Stitch ‘n’ Bitch at Xanadu – April 2021

Our next Stitch ‘n’ Bitch takes place on Thursday, 12 March, at the earlier time of 6.30 pm, in one of the rooms of Xanadu Online Theatre.  For those who haven’t heard the term before, a Stitch ‘n’ Bitch is when people get together to work on their various projects while having a natter and a bit of craic at the same time.

The Xanadu Stitch ‘n’ Bitch is hosted by Aoife Flood, a highly experience knitter, who will be on-hand to answer any questions and offer help; beginners are welcome.  You don’t have to be knitting though: you can crochet, embroider, sew, or do any other craftwork you may have underway.

The event is co-hosted by Notes From Xanadu Artistic Director Mary Tynan.  If you wish to attend, please register by emailing notesfromxanadu@hotmail.com.  See you there!

About our host: Aoife Flood’s knitting journey began on a trip to New Zealand in 2007, when she came across a book of designer knitting patterns while browsing in a shop. She decided that, if she wanted to have these designer clothes, the best way was to knit them herself. So that was it; she got the bug and has been hooked ever since. Aoife will sharing some of her wonderful work with us in a gallery exhibition in the coming weeks.  She is wearing one of her own pieces in the photo.

Xanadu Reading Challenge – April 2021

One of the lovely things about being an online arts centre is that Notes can Xanadu can feature writing and literature alongside other art forms.  With this in mind, we have created a reading challenge for 2021.  Each month there will be a theme, with several sub-categories, and the challenge is to read one or more books each month to fit the topic.  Feel free to add sub-categories, the only rule is that one book each month should be a new read.  The entire challenge can be downloaded in pdf format here.  We also have an Excel spreadsheet, thanks to Karin Hammarstrom, one of our participants, which you can also download, and use to track your progress.

Every month, we’ll introduce the theme and sub-categories in a post like this, and also give some reading suggestions.  Please leave a comment and tell us what you are reading, and whether you are enjoying it, or any other information that you would like to share with your fellow readers.

For April, the theme is Mental Travelling.

Sub-categories:

. a book from an author from a country you have never visited and have no connection to
. a travelogue about a similar country
. a novel about a journey
. a non-fiction book about the history or technology of one or more forms of transport
. a non-fiction book about space travel

Reading suggestions:

. anything by Bill Bryson
. Sovietistan by Erika Fatland
. Eat, Pray, Love by Elizabeth Gilbert
. The Family Tree by Sherri S Tepper
. Endurance by Scott Kelly

I’m reading:

The Phantom Tollbooth by Norman Juster

Come back next month for our May suggestions, and don’t forget to leave a comment below to tell us how you got on in March or April!  Happy reading!

The discussion group for our March reads will be on Sunday, 11 April, at 2pm GMT.  April’s will be on Sunday, 9 May, at 2 pm GMT.  If you would like to attend either of these, please email notesfromxanadu@hotmail.com if you haven’t already done so.

 

Canadh agus Caint

14 April at 7 pm will see the launch of our latest live event, Canadh agus Caint.  We will start off by learning a simple song in Irish, and then see where the conversation takes us.  Irish speakers of all levels are welcome, from complete beginners (we recommend Duolingo) to fluent Gaeilgeoirí.  As usual, you need to register for this in advance by emailing notesfromxanadu@hotmail.com, and a short vocabulary cheat sheet will be sent out with the link, as well as the words to the song.

Canadh agus Caint will be hosted by our artistic director Mary Tynan and contributor Suzanne Ledwith.  See you there!

Ar 14ú Aibrean, ag a seacht a chlog, tá muid ag tosú le eachtra beo nua, Canadh agus Caint.  Beidh muid ag foghlaim amhrán simplí as Gaeilge, agus ansin, tar éis an canadh, an caint.  Beidh fáilte roimh daoine le gach leibhéal Gaeilge.  Mar ghnáth, ní mór duit clarú le haghaidh an imeacht – seol ríomhphoist chuig notesfromxanadu@hotmail.com – agus seolfaidh muid nasc agus focail an amhráin duit roimh an oíche.

Beidh Canadh agus Caint óstailte le Mary Tynan agus Suzanne Ledwith.  Bígí linn!

Server Sponsorship for Xanadu Online Theatre

Notes From Xanadu is delighted to announce that a new server for Xanadu Online Theatre has been sponsored by County Cork company ProPrivacy.  The server will enable us to customise the code for the theatre (we use open source software, in keeping with the philosophy of the arts centre), leading to a smoother and more exciting experience for both audience and performers.

