“Bloody Epilepsy”

14184397_10155201251259502_3016113690683783818_nMy Son Charlie had his first fit at nursery school when he was 4 years old, the Dr thought that maybe it was connected to the fact that he may have had a fever from a cold he had had so I took him home relieved that he was OK and not expecting that day was going to become the start of a life long battle for Charlie.

Fits came reasonably regularly from then on but I never saw him have a fit for a long time as he always had fits when he was at school, school used to call an ambulance and call me at work and I would go to the hospital. He was put on Epilim and once we had the dosage sorted things settled down.

As the years went by he would have the odd fit but basically his fits were well controlled with a reasonably small dose of medication, the Dr’s were confident that if we could keep him fit free for two years there was a reasonable chance he would ‘grow out’ of his epilepsy, I hoped so, having epilepsy as a child is one thing but having it as an adult is a whole other ball game there could be implications for him when it came to driving, what jobs he would be able to do, his mental health, it was scary.

I tried to not let his epilepsy define him, I wanted to see the lovely blonde haired quiet boy first and not the epilepsy,  I sometimes wonder now if maybe I did the wrong thing, maybe because we didn’t make a big deal out of it when Charlie became responsible for his own medication when he got older he didn’t treat it maybe as he should.

We managed to keep him fit free for two years just at the right time so when he was eligible to apply for a learners drivers licence the Dr signed him off and allowed him to do so but sadly some time later he had a massive fit and the Dr revoked his right to drive, we were so disappointed, poor Charlie I think this was the start of him beginning to hate his condition, when it started to effect what he wanted to do, he tried to get a part time job but of course had to divulge his condition to potential employers and as soon as they saw that he had epilepsy they would give the job to the next young person who didn’t.

I used to drive him around from from place to place while he handed out his resume to dozens of workplaces but no-one would give him a go, he began to spend more and more time in front of his computer and less and less time out with friends.

School finished and he went to TAFE to study computers but I think he was already kind of lost, given up on any aspiration he may have had, in his mind if he couldn’t even get a job in Macca’s whats the point? He went through the motions for two years but he didn’t apply himself and didn’t really enjoy the course’s he did. I tried to figure out what how to motivate him, what we could do to get him to feel more motivated but he was a quiet kid, it was hard to get him to open up. So he fell into the stay up half the night on the computer, sleep all day cycle. By this time he was 19 – Centrelink wouldn’t give him any payments because he was still living at home, it wasn’t so much that I wanted Centrelink to give him money, I just thought that if he getting a government payment it would open up extra support for him as a young person with a disability to help him get a job.

By now he was still having the occasional fit, mostly due to him not taking his medication – while he was still living at home I was no longer responsible for actually putting his meds in his hand twice a day, all I could do was ask the question, “have you taken your meds?” to which I would get the automatic “yes” response. I didn’t know what to do, he was well and truely in a rut, I used to ask him nicely to take a look at his life, I used to yell at him to take a look at his life, I used to cry at him to take a look at his life but it didn’t make any difference he had given up.

My Husband & I separated and Charlie moved out to live in a share house with friends, I think he really loved it, he was finally able to get a payment and part pension from Centrelink and even though it wasn’t much he was able to live independently, I worried about him, I knew he wasn’t taking his medication properly but what could I do?  There had to be a point when he became responsible for his own health, of course I worried about him all the time, I knew he was still having fits but a lot of the time he wouldn’t tell me, one time he ended up with stitches in his head after falling while having a fit and hitting his head on the corner of his desk, luckily a friend who he was taking to on the computer at the time called an ambulance and he was taken to hospital.

At 22 Charlie decided to move to Melbourne – a fresh start with more employment opportunities, I was so happy for him, he seemed excited about the future for the first time, he had some friends in Melbourne and found a place to live sharing with some other people, I cried, and cried and cried at the Airport and he had a little wobble and nearly didn’t get on the plane but he pulled it together and off he went, I was so proud of him that day and was so excited that this would be the time for him to shine.

He loved Melbourne but sadly that elusive job didn’t materialise and he fell back into the online gaming staying up half the night, sleep all day cycle, but he enjoyed Melbourne and loved his friends there, I’m pretty sure he was having reasonably regular fits but didn’t always tell me when he did, The people he was living with were moving and he had to find somewhere else to live and so he decided to come back to Cairns.

