Chronic, by Mary Tynan

I’m the person you don’t see –
The person with ME,
The person who’s hidden
Away in her room;
Often in bed,
Stuck in her head,
Maybe reading a book,
Or listening to a tune,
Making friends on Facebook or Twitter

We’ve been forgotten
For many a year,
But come a pandemic,
And we appear;
Now we can watch a play,
Go to a class,
See our friends on a video call –
Suddenly, we’re part of it all,
Included at last

But what happens to us
When usual returns?
Do we also return –
To our rooms, our cocoons?
Will we be forgotten again
When you’re making new plans –
When things return to normal?

Mary Tynan

If You Build It, They Will Come

Happy Birthday to the Arts Centre!

We built it, and wow, did you come! In your droves, from every corner of the earth (although I don’t think we’ve cracked Antarctica yet)!

Notes From Xanadu – the online arts centre – is one year old today! We opened with a bang, featuring 21 pieces of new work over the May bank holiday weekend, and established a global audience right from the start, hitting six of the seven continents during the four days of our launch.  Born in the early days of the Covid 19 pandemic, we reached out to the growing online community with something unique, and we have continued to do so and to grow as one lockdown led to another.

To celebrate our birthday, we’re doing something similar to that launch weekend, over three days. We will be releasing new work at intervals over the weekend. We have photography, knitting, writing, comedy, music and more. Links to each piece will be provided via our Twitter and Facebook accounts as they happen. If you are reading this, and you have friends who you think might also be interested, please share the link with them in whichever way suits you. We will be delighted to get shares of any kind to any or all of the work featured during the birthday celebrations.

Going forward, the plan for the arts centre is to release work as an when suitable submissions are received, and to share news about what’s going on in the theatre, rather than having a regular slot each week. There will be posts in Twitter and Facebook when this happens, but alongside that a mailing list will be set up, so that anyone who wants to can be notified whenever new stuff is released. We will let you know when that is in place.

This will allow me, as artistic director, to concentrate more of my energies on the theatre: our regular events such as Stitch ‘n’ Bitch and Canadh agus Caint, alongside new plays and concerts (there’s a brilliant one of those coming up later this month, more details during the weekend).

Although we have a large team of contributors, actors, backstage helpers and so on, Notes From Xanadu is basically run by one person – a person who is chronically ill and disabled (would you be surprised to hear that the arts centre and theatre both operate out of a bungalow in the west of Ireland?) – so a regular PR campaign is unsustainable. But for this birthday weekend at least, we can pull out all the stops!

Enjoy the weekend! Let the party begin!

Mary Tynan

Everyone who works on Notes From Xanadu and Xanadu Online Theatre is a volunteer. If you would like to join us in any capacity, please send me an email on notesfromxanadu@hotmail.com.

 

I Need a Vaccine, by Mary Tynan

Lockdown has been going on for a long time.  If you live in one of the countries who are lucky enough to have a good supply of vaccines, the end might be in sight.  For most of us however, shortages are dictating a slower pace.  Inspired by comedy song writers such as Futzy and the Bitch, our artistic director Mary Tynan decided to take a humorous look at the situation.  The backing track is by James Keaney.

 

Theatre at Home for Christmas

Fancy a trip to the theatre this December? In contrast to the usual visit to the pantomime, Xanadu Online Theatre invites you to watch an alternative Christmas show from the comfort of your own home – all you need is a computer and an internet connection.

Started in May 2020, Notes From Xanadu is, as far as can be seen, the first online arts centre in the English-speaking world.  Since its beginning, it has attracted visitors from countless countries on six different continents (we’re still trying to crack Antartica)! On 23 September, we launched Xanadu Online Theatre with a variety concert featuring artists from two different continents and three timezones.  December sees the debut performances from our in-house theatre company, with a double bill of classic tragedy and comedy: Riders to the Sea by J M Synge and The Proposal by Anton Chekhov.  Tickets are free of charge, but limited, and must be booked in advance at https://www.eventbrite.com/e/theatre-at-home-for-christmas-tickets-129660125927.  Admission is per connection, not per person, so you can have as many people watching with you as you like.  More details are available at the website at theatre.notesfromxanadu.org.

The arts centre and the theatre are the brain children of Mary Tynan, a chronically-ill, disabled creative living in the West of Ireland.  For interviews please contact Mary on notesfromxanadu@hotmail.com.

