It’s a bit late, but Happy New Year! I have something exciting to share with you today. First though, apologies for the lack of updates; it’s been a hard and unpleasant year so far. I have been plugging away with fundraising through videos on social media, mainly YouTube (this is my channel: https://youtube.com/@jenny.rowbory ) and TikTok (here: https://www.tiktok.com/@jennyrowbory ) and Instagram (here: https://www.instagram.com/jennyrowbory ), where it is an uphill struggle to try and build a platform and community, so I’d appreciate any follows and engagement on those accounts to help with the algorithms, and therefore with fundraising! I mainly talk about books, films and TV on those accounts and I usually end each video with a fundraising message.

There is a bigger fundraising plan in the works coming later this month since I am turning 40 years old at the end of April and I’m desperate to reach the target fundraising amount by then. So we’re going to have a big push before then (the idea is tied in with the number 40!) and we’ll let you know more about the plan soon.

For today though, I have a new video of a duo of original poems by me, collectively called ‘Suite of the Moon and Sun’. It is here on YouTube:

Individually the poems are called ‘When Winchester Cathedral swallowed the moon’ and ‘When Winchester Cathedral swallowed the sun’. I hope that you find them meaningful, helpful and thought-provoking. They were inspired by when the artist Luke Jerram’s travelling artworks ‘Museum of the Moon’ and ‘Helios’ were installed for a while in Winchester Cathedral. My aunt, Viv Ferris, who volunteers as a guide at the cathedral, sent me a photo of ‘Museum of the Moon’, which was the instigation of my inspiration for these poems. I hope that you enjoy them, and in this world of short-form content and short attention spans, I hope that you can find a few minutes to listen to them. I will share the video of the poems on most social media, so you can share or repost the video on whatever social media platform that you are on.

Thank you so much for your continued support and I am so grateful for all the donations. It doesn’t go without notice that there are many people who regularly donate; thank you so much for your generosity. You keep hope alive.

<p>The post First update of 2026, new poems, and fundraising update first appeared on Jenny Rowbory.</p>

We ask that you donate the price of a “ticket” on her fundraising page here: https://gofundme.com/savejenny – simply donate however much you think the performance is worth after viewing it. Even if you don’t usually like poetry, Jenny’s performances will change your mind! She’s truly talented. Hopefully the video will touch you; it will make you laugh and make you cry.

It has also been a labour of love to make the video and, given the state that Jenny is in, she has pushed herself further than she should, at great physical cost, in order to provide a stunning experience for you all, to raise money.

With some of the poems, Jenny performs them straight to camera; with other poems, she has used video footage that her late father filmed when he was on his walks, and she has done a voice-over of those poems.

We thought it would be lovely if we all pressed ‘play’ on the video at the same time, so that we are all watching the video at the same time. We invite you to start watching at 7pm on Friday 18th July 2025 (BST – British Summer Time). It would be wonderful if you could leave a comment on the YouTube video to let us know that you are there, and to leave a comment on the video saying which of the poems performed is your favourite – Jenny especially would like to know this.

The video is unlisted on YouTube, which means that you’ll be getting your money’s worth because the general public won’t be able to see it, only people who have been given the following link: https://youtu.be/XG0watkxXSM (this is where you can watch the video).
We trust you all to be honest and donate the price of the “ticket” if you watch the video. Please do share the link with others, explaining about giving a donation if they watch the video.

The video will be available both before and after 7pm on 18th July, in case you’re not available at that specific time to watch it together as a community, supporting Jenny’s fundraising effort.

Thank you so much for all your support and kindness. Jenny hopes that ‘A Summer Night’s Dream of Poetry’ will be a balm for your soul.

