the carpark, my day made at one o’clock.

‘Mummy funny,’ she laughs.

Yeah, I s’pose I am, a bit.

Isla’s funny, too.  She has my eye crinkle and my sarcasm.

Yesterday, she was loaded with big foam puzzle pieces.  Her arms were so full she was just a stripey sweater on legs.

‘I LOVE you,’ I tell her.  ‘Where did you come from?’

She cranes her neck and looks at me sideways.  It is my own incredulous face looking back at me.

‘From my bedroom,’ she says.

True enough.

I did the pee-pee laugh with that one.  Also true.

Since Isla’s started nursery, I’ve been doing some thinking.  I’ve also been doing some Math, mostly at 4AM.  Mayhaps, more about that later. For now, I will say this: Don’t do Math at 4AM.

Anyway.  This is what I’ve been thinking.  Since Isla started doing things.  Outside the house.  Without me.

This is how life goes.  I’m proud of her.  I’m allowed to miss her.  We need to keep going. And I’m so fucking proud of her.

I’ve been thinking that getting help to do things makes me no less of a mother.  Because I’m the one who misses her when she’s at school.  And also when she’s asleep.

It doesn’t matter that sometimes, I can’t lift her onto the toilet. Because I’m the one who claps when she pees on it.

I’m (one of) the people who reads to her at night. And in the afternoon. She sits on my lap, in my chair. And I can still find that place on her neck that I’ve loved since before she was born.

And sometimes, still, she falls asleep on me.

We wake up two mornings a week, and I make her lunch. Her sandwiches have holes in them, because I have very few knife skills. I don’t care. She eats her lunch.

I might squirt mayo hearts on the bread.

I send her out and she comes home and hands me her empty lunch box. And sometimes her boogers.

She makes me a coffeeshop and a dragon out of blocks.

She goes into the fridge and gets a snack. I tell her not to ruin her dinner.

And she gives me that sideways glance. The one she gets from me.

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Kinda like this.  Isla isn’t sure about empty envelopes.

My Island Diaries: Armadale, Skye

Are We There Yet?

I can’t say much about my third hair and make-up trial. Because y’know, my future husband reads this blog. But I will say: Jackpot! He’s a lucky man.

After I slapped myself in the face with make-up remover, I let him back in the living-room. We were waiting to go to Skye for the week. Off to Dad and Anne’s new house. With a separate suitcase just for books.

Dad called and said, ‘I’ll be there at 1.30.’ And then 4.30. And then 7.30.

At about 8 o’clock we loaded the books and the chair into a rented truck, and set off after a round of Luggage Jenga.

‘Are we there yet?’ I chirped from the back.

‘You still have glitter on your face,’ said Sarge.

‘Do not.’

‘Do, too.’

Take It To The Bridge

We missed all the ferries. So we drove up and over to the bridge. In the snow, with the radio tuned to this show.

Anne called a weather and traffic hotline, and someone actually gave us the right information.

I fell asleep and woke up when Dad swerved to avoid hitting a deer.

Welcome home, I thought.

Hello Darkness, My Old Friend

At about two in the morning I unfolded myself from the back of the truck, did a sliding jump to the ground, and looked up to the stars. ‘Hello, lovely old people,’ I said. I may have winked. Except I’m not co-ordinated enough, so I blinked.

Within minutes of stepping into the house, Sarge was reaching over my head to hit the light in the spare room.

Darkness and silence, until, ‘I didn’t even start with glitter on my face.’

‘OK, it was just your eyes, then,’ said Sarge.

‘Good save,’ I said.

Coffee and Hope

The next morning brought new furniture for Dad and Anne’s new place. I sat in the kitchen with coffee and a book because I always bring my own chair. I transferred onto the new couch before my coffee got cold.

‘How’s the book?’

‘Anne Frank is in the attic. But I’m not giving anything away.’

That night we went to a pub for dinner. And talked about the wedding while I broke my No Drinking ‘Til June rule. Several times.

The accessible toilet was so big, I could have slept in it. Even bigger than the one I slept in that one time in France.

Chips With Everything

Dad, Sarge and I were in a diner-type-thing, talking about the wedding.

An older couple (of tourists) was sitting at the next table trying to figure out why everything on the menu came with chips. Strangely, they reminded me of myself about 20 years ago. Because my first kinda-sorta meal here was egg and chips. Part of me is still waiting for a bag of Wise chips with that. I’ve been here a long time.

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The Art of ‘Fuck It!’

An hour after eating, we went swimming. I can walk in water. Not on it, but in it. And so, I paced the pool while Dad and then Sarge did laps. I used to swim really well and then I stopped, and these days I’m never far from the edge. This time, I blamed it on the kids’ party in the next lane. The water was really warm, and I didn’t want to think about why.

