How To Choose a New Phone When You Have Photosensitivity

I have been researching getting a new phone for some time.  I thought I had thought of everything, studying all of the technology specifications and comparing over a dozen phones side by side.  Ultimately, I chose the Motorola G5 Plus, which had the newest version of Android and lots of other interesting functions.  I had been a Motorola customer for nearly four years, so it seemed like a great fit.  Unfortunately, not even ten seconds after I turned it on, it started flashing uncontrollably and gave me a migraine- strobe and flashing lights trigger migraines for me.  It wasn’t just the opening screen that strobed either- there were several other ways that this phone was capable of triggering a migraine for me.  After an hour on hold with Motorola customer support, I was told there was nothing I could do to disable these functions and I should just return the phone.  All of the new Motorola phones also have this strobing display, so now I am left to research another phone.  Here are five things I will be looking for in this new phone, things I didn’t even think to look for before.

Turn the phone off and back on again

What does the startup animation look like?  Is it a flash of lightning, or rapidly changing colors?  What about fast moving images?  Any of these can be a trigger for a migraine, seizure, or other medical issue.  I would have someone else who knows your condition check this for you so you aren’t hurt by the display.  After I first saw the flashing display yesterday, I had two of my close friends who are familiar with my condition look at the animation, and they agreed it was very unsafe for someone with photosensitivity.

Strobing notifications

One of my friends has a phone where the flash on their camera creates a strobing effect whenever they receive a call, text, or notification.  If you purchase a phone with this function, make sure it is not enabled by default to start strobing for notifications.  Also, if you have a friend who uses this function, kindly ask that they disable it when you are around, because it can cause you to have a medical issue.

Does the screen flash when you zoom in?

When you double/triple tap the screen to magnify, does the screen do a short strobe animation?  Most animations can be disabled on a phone, but some models may not allow this strobe effect to be disabled.  It’s also worth checking to see if the phone screen strobes for other gestures, or when apps are opened.  Sometimes you can change what animation displays, so you can choose something that isn’t a strobe effect.

Color filters

If your eyes have trouble processing bright lights or colors, check to see if the phone display supports adding a color blindness mode or light filter.  I have a filter on my current phone that filters out very bright lights without affecting the color display.  I also use night mode on my phone when I am dealing with a migraine- this is a red-pigmented filter designed to block out the blue light from the phone display.

 

Does the keyboard flash?

When typing, does the phone keyboard create a strobe or flashing effect?  Luckily, keyboards and other third party apps can easily be replaced- check out my post on how to make Android accessible here.  However, it may not be worth the hassle if there are so many other flashing lights on the phone.

 

It’s rather unfortunate that an increasing number of phone manufacturers and companies have been adding flashing lights to their designs.  With more and more people being diagnosed with migraines, epilepsy, and other photosensitive conditions, it is more important than ever to remember one of the most important rules of web design- don’t create anything that can cause a seizure.  I hope in the future, companies will stop using strobe and flashing lights in their designs, but until then, the search is on for a new phone.  As sad as I am to leave Motorola, I can’t risk triggering a migraine just by using my phone.

Having an Undiagnosed Chronic Illness in High School

Back in high school, people often asked me why my vision was so bad, why I had frequent migraines, why I wore a leg brace several days a week, and how I simultaneously looked completely normal.  It wouldn’t be until after graduation that I could answer those questions, after nearly four years of asking the same questions myself.  Going through school with an undiagnosed chronic illness was a unique experience, and today I will be sharing answers to common questions and comments I received from fellow students as well as teachers.

Isn’t there medicine/glasses that can fix this?

WIth the medical model of disability, any type of imperfection is viewed as something that must immediately be cured, so that the person can be considered normal by society again.  Sometimes, there is no cure with today’s medical research, and people are left to try and manage their symptoms in the best way that they can with what they have.  I would have people without a medical background tell me that I should go on certain medications, and when I would respond that I have tried the medication and it was not helpful, people would dismiss me as not really having whatever symptom we were talking about.  Another factor is that it is fairly difficult to cure something when you don’t know exactly what it is.  Typically, the best answer to this question is that there is no treatment available yet, but who knows what can happen in the future.