The running order of poems in the programme:

• Jabberwocky by Lewis Carroll
• I Know Why The Caged Bird Sings by Maya Angelou
• An extract from ‘i carry your heart with me’ by e.e. cummings
• ‘Tis a fearful thing by Yehuda HaLevi
• A Better Resurrection by Christina Rossetti
• Why English is so Hard by Unknown
• The Way Through The Woods by Rudyard Kipling
• Invictus by W.E. Henley
• All That Is Gold Does Not Glitter by J.R.R. Tolkien
• Sonnet 29 by William Shakespeare
• For Right Now by Jenny Rowbory

Here is the video that explains what is wrong with Jenny’s neck, details of the surgery she needs, her bed-bound life, and why it is getting more urgent that she gets this neurosurgery as soon as possible:

A book of Jenny’s collected poems ‘We Are The Winter People’, which is also raising money for her surgery: https://mybook.to/WinterPeople

<p>The post A Summer Night’s Dream of Poetry with Jenny Rowbory first appeared on Jenny Rowbory.</p>

I would love it if you were to share the YouTube link to the poem (https://youtu.be/X_Ce50LxkBE) on social media and/or send it privately to your friends via messaging apps. I hope that the poem will bring you light, as well as raising a bit of money for my surgery.

I give permission for the poem to be read aloud at any gathering or church service this Easter or during the run-up to Easter, as long as you remember to say that the poem is ‘by Jenny Rowbory’. A text version of the poem can be found in the photo below (click on it to zoom in), if you would like to read it aloud at a gathering:

If the church or gathering space has multimedia capabilities, then the poem could just be shown via the YouTube video.

Now, for the good fundraising news! I’m always grateful for any donation, no matter how big or small, towards the neurosurgery. I think that it’s always good to share with you all when a large donation has been made because it brings great encouragement to everyone. A donor, who would like to remain anonymous, has given £5000! Thank you to that donor and to every single person who has donated or shared my story and shared links. Thank you so much for your continuing support. Happy Easter for next Sunday! I hope that you enjoy the poem. Let me know your thoughts about the poem in the comments below!

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Fundraising page: gofundme.com/savejenny

If you need a reminder on any details of what is wrong with my neck, the surgery that I need, and why it is getting more urgent that I get this neurosurgery as soon as possible, you can watch this video on YouTube:

<p>The post A surprise poem and some good news first appeared on Jenny Rowbory.</p>

I’d be grateful if you would share this video on your social media accounts.

In the video, I ask that if anyone who is watching it enjoys it, that they consider reading my story at https://www.gofundme.com/savejenny – about me needing urgent and essential neurosurgery in New York that isn’t available here in the U.K.
I know that times are hard but I’d be grateful for any donations in this fundraising push.

In this video is a cento poem. A cento is a collage poem, a patchwork poem, composed of lines written by other authors. In the cento poem in this video, I have used bits and pieces from the lyrics of Taylor Swift songs. I hope that Taylor Swift fans will have fun identifying from which of her songs each line is derived. A little quiz, if you will. There are 64 lines from fragments of lyrics from her songs (NB some of the lines are from the same songs); can you name all the song titles that they they come from? Good luck and enjoy!

Who knows, if enough people share the video, maybe Taylor Swift will see it!

Thank you. x

<p>The post My Taylor Swift cento poem to help towards fundraising my neurosurgery first appeared on Jenny Rowbory.</p>

Links:

Why Jenny needs life-saving surgery: jkrowbory.co.uk/about-me/

Buy the poetry book (and more copies as Christmas gifts!) on Amazon: amzn.to/3C1ZXum or Jenny’s website: jkrowbory.co.uk

You can also donate extra here if you’re able: gofundme.com/savejenny

Please share widely!

<p>The post A special video message from Boris Johnson, David Attenborough, Donald Trump, Louis Walsh and Prince Charles for you, to spread the word about Jenny … courtesy of Rory Bremner 😉 first appeared on Jenny Rowbory.</p>

It will be hosted by Paul Kerensa (co-writer of BBC hits ‘Miranda’ and ‘Not Going Out’, comedian, author of fabulous books and wonderful human being).

Exclusive content of the book launch:

• The acclaimed composer Janet Wheeler has created an incredible piece of choral music using the words of one of Jenny’s poems. This piece will be premiered at the online book launch.

• Elliott Frisby of Monkeynut Audiobooks will be in conversation with Angharad Price (the narrator of the audiobook) about why they wanted to publish this book.  

  • Wayne Jacobsen (Who is Wayne Jacobsen?) performs a reading of his favourite poem by Jenny  

‘We Are The Winter People’ is being released as an audiobook, ebook and paperback on 8th September 2021. This book is the next big push in Jenny’s Herculean fundraising attempt for life-saving surgery in the US, which is not available to her in the UK.