I scraped my feet on the way back into the chair. But I had to get off the floor.

Later, in Dad’s bathroom, I’m sitting in the shower, hoping I’ve air-dried enough not to slip on the floor while I transfer to my chair, parked at an actually jaunty angle, waiting for my less jaunty, more nervous ass on the seat. I don’t know the angles of this bathroom, how many steps and swings and pivots it takes to get from A to B and back. But the thing is I’ve thought about too much. I’ve thought about falling. And I can’t move. So. I wait. For half an hour.

‘Fuck it,’ I said. And I kind of launch myself from one seat to another. I got in, so I got out.

Target Practice

The next day, with the help of these guys, I got to launch arrows into a target. No, the target wasn’t Sarge.

They might have moved the target closer. And then I shot over it.

I needed that. After a few moments of ‘my body doesn’t move like that’, I needed a day of, ‘Oh yes, it does.’

As I launched the arrows farther and father away, I pep-talked to myself. ‘Let’s bust some shit,’ I said. And I did.

My argument is invalid.
My argument is invalid.

Things Work Out

The night before we left, I didn’t want to go. Or, I wanted to know when we’d be back. The silence and the stars have always done good things to me.

I’d gone quiet when suddenly, a new friend said, ‘Things have a way of working out, Lorna.’ How many people were with me at that moment? All the stars.

I looked at Sarge. ‘Yes,’ I said. ‘Things work out.’

A Certain Rite of Passage

Yesterday marked 6 months until the wedding.  Sarge and I celebrated by opening some sparkly from the engagement party and watching a double-bill of The Usual Suspects and Mixed Nuts.  Guess which one was my choice.

And.

We were also toasting the the fact that I quit my job on Friday.  Although I prefer the term ‘left voluntarily’.  See, the giant stresshead I mentioned in my last post kinda exploded.

The first flowery boot dropped on Thursday night at a quiz with our book group friends.  The building was so old, I couldn’t fit through the door without transferring into another chair while Sarge took the tires off mine, and put them back on after crossing the threshold.

Cover of "Mixed Nuts"
Cover of Mixed Nuts

‘There’s still so much to be done,’ I said. ‘I’m so in the wrong job.’

The next morning, between gulp two and three of coffee, looking out at the snow, I asked Sarge for the zillionth time, ‘would you think less of me if I left?’

‘This isn’t your career. You haven’t slept in a month, which means I haven’t.  You’ve changed, and I miss you.  So, quit.’

I went in on my first day, shortly after a front wheel spun out and rolled down the road behind me.  I’d tried not to think my first morning on three wheels would be a metaphor for the rest of my time there.

But I never felt solid.  I like to be good at what I do.  To be sure of myself.  I like conviction in my work voice.  I like to modulate my phone voice so people can’t figure out where I’m from.  But the New York comes out when I’m nervous.  I was never not nervous in this job.  The stress was making my CP physically painful, which hasn’t happened since I had my hips surgically broken when I was a kid.

So, I went in on Friday, and came right out again.  ‘The people are lovely,’ I said. ‘But this isn’t for me.’  I might have got a little emotional,  actually saying, ‘I’ve never quit a job in my life.’

I failed to mention I didn’t care about the job.  That I couldn’t get behind late phone-covers and box-sets that were the wrong region.  I did like helping grannies, though.  And I might have teared up when an old Irish guy was so happy I could help he said, ‘God bless ye, Lorna.  Merry Christmas.’  But I think I cried because it was my time of the month.  Did I mention that?

I will never think of dedicated customer service jobs the same way again.  Points for the people who do them.  You are stronger than me.

Anyway.  I left on Friday, and immediately split the cost of a Shiatsu massage seat-cover with Sarge.  Platinum investment, that.  True story.

I’d been reading the same book for a month.  Finally finished it yesterday, in bed with coffee.

And yesterday was the first conversation with my father in a awhile that didn’t include an existential crisis on my end of the line.  He’s happy that I’ve followed my heart.  My mother says that quitting a job is a rite of passage.  I can dig that.

And I’m getting married in 5 months and a bunch of days.  That’s another one.

Bring it on.

Dancing On The Tables

The first and only time I danced on a table it buckled underneath me.   My friends lifted me, in the chair, onto the table because it was the only free space on which to dance.  I was 18 and liked to dance.  I was also drunk.  All other space that night was taken up by girls dancing around their handbags and boys dancing around girls.

On a crowded dance floor, I am usually considered a fire hazard.  A fire hazard with a perfect view of other people’s asses.  I can’t look at my own without a mirror, but I spend a lot of time looking at other people’s.

