#greatbritishsummertime memories friends leighnetwork mitochondrialdisease blackpool blackpooltower disabledaccess lightupformito

[leighnetwork]

‘Oh, I do like to be beside the seaside'… of Blackpool.

Ever since I read about the elegant dances that took place in Blackpool Tower, I’ve wanted to go there. With its ornate ceiling and live music, the fresh sea air tinged with salt, the hustle and bustle of a seaside town in the height of its heyday of 1950’s Britain- and the fashions! I loved the descriptions of the frothy skirts that fluffed out as characters twirled, jumped and danced the night away. I’ve wanted to taste the air and hear the laughter of kids as the Irish sea tickles their feet for the first tine...

I’d imagined going up with cousins, but, of course, they grew too old for things like funfairs- preferring more exotic trips abroad. I’d envisioned a girly weekend with those friends who I’d known my whole life, who had stuck by me through moving across the country aged 11, had sent letters that kept me going when in hospital aged 12, who weren't ashamed to be seen out and about with me- a wheelchair user- as so many school friends were.

They stuck by me throughout the Leigh’s diagnosis, with only one drifting slightly. They supported Leigh Network with gusto! However, the test of friendship came when I lost my sight. In the blink of an eye, I lost what had, up to then, been a very good friend. I never thought she'd be the one to turn her back on 15+ years of friendship. But she was. Lol, it still niggles me that I never had a thank you text from her for the birthday gift I sent, nor a reply to my emails enquiring about how she was. Anyway, I hope she is well, and if she ever does want to nudge the door of friendship open, I will gladly welcome her back. I am, of course so, so grateful and thankful to those friends who have stuck by me as I face this new challenge of negotiating life blindly. I hope people see I am still the same funny, creative me I always was…

…Anyway! Wandered off on a tangent there, didn't I? Back to Blackpool!

When our Mito/ Leigh Network friends asked us to join them for dinner in Blackpool, how could we say no? When my mum and I began researching hotels in the area, we discovered a peculiarity on the internet.

A room is advertised at, say £45. But, when you phone up to check the access (we learned to do this as in the past, one B&B called itself ‘Accessible’ although it had 2 steps to get in!), when they hear the phrase 'accessible room', a £45 room becomes £70! I really do not know why businesses feel they can charge an extra £25, just because a person is V.I. and/ or a wheelchair user. Have they not heard of government cuts and the way the ill and disabled are being penalised for their health? We had no choice but to pay the additional charge for space to turn my wheelchair.

We arrived at the station on the hottest day of year: the sun was shining, and the temperature was rising, so we decided to stroll to The President Hotel.

The warm temperature dipped as we walked along the prom that stretched out across the Irish sea. Grey clouds tumbled across the sky turning the pristine blue sky dark, grey and foreboding as silvery clouds worked with charcoal ones to scrub the blue sky. As light rain speckles turned into pelting rain splodges, thunder growled angrily above us. We had found a shelter to huddle under, but as the rain got a bit lighter, we darted out to carry on our journey of finding the hotel. Racing along,  I glanced up and saw it - a crackle of white lightening.  'Can you go any faster, Faye?' my mum called over the  roaring thunder.

I picked up speed as the grey clouds cleared to white and the temperature rose again. What a beautiful storm.

The street access was very good, with dropped kerbs and beeping traffic lights aplenty. As I steered up the ramp of the hotel, an irony hit me - on the hottest day of the year, when London was bathing in 38 degrees, we were bathing in rain, being drenched in a storm, lol.

We checked in then squeezed into the small lift, but were glad for the lift, as so many places simply don't consider it. Our room was nice, despite being directly next to a staircase (with no signage to warn guests). The positives were: it had friendly staff, a turning space in both the room and bathroom and free WIFI. And the dining room overlooked the sea!

After relaxing with an audio book, we heard from our friends. They were on their way, so we headed out too. A warm breeze picked up, giving the  grey-blue-golden sky a dusty glow. We were about halfway to the pub we were meeting in, when I felt little pricks on my bare arms and legs . ‘It’s raining!' I called to mum, as the little needle-like pricks turned into big, fat raindrops. My mum hurried to put up the umbrella. In the distance, I heard thunder rumble deeply. But, just as quickly as it had started, the sun came out and a warm calm returned.

We have met with Dave and Christine at the last few Newcastle Mito Patient Days. They are a lovely couple. We have known Cheryl, Gary and their 28-year-old daughter since they came and attended  our Leigh Network meeting in Liverpool in 2014 and since then, our friendship has grown.

As we all caught up on each other’s news in the Weatherspoon’s seafront pub, or meals arrived. Alex's baby niece and young nephew provided us all with entertainment- bouncing and dancing round our table. Like a rocket, H zipped around and E had us all laughing with his boundless energy!

After finishing our meals, we strolled along to the funfair on the pier. The sun was out again now, and a warm breeze blew as we chatted on our way to the pier.

Shrieks of laughter and fear filled the air as fairground music sang. The colourful rides whooshed and bounced, swinging through the sea-salty, candyfloss sweetened air. Cheryl's husband took his thrill- seeking grandson on the rides, Dave, Cheryl, Alex, my mum and I cheering him on as he gleefully squealed, whilst the other kids cried to get off!

We slowly ambled back along the prom, our evening with friends coming to a close. As the temperature dropped slightly, we all hugged and said, ‘See you later’.

We picked up a portion of chips on our way back to the B&B and my Mum noticed the fairy lights along the prom that lit up, changing colour as night fell.

The following  day, we explored the famous Blackpool Tower. Although the lift lacked an audio announcer, the general access was good- though staff could do with being aware of invisible illnesses- and an audio-described tour would be appreciated.

We went up to the very top. Out of the window, I could just see an expanse of beautiful blue sky. It seemed endless yet confining and imposing. At the very bottom of the window, I could just make out a strip of golden-brown colour, which I assumed to be sand. The tower has a skywalk- it’s a floor made of see-through glass- to give you a new perspective on the sea-view. Below, it just looked grey and cloudy to my V.I. eyes.

We then headed down to the well-renowned and internationally recognised Blackpool Tower Ballroom, where the Strictly Come Dancing Special takes place.

The cosy, warm, darkly lit ballroom felt like we had stepped back in time, with its ornate, intricately tiled ceiling and the pink and orange sign that adorned the wall behind the dancefloor to remind us of where we were. On the dancefloor, the atmosphere intensified as a couple of professional dancers tangoed and rhumba’d their way around in time to the organ being played- live-  by the musician.

Whilst my mum watched and I listened, we were reminded of my Nan, who spent much of her youth and married life in dance halls.

When the professionals took a breather, audience members were invited onto the dancefloor. We were reminded of the past times and courtesy of my Nan’s generation, when an elderly gentleman asked my mum to dance the waltz. Unfortunately, due to my mum’s lack of dancing experience, she had to turn his kind offer down (she was also scared of standing on his toes).

After being unable to convince her, he walked off to ask another who did fulfil his dancing dream. We sipped the remainder of our drinks, watching/ listening to the scene. At the end, the organist thanked the dancers and audience, before, as if by magic, disappearing into the stage, as a pianist appeared. We enjoyed a few more performances then headed off to catch our train after popping to a few shops.

We really enjoyed our first trip to Blackpool and look forward to returning!

Since then, we at Leigh Network were delighted to hear Blackpool Tower took part in Global Mitochondrial Disease Awareness Week by glowing green for mito! Well done Blackpool Tower!