Isolation and loneliness is something that we all feel at points in our lives, but what are the effects if it becomes an everyday occurrence? One can surround oneself with countless people yet it doesn’t alleviate that sense of feeling alone. In some respects it may enhance the loneliness felt by increasing the number of people.
Many have conditions that are life changing in their effect but they’re understood and accepted due to the knowledge and information which has been provided in society. Cancer, heart problems, Alzheimer’s these fall into this category along with many others. They are fully recognized but still remain at large but the stigma is omitted. Did you know epilepsy affects more people than cerebral palsy, cancer, tuberculosis, muscular dystrophy and multiple sclerosis combined?
The stigma attached to epilepsy originates from the many myths which surround/ed it and continue in today’s modern world. There was the understanding that people were possessed, it was the work of witches, wizards or demons, it was contagious or even that it was caused by masturbation. People who aren’t aware of the changes and the realities of epilepsy and who still believe many of these myths create a perfect environment to breed isolation, loneliness, depression and alienation. Shunned by others for a condition in which we have no choice, countless people end up without support from families, and friends walk away due to their fear and lack of understanding.
I have spoken to numerous people who are directly and indirectly linked with the condition and it is heartbreaking to hear their experiences of this. Many don’t reveal their condition because the fear of rejection and losing the few friends they have gained by not disclosing it. In these situations, what is created are circumstances that put both the individual with epilepsy and those surrounding him/her in danger. This is because if a seizure should take place with no knowledge of the condition, without the right help, ultimately the person could die.
I have met a few people recently who are very focused on their condition, constantly speaking of activities that it doesn’t allow them to do, their seizures and their negative interaction with others. Although it is positive to vocalize this, the main reason they do is because they don’t have friendships or the opportunity to forge relationships where there is a life outside of epilepsy. They miss out on the prospect of enjoying outings, conversation and the wonders that life beholds, which again is nothing short of heartbreaking.
The epilepsy support groups are wonderful. They give people an opportunity to interact with each other in a safe and non-judgmental environment whilst sharing information that may not be known but is beneficial for another. However, as useful as these meetings are it is not a about socializing. My intention here in Seattle is to begin a meeting for those directly and indirectly linked with epilepsy simply to enjoy activities around the city in a safe accepting environment, developing friendships and constructing a quality of life which can be built upon. My hope and intentions are that it will boost self-esteem and self-worth providing confidence and room for that to grow for those who feel isolated due to something which is completely out of their control. I have continually heard and read that this sort of support isn’t available to people who need it. Ultimately, we should be making this available! For a condition that is so prevalent in an age where there have been such life enhancing technological advancements, to me it seems rather backward. However, that being said I can’t help but wonder if it is related to the break down in community. The stigma may remain but when did we stop caring about our neighbors and those that live in our immediate and extended community? Looking out for those who need it and offering whatever help was required, offering good will. I still see it every now and again and am always reminded of the good in the world; however, we still have an awfully long way to go. The irony is that isolation breeds isolation.
Residing in Camphill was one of the best experiences of my life, living and assisting in the workshops with everyone together. Helping with whatever needed to be done with age, ability, race or sex irrelevant. There was caring, goodness and a voluminous amount of love between each and every person. Every day living was not without the inevitable natural human conflict, but it was admirably discussed and resolved much like watching ripples that begin quite substantially and slowly dissipate.
When is it that are we going to learn that we need to care for others? We are all interconnected and by showing consideration for others it will help eliminate a problem which doesn’t need to exist.