In April of 2023, Michael Mulcahy from Cork was diagnosed with epilepsy. Michael was 55 years old and is living proof of how epilepsy can affect anyone at any stage of life, at any time. While it can be a process for many in becoming open about their epilepsy, Michael, despite being early in his journey with epilepsy, immediately realised the importance of being open and honest about the condition and took to social media to share news of his recent diagnosis with his friends, family, and colleagues. The below is an amended version of those posts, that Michael has shared with us...
Regardless of how worldly wise we are or feel we are, regardless of what age we are, or regardless of what we have or don’t have in life, there are certain things in life that when they happen to you that you have to decide on how to deal with them. Every one of us faces these decisions on the journey of life and some are minor, and some are major.
For the many people that I am privileged to call friends, they will know that sharing things in life is often for me more about the positives than the negatives. If sharing something about myself can help someone else, then happy days in my world!
At 6am on April 22nd at home while in bed, I experienced an issue that I now know that I was fortunate to survive – thanks to the quick thinking of my husband Jonathon and the incredible response of the emergency services.
While at that point we didn’t know what had happened, in consultation with my GP, it was very quickly decided that we needed to know more. Just a few days after the incident, a barrage of tests and procedures at the Medical Assessment Unit of Bon Secours Hospital, Cork followed. Initially, we had thought what I had experienced was cardiac – but a visit from my neurologist set out more clearly what the line of thinking was.
None of us are ever really prepared to hear something that hasn’t figured in our mindset before, that is relatively new to us and that takes the wind out of our sails because of elements of it. And yet, being told that ‘this can be managed’ doesn’t quite hit the mark that you want it to hit when you hear it first.
My neurologist sat with me and explained that the ‘issue’ that I experienced was an epileptic seizure, and a severe one for a first-time full seizure as it lasted for up to or longer than 30 minutes. Again, and as I’ve said above, I was lucky that Jonathon was next to me and acted as he did on that Saturday morning.
My neurologist spoke at length to Jonathon about what had happened before he gave us his diagnosis. He told us how he feels that my condition can be managed with Anti-Seizure Medications and explained that as with all new medications, it’s a bit of trial and error to see how they suit me and to see which (if any) of their side effects might affect me.
I know I will have to make some changes to my lifestyle and some change of stress levels and other things and looking on the bright side of this new part of my life, perhaps that’s not a bad thing in hindsight.
From sharing my posts on social media about epilepsy, I’ve been taken aback by just how many people there are living with epilepsy – and I’ve learnt more about the misunderstandings and stigma that still unfortunately exists. I’ve been through Epilepsy Ireland’s website and been in touch with their services as I know I’m early on in my journey and may need support and information in the time ahead.
In those early days post-diagnosis, I discussed with Jonathon on how to approach this diagnosis and we quickly decided that I’d be as open and honest with this news and diagnosis as if this helps someone else, then it will be worth sharing. If you’re at the beginning of your journey like me, know that you’re not alone – and that there’s over 45,000 people like us across Ireland. Reach out to the team at Epilepsy Ireland for information and support – that’s what they’re there for!
To conclude for now, it’s been an eventful, frightening and emotional time since my diagnosis, but I’ve been surrounded by support and love at every point when sharing my news and I’m hugely grateful for that - and even more grateful to be still here to tell the tale, as I know now that so many people who have experienced my type of sleep seizure sadly haven’t come through them. I want to take this opportunity to thank my husband Jonathon, my family, friends, and colleagues for all their support. No doubt I’ll need a bit of support and encouragement from people who care, who listen and who find time for others in the months and years ahead, which is why I felt it was so important to be open about my diagnosis from the outset. Equally so, I want to be there to support anyone that experienced something like I did, because once you come through it and can have it managed, life can reposition itself.
Thank you for reading, and I hope my story was of some help to someone out there!
Thank you, Michael, for sharing such an important message at such an early stage of your journey with epilepsy – we have no doubt that your words will be of huge support to many people in a similar situation to you. As Michael said, if you are newly diagnosed – or if you need any support on your journey with epilepsy – get in touch with our team; we are here for you. You can find details of your local Community Resource Officer by visiting the 'Our Local Service' section of our website.