About the book:

We Are the Winter People is the collected poems of Jenny Rowbory. The diverse range of poetry deals with love, loss, imagination, memory and the poet’s ever-changing relationship with faith. Despite the struggles depicted within the work, it is an ultimately empowering collection, filled with strength, determination, and hope.

We Are the Winter People contains poems to ‘come alongside you and hold your hand’ and will offer you compassion and company in your times of struggle. Beautifully written, sometimes playful, and sometimes painful, the poetry speaks to our souls as we try to navigate this life together.

Buy the Book

There are print, ebook and audiobook versions of We Are The Winter People. The paperback and ebook are available through Amazon. The audiobook is available through all the usual places where you buy audiobooks (Google Play, Audible, iTunes etc.). The audiobook and ebook will also be available to buy here on this website (more money will be raised if you buy them directly from this website as that means there won’t be distributors taking a certain percentage of the money).

About Jenny Rowbory:

Jenny Rowbory was born in 1986 in Ashford, Middlesex, and currently lives in Wales. She is a published poet (‘Rainbows in my eyes’, Longman, 2009). During her first year at university in 2004, she became ill with a virus that caused severe Myalgic Encephalomyelitis (inflammation of the brain and spinal cord), causing Jenny to become bed-bound and acutely ill for the last sixteen and a half years.

In May 2015, after genetic testing, Jenny was also diagnosed with Ehlers-Danlos Syndrome. This genetic disorder causes the body to produce faulty collagen. The biggest problem for Jenny is that the faulty collagen causes the ligaments and connective tissue in her neck to be lax, which means that it can’t support the spine or skull. So the vertebrae and skull move around and subluxate (subluxation is like dislocation) and blood flow is severely reduced, causing increasing numbness.

This neck instability became life-threatening and Jenny had to have an operation in January 2020 to try to fuse her neck in place to save her life, as well as a decompression surgery for Chiari Malformation. Unfortunately the fusion surgery was not a success and Jenny became a lot more disabled and it’s too dangerous for her to move her neck or head at all.

The only neurosurgeon in the world who specialises in fusion (and fusion revision) surgeries and invasive bolt traction testing to determine the correct fusion position for highly complex Ehlers-Danlos Syndrome patients, is in the USA. Jenny is clinging to life by the skin of her teeth and has been trying to hang on for over a year while trying to fundraise enough money for the three surgeries that this neurosurgeon has said Jenny needs to have a hope of staying alive and regaining some sort of quality of life.

The money raised by the sales of We Are The Winter People will go directly towards this goal of getting Jenny to America to have the life-saving surgeries she desperately needs. If you would like to donate further, you can do so through her fundraising page, which is gofundme.com/savejenny. Jenny would very much like to stay alive and is very grateful for any donation you’re able to give.

Jenny hasn’t been able to move her head off her pillow since the unsuccessful fusion surgery. She can’t look down, up or side to side. She can’t be washed or have her pyjamas or bedding changed because if she moves her neck even a tiny bit in the wrong direction, she does massive extra damage to her neck and blood flow is reduced further. Any extra bit of damage could very easily kill her. Nurses have tried and failed to wash her or change her clothes without seriously harming her neck further. The subluxing vertebrae have moved the neck into a structure that obstructs her airway quite a lot and she is always in respiratory distress. There is nothing more any doctor in the UK can do for her. So she has been left in this condition until she can raise the money needed to be treated by the surgeon in New York.

Only a patch of ceiling directly above Jenny is within her field of vision. The only part of her body that she’s seen since the operation are her hands, which she can raise to her eyes to see but she can’t look down to see anything else. She’s rarely able to look at the screen of her phone, even though she tries to hold it up directly above her head to put it in her field of vision, because doing so damages her neck more. So she has been completely cut off from the world and from other people. Her only solace has been audiobooks. So the fact that an audiobook will be helping to raise the funds for her surgeries is particularly fitting.

