Sicily

In July 2019 I was living in the nursing home but the sale of my flat was going through and my pension lump sum been paid to me so I had to spend some money before the council got their hands on it all. I decided they couldn’t punish me for booking a holiday.

After some research I found Limitless Travel who offer holidays for disabled people in accessible resorts with one-to-one care packages if needed (which I do). https://www.limitlesstravel.org/

  • Would I choose to go on an organised group holiday? No.
  • Would I choose to go on an organised group holiday with disabled people and carers? No.
  • Would I like to spend thousands of pounds on a holiday that would cost an able-bodied person hundreds, maybe £1000 or so? No.
  • Is that extremely unfair and out of reach for many people with disabilities? Yes.
  • Was I fortunate to be in a position to be able to afford the holiday? Yes.
  • Can I travel any other way? No. The holiday was booked.

Fast (and slow) forward through a pandemic and the flights were booked for May 2022. As the holiday approached my anxiety increased. Points one and two above were starting to become a reality. I had to keep coming back to the final point. Never go anywhere or do it this way.

Packing was a mission. I can no longer just throw a few clothes in a suitcase. I have to consider every item I need on a daily basis for my care. I began with a list of the lists I needed to write and went from there. With a great deal of help from my PAs I was ready to go.

At 4.30 a.m. I was in a taxi on my way to Heathrow Terminal 5, away from familiar surroundings and carers and finally adventuring again. It was exciting but there was no getting away from that feeling: organised…disabled…group…trip…

I won’t dwell for long on the outward journey. There were no high points. The low points were not wanting to sit in the miserable Special Assistance room so going about 10 metres away to the windows and five minutes later getting a phone call asking where I was. I’m 49, I’m right here, I’m fine! All I wanted was a little mosey around the airport, a coffee and something to eat but I was on an organised, disabled, group trip.

I am still in contact with the top people at Heathrow about the shocking lack of organisation and manual handling knowledge from the Special Assistance staff. The captain took the time during the flight to come and give me an email address to complain to. The way back was no better but that is all another story.

About 14 hours after having left home I was in bed having had my first and hopefully last ever panic attack. It had not been a good start to the holiday.

I met everyone properly at breakfast the next morning. I hadn’t eaten and had barely spoken the day before. When I left my hotel room and was welcomed by warm air, cloudless skies and sunshine the trauma began to evaporate. I had made it to Sicily.

After a cup of ginger tea (yes, I had thought to bring my own teabags) and a bowl of cereal with soya milk (yes, the wonderful chef had got the vegan memo) I began to feel myself again.

I was very conscious of my probably pretty unpleasant demeanour of the day before and having missed dinner with everyone, so was relieved to finally feel like joining the group with a smile on my face. I think they were probably relieved too that they didn’t have some miserable, stressed out woman with them for the week!

I had wondered whether I might meet another single, disabled, childless woman on the trip but actually there was only one person who talked about their children and I think everyone else was childless/childfree and it wasn’t a conversation point at all, which was really refreshing.

My travel companions were 4 men. One my age, one 10 years older than me, another 30 years older and another 40 years older. There was supposed to be a fifth but he just didn’t turn up (adding to the chaos at the airport). There were three carers, one male, two female.

It was nice to say hello properly to everyone. They were all quiet, gentle souls and we spent a pleasant week together, mostly talking at breakfast and dinner. There were no dramas and no lasting friendships. I have a photo of us on Mount Etna. I look at it and think apart from the wheelchair I don’t fit into that group at all.

I am very happy to say there was one female carer I got on with really well and her company was my saviour. I think to some extent the feeling was mutual. We may have kept in touch if we were closer geographically.

After breakfast we left the restaurant which had a large terrace beside it and once again I was in the sunshine. I turned towards the sun and realised I could see the sea in the distance. This spot would be my happy, peaceful sunbathing corner for the rest of the week.

It was then time for our first excursion. Even that word makes me cringe! However, I was looking forward to exploring a bit of south-east Sicily, where we were staying. We were off to Siracusa. This is the part where I should tell you about the history of the town, but I don’t know it. Google if you want!

We had an extremely friendly, helpful, do-anything-to-make-our-trip-comfortable-and-a-success tour manager. His family had opened the fully accessible resort. https://www.kikkivillage.net/.

We were boarded onto two minibuses and the four of us in wheelchairs anchored safely in place. We were dropped off at the port of Siracusa and wandered along the sparkling blue Mediterranean in brilliant sunshine. After the previous day it all felt slightly surreal.

I immediately separated myself from the group, choosing to be as close to the water as possible while the others followed a tree-lined path parallel to the waterfront. We came to a beautiful courtyard with huge trees, dangling vines providing shade.

I then went on ahead as the path became busier with tourists. Taking in new sights and sounds it began to sink in that I was abroad, on holiday, somewhere new.

My stress levels rose again as the group tried to find somewhere for lunch along the waterfront. A group of eight with four wheelchairs is not straightforward. Two restaurants later I had some food and told the carer on my wavelength I had to get away on my own.

The relief of leaving the group behind was wonderful. I was off! I went up and down side streets with lots of little tourist shops and stands. There was a large square full of beautiful Sicilian cream coloured buildings. It gave me a small amount of time to feel like myself again and to do what I would want to do if I were on my own. It was probably no more than 15 minutes but I needed it.

We visited the cathedral and I got in the way of a religious ritual around a relic of some sort in complete ignorance until I turned my chair around and saw a big procession going on behind me.

It was then time to start heading back towards the pick up spot. We had visited Siracusa. It was all a bit mad and I would happily have spent another couple of hours there but it was hot, sunny, picturesque and Sicilian, so definitely a change from home.

Dinner each evening was a four course meal with wine on the table. I had decided I would be vegetarian rather than vegan for the week but there was no need. The chef prepared me grilled aubergine, courgette, peppers, fresh tomatoes and salad, spinach, pasta, gratins and arancini with fruits and sorbets for dessert.

I rarely have the opportunity to drink and really enjoyed having a couple of glasses of red wine every evening. After 13 hours or so in my chair compared to my usual 4 or 5 I was always ready for bed and slept well. Another packing success was my echo dot so that I could check the time and listen to my audiobook.

The next day was supposed to be a visit to an accessible beach but it was closed. I have no idea how you close a beach but this one apparently was. We went instead to Marina di Ragusa, a long promenade along a beautiful, sandy Mediterranean beach.

Once again, I was straight off on my own and found a spot where I could get really close to the sand in my wheelchair. I sat and absorbed the view and sunshine. The group soon caught up with me and the search for somewhere for lunch began again.

I turned to carer on my wavelength and said I don’t want to do this. The joys of the one-to-one package meant I didn’t have to. We left the group and went off to a small square with restaurants and gelato shops. I had a tub of chocolate gelato with strawberry sorbet and it was amazing.

We then wandered back the way we had to come and I returned to my spot by the beach and was left alone to sunbathe for about half an hour. Bliss!

We kept wandering, stopping at tourist stalls and I bought myself some earrings. This is what being on holiday should feel like. We then left the beach area and carried on to a quiet marina full of yachts with barely a soul around. I turned my chair to face the sun and we chatted about our travels. It was just lovely.

I had another 15 minutes by the beach on my own before we left. Today had definitely been more like it. A day by the sea, on a timetable, but more like it.

The following day was, I think my highlight. We went up Mount Etna, the most active volcano in Europe. It’s extremely impressive both from a distance and close-up. I loved the huge black lava flow landscape that started in the city at the base of the volcano and grew more and more stark as we climbed the hairpin bends.

It was my fourth volcano: Lanzarote – a dark but unexciting landscape with little man-made craters with a grape vine growing in each one up the hillside. I had a terrible volcano wine hangover one day! The Azores – a lush, green caldera. Mount Fuji – seen faintly from a distance from Tokyo. And then Mount Etna.

