Finding Hope, Digging Deep and choosing Life.

My name is Steven, i am a current volunteer with Epilepsy Connections with there projects within Glasgow and throughout Ayrshire and Arran which I enjoy very much.
My Favourite Food: Scottish Fish Supper ( you can’t beat them) 😂😂
Favourite Song: Comfortably Numb .Can i have a favourite album also? Pink Floyd: Off The Wall, a classic, and my list is endless 😂.
Favourite Movie: Oh that’s a difficult question, has to be Trainspotting.

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 two years now, (crikey) and Epilepsy Futures is approaching there fifth set of participants later on this year.

I am successful involved in a whole range of new, exciting and fully supported opportunities which has been opened to me through this incredible organisation.

After completing my time on Epilepsy Futures, it was suggested to me that I should definitely consider becoming a Volunteer Peer Mentor with group two of Futures.

I grabbed all these excited and worthwhile opportunity’s and I 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 providing awareness and reducing the stigma and discrimination of suicide and people living with mental health conditions.

I want people to understand that although life with epilepsy and mental health can be really awful at times, with the correct support, guidance and information, there is light at the end of the tunnel and we will all get there together. My experience has changed my life, and I want others to have that experience also.

Discovering that you have Epilepsy can be one of the most challenging and distressing moments an individual has to experience and face in life. You may feel frightening, nervous, worried, panic stricken or even hatred. I can assure you there is support out there and your never ever alone. I promise to everyone that there is people out there would do care. I have the most wonderful and supportive Epilepsy Specialist nurse and Epilepsy fieldworker.

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 and define you from 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. I have, i believed I was all alone, i felt that know one cared and i was always a burden and I would be better off dead, this is not the case now (well at times anyway)

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 wither it’s epilepsy or a mental health condition etc 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 mall absence seizures) as a child, where I experienced 300+ per day for seven years.

There is an explanation to why these shocking and terrifying seizures had came upon me at four years of age but let’s not get into that.

Unfortunately it is what it is and with a majority of individuals epilepsy just happens and we have no control over them. I have almost been seizure free for for nine weeks, I hate counting, not something I do but onwards and upwards.

Epilepsy certainly does not have to stop you from achieving anything you want. 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, amongst other life experiences. 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 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 (well kinda) 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 and people struggling with mental health issues.

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 being involved with 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 am now in part time employment at the moment, which I am really proud and excited about. My role is a Community Pioneer as part of the CO – OP business helping to bring communities together.

I am delighted soon to be published in the Humans Of Scotland book as part of Health and Social Care Alliance.

The photo shoot for the book took place last week in Edinburgh which was fascinating, interesting and an exciting experience. I am was extremely anxious about getting professional photographs taken of myself, the photographer made me feel comfortable and put me at ease straight away.

Our First Minister for Scotland Nichola Sturgeon has written the foreword for the book and myself and my partner have both been invited to the official book launch through in Edinburgh that we are both looking forward to.

I am honoured and privileged to be shortlisted in the top three for the Inspiration Individual Award at this years Self Management Awards as part of the Heath Care and Social Care Alliance. I am extremely proud, passionate and delighted of what I am doing and achieving. Thank you everyone at the Alliance.

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.

References: epilepsyfutures get – involved…

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Steven Connelly

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