Epilepsy Sparks

Finding Hope, Digging Deep and Moving On – Through Epilepsy Connections

Finding Hope, Digging Deep and Moving On – Through Epilepsy Connections

My name is Steven Connelly1, I am a Volunteer with Epilepsy Connections2 in Glasgow, Scotland3 and I am a Community Pioneer as part of the Co-op4; working to improve communities. 

 

Favourite Food: Scottish Fish Supper5

Favourite Song: This Charming Man6 - The Smiths7

Favourite Movie: The Godfather8

 

From Seizure Freedom to Tonic-Clonic Seizures

As a child from age 4-11, I would have 300+ absence seizures9 (a type of generalised seizure10) a day. Then, aged 11 I accomplished seizure-freedom! However, after 10 years, out of the blue at age 21, I just started having tonic-clonic seizures11. I felt like my life was over.

My Neurologist couldn’t explain why these shocking and terrifying tonic-clonic seizures came upon me. I hadn’t been feeling unwell at any specific time, nor had I suffered from any head injuries prior. Epilepsy can creep upon anyone at any age.

For many years I let my epilepsy hold me back. There were extreme periods of darkness and every day was dismal. Leaving the house was a massive challenge and I had to try and put on a brave face everywhere I went.

 

                           Me, in A&E after a tonic-clonic seizure

Epilepsy Connections Futures

When I found Epilepsy Connections and Epilepsy Futures12 in 2017 though, everything changed for the better!

Through team activities, education regarding epilepsy and overall self-development, I’ve now developed self-acceptance, confidence, and a bunch of new skills!

I decided that I wanted to help other people through my lived experience and after graduating from the programme a little over a year ago, a whole range of new, exciting and fully supported opportunities opened up to me; and I haven’t looked back since!

I now have a huge passion, enthusiasm and determination for supporting other people living with epilepsy and I strongly believe in the importance of delivering positive messages and training to individuals, vulnerable groups, and organisations regarding epilepsy.

I am honoured and feel so privileged to now be one of their Volunteers.


                                           Epilepsy Connections are amazing!

My volunteering projects now include:

Peer Mentor13

I became a Peer Mentor for a person in the next Epilepsy Futures group! I enable the person to maximise their self-management, learn and share their knowledge about epilepsy, and develop confidence with others. 

Epilepsy Connections Children and Families14

Every 6 – 8 weeks, we have fun with a different activity e.g. go-karting. During this volunteering, I help children with epilepsy and their families to access some quality time and fun.

Friends Connected15

I support the operation of a monthly social group run by Epilepsy Connections, called Friends Connected, which is for service users who would like to come out, relax and socialise for a few hours. People can make new friends and discover that they are not alone.

Befriending Service16

I have a befriended a person whom I support to engage in social activities such as: bowling, playing pool, lunches, employment support, and provide them with advice in accessing more support services including his local fieldwork service.

 

                    Just some of the work I've been doing with Epilepsy Connections

Diagnosis & Onwards

Discovering that you have Epilepsy can be one of the most challenging, distressing and life-altering moments an individual has to experience in life. You may feel frightened, nervous, worried, panic-stricken or even hatred. Mental health issues are more common in people with epilepsy because of things like diagnosis and having to cope with limitations but it’s critical to keep in mind that these feelings are common. It feels like the end of the world sometimes, but it isn’t. You aren’t alone.

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 varies from person to person and upon available support services17. For many there are so many incredible support services though. Never, ever give up.

 

Thank You Epilepsy Connections

Self-acceptance: I am remarkably proud of my life now. I’m not scared or embarrassed to leave the house with a worry that I’ll have a seizure or dislocate another joint. Despite not having control over my seizures I’ve discovered that I’m able to live a life of positivity, satisfaction, happiness and enjoyment. I’m so happy how Futures has taught me new skills and introduced me to people with whom I’ve developed an amazing support network and life-long friendships within the epilepsy community which are so important to me! 

My skills and confidence have greatly strengthened; I’ve been able to present workshops and be a guest speaker at a whole range of events that I would never have thought possible before meeting the organisation.

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

 

Conclusion

I’ve realised that life is far too short; I’ve got a life to live and I am most certainly going to live it.

All of my work with Epilepsy Connections has been and continues to be both extraordinary and inspiring. 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 want people to understand that although life with epilepsy can be really awful at times, it can get so much better with the right support and information. My experience has changed my life so much for the better, and I want others to have that experience too. 

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      

 

References

1.        The Steven’s Deliberation blog: https://thestevensdeliberation.com/

2.        Epilepsy Connections: https://www.epilepsyconnections.org.uk/

3.        People Make Glasgow: https://peoplemakeglasgow.com/

4.        Co-op: https://www.coop.co.uk/member-pioneers

5.        Wikipedia: https://en.wikipedia.org/wiki/Fish_and_chips

6.        The Smiths: https://www.officialsmiths.co.uk/tqid/

7.        YouTube: https://www.youtube.com/watch?v=cJRP3LRcUFg

8.        IMDb: https://www.imdb.com/title/tt0068646/

9.        Epilepsy Foundation: https://www.epilepsy.com/learn/types-seizures/absence-seizures

10.     Epilepsy Foundation: https://www.epilepsy.com/learn/professionals/about-epilepsy-seizures/classifying-seizures/generalized-seizures

11.     Epilepsy Foundation: https://www.epilepsy.com/learn/types-seizures/tonic-clonic-seizures

12.     Epilepsy Connections: https://www.epilepsyconnections.org.uk/epilepsy-futures/

13.     Epilepsy Connections: https://www.epilepsyconnections.org.uk/peer-mentor-training-session-30th-april/

14.     Epilepsy Connections: https://www.epilepsyconnections.org.uk/services/activities-for-children-and-families-affected-by-epilepsy/

15.     Epilepsy Connections: https://www.epilepsyconnections.org.uk/services/friends-connected/

16.     Epilepsy Connections: https://www.epilepsyconnections.org.uk/services/befriending-service/

17.     Epilepsy Sparks: https://www.epilepsysparks.com/Other-organisations

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