ProPrivacy is a close-knit, family run data protection and cyber security compliance company based in Ireland. The company works with clientele in many sectors ranging in size, from small businesses to privacy departments in large multinational corporations.  It’s lead auditor and GDPR consultant is Philipa Jane Farley; if you think you recognise that name, you would be right – multi-talented Philipa has been writing the Farley’s Philosophy column for us since the arts centre’s launch in May 2020.  The ProPrivacy team have this to say about the sponsorship:

“2020 has been exhausting. More for some than others, but needless to say, everyone’s lives have changed in one way or another, some for the worst and some for the best. Unfortunately, COVID-19 has taken a toll on our entertainment community. It has affected our livelihoods, hobbies and the community around us.

While we may feel that we cannot control events on our own doorstep, let alone, globally, new and fresh ideas on how to charge through and grapple with such unknown times have emerged. New online businesses, video chats and social outreaches over the internet have been the new trends of the pandemic. New ways to connect with people have become a priority in a world where social distancing is now second nature.

This is where Notes from Xanadu has blossomed. Emerging from what was formerly an online magazine with Arts reviews and periodic COVID-19 articles, Notes from Xanadu transformed into a lively and active social page where artists from all walks of life could come together to continue doing what they do best even with the entertainment industry in complete shutdown.

Mary Tynan, who suffers from Myalgic Encephalomyelitis, has overcome extreme personal challenges and advocates to raise awareness of this neurological condition. Mary has taken back her life in a global lockdown and created this forum for her fellow artists to have an opportunity for creativity and to take the stage once again in a transformative way over the internet. And Mary has even dusted off her old coding skills, and learnt new ones, allowing her to customise Notes from Xanadu to her high standards.

As a data protection company fortunate to be able to continue working through lockdown, ProPrivacy got to thinking about how we would be able to make a difference in this industry for which we have a great love. As we have seen the Arts take an enormous knock in this pandemic, Notes from Xanadu came to mind. ProPrivacy took this opportunity to support Mary and her endeavours to grow her platform in a small but hopefully significant way by sponsoring a server for her online theatre. ProPrivacy will continue to supply data protection and cyber security support for Mary to continue running her Arts centre with peace of mind. ProPrivacy feels incredibly privileged to be able to support a woman whose values align with that of our own, inclusive communities sharing resources to enrich those around them.”

The new theatre software is going to be built by Philipa and Mary working together, and we will, of course, share news of the development as it happens.  We live in exciting times for online arts and Notes From Xanadu and Xanadu Online Theatre will continue to do our utmost to stay at the cutting edge of the field.  If you are interested in working with us on a volunteer basis in any capacity, please drop us a line at notesfromxanadu@hotmail.com.

As of 2021, ProPrivacy are expanding their services to support small businesses through their offshoot, The Career Designer. This new line of services and digital products is informed by the company’s primary focus, data protection, privacy, and cyber security, and deals with the inner workings of starting up a business with an online first focus from scratch.

The Career Designer is to be launched within the next few months for people who want to make their ideas pay. It’s about helping people and transforming their skillset into a business, especially for those during this pandemic who are out of work or are struggling to make an income. Philipa and team want to share their many years of business experience and niche skills in an easy to understand way which can help people turn their ideas into stable and thriving businesses. They will walk you step-by-step through the process of building a business from start to finish, accounting to marketing and all the legal requirements in-between. Macro-knowledge for microbusinesses if you will, catering for business construction as well as business maintenance.

If you are interested in The Career Designer or other services offered by ProPrivacy, please visit their website, or email the team at info@proprivacy.ie.

Xanadu Reading Challenge – March 2021

One of the lovely things about being an online arts centre is that Notes can Xanadu can feature writing and literature alongside other art forms.  With this in mind, we have created a reading challenge for 2021.  Each month there will be a theme, with several sub-categories, and the challenge is to read one or more books each month to fit the topic.  Feel free to add sub-categories, the only rule is that one book each month should be a new read.  The entire challenge can be downloaded in pdf format here.  We also have an Excel spreadsheet, thanks to Karin Hammarstrom, one of our participants, which you can also download, and use to track your progress.

Every month, we’ll introduce the theme and sub-categories in a post like this, and also give some reading suggestions.  Please leave a comment and tell us what you are reading, and whether you are enjoying it, or any other information that you would like to share with your fellow readers.

As March is the month of St Patrick’s Day, the theme is All Things Irish.

Sub-categories:

  • a book by an Irish author
  • a book about Irish history
  • a travel book about Ireland
  • if you are Irish – a book as Gaeilge. Children’s books are fine, but try to challenge yourself.

