Goodness me, it has been a minute since I updated you all. The past month has been swallowed by the medical. About three weeks ago I had sepsis. It was all very dramatic and I’m still living with a lot of pain and other ramifications, but in all for something as serious as Sepsis, I’ve come off rather lightly.

In really lovely personal news my first collection of poetry is going to be published by Seren in early 2022! This last year has been very difficult. I haven’t left the house other than to go to hospital. However, it has meant I finally had time to go through my medical notes and write some work based from them. I honestly don’t think I’d be putting out my first collection so soon without the pandemic – I simply wouldn’t have written enough. The amount of workshops and other creative nutrition I’ve been able to access is wonderful.

Speaking of creative nutrition, Stanza Poetry Festival was online this year and a storming success. There was a memorial event for Roddy Lumsden, and it toed the line of warmth and genuine poetry talent needed to make these things work. It was lovely to hear from his family and friends, to be introduced to his early work. As a poet living with a life limiting illness myself, I can say that there is no greater compliment than love – both personal and professional, and if an event as heartfelt as this happened in honour of me I would be bowled over.

Sadly, the above was live. However, all of the next things I’m going to discuss below are still up on the Stanza website until the 31st March.

A personal favourite of mine from the festival was Ella Frear’s poetry film. It discusses a strange phenomenon I’ve also noticed amongst poets – only about half of us drive. It discusses why this may be, and looks at motorways, service stations, and teens singing Abba at 10pm from their car. It really was very excellent.

Another was Raymond Antrobus, who is a deaf poet and quite possibly one of my all time favourites. This reading speaks for itself. I hope you enjoy it as much as I did.

Finally, I absolutely love Jericho Brown. His work always leaves me breathless. One advantage of internet based festivals has been putting faces to names. His reading style, and general personality, is an absolute delight, and I’ve since been looking for him reading on YouTube nonstop. See if this gets you hooked also.

I think you’ll agree with me when I say 2020 has been a tough year. Not only on a collective level, but a personal level. We’re all living through these experiences, yet have different personal ramifications financially, personally and professionally. A hugely important support network for me during lockdown and subsequent months has been the Writing Squad. Every Wednesday we have a poetry support group where we talk about the highs and lows of our weeks, and discuss the ever changing landscape of the arts scene. It has been wonderful to develop friendships over the past few months, and in amongst all of the awful things happening to the world, it has given me hope.

Since the last time I’ve written on here loads of things have happened to me personally and professionally. In a matter of weeks my comic is going to be published in the Breakthrough: Our Time anthology, which will be for sale on the ‘shop’ tab soon. This has been a scheme funded by ACE England, Lakes international Comic Arts Festival and Flying Penguin Press. Here’s a sneak peak. My artist Michael Lightfoot is incredibly talented, you can find more of his work here

“I didn’t realise how inaccessible much of the Lakes was to people in wheelchairs until I needed one. The title of this poem is the truth.” @HodgsonWrites’s poetic response to Ruskin’s View in Kirkby Lonsdale. For more from #ContainsStrongLanguage visit: https://t.co/gwbBuX578z pic.twitter.com/k7CtRdkn6m

— BBC Arts (@bbcarts) September 26, 2020

During the Festival weekend I was involved in the Passing Words event, Ruskin’s view panel discussions, reading with the Dove Cottage Young Poets, and excitingly, I appeared on BBC Radio 4’s Front Row! It was a lovely experience. You can listen to it on BBC sounds here, I’m at 25ish minutes, but I’d really recommend listening to it in full – Kate Clanchy, Zosha Wand and many others are also featured and it’s a really interesting programme.

https://www.bbc.co.uk/programmes/m000ms0m

Phew! I didn’t realise how busy I had been until I started writing all of this down. On the 10th July this year I had Ileostomy surgery. It changed the way the my bowel works and made a stoma which is connected to a bag. One benefit of staying in the house for the last 200 days is that I am now very much used to this new feature of daily life, which is a bonus. Also, during lockdown I had a mental health crisis. I feel very fortunate this happened during lockdown also. Why, you may ask? I didn’t feel like I had to continue as normal – it was okay that I didn’t have a brave face because no one had one, and it forced me into dealing with the things I had let daily life shove out of sight. Interestingly, my stoma bag has helped to improve my mental health, because I’m in less pain. A huge win. I’m still going through CBT and I hope slowly I will get to a better place.

