“It only takes a few seconds to respond to a text message.”
“It’s not hard to send an email.”
“All our applications are online now. Go to our website.”
“We now only have self-serve checkout options.”
These are just a few of the comments I hear every day of my life - comments that absolutely frustrate me. Comments that make me feel isolated and ostracised from today’s society. I spend most of my time explaining to people why I am unable to keep in touch with todays ‘wondrous’ technology and every time, I feel that my message is either not heard, or belittled due to lack of understanding of my condition. After all, how can sending a text message be life threatening? What a load of codswallop. Well I’m here to tell you it is not rubbish. It is real and this is a world I have no choice but to live in.
Today where information is easily accessible, where almost every person on the planet has either a phone, a computer or access to the internet, having a medical condition that is triggered by lights, vibrations and sounds is debilitating, lonely and for me, life threatening.
Responding to a simple text message of ‘Hey, what you up to?’ Can land me in hospital. Looking at a computer screen, tablet or mobile phone gives me a headache on the best of days - on bad days, I get severe migraines that can cause seizures, forcing my muscles to contract so intensely it causes torn muscles and ligaments that will never properly heal. On rare occasions my seizures have caused me to stop breathing and without the quick actions of medical staff, I would not be here today to tell you about this.
Computers, phones, televisions and tablets only scratch the surface of the problem for me. I have become bed ridden simply by collecting the mail before sunrise and seeing the rubbish truck with it’s flashing orange light whirring around. The vibrations of someone speaking over a telephone speaker requires at least one anti-migraine pill beforehand. The sudden noise of someone calling out in excitement can create such an intense headache I am out for the count for a few days.
This condition forces me out of society. I am unable to go out to places where there are a lot of people, loud noises, flashing lights, or even just fleuro lights. I struggle going to shopping centres due to their lighting, the large advertising screens and all the other potential dangers (such as the laser on the checkout scanners). I am unable to talk to someone on the phone unless I’m having a ‘good day’, nor am I able to respond to texts, emails or any other electronic forms of communication and I am learning the hard way that people don’t just pop round for a visit anymore. They text first. So I rarely get visitors either.
Grocery shopping is a struggle. Much of the time I am unable to go out to a store, but with today’s awesome technology, I can order my groceries from home - via a website!
Phone books are now a thing of the past. Today if you need a phone number, you look it up on Google. So for me to contact disability services to ask for help with dealing with all these challenges with technology, guess what - I have to google the number. Then, to make things easier, they email me the paperwork to fill out to get their assistance. Are you beginning to feel the frustration yet?
I love reading, because it is one thing I can do without getting sick. With the current tax laws and changes with Amazon, a lot of books I am unable to get in paperback version, but lucky for humanity - you can buy the e-book for a third of the price. Yeah great!
Thats okay though - I still have my writing. Nothing beats a pen and paper. I have many manuscripts and snippets of writing that I would love to get out there, but guess what… To send in a manuscript these days, you e-mail the publisher!! So now I am stuck with a lot of work to do - I must struggle with headaches to the point of being in almost constant blinding pain, just to type out my manuscripts onto a computer, then research publishers (because I can’t get a book on it anymore - all research is done online), then fill out an application form and keep an eye on my email for a response.
It has taken me over a year to type out half of one of my manuscripts and in that time it has caused me much pain, not only with headaches, but with seizures that have caused irreparable damage to my body.
This is what life with photosensitivity is like. Every ‘simple’ task becomes a huge ordeal that can be life threatening.
Right now I have 124 unread text messages, 3,275 unread emails and 435 social media notifications. I don’t know who they are from, what they are in regards to or whether these messages should be deemed as ‘important’ or not. I do know that my life is not worth risking for any of them, so they will remain unopened, unread and unanswered.
I do have a mobile phone, an email and a social media account (and of course, a website) because without these things I cannot integrate into society at all. I can’t even book a doctors appointment without responding to a text message sent to my mobile phone. I am unable to get assistance with disability services, without responding to an email they send me. I am unable to get anyone to read my work without social media or a website - so for me, these things are an unfortunate necessity.
General conversation and chit chat via electronic means is not a necessity and I am therefore unable to participate. Please be understanding and appreciate that every electronic interaction for me is as hit and miss as texting while driving is for you.
I am not asking for the world to change. I am merely asking for consideration when interacting with people with photosensitivity or having expectations of me that would seem ‘normal’ in todays modern world.
If you know someone who has photosensitivity who is looking for a way to reach out and communicate with a like-minded person who understands what they are going through, please don’t send them an invite to read this website, email me or connect via social media. Instead give them my P.O.Box address and invite them to write me via snail mail. It is essential that people like us stay connected, even if it means we're stuck using an 'old' system.