You’re faking for attention

Ah yes, I must be faking my condition.  I love having lower grades because I had to miss class, and missing my band concert I looked forward to all year because someone chose to use flash photography when I was getting on stage.  I was beyond thrilled to get up in front of my entire freshman English class while spasming and slur my speech so that all of the boys in the class thought I was weird.  I adore having teachers refuse to assign me leadership positions because they’re worried I would be too sick.  And most of all, I love  not being able to do my classwork because I can’t see it, and having the teacher give me a zero!  All sarcasm here, but people say that a condition is fake when it is something they don’t understand.  What I don’t understand is why I would choose to have such poor health in what is supposedly the best years of my life.

I wish I had your condition, haha!

I wish I didn’t have this, but hey, things happen.  There is no reason for you to be jealous that I take naps during the day to get rid of migraines or that I get to sit in the hallway during a movie because of flashing lights.  Comments like this are always interesting to me because it seems like there is no stigma for chronic illness and that it is viewed as something normal.  I just laugh off the comment and drop the subject.

What do you even have?

If you can answer this question, then you would be a totally awesome person.  My condition baffled doctors for many years.  When I first started dealing with symptoms, my primary care doctor told my mom and I “don’t go looking for a zebra in a field of horses,” meaning to not go looking for uncommon or rare conditions.  About a year later, he looked at us and said “time to find that zebra!”  I’m sure towards the end of our search for a diagnosis it felt like we were looking for a unicorn.  Regardless, we always talked about my condition by mentioning the top symptoms, which is usually what I told people who asked me what I had.  Eventually, I would start telling people that my doctors suspected I had the condition I was later diagnosed with.  I felt comfortable doing this because we were running diagnostic testing at the time and I was also the textbook version of that particular condition.

If I were you, I would be in bed

Well, I would love to be, here I am at school regardless.  Since I deal with migraines and chronic pain every day, staying in bed all day isn’t an option, because I would never get anything done.  I have what my friends refer to as a superhuman pain tolerance because of my condition, since I can hold a conversation and participate in activities without collapsing, and I often don’t notice injuries unless they are pointed out to me.  While pain definitely is relative, I have learned to function through it and be able to continue living.

Why can’t you do this anymore?

As my vision has gotten worse, my need for accessible materials has grown exponentially.  I’ve also found it more difficult to participate in activities like dance.  It can be sad to remember the things I was able to do before I got sick, but it’s important to remember there is still so much that can be done.  I got more into writing and playing instruments after I got sick, and took up several other interests as well.  This may be said a lot, but it is true- don’t focus on what can’t be done, but focus on what can be done.

Have you tried essential oils?

I have had several people tell me that my symptoms can be cured by essential oils.  I do believe that they can help with certain symptoms, since I use peppermint for nausea and lavender for restlessness, as well as a few other oils, but none of them are able to completely cure my symptoms.  I tell people that while essential oils are wonderful, they are not a cure and should not be talked about as such.

Aren’t you a little young to be dealing with these medical issues?

Yes, yes I am.  Another favorite response to this question is “apparently not!”  Chronic illness can strike at any age, it does not discriminate.  While I have had low vision almost my entire life, I have only had my condition since I was around fourteen, and people are frequently surprised by that.  Someone once even asked me how I am supposed to be a teenager when I am so sick- since my condition did not stop my aging process, I still got to be a teenager, but not in the same way as a lot of my friends.

Why can’t you do this, but you can do that?

The environment I am in greatly influences whether I am able to perform a certain task or not.  If I am in a room with strobing or flashing lights, I will not be able to function as well as I do in a room without them.  Other factors include my use of assistive technology, my fatigue level, the time of day, the weather, and how much pain I am in.  Just because I can do something one day doesn’t mean I can repeat the same task the next day.

It would suck to be you

Actually, no.  Although my chronic illness has made me miss out on many experiences, I still have been able to do a lot of things and learn about topics that I wouldn’t have otherwise.  I’ve also developed a greater sense of empathy and kindness towards others, because I understand what it is like to be in large amounts of pain and feel like the entire world is spinning.  As I like to remind myself, I wouldn’t be studying assistive technology if I never had this condition.  It’s important to be grateful for the opportunities I have.  My illness will always be something I have, and never who I am.


 

How to Deal With Being Sick in College

I seem to get sick once a semester, and because of my existing chronic illness, I am more miserable than a majority of my friends, who just have whatever sickness is going around. One of the main reasons I am so miserable is because with Chiari Malformation, my head pain gets worse every time I sneeze or cough, and my vision also becomes extremely difficult to control. Thankfully I’ve already been sick once this semester, so I shouldn’t have to worry about getting sick again. Here are some of my tips for dealing with being sick in college.