Goodness me. 2018 has certainly been a challenge so far! I can’t believe its already February – and that I leave my teenage years behind and turn 20 tomorrow!

So I had tonsillitis, which wasn’t fun. I had gastroenteritis and a really bad flare of my neurological bowel problems as well. Then, my tube broke meaning I had to go to endoscopy to get it fixed. I luckily avoided a hospital admission because it happened on a Wednesday (It’s a Monday to Friday service!). Thanks to my subcutaneous fluids I could stay at home overnight, then go home again after the procedure. My tube snapping is classed as a medical emergency because I cannot tolerate anything orally; the only way I could describe my tube breaking is that it is like someone jumping up on you – at any time on any day of the year – and saying “right. From now until you go to a hospital one and a half hours away and have an operation you can’t have any food or water”. It’s scary.

I am also under investigation for a condition called cyclical Neutropenia – which is a condition whereby your white cells reach very low levels every 21 days. By ‘low’ I mean chemotherapy style low, so that’s why I have been picking up every bug under the sun – and refuse to meet up with anyone who is sick (sorry, to those I have cancelled at the last minute, it’s nothing personal). My small fibre neuropathy in my hands has continued to be painful, and my dislocations due to my Elher Danlos Syndrome seem to have been worse as well – explaining why I haven’t been blogging or doing my YouTube channel recently.

My medications have been making me feel very spaced out over the last couple of months. Nerve pain is a very tricky beast to tame, if you aren’t on it the pain is horrendous, like nothing I can describe – but when you’re on it you can feel quite detached and spaced out.

In better life news I am very pleased to say that I had two poems published in Acumen and Under the Radar magazine, which were very welcome mail!

In great life news I will be running an event this year at Litfest in Lancaster! I am going to be running a talk and Q and A session on starting a BookTube style channel and starting friendships online. I remember looking at this event last year, when I was thinking about starting a BookTube channel. Little did I know that the very next year I would be running it – and that my channel would have 2,000 subscribers! I still can’t believe I have reached such a huge milestone. Thank you to every single person who watches and reads my thoughts. Knowing people care about me and my opinions makes things so much easier to manage. You can book to come along on the LitFest website.

I will also be performing alongside two other Wayleave poets on the poetry day at Litfest. It would be lovely to see you there.

While on the thread of thoughts I should address that I haven’t been replying to letters this month. I am dictating this and everything I do is very difficult at the moment – but I promise I will reply soon. I feel really rude because quite a few of them are from before Christmas; but as you’ll gather from this post life has been pretty hectic coming in to 2018!

Hello! I’m back on here, finally! I have been having problems with my hands, which I’m not going to talk about because the last month has otherwise been lovely. The meds space me out, my hands are numb and sore – but that’s it. Meh. Moving on…

At some point in 2018 my first poetry pamphlet will be published by Wayleave Press. I am completely gobsmacked and thankful. I read the email five times consecutively. It has certainly been a good start to the year! I have so many people to thank for helping me realise this  dream. Thank you so much to the Wordsworth Trust for funding our young writers group – Dove Cottage Young poets – and to every single person that has worked with me on my poems. Just off of the top of my head (I will forget someone, but I blame my meds) Kim Moore, Clare Shaw, Brewery Poets, Mrs Holman and Miss S whom I showed my first ever poems to; every magazine that has both accepted and rejected my poems (I have had some very personal rejection letters, which have helped my confidence and spurred me on) – and to you, reading this and watching me on YouTube. People listening to what I have to say has meant that I have gained the confidence to aim for this.

So, moving on. How was your Christmas? Mine was the best one I have had since I have been poorly – which is massive. We started Christmas a day early, and my grandparents came over.  It was really lovely. We all just relaxed (avoided politics), and attempted to turn our brains off! I love my grandparents more than I can ever describe, they are the most selfless and lovely people you could ever meet. We sat and looked through some of the photo albums from when they got married way up to when my mum was in her early twenties. It was amazing to see how alike we all are, and the similarities that have been passed down.