The frequency of eruptions over the past 400 years and slow-moving lava meant the landscape was massive and black. We saw a rooftop sticking out of the lava. People don’t get killed in the eruptions as they are so slow moving.

I loved the landscape and being so close to the elemental forces. Unfortunately, we couldn’t get right to the top as the chairlift isn’t accessible. Apparently, they tend to buy cheaper chairlifts instead of investing in state-of-the-art new ones as they get destroyed! But the sights and the views from the level we reached were amazing.

There was your obligatory cluster of souvenir shops and I bought my obligatory semi-tasteful fridge magnet.

The following day was a much needed empty day. One of my wishes for the holiday was to get back in a swimming pool for the first time since 2017. However, the pool was unheated so there was no way I was getting in!

We were the only people staying at the resort that week so I was able to find quiet, sunny spots on the verandas of the accommodation that had the best sun at the time. Most of the time though I was on the terrace next to the restaurant where I could see the sea and move in and out of the shade of an olive tree and listen to the birds.

I was really able to switch off and relax during this day. I had lots of time to myself and I’m definitely cold blooded so soaking up 30°C sun and thinking my thoughts or nothing at all did me good. I could have done with a week of that!

The final excursion was to Modica, an amazing town built on two sides of a valley. It definitely doesn’t scream wheelchair accessible.

However, we stopped at the panoramic view point over the town and happily our tour manager had brought a makeshift ramp so that we could get onto the pavement to see the spectacular view. The history involves Greek, Roman, earthquake, baroque. Google will give you more.

Modica is famous for its chocolate and we went down into the town for a chocolate tasting. The chocolate is made of cacao butter, raw cacao and natural flavourings. The tasting was fabulous and I was a 49 year old in a vegan sweet shop!

It was then another stressful group lunch for which I took a table to myself with carer on my wavelength.

There was then some rather kindly but chaotic organisation by the chocolate shop owner taking us up in a lift to the cathedral. This was followed by lots of arranging of different ramps to try and get us into the cathedral. I was not able to get in, which on one hand was a shame but on the other meant I could just find a sunbathing spot and ignore the chaos going on behind me.

The whole cathedral visit took up most of the afternoon so I didn’t get to see much more of the town. Once we were down the lift again I dashed off on my own up and down a few side streets while the others had a cup of coffee. It was then time to head back.

The final day was more sunbathing at the resort, packing and a barbecue with traditional entertainment which (probably thankfully) didn’t turn up.

I would love to have had another day out where I could take my time to explore somewhere on my own at my own pace and another day of just sunbathing and relaxing.

So, there is a lot to reflect on from my experience. I made it abroad, I discovered somewhere new, I enjoyed a week of hot sunshine. Travelling on an organised, disabled, group trip is certainly necessity rather than choice. It took it out of me financially, physically and emotionally.

I feel like I skimmed the surface of immersing myself in Sicily and experiencing the full relaxation I needed from a holiday. There were definitely wonderful parts and they were more measurable in minutes at a time than hours.

I’m glad I went, I’m grateful that the experience was made accessible to me and I am resigned to rather than accepting of the fact that this is the way I can access travel experiences now. I think I will always feel like I do when I look at the group photo on Mount Etna. It was a very strong feeling of being the person inside the person in the wheelchair.

I am sure I will do it again and at least I know what to expect now. My life and travel experiences continue to grow. Grazie mille Sicilia e arrivederci.

My heart is at home in: Tokyo. Part four.

My heart is at home in: Tokyo. Part one.

My heart is at home in: Tokyo. Part two.

My heart is at home in: Tokyo. Part three

After returning from Tokyo in 2015 my life progressed, my career progressed and my MS progressed.

X leaving me was the best thing that could have happened and I wish I had realised that many years earlier. I had fun internet dating but didn’t meet a new partner.

My family was rocked by the death of my father although coping with the grief pulled us even closer together.

I loved my new job. It was a complete change from classroom teaching and mainstream education. A steep learning curve with lots of challenges and amazing colleagues.

My care needs increased although I still worked full time, swam every week and had a full social life. I employed PAs who helped me get up in the morning and out of the flat for work, get out and about on the weekends and take me swimming and carers who put me to bed at night.

By 2017 I was using a powered chair for work and out and about. I had more adaptations to my car and continued to drive everywhere. I was able to employ a full-time support worker through Access To Work.

I hadn’t stopped travelling. During the summer of 2015 an old school friend invited me to stay with him and his family in Toronto. I stayed with friends in Germany. I went on a beach and safari holiday to Kenya on my own in 2016, managing with help and support organised along the way and the kindness of hotel staff. I had a great holiday in Majorca with Mum in June 2017.

One sunny day in early July 2017 I was at a work conference and over lunch outdoors I asked my support worker/PA whether she would be up for travelling to Tokyo with me. We got on really well and I knew I would be comfortable travelling with her.

So much of my heart and soul was still there and yearned to be back in the city I had fallen in love with. The once in a lifetime trip was not enough. I couldn’t do it without care support and it was a big ask, so I was over the moon when S said she was up for it.

Instead of months of planning like last time we sat on my sofa with a laptop, glass of red wine in hand, took a deep breath and booked the flights and hotel in one evening. There was no need for nervousness about the unknown, just pure excitement about finally returning.

A few weeks later in August 2017 we were on a plane to Narita airport. I listened to Dawn and Merry Christmas Mr Lawrence once again as we landed. This time I can write using ‘we’ as it was very much a shared experience.

Accessibility wise things were a little different to last time. I was in a powered chair so was more independent getting around but my mobility had reduced so I needed more help with everything else.

The subway, lifts and toilets were a constant theme throughout the trip. All the subway stations were accessible by lift but on leaving the station the lift was very often a long way from the entrance and you would come up on some random back street at least a block away from where you expected to be. Google Maps were essential!

Using the subway in a powered chair was amazing. In the manual chair I didn’t need a ramp as I could be tipped up and down the step in and out of the train. In the powered chair the guard at the turnstile would ask us where we were going and then a guard would meet us and escort us down to the platform.

We would then be met by another guard who would have the ramp ready when the train arrived. Whenever we pulled into our destination there would be a guard waiting with a ramp. They were all dressed in smart attire with a cap and white gloves and bowed before and after helping us. We travelled the subway a lot and not once was there no one to meet us.

There are plenty of accessible toilets in Tokyo and something I wish was common practice in all countries is that they have sliding doors, which are so much easier to negotiate when you are in a wheelchair or using walking sticks.

However, I needed S to help me use the toilet and the sliding doors opened and shut automatically at the press of a button. This made it impossible for S to sort me out and then leave the cubicle without the sliding door opening fully exposing me to the public before it closed again.

Therefore she had to stand in the corner with her back to me, which reminded me of the final scene of The Blair Witch Project and may me laugh every time. We laughed so much throughout the trip. It couldn’t have been more different to last time.

I knew I needed to get back to where the first trip had started so we went to Harajuku Station. This time, we turned left out of the station into trendy Harajuku and to the fabulous Starbucks at the top of the Omerosando department store on the recommendation of a friend. It had a great outdoor terrace.

Once we had our coffee it was time to deal with the unfinished business. We went back up the street, crossed the road and turned the corner to the Meiji shrine with its huge wooden torii gate. I saw it and sobbed and sobbed. I hadn’t expected that at all but realised it was my heart and soul, at home, healed and unbelievably happy.

Another day we went to Shinjuku so I could finish things there. I went to the street outside the bar which was on the top floor of the building where X played his gig on the last night of our trip. I thought my thoughts then headed down to the hotel. I sat outside the entrance and relived the final few minutes as we had left the hotel that dreadful morning. Job done. I was at peace.

