“Alone we can do so little. Together we can do so much ” ~Helen Keller ~
I’ve been diagnosed for a long time with my cavernoma. I was 14 years old when I got diagnosed.
So that is 22 years of ups and downs, of strokes and surgery and depression and many, many tears but also lots of love and joy and learning and discovering and yes even laughter.The day I got given oral morph and wheeled down for a brain scan was highly entertaining and it was the day Freddie (the Cavernoma) got his name.
In that time I have discovered some amazing charities that have helped me. I have talked a lot about Headway who are incredible and who I continue to support. But last weekend I was lucky enough to be able to attend the Heal your Brain retreat. Organised by my lovely friend Simona who is the founder of the fabulous charity Cavernoma Society.
I have to admit I entered with a little trepidation not of meeting new people or of the retreat itself. But because I can find these things quite confronting. I don’t know many people with Cavernoma and I have managed to heal myself to a point where I lead a fairly normal life. So meeting others always puts me back in a place where I’m reminded that I am ill and I do have to work at feeling well.
I really had to reason to worry. From the second I walked in I was greeted into the group with open arms. Yes we talked about Cavernoma and symptoms and surgery, but never in a negative way. Cavernoma can cause many different symptoms depending on its location and if it’s bled or not. The symptoms range from epilepsy to stroke, chronic fatigue, visual impairment, central pain syndrome, depression. Add on to that the symptoms caused if you are on medication. Despite all of that not one single person moaned or complained including the incredible children who attended. We shared our stories, we shared our lives. We laughed, cried, encouraged joked,meditated and just shared the most incredible weekend.
We had amazing yoga lessons with Estella Energy Worker including partner yoga which really helps to build up and learn trust, we learned how yoga can heal your brain by stimulating the Vegas nerve and your parasympathetic nervous system, we meditated with Kath and found out how meditation can help strengthen the grey matter in your brain. Did you know that just like a muscle your brain needs to be regulary worked out. Meditation is literally pumping iron for the brain. Lol.
We used our breath to bring us into a rested and relaxed state. We all zoned out to some yoga nidra.
We shared, laughed and cried through compassionate therapy with Ellie
I walked away with friends for life, a new appreciation for Cavernoma and the support of people in the same boat as me. I will no longer be scared of, or shy away from admitting that yes I have to live with this. Healing does not mean hiding from what happened. It means embracing and letting it help me grow.
Myself and Simona are lucky that we live in a postcode that gives you incredible treatment and aftercare after being diagnosed with Cavernoma. Simona soon realised after meeting other sufferers that not everyone gets the same level of care. Inspired by this Simona decided she wanted to offer some help and rehab to those who were not as fortunate. With the help of the People’s Postcode lottery, Cavernoma Society are able to offer these places completely free to Cavernoma sufferers and their caregivers.
Details of the next retreat are out now.
To register your interest for the next retreat you can send a message to the charity here