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.

My College Bed

My College Bed

When I was shopping in preparation for freshman move-in, one of the main things I focused on was my bed.  I have Chiari Malformation, which causes severe back and neck pain, as well as chronic migraines that can only be treated with sleep, so I spend more time resting in bed than the average college student.  Because of this, it was extremely important that my bed be as comfortable as possible, and be a place where I could easily recharge, as well as manage my pain.  Here is everything I have for my bed, starting from the foundation.  I live in a single room, meaning I am the only one in my bedroom.

Mattress

While I didn’t have to buy this, I thought it might be helpful to show off my mattress with nothing on it.  While it is possible to request a full size mattress through disability housing, I have the standard college sized mattress, which is a Twin XL.  After sleeping on it at college orientation with nothing (and lots of back spasms), I got an idea of what I would want to look for in padding.

Wamsutta Cool and Fresh Fiberbed

The Wamsutta Cool and Fresh Fiberbed is the only mattress topper I have ever needed for my dorm bed.  It is very soft, but still provides fantastic support.  It also fits nicely in the college washing machines.  I never had to add any other mattress supports, as this provides everything I needed.  It is a soft pillow top cover that fits my mattress exactly.  It can be found at Bed, Bath and Beyond and Amazon.

Room Essentials Pocket Sheets

I bought a fitted sheet for my bed as well as several different pillowcases from the Room Essentials brand at Target.  They are easy to care for and remind me of t-shirt material.  One of my favorite features is that the fitted sheet contains side pockets, which work as a great holding place for my glasses at night.  I bought two fitted sheets and seven pillowcases (more on why I bought so many later in the post).  Sheets can be purchased here, and pillowcases can be purchased here, but are only available in-store in some regions.

Life Comfort Blanket

I bought this blanket from Costco about two years ago and loved how soft it was- in fact, I fell asleep during move-in while using it.  One downside though was that it MUST be washed before first use, or else it sheds everywhere!  I was covered in gray fuzzballs, but the problem went away right after I washed the blanket.  It can be found on Amazon here.

Twin XL Heated blanket

My college allows students to have heated blankets, but not heated mattress pads.  I received a heated blanket as a Christmas present in high school, and it has been one of my favorite gifts ever.  I got a Twin XL sized blanket for college, and I use it often- I like to turn it on a few minutes before I go to bed so that my bed warms up.  I cannot find a link for the one I have, but it was purchased for less than $50 at Bed, Bath, and Beyond.

Room Essentials Microplush Blanket

This blanket is great for layering with other blankets, or simply on its own.  I have a very similar blanket on bed at home, so I knew I would want one in college as well.  It hangs off my bed a bit, but I think that is because of how my bed is pushed against the wall.  Get it at Target. 

Room Essentials or Xhilaration Comforter

I have both Room Essentials and Xhilaration comforters layered on my bed.  They are fairly lightweight, and I can also rearrange my blankets so that I am sleeping on top of one (the comforter pictured is from Xhilaration).  I found very little difference between the Twin and Twin XL sizes between these brands, as the comforter on top was labeled a Twin size and it generously covers my bed.  They come in a variety of designs- here is my Room Essentials comforter, and here is my exact Xhilaration comforter.

Yogibo Caterpillar Roll

This pillow is what keeps me from rolling face first into the wall every morning, a problem that I often faced when I lived in a dorm with concrete walls.  It also provides great support for my back when I sleep on my side.  Get it from the Yogibo website or on Amazon, with Prime shipping.

Room Essentials Extra-Firm Pillow

I needed a pillow that was cheap in comparison to my other pillows that I could use for layering, so picked up one of these at Target.  I don’t use this as my main pillow, so it didn’t really matter how much support it had.  Get it at Target here.

Beauty Rest Extra Firm Pillows

Why do I have five of these pillows?  Well, with all of my different spasms, I have found that these pillows, in combination with firmer ones, provide optimal support and help me rest when I have terrible pain.  They do not put additional strain on my neck, and I can sleep in any position that I want.  Why do I have an odd number of these pillows when they come in packages of two?  I don’t know.  I originally purchased these from Costco, but they appear to no longer be available.  Get them from Amazon with Prime shipping here.

