Community & Connection
Over the past few years I have been working on learning about my conditions and especially the pain I am in. At my Hypermobile Ehlers-Danlos Syndrome diagnosis the rheumatologist broke the news to me that I was in fact in pain and had been from a young age. But as a human being that doesn’t scream and roll around the floor in agony, I didn’t understand what they were saying. After all isn’t that what pain looks like?
“I’m not in pain!” I thought furiously to myself. I truly thought that I was normal and this appointment marked a turning point for me and my relationship with pain. Being given a diagnosis and learning to accept it is a long journey. I was relieved but then I was left in a state of utter confusion. How the F%*K am I going to live now? Like before?
Medication Issues
I can’t take medication for pain relief for several reasons, firstly it doesn’t actually do much. I have tried but even the morphine in hospital made me high and didn’t do that much for the actual pain and discomfort. And two, there is a family history of NAFLD which means I need to be cautious with how I interact with medication.
And another sneaky third reason is that depending on the pain medication, I get constipation and tbh the original pain is less than the inevitable awful bowel movements that happen weeks after. It isn't pretty and it is very painful.
Medical experts now know that overmedication is not a great thing in the long run. Yes many people require pain medication, that isn’t in question. But now there is a realisation that pain management in many cases needs more strategies than just drugs for people to live in Pain.
Being an ambitious person who loves challenges and to learn, I got to work. How can I thrive in pain? I turned to many therapies, both mental, emotional and physical. I have worked on my mental wellbeing by really seeing myself and the experiences in my history that have caused substantial trauma. And I have turned to physios, osteopaths, acupuncturists and chiropractors to relieve many muscle tensions.
Many therapists have been clear with me. It is up to me to change my mindset for me to thrive. I have tried to avoid the pain but it soon dawned on me that I must really go forward into the pain than distract myself from it.
The search for Community
One concept that came up and up again was that of “Community.” That the places and spaces we find ourselves in really can help and hinder us. I looked carefully at the people I spent time with and the places I dwell in.
I have moved multiple times, every time iterating for a place that suits me at that moment.
And I have searched for that sort of community that makes me glow.
From the research it is clear that time well spent in a community is healing. And I truly believe I have had a transformational experience a few weeks ago. But this story about my community starts a while back. Twenty Five years ago I went to university. I choose to study Management at the LSE. It was that first Michaelmas term that I was introduced to an organisation that would change the direction of my life for the better. I met the CEMS alliance.
Over the past 25 years I have tried to distill what makes CEMS, CEMS. I have been a CEMS Slub member, CEMS Student board member and president, CEMS Alumni Club member and more recently the CEMS 35th Anniversary Celebrations Website Editor.
CEMSational!
I have learnt that to support both my immune and nervous system will lead to an increase my window of resilience and pain threshold. There is plenty of research to show that groups that come together with shared values can have a profound impact. So these days I make the effort to surround myself with deeply enriching, stimulating community and people.
I am a Highly Sensitive Person and a deep connection and intellectual company with purposeful profound discussions are necessary for me to live. Without this, I fail to thrive, I feel myself become ill. Without realising it, CEMS has always been this deeply stimulating community which over the decades has been a healing balm when I didn’t even know I needed it. There is now much research about how a community is so necessary in a healing journey. While I can never be cured, I can thrive, even in pain.
How do I know it has been healing and transformative?
Firstly I can feel it in my body, it feels safe, anchored and I have no need to mask and contain my need to express myself. Secondly, when I encounter this healing energy, I do have much more resilience, able to thrive at a much higher level and in real terms, my creative energy flows out of me and I have spent the day journalling so many ideas, concepts and reflections.
My own experiences convince of what we already know.
The CEMS community is a deeply supportive and transformative community.
To be with the CEMS Students and alumni this week, to be welcomed and see them and be with them has been transformative and healing.
How can a group of people I have never met enable this?
I am not qualified to answer that from a medical point of view but I do know that from what I have read about pain that those that come together in such settings often benefit each other. Heart beats and breathing rates synchronise and this connection becomes truly healing. In fact in the UK there are now Pain Cafes being opened where those with chronic pain come together simply for support. "Skills not pills" is how one member calls it.
CONNECTION
My purpose is to seek deep and authentic connections with people who resonate deeply with the world and humanity.
HEALING
Gentle healing happens to me when I connect in with wonderful people and places. The body feels safe and moves into a balanced soothed state.
CREATIVITY
Once the body is safe, it begins to express itself.
For me, I find and feel the flow of creativity without even trying. It just is, gently and softly.
Over the years I have tried to find such wonderful deep stimulating people. In my dance, VoiceOver, art, work lives, I have tried to find people with purpose, drive and ambition for life.
And nothing has ever matched CEMS in depth or purpose. While I still don’t know the magic ingredient, speaking to Nicole de Fontaines I realised something. CEMS was forged in the fire of friendship and that has percolated to every CEMS cohort over the decades. CEMSies have something special about them that is purposeful, transformative and impactful.
Pain & Pleasure
In Portugal I have the privilege and pleasure to be invited to speak with the CEMS students. Arranged by wonderful students Katrin, Maria, Ana, Alex and these students were truly authentic with their total commitment to be future responsible leaders. I told the students that the future takes care of itself as the present is what counts. I don't need to worry about the future, not when I have met the most marvellous and special students who will go on to have an impact on this world. How do I know? Because they have already had a huge impact on me and my own pain.
Find your Community
I have found support groups and communities off-line and on-line and created some of my own. But the CEMS alliance has given me support when I really needed it in ways that have made profound shifts in my pain journey.
I for one, live and thrive knowing that my community is one where there is intellectual and emotional stimulation and an incredible kindness that has real impact on me and changes the world.
We all need a community for our wellbeing, mental, physical and emotional. Where is your community? Who are your people?