Why Lockdown has been a Lifeline for me, by Mary Tynan

Lockdown may have made life smaller for many people, but it made mine bigger.

Unlike most people, I wasn’t that upset when the first coronavirus lockdown began.  As far as I could see, it wasn’t going to make much difference to my life.  But I was wrong: it made my life better.

As a chronically ill, disabled person (I suffer from the neurological condition Myalgic Encephalomyelitis) living alone in a rural location, I had long been used to spending most of my time alone.  Many weeks, if I didn’t visit a shop, I didn’t see anyone.  And shopping was becoming harder – I had already begun the transition to grocery delivery before the pandemic.  I connected with people mostly via telephone or, more and more as time went on, via the web.

I used social media such as Facebook for two main purposes: to keep up with people that I rarely saw, such as friends from my previous life as an actor in London, and to make new friends, especially within the ME and chronic illness communities.  I joined support groups, book clubs and other interest groups; I attended and ran virtual pub quizzes and parties.  I also used the internet for solo activities, such as practising and learning languages on Duolingo, and studying everything from Archaeology to Cyber Security.  I was well-practised at living life online.  What happened early this year is that everyone joined me.

Right at the beginning of Lockdown, some friends and I decided to set up an online school.  Ar Líne Le Chéile was small, and part-time, and wasn’t intended to replace or compete with anything that children were getting from their regular teachers – rather, it was to help combat loneliness and isolation.  In this it succeeded, and our small class of primary school children had formed great friendships by the time we finished in June.  As I was already an experienced teacher, I took an active part in this, the highlight of which was the weekly multidisciplinary lesson where we made virtual visits to such places as the British Museum, NASA and the London Underground.  It was a lovely feeling to have my own class again, for the first time since 2008.  A side effect of this for me was that my old interest in coding was reawakened by a Scratch class run by another teacher (Philipa Farley, the writer of our Farley’s Philosophy column), and I ended up learning the Python programming language during the month of April when Pluralsight offered free courses for a month.

There was so much life online all of a sudden!  Musicals by Andrew Lloyd Webber and plays from the National Theatre, for example, were available to watch free of charge.  I attended an online 80s concert with a couple of friends, who didn’t know each other previously; we watched in our separate homes and chatted via text at the same time.  I joined an online choir, and played board games with friends all over Ireland via WhatsApp.

I had an online magazine, Notes From Xanadu, predominantly an arts review, which had been semi-dormant over the preceding five years.  I had written a couple of Covid-related articles, and was in the process of revitalising it.  Then I had an idea: instead of relaunching as just a magazine, why not do something novel and create an online arts centre?  I set the date for the May bank holiday weekend, and got in touch with artists of all genres.  Over the four days of the launch we had 20 different features, ranging from writing to opera (world-renowned soprano Ailish Tynan was one of our first contributors) to puppetry.  We had visitors from numerous countries on six continents, and have continued to gain new followers and artists since then.

Although I don’t generally manage to get out much, I always do something for my birthday, whether that’s a restaurant and/or pub visit, or a small party at my house.  I decided not to let the virus stop me this year, and organised my first audio-visual virtual party.  I had guests from as far apart as London and New Mexico, and we played games, performed music, chatted and generally had a “night out.”  Unfortunately, problems with internet connections kept a few people away, but the evening was enough of a success for me to decide to develop a theatre as part of the online arts centre.

On 23 September 2020, Xanadu Online Theatre was born, with a launch concert/variety show featuring artists from three different time zones, and an invited audience from countries stretching from Finland to the US.  Unlike other similar ventures that have begun since Covid 19 gave us the New Normal, which use Zoom and other such platforms, this theatre is embedded in the Notes From Xanadu website and uses the open-source software Jitsi, which very much fits ideologically with the values of the online arts centre.

As part of the launch concert, I decided to perform a short scene with an actor friend in New York, Ash Reddington, and thus I found myself practising my craft as an actor for the first time in almost 6 years.  I have since set up an in-house theatre company, and we are having our first show in December.  Thus, as a result of the virus, I find myself where I thought I would never be again – in the rehearsal room, preparing to act on stage in front of a live audience.

This is the first in a series.  Watch out for accounts of other people’s positive lockdown experience in the coming weeks.

 

Family Matters – A One-Scene Film

Family Matters is written and acted by Mary Tynan (our artistic director) and Ian Macnaughton (our Covid Lives columnist).  Cinematography is by Graham Gunner, and location is courtesy of Jon Axford.