On Christmas Day everyone came in to my room and we opened our stockings together. I made stockings for my parents this year so it was a real family affair. We used to go and sit on my parents’ bed, but my ‘little’ brother is now about six foot tall and mornings are the worst time for my blood pressure. I got the most gorgeous bobble hat, which I have barely taken off – in fact I wore it in my last video! Mum and I wanted to do the ‘posh’ thing and open our presents AFTER the meal… but the boys of the house got itchy feet – so we opened our presents once I was finally out of bed. I am a very lucky young lady. I got a Sizzix Big Shot machine, which cuts shapes out by only twisting a handle. The shapes are hugely intricate and gorgeous. I nearly cried the first time I used it, because I can’t really use scissors too well anymore. I finally have some crafty freedom back! We then went out for Christmas dinner. How lovely! We have never done it before, and never thought we would. However, over the last year my medical routine has grown to a sizeable portion of the day, so if mum had been cooking I would have barely seen her except for when doing medical stuff. Christmas dinner is a very special meal, and really is the only one that still upsets me. So, we went out to Toby Carvery, and I took some of my PO BOX letters and gifts to read. It was the best thing I have ever done. I sat and read these lovely letters – and some very gorgeous gifts. I didn’t feel sad or strange while they were eating – because at home there are so many memories attached to even the table setting – but while out I felt really content.

Now, in another break with tradition, we went out and did the Boxing Day sales. I know this is a rather controversial thing to do, but both my mum and dad have worked Christmas Day, Boxing Day and New Years Eve/ Day, many times due to working in the Emergency services.  Town was pretty busy, and I did manage to garb some bargains. However, people can be pretty rude when you are in a wheelchair and there is a bargain to be had – at one point a cashier was so rude to me  (after over charging me) I actually ended up saying “Just because I’m disabled doesn’t mean I can’t do maths!” He didn’t even look slightly embarrassed when I was right. He just saw the wheelchair and made assumptions. Very annoying! But things like that are a daily occurrence, and didn’t impact on the day much at all.

I just stayed in for New Years Eve. I learned last year that it’s pretty boring unless you are drunk! In fact, I was asleep at midnight. I don’t know what you expect to happen when midnight strikes, but it’s always a let down.

A happy new year from me! I’m very excited for this coming year. It’s going to be a good one, I can feel it.

First of all I’m going to start with the crap medical stuff. My symptoms have suddenly taken quite a dip. I am losing sensation in my right hand and some fingers in my left hand. This seems to confirm my neurological diagnosis, and the fact that it is degenerative. Even despite this, I am feeling so much better than the last time I wrote. I know it is sad, but I’m nowhere near as upset as my last post. This is because I opened a PO Box and I have been really enjoying receiving the first few letters. I’m going to reply to them today. I feel so much less alone. My symptoms have been getting worse over the last 6 weeks, but I just assumed I was having an EDS dislocation flare. I am getting stiff in the night, unable to move without strong meds, and now the sensation loss. I am in the very fortunate position that I have the two best doctors I could dream of, who are going to try and talk on Monday. One is local, and one works in a large city hospital. I’m finding writing with a pen difficult, and am trying to teach myself how to do it with no sensation. Then, my arm aches so I am struggling to do most things. I am using dictation software right now, so I’m sorry for any grammar mistakes. I have invested in a book rest, meaning I can still read easily – there is no way I’m giving that up!
My new PO BOX address is:
LETTERS TO HANNAH
PO BOX 147
CARNFORTH
LA5 5BF
It would mean the world if you had the time to write a letter. I can look at them when I am feeling down, and hope to create a pen pan style relationship with a whole host of people. (It would also be helpful if you could include an international reply coupon or UK stamp if you live here).

Over the past week I have been a bit radical by Hannah standards 😂. I have got my seconds ear piecing done, and have dyed my hair dark purple. These are things I have wanted to do for a long time, and there is no better time to do such things than when you feel a bit rubbish.