Reading suggestions:

  • Rachel’s Holiday by Marian Keyes
  • The Story of Ireland by Neil Hegarty
  • Hitching for Hope: A Journey into the Heart and Soul of Ireland by Ruairi McKiernan
  • Short Stories of Padraic Pearse: A Dual Language Book (English and Irish Edition)

I’m reading:

Piano Mhín na bPreachán le Cathal Ó Searcaigh.

Come back next month for our April suggestions, and don’t forget to leave a comment below to tell us how you got on in February or March!  Happy reading!

The discussion group for our February reads will be on Sunday, 7 March, at 4pm GMT. March’s will be on Sunday, 11 April, at 2 pm GMT.  If you would like to attend either of these, please email notesfromxanadu@hotmail.com if you haven’t already done so.

 

 

Come back next month for our March suggestions, and don’t forget to leave a comment below to tell us how you got on in January!  Happy reading!

The discussion group for our January reads will be on Sunday, 7 February, at 4pm GMT. February’s will be on Sunday, 7 March, at 4 pm GMT.  If you would like to attend either of these, please email notesfromxanadu@hotmail.com if you haven’t already done so.

Stitch ‘n’ Bitch at Xanadu – March 2021

After a very enjoyable first outing, we will be holding a second Stitch ‘n’ Bitch on Thursday, 11 March, at 7.30 pm, in one of the rooms of Xanadu Online Theatre.  For those who haven’t heard the term before, a Stitch ‘n’ Bitch is when people get together to work on their various projects while having a natter and a bit of craic at the same time.

The Xanadu Stitch ‘n’ Bitch is hosted by Aoife Flood, a highly experience knitter, who will be on-hand to answer any questions and offer help; beginners are welcome.  You don’t have to be knitting though: you can crochet, embroider, sew, or do any other craftwork you may have underway.

The event is co-hosted by Notes From Xanadu Artistic Director Mary Tynan.  If you wish to attend, please register by emailing notesfromxanadu@hotmail.com.  See you there!

About our host: Aoife Flood’s knitting journey began on a trip to New Zealand in 2007, when she came across a book of designer knitting patterns while browsing in a shop. She decided that, if she wanted to have these designer clothes, the best way was to knit them herself. So that was it; she got the bug and has been hooked ever since. Aoife will sharing some of her wonderful work with us in a gallery exhibition in the coming weeks.  She is wearing one of her own pieces in the photo.

Xanadu Reading Challenge – February 2021

One of the lovely things about being an online arts centre is that Notes can Xanadu can feature writing and literature alongside other art forms.  With this in mind, we have created a reading challenge for 2021.  Each month there will be a theme, with several sub-categories, and the challenge is to read one or more books each month to fit the topic.  Feel free to add sub-categories, the only rule is that one book each month should be a new read.  The entire challenge can be downloaded in pdf format here.  We also have an Excel spreadsheet, thanks to Karin Hammarstrom, one of our participants, which you can also download, and use to track your progress.

Every month, we’ll introduce the theme and sub-categories in a post like this, and also give some reading suggestions.  Please leave a comment and tell us what you are reading, and whether you are enjoying it, or any other information that you would like to share with your fellow readers.

The theme for February is Spring Awakenings.

Sub-categories:

  • a book about nature
  • a coming of age story
  • a novel where the protagonists are animals

Reading suggestions:

I’m reading:

The Other Bennet Sister by Janice Hadlow.

 

 

Come back next month for our March suggestions, and don’t forget to leave a comment below to tell us how you got on in January!  Happy reading!

The discussion group for our January reads will be on Sunday, 7 February, at 4pm GMT. February’s will be on Sunday, 7 March, at 4 pm GMT.  If you would like to attend either of these, please email notesfromxanadu@hotmail.com if you haven’t already done so.

Stitch ‘n’ Bitch at Xanadu

In another first for us in 2021, we will be holding a Stitch ‘n’ Bitch on Thursday, 18 February, at 7.30 pm, in one of the rooms of Xanadu Online Theatre.  For those who haven’t heard the term before, a Stitch ‘n’ Bitch is when people get together to work on their various projects while having a natter and a bit of craic at the same time.

The Xanadu Stitch ‘n’ Bitch will be hosted by Aoife Flood, a highly experience knitter, who will be on-hand to answer any questions and offer help; beginners are welcome.  You don’t have to be knitting though: you can crochet, embroider, sew, or do any other craftwork you may have underway.

The event will be co-hosted by Notes From Xanadu Artistic Director Mary Tynan.  If you wish to attend, please register by emailing notesfromxanadu@hotmail.com.  See you there!