Evening into Night, by Mary Tynan

Mary is an actor, writer, and director, as well as the artistic director of Notes From Xanadu.  She does not claim any expertise as a photographer, but is merely blessed to live in a beautiful location.  As well as landscapes, she also likes to photograph food!  You can view Mary’s actor website at www.marytynan.ie

May for ME

May is ME (Myalgic Encephalomyelitis) awareness month. It’s probably the awareness month for several other medical conditions as well – let’s face it, we have more than 12 of them after all, so maybe we should be going for a week, or even just a day?

Whatever. I’m not going to be posting about ME every single day of May (we’re already on day 4, and this is my first one, after all). But I am going to be posting. Today, I’m going to start with a short description of the illness, and then tell you a little bit about my experience with it.

ME is a debilitating neurological illness with numerous symptoms, including bone-weary exhaustion, muscle pain, joint pain, stabbing neurological pain, headaches, intolerance to light and sound, sleep disturbances, light-headedness, orthostatic intolerance (inability to stand), inability to regulate body temperature, persistent flu-like symptoms, nausea and IBS, fibromyalgia, brain fog, difficulty concentrating, short-term memory loss, slurred speech and more. But the overriding symptom that differentiates it from every other illness is called post-exertional malaise (PEM). This means that patients have a severe, delayed reaction to exercise, and in many cases never return to the same baseline they were at before whatever sent them into a “crash.” Have you ever massively overdone it on the weights at the gym, and been in so much pain you were unable to move the next day? Add that to having influenza and the fatigue you might feel after doing your first marathon, and you might have some idea how it feels. Plus, if you ever do manage to return to our metaphorical gym, you will only be able to lift half the weight you could before. This is no exaggeration: I moved my sofa a couple of inches in mid-December last year (pushed it with my whole bodyweight), and I was confined to bed for weeks. I almost missed Christmas Day – I did miss singing with the church choir on Christmas Eve.

My ME journey began in 2004. I got a flu-like illness that never went away, although I suspect I had already had fibromyalgia for some time before that – it had been misdiagnosed as ankylosing spondolitis. My doctor thought the original illness may have been glandular fever. Strangely enough, the diagnosis made me feel a bit better – I didn’t know then what I know now about ME. I took a three (long) days a week teaching job and tried to just get on with it. That didn’t really work, and I had to resign from the job. However, shortly after that I discovered a local chiropractor, and spent a lot of money on intensive treatment which put me into about 95% remission, or at least that was what I attributed it to. I later learnt that it is common to go into remission in the first couple of years, and for it to come back again a few years later, in a more permanent form.

I spent the next few years working as an actor and also as a supply teacher – two very physically demanding jobs. I thought I was fine. I even did the couch-2-5k programme at one point with my friend Tracy – although I was a terrible runner: I could almost walk faster than I could run. I would train in the gym every day if I could, and I attended Body Pump and Pilates classes. I went clubbing when the opportunity presented itself. I did physical theatre and danced in musicals.

But at a certain point in 2010, I felt the illness return. In retrospect, it had probably been creeping up on me for a while, but I had been too busy to notice. I was temping in an office Monday to Friday, teaching GCSE English catchup lessons in a secondary school on Saturdays, and directing and playing the leading role in a play for which we were rehearsing three evenings a week plus Sunday. (I am a bit of an overachiever, but this is also what it took to make enough money to live on).

My next play was a physical theatre piece. I had to tell the director that I couldn’t do that part of it. Luckily, I had one of the speaking parts, which didn’t necessarily have to involve a lot of movement. At this point, I could no longer run, work out, or go clubbing, but I could still do the dancing required for a musical a couple of years later, go to two tap classes a week, swim, and walk for miles. Standing up for more than a few minutes was beginning to be a bit of a problem though.

Fast forward to late 2014. I had to give up the intervention teaching job I had been doing (in the same school, but through an agency) for several years. By this point, I could only swim for about ten minutes, there was no tap dancing, or cross-city walks, but I could do yoga. Standing for more than five minutes was problematic, as was navigating steps. I had one last stab at work a few months later when I took over the lead role in a play after someone fell ill. I learnt 70 pages of script in five days. I had worked with the director previously, and he set up the stage in such a way that I could sit down whenever I felt the need to. In the third week of our four week run (with a lot of my friends in the audience – it was St Patrick’s Day and I had arranged for there to be a half-price ticket night), everything went black around me, apart from the face of the actor who was right in front of me. I almost passed out on stage. I finished the run, but I haven’t worked since.