 

Last wednesday I went to see Lemn Sissay live at the Brewery arts centre. What an amazing guy, he pinned you to your seat, looked right at you. He had the room crying with laughter one minute, and actually crying the next. His play, ‘something dark’, proves both his strength of character and linguistic skill all in one. I was absolutely exhausted and so couldn’t stay for the Q&A, but still, all this time later think about that play a lot.

I also went out fabric shopping last week. I went to a shop that only stock one roll of a fabric and then never stock it again. It is called Colours of the Rainbow and is based in Carlisle. I went in and bought three metres of ZEBRA fabric. Why am I so excited by this? Well, people with Elhers Danlos Syndrome (EDS), are called Zebras because while every zebra is recognisable as a zebra, every zebra has a different amount of / pattern of stripes — no two are alike. This is the same for us, while we all have EDS, no one has exactly the same experiences/ symptoms.

I did a poetry reading with Lancaster Spotlight in a care home last week. It was such a wonderful experience. I think the residents enjoyed our music/ poetry/ spoken word, and it gave me so much to be thankful for. I chatted about the colour of mobility aids with one of the residents, it was quite amusing!

Anyway, thank you once again for reading what’s going on with me. It’s difficult, but it’s so much easier now that I am happy and raring to go!!

#MeToo when I was in year 8 the textiles room had art stools with the holes in the seat so that you can carry them. A boy thought it would be funny to put a pen up my skirt through this gap, and ram the pen right in to my private area. I cried and cried when I got home that night, it hurt like hell, but put it down to boys being boys. I didn’t tell anyone because I thought they wouldn’t take me seriously. I only realised about 6 years later once I had read Everyday Sexism, that it was completely wrong. How are we conditioned in to believing things like this are okay?

I have a better week this week. I’m not as sad, I’m just upset at my body I think. I am learning to sew using a second hand sewing machine. I am making all sorts! I just need someone to cut out the pattern and help me pin – and away I go! Dislocating fingers can’t stop me! I thought my troublesome forefinger and middle finger were on the mend, but they have swollen up pretty huge so they are in splints now.

I have been doing lots of poetry admin – which is difficult when you’re down, so I’m glad to be feeling a bit better and getting back on with things.

I went to the Lakes International Comic arts festival this past weekend. I got given a few review copies, spent more money than I should have, and met lots of people who I have been emailing. There were so many accepting people in town. I didn’t get stared at, I got smiled at. People noticed I was a person! That is quite a rare thing for Kendal, I usually get never ending stares and scowls.

My exciting announcement is being pushed back to Monday, so look forward to that!

Hello all! I am back from my longest ever break from my blog. I decided to take a step away after I started to feel like things were getting on top of me. I have so much routine to my day, more than I will ever speak about, and we have been challenging so many different people to try and make decisions in my best interest – I just became a bit tired of everything I guess, and a little emotional.

Talking about the nicer things that have happened this month, I have bought a second hand sewing machine and am learning to sew. I am trying to develop some affordable pretty medical items. If you can think of any items that would be beneficial to you or anyone you know, let me know!

I performed at Borderlines festival, Lakes Alive, Spotlight and the in the Grasmere In-the-Round Theatre. It has been a full on month putting my body through the nights out, but goodness me it is so worth it. I love performing and writing poetry. It saves me in so many ways.

I have had a sizeable number of appointments, both near my home and a fair trek away. It is so worth it when the people you trust, and are personable. People are really trying to understand my condition and make it more comfortable for me. I have seen: The specialist dental service, the palliative care doctor, the palliative care nurse, the hospice near me’s physio, the urologist, the neurologist and my gastroenterologist, wheelchair assessment, District Nurses and the hospice for some lovely respite. I am not saying all of these for sympathy or anything like that. I’m just trying to say that on top of my daily grind I have appointments and other things that I must do in order to stay as well as possible. Some people think that my mum has quite an easy life looking after me, but it is all of the jobs that people don’t think about relating to serious illness. Ordering and drawing up medication, GP appointments, not being able to shower alone, needing help to get up and dressed.

I am going to be announcing a HUGE project over on my YouTube channel next week. I have applied for funding and it has come through. It is going to be amazing.

