It’s been quite a busy week, but we spaced it out so that my body could keep up! On Saturday I went out on a night out into town with one of my best friends Rhianna. We went to a pub where the music was so loud we couldn’t hear each other talking. It was great, and definitely something I want to repeat. I know this sounds silly, but I loved it because it felt so teenagery (I know, not a word, but it is now) and right.
The thing that people don’t see are is all of the preparation that went in to that one incredible night, and how it made me poorly for two days after. Before going out I had to have an equivalent of four of five hours extra feed, so that I could go out on water. That wrecked me from the start. I then got up and dressed, did my meds, packed and went out. In quite a bit of pain if I am completely honest with you. I went out in my wheelchair, and it didn’t mean we had any less fun. Both the bouncers and the incredibly drunk were very nice, something I wasn’t expecting if I am completely honest. One slightly weird thing that came about was a row of very drunk people kissing and shaking my hand? Very odd. There was three of them. Congratulations on behalf of the drunk, we are proud of you for being out while sitting down on a chair that has wheels? Anyway, they meant well. You know you have a bloody good friend when she drags a chair next to you on the dancefloor and chairdances next to you. She made me feel so normal. Thanks again you wonderful person! Despite Rhi having a couple of drinks she didn’t crash the wheelchair once (although I nearly broke my toes against door frames a couple of times. Haha!). I was beyond exhausted and felt very poorly when I got in. I took off all my makeup and passed my NG tube into my stomach. I started draining a bit of blood. Swaying in my wheelchair to a bit of music caused me to have a small bleed. I think my body is actually allergic to the concept of being a teenager. It wasn’t anything major and mum helped me with the rest of my routine to get to bed. An hour of so later I was ready for bed. Reading this you may think I would never want to go out and do that again – but you know what, despite all of the pain I had an amazing night and would definitely do it again.
In other news, the Kendal Poetry Festival has now got full funding! I am so excited about this years festival and its inclusion of young poets. Being the Young Poet in Residence last year has given me confidence in my work and made me push myself forward for things that I probably wouldn’t have done before. I now really enjoy performing, and actively seek out the opportunity to watch others perform, largely due to this festival. I am beyond excited. Block off the 16th to the 18th of June 2017!
I have just finished a Young Adult fiction book called All the Bright things by Jennifer Niven. I haven’t read any YA books in ages, but picked this one up because so many people were raving about it. Oh my goodness, I can see why! I wouldn’t say this book is a YA book in a traditional sense, yes the protagonists are seventeen, but the subject is one that needs addressing so much more often in fiction generally and the story is so complex iI am sure it would sell on adult fiction shelves. The book focuses on Violet and Finch, Finch has obvious mental health difficulties from the start. The chapters alternate between Finch and Violet’s perspectives. It shows him as a 3D character – yes, people who are struggling with their mental health feel more than one emotion, they can love and care for others, their illness is not a selfish thing. Jennifer Niven was incredibly well researched when writing this book – and it seriously shows. It’s a devastating and eye opening read. The best book I’ve read in ages (I say that all the time, but seriously, I think this time I have found my favourite).
I had a really lovely chilled nineteenth birthday this week. I got up late, got dressed and went downstairs to open my presents. Come to think of it – I’m fairly sure that this is the first occasion I have come downstairs not wearing pyjamas for a celebration like my birthday. It must be adulthood slowly creeping in… I got some amazing presents. I couldn’t decide what I would like for my birthday, so mum and I went around all of the makeup counters in Debenhams choosing. I picked up a few lovely bits. I also got some striking glitter gold trainers, that I’m fairly certain you’ll notice I’m wearing. I got two lovely bits from Iridium in Kendal – a gorgeous Leuchtturm diary for my feed backpack and an amazing pencil sharpener shaped pencil holder.
The picture below was drawn by Lianna, who runs the Disabled Life blog on Tumblr which I think is amazing. She also a digital artist within her own right. I contacted her and asked if she would draw me some pictures for my mum as a present, and this is one of two that she did. Isn’t it amazing? You can check her out here on facebook or here on twitter.
I have just read possibly one of the best books of poetry I have ever come across. It is Penguin Modern Poets No. 3, containing Malika Booker, Sharon Olds and Warsan Shire. Wow all of those poets are incredible! I bought the book because I wanted to see some examples of Sharon Olds’ work from across her whole career. Warsan Shire who is the poet behind ‘Teaching my mother how to give birth’ had poems that were incredible. I spent the whole time loving every page and excited for the next one – a rarity. I read the whole thing in a day, and I have never used so may page flags. I only use page flags on poems that I love but this book looks like it has sprouted multi-coloured hair because I have chosen so many!
I have had many meetings this week about all sorts of issues. They were all positive though, which is a relief – because sometimes you have to build yourself up and expect knock backs. I have had three meetings in the last week and none were disappointing or upsetting. Hurrah!
I have also been published in The North poetry magazine this week as a part of a feature on out young writers group. I haven’t got my subscriber copy yet, but I am really pleased – this is my first poetry magazine publication!
