Acromegaly Awareness Day

1st of November is Acromegaly Awareness Day and encouraged by our wonderful Acromegaly Community leader Jill Sisco, I decided to write a post on being a patient with acromegaly.

For years, I have experienced horrendous headaches and sinus infections, extreme fatigue and loss of sight. I was a busy mother, auntie, wife and daughter with a big house, a big garden and a full time job that also involved travel. My GP dismissed all my complaints, and all he ever prescribed was a holiday. At one point, I visited a friend whose mother was a neurologist. She looked at me and said I should get an X Ray of the sella turcica. I paid no attention – doctors only see diseases in people, and at that point I was feeling just fine. And then, a couple of years later, when the headaches became more frequent and the ENT saw me every month and prescribed yet another antibiotic, a cousin of my husband, a doctor living abroad who had never met me, came for lunch. 5 minutes after he left our house, he rang my sister-in-law in another city, recommending that I get tested for acromegaly. At this point, I was desperate for a diagnosis and a cure. When the GP yet again laughed in my face, I went to see a neurologist. She sent me for a CT scan (MRI was not available at the time), and the radiologist, whose son was a friend of my kids, looked really worried when she told me there was something there, in the sphenoid sinus, but more investigations would be needed. All I could think of was a malignant tumour. I knew it was there, and it was good to get a confirmation.

At this point, I was living in Romania and teaching in a private university. I had just received a postdoctoral research grant from ERCIM and I was going to join Fraunhofer IESE in Kaiserslautern, Germany on September 1st 2003. Working in research was a dream I had all my life. Nobody had any idea of a diagnosis in Romania, and much less of a treatment, so I decided to go to Germany anyhow. I would pursue the fellowship and then come home to die.

All seemed great in Germany until I got a really bad sinus infection, an eye looked like it was going to pop out of my head, and I went to the ER in the local hospital. I was sent to a university hospital nearby, where my sinus infection was treated with one antibiotic after another. I got an MRI and a biopsy of the mass in the sphenoid sinus, and the diagnosis was acromegaly. The neurosurgeon was in a hurry to excise it, but the brilliant endocrinologist in charge of my case prescribed a 3-month treatment that managed to shrink my adenoma to half of its initial size, making surgery possible. The doctors who treated me reckoned that the adenoma had grown there for 10-15 years prior to surgery. A pituitary adenoma is not a brain tumour, and it is usually benign. But it can wrap itself around arteries and the optical nerve, which makes surgery dangerous and difficult. My adenoma was 2.5 cm in diameter – which is considered a macro-adenoma. It had grown through the bone into my sphenoid sinus and it had filled it – hence my horrible headaches.

I had surgery at the Grosshadern Clinic in Munich on the 9th of March 2004. For a while, my blood tests approached normal values. But then the symptoms reoccured, although there was no new adenoma. I moved to Ireland in 2005 and it took 4 years to find a consultant who understood what was going on. He told me that I was in denial, and I had never been cured, and I needed medication to control my acromegaly. I am on a drug called Sandostatin LAR monthly since May 2009, and luckily I can lead a normal life.

The most important thing in relation to rare diseases is early diagnosis. TV series such as House, Grey’s Anatomy and ER have done a great job at increasing awareness about rare diseases. Grey’s Anatomy even had an episode with an acromegalic patient.

I am forever grateful to the Acromegaly Community leader, Jill Sisco, who works tirelessly with specialists and Pharma companies to increase communication and to make sure the patients’ voices are heard. Due to her, we get invited to conferences and seminars where the latest developments in diagnosis and treatment are discussed.

I am one of the lucky ones – medication works for me, and there was no reoccurrence of the adenoma. Having the support of an international community of patients and families makes a huge difference. I have a brilliant consultant endocrinologist looking after me, I was invited to take part in several studies and Ireland has an acromegaly patient register. For a couple of years, I have curated a resource titled Acromegaly News on Scoop.it. Nowadays I collect resources on diigo.

