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Life with Chronic Migraines

Veroniiiica Lewis2 Comments


The year is 2011, but I’m in too much pain to remember that at the moment. I’ve forgotten a lot of things- my own name, the name of my cat, what town I lived in, and who the president is. All I can sense is levels of pain that I have never felt in my life before, and I wish they would stop. My parents thought I was having a stroke, the local hospital thought it was a drug overdose. It wouldn’t be until three days later at the children’s hospital that I would get pain relief and the diagnosis of chronic migraines, something no one else in my family had.

Chronic migraines are defined as “more than fifteen headache days per month over a three month period of which more than eight are migrainous, in the absence of medication over use (International Headache Society).” Migraines commonly run in families, and can coexist with other neurological conditions as well. Another name for chronic migraines can be chronic daily headache. Since 2011, I have had more than 15 headache days a month, sometimes reaching up to 30 headache days, where I have a debilitating migraine every day, a symptom connected to my diagnosis of Chiari Malformation.

For me, my migraines are drug resistant, though my neurologists over the years have had me try several different medications with awful side effects. Topamax made me never hungry, Verapamil made me dizzy, Amytryptiline and Imitrex gave me allergic reactions, and Neurotin gave me worse side effects than I ever could have imagined. I was missing school to go sit in the nurse’s office or missing band performances because the flash photography was similar in frequency to a strobe light, my biggest trigger. I had to navigate freshman year of high school while on large amounts of migraine drugs with weird side effects, yet still having chronic pain. I wish that experience on no one.

I started to manage my symptoms with massage therapy and acupuncture, and found that helped a lot with managing my migraines. It didn’t lessen their frequency, but because there was less pain in my neck and shoulders, the pain seemed more tolerable. I also start finding simple remedies that help me manage my symptoms, like peppermint essential oil to combat nausea or doing yoga to release muscle tension. Using alternative medicine has helped me a lot, though I understand that it isn’t meant to cure my migraines.

My senior year of high school, I was in almost all virtual classes for several reasons, one of which was my chronic migraines. I would sleep through my first period class, come to school for second and third period, and often leave during fourth period. Alternatively, I would stay through fourth period and then go home and crash in bed. Sleep was really the only way I could manage my migraines, which could be triggered by flashing lights, loud noises, the weather, or seemingly nothing at all. Food triggers were ruled out as the cause of my migraines, as well as vitamin deficiencies and similar conditions. My migraines were confirmed to be caused by Chiari Malformation in October 2015.

Fortunately, I have been able to attend college several hours from home and continue to manage my migraine condition. I have a private bedroom, meaning I do not have a roommate, but do have 1-3 suitemates who I share a bathroom and living area with. My disability housing accommodations state that I should have a lower-level private room with air conditioning, and the ability to make my room completely dark, as I am sensitive to light and sound when I have migraines. I also have a file with Office of Disability Services that says I have migraines. I schedule my college classes at times where I usually don’t get migraines and often come home from class and sleep (read more about my bed here). I have also gone to class with migraines before, as I know the migraine won’t improve whether I’m sitting in my room or sitting in the classroom.

Often times, people can’t believe that I am able to function through my migraines so well, and ask how I am able to live through this pain. The truth is, I have two options- let everything consume me and just sit in my room all day, or get used to the pain and live my life. While that first option may be beneficial for some people (and I understand pain is relative), I have chosen the second option of developing a superhuman pain tolerance and just living life. I do not like talking much about my condition in real life, because I do not want sympathy or attention from others, especially people I barely know, as I can manage my pain just fine. My close friends and family know the depth of my condition, and that’s more than enough.

I can’t say that life with chronic migraines is the best thing ever, but I can say it has made me a more understanding person. Whenever someone around me experiences migraines, I can relate on a deep level to the pain, sensitivity to the world, and feeling like hair weighs 100 pounds. I understand there are people who have it worse than me, but my hope is that my experiences with chronic migraines can help someone else understand their condition more.

Too High-Functioning

Veroniiiica Lewis1 Comment


The teacher is passing out the classwork for the day, and there is a noticeable lack of large print or colored paper at the bottom of the pile. As it comes time to give classwork to my section, the teacher looks at me and goes “Oh shoot, I forgot you needed large print. Figure something out.” My best friend next to marks another tally on a list we call “times Veronica didn’t get her work”- in one class, we have over two dozen tallies.  I often leave the classroom to go enlarge my assignment, since I know that if I don’t, the teacher will give me a zero and remind me of how they wished I wasn’t in their class. Even though I have an IEP, and have had one since kindergarden for my low vision, that doesn’t seem to stop teachers from continuing to discriminate against me. I report this to my case manager or other staff member in the special education department, and they pretty much say the same thing each time:

“You’re so high functioning, it’s easy to forget about you!”

