Digging Deep, Finding Hope, Moving On.

My life was in an extremely dark place for about two years from 2015 till 2017 and am proud and privileged to say that epilepsy connections and epilepsy futures has absolutely changed my life!

As a result of graduating from the Epilepsy Futures programme a little over a year ago, a whole range of new, exciting and fully supported opportunities opened for 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) 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 positive messages and training to 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

Discovering that you have Epilepsy can be one of the most challenging and distressing moments an individual has to experience in life. You may feel frightening, nervous, worried, panic stricken or even hatred.

Its critical to keep in mind, these feelings you are experiencing are common of a person with an Epilepsy diagnosis – this is OK though and a perfectly natural element of confronting a burden that can be seriously life altering.

It is Important to state Epilepsy doesn’t have to prohibit you living a happy and fulfilling life, with the appropriate treatment and support, it is extremely possible to live a life of positivity, satisfaction, happiness and enjoyment.

There are a lot of misconceptions about what it means to be living with Epilepsy. Fundamentally , everyone’s lives are different, and how you manage your diagnosis and move forward will vary from person to person.

At the age of 21, I was diagnosed with tonic clonic Epilepsy, after successfully accomplishing seizure free status from a long developing period of petit mal(absence seizures) as a child, where I experienced 300+ per day for seven years.

The tonic clonic seizures, there is no explanation to why these shocking and terrifying seizures has came upon me. Unfortunately it just happens, there is know explanation, I’ve been fight fighting for one for a few years now and my medical records are very much inconclusive. It’s a condition that can creep up on anyone at any age.

The seizures uncontrollably begin without my knowledge and out of the blue, I wasn’t feeling unwell at any specific time, I hadn’t suffered from any head injuries previous to encourage the seizure activity in my brain.

Epilepsy certainly does not have to stop you from achieving, it’s not the end of the world, it feels like that, but it’s not. Their is so many incredible and important support services nowadays, there is every kind of support for everyone, never ever give up.

I have not let my Epilepsy hold me back, for many years I did, there were extreme periods of darkness, every day was extremely dismal, leaving the house was a massive challenge, putting on brave faces every where i went. However i have certainly realised, life is far to short, I’ve got a life to live and I am most certainly going to live it.

thanks to Epilepsy Connections and Futures, i have learned that self-acceptance is key, however social acceptance requires huge efforts especially in the fight against stigma, which we often have to cope with on a daily basis, but, why should we?

Reflecting back on my time at Futures. I am generally filled with emotions as my life has changed immensely for the better.

I am not that young man anymore who was scared and embarrassed to leave the house in the event of a seizure occurring, awaiting the next episode and dislocated his shoulder.

I am exceptional and remarkably proud of my positive and successful outcomes and the influence and advantages that Futures has had on my life and for engaging in friendships that I definitely know will be friends and a support network for life.

I have discovered from my own futures life experiences that I have a passion, enthusiasm and determination to help support individuals living with epilepsy.

i am absolutely embracing all opportunities with Epilepsy Connections since graduating from the Futures programme. I am honoured and privileged to now be a volunteer with Epilepsy Connections.

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! As 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. I have a befriend whom I regularly support to engage in social activities such as: bowling, playing pool, lunches, employment support, advice to access more support services including his local fieldwork service etc.

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. I would like to take this opportunity to thank everyone that I have been fortunate to work with and meet during my journey over the past few years, too many to mention, you all know who you all are.

Steven Connelly

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