How would you feel if for 10 years of your schooling, your teachers labeled you as a slow learner and put you in remedial classes and labeled you as having emotional disorders, when really you are highly intelligent, creative, and self-controlled? The only problem was that you have Scotopic Sensitivity Syndrome, also known as Irlen Syndrome, where the slightest ray of light gives you a splitting migraine headache for days and black print on a white page swirls and jumbles and vibrates like Dyslexia on a Really Bad Trip.
This is the story of Miss X, a 19-year-old somewhere in the United States, who has the worst case ever documented of this syndrome that most people don’t even know exists. She lives in her bedroom with black-out curtains over the windows. The walls and ceiling are painted a dark blue. If a housemate forgets and leaves the white nightlight on in the bathroom, Miss X would get a migraine from even that weak beam when she went to take care of her necessities.
Once she was a martial arts champ sparring with full contact and throwing big sweaty men to the mat in triumph, but, as her light sensitivity worsened, she not only missed the camaraderie of those stinky guys, she missed being able to exercise her once strong muscles.
Alone in her “cave” the Internet connects her with friends and teachers as she continues her studies at her own pace. A driven artist, she loves to hone her craft, but a few hours of concentrated work can trigger a migraine that lays her low for days.
With no sunlight entering, day and night lose their meaning. Days blur one into the next. But Miss X has learned to maintain a cheerful spirit even in the face of all the obstacles and excruciating physical pain that her severe disability presents.
Most people who have this condition experience much less extreme symptoms. Children with this disorder are often misdiagnosed as having a learning disability or dyslexia. Irlen Syndrome is believed to originate in the retina of the eye or in the visual cortex of the brain.
If you would like to take a self-diagnosis test or see a sample of how printed text can appear distorted for people with Irlen Syndrome, you can visit Irlen.com. Often, using special colored filters or tinted glasses can greatly improve the quality of life for the estimated 12-15% of the population who suffer with this condition.
For more severe situations, like that of Miss X, she and her caregiver request that you open your heart to people suffering from this or any other disability and offer your empathy, and don’t tell them to just “get over it.”
A closing quote from Miss X herself – “I am happy you are willing to write my story and share it with others. Hopefully it will give some insight … and get the word out that what I have does exist. Maybe somebody won’t come to judgments as quickly as many did with me, by reading this article — which is all I could ever ask for.”
Powered by Sidelines