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Hanging on every word – reflections from the 2017 Action Duchenne Conference

Posted on: December 6th, 2017 | 0 comments

One of our wonderful Parents, Lizzie Deeble has published a guest post on ‘Conference Inference’.

Lizzie Deeble writes about her first experience at a conference, where she found she was attending as a parent, a carer, and an individual in her own right.

“During the weekend of the 10th-12th of November 2017, exactly 13 months after my now 3.5 year old son was diagnosed with Duchenne Muscular Dystrophy (DMD), my husband and I attended the annual Action Duchenne Conference.

There are so many aspects of this statement that I wish to address during this post, not least of which is the fact that this was my first ever attendance at a conference. Not my first time at a conference about my son’s condition, or even my first time at a conference with a medical slant. But actually my first conference of any kind. I imagine that for most of you who are reading this blog, that is somewhat unusual. But I am not an academic, not in any way. Instead, I completed my academic studies at the University of Edinburgh in 2007 having gained an Honours degree in Community Education, and went on to do various jobs within the vast field of ‘youth work’. I gave up any kind of paid work after having my first child in 2014, choosing to focus my time at home. Having been largely disillusioned with my university experience and with studying in general, it never occurred to me to further explore this side of my life and so nor did the opportunity to attend conferences ever present itself. This meant that part of my anxiety around going to this conference was actually that I felt as though I was a bit of an imposter. I had no idea what being at a conference involved. How you know which rooms things are taking place in? Can you be late to a session and can you leave if it gets too much? Is it ok to ask a question? Should you attend a session in every time slot – is it frowned upon to take a break? What if I have absolutely no idea what any of the experts presenting are talking about? My day-to-day tasks involve changing nappies, singing nursery rhymes and managing a toddler’s behaviour using short, easily understood and often repeated sentences. The thought of spending two and a half days conversing with other adults, particularly the experts and academics involved, genuinely presented me with a surprising amount of trepidation.

This conference is similar in many ways to any other in its premise. It brings together world experts within the field as well as those interested in learning more. The sessions ranged from support for newly diagnosed families to research and clinical trial updates, standards of care, associated behaviour and cognitive issues, nutrition and much more. They were designed to be useful for anyone who is involved with the disease at whatever stage. This also included sessions run for and by young men living with DMD. But perhaps most importantly, one of the main purposes of the conference was to provide a place for support and community, and this is where it differed from other conferences. Of the 600 delegates, most were connected to the disease on a deeply personal level. They were either living with DMD themselves or were the friends and families of those who do. And that made attending the conference far more than a learning experience. It meant that the information gathered would be put into practice on a daily basis. I joined the crowd around the expert physio therapist with the inherently unrealistic yet overwhelming need to absorb all of her years of experience in one session, to make myself an expert in that one hour because it remains one of the only things I can do to help my son. It meant that while researchers discuss their latest findings through presentations and slide shows, those listening heard it with a desperation that cannot be overstated. We hung on every intonation and every word, trying to work out how much could be translated into hope, and trying to decide how much hope was too much. It meant that in the session for newly diagnosed families, there were many tears shed. But crucially, it also meant that the person standing next to me at the coffee break was very likely to have had their hearts irreparably shattered too. Both the passion and the compassion were palpable.

The academics, be they doctors, scientists, physiotherapists, psychotherapists or one of the many other kinds present, were for me one of the revelations. At the beginning I addressed my fears of inadequacy, and yet without fail all of those presenting were approachable and spoke in a language I could understand. A particular highlight for me was the session on brain research which addressed incredibly complex research in a way which made it accessible to someone who spends much of their day singing nursery rhymes. More than that, what really struck me was the passion with which these people spoke about their work. They are dedicating their working life to treating this disease, and for all of those I came across this is far more than simply a day job and there was a feeling that they truly understood that for us, this is was personal. While essentially most academics were there to present their work, they were also very present throughout the conference in terms of attending other sessions and also in speaking to the delegates at other times. Perhaps most importantly for me was the fact that speaking to those presenting at the conference was a very different experience to talking to the experts involved in my son’s care at medical appointments. The shift in dynamic from the parent of a patient, when I feel more often than not treated as a part of the patient, to an individual in my own right was empowering.

This brings me to what was personally one of the most important aspects of the conference. Attending the weekend while trying to balance the care of two young boys was frankly a logistical nightmare. It involved relying heavily on the incredibly supportive family I am lucky to have. It involved paddling very fast under the water while attempting to look serene. Action Duchenne had provided support of their own in order to address these needs as best they could in the form of a brilliant crèche and teenage zone with a wide range of activities, but for various reasons this didn’t work for us this year. It was the balancing act with my family that meant that I could attend almost all of the sessions that I had wanted to. When reflecting on this, I realised that those two days were the only time in 13 months that I had been an individual in my own right within my son’s diagnosis. I had the time and space to learn, to ask questions not just for him but for me, to process, to try to understand. It meant that instead of dealing with the relentless every day needs of a young family which include a child with additional needs, I was able for the first time to take a step backwards from the immediacy of everyday life. In short, I was able to take a breath. And yet the real complexity in all of this is that I took time out from my caring responsibilities in order to attend a conference with the purpose of becoming more able to fulfil my caring responsibilities. There’s the true meaning of irony.

There is so much more that I could address about this experience, but I will close with the fact that I came away from the weekend feeling emotionally exhausted at having owned the part of my identity that is taken up with my son’s diagnosis. Having taken that breath, I then needed to pick the rest of life up and carry on. But far more importantly I found that the sense of community and support was the lasting impression I took away. I learnt a huge amount from the academics and experts over the weekend, but the main thing I learned was that I am not alone. And at just over a year into this journey, that is the most powerful message of all.”

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