The hotel S and I stayed in was in Asakusa, a few minutes away from the Sensō ji temple, one of the biggest and most popular with tourists and for good reason. I had spent an afternoon there before but could now go there whenever I wanted from the hotel. Several times times I went there late afternoon/early evening when it was quiet to just sit and think. It still amazes me the peace and tranquility that can be found in the middle of a city like Tokyo.

There are huge lanterns at the entrance. You then make your way past rows of stalls selling the type of souvenirs I absolutely love. Little Japanese dolls and keyrings, Hello Kitty fridge magnets, expensive chopsticks. You name it, if it’s synonymous with Japan it’s there.

Then you enter the grounds of the ancient Buddhist temple in all its glory, large incense burners filling the air with fragranced smoke. The temple is huge but inside it is a place of peace and spirituality. People clap their hands, bow and make their offerings of coins and prayers

The highlight of the trip were two evenings we spent in Asakusa. One evening we had been out for food and wanted to carry on drinking. It was quite late and we went to a bar but it was closing. A man outside made the international sign language of a drink to which we nodded. He tipped his head back and pointed his thumb over his shoulder. We made our way in the direction he had signalled.

After a couple of minutes of walking we came across a tiny bar – more of a kiosk really. It was selling Prosecco and wine. There were a few chairs on the street in front of it and several people having a drink. It was perfect. We ordered wine from the young Japanese guy running the kiosk and settled ourselves amongst the seats. Within a minute a young woman came over to us and started chatting in fluent English.

The bar owner and all the people drinking there were friends and we were introduced to everyone. Y had lived in America, hence her perfect English. We had a great evening and when we left she told us about the local Obon festival that was happening the next evening at a nearby temple. It was a memorial and to raise money for the victims of the tsunami on its 6th anniversary.

We arrived early evening to find a courtyard set up with lanterns and a large structure in the middle with a huge Taiko drum on top. There were gazebos with seating under and lots of little food and drink stalls.

We made our way into the temple and sat and listened to the Buddhist monks chanting in mourning for the victims. It was beautiful and we stayed and soaked up the atmosphere and architecture for quite some time.

Heading back outside, the courtyard was filling up with locals young and old dressed in yukata. There was a performance of Taiko drumming by children which had me in tears of joy.

We bought drinks, sat down under the gazebos and chatted to the locals, particularly elderly women who were interested in finding out about us in their limited English and our non-existent Japanese. We were the only western tourists there. And so began the most memorable and magical of evenings.

As the sun went down the Bon Odori dancing began in earnest. Traditional music played and everyone gathered to dance in a circle around the Taiko drum. Most people knew the dance moves to every song but there were many who were copying and learning as they went. I was encouraged to join in my chair and did so willingly!

We drank large amounts of Prosecco from the stall run by the guy who owned the kiosk we had stumbled across and joined Y and her friends for an evening of fun and laughter together. The photos of us all that evening are full of joy and make me smile every time I look at them. It was hands down my best experience of Tokyo and its people.

I can’t believe how much we saw and experienced that week. Everywhere we went was an adventure. We explored the shops, sidestreets, parks, cafés, bars, restaurants, shrines and temples of Asakusa, Harajuku, Akihabara, Ueno and Shibuya. We went to the coastal town of Enoshima with its beautiful shrine at the top of a narrow hill lined with shops.

We got up early one morning and went to the sumo stable to see if we could catch a glimpse of the wrestlers training through the windows. There were several others waiting outside as well so we waited with them but unfortunately there was nothing to see. They used to show sumo wrestling on Channel 4 when I was a teenager and I loved it. It would be amazing to see a live match.

On the recommendation of another friend we visited the shopping street where restaurant owners buy their knives, every manner of cooking utensil and best of all the plastic food which is used as a display in the window to show what they serve. It is wonderfully realistic. One of my favourite fridge magnets is a nori sushi roll I bought there.

The weather in Tokyo in August is hot and humid. It was around 30° C and the air was soft and warm. I loved it. Whenever we left the air-conditioned hotel each morning I breathed a huge sigh of contentment. S felt the complete opposite but she walked miles with me around the city.

There were also torrential rain showers and we got soaked at least once. We found refuge in shops, shop doorways and on one occasion a little Italian bar on a side street where the owner served us a gorgeous platter of cheese, bread and olives with red wine.

We ate amazing ice cream, were served sake the traditional way where the cup is poured until it is overflowing to show generosity, and enjoyed all sorts of bizarre looking sweets and snacks.

On the last night around midnight we went in to a 24 hour store just around the corner from the hotel. It sold everything from food to dressing up clothes to rubber chickens to sex toys! We stocked up on as many sweets, snacks and chocolates as we had room left for in our suitcase.

I had a completely different experience of Tokyo to the first time. That time it was cultural, beautiful and awe-inspiring and very much a trip of my own. This time it was all of that but also fun and sociable and to share it with S who was enjoying it as much as me was wonderful.

I will be forever grateful to her for coming with me, helping me as much as she did and enabling me to enjoy the city night and day. I am happy to say we remained friends and she is now working as my PA again.

The trip was over and my love for Tokyo had grown even more than I thought possible from the first time. Revisiting places was wonderful and discovering new ones was exciting. I have to accept that I am highly unlikely to be able to visit again and it’s probably best that I didn’t know that when I left for the second time.

I have so many wonderful memories and more stories that could be told, but they are mine to treasure and revisit whenever I want.

It is a place that holds a large part of my heart and soul and I am so glad I followed my dreams there. Mending what was broken by going back for a second time was absolutely the right thing to do. I am unashamedly in love with the city, enamoured by anything to do with Japan and my heart is most definitely at home there.

Bon Odori
A packet of sweets
Shibuya crossing

My heart is at home in: Tokyo. Part three

My heart is at home in: Tokyo. Part two.

Beginnings and endings were a big part of my life in those few weeks. The fact that the cherry blossom bloomed on the day I arrived and was falling off the trees when I left certainly feels significant on reflection.

It was a time of change when I went to Japan. The day before I travelled was my last day as a secondary school languages teacher and full sad of goodbyes. Two days after arriving home I began my new role as a non-teaching assistant head in alternative provision for reception to secondary school aged pupils not in mainstream education.

A week later my 15 year relationship was over. That was my 42, childless, single and disabled moment. Life was going to be very different. Luckily my new colleagues were wonderful and I shared an office with someone who had lived in Japan. We could talk about our love of Totoro and laugh and cry in equal measure. I am so grateful for her warm welcome and friendship.

After my first breakfast at the hotel (ashamedly the European continental breakfast rather than the traditional Japanese pickles and savoury options) my tour guide for the day was waiting for me. Hara-san was a smartly dressed elderly gentleman who took his job seriously and had planned the perfect day of Hanami (cherry blossom viewing) for a vegetarian in a wheelchair.

He was as thrilled as I was that it was the first day of Hanami and we set off for Shinjuku Gyoen, a stunning park full of cherry trees, Japanese gardens, traditional buildings and bridges all against the backdrop of shining, modern skyscrapers. It was as if someone had looked into my imagination and brought it to life only a million times better.

Hanami is a very social event. Family and friends get together to immerse themselves in the blossoms, taking photos not from a distance but amongst the hanging branches with the flowers against their faces.

It is taking pleasure in the variety of colour of blossoms from white through to deep pink and the contrast between the flower and the almost black branches of the cherry tree. The beauty of the trees and the surroundings was breathtaking.

The day continued with more Hanami spots, sightseeing and parks around Tokyo. Hara-san was such a gentle soul who obviously loved his city and shared that love with me. I absorbed every bit of it.

