Day Seventeen

I don’t know about you, but I could really do with a pint. 

My phone served up a random memory from my photo feed today - the lovely sight of my girl manning the pumps behind the Rovers Return. Although I would have preferred it if it had actually served up a pint, instead of a pic. When is technology going to match my expectations? Yes, we’ve got the internet, but why can’t I materialise a Mojito in my hand? Is it too much to ask? And while I’m at it, where the hell are our jetpacks? I blame Elon Musk. I don’t know why; maybe it’s because he looks like a waxwork dummy of Rick Astley that’s been left next to a hot radiator since 1987, but I blame Elon Musk.

My hostelry-yearning has been sparked by lockdown life and my daughter plaguing me about going to the pub. 

“When will the pubs  open Mum? When can we go?”

If social services overheard the number of times she’s asked this in the past few days, I’d be put on both a reckless mother list and a 12 Step programme. 

Perseveration, it’s called. People with Prader-Willi Syndrome often perseverate. It’s when an idea, a word, a phrase, or a question gets stuck in their mind, and recurs, even when the stimulus is no longer there. My girl just can’t shift gears sometimes, and repeats and repeats and repeats herself. Answering the question doesn’t help, even if you’ve got a nice black or white response. She’ll still repeat her query, over and over - and when the answer is ‘I don’t know’, then we’re in for Perseveration, The Director’s Cut.

“So when will the pubs open, Mum? When can we go?”

I probably should explain: her desire is actually for a specific family tradition - various members heading to the pub on a Saturday morning to have a coffee with Grandad. My uncle and aunt are regulars. Different combinations of nieces and nephews of mine intermittently attend. And my daughter is a stalwart of the pub troop. The coffee is often followed by a Guinness for Grandad and half a cider for my girl, possibly not unconnected with the fact that the Saturday Club has also been witness to some extremely ‘interesting’ pronouncements, declared by my daughter at high volume in no filter mode (telling her cousin she needed to visit a sperm bank, being one of the most memorable).

“So when will the pubs open, Mum? When can we go?”

I don’t know, sweetheart. 

The pub club is on hold, like so many things are at the moment. thanks to the insidious Covidious coronavirus. 

Like Covid-19 her perseveration is catching. She keeps reminding me of what I’m really missing: the warmth, the company, the hugs, the laughs, and the simple loving heart of these visits.

Plus the beer.

https://www.justgiving.com/fundraising/carolyn-s-2-6-challenge1972

Related blog posts: Corrie, Baster

Song is Amos Milburn - One Scotch, One Bourbon, One Beer

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. And while you're at it, write to Elon Musk, would you, and get him to knock the space travel on the head and invent a beer materialiser, please. 

Corrie

“You’re Tracy, aren’t you?” my daughter asked.

Tracy Barlow - or rather Kate Ford, the actress who plays her in Coronation Street, nodded in reply. “Yes, I am. It’s very nice to meet you.”

My girl nodded back. “Yes. You look like Tracy.”

Kate laughed. “I should hope so!” (Although I couldn’t help thinking that Kate did originally take over the part from another teenage actress who went upstairs in a strop and came downstairs as an entirely different person, as people sometimes do in soaps).

Meeting Kate/Tracy was a high point in a day of stratospheric high points, as me and my awestruck girl went on a tour of the Coronation Street studios and set. 

It's not normally open to the public, but we had managed to wangle a personal VIP tour (by lucky virtue of a relative being friends with someone who’s connected to The Street and who pulled a few strings, or shook a few cobbles, or whatever the Weatherfield saying is for getting us through a normally firmly-closed door.

We were welcomed by ‘duty officer’ David - who proved himself to be an avuncular, astute, and wickedly funny tour guide.

He patiently explained how some of shops and homes were just fronts, with their insides in the indoor studios. (This whole issue properly boggled my daughter’s mind, despite seeing the physical evidence right before her eyes). He took my girl into Underworld, where she pretended to sew a pair of knickers. He watched, amused, as she studied the menu in Prima Doner (checking for spicy options, of course). She was fascinated by the fake food in the counter display fridge at Roy’s Rolls (are you spotting a Prader-Willi Syndrome pattern, here?). He let her ‘pull a pint’ in The Rovers Return. He showed her the ‘lucky’ mascot stuffed toy cat that has nestled in amongst the crisp boxes for years. And he told her of the superstition that actors have not to go through a certain pub door - because legend has it that their Corrie street career will then be over.

In amongst the perfectly-judged, straightforward explanations to my girl, David shared some more subtle insights with me - leaving me flabbergasted at the care, attention, and astonishing levels of detail in the set design and dressing, where colours, textures, and comic or poignant background details are painstakingly matched not only to the characters, but to the tone of particular scenes and storylines.