<p>The post You are invited to the online book launch of ‘We Are The Winter People’ – the Collected Poems of Jenny Rowbory: 7:30pm BST 8th September 2021 first appeared on Jenny Rowbory.</p>

If you want to catch up with the full evening of entertainment, you can watch it in its glorious entirety in the video above. Settle down for a two and a half hour viewing of delight.

It’s a warm hug in a time where hugs are scarce. HOWEVER, if time is not on your side this season or if you just want to watch certain acts and miss out others, below are videos which should start at the timestamp of each individual act. Enjoy!

If you do enjoy any of them, be sure to donate to save Jenny’s life at GoFundMe.com/savejenny Be sure to add the fundraising link to any video you share.

TANYA MARLOW’s introduction to the evening

OLIVIA COLMAN’s message

MATTHEW GOODE

Matthew contributed two segments. The first one is his message and his bedtime story reading of The Wind in the Willows:

Matthew’s second performance of the night was the poem ‘A Visit From St. Nicholas’ (T’was the Night Before Christmas)

LEE MACK

This exclusive interview with Lee Mack was divided into three parts. Part 1:

Part 2:

Part 3:

SONORO CHOIR

‘The Lord Bless You and Keep You’ by John Rutter, which Jenny used to sing in the choir at St. Felix School:

Comedy from PAUL KERENSA

Poetry from World Slam Poetry Champion HARRY BAKER

Poetry by JENNY ROWBORY read by the actor ANGHARAD PRICE

Angharad Price performed two of Jenny’s poems. The first one, ‘For Right Now’:

Jenny’s second poem, ‘Gethsemane’:

Singer-songwriter GRAHAM KENDRICK

With a song that is special to Jenny, ‘Crucified Man’:

ADRIAN PLASS

BARTHOLOMEW DOBSON

With a magnificent rendition of The Wompom Song:

JUSTINE ASHFORD

Jenny’s English and Drama teacher from her years at St. Felix School, Justine Ashford, reads a scene from ‘The Lion, The Witch, and the Wardrobe’. Jenny played the role of Mr. Tumnus in a school production.

A GAMESHOW starring SIMON ROWBORY, KEITH ROWBORY, TANYA MARLOW, JOE CASSELS AND VICTORIA HOCKING

The premise: All television shows face being deleted forever from existence. Only one can be saved. Each player has to make the case why their favourite TV show should be the one to be kept.

This gameshow was shown in two parts. Part 1:

Part 2:

HOME AND AWAY

Two of the cast sent a message:

ANGHARAD PRICE

Angharad performs Jenny’s favourite poem, ‘Caged Bird’, by Maya Angelou:

A sketch starring JO MARTIN, RAKIE AYOLA, LAURA ELPHINSTONE, EMMA LOWNDES and MARTINA LAIRD

This sketch is ‘A Group Therapy Session For People Addicted to Using Film Lines in Their Everyday Speech, written by Jenny Rowbory

MICHAEL HIGGINS

Michael performs an exquisite, magical and moving piano solo of ‘Clair de Lune’ by Debussy.

Thank you so much to everyone who watched and to everyone who has donated so generously. It is all very gratefully received. We still have a long way to go though to reach the fundraising target. If you haven’t donated yet, you can do so here: GoFundMe.com/savejenny

<p>The post Catch Up with the #SaveJenny Evening of Entertainment first appeared on Jenny Rowbory.</p>

As you would have gathered from the post-surgery update (you can read it here), I desperately need another operation to fix what happened in the last one and being fused into the wrong position without the correct amount of intraoperative traction. I’m fighting for my life every day.

It’s not only the stagnation of lymphatic fluid and reduction in the volume of blood flow to my head and body that continue to be massive problems now (though those are my main problems), but also the operation doesn’t seem to have fixed the dangerous instabilities of my atlas and all the cervical vertebrae below it. Every day brings new deterioration with loud snaps/cracks issuing from my neck, bringing with them further movement/subluxation and a new position of my skull and vertebrae. My skull is sinking further and further into my neck, being pulled downwards with a force so hard that it’s too strong to pull back against. My atlas and skull are constantly clicking in and out, subluxing. It’s the same with the vertebrae below. They also feel bent and buckled beneath the fusion and metal plate in my head and can’t hold the weight.