About our host: Aoife Flood’s knitting journey began on a trip to New Zealand in 2007, when she came across a book of designer knitting patterns while browsing in a shop. She decided that, if she wanted to have these designer clothes, the best way was to knit them herself. So that was it; she got the bug and has been hooked ever since. Aoife will sharing some of her wonderful work with us in a gallery exhibition in the coming weeks.  She is wearing one of her own pieces in the photo.

Xanadu Reading Challenge – January 2021

One of the lovely things about being an online arts centre is that Notes can Xanadu can feature writing and literature alongside other art forms.  With this in mind, we have created a reading challenge for 2021.  Each month there will be a theme, with several sub-categories, and the challenge is to read one or more books each month to fit the topic.  Feel free to add sub-categories, the only rule is that one book each month should be a new read.  The entire challenge can be downloaded in pdf format here.  We also have an Excel spreadsheet, thanks to Karin Hammarstrom, one of our participants, which you can also download, and use to track your progress.

Every month, we’ll introduce the theme and sub-categories in a post like this, and also give some reading suggestions.  Please leave a comment and tell us what you are reading, and whether you are enjoying it, or any other information that you would like to share with your fellow readers.

The theme for January is New Beginnings.

Sub-categories:

  • a book published in 2020 or 2021
  • a book given to you as a present (or bought with a book token) in the last couple of months
  • a book about a new hobby or interest
  • a book to do with a New Year’s resolution
  • a New Age book

Reading suggestions:

I’m reading:

The Lady of the Lake by Andrzej Sapkowski, received as a Christmas present in 2019.

Come back next month for our February suggestions, and don’t forget to leave a comment below to tell us how you got on in January!  Happy reading!

Update: it’s been suggested that we have a live, in-person discussion group once a month (online) to discuss what we’ve been reading – if that’s something you would be interested in, please comment below, or email notesfromxanadu@hotmail.com.

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.

 

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.

Ar Líne Le Chéile – Online Together

Before I was involved in an online arts centre, I was involved in an online school.

The Covid-19 has involved a lot of “online firsts” for me, many of which involves using new software for face-to-face online conversation. Ar Líne Le Chéile was the first of the firsts.

As soon as the schools in Ireland were shut, on Thursday 12 March, three friends (Notes from Xanadu contributors Philipa Farley and Simon Woodworth, and electronic engineer Gerard Heaney) and I decided to set up an online school. We wanted to be able to help children of friends and family with any isolation and loneliness that they might be feeling as a result of the crisis, and to give them the opportunity to explore new ideas with each other. The next day, Philipa gave Gerard and me an introduction to Microsoft Teams, and two days later I ran a trial lesson with my niece and nephew, to make sure I knew what I was doing, software-wise (with more than a decade’s experience I was fairly confident on the teaching front).

As it soon became clear that the regular schools would be sending work home for the children, I decided to have a different focus – theme-based, multi-disciplinary lessons designed to whet the student’s appetite for further exploration or activity, in whichever direction might take their interest. The first of these was a virtual visit to the British Museum to visit the Rosetta Stone. We also used a hieroglyphic typewriter, and made posters. After a meeting with parents on the Monday night, the school opened with this lesson on Wednesday, 18 March, with 11 pupils.

We settled into a regular routine after that with the themed lesson on Mondays and an associated feedback class on Fridays. On Wednesdays, I led a half-hour conversational Irish class, whilst Philipa taught Scratch programming on Thursday. Gerard gave us an evening Introduction to Electronics on the second week. During what would have been the school holidays, I led a weekly “keeping in touch” session on the two Thursdays.

Ar Líne Le Chéile has pupils from Sligo, Roscommon, Dublin, Cork and Galway. The school is free, and the teachers are giving their time as volunteers. I asked some of the children and parents for their thoughts for an earlier press release.

“It’s a great way to learn – you feel connected with other learners” said Jack Keaney, a 12-year-old student.

Charlotte Gask, mum of three of the students, had this to say:

“For me, I think the subjects are great. It lovely that it includes lots of ages and abilities, but mostly I love that it is scheduled. It gives us an anchor for our ‘school’ day.”

Her daughter, Georgie Longstaff, added:

“I like it, it’s more fun than school.”

Philipa’s two daughters, Ruth and Zoë, love that they can help demonstrate and make a game (while learning). They also like helping their mother to teach.

We are currently on a two-week break, and there was some thought that maybe the normal schools might be resuming before the end of that, but An Taoiseach Leo Varadkar’s announcement yesterday has made it clear that primary and secondary schools will not be reopening until September. Ar Líne Le Chéile, on the other hand, will be resuming on 11 May. Our students are the nicest bunch of children you could possibly hope to meet, and I am looking forward to seeing them all again on Monday week – nuair a bheidh muid ar líne le chéile arís (when we will be online together again).