I think pretty much as soon as he came back he regretted it, nothing in Cairns had changed, his mental health was taking a dive but getting him to talk to me was nearly impossible, all I could do was offer him my support and try to keep an eye on him as best I could. He started to open up a bit more admitting that he was depressed and had anxiety and he decided to go and see my Dr. Dr Andrew, what a wonderful young Dr!!! He listened to Charlie, took him seriously and took it upon himself to get Charlie back on track, Charlie had blood tests to check his medication levels, got him on some meds to help with his depression and referred him to see a therapist.

It was a bit tough in the beginning, but he soon began to feel the improvement in his health – both physical and mental, and while Dr Andrew was doing a great job looking after his physical health  Liz was doing a great job helping him with his struggles with his mental health. I was so relieved – he was opening up more, he was feeling better, making decisions about his future, making a plan. He was seeing them both regularly and had started a work for the dole programme at the Salvos, so for the first time in years he had some real structure in his life, he had to go to work every day, he like the people he worked with and they liked him, he carried on seeing Andrew and Liz and I was so hopeful that he was turning his life around, doing it himself, not waiting for someone to do it for him.

Then came the day I couldn’t get hold of him either on Facebook or on the phone, call it Mother’s intuition if you like, but I felt there was something wrong so I decided to jump in the car and drive over to check on him, when I got there his housemate answered the door and said she didn’t know if he was home as she had not long got in from work so i went and knocked on his bedroom door, no answer, so I opened it and he was in bed with his back to me and he just looked asleep so i went to shake him to wake him. He was cold, too cold and that very second my world stopped turning and my life changed forever.

We are still waiting for the final report from the Coroner, but the paramedics and the Police who came seem reasonably sure that he had a fit in his sleep, but we have to wait and see I suppose, there is a chance it was SUDEP (sudden unexplained death in epilepsy) but we may not know for a while yet, it can take up to twelve months to get a cause of death.

I wish I had decided to make a bigger deal of his epilepsy as a kid if I had maybe he would have taken it more seriously as an adult but I thought I was doing the right thing by trying to not make a big deal out of it but what it seems I managed to do was make Charlie think he didn’t have to take his meds and look after his health, but hind sight is 20/20 isn’t it. I think that if he had found an employer to give him a go when he was a teenager would have made a huge difference too.

I miss Charlie so much, his quiet dry humour, the way he called me ‘Ma’ and not Mum, his funny Facebook posts. I miss being a Mum.



10 thoughts on ““Bloody Epilepsy”

  1. This blog gave me heaps more insight into how you must feel Rach. It’s a heartbreaking story. We can always look back and see how we might change things but a mothers love and intuition are very strong. Despite the illness and his depression I believe Charlie had his own destiny to follow but I am sure he knew how much you loved and supported him and at the time you did the right thing with his illness and your loving support. We can only give that love based on love and our own knowledge and support. We are not experts in child development and you led him to the right supports. You cannot know what more or less you should do. You shared much love with Charlie. You are a wonderful loving Ma ❤️


  2. A great insight to Charlie and life. He did sound like a typical teenager/young adult with his attitude but add the epilepsy of worry. A great read, thank you for sharing and helping us to see. Loads of hugs.


  3. I was glad to read this and find out more about Charlie. I hope you are not left waiting too long to find out the cause.
    There are always those ‘what ifs’ in life, but just focus on the wonderful times you had with Charlie and the memories you have to cherish.
    Anxiety and depression are an awful thing to live with 😦 it is a constant battle with yourself everyday, but it sounds liked you got him the help he needed and that he was benefitting from it.

    Lots of love Rach and i look forward to your future posts and adventures xxxx


  4. I remember when Charlie made his moves. He told me a lot of what was going on in his life, via World of Warcraft, I was happy to have him open up to me online. Even though playing video games all night and sleeping all day is hurtful to your social life, I just hope it helps you know that he was always amongst friends, and was loved in the online community we had. His love and story has reached across the World! I wish I could hug you and tell you how great a job you did raising him. He spoke of you every once in a while, always love. He was my best friend. And I’ll hold his memory in my heart. Thank you for sharing this story, his story.


  5. It’s nothing you have done wrong, Charlie was being a typical teenager when I was growing up my parents tried to steer me in the right direction but I wanted to do things my way, it was only later in life I understood what they were trying to do, so don’t blame yourself you are a great mum and I think Charlie would say that as well, I was only there for small parts of his life but it doesn’t hurt any less I’m still proud to call him my son and will always love him xx


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