I woke the first morning being home after my Cauda Equina Syndrome. For a second I had forgotten about it all before the searing pain was an all-too-real reminder of everything that had happened. I was frozen in a strange position. I was facing a fan that Mum had placed there the night before. I thought I was on my side but I couldn’t roll onto my back, I was stuck. I reached down to feel my legs and tried straining my neck to see what position I was in. My legs had remained flat against the bed and my top half had turned to the side, no wonder I was in so much pain! I remember my Mum coming in to see me as soon as she heard I was awake. She gave me more pain killers because it was clear with my moans and groans that I was in excruciating pain. I looked down at my alien legs that I couldn’t feel and tears rolled down my cheeks. I had that heavy feeling in the pit of my stomach as if someone had died.
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I wanted it to be a temporary thing like when an arm goes dead when you sleep on it. I tried rubbing my legs so hard, I had pins and needles in different places and it gave me hope that all this was all just fleeting. I hoped that this was just an anecdote I could share at dance class about how scary it was to nearly not have feeling and control over my legs… I’d probably choreograph some contemporary piece about it, I thought. That was how I coped with things you see, something bad happened I’d dance, something good happened and I’d dance. I lived and breathed dance. Of all the things I was most proud of in my life, my dance accolades always trumped everything else. Winning the Division 3 World Championship was a memory I treasured like it was made of gold. I don’t think I’ve ever worked so hard for something before.
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I remember my first ever dance competition, I was terrible, truly terrible. I didn’t get past the first round! I had no technique, my head was stuck in a funny position, my chin pointing up at the ceiling and I’m pretty sure I danced like a constipated bull, heavy footed and clenched! After being eliminated in the first round I just wanted to go home, I cried all the way home from Stoke to our old house, ( a good two or three hours). But that loss didn’t put me off, I didn’t give up and slowly but surely I began to do better and better. All it took was tireless practising and a lot of training from my amazing dance coach Rachael McEnaney and I eventually started to believe in myself and a few trophies started coming in.
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Dance moulded my self-worth. It gave me focus and room to become who I wanted to be. As a child, I lost my Father, Grandparents and Aunt, in the space of just a few years, all of whom I was very close with. Dance prevented me from spiralling in down a self-destructive path while I was grieving. I remember the day I won the British Championships at the Blackpool Tower Ballroom as if it were yesterday. It was the first time I’d had a sensation of being exactly where I was supposed to be. I saw my Mother clapping as I stood on that top stair with the freezing-cold trophy held tightly in my hand. I could see the emotion in her eyes. I saw friends, such dear friends, in front of me cheering and taking pictures. Those people had become a second family to me.
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I used that same internal drive in my rehabilitation period post-Cauda Equina Syndrome. Eventually, I was able to move my legs and manage on crutches a bit before they give way. They go from underneath me in a flash and don’t give me any warning. It heightened my anxiety never knowing when my legs would stop holding my weight. Unfortunately, they are giving way more frequently as the years go on, but I am more comfortable in my wheelchair now that I have come to terms with my condition. You see, when my mobility issues and my pain prevented me from dance, after the Cauda Equina Syndrome, I felt lost. I didn’t know who I was without my dancing shoes on. The world felt like a much sadder place without dancing. I missed our lifestyle, the friends, the music. Most of all I missed that sensation of headspace, of thinking about absolutely nothing except the music and the dance. Over these seven years, I’ve found it really hard to see people dance, I’ve felt jealous and actively avoided shows like Strictly Come Dancing on the television. I felt like I might break into a million pieces if I saw that infamous Tower Ballroom again.
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That was until recently. One random day a few weeks ago my Mum made me aware that her friend Pat had asked us to go to a dance event with her daughter and my good friend Stacey. I had recently ventured outside the house to go to the CESA office and events, so I was feeling more confident that I could cope with my mobility, bladder and bowel issues along with my pain outside of the house. Despite feeling nervous and embarrassed, I said I was up for it if Mum was. She smiled. I later found out that the event called the Legends was being held at the Tower Ballroom in Blackpool, it felt like the right time to return to that majestic place that I had fallen in love with all those years ago. Back to the mecca of dancers from all over the world. Our friend Jill helped organise everything with us, which I was particularly grateful for.
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The journey to Blackpool was hard on my back. I know that my capability to cope with journeys is a variable that depends on how much pain I’m in before I set off, how smooth the suspension is, car seat differences, the number of bumps in the road along the way and the amount of traffic. One day I could find it relatively easy to do a two-hour trip, the next day I could find going to the next village hard. Crazy!
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We arrived at the hotel and everything was fairly smooth for me, but I worried about my Mum bringing all the bags in. A man behind the reception desk had kindly said he would help us with our luggage but never did. We arrived in the lovely room with a view of the seafront and we both lay down on our twin beds. I found it quite difficult to transfer from my wheelchair to the bed, my Mum had to hold the back of my trousers in her hands and help pull me far enough onto the bed so that I wouldn’t fall off.
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We waited for the gentleman to ring us to help Mum with the bags but after an hour we had to start getting ready for the evening, I need a good hour for my makeup alone! So, Mum did it alone over four journeys there and back to the car. That’s eight trips in an elevator that was sporadic in its decision to work or not. Did I tell you my Mum is 73, with arthritis, she’s an absolute stalwart. I sat on the bed feeling helpless, wishing I could assist her, but instead I took some medication and hoped the pain would end.