Hanami time is also party time. Once I had said goodbye to Hara-san and the sun had gone down I made my way to Ueno park. Leaving the subway station I crossed the road, turned the corner into the park and burst into tears.

Ahead of me was a long pathway of lit up cherry trees in full blossom with crowds of people promenading up and down. Groups of friends sat on tarpaulins under the trees drinking large amounts of beer and sake and the party was on! The atmosphere was amazing and a westerner in a wheelchair attracted plenty of friendly people wanting to find out if I was having fun, where I was from and what I thought of Tokyo.

Move away from the main party area and down to the lake and there are lanterns, food stalls, shrines and almost more beauty and wonder that it is possible to take in. It was a truly magical evening. Tokyo showing its respect for ancient religion and tradition and enjoying the buzz and energy of modern life.

The rest of the trip was highlight after highlight. The view from the Government Tower Observatory was breathtaking. The megacity looked as if someone had dropped a huge bag of grey and white Lego as far as the eye could see. Mount Fuji in its enormous splendour was visible faintly in the distance.

I visited Shinto shrines and Buddhist temples, some very quiet and some packed with tourists. Just a turn off a busy city street of skyscrapers and you were in the incense imbued atmosphere of spiritual, traditional architecture with a sense of history, peace and calm amongst the ultra modern city.

Tokyo is one of the safest cities in the world. It is packed but orderly and certainly not full of police cars and sirens. People were so polite and friendly. Whilst travelling on the subway I would be asked whether I was having a good time, being treated well and whether people were speaking English with me.

Akihabara was a world of Maid Cafés, shops selling anime figurines, electronics, computer games and lots of single males. At one point in the early evening X went to a shop that sold retro computer games. It was up flights of stairs so I sat in my wheelchair on the side street and watched the world go by.

As time went on young women dressed up in anime costumes began handing out flyers for a Maid Café. Short frilly skirts, high heels and platform shoes, stockings, lace and gingham. Due to my position and inability to move my wheelchair alone I ended up as part of this parade, although thankfully ignored. It was wonderful people watching.

I travelled to Kyoto which was traditional and beautiful. The Golden Pavilion was stunning in its opulent exterior. Peaceful Zen gardens with stones placed to have meaning that was beyond my understanding.

I had another tour guide for the day – Okada-san. Short and jolly with a cheeky, friendly smile and full of information. He took me all over the city using taxis and buses getting me in the wheelchair to places that weren’t easy to reach. Kyoto was less accessible than Tokyo and I don’t think I saw all that there was to see but the cherry blossom was everywhere.

I visited Nijo jo Castle with its ‘nightingale’ floor; the floorboards designed to squeak to alert the guards to intruders. There were no statues or portraits of lords and emperors, just the most exquisite designs hand-painted onto walls and screens. The designs were inspired by nature – koi carp, cranes, irises, lotus flowers and cherry blossom. I was in heaven.

The manga museum was fabulous. Row upon row of manga comic of every style from children’s to pornographic. It was full of chairs and beanbags with people of all ages sitting around reading and enjoying their beloved literature.

I watched the Miyako Odori, an annual spring show performed by the maiko and geisha of the Gion district. Before the show I was served mochi and matcha tea. The mochi was served on beautiful little hand-painted plates which were then wrapped up for you to take away and keep and I still love eating off them now.

I visited Nara with its giant golden Buddha and the bamboo groves of Arashiyama. It was time to leave Kyoto and head into the mountains for the old town of Takayama. I went from 20°c to -1°c and snow by train that travels the most picturesque route of forests and fast flowing rivers.

Takayama was charming with its old world narrow streets and wooden buildings. It was also souvenir shopping heaven. I left Japan with many items that I shall treasure for life.

It was wonderful seeing more of Japan but I missed the buzz and thrill of Tokyo. Despite nearly missing the Shinkansen I travelled back with a few more days of holiday to enjoy.

I felt so at home when I got back. I loved the different little tunes that play at every subway stop. I loved the toilets with heated seats and various wash settings, some of which in the more upmarket department stores had volume settings for the music to play in your cubicle. I loved the lace interiors of the taxis and how respectful and simple the nod of your head is.

Sadly the more traditional restaurants were inaccessible and had floor seating which I couldn’t manage so I ate most meals on the top floor of department stores. There was a wide range of cuisines – French and Italian being as popular as Indian and Chinese are here.

There were plenty of Japanese restaurants as well though. Only once did the store close before the restaurant and along with it the lifts. I’m pretty sure it’s the first time the staff had to carry someone in a wheelchair down the flights of stairs to street level!

The cherry blossom was now falling and carpeted the ground. This cycle of nature and life is as significant as the blossoming.

The second to last evening I went to the Lost in Translation bar for a very expensive drink with the most amazing view that transformed as the sun went down and the city lit up.

I wound my way around the narrow maze of the Golden Gai, home of tiny one room bars with two or three stools frequented by the Yakuza and setting of Midnight Diner. The trip of a lifetime was nearly over. One last day spent quietly at Ueno Park and the Tokyo Museum before heading back to the hotel for that fateful final smiling selfie.

I found a part of myself in Tokyo. I felt at home amongst the Japanese people, the city, the culture and the modernity. I left my heart in Tokyo but part of it was spoiled and broken. On return my heart yearned for the city I had fallen in love with. I had unfinished business…

https://ninaisinhere.home.blog/2022/04/23/my-heart-is-at-home-in-tokyo-part-four/

My heart is at home in: Tokyo. Part two.

My heart is at home in: Tokyo. Part one.

The last night in Tokyo X had a DJ gig. Beforehand we had been out for an amusingly bizarre meal, taken a final selfie together and for me the trip was over on a high. The DJ bar was not accessible so I stayed at the hotel and he would be back by midnight, 1 at the latest. We still had a bit of packing to do and were being collected for the airport at 6am.

I got an early night but woke up at midnight, and 1am. 2am still no sign. 3am still no sign. 4am I made my way down to the 24 hour reception with the phone number for the bar which I had thankfully had the presence of mind to take before he went out. The receptionist managed to get through to the bar and X on the phone. I told him what time it was and that he really needed to get back, checking he was sober which he assured me he was. He had been sober for 2 months after a previous incident that led to me moving out to a hotel for a week.

He eventually came in the hotel room steaming drunk and furious with me for calling the bar. I held it together, I kept calm, I ignored the non-stop torrent of verbal abuse and we somehow managed to get packed and ready to go by 6am.

I held it together as we made our way through Narita airport; two suitcases, a rucksack, a DJ bag, me in a wheelchair and X barely able to walk straight. Once finally through security I cried and the verbal abuse started again until several hours into the flight when he eventually fell asleep. I continued to cry.

So that’s it, no fairytale ending, those were the final 12 hours of the trip of a lifetime. But now that is out of the way I can get back to the joy, wonder, beauty and excitement that is Tokyo.

I landed at Narita airport early morning and knew there would be several hours before being able to check into the hotel room so had made a plan. The Yamanote line is a loop rail route around Tokyo so perfect for seeing the city. I dropped off the luggage at the hotel and set off into the city.

I had naturally been concerned about how accessible Tokyo might be so had started by looking at the hotel on Street View. Amazingly there was a businessman in a powered chair outside the hotel and the Google car follows him down the street to the first crossroads. My concerns were pretty much instantly allayed. The rail and subway lines were also very accessible.

The rail line was perfect – I was able to sit, relax, ignore the jetlag and watch the city scenes go by. It slowly sunk in that I was here. I got off at Harajuku station. Turn left out of the station and you are into the trendy shopping area with every fashion style on show both in the shops and on the streets. Turn right and there is the Meiji Shrine. I turned right.