I want to leave you with an excellent explanatory video made by a fellow patient based in the UK, Dan Jeffrey. Dan published a memoir on his experience of living not with one, but with two rare conditions.

Dan Jeffrey –Me, Myself & Eye blog

And if you are interested in the experience of other patients with acromegaly, there’s another 2011 anthology I can recommend: Alone in My Universe.

November 01 2021 | Limerick | No Comments »

Going back to normal…

After spending so much time at home between March 2020 and now – 18 months, they say, I’m afraid I can’t do “normal” anymore. We went to the market this morning.

I spotted a few acquaintances – normally I would have made sure to say hello, but I found myself paralysed and wondering what should I do. I wore my mask in all the crowded areas, noticing with terror that a lot of merchants had given up their face coverings.

We split our tasks, to minimise the amount of time spent in shops. And when we decided to sit down for a cuppa in an outdoors cafe, I chose the most isolated and remote table, away from the awning.

I carry a small bottle of disinfectant in my bag at all times. I am weary of any kind of approach, even when it comes to cute children or dogs. Will sociality ever come back to me?

I was watching people going about their business, and noticed how everybody’s dressed for the home, in track suits and runners. I’m wearing jeans and a T-shirt myself – I couldn’t be bothered to make more effort. In the beginning, I kept on applying lipstick when going out, and smearing it all on the inside of the mask. I’ve stopped a long time ago. I haven’t even looked at my high heel shoes since this started. And last time when I made an effort to dress up was in spring when I finally got an appointment for a hair cut.

Is this the new normal?!

We got so used to walking “the three bridges” walk, or the Canal Bank, or visiting the Barrington’s Pier. or quiet neighbourhoods , that the city centre appears too crowded and noisy, with all the news on “relaxation“.

I can’t even imagine going to concerts, restaurants and cinemas anytime soon. I am languishing. I think I’ve turned into a recluse, and it will take a lot of work and reassurance to go back to any kind of “normal” from where I am today.

October 28 2021 | Limerick | No Comments »

Finding my lace tribe

While meet-ups and events with local lacemakers have all been cancelled, the last 20 months have been extremely rich in online events, that I was able to attend from my own bedroom, sometimes with some crochet or knitting work at hand.

I took a contemporary lace design workshop titled Needle Lace Narratives with Maggie Hensel-Brown at DFZ 2021 and I have been completely fascinated by her art since. Here’s an article about her work and she’s giving a talk soon as part of the CDMC series of talks on textiles soon.

I have been attending a Clones Lace class offered by the Lace Museum lately, and our teacher Maire Treanor and the Lace Museum organised a special talk on Orvieto lace last night. Orvieto is a small city in Umbria, and Orvieto lace has a very interesting history, being heavily influenced by Irish crochet lace.

Instrumental in the revival and preservation of Orvieto lace was the great Maria Vittoria Ovidi Pazzaglia, who taught Orvieto lace and published several books on lace. This is an interview with her that I managed to trace down and read via Google Translate.

Source: http://www.orvietonews.it/

Unfortunately, Maria Vittoria passed away last year, so we had her daughter Natalia Pazzaglia, and a former student, Alessandra talking to us, a group of Clones lacemakers and our teacher. Maria Vittoria and Alessandra had visited Clones a couple of years back.

The time spent with the two ladies was a delight. The meeting had no set agenda, so we were free to ask questions and satisfy our curiosity. Alessandra did not speak English, so Natalia played the role of interpreter, and also spoke with great emotion about her mother and her work.

Orvieto lace has very distinctive 3D characteristics, and to find out how that effect is obtained was a real surprise. The lacemakers use a “chiave a brugola” (which we identified as an Allen key with the help of Google Translate) that they heat in fire, to press their lace from behind and create the 3D effect. In the old time, they used oversized gate keys. The conversation also revolved around materials (helping me to discover the source of Presencia thread), themes and shapes. We were showed beautiful earrings and other ornaments made in Orvieto lace.

via Bolsenaricama.it

A lace school is functioning nowadays in the nearby city of Bolsena, and is organising an exhibition every second year.