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I started doing my makeup but it soon caked up and broke apart because I was so hot and red due to my back pain. I was becoming increasingly more conscious that everyone else was texting they had arrived at the venue and I was just starting my makeup again in a hotel 10 minutes away from the venue. I have come up with a pretty good makeup routine for when my face is doing an impression of a beetroot in a sauna (if yours ever does the same – call me!)
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I changed into my outfit with the help of my Mum I initially tried my Spanx on, but that was a farce in itself! Plus, Spanx and my suprapubic catheter didn’t seem to work well together… it took a good five minutes for us to peel me out of those. As you can probably imagine my mood wasn’t particularly great at that moment. Normally if I was at home and in this level of pain I would lay on the floor, get a hot water bottle and wait for my medications to kick in. I didn’t have that luxury today and I wasn’t going to let everyone down.
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We eventually set off Mum looking lovely in her dress and me feeling fancy in my high heels in my wheelchair. I used to love high heels so it was a real treat to wear them again. We got to the car and I transferred in with even less precision than before. As my legs become increasingly heavy, my ability to transfer becomes harder. But I did it or should I say we did it. We drove to a car park and then Mum pushed me to the entrance of the Blackpool Tower. I stopped my wheels. I don’t know if I’m going to do well portraying how I felt in that moment. I think the closest emotion is fear, I looked up at the erect copper/bronze tower above me and I suddenly felt so small. I smelt the salt from the sea air, I listened to the seagulls and I contemplated just sitting on the front with my Mother. That would be enough for me. What will everyone think seeing me in a chair? I was very aware that my appearance has changed too, I’m older and a few stones more than I was when I was last dancing. But I thought of the faces I’ve been dying to see and I stopped holding my wheels back and we went in.
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My first indication that I was at a Line dance event was hearing my old teacher’s voice over the microphone with his well-rehearsed way of ending a dance and introducing the next one. That familiar sound that I had forgotten about immediately took me back to nights spent dancing at his class in Harrogate. Due to the fact I was in a wheelchair, I was being taken a different way to everyone else to get to the ballroom that was accessible for me. Eventually, we came across two double doors with frosted glass panes with the word ballroom inscribed across them. My heart raced. The assistant opened the door, we were met with a vision of pink faces due to the super cool lighting set up. The room was warm and I looked straight up to the ceiling. That majestic ceiling! It still takes my breath away. There is something so iconic about that room, I tried to soak it all in. I thought of all those famous dancers I’ve long admired who have danced in this very spot.
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We continued rolling up the side of the room occasionally saying hello to people we knew until we came to the back of the room (by the bar, no surprise there) where our table with our friends had been situated. I saw beaming faces of my friends, I wanted to leap out of my chair and cuddle them! That was the exact moment that my fear melted away. I knew by that wonderful greeting that nothing had changed. I loved catching up with everyone, watching people dance and listening to old songs. It was incredible how many dances I still remembered considering my short term memory is abysmal, I was impressed with myself.
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My friends could see how much I longed to be on the dance floor and we came up with an idea- I could try to do a dance from inside my wheelchair. We took off to a corner of the room and practised a dance called Ribbon Of Highway. It’s an iconic beginner dance that most people learn when they start line dancing, but I didn’t care what it was. I was dancing, and to me it felt like I was in the corps de ballet of Swan Lake! My friends requested the song and we went onto the dance floor, my friends & Mum surrounded me on all sides as we danced on that most famous dance floor. Hayley my lovely friend worked super hard to show my Mum the dance so she could do it too. Plus at one point she skipped around me to give me the chance to rest my arms. Such a good friend! After the dance, I put my arms in the air in delight and for the second time in my life, I felt exactly where I am supposed to be in the Tower Ballroom.
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Me dancing!
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My Mum, Sharon our good friend with our recently passed friend’s face on her sash – the incomparable Lizzie Clarke, myself and Stacey!
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A highlight of the night was seeing a lovely friend Craig that I used to partner dance with. When he saw me he ran over and jumped on my knee, I don’t think I’ve laughed that hard in ages! I did worry my catheter bag would burst but luckily for us both it didn’t. I can’t tell you how much I appreciated the kindness of those people that night, it was the best. They all made sure I got to have a photograph with everyone to take home. We were missing a few from in the room & few who couldn’t make the event, but in the main everyone was in the photo and it’s going to be my Facebook profile picture… indefinitely.
Stacey, Michelle, Stuart, Julie, Donna, Sandra, Sharon, Richard, Lynne, Mum, Pat, Jill, Craig, Me, Rob, Hayley & Chloe! ❤️
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After the dance, my back pain became too much, I went into urine retention so I decided to leave. It was a hard decision to make because sitting with the people on our table i’d missed so much and having my good friends Michelle & Stuart and Shell’s Mum next to us was like a dream come true. But I had to go. Mum took us back to the hotel and got herself a glass of wine and a sandwich for us to share. I didn’t really sleep that night I was in so much pain. A kind lady on reception brought drinks and more pillows to try make me more comfortable which I appreciated a lot. I saw my friend Stacey and her ridiculously cute son Harrison the next morning which is always such a joy and then Mum & I went on to visit my Aunty and Uncle at the bowling green in St Anne’s after. I learnt the rules of bowls which was really quite interesting. Perfect end to our trip!
I love my Aunty Marion & Uncle Bob so much!
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All in all, it was a magical, surreal, high pressure, joyful couple of days. It was incredibly painful, but more than worth it!
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I hope you enjoyed my blog about dancing again and I hope it encourages you to break out of your comfort zone once in a while too. I found it life-changing!
Until the next time,
Catrina