My parents and I are in an IEP meeting because I currently have a C, or a D, or a F in one of my classes. The teacher has repeatedly forgotten or refused to enlarge my work, saying it is a waste of resources. I have As in almost all of my other classes, Bs in a few of them. My parents are trying to figure out how an A student is getting such low grades, and why nothing is being done about it. But, by technicality, Cs and Ds are passing, and the special education department says that everything is fine, after all:

“You’re so high functioning, we have other students to take care of!”

I need some additional resources in the classroom. I try to bring this up with special education staff both at my school and at the district level. Most of my requests are ignored, because I shouldn’t need the help. When people do appear from the district level, they are asking me questions about other students, or strictly talking about other students, saying that I am an easy case, they don’t have to worry about me, there are worse-off kids that deserve their time, and I am wasting their time. I realize that the only way I will succeed is if I figure it out myself, since they always tell me:

“You’re so high functioning, you don’t need our help!”

I’m a college student who is studying assistive technology and am waiting for a friend after a band performance. I’m holding my instrument, wearing sunglasses that block out the glare of the lights, and balancing my blindness cane in the other hand. While I’m waiting, a person I have never met walks up to me and starts asking a series of rude questions about my vision and how they had never met someone like me before. They do not stop talking to me, and get frustrated with me that I don’t respond. Later on, I am told to apologize and answer their questions, and their response is almost exactly what I expected:

“You’re so high functioning, that’s inspirational!”

My typical response to people calling me high functioning used to be saying “thank you, and so are you.” However, recently my attitude changed about this, and I realized that I could replace the negative phrase with a more positive one. Despite the best efforts of school personnel, I have been able to see past the negative circumstances given to me and still succeed in school. I have discovered my passion for assistive technology and helping others to succeed. My condition is a major factor in my life, yes, but it isn’t the only thing in my life. I am not just high functioning:

“I am high achieving.”


How Do People With Low Vision…Go To Prom?

Veroniiiica LewisLeave a comment

It seems like every year, a news story circulates about how a student with a disability and a student without a disability go to prom together.  It’s usually touted as something inspirational and kind, since the students with disabilities are perceived as not having many friends or being the outcasts of the school, and the student without a disability is considered a completely awesome person just because they are spending time with the other student.  I was talking about this phenomenon with a friend who jokingly asked if my prom date made the news for going to prom with the only girl with low vision in our school.  Thankfully, we were just treated like every other couple at prom, and had a blast.  Here are some tips that can help ensure everyone has a good time, without winding up as the center of attention for having a disability.

Make sure you can easily move around in your clothing choice

This applies more for the ladies, but make sure that it is easy to move around and walk without falling in whatever clothes that you pick.  At the two dances I attended in high school, many of the girls would take off their shoes the moment they got to the dance floor, but would often trip over their long dresses.  I chose to wear flats the entire evening so I had traction and reduced my risk of falling- as my date put it, I trip over enough flat surfaces as it is, so there is no need to put me in high heels.  If you use a blindness cane, make sure it can’t be caught in your dress or shoes either.

Taking pictures before the dance

Before the dance, the parents in our group took photos of all of us.  If it is an issue, make sure to notify them that you are sensitive to flashing lights so that they know to turn the flash off.  Also make sure that there are no obstacles in the picture that could pose an issue- for example, falling down a flight of stairs or into an open body of water.  Also, make sure the photographer tells you where the camera is located so you aren’t staring into space.

Have your date familiarize themselves with being a human guide

While I didn’t use a blindness cane in high school, I had a habit of frequently running into walls, people, objects, and generally missing visual cues.  Luckily, my prom date was my best friend who had gotten used to guiding me to all of my classes and alerting me to obstacles.  It never hurts to remind your date that you have trouble seeing and may need additional help navigating at prom.  Check out my post on how to be a human guide here.

Figure out the layout of the dance floor

At the beginning of the dance, my date described to me the location of the stairs leading to the dance floor, where we were sitting, the entrance/exit, and where poles were located.  While I never was further away than arm’s reach from them, this was still very helpful information to remember in the event we got separated.