Mary Tynan

More information about our school can be found at www.arlinelecheile.school.

Bringing it All Back Home – Online

Welcome to the relaunch of Notes from Xanadu. The next four days will witness the transformation of the site from online magazine to online arts centre.

Our homepage has always said Welcome Home. It’s been a place to come in, take your shoes off and relax with something to read, whether that be fiction, poetry, articles or reviews. We’ve never published a bad review – if we couldn’t find something good to say, then we wouldn’t say anything at all (but that never happened). We reviewed theatre, art, books, opera, film, eateries, and even, on one occassion, a karaoke booth. It was a home from home that gave you ideas about what to do outside the home.

And now many of us are confined to the home. On deciding to relaunch Notes From Xanadu at this point, it was decided to make it into much more than an internet magazine. I personally had a list of ideas for an arts centre, and decided to see how much of it could be implemented online – quite a lot, as it turns out. We have art, music, puppetry and of course writing, much of which explores the theme of staying at home or living online, as well as how the “new normal” is for the people who do go out to work.

For many people, the online way of life has been a reality long before Covid 19. I am thinking in particular of the chronic illness community, of which I am a member. Most of us are severely limited in how much time we can spend out and about; some are completely housebound; some are bedbound. The internet is a place for people to connect, share thoughts and ideas, and even study – for those who are well enough. This is particularly true for people who live alone. Other people may find themselves in the same boat by virtue of living in a remote location. We have always known how to do as much as possible online. The coronavirus has taught others the same skills. There is a lot of talk about the downside of the internet – people being addicted to their phones, not having real-life conversations, preferring the virtual world to the real world. But in reality the lines between the two are blurred.

And so here we are, bringing it all back home – online. Welcome to my world. Welcome to our world. Welcome to Xanadu.

Mary Tynan

Covid Economics

The grave situation we find ourselves in with regards to the coronavirus could actually also be an opportunity for positive change in a couple of ways. Here, I would like to address the first of these. It is quite obvious that the current, long-prevailing, market-based, economy-driven form of supply is not going to be able to meet the needs of the majority of people. We cannot continue to base the distribution of goods and services on the monetary wealth of those concerned. There will be very few winners and millions of losers.

An awful lot of people are going to lose their jobs. The first to be hit will be the hospitality and tourism industries, but this is a house of cards and each industry depends on supplying the needs of another. The money is going to continue the trend of recent years and move towards the bank accounts of a smaller and smaller group of people. But it doesn’t have to be this way.

What people have started to forget is that money is only useful if it’s used to buy things, whether goods or services – it’s not meant to be an end in itself, a goal to chase after, a way of keeping score, so that some people have so much that it would take them several lifetimes to spend. It’s not an entity, like a person or an animal – it doesn’t “need to be free.” It doesn’t actually exist in that sense. It’s a social construct.

How about if we start thinking about what we actually need, rather than how much money we need to buy it? If the global financial markets and stock exchanges crash, does that mean there are any less actual tangible resources in the world? We still have the same amount of land, food, houses, people, technology and expertise as we had the day before. So, what do we need?

At the very basic level we need food, shelter and healthcare. At the next level we have the things that bring living to life, such as education, entertainment, and communication. Then there is transport and travel. Finally, there are technologies to support all these things.

Is there any reason why all these things should be entirely dependent on a free-market economy? Starting from the expertise level, there are many, many examples of people who share this without payment. People teaching/tutoring/coaching in subjects they are experts in, whether within their own circle of friends and family, or within the wider community through charities such as adult literacy. People writing software that was shared for free (the early days of the internet were heavily dominated by this kind of people, as opposed to the advertising model that prevails now). People devoting their spare time to uploading books to Project Gutenberg, so that copyright-free works can be available free of charge world-wide. Entertainment is an obvious one: there are very few people who get into acting, music, writing fiction, etc, in order to get rich. The same can be said for the majority of people in the healthcare, education and other caring professions. Scientists are not in it for the money. Food: community gardens growing crops together, people volunteering their time in foodbanks and soup kitchens. Shelter: housing co-ops who build homes together in much the same way as communities such as the Amish have always done.

Money was supposed to be a tool, a medium of exchange, something to work in our service. Instead, we have ended up serving it. It is a game with an ever-decreasing amount of billionaire winners, and an ever-increasing number of destitute losers. It doesn’t make any sense. A situation like the current pandemic gives us a unique opportunity to re-evaluate and change this. Forget about accumulating wealth. Let money be our servant rather than the other way around.. Let’s use it for sharing resources. Let’s use it to build community. Let’s use it to make sure that everyone’s basic needs are met as an absolute minimum, and then let’s look at what else each of us can give – to each other.