It was exactly as I had dreamt. Right there, in the middle of the city a beautiful, peaceful woodland walk through a giant wooden Torii gate, past rice barrels down to a traditional Shinto shrine. The architecture was everything I had imagined. There was a traditional Japanese wedding taking place in the grounds. I had my first Japanese meal.

It was then back on the train for the rest of the loop back to Shinjuku. I love the opening credits of Midnight Diner on Netflix as the city scenes are right where the hotel was and I am taken back there instantly.

After a few hours sleep I set out into the evening street life of Tokyo. It is a whole new world at night. Neon lights and signs everywhere, bustling with people and energy. Stores, bars, pachinko salons and restaurants all open for business and full of life. An advertising van drove past, one side a huge TV screen with the soft tones and music saved for adverts playing out over the crowds. I was in a scene from Blade Runner.

My first day was done. By the end of that day I knew my heart had found a new home. My dream had become a reality. The reality was better than I could ever have dreamt and I hadn’t even seen the cherry blossom yet…

https://ninaisinhere.home.blog/2022/04/15/my-heart-is-at-home-in-tokyo-part-three/

My heart is at home in: Tokyo. Part one.

As I start writing, it is April 10, 2022. Seven years ago today I was travelling home from my first trip to Japan.The previous 12 hours had been some of the worst of my life, preceded by probably the best two weeks of my life.

I’m not sure where my fascination with Japan began. I know I loved Pokémon cartoons (and still watch them several times a week on iPlayer at the age of 49!). I don’t think that can explain it though. I’m not sure I even equated them with Japan particularly. I think I’m going to have to stop worrying about how and why and just know that it has been there for a long time.

The fascination between the ancient and the modern, the architecture, the style and design, the spiritual and playful mentality. Temples, shrines, skyscrapers, bullet trains, kimonos, geisha, Pikachu, Hello Kitty, Spirited Away, netsuke, bonsai trees, Takeshi‘s Castle, Banzai. I find beauty, ingenuity or enjoyment in them that I don’t find elsewhere.

The trip took a lot of planning. At that time I could walk a little with two sticks but needed an accessible bathroom and would be in a wheelchair when out and about. I booked it with a travel company specialising in trips to Japan and they helped to find suitable hotel rooms and advised on the accessibility of destinations.

The trip would take me to Tokyo, Kyoto, Takayama and back to Tokyo over two weeks. I had a lot of fun in the run-up to the trip with the Lonely Planet guides to Japan, Tokyo and Kyoto, using Mario mushroom and flower post-it notes to mark the pages of interest.

I even had a playlist for the flight recommended by Cerys Matthews for the Weekend magazine in the Guardian, having written in looking for inspiration for the 11 hour journey. I listened to Dawn and Merry Christmas Mr Lawrence by Ryuchi Sakamoto as the plane landed into Narita airport.

I have used the first person singular so far, but I wasn’t travelling alone. I travelled with my now ex whom I shall refer to as X if I need to refer to him. He pushed me everywhere in the wheelchair (for which I am extremely grateful) but I don’t look back on it as a shared experience. As much as possible I shall write as if I were alone.

I had arrived in Tokyo and as the driver took me to the hotel he pointed to the cherry trees and said “Your timing is perfect – the cherry blossom has come out today”. And so the trip of a lifetime began…

https://ninaisinhere.home.blog/2022/04/11/my-heart-is-at-home-in-tokyo-part-two/

Love and Rage

Love and Rage is how Extinction Rebellion sign off some messages and meetings and I think it’s perfect.

But there is more to it than that and it goes beyond Extinction Rebellion in my life. Love, rage, grief, connection, education, action. One leads to another, leads to another and so on.

My journey with XR began with the grief and rage of what is happening to our planet and everything I love about it; humankind and the natural world.

The grief of how quickly it is being destroyed and has been, knowingly, for so long.

The rage at governments, banks, businesses, the media, individuals who put money and convenience above the crisis that is staring us all in the face.

I sought connection and found it in XR. “Grief needs a witness, it is a dialogue. You need empathetic company to work through the grief”. I have found a movement that shares my grief and rage as well as my love for our planet. They are prepared to take action, challenge and make demands of those in positions of power.

Extinction Rebellion offers a huge amount of education and I am learning all the time. However, the education increases the grief and rage which increase my desire for action.

Then come the connections and the love that follows from those. My involvement in XR coincided with lockdown, meaning everything moved online and on to Zoom. As a disabled person this was actually quite convenient. I join the weekly XR Brighton General Meeting and it is a place of great community, determination and support.

It’s invigorating being involved in conversations about actions that are being planned, whether I can take part or not. Anyone who comes to the meetings leaves feeling enthusiastic and supported. Our grief has been witnessed.

Taking part in the Kill The Bill protest march in Brighton April 2021 was an amazing experience of unity and community. A wide variety of groups and individuals getting together to noisily yet peacefully share our rage.

Every therapist I have had has asked me “what do you do with all your anger and frustration [about my personal situation]? I never have an answer because I don’t know what to do with it. But shouting at the top of your voice with a huge crowd of people at your frustration with the system is certainly a good outlet.

I met one of the XR members face to face at the protest. We had only connected virtually before and it was so exciting to meet each other.

The journey of grief, rage, connection, education, action, love. It becomes an intertwined circle.

I have been following the same journey with Gateway Women for the involuntarily childless. We grieve, we rage, we connect, we love, we educate, we take action.

I am educating myself and learning a new language from Jody Day with which to express and understand my grief.

“Pronatalism is ingrained in our society, where people with children are considered more important than those who don’t”. She talks of how politicians promote their family friendly policies rather than people friendly policies as one example.

Realising this has been an undercurrent to my life since my late 20s and continues through films, TV, literature, advertising and so much more brings rage and frustration as well as sadness.

Realising we are an invisible minority in society makes the connection between us even stronger and more and more brave women are leading action in the workplace through their HR departments and inclusion and diversity policies and practice.

I want to educate young people about fertility and continue to make steps towards making this happen.

Most involuntarily childless women start their journey as I did thinking they are alone. In fact one in five women in the UK are involuntarily childless and that is reflected across the developed world. An invisible, yet significant minority.

Disenfranchised grief, living loss, non-death bereavement are words I can use to describe my grief thanks to Jody. A grief which is not recognised or acknowledged by others.

In Gateway Women we witness each other’s grief, allow each other to rage and show each other love.

I rage about a lot of things. The news headlines, the fragmentation of the countries within the UK, Brexit, the Global North and its destructive effect on the Global South, the constant battle that I and many others face to access support and services, the terrible inequalities within our diverse communities, the terrible inequalities across the globe, the lack of forward thinking and global cooperation brought into stark highlight through the pandemic. ‘Greed and capitalism’ as BoJo put it so perfectly. It goes on and on and on and overwhelms me.

I have MS that started and has advanced significantly because of my grief of childlessness. I am permanently single because of how advanced my MS is. I am raging and grieving about that. I am shown a huge amount of love from family and friends because of it.

Perhaps ironically MS is one area in which I am least educated and connected. Maybe that will come next. I need to take action to connect with single, childless women with MS. I don’t really witness my grief within that community.

Love and Rage. Grief, connection, education, action. These are the things that are keeping me going.

All quotes (apologies they are not word for word) from Jody Day in her groundbreaking lecture in March 2021: The disenfranchised grief of involuntary childlessness.

Both Extinction Rebellion and Gateway Women are constantly evolving, listening, learning, changing and developing and my journey is part of a collective journey.

A couple of book recommendations and further thoughts:

The Wall by John Lanchester.

A story about how young people have been left to defend the country which has been destroyed by their parent’s generation. It rings so true as to the mess we have left the next generations.

Interestingly, Jody makes the point that as childless women we can have a wider outlook and be more altruistic in the way we view future generations than those who have their own children and I certainly feel this way about my involvement in XR and the development of fertility education.

