Last weekend, Charles Hastings took part in a day with patients suffering from congenital cardiomyopathy, a cardiac anomaly that can cause sudden death. It was also a day for their families, who, in addition to being on the front line as carers, are often symptomatic or asymptomatic carriers of the gene responsible for the condition.
“These patients, of all ages, must avoid certain activities and have a continuous system of protection and emergency care to cope with possible cardiac arrest. In France, there is high quality care for this condition, combining advanced technical support with logistical and psychological support not only for the individual but also for the family.
“It was moving to listen to children, parents and loved ones talk about their experiences and how they help each other. They were keen to discover meditation, above all as a relief for stress. However I felt that, faced with one of life’s most fundamental challenges, they already had a certain depth of experience that is often lost in the usual habits of our high speed lives. It was wonderful to spend a quiet moment together, to be just present, and to generate love in a spirit of solidarity and sharing. ”