Our phone chat #2 – Jordan

Maria: Hi Jordan, it has been a while since our last chat. Your mum proudly said that you are working hard in your job over this Covid-19 lockdown but that you would make time to share your epilepsy story with others. In these uncertain times, I believe that your story offers hope to those who are struggling with epilepsy and so thank you for agreeing to a phone chat.

Jordan: Well! You gave me hope when I felt lost and I now want to help others with epilepsy, even if it is by sharing my story. Here goes!

About eight years ago I had my very first seizure at work. I was about 18 years old and I was in a job that I loved: working on large steel ducts as an insulator. I remember being dressed up in a heavy white boiler-suit at work, high off the ground and…. That is all I remember! The next thing I was in the back of an ambulance, thinking, “What is happening to me? Why am I in the back of an ambulance?”

I went to the hospital to be told by the doctors that anyone can have one seizure in their life, but it didn’t mean that it was because of epilepsy. I was told that I had probably got too hot in my boiler suit at work. It didn’t help that I had also partied through the night. I hadn’t had much sleep before I went to work, and I had drunk a huge amount to alcohol, which I believe dehydrated me. But you know, I didn’t learn my lesson, I went back to heavy drinking, partying large and working really long hours. I worked all the hours I could because I wanted to own a house by the age of 25 years.

Maria: So, did you only have the one seizure, or were there more seizures to follow?

Jordan: The next seizure happened about a year later but, this time, I didn’t recover well. My seizure didn’t stop and so I was put into an induced coma. I believe that my seizure lasted for two days. On waking up, I felt really scared, especially to be told by the doctor that I couldn’t go back driving, do sports or continue with my wild lifestyle. If I did then I would die. One hundred percent, I would!

Maria: Goodness! How did you respond to that news?

Jordan: To be honest, I had a good cry. When I returned home it felt that my world had fallen apart and that I was in a huge hole from which I couldn’t climb out. I became unmotivated and I had bad thoughts. It didn’t help that the medications that I was put on made me feel really tired and I struggled getting out of bed to go to work but, I did, and the boss was really good to me.

I continued having seizures and I knew that, if I partied hard, that I would have a seizure the following day. Eventually, just before my 21st birthday I was diagnosed with epilepsy. But did that stop me from living wildly? No!

I knew that I couldn’t drink alcohol anymore because of my meds and so I started taking marijuana. Lots of it. Well, for the next two years I had about 30 to 40 tonic clonic seizures and I hung out with a group of turkeys who didn’t care, or worry about my epilepsy. I didn’t care either until one day, I saw the light. I had a hard look at myself and I didn’t like what I saw. I wanted better for myself. I wanted to own my house by the time I was 25 years, and so I quit my friendships with that group. You know, “you can’t soar like an eagle if you hang out with turkeys”?

I moved back home to be with family and it is here that my life improved. My uncle offered me a job in his butchery and I was given the hard word from him. I had to work, do as I was told and stay out of trouble, and I have. I love where I work. I absolutely do! I work in a small business and I am praised for my good work. I know that I am appreciated by the others and it makes me feel important. I have now saved enough money to buy my house or, I could also buy into my uncle’s business! I have much to think about.

I have also surrounded myself with good mates who are motivated and have goals in life. I go to the gym and that makes me feel really good. I have bought myself a new car and I am loving life.

On reflecting back on my life with epilepsy, I would like people to know that things could be worse than having epilepsy. I look at the brave faces of the very ill children who end up in Starship and I couldn’t imagine how they must feel. They are inspirational to me.

Oh! And one last thing. You must also take your meds regularly. That is so important. Medications are there to stop seizures and, you take them without drugs and alcohol! Believe me, the combination doesn’t work and you could end up having a seizure that doesn’t stop. I have been there and it is not fun!

Maria: Thank you Jordan for your honest chat. Continue to soar like an eagle and enjoy life! I have found this message for you. I know that you will like it.