A few months later, I left London and moved to a house in the country in the West of Ireland. At first, I could still walk 5 k each day. It would use up at least half of my daily energy, but I prioritised it because made me feel good mentally. Things have got progressively worse since then, and I recently acquired an electric wheelchair. Some of the simplest household tasks are beyond me, such as changing my bed sheets. Although I live in a dormer bungalow, I rarely go upstairs.  Sometimes I don’t eat, because I’m not well enough to wash the dishes afterwards.

I have already mentioned the sofa incident. In early 2018, I spent three months in bed after a one-week visit to London. I can no longer travel by any form of public transport on my own. Before Covid 19, I was travelling to my nearest city maybe every 5 – 6 weeks.

ME is what is known as an invisible illness. If you see me, it will be because I am having a good day. If I am having a bad day, week, or month, then I won’t be going anywhere. If I seem to be enjoying myself at your birthday party, I probably am – but I will be paying for it for weeks afterwards. This is the reality of life for people with ME, especially those who live alone. There is no treatment and no cure. We are the #millionsmissing.

Mary Tynan

To understand more about PEM and energy debt, please read my article “Living Life with a Low-Capacity Battery,” which was previously published in The Mighty and Yahoo News.

An Deireadh Seachtain

Oíche dé hAoine,
Ré don bhóthair,
I mo shuí sa chúl le deartháir agus driofúr.
Ag imirt “I Spy,”
Ag canadh amhráin,
Máthair ag tabhairt seacláid dúinn.

Deireadh an turas,
Teach sa bhaile mór,
Iompairthe isteach i lámha cinéalta d’athair.
Sceallóga prátaí,
Uncail ag aoibhiúil,
Boladh de Players Uimhir a Sé agus de móna.

Lá eile,
Sa cistín tí feirme,
Aintín, uncail, colceathracha agus Seanaithair.
In aice leis an soirn
Te agus codlatach,
Ag eisteacht le scéalta faoi daoine anaithnid.

Tráthnóna de Domhnaigh,
An filleadh,
Go dtí scoil agus leabhair is obair is baile.
Aistear níos ciúin,
Ag athmhachnamh,
Beidh muid arais an tseachtain seo chugainn.

Máire ní Theimhneáin

 

The Whole Picture

I’m sitting in the Melon Café, drinking a skinny latte, when the first touch of pain hits the back of my head.  Instantly, the ghosts appear.  There I am 4 years ago over by the window with my cousin James the first time we ever ate here (I know it’s the first time, because I never ordered the full breakfast again – too big).  There we are again a few months later the time I accidentally banged my head against the pillar (never sat in front of it again).  I’m here in groups, in twos and alone.  There I am last week with Carol, discussing the film she wants to make.  And then there are the future versions of me, some of them with people I don’t recognise.  None of them look any older than I am now, so I know I won’t be coming here for much longer, but I don’t speculate as to the reason why.  The possibilities are endless.  I know from experience that I have at most half an hour before the pain becomes excruciating, so I pay my bill and go home.

One of the interesting things about holograms is that if you break one into little pieces, each fragment still contains the entire image.  One of the many interesting things about life is that it works in a similar way.  One instant of a life contains the image of the whole – past, present and future.  This is not common knowledge however.  Just as you need a special light in order to be able to view a hologram, you need a special form of sight to be able to view your life.

I developed this ability at the age of thirteen along with the headaches.  The pain came out of the blue and with it the visions.  I was in my bedroom in my childhood home.  I saw myself as a baby, a toddler, a young child, as I was now, as a young woman, with others and by myself.  My mother must have heard my involuntary gasp, because she soon appeared at the door.  She explained that both the headaches and the “gift” as she called it ran in the female line of our family.  She answered my questions as best she could, although she knew no more that I do now of the origin or ability of this power.

The ability is location specific.  My first experience was in my childhood home, and I saw only times when I was there.  I only see other people’s lives where they intersect with mine.  I can’t see the future in places I haven’t been to yet, and I can’t tell you your future unless I am a major part of it.  I’m no fortune teller.

The gift cannot reliably tell me what will happen, but it can often indicate what won’t.  For instance, I never saw myself in my parents’ house older than perhaps mid-twenties.  My mother cautioned me not to speculate on what this might mean: she said that way lay madness.  As it happens, my parents were both killed in a car crash when I was 24, and I sold the house shortly afterwards.