Most importantly, all the workarounds that I used to have for getting a little bit of lymph moving and getting a bit more blood through to my head have disappeared. The “magic” place on my head/neck (as described in the last update), which when lifted up, used to bring blood flooding back, has been swallowed up into a place that I can’t reach, due to the operation. If I get lucky, I can just about find a place as close to the Magic Spot as I can reach, where I can feel a small sharp spike, then use the edge of my pillowcase to press on the tiny tip of this spike and lift it slightly, allowing a bit more blood to get through. But I then have to stay extremely still, not even swallowing, otherwise I get moved off that tiny pinprick of a spike and the blood and lymph stop moving again. Most of the time I can’t even find the spike though (and it depends on what angle I’m at) and it seems to be getting swallowed up too as my skull sinks further into my neck.

That edge of the pillowcase and that spike are the things that have been keeping me alive for the last few months. Thankfully I have a hospital bed so I can raise the top of it up at an angle in the late afternoon, with my head still attached to the pillow as it rises, so that I can get some food down me and watch a bit of a TV show or film or listen to an audiobook.

I’ve struggled to breathe and swallow for over a decade but recently though, after the biggest crack and movement of my neck to date, it feels like something sharp is pushing hard in a line all across the front of my neck at the top, against the airway, pinching it almost shut. I think it’s because my skull is crushing downwards hard and so the structure of my neck at the front is being jammed up into things it wouldn’t usually be in contact with. In any case, whatever is causing it, I’ve never struggled this hard to breathe. It’s relentless and horrible to try to live through. I feel like I’m being strangled and choked.

As you can tell, I really need an operation. But everything has been held up by the pandemic. We can’t even have the initial video consultation with the new neurosurgeon because he needs new, more recent MRI scans and we can’t get them done for him because Shrewsbury hospital are only allowing ‘urgent’ issues to use the MRI, given the pandemic. So we’re currently in a battle to get them to categorise my situation as urgent.

So the next step will be the MRIs, then the first consultation with the new neurosurgeon (one of the only ones in the world that I would now trust to fix me, after the last disaster) via video, as he’s in New York. Given how hard New York has been hit by the pandemic, if the new neurosurgeon agrees to take me on, I don’t know when it would even be safe to go to New York for an operation. This is all assuming I’d be able to fundraise a very ridiculous amount of money to go there and get the operation. The amount I’d need to raise (though we don’t know how much until we’ve had the consultation) seems impossible and everything feels a bit hopeless.

I’m just focusing on trying to stay alive every day, with new levels of disability, new levels of complete exhaustion and weakness ever since the operation, the like of which I’ve never experienced; it seems that my M.E. has deteriorated.

You may have seen me around on twitter and facebook a bit more than usual. I tend to use them as distractions when I’m most scared. However, it has come with a hefty price and the muscles in my arms and hands are pretty destroyed and weakened by the increased use. They’re seizing up, cramping, twitching and spasming, so I may have to force myself to cut back on the social media. It’s just such a lifeline though that I use to pull me through. But I don’t want to lose the use of my hands completely so I may have to be more sensible and not reply to people who tweet me or who leave comments on my facebook posts, even though I desperately want to.

In other news, I’ve been quoted in a New Statesman article! Three weeks ago I was asked to give a quote in response to the question ‘how does it feel to have everyone suddenly enter the same space of social isolation as you and doing stuff online?’. I sent a really long quote to the journalist, but, understandably, she was only able to use a couple of sentences of it in the actual article. In case you want to see my full quote, I’ve included it below:

At the beginning of the lockdown, when there was a massive influx of people coming online, over and over again I saw many saying ‘I’m so scared’, ‘I feel lost’ or ‘my anxiety is bad’. My initial reaction was: ‘is there anything I can do to help them? Is there anything I could say that would make them feel even a tiny bit better in this situation?’. That night, words and phrases started echoing around in my brain and wouldn’t relent. In the morning, this is the poem that poured out of me as a result, which I put onto my website immediately and shared the link on social media: https://www.jkrowbory.co.uk/2020/03/new-poem-for-right-now

In the next few days, with the majority of people at home and suddenly available online, I was excited at first to have more people around. But then I felt lonelier than ever when I realised that I was still excluded because of how ill I am (I can’t speak so I can’t do phone or video calls; I also can’t keep up with any text communication for long (or sometimes, at all) because my hands and arms get destroyed and damaged quickly and people don’t understand when l don’t reply or only reply once or twice and then fall silent). Unlike me, everyone else still gets to keep in contact with their loved ones, their family and friends. They get to chat with them via calls or messages. I knew that it was a big change for them, going from face-to-face, physical contact to this, but to me, it wasn’t isolation; they still could have the communication and love that human beings crave and need.