This is a video introducing Ars Wietana or Orvieto lace (in English).

It also helped a lot when Natalia mentioned other types of lace made in Italy, such as sfilato siciliano, punto taglio merletto and pizzo macrame (not sure of my spelling!).

Recently, an Italian friend who visited Isola Maggiore also told me about the local lace inspired by the Irish crochet lace tradition.

October 14 2021 | Limerick | No Comments »

Learning more about Lace

My interest in lace started with the Amazing Lace project initiated by the Limerick Museum. In March 2014, I was invited to join a team led by city archivist Jacqui Hayes and Dr. Matthew Potter, working on an exhibition and a book dedicated to the history of Limerick lace. I was incredibly fortunate to have our master in Interactive Media student Suzanna Melin joining me on this journey. From March till December, we participated in team meetings and worked as part of a team on an interactive installation that was part of the exhibition launched in December 2014.

This is when I decided I wanted to learn how to make this delicate lace. I attended an initiation workshop in Limerick lace in 2014, and then another one in 2015. In 2015, I joined Toni O’Malley’s class for an autumn term in the Hunt Museum and managed to acquire the basics.

When COVID hit, we had planned a series of lace making sessions in the fabulous Captain’s Room in the Hunt Museum. The idea was to allow visitors to see that Limerick lace is alive and thriving, and to be able to answer their questions. Only the first session happened, in February 2020. We attempted a second one online, in May 2020. But the interest was limited, and so I almost completely lost touch with the other lace makers.

This made me turn my attention to online events, and in August 2020 I joined IOLI, The International Organisation of Lace.IOLI offers an online lace talk each month, and is organising a full online Virtual Convention in July.

On February 21st, I had the chance to watch a fascinating lecture by Michael Yonan on Empress Maria Theresa’s Lace Dress.

You can read Michael Yonan’s article on the topic here.

A piece of the dress (possibly a sleeve) is in the collection of the The Metropolitan Museum of Art, New York.

And a few days later, the amazing Fashion and Lace Museum in Brussels offered an online talk by Caroline Esgain on the history of the Brussels Lace (French only) – where the story of this incredible dress surfaced again!

March 18 2021 | Limerick | No Comments »

Going against the stream

A couple of weeks back, at the end of January, I attended a talk by Audrey Girouard, organised by Andrew Kun together with a number of others.

That’s the reason I am still on social media: I find out about events from all over the world that I can afford to attend. Yes, I suffer from Zoom fatigue like everybody else, but whenever I get the chance to listen to speakers like Audrey that I admire and never had the chance to listen to in real life, I do take it. That’s what my post title, “going against the stream” refers to.

That’s where I heard for the first time about a new ideation method for wearables called the Crazy Eights. I found the method interesting, and I decided to use it with my class in the Interaction Design seminar I run with the master in User and Experience Design class this semester. So two weeks later, when I was preparing the seminar, I wondered how to mock-up the cards for an online exercise. All I needed was to Google “Crazy Eights Wearable”, and I came across a website called Wearable Crazy Eights that did exact this: generated combinations!

I had to send each of my students a small kit by mail, as my intention was to get our hands dirty and see everybody using a needle with conductive thread. And I used the Wearable Crazy Eights method in the very first session, to get people thinking and trigger their imagination. They worked in pairs, so there were eight ideas per group – 4 each. This is what came out:

My favourites were the belt for cooking playfully and the wig for watching gayly! And what made it even better, Mural already had a template for the Crazy Eights!

A week later, I had the chance to listen to Lee Jones presentation of the paper at TEI:

This made me think gratefully of all the events I managed to attend because they are online. I’ve never attended TEI before, although I always wanted to!

February 21 2021 | Limerick | No Comments »

Getting some perspective…

January is not my favourite time of the year. I feel like hiding under a rock and hibernating. Once it gets dark, the only place I like being in is my bed. With a lot of cosy lamps on.