Lianna also did this gem! It’s me reading at a poetry event and I love it so much.
This week I went to the Cumbria Cultural Awards, a hospice and recognised feeding tube awareness week.
I will start with the Cumbria Cultural awards. I went along to the awards with Kim Moore and Jenny Copley to represent the Kendal Poetry Festival for festival of the year, unfortunately we didn’t win, but we were up against some very stiff competition. In the end the comic arts festival won – and they are such worthy winners. The amount of events and prestigious artists they attract is incredible, and the atmosphere during the weekend is always amazing. I’m not going to say Kim and I weren’t a little disappointed, but all the festivals could have won for different reasons because they were so diverse.
At the weekend I went and looked around a hospice. Hospices are perceived as places that people go to die, however, this was a children’s and young people’s hospice. While they offer their services to people who are passing away, they also offer respite to families that have children with life limiting or life threatening conditions. I don’t know if I have a place yet, but oh my goodness it was an amazing place. There was minimal medicalisation – it was quite incredible how functional but hidden that side of things was. There were hospital beds in every room, but discreet call bells, bed sides and alterations in the bathroom. The rooms were huge, had lovely countryside views and looked really homely and comfortable. There was also a sensory room with a home cinema in it and a huge space dedicated to craft and having fun. They were talking about days out we could possibly do and things we could go and see. What an incredible place it was. Hospices, especially children’s and young peoples hospices, are not only places for the dying, they are very much for the living.
This week is also feeding tube awareness week. I didn’t know what a feeding tube was before I became unwell. It’s something that never crosses your mind because you can go to the tap and drink the water that flows from it. You can reach into your cupboard and eat the chocolate bar hidden at the back of it. You can meet up and go to the pub for the night. Things I didn’t think would change did change, and that could happen to anyone. I also kind of like the fact that it is feeding tube awareness week in the same week of my nineteenth birthday. On Sunday I can celebrate not only my birthday, but the tube that has seen me through (and I’m not being dramatic) and kept me alive to see this next milestone.
This week, I have been chatting to some of the girls who I went to school with. I suggested that we publish a song we worked on together. I wrote the lyrics to this song two years ago. These words won my first ever poetry competition. “Young Protest Songwriter” from Amnesty International. Last year Georgie and Sophie took on these lyrics and wrote a song to them. The result was a powerful song I would encourage you strongly to share and connect with, given the state of our world at the moment. The song talks about not being allowed to remain in, or go to a country. Listen, take it in and please share.
I am fairly certain these weeks are whipping around quicker and quicker. Maybe it’s just because they are very eventful and we never seem to be given a week off! I am sat in the car park of my hospital, waiting to see my cardiologist. I had a scan this morning and now we have a two and a half hour wait until my next appointment. Mum and dad are currently sat in the car munching M&S sandwiches, and I’m sat using my dongle to upload this from the car park!
I am exhausted, if I am honest, but quite content. We have had many meetings and appointments and now we are just waiting for some kind of let up. When I see people, I feel like I have no real news despite having had a hectic week. Illness is a strange little bubble to be caught up in.
A big life change decided upon in the last few weeks is that my mum has given up work to become my full time carer. My condition is making simple things difficult, and she is always there to sort me out. It has come as a relief to both of us, a burden has been lifted, because of this decision. My mum works hard for me, and she means that I can do things in precious spare time. She would say that any mother would do what she has done. I don’t agree. She goes above and beyond, gets up before me and goes to sleep after me. She’s a wonderful woman.
Secondly, due to increasing appointments about everything under the sun, I have given up my Sociology A level. We have worked out that by the time I am getting my second attempt operation, exams will be six weeks away. With nine hours of sociology exam including my extra time it was all too much. Especially with my memory problems and sleep deprivation. It feels another like another weight has been lifted – although I am quite devastated in my heart of hearts, as it is such an amazing subject. I made the decision because I would rather get one solid A level than two substandard ones that I can’t really use in the future.
I met up with a friend who I used to go to school with at the weekend. We went in to Lancaster and did a little shopping. She very naughtily (and kindly) bought me a gorgeous handbag which is very ‘me’ on every level. We talked about our lives and it was weird for me. I am still in the cocoon of high school, a place I have belonged for eight years. This year I leave. My friend has a full time job working as a receptionist and a long term boyfriend. She’s turned into a full blown adult in a matter of four or five months. We looked around TK Maxx (where we sometimes spend hours), the huge Waterstones at the top of town with the dodgy disabled access, some charity shops and Boots. We only had a few hours to catch up because I had to get back home, but it was quality time. Life moves so quickly it’s so nice to press pause and breathe.
I went to this month’s Verbalise in Kendal on Friday. I loved the atmosphere. It was in the Warehouse Café. I did one of the seven open mic slots available, in front of an audience of people I barely knew I sat on a chair and read a few poems, the audience were lovely and I had an amazing time. The spotlight acts were amazing.