Suddenly all the things that I haven’t had access to while bed-bound and for which I have been asking for years to be made available to all those who are bed-bound or house-bound, were suddenly magically possible, now that abled people wanted them. Those who are ill and disabled have always been told ‘tough luck; that’s impossible’ or ‘that’s too inconvenient’.

Online classes and so many other resources (that I’m personally too ill for, but which I know other disabled people need), both for adults and children, became available to watch online; some theatres made plays available to stream; Universal Pictures are making cinema releases available to watch at home. It was upsetting because before Coronavirus, there was already a whole population of people, bed-bound and house-bound, who needed these things. But we weren’t considered important enough or of value enough; nobody cared about us in our isolation or if we had access to things.

A more trivial example is that film plots always got spoiled for us before they finally got released digitally or on DVD because everyone else had seen them at the cinema already and it was almost impossible to avoid spoilers online.

I’d been asking a couple of authors for years when their books were going to be made available as audiobooks (I’m unable to read physical books or e-books), only to be fobbed off repeatedly with ‘soon’ or ‘I have exciting news on my impending announcement on the audiobook very soon’, only for them never to emerge and years passed. Then suddenly, the day everyone went into lockdown, one of these authors announced that all his books were now available on audiobook. Funny that. It does make you feel worthless though and like nobody cares about disabled and ill people.

Plus everyone else in self-isolation (those that are healthy) have so many options available to them. They can write as much as they want (a book if they so choose) without their hands seizing up, they can watch as much TV or as many films as they want without it being too much for them and they can read as many books as they like. They can dance or jump around, sing, do creative things, learn new skills or knowledge, exercise, make silly videos to share online, walk around the house etc.

There are so many new things popping up online for people to join in with to feel less alone, but they are still inaccessible to me and make me feel even more different to all the “normal” people.

I’d give anything to have the type of freedom that everyone else in self-isolation has. It feels like an embarrassment of riches to me.

You can find the full New Statesman article here: https://www.newstatesman.com/science-tech/coronavirus/2020/04/isolation-covid-19-coronavirus-lockdown-disabled-ill-elderly

<p>The post April 2020 Health Update and Other News (I’ve been quoted in the New Statesman!) first appeared on Jenny Rowbory.</p>

Last May, I injured my head. The whole of the right half of my head became numb and if any of the right half of my head was touching anything, including my pillow, then more blood would be cut off and the right half of my head would become even more numb. This rendered me stuck lying on my left side constantly while I tried to manoeuvre my head into weird positions in order to start to feel blood trickle back into the blood vessels in the right half of my head. It only ever partially got some feeling back and I could never get blood back in the specific area on my head where I’d been injured.

Unfortunately, since the end of December, the situation suddenly worsened and my WHOLE head and neck became affected instead of just the right half. Ever since then, if I have anything touching any part of my head or neck, even my pillow, the circulation to my head gets more and more cut off and my head becomes more and more numb until my vision starts to go and I have to jerk my head up quickly off the pillow and prop myself up so that my head and neck aren’t touching anything so that I don’t pass out.

Due to all of this, out of the 24 hours in a day, I now can only lie down flat with my head on my pillow for 2 hours. It’s a big change for my body to be semi-sitting up most of the time; my heart is failing and constantly deteriorating from not being fully horizontal. It just can’t take it; there was a reason that I had to be lying flat for 13 years.

Constantly having to hold my own head and neck up (apart from the two hours a night when I put my head down) also means that I’ve had zero sleep since the end of December and the sleep deprivation is horrific and only getting worse. I don’t know how I’m still going and able to semi-coherently write this but here I am.