At one stage we peeped our heads round a back alley before realising filming was going on further along the street. We had to jump back out of sight, shushing and giggling at the idea of our shocked little faces appearing in the background of a dramatic scene. It would have been the best ever game of televised Where’s Wally, though, wouldn’t it?

We even got to lurk amongst the crew, watching split screen monitors show an actual studio scene being filmed in front of us. The acting seemed nondescript, flat, and distinctly underwhelming, but when we saw the playback on the screen just seconds later, the drama was transformed, with the close-up camerawork revealed powerful emotions, delicately and skilfully played. It was a revelation. (I’m not sure that my girl appreciated it in quite the same way, but by ’eck, she was mesmerised at seeing something ‘instantly’ transported to the ‘telly’). She assumed it would be on tomorrow night’s edition, so David had a little bit of explaining to do about how this was a scene scheduled for transmission in January next year. I’m not sure she quite got to grips with the time travel aspects of this, and I have a feeling this may be a subject she will wish to discuss with me, ad bleedin’ infinitum. It may ultimately drive me to drink. Newton & Ridley Best Bitter, probably.

We were there for an hour and a half. My daughter smiled for all of it, and for most of the four hour car journey home, as she clutched her visitor’s badge, and her ‘goodies’ from David: a Newton & Ridley beermat, a Nick’s Bistro serviette, and a Corrie key ring. 

“I loved it, Mum,” she said. “I know,” I told her. It was obvious to me and everyone on set who had seen her poodling about today, wringing her hands excitedly. It had been written all over her beaming face.

Song is Skids - TV Stars. All together now, "ALBERT TATLOCK!"

Related Post: Samples

Samples

It’s been a year of hospital trudging, and last week we had two appointments in three days. The first was a look-see, x-ray and pre-op assessment in preparation for my daughter having four wisdom teeth out.

She impressed the doctor (or should that be dentist? Well, I’ll go for Hospital Tooth Guy). “What job do wisdom teeth do? If they don’t have a job, what’s the point of them?” my girl asked. “That’s a very good question,” he replied. He was right, it was (if you ignore the slightly fascist undertones). He told her a little story about how our ancestors had bigger jaws, and she nodded along, happily.

Next up was Wednesday’s Glucagon Stimulation Test. It sounds like a noisy Peel sessions band, but it’s not. It was a pituitary gland test to see how much growth hormone my girl produces naturally. The answer to this, I’m sure, is ‘not enough’, as is common with most other people with Prader-Willi Syndrome. She used to have a daily injection but this was stopped a couple of years ago. I still for the life of me can’t remember quite how I went along with this decision at the time without challenging it. I must have been sleepwalking, or drunk, or something. Although my daughter wasn’t growing any taller, due to her spinal fusion, there is a lot of data to suggest that people with PWS benefit  in other ways from continuing to take GH (it slightly increases muscle tone, for example). So I don’t think it was a good idea to stop, and I’m hoping this week’s test will show she needs to start her daily injections again.

The nurse who oversaw the three hour test was an old friend from the endochrine clinic. She immediately fetched a doctor from another ward to put in the cannula on the back of my daughter’s hand. “I’m not letting the doctor on this ward today do it - your veins are so tiny, we need our Top Man,” she whispered. She was right. Top Man hit it first time.

There then followed an injection to deliberately alter blood sugar levels, to stimulate the release of natural growth hormone. And then some blood samples being drawn. And some more. And more. Blood sugar dipping and rising, and all the time - did I mention? - my girl was fasting. Yes, you got it right - no food from midnight. No breakfast, no morning snack, no juice, no nothing.

When she was beginning to get super antsy about her lack of food, I pulled out my trump card.

“I’ve got something to tell you. A surprise. Something you’re going to get that you’re not expecting!”

“Is it dinner?”

“No, it’s not dinner.”

“What is it, then?”

“Well, your very clever aunty knows someone who knows someone who works on Coronation Street, and guess what - in three weeks’ time, you’re going on a special personal tour of the set!”

She clutched her hands together and closed her eyes in delight. And then, half an hour later, when the nurse gave her permission to eat, a ham sandwich elicited much the same response.

Song is Sam Dees - Child Of The Streets. Disclaimer: contrary to what he says in the first line, her father is not a 'pusherman'. And I am not a 'solicitor' always on the corner, thank you very much. And that bit about the brother possibly ODing? God, I'm beginning to regret picking this song. It's the 'Street' bit I chose it for, OK? Coronation Street. Blimey, have this instead: