I’d first like to say a massive thank you to Dani and Pippa for being strong and courageous enough to go on holiday with me!
I’d first like to say a massive thank you to Dani and Pippa for being strong and courageous enough to go on holiday with me! Especially to cobble central! I’m so blessed to have great friends like you guys and there’s no one else I’d rather have gone with. I know I’m not the easiest patient and I’m a lot of hard work, so I suppose thank you so much for putting up with me haha. I’m sure my Mum and Dad thank you too for bring me home safe and in one piece, although my Mum will probably make a joke along the lines of that you should’ve left me there, but she loves me really… I think. The whole trip wouldn’t have been possible without the Parkington’s donating the money, which they raised in memory of there daughter. Thank you guys so much!
On Friday 22nd May I headed to Italy with my two friends, Danielle and Pippa. We booked the apartments with a travel company, as it’s hard to find apartments and hotels which suit my needs, including: a walk-in shower and no steps, as I would be spending the majority of my trip in my wheelchair because walking tires me out and slows down the day.
We made it to the apartment and the first thing we saw was eight steep marble narrow steps, followed by a further step into the apartment, definitely not ideal at all or what we’s asked for, especially after a long day of sightseeing! The majority of my falls happen when I’m tired, so as you can imagine I was a little bit scared that the stairs would cause a problem. Once the landlady of the apartment showed us all of the rooms, we also noticed that the shower in the bathroom had a 30cm step. Considering, even when I’m holding on to someone, steps are difficult, to manage to get up a 30cm step on my own just to get in the shower would be unsafe and dangerous. After a talk with the girls once the landlady had left, we decided to ask Danielle’s mum to contact the travel agent to get us moved due to the apartment being unsuitable and unsafe. I decided to go straight to bed and not tell my parents until the following afternoon once different arrangements had been made to stop them from worrying.
The next morning we waited around a bit to see what was happening with our accommodation, but decided in the end to just go out and make the most out of our holiday. We got on a bus and accidentally missed our stop, ending up in a train station in a rough part on the outskirts of Rome. Eventually we managed to find the Colosseum. After having a look around the bottom level of the Colosseum, I convinced the girls it would be much better to have an audio guide because I love a good tour. It was very good. The Colosseum is much bigger than it looks in pictures. Whilst there we got a call from the travel company to say they’d managed to find a suitable room in a hotel right in the centre of Rome, near the Trevi fountain! This was ideal as my bucket list included to ‘Throw a coin into the Trevi fountain’. So we moved to the Trevi Collection Hotel, and once we had moved in we headed out for dinner. I had the best Ravioli that night, yummy!
Upon leaving dinner we asked the waiter for directions to Trevi fountain. He replied that it was currently closed for restorations. My faced dropped and I could feel Danielle’s and Pippas eyes on me, I tried so hard no to cry as he explained that it had to be cleaned due to pollution and that there was scaffolding all around it. He ended that he hadn’t been in a few weeks so it might be open now. So off we went to find it in the hope it would be open. Due to the fact that it’s one of the world’s most famous fountains, I hadn’t even bothered to research if it would be open…I mean who would even think to check something like that? As we drew near to the fountain we could just about see it through barricades. My heart was pounding, hoping it was finished, but a few steps later I couldn’t see any water and there was scaffolding in front of the fountain. I burst out crying – like the ‘Marley and Me’ film style crying, for those who have dogs and have seen ‘Marley and Me’ you’ll understand and for you cat lovers I’ll try and explain. Rome has always been on my travel list, purely because of the Trevi Fountain and the Vatican, so to book everything and be there, knowing finally that I’d be setting my eyes on the Trevi Fountain to then find out moments before going to see it that it’s not working is heartbreaking! Knowing that your standing/sitting in the right spot where millions of tourist stand every year, but your anticipated view and atmosphere is destroyed by scaffolding. It’s so disappointing!
The next day we had a bus tour around Rome, stopping at all the tourist destinations – my favourite being ‘Santa Maria Maggiore’, which is the largest Catholic Church in Rome. The decor was just amazing, the ceiling was incredible with flowers and a house of arms shield covered with gold foil, it was breathtaking. We finished up at the Trevi Fountain as during the day you can walk along a walk way over the fountain. On our last day in Rome we spent the majority of the day in the Vatican, having a private tour which I had booked for both the girls for their 21st birthdays. The Vatican was just incredible, each hallway representing a different collection from history. My favourite being paintings of Italy marked with every town, mountain and river in the 1580’s. The scale and positionings were accurate, even though the only way to record and gather the information was by foot/horse and paper. Definitely a must see! The rest of the tour was incredible too, especially ‘The Sistine Chapel’ and ‘Saint Peter’s Basilica’.