An Absolutely Remarkable Thing and its sequel A Beautifully Foolish Endeavour by Hank Green.

I read these during the first lockdown and was struck by the way the books lead to global cooperation as the news in the real world was telling the complete opposite.

The books come under my favourite genre of near future dystopia/sci-fi/fantasy.

https://extinctionrebellion.uk/

https://gateway-women.com/

Words and Voices

I spent Christmas lying low and avoiding social media. I don’t do Christmas so just wait for the hubbub to pass

This year I surrounded myself with voices that have moved me greatly. Authors, activists, performers and a group of women.

Margaret Atwood spoke with wisdom, consideration and frank meaning behind every word on Radio 4’s Today programme. Her conversation with Greta Thunberg should be heard by every politician and world leader. Two women, young and old saying it like it is with such insight and intelligence but also just stating the obvious that is staring us all in the face.

Extinction Rebellion have put some of their Rebel Academy lessons into audio files, so I listened and learned.

I warily signed up for zoom conversations with Gateway Women for women childless not by choice (CNBC). https://gateway-women.com/

I’m A Childless Mother

Regular readers will know what a big part of my life GW has been, but a chat on Christmas Day, when being childless and single is the most difficult, seemed like a potentially bad idea. Why would I want to bring all this to the fore when I could just stare at the TV and numb myself?

The solo childless women chat was in the evening, and about 15 of us around the world talked, cried, raged and laughed together. I sobbed so hard at one point I can’t imagine anyone could really understand what I was saying, (for me it was the triple whammy of being single, childless and disabled) but woke up the next morning to messages from several of the women in the chat checking up on me and sending me love. We have all been sending each other messages of love and support over the past week.

I joined a more general CNBC zoom on Boxing Day and we talked about our connection in a club nobody there wants to be a part of. It is a deep connection.

We also had another solos chat on New Year’s Eve with more shared tears and laughter.

I have also joined a CNBC chanting circle. We meet every Sunday evening. Luckily we are all on mute but the words to the chants are about bravery, sisterhood, being a woman, being loving… It is therapeutic to chant with other CNBC women even though we can’t hear each other. I can hear my own voice and I let the words and sounds reverberate and heal my body and soul.

Jody Day, founder of GW can be heard on TED and YouTube. This week I listened to her on a podcast where she was given the amazing title of The Beyoncé of Childlessness. The Beyoncé of Childlessness

My access to books is through audiobooks as I can no longer pick up a book or device. I am therefore immersed in voices as books play a huge part of my life.

I use Audible and have just discovered BorrowBox, an app that allows you to borrow audio and e-books if you have a library card. I have just borrowed and started Why I’m No Longer Talking to White People About Race, written and read by Reni Eddo-Lodge.

Kae Tempest poet, spoken word artist, rapper, singer, author blew my mind the first time I heard them. I have listened to them a lot recently.

I had listened to the albums Everybody Down, Let Them Eat Chaos and The Book of Traps and Lessons when they first came out and many times since and have returned to them again this Christmas.

Watching them perform Let Them Eat Chaos Live on stage is the most mind blowing performance I have ever seen.

Kae commits their albums to memory and performs them without stopping. It is raw, emotional and breathtaking. They recorded their most recent album, The Book of Traps and Lessons in one take.

They recently put on two Facebook live conversations. One was with Flea of The Red Hot Chilli Peppers, who I was unaware I had turned author. The other was with Willy Vlautin whom I had not heard of before. I could have listened to these conversations for hours.

I had already listened to Kae reading The Bricks That Built The Houses. Over Christmas I listened to Willy Vlautin reading his book Don’t Skip Out On Me. Both brilliant.

The author reading their own work affects me deeply, and none more so than Kae Tempest reading their latest book On Connection. Written during lockdown, it is non-fiction and about the connection between artist, text or artwork in whatever form and audience as well as human connection and so much more.

When I finished listening to On Connection I listened to the track People’s Faces and sobbed…Kate Tempest. People’s Faces

A Year On Part Three: Life

A brief introduction before I start this. I always write my blog posts for myself and this one probably more than any other. I dictate rather than type, so speaking it all out loud is both therapeutic and cathartic. I cry as I speak and it does me a lot of good.

However, I am aware I’m putting this in a public sphere. It’s not particularly positive or uplifting, but there is no need for concern. I have good personal and professional love, help and support and I am not looking for sympathy.

You also obviously don’t have to read this if you don’t want to! I’m just going to be honest and get it out of my system a bit. Trigger warning about mental health issues.

In a way, this is really two years on, as on December 21st 2018 I was discharged from hospital into a nursing home and then moved into my own place November 2019. My life changed completely at the end of 2018 and is still unrecognisable and unfulfilled at the end of 2020.

The transition from working full time to hospitalisation to living in a nursing home to living back in a home of my own but not working and having full-time care is one I have still not overcome.

A few links to relevant blog posts if you want them:

Starting again.

The Mail on Sunday and beyond….

A Year On…Part One: Money.

A Year On… Part Two: Home

In Starting Again I write about everything I’ve lost in order to begin to accept it and start again. I knew it was going to be a struggle and it certainly is.

I have since gained a beautiful home and a very different lifestyle to the one I had in the nursing home but I’m still grieving for all I’ve lost. I continue to lose independence and more due to MS and life in general. I find life very difficult and cannot seem to come to terms with how it has ended up for me and how to face to future still to come.

Before we go any further though, I must make it clear how unbelievably lucky and grateful I am to have left the nursing home and had my colostomy and suprapubic catheter operations last year. I can’t even think about how things could have been were it this year.

My mental health is poor. Constant grieving goes alongside having a progressive illness. I share this cautiously but feel the need for more public openness if others do read this and thank others that have gone before me in being open about their mental health; I have self harmed and have suicidal thoughts. Note my comment above about receiving professional support.

My ability to access NHS mental health services has been dismal and I know I’m by no means alone. As always, it’s not the wonderful people working in the NHS, it’s the lack of funding.

In 2017 my MS nurse was happy to tell me they finally had a counsellor for patients so we filled out the referral form. She came back devastated to tell me that I was too depressed for the counsellor’s services. Luckily, I was in a position to be able to afford a private counsellor.

In September 2018 my neurologist was very concerned about my mental health and referred me to the Wellbeing Service, warning me of the long waiting list. I started taking Sertraline, which definitely helped and I took it for six months.

By November I was admitted to hospital. My mental and physical health had both fallen apart. I had a couple of meetings with a mental health nurse in the hospital but they were brief as he had such a huge workload.

Once in the nursing home in 2019 I finally heard from the Wellbeing Service and had a referral for an assessment. I chatted to the assessor for about an hour and a few weeks later heard back. They were sorry, but my needs were too complex to be met by their service.

Whilst in the nursing home my MS nurse came to visit and was once again happy to let me know that they now had a psychotherapist for whom you could not be too depressed to see. She put me on the waiting list, which she warned me was long.

I was lucky enough to still be in the position to be able to pay for private counselling sessions.

These stopped when I moved into my new home and I contacted my MS nurse to find out whether I was any closer to seeing the psychotherapist. She was once again devastated to have to tell me that they had lost that service.

Just as a darkly funny aside, in 2017 I rang The Samaritans for the first time. While I was talking I could hear an alarm going off in the background which I tried to ignore and the Samaritan I was talking to was obviously doing the same. It was seriously loud though. Eventually, I asked him whether everything was OK his end and he apologised profusely but told me he was going to have to end the call and that was the end of that. The Samaritans hung up on me! He did a good job though because I was laughing about it afterwards.