Mary Tynan

Living Life with a Low-Capacity Battery

The other day, I was struggling, as many of us with chronic illness do, to explain myself to a friend. As usual, I had to give up. I can’t explain to her why it’s not perfectly easy for me to drive in and out of my nearest city (an hour’s drive each way, a quarter of which is on narrow, twisty rural roads) several times – or even once – a week. I’ve tried using the spoon theory, which makes a lot of sense to me, but I don’t seem to be so good at explaining it to others, and people often don’t want to or have the time to follow links and read articles that you send them.

I don’t claim to have invented the battery analogy – I’ve seen it many times before, particularly in connection with Myalgic Encephalomyelitis, the neurological disease I suffer from. But today, possibly because I just recently got a new laptop, with a much longer-lasting battery than its predecessor, I suddenly felt like I could use it to make a good explanation of what it’s like to have ME and other chronic illnesses – something that I and others could show to our friends and family members to help them understand.

Imagine two laptops, or smartphones, or tablets. Both have a battery. Each battery can only recharge once in a 24 period. One has a charge that lasts for 20 hours, the other 5 hours. This is a pwME (person with ME) versus a healthy person.

But it gets more complicated than that. There’s something called boom and bust. Imagine a pwME wants to go away for a weekend and be out of bed for 14 hours a day for three days – I’m planning to do this myself in a couple of weeks. (I will be attending a conference: having breakfast in the hotel with friends; going to talks during the day; and having dinner together in the evening.) But that means you need to find 27 extra energy hours somewhere.

Maybe you can use some of those backup battery packs? Maybe you can get 5 hours out of each of them. So, 6 of them should be more than enough, with a few extra hours for emergencies. But they all need to be recharged overnight (19 hours) also.

AND YOU ONLY HAVE ONE CHARGER!!!

So, in order to add those 27 extra hours to your weekend, you are going to have to spend 19 x 6 (114) extra hours in bed. This will obviously have to come out of the five hours a day when you are currently not resting. You do the maths! (I was being rhetorical there, I am actually going to do the maths. 🙂)

114 divided by 5 is almost 23. That’s how many days, at minimum, you will have to be bed bound to recover from your three days of activity. More than 3 weeks. And I am actually being very conservative with the figures here. You could easily add another week to that. And some activities will use up the batteries faster than others, making your energy debt even greater.

That’s how it works. And, although I am writing from my own experience as a pwME, it works the same way for many other chronic illnesses.

So next time you see a chronically ill person attending a party, going out for a day, or even having a weekend away, don’t think to yourself “She must be getting better/he can’t be that bad really/how come they can find the energy to do the things they really want to do?”

Instead, do the maths. Your chronically ill friend will still be paying the price days, weeks, or months afterwards – long after the party, event, or holiday has faded from your memory.

Mary Tynan

Picture of Nearly Empty Battery

Previously published in The Mighty and  Yahoo Lifestyle (as Teresa Ledwith) under the title The Best Analogy to Explain ‘Energy Debt’ With Chronic Illness.

New Century – New Aliens

Watching E4’s new 6-part drama The Aliens, I was strongly reminded of the 1989 American TV series Alien Nation, based on the 1988 film of the same name. Initially, I was struck by the similarities between the two programmes: in each an alien ship crash lands on earth, spilling it’s refugees, who then commence a new life on our planet. But, if art imitates life, then the differences between the two shows may be a mirror of how society’s views and attitudes have altered in two plus decades.

Aliens in SF are often used to represent the other: the foreigner, the outsider, the ‘not one of us.’ In both The Aliens and Alien Nation, the offworlders are literally refugees and immigrants so the metaphor is clearly drawn. So how do the respective shows reflect the social attitudes of their time and place of creation?

Alien NationIn 1989, the US was still seen as the land of opportunity – “Give me your tired, your poor, your huddled masses yearning to breathe free,” as the 19th Century poet Emma Lazarus famously said. In Alien Nation, the Tenctonese, or “newcomers” as they were called, were being gradually integrated into human society, although not without being on the receiving end of a fair amount of racism – they are referred to as ‘slags;’ given silly human names such as Albert Einstein; and often have the most menial of jobs. However, they live in human neighbourhoods; mix in human society; and work their way up the employment ladder – both the film and TV series feature a human/alien police partnership, for instance. The aliens are portrayed as victims rather than threats: tellingly, the ship that crashed was a slaver.

