Steven: Epilepsy Avenger

9 November 2018

A little over a year ago, my life was in a dark place. At that time I had just been offered a place on Epilepsy Connections in-house self-management/Wellbeing programme ‘Epilepsy Futures’.

Steven Vol StoryEpilepsy Futures is a 3 day per week programme which runs in six month blocks…It has absolutely changed my life!

As a result of graduating from the Epilepsy Futures programme a whole range of new and fully supported opportunities opened up to me. After completing my time on Epilepsy Futures, it was suggested to me that I consider becoming a Volunteer Peer Mentor with the 2nd group of 10 participants. Epilepsy Futures working model provides a small number of Peer Mentors to help support successive groups (who have all been through the programme themselves) I grabbed this opportunity and haven’t looked back…this is where my volunteering journey really begin with Epilepsy Connections.

I have a huge passion and enthusiasm for supporting individuals living with epilepsy and I strongly believe in the importance of delivering diverse messages and training for vulnerable groups, organisations and individuals regarding epilepsy and stigma.

I want people to understand that although life with epilepsy can be really awful at times, that it can get so much better with the right support and information. My experience has changed my life, and I want others to have that experience too!

Volunteering with Epilepsy Connections is not only fun, it's extremely rewarding and inspiring. The support provided to myself and the other volunteers means that my experience has been really positive. We are all really well looked after.

The organisation takes the long term self-development of it’s volunteers very seriously and I have really benefitted from this. They are always looking to offer new additional training and development opportunities for us above the standard training. I have had some really amazing opportunities.

Since volunteering for Epilepsy Connections my skills and confidence have greatly strengthened, I have been able to present workshops and be a guest speak at a whole range of events that I would never have thought possible before meeting the organisation.  I have also made lifelong friendships within the epilepsy community that are so important to me!

EC_logo _with _strapAs my confidence grew I have become more involved across the organisation. I also now volunteer to help support the operation of Epilepsy Connections Children and Families Project, which means that approx. every 6 – 8 weeks, we go and have fun with a different activity e.g the Go –Karting. During this volunteering I am able to help children with epilepsy and their families to access some quality time and fun, it is very close to me as I was diagnosed with Epilepsy when I was 4 years old.

I also volunteer to help support the operation of a monthly social group run by Epilepsy Connections, called Friends Connected, this is for service users who would like to come out, relax and socialise for a few hours at a local Ten Pin Bowling site. It is a fantastic way for people to make new friends and discover that they are not alone!

Not only that, but I am also a fully trained befriender now, which means I am matched up with one person, who I go out with fortnightly to spend a few hours together accessing some kind of social activity. Seeing my befriendee’s life beginning to change has been so emotional for me.

It has been an extraordinary and inspiring experience. I would absolutely recommend volunteering to anyone, it has opened up new opportunities for me, given me new skills and allowed me to meet some really special people.