I have rung them a few times since and they really are brilliant. One of the most wonderful and important people in the world in my life is a Samaritan and I know if anyone were to get her at the end of the line they would be in the most safe and caring hands. If you need them, call them. https://www.samaritans.org

I started looking for a psychotherapist but they were neither wheelchair accessible nor affordable (£175 an hour?!).

Then, a lockdown benefit; a friend was in a local mutual support WhatsApp group and a psychotherapist was offering a free consultation for frontline workers and vulnerable people. She put me in touch and I have been seeing her weekly ever since.

She is affordable and local. We started on FaceTime but she is classed as a key worker so is able to come and see me at home despite tier restrictions. She is my absolute lifeline and this time I’m in it for the long haul. It’s hard, traumatic work and the sessions are exhausting but lighten the load a little bit at a time.

My physical health restricts my life greatly. I am stuck in a body I absolutely hate. I have carers 12 hours a day. Two in the morning for 2 hours to get me up, two in the evening for an hour to put me to bed and one with me all day.

I have developed a strange daily routine and get everything done in the morning and spend the afternoon alone in the flat in a reclining chair. I get up at 9.30, eat breakfast at 11.30, a main meal at 2.00 and go to bed at 8.30.

I can’t move my legs or feet and my hands and arms barely function. I am not able to do any personal care or dress myself. Last year I could brush my hair and a couple of months ago I could brush my teeth but can’t any longer.

My stoma and catheter have to be dealt with throughout the day.

I sleep in a hospital style bed. I am hoisted with a ceiling hoist in and out of bed, a shower chair, my powered chair or my reclining chair.

I can just about eat meals myself but have to wear a bib and I won’t even allow my carers in the room while I eat as I find it so embarrassing. They often have to assist me to finish a meal. I drink hot and cold drinks through a straw.

I can still use my phone, the TV remote and the position controls on my bed and reclining chair, although those actions are clumsy and complicated. I listen to music, audiobooks and podcasts and watch an obscene amount of TV. I can’t move around at all but at least I’m left alone for 4 or 5 hours a day with my carer on call.

Thankfully and joyfully I am able to get around independently in my powered chair. Lockdown has made me lose confidence in going out alone because I didn’t do enough of it and this is something I need to work on. I can’t physically get in and out of the flat on my own but once out I can have some freedom.

At the back of my mind though is the constant knowledge that I may well eventually lose these freedoms.

I do my best with self-care. I eat a healthy, mostly vegan and gluten-free diet. I have an exercise bike that pedals for me and I can exercise my arms on. I have reflexology and massage when I can and occasionally I remember to meditate.

I have wonderful friends in Brighton and beyond who make time for me around family and work and show me amazing support. They keep me in touch with the real world beyond carers and my strange everyday. We chat, we listen, we laugh and there are sometimes tears (usually mine).

Another lockdown benefit was that we reached out to each other more than we would have done normally. It also meant I got to hang out in the little garden with some of the residents in my block of flats. A mixed bunch of wheelchair users with a wide range of disabilities and big hearts.

My family are all over the country but we keep in touch all the time and we know we are always there for each other. I am completely blessed by them and they are my tether to the person I once was as well as to who I am now.

When mum came to stay January 2020 she asked me the question (a mother’s intuition.) ‘Are you lonely?’ I cracked. I am so glad she asked and I am so glad she was there to comfort me.

The answer is yes. Would I like a loving partner? Yes, of course. I miss male company, affection and intimacy, and I am having to come to terms with the fact that my past relationships were never really healthy or loving.

People make the point about how relationships are difficult, complicated, stressful and so on. Believe me, I know. But once the opportunity and possibility of at least having a shot at one disappears the yearning for it and grief over it are great.

I miss working so much. In some ways it is wonderful to be retired, have time, less stress and I am in absolute awe of my teacher friends as to how they have coped this year. But how I miss the company, comradeship, pupils, intellectual challenge and conversation. I am sure some of my mental health problems are due to not having any distractions from my own head.

I set out some aims in Starting Again. I have not made any progress in campaigning for more suitable housing for younger people with disabilities nor have I developed a part of the PSHE curriculum around childlessness not by choice. They are not forgotten though.

What I have done is get involved with Extinction Rebellion. 2020 and all it has brought, David Attenborough (although he is not fully supportive of XR), Greta Thunberg and Margaret Atwood all led me to XR.

I am making (at the moment zoom based) connections with people locally, nationally and internationally, educating myself, and trying to do something with like-minded people to battle the inaction and destructive actions of governments, global companies and institutions through non-violent direct action and civil resistance.

It helps with the feeling of powerlessness about the state of the planet and the powers that be and gives me the feeling that I can say to my nieces, nephews, godchildren, friends’ children, ex pupils and the next generation ‘I tried’. https://extinctionrebellion.uk/

I lost my connection to the childless women community but have recently rebuilt it and am fully engaged again. It feels good to be part of such a strong, brave, resilient sisterhood. https://gateway-women.com/

So, that is my life in stark reality. I am surrounded by amazing family and friends yet deep down in some ways I’m still unhappy and lonely.

I am well cared for but I don’t want to be disabled and I don’t want carers.

I have ended up living a life I didn’t choose or wish for and have little power to change.

The thought of the years ahead of me while my condition progresses is exhausting.

I often feel that I am losing the Nina who is trapped inside this body but I’m trying my best to hold on to her with the help of others.

Do I feel better for having written this and got it out of my system a bit? Yes. That is how it is, warts and all. I’ve been honest, said it out loud and it’s out there now.

2020 has for obvious reasons been a dreadful year for me, my loved ones, my outer circle, the UK, the world. I am not alone in my suffering and many are suffering far more greatly than me. How we all keep going amazes me, but we do. There are always some ups and some highlights that keep us going.

The world is falling apart climatically, ecologically and politically. People are coming together in wonderful ways but are more divided than ever in others.

I have made some steps towards change for next year so I wonder where I will be a year from now and I wonder what state the world will be in a year from now. The world keeps turning and life goes on…

A Year On… Part Two: Home

On November 1st 2018 I was admitted to hospital and would never return to my flat. On November 1st 2019 I moved in to a home of my own again.

I was medically fit to leave hospital after three weeks but stayed for two months while a social worker looked for suitable housing for me.

I was moved to a nursing home where I remained for 10 months, stuck until my flat sold and a suitable home was found for me.

My housing officer did his best to help but was very limited in what he could do while I still owned my flat He was looking into share to buy schemes but there weren’t any adapted flats and I was still stuck until I had sold.

I hit that headlines The Mail on Sunday and beyond…. and lots of kind strangers got in touch with me. One guy told me of a place in central Brighton; a block of 10 flats adapted for people in wheelchairs. His cousin lives there and he was aware of there being an empty flat.

I told my housing officer straight away but received very little response from him. Finally, my flat sold. My disdain for estate agents is considerable and I hope I never have to deal with them again. However, it was done and the money was irrelevant anyway. A Year On…Part One: Money.

This was late August/early September. My housing officer continued to struggle to find anything for me. There is simply very little adapted housing available.

Then, late September my social worker got in touch and told me about a flat in central Brighton that was available. The same one that kindly stranger had told me about months earlier.

It turns out my social worker wasn’t even aware that I had been told about the flat. When she heard about it she felt I was an ideal candidate. All the media coverage had raised my profile within Adult Social Care in Brighton and I definitely think that helped.

I went to visit it and was overwhelmed. A large, top (second) floor flat in the middle of Brighton. The whole building and the flat were wheelchair friendly. The bathroom alone was the same size as my room in the nursing home. When I looked down the road from the bedroom window, as there were no leaves on the trees, I could see the sea.

It was then I realised how institutionalised I had become and was actually fearful of living alone. I would have to arrange a care package but had got used to having 24 hour care available in hospital and the nursing home. It made it very difficult for me to judge whether the flat was going to be suitable for me.

