Following on from my article posted on this website in 2022 about my journey of living with Crouzons Syndrome, I thought I would share my experience of being involved in the ACCORD research project. ACCORD stands for Adults with Craniosynostosis: Creating Online Resources to Reduce Distress. Being part of the research project feels like another aspect of my story has opened – the emotional impact. It was such a cathartic experience. Another silence broken, facilitating further healing and insight.
2022 has been a very significant year – another part of the journey of discovery with Crouzon’s, which started when I joined the ACCORD project in 2019.
Although I have had extensive surgery for Crouzon’s my appearance now hides this truth. Scars are hidden in my thick curls and my many facial scars are hidden in wrinkles – aging can be kind in that way. My surgeons (long before the formation of specialist units) focused on the aesthetic correction as much as the physiological need. I was bullied extensively for my different appearance at school. However, since then many people find it hard to believe I have endured so much and continue to be significantly affected by Crouzon’s. Subsequently, I learned to dismiss my experiences and brushed off all I endured, both to others and myself. Therefore, part of me didn’t feel good enough for the attention afforded to my story in being part of ACCORD.
The filming day with the ACCORD team was in October ’22. Everyone was so lovely, kind, dedicated and compassionate. They had clearly immersed themselves in my story beforehand. Their investment in my story and such kindness had a huge impact on me. An incredible experience. Was this the acceptance, hope of being and belonging I had quietly longed for all my life?
It all felt incredibly surreal that day. I felt almost dazed – like being in a full-force gale. Was this a dream? Whilst being filmed I felt real sorrow for those listening. Hearing myself talk about what I went through sounded tragic; what was I putting these poor folk through? My sister was with me that day, which I was so grateful for. I have been acutely aware of the negative impact Crouzon’s has had on my family. But maybe this filming day and the research has helped her to have a voice too. These things often have positive ripples that we are not aware of at the time.
The image in my mind straight after the filming was of huge, thick steel doors being swung wide open. The doors of silence burst open; my emotional story in plain sight. It felt like a whole new world of me had been opened. I had been heard and embraced. That can be very scary if one is unable to feel safe within that opening and depth, so I cannot thank every member of the team enough for the compassionate love and support given that day and through the process.
Another major event took place in 2022, when my son sustained a severe brain injury in a road accident. Suddenly I was back there intimately immersed in the world of ICU, monitors, cranial bolt, ICP, followed by his slowly returning consciousness, trying to piece together events. It took me back to me own experiences when young. In supporting his recovery and linking with a brain injury charity, Headway, I made sense of my own neurological injury as a result of surgery, CSF leaks and subsequent CSF fluctuations. I have been able to piece together and make sense of my own experiences, physiological and psychological. I have gained a stronger voice with medics and, perhaps more importantly, to myself.
As a Psychotherapist my specialism is in developmental trauma. In this aspect I am increasingly drawn towards the experiences of those of us with a craniosynostosis. The next part of ACCORD I am involved in is the older adults story – the experiences and meaning-making of those of us who are 40+
One of the problems with having a rare condition is that there are so many levels to the mystery. It can feel very isolating. I grew up feeling so alone, like no one else had been here before or could know what it’s like. A silence. Through Hannah’s Fund, Headlines, and now the ACCORD project, there is connection, a shared story, even though our journeys are very different.
After these seismic events the ground can certainly feel precarious. It has been life changing, especially within my current life-stage (in my 50s). What this all means for me I don’t know yet. I just know there is no going back. What I do know though is that I have been empowered to meet the challenges whatever they might be.