Becoming a chronically ill person is a process, not an event. Learning how to accept and live your life in a way you never thought you’d have to is a big challenge, and sometimes can take years to work out. I wrote this post about performing for the National Epilepsy Foundation, and since many Lupus patients experience seizures I am re-posting it here -
I had been working as a jazz vocalist in NYC and Chicago for several years when I was diagnosed with Epilepsy. I was in my early 30′s and I found the diagnosis terrifying. I had never experienced seizures before age 33, and they started happening because I had Lupus, a genetic auto-immune disorder, which had come out of remission at that time. It actually took about a year to have the seizures properly diagnosed, because I started having small seizures, called simple partial and complex partials, which aren’t so obvious the way “grand mal” seizures are. I was having momentary black outs that felt like like dreams or sleep attacks… I would be driving, or going about my day when I would have a strange feeling of deja-vu or dreaminess which would last about a minute or so… or I would just feel like I was falling asleep where ever I was. I usually experienced fatigue with the Lupus, but my family doctor didn’t think it was just a case of being tired, so he sent me to the Mayo Clinic for diagnosis. When I was finally diagnosed there, during a 5 day EEG in the hospital, I was very relieved to learn that I wasn’t going crazy, but that the “spells” were seizures. I tried several epilepsy medications and over time the seizures became well controlled, but for a few years I was absolutely terrified to perform or get on stage, so I just quit working. I stopped singing because I was so afraid I would have a seizure in front of people, and my soul dried up and died.
I am sure that many of you with epilepsy can imagine the terror of it. Being on stage in front of a group of people and losing control of yourself while everyone watches. I felt inept and flawed, and thought that no matter how well I could sing, nobody would want to ever see me in a show or concert if they knew I had epilepsy. In fact, I stopped even going out with friends and doing things in public because I was so afraid of what people would think of me if I had a seizure in front of them. I had never seized in public before, because I always experienced a 20-30 minute aura before each seizure. The aura is a period of time where you feel sick to your stomach or dizzy with a headache, and it’s kind of like your body’s natural way of warning you that you’re going to have a seizure later. When I start to notice the symptoms of aura I usually get out of the public place I am in, and get to a bed or a soft couch where I can have my seizure eventually. But even with this great, built-in alarm system, I was still socially paralyzed. My husband and close friends tried for a few years to talk me into getting on stage, and they never gave up on me. They reasoned that I would always get a warning, so I could get off stage in time to go somewhere private and safe to have the seizure, but I was just too afraid.
After a few years of taking epilepsy medication the seizures lessened in frequency and severity, so I started recording music again. I had missed singing so much, it was like a part of my soul was missing the whole time I was sick. It wasn’t scary to be in a recording studio with just a few people, so I recorded 2 jazz albums over the period of 2 years. When I finished them, my friends eventually talked me into have a CD release party at a jazz club in Chicago, and I started seeing a therapist so that I could talk to someone about my performing fears. It took almost 10 years to get me on stage again, but last year in July 2010 I had a CD release party for one of the recordings at a well established jazz club in Chicago, and we had 88 people show up! It was pretty scary being up there in front a big crowd like that, but I got through the evening with no seizures or auras, and a happy audience who enjoyed the show and bought lots of CD’s. I perform regularly now in Chicago, and I’m not afraid anymore. I have never had a seizure while working, and even if I did, I know that I am lucky enough to have auras first, which afford me about 20-30 minutes of escape time. I always work with top-notch musicians who know me well and would cover if I needed to leave the stage at any time, but it hasn’t happened. I am also very careful not to drink alcohol or use any substance that might irritate my condition, especially while working, and I feel very confident now that I am healthy enough to work again. I am so glad to have my life back after 10 years off of the stage. Epilepsy can rob you of your freedoms in so many ways, it’s always a victory and a blessing to get them back.
http://epilepsyfoundation.ning.com/profiles/blogs/stepping-out-of-the-shadows