My energy levels are low and my usual mood is ‘grumpy’. On top of this, I haven’t been well lately. So after 3 days of 38.2 degrees C fever in the evenings and some more fatigue than usual, I asked my GP to be referred for a COVID test. I phoned the GP at 10am, I got my appointment at 10:35, went for the test at 12:30pm and had the results in less than 24h. In the mean time, I self isolated in my room, got my own cutlery, mug and plate and wore a mask during the two trips I took downstairs. I rang Ray a couple of times, to avoid shouting through the walls. When the result came back negative, it was such a joy! We went downstairs and had lunch together. We had only skipped one lunch and one dinner together, but it felt like 100 years!

And today I had to go to the hospital for a pre-op assessment. It sounded a bit weird that the surgeon I met last week decided to have my tests done now when we discussed gallbladder removal through keyhole surgery for the end of April. Anyhow, I thought there would be no harm to remind someone about the stent that still lives in my bile duct and couldn’t be removed as planned because all non-urgent procedures are cancelled.

I have a fat big folder in the hospital, and because all the recent developments, I got a lot of questions and attention. Two nurses, an intern, an anaesthesiologist and a registrar took turns questioning and examining me. I was supposed to be there for about two hours, but in the end it became more like five hours, with the perspective that I would go on the drip to be given an antibiotic to treat a gallbladder infection, followed by an emergency open cholecystectomy. I was extremely lucky that in the end all my blood tests were close to normal and no signs of infection were found. What I feel is probably just discomfort from having the stent in there. I can’t explain how grateful I felt for being allowed to go home! I had a whole scenario in mind and a long list of all the things I wouldn’t have been able to do if I got surgery.

And then a story I read yesterday came to mind, told by a Romanian actress that I admire very much. Oana Pellea talks about her mother’s teachings on how to overcome daily challenges: ” When you are discontent or you think you have problems…when you get home, just put your right hand at the back and try to do everything with the left one: turn on the gas, wash yourself, take things out of the fridge…for no more than 10 minutes. And after 10 minutes, bring your right hand in front of you and look at it with your eyes of flesh. And you’ll see the miracle! You’ll realise what it means to have both hands. Or both feet… And then ask yourself: how important were the problems you thought you had 10 minutes before?

By the time I got home, I felt like I had won the lottery. The blue hyacinth in my bedroom had just opened – I could smell it the very moment I opened the door! Ray cooked dinner and I dealt with my emails. Then we had dinner together. Tried out things on our new Internet radio. And a beep on my phone reminded me about the Limerick Garden Festival webinar – The Spring Organic Garden with Jim McNamara.

Limerick Garden Festival webinar: Carmen Cronin in conversation with Jim McNamara
Recording of the webinar available here

The webinar was a breath of fresh air: just hearing people talking about plants and growing makes me happy! And Jim is such a fantastic speaker – he smiles and jokes and turns words into joy and images, and never forgets to be humble! The plans for the spring garden came to life in his imagination, and we could all see with our mind’s eyes what he meant! We owe so much to Carmen Cronin for making these events happen, even during a pandemic! And thinking back to the Ennis and Limerick garden festival several editions, I can almost see the plants in my garden that I brought home from these events!

So all is well in my world! There will be little seeds planted this weekend, and less thoughts about what could be wrong with me, and more plans for the spring garden. After all, there’s a lot of work to be done!

January 21 2021 | Limerick | 2 Comments »

My superpower

This morning there was a guest on the radio talking about jobs for the garden this week. The sun was shining, so when it came to go for a walk during our lunch break, I opted out and grabbed the secateurs instead. I have a difficult task planned for this spring – replacing two rotting wooden boxes at the back of the garden with a proper greenhouse – and I have already booked the greenhouse installation for February.

The biggest achievement of 2020 was creating a Hügelkultur in our urban garden, that we named Mound Juliette (Hügel means mound, and it was a word play on Mount Juliet, a beautiful place near Kilkenny we spent a weekend at a couple of years back). The mound incorporated the leftovers of an old pergola, and a lot of branches and leaves resulted from the spring clean, plus our own compost. During the first lockdown, I tried very hard to buy a shredder, but to no avail. And one day, Google brought up an add about tool hire, and we hired one for 24h from the nearby HSS branch. We arranged everything online, and the shredder got delivered to our door and collected the next day.

