Just over nine months ago I had two seizures, was hospitalised and diagnosed with epilepsy. It was the most terrifying and horrible two days of my life. I had no idea what was going on, what was happening or how I was going to cope with this. I remember sobbing in the hospital bed because the Sydney reputation concert was that night and my neurologist didn’t want to release me, because she was worried I have a seizure and wet my pants whilst singing in the snake pit. I remember seeing my dad cry when he thought I was asleep and my mum pleading with the nurses to let her sleep in the room with me. I remember my boyfriend calling his parents and crying to them over the phone after the doctors told him that he needed to do a first aid course so he knew how to react when I seized. I cried when they let me go to the concert and cried during the show, I cried the next few days as I returned to the hospital to do multiple tests. I cried four days later when I was picked for rep room at the Brisbane show.
It’s been a long, hard road since then and it’s taken a huge toll on me both physically and mentally. I have multiple seizures a week, sometimes multiple per day. I take ALOT of medication and I am constantly doing tests at the hospital. My doctors now also think that I have severe issues with my heart and that it may be impacting on my seizures. My anxiety that I’ve been battling since I was a little girl has become even more dangerous, as it triggers multiple seizures. I just went on holidays to Europe (that in itself was hard enough), where I had a seizure whilst on the toilet and my mums cousin had to bust down their bathroom door and help me whilst I was naked. I’ve never felt so humiliated in my entire life. I also can’t drive or drink any alcohol or stay up too late or eat certain foods or go to certain places. I have to be careful working and I have to constantly see the disgust and pity on people’s faces when I explain my problem. I have to be careful at concerts or in crowded spaces and I have to carry a spare pair of undies with me everywhere I go.
@taylorswift I just want you to know how much you’ve helped me during this time. I know my journey isn’t over yet and it’s just begun, but meeting you happened when I truly needed it the most and your music has been there supporting me this whole time. I will not ever be able to explain how much you and your music means to me or what it has done, but please know I will forever be grateful.
To everyone who has epilepsy, I love you all. We’ve all got this. I know how hard and embarrassing and frustrating it is, but we’re all in this together and I’m always here. We will get past this and we will not let this define us. I’m still trying to have fun (like jumping in front of the lourve) and I’m still trying to live my life as best I can. I will not let my disability define me. 💗💛💪🏼
jacobvanloon
theartofmadeline
jbbartram-illu
tangentwithtanner
kaledo-art
andulkaphoto