Request that photographer avoid your area

If bright, flashing lights in your face are a concern, talk to school administration and the photographer prior to the dance, and remind them again at the dance, to avoid taking photos of you or pointing the camera directly in your face.  With the way that the dance floor was laid out, it was easy to avoid the flashing lights that were used, and the photographer was more than happy to accommodate our request.

If possible, ask for the event to not use blue and red flashing lights

This wasn’t a problem at my school, but a prom that another friend attended had pulsing red and blue lights that they described as seizure inducing- they had to sit out for a few minutes because of the lights, and they’re not even migraine or seizure prone.  This is another good thing to talk about with school administration, as many students can get migraines or seizures triggered by these lights.

Have a place to hide out

There was a period of time at prom where a lot of unfamiliar, loud music and dancing was taking place, and my prom group and I decided to go hide out in the lobby of the hotel we were at.  This helped prevent sensory overload and also gave us a break from dancing- since I couldn’t navigate to the tables near the dance floor easily, it was much easier for everyone to meet in the lobby.

Handling rude comments

I had a few people crack jokes about my date going to prom with someone who was visually impaired, and a few others asking me if I could even see what was going on.  My best advice for this is to ignore the weird comments, or just laugh them off.  It is not worth getting into an argument over.

Don’t be afraid to have fun!

Before the dance, I was very nervous about what to expect and was worried that something would go wrong.  Luckily, my date was a totally awesome person, and my prom group was filled with awesome people as well.  Prom is about spending time with your high school friends before you all graduate, and it’s a wonderful way to make memories.

I hope your prom is lots of fun!

 

Answering Stranger’s Questions- College Edition

Veroniiiica Lewis2 Comments

As college decision day approaches, prospective students and their families have been touring my college, trying to decide what school will be the best fit for them. Often times, college is the first time people are exposed to a large, diverse population, and it can seem overwhelming. Naturally, people are inquisitive and like to ask questions, sometimes not thinking about how to phrase them.

Because of all of the visitors on campus, I have been using my blindness cane more often for identification purposes, so I am less likely to be hit by a car. With low vision, it can be difficult to navigate campus when there are so many visitors driving around. As I have been walking on campus, I have had many families approach me or loudly talk about me using a blindness cane, sometimes in a very rude way. It can be difficult to answer these questions, especially when they have negative or offensive tones, but education is one of the best ways to combat ignorance. Here are some of the questions I have been asked over the last two weeks by visitors, and how I answered them. I have been requested to add a trigger warning for what may be considered ableist slurs/language and offensive terms.

Whoah! Are you totally blind?

No, I have low vision and poor peripheral vision, meaning I have trouble seeing what’s around me. I use my blindness cane to help me analyze my environment and as a cue to other people that I can’t see very well.

Can you see me?

For some reason, I often hear this when people are standing right in front of me.  I usually respond with “sort of” or “yes.”  If it is someone who is convinced I can’t see anything, I usually find some feature that I can mention to them, for example a blue shirt or green backpack.

Look kids, a blind girl!

I was walking with a friend when someone yelled that in our direction. We didn’t want to yell back that I had some vision, because that would waste time. Instead, my friend yelled back”check it out, a sighted person!”

What’s with the sunglasses inside?

I wear tinted glasses to help with light sensitivity and glare. No, they aren’t transition lenses, they always are this color. And yes, I guess I do wear sunglasses at night, like the song.

What’s your major?  Oh, that’s not a real major

I’m studying assistive technology and software engineering, which is a fairly uncommon major but there are many different careers available, so I will not have an issue finding a job after graduation.  I have learned to give an example of what I will do after college, so when I say my major, I add that I am “studying to create tools for people with disabilities.”  Often times, people then think my major is really cool!

How come she can see but uses a cane?

Another friend was asked this by an employee while we were at a restaurant. My friend explained I have some sight, but still rely on the cane frequently. A different friend responded by saying “she runs into less walls this way” or “it’s easier to figure out where she is based on the taps of the cane.”

You’re too pretty to be blind!

While I’m not blind, I have low vision, my favorite response to this statement is “apparently not!”

You’re too young to not be able to see!

See above- apparently not!

Why do you disableds think you can just parade around campus?

This was said to me earlier this afternoon, and I just wanted to shove my post “You Belong” in their face. People with disabilities fought very hard to be able to attend college, and we deserve to be here, just like everyone else.

I didn’t know blind people could go to college!