There’s a lot growing on our Mound Juliette this January – from purple sprouting broccoli to red kale, parsley, chives and garlic. And they all survived the frost unharmed.

So I went out and cut a bush that will need to go away to make place for the greenhouse, moved a blackcurrant into a big pot, and distributed a few buckets of compost around the garden. The sun was shining, the robins and starlings kept on popping by for food, and suddenly I felt that this was the best medication for me. Pruning is my spring superpower – it gives me a sense of atonement, helps me observe and imagine how each plant will grow and occupy space throughout the season. And it strikes me how much I resemble my father, who was an avid gardener, but always crammed too many plants in the limited space, because he liked them all so much!

And then I turned around and found this daring snowdrop. It must have been out last week, when it snowed and we had a night with -4 C. But nobody had time to see it and admire its bravery! Thank you, little snowdrop. You made my day!

January 13 2021 | Limerick | No Comments »

Not such a good start…

Today it snowed. It’s very likely this is the only day of the year we’ll see snow in Limerick, and I had to see it in a photo taken by Ray from my bedroom window. That’s because I am not at home – I am back in hospital.

Continued 8 January 2021…

As I mentioned before, I had a long overdue surgery in November to remove an overactive parathyroid. So I had scheduled an appointment with my GP for blood tests on Monday 4th of January to check on the values post surgery. Routine tests, if we are to ignore the rebellious gallbladder that sent me to A&E before Christmas. On Monday evening I got a phone call that my potassium was out of whack, that it was probably a mistake, and I will have to repeat the test on Tuesday morning. Got the test done and forgot about it, until my GP rang at 7:30pm to tell me to pack and go to hospital, as it would not be safe to spend the night at home. It was a huge shock, and I needed a few moments to get used to the idea. I dreaded the hospital and I already knew I would have to go back to have the gallbladder stent taken out, but I didn’t expect to need another A&E trip. This time I arrived early, around 8:40pm. I waited for triage for more than 2h, and then another hour to get to a ward. I felt no pain, just a slight heart flutter. When I finally got to speak to a nurse and a doctor on the ward, I got transferred to the Critical Care unit, as they were worried about my body’s potential reaction to the electrolytes they were going to use to attempt to bring down my potassium. I had no clue where this new problem could have come from. I got connected to an ECG monitor, put on not one, but two IV drips, one in each arm, and had blood samples taken every 4h. I barely closed an eye – every time I fell asleep, one or another of the monitors in the room started beeping. The unit was really busy, staff coming and going, changing PPE for entering each and every cubicle. In the morning, a doctor came to talk to me saying they managed to lower potassium, but my heart beats were far too frequent and something had to be done about it.

They planned to move me to Acute Cardiac Care when a bed became available, which only happened that evening. I was looked after by an amazing team of nurses and doctors, who explained the procedures to me and did everything they could to put me at ease.

The next day, I was first sent for a thorough TTE upstairs. The team had warned me that they will have to check for possible blood clots through a procedure called TSE and only afterwards, if no clots were discovered, I would go through a cardioversion – basically a heart reboot using an electric shock. After 1pm, just as I was losing hope anything would get done, the team arrived to my ward and set everything up for both TSE and cardioversion. I was sedated, and I only remember feeling the endoscope going in and not finding its way. The nurse told me afterwards that they had to take it out and try again, but I don’t remember anything else. I woke up about two hours later, and the nurse told me all was well and the cardioversion succeeded to put my heart back into its proper rhythm and that I’ll be sent home that evening, which was a huge relief.

The following night at home, I woke up around 4am with a sore throat, wondering if I caught a bug in the hospital, and an itchy area on the right side of my chest, that was slightly red. Only in the morning I realised that this was all to be expected – the throat soreness was from the endoscope, and the itch – a slight burn from the defibrillator pad. Sweet sedation amnesia! So glad it worked out and I am back in action, although a bit tired!

