Speaking on Stage
Last week during #InvisibleDisabilitiesWeek I spoke on a huge stage in Portugal about my life with Hypermobile Ehlers-Danlos Syndrome and pain. It was incredible to share this stage with fellow CEMSie Leonardo Lotto who I finally met - we had been due to meet in London in 2023 but my eyes had other ideas. Finally meeting him in real life, it was as if I had known him for years. I was speaking up on stage at the wonderful ESTORIL Conferences. This is a high level conference with speakers from many disciplines and including heads of state and Noble Laureates. It was held at the exceptionally amazing NOVA SBE university. Our Chair was a doctor of neurology at the nearby medical university. Chair Prof. Dr. Miguel Vienna Bautista told me that he thought my book was wonderful.
At this conference #ReThink, we were invited to learn & think about things. The world is changing & I was invited to speak along with Nobel laureates, visionary leaders, daring thinkers. The First Lady of Ukraine, Olena Zelenska, & First Deputy Prime Minister, Yulia Svyrydenko spoke as well as Human Rights Defenders, Medical Experts and Artists.
"The whole conference really made me think about the topics, I was deeply moved by the words of many of the speakers and I really felt an overwhemling sense of hope for the future. Thank you ESTORIL Conferences, what a transformative experience it has been. Thank you for letting me share my story and bring awareness to Hypermobile Ehlers-Danlos Syndrome and what it is to live a life in Pain."
Transformational Moments
This was the first time I had left the UK in almost 5 years. I worked gently on my travel & medical anxiety. I have found it much harder over the years to relax and calm myself as I feel that both my body and brain are always on and trying to keep me safe by being far too much! I was particularly nervous about Eye-Leen. I soothed my nervous system, teaching my brain new experiences, increase my resilience & pain threshold. The organisers had transport, lodgings, food, even hair & make up taken care of. This made me feel very safe. For someone that worries a lot about my health, this really helped me out.
Power of Portugal
I have had a truly transformational & healing experience - it may have been the sunshine, Portugal, the welcoming people, maybe even the food - but being seen by so many people at this top level conference with an invisible condition has had on impact on me. There were so many students, many in medicine that I hope that what I said landed with them all. I feel such a strong sense of purpose about how important it is to be seen especially with a "rare" condition. And I am profoundly grateful that a rheumatologist from Harvard Medical School and a Professor of Neurology from Nova medical school both saw, sympathised and believed in me and my pain. I really wish all medical professionals give all patients such kindness. What a change!
Pacing Pride
Pre-pandemic I used to go to many conferences. From beauty to cooking to voiceover to gaming - all of the areas where I have a passion for I would go and check out the conferences. I have had a tendancy to go full out on Day 1 and pay the price on Day 2. So this time, I paced myself and listened to my body. I took a moment to close my eyes and chill in the speakers room. Then, I realised that at around 3pm on Day 1, I was flagging. My physical, mental, social battery was draining away quicker than my iphone! There was a very fancy dinner organised that evening and I love such things but I realised that to go to it would be a bad idea. So instead I declined my space and got the car back to the hotel, had a bath, dinner and went to sleep. I am so proud that even at a busy conference I still found the head and body space to listen to my energy levels.
Magical Microphone
It was great to be fitted with a head set microphone. Why? I struggle to hold things in my hands and a hand held mircophone would be too heavy in my hand. My body including my hand, arms, shoulder, back would try and work to hold the microphone and it would mean I would injure myself and I don't want that! I was proud that I asked for the head set mic and lived my Madonna dancing dreams!
Feeling Seen & Heard
Over the two days of the conference I spoke to many people including several medical experts. I will now always appreciate those that came up to me and spoke about their own issues. I greatly admire their bravery in sharing their own stories and they have inspired me so much to carry on with my own purpose. I truly believe we can heal when we acknowledge to ourselves our own stories as well as when others see and hear us from an authentic point of view.
"ESTORIL Conferences is the example to follow for their support systems for disabled speakers"
ESTORIL Conferences have blown me away with their professionalism and care towards me as a dynamically disabled human with chronic conditions. One of the reasons I hadn't felt ok going abroad is medical anxiety. I was worried about my health needs and what the event would be light. Too hot, too cold, too busy, too much? These questions were in my mind a lot, worrying me.
But at each stage ESTORIL Conferences cared and supported me. It took a lot of planning for me to get on a plane and I had learnt new techniques to help me. I in fact did have a medical issue - the day before I had an encounter of the crunchy kind with a de-shelled pistachio. My tooth was in agony on the day of travel and it took a lot of skills for me not to panic. But at the hotel, the wonderful concierge arranged a dental appointment that day. I was seen quickly, had an x-ray and thankfully my tooth was only bruised. A quick trip to the pharmacy for pain relief medication and I relaxed. At every point and every stage of this amazing conference, I felt so taken cared for. Thank you to all the amazing members of team ESTORIL!
A fabulous example of "If they wanted to they would!" I am so glad and grateful for this - what a difference it made. It really isn't hard for disabled speakers - a little more thought and planning is all that is needed. And some hugs! A special thank you to Laurinda Alves, Carla Abreu and Catherine da Silveira for their special attention, invitation and hosting. Simply Wonderful.
Community Connection
Over the next few weeks I will post about how the community I was in made a huge difference to my mental, emotional, physical well being. I had an opportunity to spend time with a wonderful group of people that I feel healed me.
I will always feel pain but I have been working over the years to build up my resilience and my pain threshold. There really is a change I have felt within me that has given me a much needed boost.
I look forward to sharing with you the videos and information about the conference. Some snippets you can see on my social media.