During our time in Italy we came across quite a few situations that really annoyed us. A good example of this was when we got caught in torrential rain coming out of the Colosseum and decided to duck into the Metro to get cover like many others. A lot more people followed suit and the Metro was soon packed and we decided it was time to leave before it got any worse. On our way out an elderly man decided to walk out in front of us and his ankle was hit by the wheelchair, as we were stopping. His reaction was appalling; he shook his leg like I was a little dog that had just peed on him and followed it with a dirty look. Continuing to try and leave, another man decided to shake his soaked umbrella over me. There was a specific ramp for wheeled access which people continued to walk up, while I was quite clearly trying to get down. There is only so many times you can say excuse me until it becomes necessary to just say “Move!”, and even then I was still ignored by people. Throughout the week it annoyed us and irritated us to see people using ramps for entering and exiting places even though they had 5 more entrances than me. It seemed to us that many people thought we should move out the way and work around them, even though it’s much easier for them to move into spaces than for us to have to completely move off the pavement and onto the road. Another thing that irritated us was the amount of stares we received from people for just being in a chair. I understand that when you see me in a wheelchair there is no obvious problem other than my splint. One specific example of this happening was when we were in the Vatican and one girl kept constantly staring at me every time I saw her. Even when I smiled at her she still wouldn’t stop. During the end of the tour my ability to deal with the continuous stares, was extremely low. I completely understand that people are staring because they are curious, I’m sure in the past I have looked at someone in a wheelchair and have wondered what is wrong with them, but I would have just had a glimpse and then given them their privacy. When you’re in a wheelchair, people feel the need to stare for long periods of time and seem to think that you won’t notice.
At the start of a day, my tolerance is high and if someone stares at me I smile so they don’t feel awkward, they know I am happy in my chair and I am not ashamed. However, after a few hours in crowds, I just don’t have the patience, politeness or energy to smile at people anymore. I’m so frustrated at people constantly staring. Some stares are just until I catch them, while other people will continue even after I have caught their eye. Finally, you have the most annoying ones, where people stare at you and keep staring as they walk by even looking back after they have passed. I feel like I am blessed to have such an outgoing personality and to be confident within myself, as I feel that if I was shy and timid, this would completely put me off going out and exploring, because you feel like there is something wrong with you and it’s demoralising. It’s frustrating as I feel like I haven’t done anything wrong to have to deal with these situations. They do have a negative effect on my life and how I feel about my condition.
After leaving Rome, we headed onto Venice. Arriving in Venice in what we thought was the correct area, we soon discovered that GPS doesn’t work in Venice and only a maps app on my mobile will take you to the right place. After a group of six elderly men pointed us in the right direction, we eventually ended up at our apartment. The landlady repeatedly gave me a pity look and mentioned that she didn’t know how I was going to get around in my chair, nevertheless, we got settled in, went out for dinner then we headed to bed as I was extremely tired.
The next morning we headed to Marco Square and spent the day exploring the museums around about and doing a bit of shopping. On the final day we headed to Murano, which is famous for glass blowing. We headed straight for Abate Zanetti-The School of Glass, and saw a tour advertised at 4pm. We decided to go in and book our place on it. However, the guy at the desk informed us that I wouldn’t be able to do the tour as I was in a wheelchair, but he asked us to give him a minute while he checked something. The next thing we knew, he was ushering us through to where they were glass blowing and told us we could watch! I was so happy, I had always wanted to see it being done and now, not only was I watching it, I had VIP seats right infront of the work bench. It was incredible, they told us they were making a Medusa. We had no idea what that was, so a guy ran through to get their collection and showed us a huge slab of glass with a jellyfish inside! We kept talking even though there was a language barrier. He then pointed at me and said ‘I make you a horse’. Before I knew it, a blob of glass was crafted into a horse. We were then taking it in turns on the other side of the bench at blowing into a ball of melted glass, it expanded with each breath. It’s so much easier than blowing up balloons. After all of us had a go they handed us all a vase and also gave me the horse he made. We all just looked at each other in amazement, speechless we had no idea what to say but thank you (those who know me well, will be laughing because I’m never speechless). His colleagues took the items off us to wrap them up for us. Talking to him, we discovered that he’d been blowing glass since he was a child and the lady in recepiton, who’d translated when needed, was his daughter! We waited until his colleagues were back and we got a group photo. The picture was taken and I turn to Pippa and said ‘I want to give him my band.’ (I now have Lucy’s Fight bands). She agreed without hesitation. He was the first person I told about my illness on holiday. I took off my band and explained that I was the Lucy on the bands which I had designed myself to raise awareness about MND…not that my designing skills are anything in comparison to his! He called his daughter over and she read it to him then translated. He then looks at his wrist and took off one of his metal chained bracelets and put it on my wrist, even though I told him he had done enough. At that moment I was fighting back tears, this guy was one of the most amazing people I’ve ever met. He didn’t have to do anything, yet in the space of an hour he gave me one of my most treasured memories! I can’t even begin to tell you what that day means to me, without knowing it he has given me fight and hope! I can’t explain the connection we had, it was as if I’d known him for years. After saying goodbye and we were outside the building, we all just looked at each other and asked what just happened, all of us admitting we nearly cried and agreeing he was a TOP GUY!