January 07 2021 | Limerick | No Comments »

Moving on to 2021

2020 was a year like no other. It affected us all in ways that are maybe not yet evident. I read this morning in a mail by AFP that the Kiwis have been saying: “We’re all in the same storm, but none of us are in the same boat.”

For me, it was time to stop and think. I had been travelling too much. I had been doing too many things. I still remember the first week of the spring lockdown when I had the revelation that I managed to have lunch three days in a row. This working from home did me a lot of good. Moving my teaching online was not a problem, as I had the skills and I had the tools. Also, I knew my students quite well by then and continuing online was not a problem. A few adjustments, a few glitches – but it worked. And our 2019-2020 cohort of master students were an absolute pleasure to work with!

I spent my free time gardening – and it was rewarding and uplifting. We built a Huegelkultur in our tiny urban garden that we named Mound Juliette. We made improvements to our home – like many others who found themselves spending a lot more time at home. We went for walks in new and old places. Life went on. We even managed a one week holiday in Bantry, with long walks and sea swims.

Online conferences became the norm. In some ways, this gave me the chance to attend events I could have never dreamt of. In other ways, not getting to Siegen for ECSCW 2020 was a major disappointment, although the organising team did absolute wonders with handling the challenges.

During the summer, I joined a Facebook group organising online writing retreats for women in academia and became one of the regular hosts. In many ways, this peer support group became my saving grace, providing me with a strict temporal structure and a bit of chatter with an international group of colleagues.

A stray cat had her two kittens in our garden and we suddenly became cat people, going out of our way to accommodate the clan.

And there was a bit of canoeing on the Shannon – mostly from Worl’s End to O’Brien Bridge thanks to Munster Kayak Adventures.

The autumn brought a delayed start for the academic year. And then I was faced with the challenge of teaching one module to 285 students from first, second and third year and a handful of programmes ranging from humanities to computer science. The logistics were complicated enough, but what made it really difficult was the relentless coming and going of students until the end of week 5. But we survived, me and my two excellent teaching assistants. It wasn’t easy – everything took 3 times longer than usual, and everything required yet another Zoom or MS Teams meeting.

I was supposed to go to Scotland in April to attend Rowena Murray’s Retreat Facilitators’ training course and the course had to be cancelled. Fortunately, Rowena decided to to offer it online this autumn and I was able to attend. I am planning to organise an online writing retreat as soon as I can in 2021.

I had to have surgery to remove a parathyroid gland gone rogue at the end of November. I lived with the signs for more than 8 years, but things had gone really wrong this year. And then, just as I was recovering, a gallbladder stone decided to take a trip down my bile duct and got stuck there, sending me to A&E at 3am one Thursday night. The 6 days I spent in hospital were probably the worst part of 2020 for me.

I missed my children at Christmas – that’s the time of the year when they usually come to Ireland. And we only got glimpses of Ray’s grandchildren!

Not an easy year, by any means, but I can say we were fortunate enough to come out of 2020 the way we did.

Moving on to 2021, I am a bit slow in setting goals. My biggest wish is that we can get out of this terrible situation we are in and build a better life for us and this planet.

January 03 2021 | Limerick | No Comments »

Looking back at 2018

I had a very full year – a lot of things happened in 2018!  I was busy – sometimes madly busy, but in a way I was better equipped to deal with the madness than in previous years. Inspired by Ton, I started writing similar blog posts three years ago, but never managed to finish and publish any of them. They are still there in draft form.

I keep on telling my students that there’s never enough time, and one has to make time for the things that are important to them. For 2019, I am planning to take a leaf of my own book, do less things and make more time for reflection. As part of this, I plan to blog more and spend less time on Facebook. It is a valuable source of professional news and observation material for me, but I reckon I could compartimentalise and organise my usage better. And write more.

So, what did 2018 bring me?

Project-wise:

  • +CityxChange, a large scale EU project I was involved in at the proposal stage, got funded, and we had our kick-off meeting in November in Trondheim, Norway. I am looking forward to working on the community engagement aspects together with our partners!