Even though my heart is too unstable and my body too fragile to be moved, even by ambulance, I had to decide if I was going to risk death by going to a hospital in Birmingham to have a specialist MRI to find out what’s going on in my head, brain and spine. In the end, I had to risk it because I couldn’t carry on like this.

Those of you who know my family will be aware that we also had to move house because we couldn’t afford to rent there anymore. So we timed the MRI and the house move for the same day (8th February) because I knew that I would struggle to survive one trip, let alone two. On the 8th, I was taken by ambulance to Birmingham, had the MRI, then was taken by ambulance to our new house on the return trip. I’m still alive but not without convulsions/seizures and serious heart events along the way.

Everything since then has been a disaster. Not only is there the damage, deterioration (especially re heart failure) and agony from the severe physical exertion of the ambulance journey and MRI, but our new house has been a catastrophe for me. Those of you who know about my illnesses, know that noise is agony for me and that noise is the equivalent of a physical activity, which makes my symptoms more severe. My parents tried to make my room soundproof but upon arrival, we very quickly discovered that it hadn’t worked at all. So it has been torture with the roadworks, busy road, frequent (military?) jets overhead, loud drips from an overhang, as well as being able to hear every movement and footstep of my parents inside the house. It’s unbearable and I don’t know how I’m going to carry on like this.

First we have to focus on the medical stuff though because I NEED to be able to lie down without blood being cut off to my head and passing out.

We got the results of the MRI yesterday. They showed that I have:
• reversal of the cervical lordotic curve (which is probably what is cutting the blood off – I really need a doctor to do a Doppler Ultrasound on a home visit to check but I don’t know if that’s possible)
• instability at cranial cervical junction demonstrated on flexion and extension positions
• translational movement of basion with respect to odontoid process in flexion-extension noticed on T2 W sagital sequence
• degenerative changes in cervical intervertebral discs at multiple levels

It turns out that in patients with Ehlers-Danlos Syndrome (even in the vascular type, which is what I have), a minor head injury can cause all sorts of consequences, like the ones above, which may have accelerated what the EDS was already doing to my body.

The problem now is that there’s only one doctor in the whole of the UK who specialises in craniocervical instability (CCI) in EDS patients (it’s critical that the doctor treating it has an in-depth knowledge of EDS because EDS affects the type of interventions/treatments that can be done safely). Given that he’s the only doctor in the UK, he’s very busy and has a long waiting list so we’re currently waiting to hear back whether he can take me on or not. In the meantime, I have to carry on in this state, working hard to hold my head and neck up 22 hours of the day. My whole body is falling apart with the strain of it. It’s not bearable. But I’m still here. My parents are looking into finding a quieter place to live but I don’t know if that’s going to be possible. And my body can’t take being moved again.

To end on a slightly lighter note, the only good thing that has happened is that my parents have unearthed my books from childhood and teenagehood. I’m not able to read them but it has made me very happy to see some of them. I doubt that any of you will be interested in them but I’m going to post the pictures here anyway because it brings me joy to see them.

First up are the comics. I have at least 3 stacks of individual comics as big as this:

(I also have many, many Beano annuals but I wasn’t able to get a photo of them)

I can’t believe I have so many Beano copies from 1992. 1992! They cost 28p back then. This one is from April 1992:

I loved Roger the Dodger, Minnie the Minx, Ivy the Terrible, The Bash Street Kids and the Numbskulls. Here are some photos of those comic strips from 1992 to get your nostalgia flowing (you can click on them to get a better view):

I also loved the comic ‘Buster’. Here are some from 1993-1997 (I remember the free trick pencil and the free joke nail very well!):

My favourite strip in Buster was probably Cliff Hanger:

There was also Vid Kid, Chalky, Double Trouble, X-Ray Specs and Sweet Tooth:

I have a few copies of BVC (the Big Value Comic) too. I remember Fuss Pot, Milly O’Naire and Penny Less, Ivor Lott and Tony Broke, Odd-Ball and Book Worm:

I don’t have all that many copies of the Dandy. I wasn’t as keen on it. This is the one that I remember most:

Beryl the Peril was my favourite strip in the Dandy:

 
Next up is The Hippo Book of Hilarious Poetry:

It’s from 1989 so it was probably my first poetry book. I remember loving it but looking back now, some of the poems were a bit…weird. Like these (as always, click for a closer view):

But my favourite one was about the English language:

 
Next up was my favourite of all favourites: the Malory Towers series by Enid Blyton.

