Life with Chronic Migraines


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


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.”


You Belong

Last year, I found myself having a conversation with someone who was not knowledgeable about people with disabilities. They were shocked that I was in college, because I have low vision, and kept asking me why I “took the opportunity away from a sighted person to attend this college.” I was in a bit of shock, and explained that I had attended public school just like them, I took classes in the general education system, and applied to college just like the rest of my friends. I even pointed out that I was in the engineering department at my college, something that I don’t often mention to people I have just met. They didn’t seem to care and kept insisting I was robbing others of educational opportunities. I dropped the topic and walked away.

Earlier today, my friend had a near identical conversation with someone who claimed that students with disabilities shouldn’t even go to public school, let alone go to college, because it would be impossible for them to accomplish anything. My friend came to me depressed, as they had taken the words of a complete stranger to heart. I don’t know the exact circumstances leading up to this conversation, but I want to remind anyone who has ever felt discouraged after these types of conversations of these two words:

You belong

You are a person with a disability, not a disabled person. After all, you are human, and the disability is something you have, not who you are. It is not a good thing or a bad thing, rather just a component of the person you are.

You can attend public school and receive accommodations thanks to the Individuals with Disabilities Education Act (IDEA), something that has been around for over forty years. It lets you be in the least restrictive environment for your learning, meaning that you have the right to be in the classroom if that’s where you function best. And you also have the right to receive services that help you learn, such as large print, Braille, extra time on tests, and so much more.

You can go to college thanks to the Rehabilitation Act of 1973, Section 504, which prevents discrimination based on disability. Your college helps you succeed by giving you a disability services file, and you are held to the same standards as other students. You are not stealing opportunities from other students because you have a disability, because chances are, your disability was not something you listed in your college application, so it wasn’t something you were judged on.

You can go anywhere. The Americans with Disabilities Act of 1990 grants accessible transportation and buildings, as well as many other things. Title II also grants workplace and postsecondary disability accommodations. I joke that the only jobs I can’t hold are taxi driver and brain surgeon, but thanks to this law, I can be a software engineer or work in an assistive technology lab, or whatever else I want.

Things may seem a bit scary right now, and it’s okay to admit that. But don’t think for a moment that people with disabilities don’t belong in the world we live in. Albert Einstein had dyslexia and became one of the most brilliant minds of our generation. Stephen Hawking uses a communication device to deliver mindblowing theories about the world around us. Stevie Wonder and Ray Charles didn’t let blindness stop them from creating music. And of course, there are people like Helen Keller, Christopher Reeve, Edward Roberts, and so many more that helped to advocate for people like them who lived with disabilities. Without these people, our world wouldn’t be the same.

So remember this when someone tells you that people with disabilities should be anywhere but where you are right now:

You belong.

Don’t Call Me Vision Empowered

I have low vision. I’m not afraid to say it, because I do not know what life is like being able to see like so many others do, and I have to remind others of that. I am extremely open about my vision loss, and never get offended if a young child on the metro, a new friend on campus, or even a total stranger on the street wants to know how I use my blindness cane or my different assistive technologies- in fact, I explain to them how I do to the best of my ability. I refer to myself as being visually impaired, having low vision, or having vision not corrected by glasses. Never will you hear me refer to myself as being “Vision Empowered.”

I first heard that term use to describe someone while I was talking with someone in Washington, DC one day. I thought it was one of the craziest things I’d ever heard, as it discounted the fact I can’t see well. At first, I thought that this was a random person who made up a term, but I heard it mentioned in many conversations I had with people in the following weeks. It sounded like people were trying to deny my disability or modifying words to avoid hurting feelings.

I have a theory that this phrase was coined by parents that were upset their child couldn’t see and wanted to make them sound like they were better than other kids. It’s the same parents who dress their kids in shirts that say “I have insert disability here, what’s your superpower?” The ones who try to deny problems are as bad as they are. The ones who want the world to accommodate their child, and don’t tell the child what to do when the world isn’t the way they need it.
I could hear my mom roll her eyes over the phone when I told her about being referred to as vision empowered. She has never been one to tell me the world is an accommodating place, one where everything is large print and with light filters. Instead, she taught me how to make the world accessible for myself and to be a fierce advocate for myself and others. One thing I really appreciated is that she never told me I couldn’t do anything because I had low vision and let me do whatever my sighted brother and sighted friends were doing…with the exception of driving. She told me “I could see someone describing you as empowered, but not vision empowered. That just makes you sound stupid.”

I told a group of close friends who are sighted about the term as well, and they all couldn’t believe that the term existed. One friend told me it made me sound like I’m the type of person who demanded that there be Braille on a drive up ATM. If someone introduced themselves or if someone was introduced as being vision empowered, they told me that they would wonder what that meant and it would create more questions about what the person’s level of vision was than it would create answers, while terms like blind, visually impaired, or low vision are self explanatory.

To say I am vision empowered is to talk down to me and say my accomplishments only happened because I have a disability. It is to discount my low vision and say that it’s not as bad as it actually is, or that life will always be easy. Even worse, it is to see me as my disability and permanently associate everything I do with how I see.  I am okay with the terms low vision, visually impaired, vision loss, and many others, but not being told my vision loss makes me a more empowered or special person.

The only time I want to hear the words vision and empowered together in a sentence is if someone says “The inspirational life you live with low vision empowered others to follow in your footsteps and succeed as well.”

www.veroniiiica.com