Interview for Frai Magazine from August 2016

My name is Akira Lopez and I am from the northern beaches of Sydney, Australia. I’m a teenage girl greatly immersed in art, film, music and poetry.

I started modelling at around 5 years old. My dad is a graphic designer and he was informed that Donna Hay was looking for kids for an editorial shoot and gratefully I was chosen for it, ever since then it has been a hobby of mine. Last year FiveTwenty Mgt scouted me through photos of me on Instagram that my photographer friend Lauren shot. Although I am quite self-conscious, I have always had fun with being in front of a camera knowing that I am contributing to creative vision.

 

I am a narcoleptic and I was diagnosed 2 years ago but I have suffered from it since 2013. 

Narcolepsy is a rare neurological disorder that debilitates the brain’s ability to regulate sleep patterns. I take Modafinil, a stimulant that relieves my chronic fatigue but unfortunately does not eliminate all of my ‘sleep attacks’. To break it down into a simple context I can fall sleep at any given time whether it be at random or even triggered by high emotion such as laughing or crying. 

Nobody or anything can wake me up from these episodes, as I have to rouse on my own device. My REM sleep begins in under 10 minutes and for the average non-narcoleptic it takes 1 and a half hours to enter this state of sleep. My episodes can last from 5 minutes to 3 hours.

My condition has a terrible and draining impact on my day-to-day routine but I try my best to push forward and take the challenge on with a grin. I have fallen everywhere and anywhere you could possibly think of, I remember jokingly talking about it with my mum and saying,

“I really think you should buy me a helmet”.

I was hospitalised early last year for a concussion after passing out on the toilet and sleeping for 18 hours. There is a real stigmatisation around narcolepsy. The amount of people that have ostracised me about falling asleep uncontrollably is disappointing and totally demeaning to narcoleptics. The main contributor to this misconception is ignorance that has been enforced by pop culture and a 2001 film ‘Rat Race’ an entirely uneducated depiction portrayed by Rowan Atkinson.

After hitting my crown so many times I guess I have become pretty “head strong”. Jokes aside, I suppose I haven’t given up because I have no control over my bad days and I have taken it into my own hands to possess an optimistic attitude. I really feel as if I appreciate smaller victories like making it to school on time or being able to shower without anxiety. Peaceful situations have given me hope whether it be a warm hug with my dog or a party under the stars surrounded with my loved ones, it makes the world of difference when you find simplicity in life. I won’t ever let narcolepsy consume me but I do understand it is not going to go away anytime soon.

Problems fluctuate depending on time but one thing is for certain though and that is there will always be the dullest of moments but you are who you are, flaws and all and nothing can get worse it can only get better. No matter how hard you are battered and bruised, be proud of handling that pain even though you would give anything to take it away remember that you are so much more than your illness. Find happiness in your virtues.

I hope that I can be stably independent after my HSC. At the back of my mind I am terrified about adulthood and being burdened with even more responsibilities but I know I am capable at achieving most of my aspirations. I want to study media and communications at university and then direct, shoot and produce documentaries about urban anthropology. My biggest goal is to travel the world and surface a media platform for people whose rights have been violated and voice their struggle and encourage change. I still want to model and act but in all I just hope I can stay upbeat.