Some security guards, who take their job really seriously, have suggested that ‘she might want to stay off the dance floor.’  Not because I’m a bad dancer, I’m actually quite good, but because if there was a fire, those same girls dancing around their handbags would trample me on the way to the exits.  This line of thought has never made sense to me.  I can bust out of a room faster than anyone running on high-heels and swinging a fugly Louis Vuitton handbag.

Before I settled down, which involves staying in more than going out, I’d been going clubbing since I was 18.  Most nights ended with me feeling happy, if slightly claustrophobic.  And even happier to leave The Sea of Asses.

These days, Friday nights consist of Indian food and a revolving collection of somewhat-nostalgic boxsets.  Sarge and I did go out last Friday, though.  To a pub to watch a band play.   Because the band is going to play at our wedding.  So really, you could say, we went out on Friday night to celebrate never having to go out on a Friday night ever again.  Or something.

We got a table up front.   No handbag dancers or asses in sight.  As people got more into the music, they began to dance around me.  Behind me, next to me, in front of me.  And so, I asked Sarge if he wanted to dance.  No.  There wasn’t enough room for me to twirl around myself, so I counted the number of times a stranger leaned on/got caught on the back of my chair.  I call such people Personal Space Invaders.  Sometimes, I need to ask them twice to back off.  I ask them nicely.  The third time, if needed, is not so nice.

A few years ago, a woman was so close that she actually fell into my lap.  I slapped her, and blamed my reflexes.  It was the first and only time I put my hands to anyone in anger/bewilderment/to deflect a fugly Louis Vuitton handbag.

On Friday night, I found myself touching a stranger again.  I elbowed her while getting my jacket on.  It was a reflex.

Next time will be at my wedding!

The Art of Patience

My third cider of the year. For somewhat medicinal purposes.

When I was a kid, people were always telling me to ‘have patience’.  I thought it was some kind of gift, one that I’m still waiting for.  And I’m not good with waiting.

Well, that’s not necessarily true.   There’s a part of me that likes to burn candles and incense and become as blissed out as someone who is into that sort of thing.  Because I am into that sort of thing.  But I also think sleep is  a waste of time.  And this may surprise some people who know me off-screen, but I don’t like doing nothing.  Being idle makes me itch.

Take yesterday for example,  I was on the couch  for hours waiting for spare parts and if that didn’t work, a spare chair.   I’ve been saying I needed a change of scenery, but that wasn’t exactly what I had in mind.  Let me back up a bit, because now I can.

I’ve wanted to see Avenue Q since it was new.  When we were in New York, it was on in Glasgow, so Sarge and I met up with a friend of mine from way back and we saw The House of Blue Leaves.  Great show.  We got home and missed Avenue Q again, because we went island-hopping instead.

Anyway, Saturday’s tickets were an early Valentine’s gift (or as Sarge would say, Happy Arbitrary Day in February), and also third-time lucky.  And the show was every bit as colourful and fun and funny as I thought it would be.  Good times.  Made me want to go back to NYC.  (I know, I still have to write those adventures.)

We went to dinner after the show, and then for coffee.   We contemplated rounding the evening by going to see the new Muppets film and decided that might be over-kill.  And then we went to the pub.  In all honesty, no matter what we do, I haven’t had a bad date since October of 2009.  They haven’t been bad, but they’ve always been interesting.

Back in April, we were on our way to dinner, and I ended up with a rather artistic eyebrow.  In April it was gravel and some glue.  On Saturday, the front wheel fought with a cobblestone.  We soon found out the wheel lost.  But I managed to keep my ass in the seat this time.  And so, to the pub.

I transferred to a comfy couch and noticed that the front wheel was bent underneath the chair.  I can’t even get angles that good.

That's not how they roll.

Essentially on three wheels, I again broke my No Cider rule.  While Sarge  googled  ‘Spare wheelchairs in Edinburgh’.  Even though I am an actual multiple card-carrying wheelchair-user, I don’t have a spare chair.  I’ve had this one for years, and I recycled the last one for parts.  Parts that other people could use.  The one before that is in my mother’s garage somewhere.  Probably next to some yarn, a few lamps and my Poppy’s old tools.

This one has a lifetime warranty.  On the frame.  When a castor bends like this weekend, there’s an emergency call-out service.  The same one I found when a broken bottle shredded my apparently not-so-industrial tires AND inner-tubes last year.  That was the last time I had to be patient.

Back to Saturday, we got a taxi from the pub.  We had trouble even getting one of those.  When we called we mentioned the three-wheeler deal, and it seemed to be fine.  The taxi arrived, and Sarge went off to tell the driver I was around the corner.