Have a pre existing file with Student Health/Campus Clinic

My file contains information like my drug allergies/intolerances and a summary of my low vision and Chiari Malformation, as well as other chronic conditions. I also have a list of medication I am on and an abbreviated medical history. This helps the doctors because they don’t have to ask for a lot of information from me.

Skype into class

Since no one else wants to get sick either, ask to Skype or phone call into class for the day. If this is not an option, ask the professor for guidance on class attendance.

 

Have food delivered or ready to be picked up

 

The dining hall at my school has special prepackaged meals that can be picked up by a friend or RA for a student who is sick. If that isn’t possible, try to visit the dining hall during the off hours, and avoid touching things as much as possible.

 

Have over the counter medication delivered

 

I stocked up on over the counter meds when I got sick by ordering them using Amazon PrimeNow. At the time, everything was sold out on campus because so many students were sick, so this system worked. If you must travel somewhere off campus, try not to take the bus, and instead ask for a friend to drive you. Bonus points if this friend has already been sick and/or is the one that made you sick.

 

Spend time recovering

 

Don’t just mask the illness, make sure to treat it and spend time resting. The last time I was sick, I found myself sleeping for several hours, something that helped my migraines and eyesight tremendously. By spending time away from others, you will be able to relax and focus on getting better.

To anyone reading this out of necessity, I hope you feel better soon!

To The Parent Using Flash Photography in a Restaurant

Dear Parent,

I know you were very excited today to be attending the end-of-season party for your child’s sports team at a local restaurant today. The entire team was there, enjoying pizza and talking to each other, sometimes very loudly. There’s nothing wrong with enjoying the celebration, and this letter isn’t to complain about the noise (though my brother wasn’t happy about it being so loud). My problem is that to document this occasion, you decided to take several photos with the flash on. By doing this, you ruined my evening, and could have sent someone to the hospital.

You see, I have chronic migraines that are triggered by strobing or rapid flashing lights, such as those from a camera. When I see those lights, I get an intense migraine that knocks me out for a few hours. However, it’s not just me and fellow migraine sufferers who can have an adverse reaction to flashing lights. Photosensitive epilepsy is common in children, and those flashing lights could trigger a seizure. Seizures aren’t just limited to epilepsy, either- there are many other conditions that can have non-epileptic seizures caused by flashing lights. Some people have light sensitivity in general, and bright flashing lights can be an issue. Even people with anxiety disorders and PTSD can have flashing or strobing lights as a trigger. That’s a lot of people that could be affected by a rapid camera flash!

I understand wanting to photograph your child with their friends, but by using flash photography, you could be putting other people around you in danger. A better solution might be to take a big group photo at the beginning or end of the event, so that way you can see everyone. You can also just turn the flash off and continue taking pictures like you were, and simply retouch them for lighting later.

I’m pretty sure you ignored my mom when she told you that your camera could trigger a seizure, or a migraine like it had in me. My hope is that someday you will understand just how dangerous flashing lights can be for others, and you will think twice before using that camera flash in a crowded restaurant. For all you know, your child could develop a condition like this, and then you’ll be the one wishing all of the flashing lights would disappear.

Sincerely,

My head still hurts

 

Eye Surgery, Part 2

It’s now been three weeks since my eye surgery, and my eyes have completely cleared up and are looking normal again.  Simce I now have glasses with a prescription (read part 1 here), I can really see a huge difference in my vision from before the surgery. I don’t have prism in my glasses anymore, so they are much lighter in weight and I can pick out pretty frames. My (executive/lined) bifocal has a weaker prescription as well. With all of these changes, I received a new diagnosis for my eye condition.

Decompensated strabismus is a condition where a pre-existing strabismus is aggravated by strabismus from another condition. I have had accommodative esotropia, a common form of childhood strabismus, since I was three years old, and when I was fourteen, my vision went into a downward spiral. This has been attributed to the onset of Chiari Malformation (CM), a brain condition that causes chronic pain, migraines…and strabismus. With both my brain and eyes fighting for control of my eyes, my vision got worse than if I had just had one form of strabismus. Doctors had previously believed I had idiopathic vision loss or a condition other than CM that could be causing this, even though there is evidence of it on MRIs. However, the diagnosis of decompensated strabismus was confirmed by my neurologist and ophthalmologist following my surgery and led to further evidence that CM is a factor in my vision loss, though not necessarily the cause of it.