Hello! I have had a jam packed week and am absolutely exhausted but happy. I was at the hospice for a bit this week. I had a great time! We made Mauam popcorn (my brothers review was “terrible” and my mums was”It’s going in the bin…”). I also made some rainbow cookies. Below is my expectation vs. reality… Apparently they were very hard and got better as they ‘matured’ (went soft…).

 

I watched Beauty and the beast on the cinema screen they have in the teenage zone. I also went out in a huge minibus kitted out with things that could strap my wheelchair down. I went to a huge craft shop and had a little look around. We came back a little quicker than we anticipated though because I had a migraine. I am going to start marking them in my diary as I seem to be having them every sixish weeks. I hate them!

I have also done a few hours work experience at my old school alongside the librarians. Over the eight years that I have been at school they have been a constant, lovely presence. We have had our fair share of laughter, and I wanted to give them a hand to do a few jobs over the summer. Obviously they weren’t overly physical, but they were hopefully a couple of things that they could tick off of their huge lists!

Last night I went to see Hot Ice with my family in Blackpool. I am beyond wiped out and exhausted, but my goodness I am so happy we went! It is a very well organised and flamboyant dance show that is on ice. If you have never been it is sooo worth seeing. I think they are in their last week of performing for this year, but there are still tickets left – so book quickly! I wish you could take photographs, but you couldn’t. They did every style of dance you could think of. My favourite routine was this irish/ tap routine they did (on ice!!). The wheelchair access seats weren’t comfortable, but they gave a good view. My only quibble was that they do not offer a free carer ticket. This means that I would have to pay £30 x2 to go out with my carer – which is not going to happen. Most places have modernised enough to recognise that free or reduced carers tickets are essential – why haven’t they moved forward? I have the DVD of the show we saw last night due to my poor memory. I am going to watch it lots and try and make everything I saw stick, because it was incredible. I wore my sunglasses throughout due to light sensitivity, but it didn’t detract from the experience at all.

I also loved seeing my grandma so happy. We went out for a meal beforehand and I did what I normally do – sat knitting little prem baby hats on my loom!

My collapses have been quite difficult to manage this past week, but we have still managed to do quite a bit!

My phone broke this week. I got it for christmas and can’t afford a new one at the minute. I have sent it off for repair, and am hoping the quote to fix it isn’t too massive. It just stopped working! It is outside of warranty but I am hoping the company are reasonable. Meanwhile, I have been posted a phone by a very kind person, and I am very grateful.

I have posted a video on Monday of this week talking about all of the books I read whilst I had my infection. There is one really different one I read called Notes from a Coma. It is set in Ireland and I really enjoyed it.

Hello everyone! A bit of a different post this week. I thought I would post a list of services I have found really helpful that I wrote for a friend the other day, as she said they are really helpful. I have also made a video discussing these which you can find HERE.

Listening Books – A service for ANYONE with any form of disability. You definitely qualify. It is £20 a year and you can borrow up to 10 audiobooks a month. I listen to this when I am exhausted and can’t read. They have tonnes of new releases, its great!

CEA Card – You have to send in a copy of your PIP entitlement, a passport photo and pay £6. This means you get a free carer at the cinema and some theatres.

If you go in to your local library with a copy of your PIP entitlement you can order any book to come to your local branch for free (usually 60p a book) and also get no late fees.

The Trafford Centre – A long day out, with smooth flooring and access to every shop.

Preston – No tricky curbs on the main street as they have pedestrianised it. You can’t get to the poetry section in Waterstones though due to no lift. Grrrr…

If you ever book any events through ATG tickets tell them you are disabled. You have to bring proof of your disability to every event you attend (a CEA card is applicable). Mum and I got a pair of tickets to see a show in Manchester Palace theatre using this scheme for £19. Not each, that included both of us!

Radar Key – Bigger cities often run an accessible loo scheme, whereby you need a key to get in to the loo. This keeps them really clean. You can buy a radar key online for a couple of pounds on amazon. It’s a bit of a chunky thing, but I keep mine in my purse or bag and sometimes it is SUCH a god send!

 

I think I will do my normal life type post some time this week. Thanks for reading! X