Meet Tracy Fahey from Limerick

Tracy FaheyTracy Fahey and I met briefly in Limerick in the days when there was a young and fun diabetes support group up and running there. Tracy is the head of the Dept of Fine Art & Postgrad Studies at Limerick School of Art & Design and the longest serving judge on the Junk Kouture Competition panel.

We really didn't get a chance to get to know each other but she emailed me a couple of weeks ago about a project that she is working on in the area of expressive art workshops for adults with chronic illnesses. Unfortunately, it looks like we are unable to include the workshops in this year's Thriveabetes but I am keeping an open mind. Because you never know what will happen in the future!

I interviewed Tracy via email and here is that interview.

 

GF; Tracy, how long have you lived with type 1 diabetes?

TF: I've been a Type 1 for five and a half years now, since my thirties. Unfortunately I'm classified as a late-onset T1 (LADA or Type 1.5), and as many others in my situation I was initially misdiagnosed as potentially pre-Type 2, though I was addressing this with sensible diet and exercise, but instead my pancreas failed and I ended up with a severe case of diabetic ketoacidosis, which resulted in a coma and a stay in ICU. Not the ideal scenario for receiving a diagnosis! A diagnosis of a chronic illness is always a shock, especially if you've been lucky enough to have been robustly healthy beforehand. Losing your able-bodied privilege is hard, having to plan and manage and calculate endlessly is hard, but the hardest part of all initially is feeling a loss of identity and a sense of mourning for your lost, spontaneous self.

Having said that, the year or so post-diagnosis was the toughest part. After the shock, rage, grief and bargaining comes acceptance, and the possibility of thriving. What being a person with Type 1 has taught me more than anything, is that time is precious and life is to be lived to the full. There's nothing like a brush with mortality to waken you up. In the last five years I've travelled as far as New Zealand, started and finished a PhD, written a book, set up a research centre, started a fiction writing career and published fourteen stories, and found a whole new research interest stemming from my current identity as a person with diabetes - that of medical humanities. On bad days (like we all get) I will still get resentful and angry at the unending nature of diabetic management, but at those times I try to balance that with remembering the new, clearer perspective on life it has brought me. It's all part of the blood sugar trampoline effect that Grainne blogs about!

GF: Tell us a little about yourself, such as where are you from and what is your job?

TF: I'm originally from Louth and have move incrementally south since, working as Head of Design in Griffith College Dublin, then Head of Humanities in IT Carlow, then moving to Limerick in my thirties to work as Head of Art and Design in LSAD. I now work as Head of Fine Art and Head of Centre for Postgraduate Studies there. I also run our research centre and part of that work involves researching in the area of fine art and chronic illness.

GF: Tell us about the expressive art workshops for adults with chronic illnesses that you are researching at the moment.

TF: Since I could accept and understand my diagnosis, I've been interested in researching the intersection between the arts and medicine. I'm particularly drawn to the area of medical humanities; a way in which art, literature and creative practice can help translate the medical discourse of healthcare, involve the patient and help them tell their story in a way that improves their input into their own care. I'm also interested in the idea of 'otherness', shame and disguise that affects people with chronic illness, and the Gothic version of our abnormal body that the medical profession shows us. I've published an article on this subject in the Gothic Studies journal (‘Blood Sugar: Gothic Bodies and Diabetes ) and presented papers on patient narratives in conferences in Trinity College Dublin and Manchester Metropolitan University.  My current project is to bring this methodology to persons with type 1 diabetes, especially those who are newly diagnosed, in order to focus on the idea of identity reconstruction post-diagnoses. My whole motivation, unsurprisingly, stems from my own painful experience of diagnosis and the extremely limited supports offered to me post-diagnosis, and the consequent desire to help others through this experience. My aim is to work with healthcare providers or patient support groups to do this, and would be delighted to work with any willing small groups of type 1 adult patients. I'm currently researching and testing approaches to this, including body-mapping, creative writing and simple but expressive art techniques.  

Part of my research has involved studying on a great online programme run by the University of Capetown - Medicine and the Arts. Lately I've been extending my medical humanities research into even more taboo areas; I'm also interested in creative practice and end of life experiences. I'm lucky enough to be enrolled on a programme on this, the wonderfully named Kicking the Bucket course, run by two Limerick artists with chronic illnesses, Sinead Dinneen and Katie Verling. Last year, I worked with Sinead and another colleague from social care, Jennifer Moran Stritch, to get Arts funding to run a Death Cafe, a non-medical space where people come together to eat, drink and discuss their thoughts on end of life. Based on this experience, on April 21st I'm running a symposium in LSAD on 'Death/Disease/Design' which is bringing together interdisciplinary researchers to start conversations about how the arts can work cooperatively with models of healthcare right throughout our lifespan.

In the oddest way, being a person with type 1 diabetes has led me on some very interesting directions - researching areas I never expected to, making marvellous connections with a whole range of collaborators, and learning more more about myself in the process. I'd still be the first to put my hand up for an artificial pancreas, but I accept that my T1 status has opened my eyes, taught me some hard lessons in compassion but also some very interesting lessons in medical humanities.

 

Thank you Tracy for agreeing to be interviewed.