Just seeing the covers of my copies makes me smile. They’re a bit worse for wear because I reread them so many times (and I think Dad accidentally dropped one in the bath a long time ago!) but I love them:

In the first book, the new girls, including Darrell Rivers, are taken to see the Headmistress, Miss Grayling. Her words to them had a big impact on me regarding the way I wanted to live my life and the person I wanted to be. Here are Miss Grayling’s words:

Then in the final book, mirroring the experience in the first book, Darrell, now Head Girl, takes the new girls in to see Miss Grayling. What Miss Grayling says to Darrell afterwards is what I always dreamed someone would say to me at the end of my school career. I hope I became that sort of a person anyway. Here it is:

 
The next book is the Prime Minister’s Brain. I’m really glad that my parents found my copy of it as I remember it so well and so fondly. They don’t make them like this anymore!

I vividly remember the illustrations and was happy to see that I’d recalled them correctly and there they all were. They stir so many memories:

 
Seeing my old copy of The Dark is Rising sequence was wonderful:

 
We also found my GCSE copy of An Inspector Calls, complete with my notes in the margins. I remember trying to make my handwriting tiny in order to fit more in. I last saw it in 2002 for my GCSE exams. Here it is:

 
We also found my copy of Daddy-Long-Legs by Jean Webster but then discovered that it had my aunt’s name written inside it so the book must have belonged to her a very long time ago:

 
There are lots more but I think that’s enough for now. I’ve enjoyed it, even if nobody else has.

<p>The post A lot has happened first appeared on Jenny Rowbory.</p>

Courage, dear heart
~ Aslan

Frodo: I wish The Ring had never come to me. I wish none of this had ever happened.

Gandalf: So do all who live to face such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.

God is love. Those who live in love, live in God and God lives in them.
~ The Bible

Be who you are and say what you feel because those who mind don’t matter and those who matter don’t mind.

The following are my favourite lines from poems – these reassure me that what I feel has been felt before and thus I am not alone.

From the poem ‘I know why the caged bird sings’ by Maya Angelou (full poem here):

But a caged bird stands on the grave of dreams
His shadow shouts on a nightmare scream
His wings are clipped and his feet are tied
So he opens his throat to sing.

The caged bird sings with a fearful trill
of things unknown but longed for still
and his tune is heard on the distant hill
for the caged bird sings of freedom.

From the poem ‘De Profundis’ by Christina Rossetti (full poem here) :

I strain my heart, I stretch my hands,
And catch at hope.

From ‘Invictus’ by W.E. Henley (full poem here):

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

From ‘A better resurrection’ by Christina Rossetti (full poem here):

I have no wit, no words, no tears;
My heart within me like a stone
Is numb’d too much for hopes or fears;
Look right, look left, I dwell alone

From ‘A Hymn to God the Father’ by John Donne (full poem here):

I have a sin of fear, that when I have spun
My last thread, I shall perish on the shore;
But swear by thyself, that at my death thy Son
Shall shine as he shines now, and heretofore;
And, having done that, thou hast done;
I fear no more.

From ‘When, in disgrace with fortune and men’s eyes’ by William Shakespeare:

For thy sweet love remembered such wealth brings
That then I scorn to change my state with kings.

From the poem ‘Wrestling Jacob’ by Charles Wesley:

My strength is gone, my nature dies,
I sink beneath thy weighty hand,
Faint to revive, and fall to rise;
I fall, and yet by faith I stand,
I stand, and will not let Thee go,
Till I thy name, thy nature know.

Yield to me now–for I am weak;
But confident in self-despair:
Speak to my heart, in blessings speak,
Be conquer’d by my instant prayer,
Speak, or Thou never hence shalt move,
And tell me, if thy name is Love.

From ‘Shooting Flowers‘ by Justine Ashford:

You knew we choose what will last,

that it is a gift, this seeing,

and that the present may slip into the past

<p>The post Words that help me first appeared on Jenny Rowbory.</p>