On the boat back to our apartment, we got chatting to a lovely couple from Bournemouth who were here for a wedding. We spent the boat trip just getting to know each other. There were no awkward silences and they didn’t pitty me or see the wheelchair. They just saw me, I even told them I had MND and they didn’t flinch or give me pitty, the conversation just moved on. Maybe this was because they didn’t know what it was, but it was a great relief to be seen as a person and not just the chair! At no point did they show any sign of being awkward around my chair. This day had been the best, and there wasn’t a single moment where I felt that I was ill. I can’t express what a day like that means. Those days are the reason I keep fighting, stay stubborn and hold on to hope!
Lucy x
Dani: Pity looks, judging looks, dirty looks, any kind of look you’ve ever received I can guarantee Lucy has also received it, but the difference is that she has probably received them all in one day. I’m not the most observant when it comes to noticing what people around me are doing and I often easily miss things, but even I noticed many people around us staring. People would refuse to move, they would notice the wheelchair, and continue to stare at Lucy while sometimes continuing to walk straight into her. It wasn’t something I even considered when going on holiday with Lucy, I didn’t think about it ever being something we would have to deal with. The best way to describe how I feel when it happens is that I get this deep urge to slap the person in the face, not hard and I would never actually do it, but it makes you so angry and confused at why they feel the need to do it, that it takes a lot of restraint to hold back. I felt the best way to get rid of the anger at the time would be just to tell them to stop, but it’s hard to find the words when you feel so angry. There were even a group of 3 girls the same age as us in Venice together, exactly as we were. Yet one girl felt the need to point out Lucy, yes actually point at her to her friends. I don’t know about you, but my parents always told me it was rude to point. Although there were a lot of incidents like this, there were also a lot of moments that restored our faith in people. If you’ve ever met me you know I’m very,very short so when it came to pushing the wheelchair or helping Lucy with walking I wasn’t able to be as helpful as I would have liked to be. This meant while Pippa helped Lucy down the stairs to the Ballistica, I carried the wheelchair down infront. Within about 10 seconds of picking it up a man came over and offered to take it down for me, this happened on every set of stairs, a different man offering every time. Any steps we would come across there would almost always be someone shouting do you need any help, whether it was helping me carry the chair or helping Pippa get Lucy in the chair down a step.
Pippa: When Lucy first asked me to go to Rome with her so that she could tick off the Trevi fountain from her bucket list, I was honoured. I wasn’t quite sure what to expect when we got to Italy, as I’ve never travelled with someone that has a wheelchair before. I thought travelling around might be a bit hard, but actually getting around Rome with Lucy in her chair was pretty easy, I thought I’d find it hard pushing Lucy but I didn’t. We had one hill to get up to our hotel and that was the only time I found it hard to push. However, trying to get around when there were crowds of people was extremely hard! I had no idea people would treat us the way they did, pretty much no-one would move if they saw us coming, they would expect us to get out if there way, which for us was a lot harder! When we were on pavements in Rome, people would just look at us and not really move, so after awhile I’d have to start pushing Lucy on the road by the pavement just to try and get anywhere. The looks some people would give us were horrible. The one occasion of this that sticks in my mind was when we went to the Vatican. We went on a Monday so it was very busy, as all the museums are shut on a Sunday. Having the tour for me was a highlight of the trip, Lucy got Dani and I a private tour around for our birthdays. Once we got inside it was so busy and trying to move from one room to another was difficult at times. There was this one girl that seemed to be in every room we were in, every time she saw us she would give us a dirty look and stare at Lucy’s chair. Once we saw the museums we went to see St Paul’s, there was about 50 steps to get down first. Lucy being Lucy was determined to get down them so we got her out of her chair and took our time getting down, on the last set of steps which was the steepest I saw this girl again. We were almost at the bottom when she just pushed her way past me. I dont think I’ve ever felt so angry before, she could see Lucy needed my help to get down the stairs, and even then she still pushed by. Once at the bottom she just turned around and stared again! I think this might be because she heard me saying something rude about her to Lucy!
It was upsetting seeing how people would look at Lucy’s chair, I really wasn’t expecting it. I wanted to shout at a lot of them to stop! Having said this we meet some lovely people. Once we got to Venice I felt the people were a lot nicer towards us, more people would move for us, or help when I couldn’t lift the chair up steps. The workers on the boat taxis were so helpful, every time we’d get on or off they’d help me to lift the chair. On the boat back from Murano (the glass making island which was another highlight of the trip), we met this lovely couple that had been in Venice for a family member’s wedding. They didn’t look at us as if we were any different, they just chatted away. They were telling us all about the wedding and that we should go to the bell tower of St Mark’s Basilica (which we manged to do on the last morning and it was breathtaking!). After chatting for a while, Lucy told them she had MND. This didn’t make any difference to them. This lovely couple put my faith back into humanity and that there really are nice people out there, and they won’t all be giving us dirty looks, pushing past us and staring. It was a awesome trip and we all had a brilliant time! We ate so much pasta and pizza that I’m sure we’ve put on about a stone each. I can’t wait to go back and see the Trevi fountain when it’s working! It was a trip of a life time and I’m touched that Lucy choose to do it with me!