In contrast, E4’s spaceship was said to be a prison ship (according to the humans – the aliens have lost their memory of life before Earth) and the refugees are confined behind a wall, only allowed into the human side to work for a limited period each day, returning to Troy (their place of abode) before their curfew at 7pm each evening. They are portrayed as an evil influence, due to the fact that their hair, when smoked, has a narcotic effect on humans, and they take advantage of this by working as drug dealers and organising into criminal gangs.

Bearing in mind the media hysteria over immigration in Britain in the run up to the 2015 general election, with politicians of every stripe threatening to clamp down on it, it is obvious that The Aliens plays right into these fears and controversies. Although it suggests towards the end of the series that keeping them behind the wall is not a good idea, there is no indication that anything is going to change. Almost all of the alien characters are shown to be violent, no matter what side they are on.

Interestingly, in terms of actually living there, present day Britain is probably a better place for ethnic minorities than late eighties/early nineties LA, as evidenced, for instance, by the police beating of Rodney King and the subsequent riots; but in terms of official, media and public attitudes to immigration matters have certainly deteriorated badly in the past 25 years and The Aliens accurately reflects this zeitgeist.

Although both series concern refugees, Alien Nation overall seems to be more about racism in general, whereas The Aliens appears to relate more to immigration (the aliens don’t actually look any different than humans, for example).  However, the biggest difference, to my mind, is that of perspective: Alien Nation was optimistic and full of millennial hope that problems may be overcome; The Aliens offers nothing but despair for the future, which sadly reflects the feelings of many in Britain today at the dawning of the new century.

The Aliens

Owen Clinton 27 March 1950 – 18 January 2014

The death occurred on Saturday, 18 January 2014 in St Joseph’s Hospice, Hackney, of Owen Joseph Clinton (stage name Owen Nolan), late of Islington, North London.  A celebration of his life was held on 28 January 2014.  He is buried in Islington Cemetery.

I first met Owen in 2009, when we were cast together in a production of Julie Sibbons’ The Shoes at the London Irish Centre.  I was immediately struck by both his professionalism and his friendly, straightforward manner.  This initial impression blossomed into a friendship which I came to treasure over the time of our (too-brief) acquaintanceship.

Owen was born in Dublin and lived there until he was four years old, growing up in Manchester before moving to London, where he pursued a successful career in education.  He had several different roles in the field, including lecturer, head of department and even OFSTED inspector.  Education’s loss was entertainment’s gain, when, after taking early retirement, Owen trained as an actor at the Poor School in King’s Cross.  I had the privilege of playing his wife in his first professional production after leaving drama school (the aforementioned The Shoes with London Irish Theatre) and we worked together many times over the years (six months after playing my husband, he was playing my granddad).  Perhaps Owen’s most iconic role was as the definitive Frankie Flynn in Peter Hammond’s series of comedies about a likeable Dubliner, but Irish plays were far from the whole of his career.  His range was very wide –  encompassing opera, Shakespeare, and performances at the Old Vic in Inherit the Wind.  Owen’s take on Jeffrey Bernard is Unwell was a joy to watch, and you can read reviews of his performances in As You Like It and Poe: Macabre Resurrections elsewhere on this site.  Owen was also a talented musician and singer, performing Irish folk music with a couple of bands, most recently Chief O’Neill.

Owen’s impact was far greater than a professional one however.  He was a wonderful friend, family man and genuinely good human being.  Speaking for myself, I will remember the man who spent the night in hospital with me after I was hit by a car and drove me home the next morning; who came to see my plays and saw me safely home afterwards, and made me welcome in the home he shared with Mary, his partner of 15 years, and his sister Dora.  He looked after his mother in her final illness, and cared for his sister for much of his life.  Owen spent his last days in St Joseph’s Hospice in Hackney, where he was lovingly watched over by Mary and his brother Niall.  Predeceased by his brother Alan, Owen is mourned by his partner Mary, his sister Dora, his brothers Niall and Denis, his sisters-in-law Maggie and Alison, his niece Katherine and nephew Kevin, his cousins, family members and friends whose lives were touched by his.  In the words of his brother Niall, “the world is a better place now, because my brother lived in it.”

Ní bhfeicimid a leithéid arís ann.

Mary Tynan

To Resolve or Determine

Most people are familiar with the concept of New Year’s Resolutions, and the problems associated with sticking to them.  Before the smoking ban, it used to be common in night spots throughout the British Isles to see people smoking their “last cigarette” at 5 minutes to midnight, only to hear them say “I’ll start in the morning” less than an hour later.  Gym membership soars in January every year as does membership of slimming clubs, and I would imagine hypnotherapists see an upturn in business as well.

