How I've Experienced Epilepsy and Independence

Hello again wonderful people! Today I wanted to talk about independence which is something I’ve talked about before. This time though, it will be the sole focus of my ramble. The feeling of not being as independent as I would like to be is something I have struggled with continuously as I have grown up, and as I get older it has only gotten worse. Any young child is pretty much totally dependent on grown-ups to help them through life, whether they have epilepsy or not. This meant that when I was little, I really didn’t notice too much difference between myself and my peers. There was little difference apart from me being the only kid in my swimming class to need 1:1 supervision in the water. As a child I lacked independence anyway, so my epilepsy didn’t change much. This was helped along by the fact that my parents were determined for me to have as “normal” a life as possible. Things only started getting more complicated as I got older and I started sticking out like a sore thumb.

When I reached about 10-11 years old and gradually my friends were being allowed to walk to or from school or they were allowed to go to the park by my primary school and I wasn’t allowed to go and join them. I was limited in what I could do because I needed adult supervision and apparently as a pre-teen having your parents tag along with you to the park isn’t cool or something… I wasn’t allowed to go into town unless my bestie who knew how to manage my seizures came with me. This gradually changed as I got older and made it through my teens but I was always behind my peers in what I was allowed to do, whether it was staying home alone or catching a bus by myself. When throughout your teens more and more independence is being heaped on you and you are always a good couple of years behind your peers, that was difficult, to say the least. I didn’t like having to turn downtime with my friends because I needed supervision, or I couldn’t get there. That was tricky and felt like the whole world at the time because it was so embarrassing, but in hindsight I know why it was necessary and have made my peace with it.

Even now, if I’m feeling twitchy, I will ask for lifts places or make sure that there are other people with me who know how to manage my seizures, whether it’s Michael, friends or family. If I’m feeling bad, I have been known to make sure the whole bus journey I am on the phone so that someone at least knows if something happens or that I’m not home alone. If things get bad at home even simple things like walking and eating become complicated and over the years I have developed routines and environments to help make things like that easier, but I do still sometimes require my family’s help.

I have grown up with the knowledge that I won’t drive. In my friendship group, driving was a symbol of independence. I suppose I always dreamed of driving when I was little but then reality hit when my brother started learning and I realised that I wasn’t going to be able to do that. I would love to be able to just take myself from A to B, but I had time to adjust to that knowledge before I got to an age where I would be driving. I miss the independence that driving would give me, and while it can be frustrating, I know that it’s safer for the rest of the world that I don’t so I’m happy with my free bus pass!

Whilst public transport is great, the knowledge that I am on my own and I could start seizing at any given moment can be scary and anxiety-inducing. When things were really bad a couple of years ago, I struggled to leave the house because I was so worried about being out or on public transport by myself. Whilst I wanted to be independent, I had no guarantee that if I did seize on the bus or walking down the street, that someone would know how to respond. This led to me arriving to shifts at work 3 hours early for example because I would rather depend on family for lifts when they could give them to me than catch the bus. I am now much more confident in public. I have a wristband that highlights the fact I have epilepsy as well as something called a MedicAlert necklace. This means that if I have a seizure in public and 999 is called paramedics can get hold of my medical history and allergies etc. These make me much more confident being out and about by myself.

I won’t deny that being independent is scary and I still haven’t lived away from my main support network yet, so I don’t know everything about living independently. I am currently preparing myself to live independently for the first time, but when I was 17/18 and thinking about the prospect of university, I was not prepared for that. I was still working on making sure I got my meds on time from the pharmacy. I was only just realising how co-dependent on my family I was, so I definitely wasn’t ready for independence.

I know that God has put people in my life for me to rely on and he has massively blessed me with the people he has given to me. I am also grateful for the tools that he has given me that enable me to have just a bit more independence in my everyday life. I know that God will continue to lead and guide me in everything I do and that he is always with me. Ultimately whether I am able to be totally independent or whether I remain dependent on others for help in this life, it doesn’t matter because I know that it is far more important for me to be being dependent on God, as he is the one who carries me through.