HOW ARIANE INSPIRED ME
By Sarvi Eastell
Setting up and running a social enterprise company, from scratch, is a unique journey. As a surgeon, I knew that patients could do much more for themselves if they were aware of available resources and how they could use the health system. I wanted to find a way to enable them to start, and to have someone to hold their hand on the journey. It was my time with Ariane that inspired me to keep going when I was at my lowest ebb.
In 2013, my husband and I moved to Highgate and started looking at recommended au pair websites to find childcare help for our son. Ariane had written a beautiful piece which caught my eye instantly. It was obvious from her words that this 24-year-old Austrian girl had a heart of gold. She was applying to be an au pair in London, having taken a sabbatical from her psychology degree. She had the right background to be brilliant at it and she also had the emotional intelligence that would make her stand out a mile.
Unfortunately, timing meant we just missed each other. That didn’t stop Ariane from asking if she could still come to visit me. Openhearted and warm, compassionate and caring, she played with my little two year, and asked all about my start-up: a social enterprise delivering patient empowering medical navigation. Little did I know…
She and my new au pair quickly became best friends and closely shared their London adventure together. I enjoyed observing their friendship, two young women, exploring our London of 2014, and it was a pleasure to know that their parents felt confident of their safety.
When Ariane died last summer my heart broke. Her loving family came to London and she was cremated locally following a post mortem. Her sister, brother and grandmother stayed in my home and I learnt about the turmoil of a family, and of a patient, burdened with a chronic illness.
Ariane was born with a heart defect and needed many operations throughout her life. She had a wonderful specialist doctor back home, whom she had known all her life. Perhaps he was her Cardiac Surgeon.
For Ariane, the tipping point came when her doctor retired and she met her new doctor. I cannot be sure of the details but it struck me through conversation that the transition was emotionally painful for her and that there was a dramatic shift in communication style and that was very hard. Ariane was told she was nearing the end of her life but that message had not been delivered tactfully. Her family pleaded with her to accept the situation. To stay local, be careful, and obey the local heart-lung transplant guidelines.
But the sense of imprisonment was unacceptable to her. Whatever it was, for Ariane, something had to change. It was then that she decided to fulfill her dream to come to London. She wanted to travel, explore, meet people and embrace life.
When I met her she made it completely clear that her intention was to meet as many kind hearted human beings in London as possible. She loved London. Perhaps for its cosmopolitan diversity, its history, the sights; but most importantly for the sheer number of human beings from all walks of life that she could encounter and talk to. I remember her telling me about a late night conversation she had with a girl from Newcastle who decided to teach her a selection of difficult words she would need but unlikely to come across: ‘colander’ being one of those.
Thanks to her insistence and perseverance, her Austrian Pump Provider company flew over and taught correct maintenance of her pulmonary pump. Through this she established a very close relationship with The Royal Brompton Heart Hospital.
She had never shared her health details with us because she loved the respect she received as a healthy human being, rather than the pity she feared as a terminal patient. Although we knew she visited The Brompton frequently, almost twice weekly in her final weeks, she did not want to discuss the details. Her last weekend was here at my house. She and my au pair visited Harry Potter world. She embraced the giant tree. She was happy.
Her sister shared the agony after Ariane passed. Was Ariane selfish for choosing to live her life as she saw fit? Was she selfish for giving up her right to be on the Austrian Heart-Lung transplant list? Or was she empowered to ask if she could be on a pan-Europe list? Why can’t such a thing exist? Did she ask the medical professionals? Did they talk this through with her? Knowing Ariane, she would have asked, and they probably did.
To those of us in London, she seemed profoundly empowered and responsible. She gracefully voiced her need to rest, as and when. She visited the doctors frequently and was completely compliant. She was an adult and chose her own degree of privacy and care.
She lived her last few months as an empowered responsible patient, with joy, adventure and happiness, embracing every second of life she could grasp within the limits of her condition.
After writing this piece I shared it with Ariane’s mother who then generously filled in the gaps. It turns out that when Ariane stayed with us here in Highgate, she shared her happy stories with her mother. Ariane felt safe and strong here. She was so empowered she didn’t need to tell me why she chose to stay with me. And that’s it. This young lady was happy here, and that’s why we have her story to share.
Thank you Ariane for showing me the true value of self empowerment. You knew all the details. You had it all under control. You made both health systems work for you and support your desire to live in London. And for just shy of a year, you did it!
Your loving mother tells me you’d like what I’ve written. I’m not a writer but when I was asked to write a piece about Holding Your Hand, I could only think of you: When you died I thought my work was pointless, but what you told your mother about being here has inspired me to have you as my benchmark of patient empowerment.
Sarvi Eastell is the founder of ‘Holding Your Hand’. Medical navigation is delivered through bespoke research packs and virtual consultation. For more information visit www.holdingyourhand.co.uk