On the other hand, certain Buddhist sects have a practice of setting determinations for the year.  This is similar to goal setting in that it is a list of what you determine to achieve during the next twelve months.  This could be anything from passing an exam to having a baby and is not necessarily something you can achieve solely by your own efforts (although it can be).

However hard they may be to stick to though, resolutions are at least under your own control – as long as you have the necessary willpower.  You might not be able to ensure you drop two dress sizes, but you can stick to the diet; running every day is possible, but you won’t necessarily make the four-minute mile; and filling in job applications will certainly increase your chances of (but not guarantee) getting one, but chance is the operative word.  Determinations and goals are different.  Whilst God certainly helps those who help themselves, you can lead a horse to water but you can’t make him drink, and writing 5,000 words a day won’t necessarily get me my own comedy show.  Alternatively, the reverse is also true.  To spout another cliché: if you don’t know where you want to go, how can you work out how to get there?

So have I made resolutions or determinations for 2013?  Both.  Resolutions because I believe in myself, and determinations because I believe in the universe.  My resolutions include regular yoga, certain dietary modifications, and climbing Croagh Patrick.  And my determinations?  To make all my dreams come true.

The Law of Attraction versus “I’m not bothered!”

I remember one lunchtime in infant school being by the door to the playground where a dinner lady was on duty.  A classmate of mine offered her a sweet from a well-filled bag.  I asked if I could have one.  I was immediately told by the adult that “it’s rude to ask for things.  You should wait to be offered.”  My friend was too embarrassed to give me a sweet until we were around the corner and out of sight, when she happily did so without any further prompting.  Ironically, the reason I was in the corridor in the first place was that I was late out from lunch due to being punished for not eating my dessert (a common occurrence – cue a lifetime’s unhealthy relationship with food, but that’s another story).  The moral of the story?  Don’t ask for what you want, but take what you are given and be grateful for it.

I grew up believing that the only way to get something was not to really want it.  And I wasn’t the only one.  I was reminded of this the other day when reading Germaine Greer’s “The Whole Woman,” in which she says (on page 320): “The things you want don’t tend to turn up until you have given up looking for them.”  As we grow into adolescence and adulthood this belief develops into such behaviours as “not wearing out your welcome” “playing hard to get,” and “don’t appear desperate” – basically, pretending not to care.  This applies not only to our dealings with prospective romantic partners, but with friends, possible employers, or potential clients, in all sorts of situations ranging from discussing marriage or interviewing for your dream job to something as simple as a Saturday night out.  This can be a delicate balance for many people, for example, as an actor you are expected to promote yourself to casting directors, producers and directors, but at the same time must appear happy to be passed over or ignored, when everyone knows the truth is you would probably gnaw off your own leg for that one-line part on The Bill.

And often it really does seem that you are more likely to get things when you’re not looking for them:  you accept one job and are offered several others, you start a relationship and everyone seems interested in you, you spend months looking for the ideal flat or house without finding it, but as soon as you sign the lease on something less than ideal, the market seems to be flooded with perfect properties.  To paraphrase an old saying: “Make the gods laugh.  Tell them your plans.”

All this, I believe, goes somewhere to explaining my problem with implementing the Law of Attraction and its various related mental laws.  One of the basic tenets is “Think about what you want, not what you don’t want,” which seems to make sense, however it totally contradicts the theory of only getting what you want when you stop wanting it (for want of a better name, let’s call this the Law of “I’m not bothered.”)

And yet …  I consider myself a scientific person.  I have a BSc and have studied both mathematical logic and cosmology at third level.  I can program computers, and I read hard science fiction and books about physics for fun.  The Law of Attraction seems to make sense.  The Law of “I’m not bothered,” despite the apparent statistical evidence in its favour, doesn’t seem to have any logical theory behind it.  So why have I (so far) failed in applying the former?

I believe the answer lies in depth, and balance.  We need to appear not bothered to a certain extent: neediness is very unattractive and nobody wants to employ or go out with someone like that.  However, “appear” is the operative word here.  We should continue inside to want the job up until we haven’t got it, and then we should move on.  What we certainly shouldn’t do is take being “not bothered” to the extreme that so many of us do whereby we turn our back on our dreams, be it through being afraid to follow the career we always wanted or not having the courage to tell someone how we feel about them.

So not being bothered is a surface behaviour which can be useful socially if not taken to extremes.  Unfortunately so many of us from an early age internalise the message that we can’t have what we want (simply because we want it, it seems).  This is, in a sense, the very opposite of the law of attraction.  And in order to put the law of attraction into practice it also needs to be internalised, but when we try to do so, it comes up against the law of “I’m not bothered” and it comes down to a battle between the new and the deeply entrenched.

May the best law win!

Mary Tynan