I’ve answered this a couple of ways. For people that seem pleasantly surprised, I say that there are laws that make this possible, and I am grateful for the opportunity. When someone seems surprised in general, I just say “here I am!” And when someone seems greatly upset that someone with low vision can attend college, I just smile and move as quickly as I can from the situation.

You’re taking education away from someone who can see!

I got into this college not because of what I have, but who I am as a student. It had nothing to do with my low vision- my essay to admissions wasn’t even about my eyesight, it was about volunteer work. I’m not here because I can’t see.

Hey, can you give us directions to…oh nevermind

I’ve had several people approach me for directions, look at the cane, and quickly try to move away. I actually know this campus extremely well, and would be happy to help you find your way to wherever you need to go!

How bad is your eyesight?

I used to explain a lot more, but now I just say “it could be worse, but it’s still not great.” This question doesn’t really bother me, as often it is how people start conversation when they first meet someone with low vision, but it still can be an interesting question to answer.

I hope these answers help you when dealing with questions of strangers. Feel free to add more questions/answers in the comments below!

How To Approach Someone with Low Vision

Veroniiiica LewisLeave a comment

While walking back from class one foggy night, someone recognized me and wanted to get my attention. In order to do this, they put their hand on my shoulder while standing behind me and started mumbling. Naturally, I screamed in their face and hit them, because I had no idea who they were, something they later got very offended over because they insisted I should have been able to see them. Following that experience, I have developed this guide on how to approach someone with low vision or blindness without terrifying them. I’ve written this post for people who may have a new friend with low vision or are not familiar with low vision in general.

State your name and where you are

When people approach me, they often say “hi Veronica, this is insert name here, I’m on your left.” That way, I know who it is and to turn and face them. For close friends or people who I am walking out to meet, they often just say what direction they are in and how far away they are- for example, when walking out to meet my friend who is right outside my door, she would say “three feet to the left!”

Use verbal cues

Many new friends have been upset that I didn’t notice them waving to me when I walked by. It shouldn’t be much of a surprise, but I couldn’t see them. Verbal cues are much more effective, as it lets someone know to look for you. Never use flashing lights to alert the person to your presence, as sensitivity to flashing lights is very common for people with low vision.

Do not touch

Especially if they are a new friend, do not touch or attempt to interfere with a person’s movement or blindness cane. Grabbing them from behind is another bad idea, as they barely have eyes on the front of their head, let alone eyes on the back of their head. Try to keep yourself in their line of sight.

When delivering something

If you have to deliver an item to a person with low vision, have them meet you at a predetermined area- I usually meet them at the Starbucks which is in close proximity to my apartment. Don’t have them approach a car, as they may fear getting hit or have difficulty navigating a parking lot or busy street. Clearly identify your name and your affiliation, and say their name as well so that they know you are talking to them. Walk over to them as opposed to having them walk over to you. Also, alert them when you are handing them something, because otherwise the item might fall on the ground.

If they are using a guide

Talk to the person with low vision, not their guide, and make eye contact. The guide may describe you to the person with low vision, or act defensive if they do not recognize you. Again, identifying yourself is key. If their guide is not human (for example, a guide dog), do not attempt to distract the guide dog or ask to pet it. To learn more about how to be a human guide, click here.

All of this information may seem overwhelming at first, but it can be summarized with this sentence- no one likes a sneak attack. Also, once you have the person’s attention, there is no need to continue talking loudly, as they can probably hear you just fine.

How Do People With Low Vision…Go to the Movies?

Veroniiiica LewisLeave a comment

Back in tenth grade, my favorite way to spend time with my friends was to go to the movie theater at the local mall.  Even though I had a sensitivity to flashing lights, quick camera movement, and couldn’t always see the screen very clearly, I never really missed out on anything that was going on in the film.  Here are some tools and tips I have for watching movies in theaters.

Descriptive audio devices

Free of charge to use, the descriptive audio devices are loaded with a description of what is going on in a scene and also warns viewers of flashing light sequences or fast movement about five seconds before it occurs on screen, and also announces when the sequence ends.  With this device, I was able to watch Captain America: Civil War the night it premiered.  At most movie theaters, the device can be requested at the ticket purchase window.  One important thing to note is that some movie theaters require you sign your name and give your address when you borrow one of these devices, and the form to sign it out often isn’t in large print.  This information is just to make sure you don’t walk off with the device.

Also, anyone who charges for the use of these devices, or refuses to provide them, is breaking the law, specifically the Americans with Disabilities Act, Title III, Section VI.