It is a social housing flat owned by the Guinness Partnership and the woman showing me around told me they would need a decision in a day or so. It gave me no time to think or worry so I said yes and thank goodness I did. I had the keys to my own home!

I was told I was able to do whatever I wanted to the flat decor wise so, as I had to give a month’s notice to the nursing home, I took the opportunity to have the wood effect vinyl flooring replaced with carpet.

My friends gathered my belongings that they had been storing for me in their homes and the few bits I had at the nursing home and on November 1st 2019 I said my sad yet happy goodbyes to the wonderful staff and arrived in my new home

I had arranged a care package, so two carers were waiting for me in the flat. The occupational therapist had organised a manual hoist and hospital style bed for me.

I don’t remember much about that first day, but for a while I had been feeling nervous about being left alone for the night for the first time in over a year . However, when the front door shut and it was just me and my flat I felt nothing but pure joy. I still get that feeling whenever my carers leave in the evening. It is my favourite part of the day.

The next few days and weeks were spent ordering furniture (I had to spend my money before the council got their hands on it!) and my carers and friends put together chairs, tables, a wardrobe, cabinets, a sofa, hung lampshades and pictures – with their help my flat became my home.

It was wonderful starting from scratch and knowing I was the only person living in the flat so I could buy whatever I wanted for it. Previously, when moving, I had always had my partner’s taste to consider. I knew what I wanted and I bought it. It was also lovely to be able to unpack the few belongings I still had from my previous life. I had a beautiful home of my own.

The difficult part was getting used to my new care package and it is still an ongoing process. The OT had arranged a reclining chair for me, but because I have to be hoisted from bed to powered chair to reclining chair and so on I needed two carers. So, although I had my new flat there were always two carers in it with me. There is plenty of space but I was always conscious of their presence.

My OT was doing everything she could to get a ceiling hoist fitted, which only requires one carer. It was a complicated process because of the ceilings in my flat and took some time to organise but we got there in the end and just having one carer with me makes a difference.

The cousin of the man that got in touch with me in the first place about the building introduced himself very quickly and he is such a nice guy. He arranged for me to go around and meet all the other residents. We range in age with a wide variety of disabilities and it is such a friendly place to live.

Lockdown meant I got to know four of the residents much better as we would hang out in the small garden when the sun was out (all two metres apart of course). It also meant I got in the habit of sending my carer home for the afternoon as there was nowhere to go and nothing to do so I had much more time to myself.

I have spent 2020 feeling so lucky not only to have such a beautiful flat but also thinking how it would have been were I still in the nursing home. I can’t imagine how difficult things must be for them and I am so grateful that I am no longer there.

Friends would meet me for walks along the seafront during lockdown and on one such walk a friend showed me the wallpaper she was putting up in her bedroom. I loved it and it sparked the start of the redecoration of my flat. I had permission to copy her good taste, took a deep breath about the flamingos (Flamingos), was recommended a decorator by one of my carers and the transformation began.

I hadn’t considered wallpaper before and was now obsessed with it. The website selling the wallpaper is called World of Wallpaper and that is now what I call my flat.

It is truly mine and I absolutely love it. Every room makes me happy and I feel so lucky to have such a beautiful home 10 minutes away from the sea, the town centre and parks.

It was a long and distressing journey to get here but it’s most definitely worth the wait. However, I have not forgotten that the journey should have been neither long nor distressing and that other people are going through the process I had to go through to get here.

I want to campaign about it with the powers that be but I’m still fighting my own battles. I dream of being left alone and wandering from room to room around my flat even if it were for just one day. A Year On: Part Three will be about my life so far since I’ve moved here. That’s going to be a harder one to write, but I’ll get there. In the meantime I have some beautiful wallpaper to look at.

Flamingos

One day I fell in love with a flamingo. Not a live flamingo. Not any old flamingo. A Fabergé flamingo.

In the jewellery section at the V&A museum there is a cylindrical display case with a spiral of Fabergé animals. Right at the top is a flamingo, or my flamingo as I now consider it. I’m very grateful to the V&A for looking after it for me though.

I saw it and was entranced. About 3 inches high, gold legs, a mother of pearl body, a diamond studded neck, ruby eyes; just beauty and perfection. I visit it every time I go to the museum, although sadly now that I’m in a wheelchair I can’t really see it properly anymore.

For that reason a friend took a photo of it for me when we were there a couple of years ago, although it doesn’t really do it justice. It was taken in a hurry as you’re not supposed to take photos of the jewellery.

But it doesn’t matter, the magic had happened years before, the flamingo had entered my soul and little did I know where it would lead!

That was back in 2010 and flamingo designs weren’t really a thing back then. However, I found a cushion in Habitat with flamingos all over it and that was item number one.

But then flamingos as a design trend did become a thing and some friends found out I liked flamingos having told them about the one I fell in love with. My Fabergé one.

It suddenly became very easy to buy presents and cards for me. I received a couple of flamingo themed cards and gifts one birthday, which I happily placed in the flat. Friends and family visiting the flat would notice there were quite a few flamingos.

And so it began to snowball. I was given a lot of items that were flamingo themed. I loved them all but the flat wasn’t quite big enough to accommodate so many flamingos! However, they all brought joy.

They included a flamingo watering can, a string of flamingo fairy lights in the lounge along with three flamingo cushions, a flamingo tea towel and fridge magnets in the kitchen, flamingo glasses to drink out of and flamingo glasses to wear, a flamingo make up bag, plenty of things I’m afraid I may have forgotten and lots of flamingo birthday cards every year.

When my ex left me my wonderful nephews bought me a yodelling flamingo. Yep, press button on its wing and its neck rotates and it yodels! It was exactly what I needed to cheer me up.

I had just started a new job in a pupil referral unit, so it took pride of place on my new desk and brought a smile to pupils and teachers alike.

Then three years later I was admitted to hospital and never returned to my job or flat. I had to get rid of all my belongings and only two flamingo cushions and four flamingo drinking glasses survived. I decided it was time to let the flamingo theme go.

When, eventually it came time for me to retire on grounds of ill health I packed up my desk and my friend helping me took the yodelling flamingo for his daughter, spreading the flamingo joy.

Even then a colleague from work who came to visit me in hospital gave me the gift of a book titled ‘How To Be Flamingo’ because she’d seen the one on my desk.

My nursing home room was flamingo free…until Christmas. On Christmas Day afternoon there was a knock on my door and it slowly opened to a familiar sound. The yodelling flamingo! My friend and his daughter had arrived with a Christmas gift for me and so I was reunited with the toy of joy.

Another friend visited on Boxing Day with food and drink for a celebration and with her came a pair of very stylish flamingo Santa earrings.

When I left the nursing home and moved into my new place the two flamingo cushions, drinking glasses and yodelling flamingo came with me. I wore the flamingo Santa earrings on Boxing Day again when my friend and family visited.

But I felt that flamingos had finally taken a back seat in my life. I made the decision that flamingos would not be a theme in my new home (although I must confess to having bought flamingo salt and pepper pots pretty soon after I moved in because the pink looked good on my dark grey table).

Funnily enough, I do like real flamingos but I’m not crazy about them. However, I was very happy to see the flamingo emoji finally appear, although I sadly seem to have little opportunity to use it 🦩 .

Last week it was my birthday. I didn’t receive any flamingo cards or gifts, but then…the following day one of my carers arrived with a card she had made online saying ‘Have a flamingotastic birthday Nina’.

She also gave me a nightshirt with two flamingos on the front saying ‘Let’s flamingle!’ I slept in it last night. She bought it because the colours match the wallpaper in my new bedroom. Oh Fabergé, so much to answer for…