 

If you have a diabetes story to tell and would like to share it with the Thriveabetes community, email Grainne@thriveabetes.ie

What does your child want from Thriveabetes?

At last years Thriveabetes, it was mentioned on more than one occasion that we should explore providing activities for children and we have made that our highest priority for Thriveabetes 2016. However, we are only accepting Children from the age of 5 years upwards and our 16+ year olds will have the option to attend the adult sessions.

This begs several questions that would help us develop a programme for them.

  • What does your child with type 1 diabetes want out of Thriveabetes?
  • What do you want for your child with type 1 diabetes?
  • What age is your child with type 1 diabetes?

We are very interested to hear your thoughts and your child's thoughts on these questions.

Rebecca Flanagan is heading up a team of SuperMums to develop a programme for three different age groups and this would be fantastic information for them to have. Remember we are all volunteers and professional amateurs ;-)

You can email them to me at Grainne@thriveabetes.ie, or you can post them in the comments section below.

 

Meet Shane O'Donnell, Young Leader in Diabetes

s200_shaneShane lives in Dublin and has represented Ireland at two World Diabetes Congress (WDC) as part of the International Diabetes Federation's (IDF) Young Leaders in Diabetes Programme. The most recent WDC took place in Vancouver, Canada in December 2015. He was diagnosed with type 1 diabetes at the age of 17, that was 13 years ago. I interviewed him through email as I was very eager to find out more about the World Diabetes Congress and the Young Leaders in Diabetes Programme.

Here's what Shane said;

 

Tell us a little about yourself.

I'm currently working as a Care Research Lead at the UCD Applied Research Centre for Connected Health (ARCH). It's my job to coordinate various projects that leverage digital technology to help improve self care among people with chronic conditions such as diabetes.

Prior to this, I carried out a PhD highlighting the role that adverse social conditions play in the onset and poor management of type 2 diabetes. So I guess you could say I've kind of made a living out of having diabetes :)

Outside of work, I love playing guitar, annoying my house mates with my singing, listening to music and hanging out with friends. I am also an avid cyclist and love keeping fit in the gym, both of which obviously present difficulties for someone without a fully functioning pancreas like myself!

YLD logo

Tell us a little about the Young Leaders in Diabetes Programme (YLD)

The YLD is a programme run by the International Diabetes Federation that seeks to empower young people with diabetes from all over the world to be effective agents of change in their community and in the healthcare system. The programme coincides with World Diabetes Congress which takes place every two years.  I've had the great honour of being representative on the programme twice in a row.

 

What attracted you to the YLD?

My journey as a YLD began five years ago with a chance encounter with the then President Elect of YLD , Alexander Silverstein, at the World Diabetes Congress in Dubai. I went to the conference alone, but it just so happened that I was staying at the same hotel where the YLD training was taking place.

While returning from the Congress one day, I saw a sign for a YLD dinner event... and like any good Irishman decided to gate-crash the party!!!

I was introduced to Alex and got talking about my PhD research. He suggested I should approach Diabetes Ireland about becoming an Irish representative.

Not being particularly extrovert by nature, the idea of me as a 'young leader' in anything sounded pretty preposterous at the time, but I felt passionate enough about my research and about improving the lives of people with diabetes to put myself forward to be a representative at the World Diabetes Congress in Melbourne in 2013.

 

What opportunities has the YLD given you?

To say that becoming a YLD was a life changing experience would not be an overstatement. It gave me the belief that what I was doing as researcher was worthwhile and could make a difference to the world - even if in a very small way.

By providing me with new networks and connections in the diabetes community, it also opened up new doors in my personal career development.

Most of all, however, it's given me the opportunity to develop relationships and friendships with other people with diabetes from all over the world that I hope will last a lifetime.

In short, it's helped me turn diabetes from something that I, initially, saw as a liability or weakness into a source of personal strength and affirmation.

I'll be forever grateful to Diabetes Ireland, the YLD organisers and Executive Council, who carry out heroic work to bring the programme to fruition, for giving me this opportunity!

YLD photo

 

What was your experience of WDC  Vancouver 2015?

Vancouver 2015 is an incredibly exciting place to be for a research nerd like me as you get to hear about the latest advances in diabetes treatment. It also does a better job than most medical conferences of giving patients themselves a voice through inviting the YLD's to speak as well as people from indigenous minorities who suffer disproportionately from diabetes and its consequences.

On the flip side, I think the Congress meetings continue to neglect an important aspect of patient experience and that is the wider social environment that determine the ability of individuals to enjoy a healthy life. For example, there is plenty of evidence to suggest that countries, such as Norway Denmark Finland and Sweden, who actively intervene to improve the social and living conditions of its citizens, have amongst the lowest of levels of obesity and type 2 diabetes (and practically every other preventable condition you can think of) in the world. Yet, diabetes continues to be discussed at conferences like the WDC largely as a problem of poor personal choices made by individuals. Given this startling statistic, should there not be at least some debate about what kind of society we need to create in order maximise the chances of everyone to live to old age without developing potentially debilitating conditions such as diabetes and cardiovascular disease?

 

Here are the IDF's video of the highlights of the WDC Vancouver 2015. To me, Shane is an inspirational leader and I feel that we can expect great things from his research work at ARCH and beyond.