Yogibo Sleepybo

I talk about Yogibo products more here, but this Sleepybo is a very firm pillow that reminds me of my beloved Yogibo at home.  This pillow works amazing when I have pain behind my eyes or for elevating my legs.  It is also one of the main pillows I use at night.  It is currently out of stock on the Yogibo website, but can be found here.

Purelux comfort cool pillow

Another great Costco purchase, this is the firmest pillow I have, and the cooling sensation is absolutely amazing when my migraines make it feel like my hair weighs a hundred pounds.  It also has a curved end, so I can insert in a neck pillow if I need one, which works awesome for when I have neck spasms.  I found it on Amazon here.

Cozybo

Since I use so many blankets,  I like to keep a lightweight one at the top for when I am sensitive to temperature, or suddenly develop a migraine and find that it’s too much energy to be underneath the covers.  As mentioned in my Yogibo review, this is my brother’s favorite blanket and Yogibo product, because it is both warm and lightweight, and the material is very smooth.  Get it on the Yogibo website here.

How I stack pillows

When I stack my pillows to go to sleep, I usually do it in this order:

  • Cooling pillow on the bottom
  • Beautyrest pillow
  • Sleepybo
  • Beautyrest pillow
  • Beautyrest pillow between pillow stack and wall
  • Extra firm pillow on side facing wall
  • Beautyrest pillow on side facing wall
  • Extra Beautyrest pillow for rearranging or against the wall

Toddler Safety Bedrail

So, my first morning in my dorm room, I rolled out of bed…and then fell three feet to the floor because I forgot how high the bed was.  My parents bought me one of these toddler safety bedrails from Wal-Mart and set it up for me, so I wouldn’t do something like that again.  Weirdly enough, I’ve gotten lots of compliments from friends who would visit my apartment and talk about how they were constantly falling out of bed.  It also helps to reinforce my stack of pillows. Get it from Walmart here.

I am lucky to be able to sleep for hours at a time, and have so many things to help me sleep as well.  A lot of these items will be on sale in the coming weeks for back-to-school, so keep an eye out and set price drop alerts!

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10 Staff Members To Meet in College


Before I even started at my university, I had already talked to almost three dozen faculty and staff members on the phone and in person to ensure that I would not have any disruptions in receiving my approved classroom and housing accommodations.  Because of this, I was able to learn what staff members would best help me advocate for myself and that would help me while I was in the classroom or in my dorm.  Here are ten staff members that I highly recommend talking to before move-in or the first day of classes.  Please note that some colleges might have more than one person in these positions.

Disability Services Coordinator

Before I even applied to my university, I interviewed the Disability Services office multiple times about how they handled students with low vision (read more about my questions here).  Luckily, the department is very proactive, allowing students to set up accommodations before any problems sink in, and I was assigned a coordinator that specifically worked with students who were blind or had low vision.  The first staff member I worked with was a wonderful resource and helped me write out an accommodation plan that ensured I would receive all of my services  I can’t say enough nice things about them.  Read more about my experiences setting up a file here.

Assistive Technology Specialist

Assistive technology will be your best friend in college, and it always alarms me when students don’t embrace it.  I was an unique case when I arrived at my university- as one of my colleagues puts it, “most college students don’t come in knowing what assistive technology is, let alone wanting to study it.”  The assistive technology department can help with assessments, scanning in textbooks, and providing access to labs.  Some assistive technology departments also organize testing centers for students with disabilities.

Testing Coordinator

The testing coordinator helps make sure that students are able to take tests, quizzes, exams, and more in an environment where they can receive their accommodations.  Students can be referred to this department either by the assistive technology specialist or through Disability Services.  Testing accommodations are typically written in to the Disability Services file, but some testing centers develop their own student files.  It helps to talk to this person before the first day of classes because some majors may require a placement test for math, foreign language, or English classes.  Read more about my experiences with the testing center here.

