Catch Up with the #SaveJenny Evening of Entertainment


 
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’ (It was the Night Before Christmas)


 
LEE MACK

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

PART 1 starts here:


 
PART 2 starts here:


 
PART 3 starts here:


 
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’, starts here:


 
Jenny’s second poem, ‘Gethsemane’, starts here:


 
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. The first part starts here:


 
The second part starts here:


 
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, accompanied by photos of Jenny before she became ill.


 

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

April 2020 Health Update and Other News (I’ve been quoted in the New Statesman!)

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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: http://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

A lot has happened

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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:

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(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:

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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):

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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!):

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My favourite strip in Buster was probably Cliff Hanger:

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

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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:

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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:

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Beryl the Peril was my favourite strip in the Dandy:

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Next up is The Hippo Book of Hilarious Poetry:

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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):

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But my favourite one was about the English language:

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

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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:

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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:

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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:

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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!

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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:

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

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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:

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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:

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My aunt's name inside the cover
My aunt’s name inside the cover

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

Words that help me

I hope that these words may help you too.

I hope that these words may help you too.

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

Gethsemane

Gethsemane

I close my eyes.
My translucent form drifts into the past
from the bed where I’m lying in the present
and I’m back in that garden with you.
My ghost self glides into your body,
occupying the same exact place in time and space
as you.
Kneeling here,
we reside within each other.
My heart cradles your heart,
beating as one.
We wait together,
the rest of the world falling still – distant and alien
while we hold our breath
and try to beat back the panic.
If it is possible, may this cup be taken away from me
we plead over and over,
desperation and distress
overwhelming the soul to the point of death.
Then the horror of reality:
we are not going to be spared,
we are not going to be rescued,
not this time, not right now.
We are loved
but we are not going to be saved from this.
And it hurts. It doesn’t feel like love.
Each breath stings with grief.
I know this territory well;
my soul is the perfect companion for yours tonight.
We hold on tight.
Your heart cradles my heart.
We are one in Gethsemane.
If it is possible, may this cup be taken away from me.

 

© J.K.Rowbory 2014 – All Rights Reserved
No part of this poem may be reproduced, stored in a retrieval system or transmitted in any form or by any means without the prior permission of the author.

***

If you like this poem, you might like other poems of mine, which you can read in my poetry book ‘Rainbows in my eyes’ (published by Longman). You can buy it from Amazon.co.uk or if you’re in the USA, you can buy it from Lifestream: http://www.lifestream.org/content/rainbows-my-eyes
You may also like to read my more recent poems.

If any vicars/ministers would like to read aloud ‘Gethsemane’ in a church service as Easter approaches, that would make me very happy. Let me know if you do! Please don’t print out copies of the poem though (for copyright reasons).

***

About me:

All the things that you never wanted to know about my life with an acute chronic illness: http://www.jkrowbory.co.uk/2016/05/all-the-things-that-you-never-wanted-to-know-about-my-life-with-an-acute-chronic-illness/

My reading history: http://www.jkrowbory.co.uk/2015/08/what-role-have-books-played-in-my-life/

My most recent poems: http://www.jkrowbory.co.uk/2014/10/ten-years/

Severe M.E. and me – my story: http://www.jkrowbory.co.uk/severe-me-and-me-my-story/

My favourite fictional female characters: http://www.jkrowbory.co.uk/2016/07/my-favourite-fictional-female-characters/

Words that help me: http://www.jkrowbory.co.uk/2016/06/words-that-help-me/

My greatest wishes on my 29th birthday (+ health update): http://www.jkrowbory.co.uk/2015/04/my-greatest-wishes-on-my-29th-birthday/

My Favourite Things: http://www.jkrowbory.co.uk/2013/11/my-favourite-things/

When it hasn’t been your day, your week, your month or even your 8 years:
http://www.jkrowbory.co.uk/2012/12/8-years/

My buzzfeed listicles: http://www.buzzfeed.com/stroopwaffle