I didn’t have a headache at their funeral, and there were so many real-time people there that there would have been no room for ghosts.  However, I visited the grave on my own many times afterwards, and on several occasions felt the familiar pain at the rear of my skull, and saw the many times I would visit in future.  I saw myself a lot older, with white hair and a stick, which was the first intimation I ever had that I would not share my parents’ fate of dying young.

When I’m introduced to Michael by a mutual friend I recognise him instantly.  I have seen him in my flat many times.  As we make love for the first time, I play these visions over in my head and for once allow myself to speculate as to why I have never seen him look much different.  A year later we marry, and move into a new home together.  I see us decorating, doing the garden, cooking together, relaxing in front of the fire on a winter’s evening.

When I fail to get pregnant after two years, Michael wants to discuss options – fertility tests, adoption.  I know there is no point.  The time has come for me to tell him what happens when I have one of my headaches.

He listens attentively, but I think he finds it hard to believe what I am saying.  I can’t blame him for that.  “Look,” he says.  “Even if I accept that everything you say is true, it might just mean that we will be living somewhere else when we have a baby.  Let’s move.  Let’s put the house on the market tomorrow.”  He is shouting.

I take his hand and try to speak very clearly and calmly.  “Michael, it’s not just this house, or this town.  Do you think I would never bring my child to visit my parents’ grave?  A defeated look comes over his eyes and he pulls his hand from mine and leaves the room.  I think he doesn’t want me to see him cry.

Six months later we move to Australia.  Michael wants to go, and I would do anything to save the relationship at this point.  On our first day we go to the beach, and I have one of my headaches.  To my delight, I see us building a sandcastle with a little girl.  Six months later I am with child.

It’s 20 years later.  I’m standing at my parents’ graveside with a young woman, my daughter.  It took us this long to make the trip.  Even now Michael wasn’t able to accompany us.  My vision was correct but my interpretation had been all wrong.  I did bring my child to visit my parents.  She just wasn’t a child at the time.

In the distance I can see elderly me with the white hair and the stick making her way up the path.  She is alone.  I don’t try and figure out what that means.

Mary Tynan

Poe: Macabre Resurrections

Second Skin Theatre

St Mary’s Old Church, Stoke Newington

If you go to see this production, and I certainly recommend that you do, please remember to wrap up warmly.  It was freezing, and this did distract slightly from my overall enjoyment of the show.  However, the subject matter was also chilling, so perhaps the cold was deliberate!

Second Skin have taken five of Edgar Allen Poe’s stories and woven them together into a festival of horror.  Set in the church where Poe is said to have worshipped as a boy, this is environmental theatre at its best.  The staging takes place all over the church and grounds and every nook and cranny is utilized to eerie advantage.

The five pieces are linked together by the preacher (Stephen Connery Brown) who steps are dogged continuously by the raven (David Hugh), right up until the dramatic denouement of the show, presided over by the demonic Prospero (Conrad Williams) when the preacher finally descends to his doom.

I had two favourites among the Poe adaptations woven into this drama, the first being “The Cask of Amontillado,” featuring Owen Nolan and Sarah Scott.  This piece had a good balance of characters and effective use of different locations, the ending being particularly poe-esque.  Both actors played their parts to perfection.  In particular, Owen Nolan’s journey from drunken lechery to abject terror was both believable and frightening.

The second piece I especially enjoyed was “Premature Burial.”  Again, the characters were well balanced and the location was utilised effectually.  Michael Amariah’s Jake grabbed your attention from the first moment, Steve Brownlie’s performance as Clive had a dream-like, otherworldliness to it, and Sarah Feathers sympathetic portrayal of the grieving widow was especially poignant.

As well as the cast, the sound and lighting were true stars of this show.  The background music (and other noises) contributed hugely to the grisly atmosphere, and the sinister use of lights, candles, projectors, smoke and even electric heaters all added to the supernatural ambience.  This is stage management at a level not normally seen on the Fringe.  Black box it ain’t!

Overall, I highly recommend a visit to Poe: Macabre Resurrections.  You will be cold, you will be scared, but you can buy a glass of wine at the interval, and if you wait around afterwards a woman will come and mop up the blood.

Running till 4 December 2011 Tuesday-Saturday at 8pm, Sunday at 8.20pm, St Mary’s Old Church, Stoke Newington Church Street.

Mary Tynan