Special Populations Housing Coordinator

This person is likely part of the committee that handles the special housing requests, and ultimately assigns students with special housing needs to their spaces.  When I had issues with not being approved for special housing as well as my first housing assignment, this person helped ensure that I received the accommodations I requested, and assisted me in finding an accessible room.  This was incredibly helpful with my housing this year, as I am able to stay in the same dorm room that I did last year.  Read more about my housing accommodations here.

Resident Director

This is the staff member that oversees the dorm building and actually lives there as well.  My resident director has been awesome about relaying important information and is a great person to talk to if there is a problem.  They also have helped me with navigating outside and preparing for inclement weather.

Academic Advisor

Each major has an advisor that assists students with picking out class schedules, and can also assist if there is an issue with the professor.  They also tend to be very honest about which professors embrace having students with disabilities in the classroom, and which professors are more hesitant.  Some departments may have advisors also be professors, while others have one or two people that are full-time advisors.

Student Support Specialist

For students who are apprehensive about a situation or potential situation, talking to a member of the Student Support staff can be a great help.  When I was worried about a situation with another student, the staff listened to all of my concerns and helped me develop a plan to ensure that I wouldn’t have to worry about the situation anymore.  This department usually has a confidentiality agreement in place, meaning that they do not have to report what is said in the meetings unless the student requests that they do so.

Security/Police

I made a note with university police that I use a blindness cane and have low vision, so that they would be able to assist me easier if I called.  I also made a note of what room I lived in on campus so if there was a fire alarm and I couldn’t escape, they would know where to find me.  One of my friends who has a severe medical condition gave police an abbreviated medical history, so they could assist emergency medical staff in administering care.

Student Health

While I didn’t work with them until I had my first visit, having a copy of your medical history and health insurance with the Student Health office can be invaluable, especially if you have a chronic illness.  I have a note in my file that I have Chiari Malformation, chronic pain, chronic migraines, and low vision.  Read more about my experiences with Student Health here.

Mail Services Coordinator

This may seem random, but talking to the Mail Services coordinator is very important.  With my low vision, I cannot use combination locks, so I contacted this person to ensure that the mailbox assigned to me would be one that uses a key.  Another one of my friends contacted them to ensure their mailbox would be accessible to someone using mobility aids that couldn’t bend over.  In the event that it’s impossible to go get mail, you can contact the coordinator to authorize someone else to pick up mail as well- I authorized my resident advisor to get my mail after I was in a car accident, and other friends have authorized me to pick up their mail while they were in the hospital.

While not everyone may need to talk to each type of person on the list, I have been grateful for the resources that each of these people have provided me with.  They all have helped, in one way or another, to ensure that I am thriving in the college environment.

How To Prepare for Extreme Weather on Campus

On President’s Day weekend in 2016, a large amount of snow came to visit my college campus right outside of Washington, DC. I wasn’t prepared in the slightest for the incoming snow- sure, I had a small amount of food in my dorm room, but since I ate at the dining hall all the time, it was mostly snack foods. I wound up trapped inside of my dorm room for two days, eating peanut butter and jelly crackers and daydreaming about what I could be eating, if only I could walk out of my dorm building. Believe me, once the snow melted, I was beyond thrilled to be eating normal food again. Here are some other tips I’ve learned to help students who are on campus during extreme weather.

Get food in advance

Now that I use Amazon Fresh, I have a small stockpile of frozen dinners and other healthy foods in my fridge at all times, in addition to non perishable foods I can have in case the power goes out. However, I still enjoy utilizing my meal plan to stock up on food prior to a weather event. I bring containers in my backpack to the dining hall and fill them with things such as salads (dressing in a separate container), wraps, peanut butter and jelly, grain salads, soups, pasta (sauce in separate container), fruit, pizza, and whatever else I can. I just put everything in my fridge when I get back to my room and reheat it as needed. My school does have a rule against taking food outside of the dining hall, but they tend to be more relaxed about this rule before and during extreme weather.