Online flashing lights guides

I have had great luck finding out if a movie has lots of flashing lights in it simply by googling the name of the movie along with any of these phrases:

  • flashing lights
  • epilepsy
  • strobe lights
  • migraine triggers
  • trigger warning

I don’t use any specific website for this, rather just rely on whatever comes up in Google.  Often times, these guides will have scene markers and specific lines of dialogue to let the viewer know when the lights start.

Where to sit?

No need to sit in the very first row of the theater.  I found that sitting towards the middle or back in the center is best.  Because the stairs can be very awkward, I have a friend act as a human guide walking slightly in front of me while holding my hand, and I use my cane as well.

Asking questions

Yes, I am one of those people who asks a lot of questions during a movie, even when using descriptive audio.  Having a human guide is extremely helpful because they are able to tell me who is on the screen or what just happened in a movie if I ask.  When I saw the movie Birdman with my brother, I found that the descriptive audio was still very confusing, so having someone there to answer my questions was extremely helpful.

Sound sensitivity

I have a friend who is very sensitive to loud noises, especially low pitched ones.  In order to help with this, they wear ear plugs or earphones that are unplugged during the film to help cancel out some of the noise.  If using a descriptive audio device, moving the headphones slightly out of the headphone jack will create white noise in the form of static that may drown out more intense noises like explosions or loud music.

Dealing with strangers

There will always be strangers who are curious as to how or why someone with low vision goes to a movie theater.  Remember that you have the right not to answer their questions, and can simply ignore them.  If you choose to answer some of these common questions, I have written my typical responses below.

Are you totally blind?  Nope, I have low vision.

Are you able to see the screen?  Mostly, that’s why I use descriptive audio.

What’s descriptive audio?  It describes what is on the screen for me, like who is moving around, what is going on in the background, and who is talking.

Did you get a discount?  Nope, I paid the same price you did.

What’s the point of watching a movie if you can’t see it?  I can listen to it and I don’t feel like I’m missing out on anything.

Look at that blind girl!  Usually a comment from well-meaning parents of little kids, I usually just ignore it.

Do you have (insert disease here)?  Unless they guess what conditions I have correctly, which someone is yet to do, I just answer no and move away as quickly as possible.

 

Hopefully with these tips, your next movie outing will go smoothly and you’ll be able to enjoy the film!

How Do People With Low Vision…Use Human Guides?

Veroniiiica Lewis2 Comments

One time, on a day trip with a couple that I am good friends with, I kept running into stuff constantly, even with my blindness cane to help me. There were so many obstacles on either side of me that it was hard for me to process it all. To help me figure out what was around me, I grabbed my friend’s hand, and she continued to hold on to her fiancee’s hand. As a result, we were walking down the street, all three of us holding hands. While going down stairs and walking into rooms was slightly challenging, and I’m sure we got lots of stares from onlookers, I started running into things less and was able to understand what was around me.
Human guides, or as I affectionately call them, my eyes, are extremely important when it comes to living with low vision. Even though my cane can give me a lot of feedback, sometimes it doesn’t alert me to things until it’s too late. My friends are trained to help alert me to my surroundings and what’s in front of me, and while nobody is perfect, I like to think my friends are pretty darn close. Here are some tips on being a helpful human guide for someone who has low vision.
1. Don’t say things like here, this way, right there, etc. I like to compare it to someone asking where I am and me saying I’m in Virginia. That could mean anything, as it’s a very large area. Likewise, when you tell someone who can’t see that something is “over there,” it’s not very helpful when you can’t see where “there” is.

2. Don’t say “follow the sound of my voice!” I am not a bat, I do not have echolocation, and when someone says that in a crowded room, it’s hard to figure out where they are going.

3. Do allow them to grab onto your hand or arm if needed. I hold hands with my friends all the time. On a trip to the Smithsonian and Madame Tussaud’s, I held hands with one of my best friends practically the whole time as she helped guide me around and describe to me not only the hazards around me, but the cool things as well.

4. Remember the five most important obstacles. These are walls, curbs, potholes, doors, and stairs. Alert someone to these as you approach them, and when possible, move away from them.

5. Remember how important you are. You are acting as another person’s eyes, so make sure not to hurt them or take advantage of this. Remember how much they trust you in order to let them guide you. Having a seeing-eye friend is one of the best types of friends to have when living with low vision, and I am always grateful that I have my own.

 

How do people with low vision,..