The surgery weakened one muscle in each eye and gave me the ability to see distance and eliminate my double vision, though I still see double when I am not wearing glasses or if I am tired. I can see about fifty feet directly in front of me clearly with glasses, and I can recognize faces and text from twenty feet away. The surgery did not correct my limited peripheral vision, lack of depth perception, or my print disability. I also still need a tint in my glasses to help with light sensitivity, though it is not as dark as before.

I am so glad that I had this surgery and that my ophthalmologist was able to improve my vision so much. When I went to get my glasses made, the employees at the store looked at my new prescription and my previous prescription, and joined in my excitement when I was able to see single images for the first time in six years when I put on my new glasses a few hours later.  It’s a whole new world.

Eye Surgery, Part 1

Exactly one week ago, I had eye surgery on both eyes for strabismus. My vision has been declining for a long time and I needed a prism of ten in each eye, plus a temporary prism of five, for a total of 25 prism. Since my eyes would just continue to need more and more prism, my ophthalmologist and I made the decision to have muscles strengthened or weakened in each of my eyes to prevent my eyes from getting worse.

This was not my first eye surgery. In 2008, when I was eleven years old, I had one muscle eye surgery in my left eye after I had relentless double and blurry vision following a volleyball to the eye a few months earlier (long story short, don’t encourage the person with no peripheral vision to join in for class field day). I woke up from the surgery not needing bifocals anymore and I rode a bike for the first time eight weeks later. It was amazing!

Fast forward eight years, and I’ve been in prisms for the last six years and am back in bifocals. Due to sensitivity to light, I’m wearing very dark glasses full time and also have to use a blindness cane because I can’t tell the difference between flat ground and a pothole. I walked in to see my ophthalmologist of six years right before school started, when the double vision was so intense and blurry that I couldn’t read anything more than three feet ahead of me.

“Well, young lady,” he told me, “you’re a mess.”

He wrote me a new prescription and we started discussing the possibility of surgery to help prevent from my eyesight from getting  worse. We made the final decision for surgery about three months later, after I finished my semester at college.

Fast forward to surgery day, and I was more than ready to get this over with. Because I wasn’t able to wear anything that went over my head after the surgery and I don’t like button down shirts, I was wearing one of these tank tops, which I could just step into or stretch the neckline to fit. For the surgery, I was allowed to wear yoga pants and fuzzy socks in addition to a hospital gown. I received pain medication and anti-nausea medication pretty much immediately after I was taken to the preparation room, and before I knew it, I was getting the anesthesia and loudly singing “Lucy in the Sky with Diamonds,” which probably embarrassed my mom to no end.

One hour after surgery, smiling with my sunglasses
One hour after surgery with my sunglasses

After the surgery was done, I woke up feeling no pain from my eyes. In my mind, I thought I had just woken up and, based on the size of the twin bed I was in, I must be in my dorm. I then asked myself why it felt like there was something in my arm, and then I realized I was in a hospital, and I’d just had my eye surgery. Apparently, I talked to the nurse for a few minutes afterwards about The Beatles and then asked where my mom was.

Instead of putting on prescription glasses, my eye doctor requested I wear reading glasses for two weeks following the surgery while my eye muscles relax and the swelling goes down. Because I am sensitive to light, I went looking for a pair that were tinted and that could be sent to my house reasonably fast. These glasses were everything I was looking for and more, and I have worn them very comfortably for the last week. They are $20 for one pair with Amazon Prime shipping. While wearing them, I can read large print and see things about eighteen inches in front of my face.  With these glasses, I could easily read screens of my devices without a problem, as these are more tinted glasses than actual sunglasses.

24 hours after my eye surgery.  My eyes are half red and still crossed.
24 hours after eye surgery

Following the surgery, I spent the rest of the day in bed and light hurt me a lot, but I was not in pain from the surgery. I was able to eat pancakes later that night at a restaurant with my mom and brother, but the lights over our table had to be turned off so I could concentrate on eating.

One week after eye surgery and six days after steroid drops.  My eyes are clearer
One week after eye surgery

Right now, I’m now on day 6 of steroid eye drops three times a day. They feel like acid being dropped into my eyes, but my eyes are starting to clear up more and look less gross. I have left the house maybe twice since I came home, and I went outside for five minutes and came inside feeling like my eyes were on fire because of the air. I get measured for real glasses next Wednesday, and we’ll assess how my vision is then.
Until then, I will continue to lay low and write more for my blog. I have so many great posts planned for 2017 and I’m planning many collaborations as well. To make sure you don’t miss a post, type in your email to get alerts when I add more content to the blog. You can find the widgets on the right side and the bottom of this page.
Here’s to 2017!