Call your professors before leaving for class

During Superstorm Jonas last year, I attempted to walk to my class halfway across campus. I wound up making it about halfway before falling down on the ice and having to call a police escort to take me back to my dorm. My professor later asked me why I attempted to walk to class, and said I could have just called him and said I couldn’t make it, and I would have been exempt. So, before leaving for class in extreme weather, call your professors and see if conditions are stable enough to walk to class. Another benefit is that the call can serve as a timer to see how long it takes to get to class.

Contact Environmental Health Office for guidance

While they can’t tell you to skip class, the Environmental Health Office can tell you which areas of campus may still be covered in ice or that may be difficult to navigate. They also can provide alternative routes to buildings, if needed.

If you must go outside, use a human guide

To avoid injury, walk with someone if you must go outside. This reduces the risk of injury. If no friends are able to walk with you, ask for an escort from campus security. As someone once told me, it is much easier to help a person than it is to have to find a person when they are reported missing.

Protect important items in sealed plastic bins

While this wasn’t related to weather, my friend had to deal with a pipe bursting in their dorm room and water getting everywhere. Luckily, they thought to put all important items in plastic bins so they wouldn’t be ruined if the dorm room turned into a swimming pool. For larger technology such as a desktop computer, I balance an umbrella over it in case of damage.

Have someone verify that all windows are closed

It helps to have an extra pair of eyes make sure that everything is secure. I often can’t tell when something is closed all the way, so having someone confirm that for me is reassuring. The last thing I want is a winter wonderland in my room!

Block windows, if necessary

Lighting is nature’s strobe lights for me, and strobe lights trigger migraines, so in the event of a severe storm, I prop things against the window to make sure I can’t see any lightning. I normally use an inflated air mattress or cardboard.

If the power goes out

Because of my vision impairment, I am used to navigating areas that I can’t see very well. In order to make things easier, have a flashlight or other handheld source of light that is not on a phone (the flashlight drains battery). Contact the resident advisor and/or resident director to notify them that you are in the building and may need assistance in case of evacuation. My school often utilizes their emergency alert system if the power goes out in more than two buildings, so watch for text messages, phone calls, or emails for further instructions.

Go to an off campus location

If extreme weather is likely to last more than a few days, I have my mom come pick me up and drive me home. My home is about three hours from my college, and I am very grateful that my mom is able to help me. For students who may not be so close to home, find a friend who lives locally and go stay with them. A couple of my friends have even stayed in a hotel near campus when there was no heat in their dorm room.

While extreme weather can be very stressful to students living on campus, hopefully these tips will help you be prepared for the next hurricane or blizzard to come your way!

How To Pick Housing

Welcome! In this series, I will discuss how to start the semester off right, with all of the tools and tricks I have learned. Topics covered will include scheduling, navigation, textbooks, and more. If you have a specific request for a topic, please comment below and I will do my best to accommodate your request. Today, I will be showing how to select housing. 



I just finished filling out my housing application for next year to live on campus, and it was surprisingly easy. Now that I have learned a lot about what to ask for and what dorm is best for me, it’s been a painless process. Here are a few things I have learned about choosing housing. 

Note-  This post assumes that you already have a Disability Services file or will be creating one.  For more information on DS files, click here

Disability housing

Because I have a chronic migraine condition as well as low vision, I had my doctor certify that I have a disability and fill out a form that Disability Services and Housing requested. The questions ask if my disability is chronic, if it is a disability under the ADA (which yes, low vision and chronic migraines qualify as), and what housing accommodations my doctor would recommend. In my case, I have recommendations for a climate controlled dorm that is quiet and that can be made completely pitch black. It also requests I be in a single room, meaning no roommate, and be in close proximity to the Resident Advisor, or RA. 

Special housing area

My freshman year, my building had several students with disabilities and had extra staff available at all hours. These dorms also tend to be more quiet and staff are likely more experienced with handling medical emergencies. This housing is NOT considered discrimination, because it is to help students thrive in the environment that suits them best. Talk with housing about what dorm may be best for you.

