Out for a Walk, by Colin Byford

We’re starting the final day of our birthday celebrations with our third photography feature.  It’s nice to have so many of the artists who took place in our launch weekend one year ago come back and join us for the birthday celebrations!  Colin has had two previous exhibitions with us, Water and Bugs.  He describes himself as follows: “I have had a 4 plus decade relationship with photography mostly as a high level amateur and a couple of years fully professional both in Ireland and back home in New Zealand.  My main commercial work to date has been in family and event photography.

I am fascinated by the technical aspects of photography. I learn the capabilities of the equipment and then push them. When combined with my computing background I can get some pleasing results. Sadly the artistic side is hard to teach but I am told I have a good eye.

I hope you enjoy my images. Prints of all these images are available to buy up to A3 size.  My website is www.byfocal.ie and I am on fotocommunity.com as Colin S Byford.”

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.

 

Don’t Change a Hair for Me

Here’s a cautionary, and true, romantic story.

Seán and Jenny had a wild romance: fiery, adventurous, hungry… especially hungry. They both loved fine food and tried to visit a nice restaurant at least once a week.

Giddy on passion and reckless zest, they developed an eating-out routine which combined their shared taste for theatrics with a soupçon of adrenalin. This involved Seán rising from his seat mid-dessert and sinking to one knee before Jenny, producing with a flourish the unmistakable, iconic cube of a ring box, as every eye in the place turned to watch this age-old human fairytale.

They were good actors, and invariably Jenny’s happy Oh-darling-I-do! would elicit a round of applause. More importantly, it also brought material benefits: free drinks, at least, and sometimes – you’d be surprised how often – a torn-up bill. Cakes were produced, waitresses sang songs. There are at least three upmarket bistros in Dublin where you can still see, pinned up behind the bar, a yellowing Polaroid of the allegedly betrothed, toasting their fictitious future with champagne donated by the beaming manager who’s embracing them both.

Even if their romantic hamming hadn’t moved the boss, some well-to-do fellow patron might pull out his credit card, spurred to generosity by this sentimental reminder of the beauty and optimism of l’amour even in our uncaring, dog-eat-dog age. The world will always welcome lovers, after all.

On holidays the pair fished for every conceivable freebie by claiming to be on honeymoon. They even brought props to support their Bonnie-and-Clyde sham: wedding cards, a bridal veil, leftover confetti. Happy, daring, aphrodisiac times ensued.

But of course they were playing with fire. Not just the fire of potential discovery, but the fire that smoulders, usually undetected, in the hearts of the young and infatuated. The lie oft-repeated became an internalised truth. Jenny made certain assumptions, subconscious perhaps but no less important for that. Seán meanwhile remained blissfully non-committal as the years whizzed by and the pretend engagements mounted.

It could only end one way. After five years they parted. Badly.

Five more years passed, years of hard graft, hard knocks. Lessons were learned on both sides. And finally there was a reunion. In a different restaurant, surrounded by another crowd of strangers, peace was made. Dessert was ordered. And Seán produced another little jewellery box – this time for real.

Tears in her eyes, Jenny rose to her feet. “Too late, darling, too late,” was all she whispered as she walked away. There was no applause. Seán quickly settled the bill, dozens of sympathetic watchers pretending not to see, and left.

George Wells

Hungry for Love, by Breda Hyland

Breda is a writer from the West of Ireland.  She tells us, “I write for a pastime, about ordinary, everyday things, but I like to throw my imagination to the wind and sometimes I laugh at what comes into my mind! I write best in my head, when I’m driving through the fields, out in the open air. It’s harder to come home and put it down on paper, but I’m usually happy with the end result.”

Please note that this poem contains adult themes.

You drove me to Galway
in your Ford Granada,
to buy me a dress, you said,
for the local Macra social.

At 62 you were a devoted member,
I was a novice at 29.
Your car tax was out of date so you
hid it in a laneway nearby.

I stepped out in deep puddles
that soaked my stilettoed feet.
You whisked me past Moons in case
I spotted the designer dress in their window.

Anthony Ryan’s winter sale –
The best in the west, you said.
You bought your last suit there
twelve years ago, maybe more.

I tried on and hinted disapproval
at the colour and the style,
You couldn’t wait to get your hands on it
reduced to half price.

No time for food, you said,
you had to check the Charolais cow
and the new-born calf –
a valuable pedigree heifer.

Next year at the Claremorris show
she’d make the best continental.
You’d win the cup, not to mention the
money and the photo in the Western

and I’d get my hair done,
that place in the corner, you said,
where your mother goes,
she gives good discount on a Friday.

You had your way as usual.
We ate the bacon and cabbage,
cooked by your mother,
when we got home

And you the lucky girl, she said,
you’ll never want for anything.
Prosperous farmer, fine house
I puked her words (and the dinner) down the sink.

Later that night at the Macra social,
like the pedigree in the ring,
you paraded me around the ballroom,
proud of the female trophy on your arm.

And they all gazed and whispered.
And she an only child, they said.
And her land adjoining his, they said.
And wasn’t he always after young ones anyhow.

On the way home, another laneway,
the back seat covered in dog hairs.
My brown hair fell into the half open bag
of Maverick (or was it Frisky).

The plug of the calf dehorner
dug into my lumbar vertebrae.
Thank god it was round,
the damage superficial

And you held me like the calf
in the crush, about to be castrated,
never going to get away
and neither was I.

Your arthritic limbs caused
awkward manoeuvres in the dark.
You moaned and groaned agony and ecstasy.
Was the pleasure really worth the pain?

My dress was full length and fitted,
you cursed because it was waisted
you never wasted anything in your life before,
and I thanked god it was over

And my mind drifted back
to the dress in the window in Moons,
glad I didn’t fall for it after all –
I’m almost sure it was short and flared.

Breda Hyland

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.