Sarge came back.  Not in a taxi.

‘He may not take us, because it’s broken.  He says he doesn’t want to get sued.  He’s calling in to see what he can do.’

‘He can grow a pair and take the fare.’  Yes, I sometimes speak in rhyme.  It’s unintentional.

He did.  I climbed up and sat on the seat and the chair was lifted in after me.

The taxi-driver must have mentioned his ‘insurance’ and ‘the Law’ at least ten times during the five-minute journey.

‘If something happened, you could sue me,’ he said.

‘That only works if the chair isn’t busted before we get in the cab.’ I said.

I hobbled to bed on three wheels.

I stayed in bed while Sarge called the repair dude the next morning.   I stayed put, but my mind did not.   What if he couldn’t get here?  What if he didn’t have the parts?  What if I had to reschedule important meetings this week because I couldn’t get out of the house?

Then, I’d wait.  Because I’d have to.  I would have to have patience.  Because even more than patience, I need working wheels under my ass.  Everything else could wait, including me.

Sarge came back and said that I’d have one new castor or a replacement chair by 3 o’clock.  I could do that.  I went to the bathroom on my three working wheels, and then deposited myself on the couch, using my lap-top on my actual lap.  I might have blasted the Avenue Q soundtrack, and then watched Muppets in Space.  Because it was on.  And I wasn’t going anywhere.

The repairman came in and put my wheel and some new bolts into a castor that wasn’t bent.   After talk of replacement stems and forks, I was back on all wheels and feeling taller.

Sarge and I then left the house.  Because I could.  We went to the new Muppets movie.  This seemed to be a good weekend for muppets.

And today, I drove out to the living room; my laptop is back on the table.   I need to print out something for this week.  The printer is out of ink.  Sarge might pick some up on his way home.

I can wait.

What's wrong with this picture? Shortly after this, I was on the road again..

I Don’t Sleep With My Colleagues

Sarge and I still date. Each other. It’s allowed. And also important. When he’s working late, and I’m not working enough, dating is a way for us to remember what the other one looks like without tired eyes (his) or PMS (mine). These days, our dates are weekend trips to the movies after having coffee that Sarge doesn’t have to make for me. And I promise, these dates do differ from our nights in with fish and chips and a box-set (Northern Exposure, The Sopranos, Spaced, Black Books.)

And so yesterday, high on holiday mochas with whip, we rolled into the cinema to see Hugo. We asked for our tickets and there was a pause.

The wheelchair space needed to be ‘released’ and this required approval from the manager. The manager comes over and eyeballs me, possibly waiting to see if I’ll leap up and proclaim that I only use the chair to get the not-really discounted seats.

‘We have to make sure that the space isn’t booked by someone who doesn’t need it, you see.’ He said this to Sarge, not me. ‘And there’s your ticket. So you can sit next to your colleague.’

‘She’s my girlfriend.’

‘Oh. Enjoy the show.’ He went away. Leaving us with the girl at the counter.

‘Are we colleagues?’ I asked Sarge. ‘Because, you should know, I don’t sleep with my colleagues. And if we did work together, we’d never get any work done.’

‘No’, he said.

And with that we went into the movie. Where I transferred into a seat and Sarge parked the chair into its designated space.

‘Can I hold your hand? Or is that not allowed? Since we’re colleagues?’

‘That’s okay, I think it’s in the contract somewhere,’ I said.

I have CP. I hire a PA to do all the things Sarge, as my boyfriend, shouldn’t have to do. Nor would I want him to. I have been on friendly terms with all my PAs; we have a laugh on the way to my office building. Where I work. With my colleagues. Sarge is not one of them.

Saturday was the International Day of Persons with Disabilities, and this is also Disability History Month in Scotland. I’ve been trying to think of something to say about these important days. On Saturday, I wrote words that had nothing to do with my CP, and then I spoke to my Dad. When Sarge got home from an afternoon spent playing ancient geek games, we had the aforementioned fish and chips and shared our evening with the Sopranos.

And yesterday I went on a date. With my boyfriend. Because I could. I can celebrate Saturday, and any other day, by just being here. Living my life, changing the things I can and hoping for the rest. Because that’s all anyone can do.

I mentioned earlier that I wanted to say something important and worthwhile within my ramble, I guess my two c(p)ents is this. Every disabled person out there has family and friends, people who care for them and support them, without being paid to do so. Some have partners and jobs. We even go to the movies.

After Hugo, Sarge and I came home, where we weren’t colleagues. Sometime in the future we might be, if I break my own rule and we ever open that bookshop we talk about.  But that’s another post.

Us. And I don’t take these kinds of photos with my colleagues.