20181108_114455

 

Two other projects started as community initiatives and are slowly taking a life of their own:

  • Friends of Lace, a collaboration between Limerick Museum and a group of local lacemakers that started in 2017, had an excellent year in 2018. We created a new website, a booklet and a Limerick lace making kit for beginners, and we are currently working on a digital catalogue. Our Amazing Lace Symposium brought together over 50 lace makers, researchers and artists, and included two thought-provoking keynotes by Fiona Harrington and Sara Robertson.
  • Collaborative Housing Limerick, that started as a grassroots research group in May this year, is advancing toward becoming an initiative group. Networking with cohousing groups from all around Ireland following the Housing Ourselves annual conference in Cloughjordan, a visit to the Blahojen Cohousing Association in Aarhus, Denmark, a lot of readings and online observation equipped us well for taking the next steps.

Event organisation:

  • the Design Research Conference 2018 in Limerick in June. 600 attendees. Fabulous experience. Great speakers. I had the chance to be part of the organising committee. The worst complaint we got was about the weather- too hot – for a change! My personal highlights were the picnics on the lawn and the sessions we decided to move outdoors!
  • This year we hosted the Irish HCI annual conference in Limerick. Usually it is very difficult to convince people to attend events anywhere else than in Dublin, but based on the feedback we got, the event, which brought together over 60 HCI academics, researchers and students, was enjoyed by all.

Irish HCI conference 2018

A number of publications I worked on for a long time finally came out. Check out this open access  Springer book where I have a chapter on the Limerick Local Heroes events and another one with my colleagues on the Woodquay Project initiated and led by the Adaptive Governance Lab.

I had some articles rejected for ‘interesting’ reasons (too long, nothing new here, not enough papers received for publication) and will need more work.   Looking back, I am now publishing things I worked on 3-4 years ago, and sometimes the energy is not there anymore. The funding lottery has put new things on my plate, I’ve moved to new topics, and it’s a bit like having to live in the present and in the past alternatively.

I travelled a lot for work this year and this is something I want to become more selective about. Invited talks and conferences are tempting, but do not leave much time for in-depth reflection, reading and creativity. I went to PDC in Belgium, and it was one of the best conferences I ever attended. The community is alive and creative, it creates space for criticism and growth, and I came back with a lot of ideas and new contacts. And the organising committee people were really amazing – the venues, the food, the side events – a fantastic experience!

I also attended a couple of other events, not strictly academic, that brought together various mixes of people: Open Coop 2018, ThingsCon, ICT2018.

I didn’t manage to fit in a proper holiday this year. Nevertheless, attending Elmine and Ton’s Smart Stuff That Matters unconference in Amersfoort in September really helped recharging my batteries! This photo reminds me of the excitement I felt  co-designing and building a butler robot who was supposed to befriend all the people in that lovely neighbourhood, as a birthday present for Elmine!  Of course our robot came under Elmine’s unforgiving huge hammer in the end, but it was fun to build!  I came back filled with thoughts and dreams and joy, having re-connected with old friends and having made new ones, with the best intentions to blog about what happened there…I have a draft somewhere!

IMG_4303

And there was also the KOBA School of Wicked Fabrics in Berlin in August – my first full week dedicated to working with eTextiles, after lurking at several e-Stitches London meet-ups! We now have an e-Stitches Limerick group in Fab lab Limerick, and there is growing interest locally. Three of us participated online in the Textile Academy bootcamp Milan in May, and got a glimpse into the requirements for creating a Fabricademy node in Limerick in the future.

Koba

The last week of the year was a no-work period, as my grown-up kids managed to finally visit at the same time, and we took advantage of the mild weather to take trips to Connemara, Dingle and also closer to home. And there was time spent with family, new and old friends, cooking and eating and being merry!

Back at my desk now, as those exam papers won’t correct themselves!

Finally, borrowing Neil Gaiman’s words, a wish for all of you:

“May your coming year be filled with magic and dreams and good madness!”

December 30 2018 | blogging | No Comments »

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