Should I have a roommate?

I don’t have a roommate because of my migraines, but I have three suitemates I share a living area with, and last year I shared a bathroom with the RA. I usually haven’t needed help with anything while I am in my dorm. Another one of my friends with low vision has a roommate, and says that they help locate things and be a human guide when needed. A different friend with low vision insists that they are fine being in a single room and just asking their suitemate if they need something. So, you don’t have to have a roommate if you have low vision, but if possible, I would have a roommate you already know as opposed to a total stranger that may not know how to help you, or worse, take advantage of you.  Some people are uncomfortable with a roommate that needs help, or come from a different culture where they don’t know how to interact with someone with a disability, or don’t want to interact with someone with a disability. It would be nice if everyone accepted each other, but that won’t always happen.

Different dorm layouts

Dorm buildings on my campus have several different layouts. There is the hall layout, where rooms have one or two people and the entire hall shares a bathroom area. There is the suite layout, where two rooms connect by a bathroom and each room has one or two people. And then there is the apartment layout, where there are two to four bedrooms that share a living room, kitchen, and bathroom.  
My friend lived in a hall style dorm last year and liked not having to worry about cleaning the bathroom, but said it was loud because they could hear people flushing the toilet and talking at all hours of the night. Their room was nicely sized and I was able to navigate easily.
I lived in a suite style dorm my freshman year, which was two single rooms and a bathroom. My room was freakishly small, to the point where I had three visitors and had to have one stand in the bathroom because there wasn’t enough floor space. The arrangement wound up being very helpful though- I had a medical emergency in the middle of the night and the RA was able to get to my room quickly by running through the bathroom.
This year, I live in an apartment style dorm, and like the wider layout and more space to move around. My suitemates don’t have me clean because they think I will just mess the apartment up even more- mostly because I spill things without realizing, and I tend to miss dirty spots. It costs the most to live in an apartment style dorm, and this is restricted to students in their second year and above, but it is very quiet.

How do you lock the door?

Check how the doors are locked and unlocked. I’ve always been able to unlock doors with my student ID, though some older dorms require a key. At another college, the doors are opened by putting in a number on a keypad that is difficult to see. Bottom line, make sure you can open the door. 

Locked out?

Locate the neighborhood services desk and learn how to navigate there with and without a blindness cane, since you never know the circumstances in which you will be locked out. For example, I was waiting outside the door for my brother when he came to visit, and when he came to meet me outside, he closed the door behind him, and didn’t grab the key on the table. So I got to walk with him to the neighborhood desk without my cane, and barefoot. Another friend got locked out after she took a shower and had to walk to the desk in a robe and with wet hair. It can happen at any time.
The best way to prevent being locked out is to wear your key. I am not talking about the freshman orientation lanyard, either. I wear mine in a lanyard that I got from Charming Charlie, and it’s just as easy to throw in a backpack or a pocket as it is around my neck.

Room location

My freshman year, I was offered the option of living in a dorm on the first floor of a building, right next to the door to enter the building. There was no elevator in the building, and it would be loud as most freshman housing was. Also, it was very easy to look into my window or tap on it from the outside. This was not ideal. Make sure that the dorm location makes you feel safe, and that you can get out quickly in an emergency.
I lived on the fourth floor of my building freshman year in the middle of the hallway. While no one could look in my window, I had lots of difficulty going down stairs and getting out in emergencies.
This year, I live on the first floor, but my window faces a secluded area. I’m also right next to the emergency exit, which doesn’t open often, so I don’t have to worry about doors opening and closing all the time. This is an ideal location for me.
Also check the building location in comparison to your classes. My classes are all within a three minute walk of my dorm, with one exception, which works well for me.

Furniture

My freshman dorm had a bed, desk, chair, dresser, and a closet with no door. My dorm this year has a bed, desk, chair, dresser, and closet with a door. I added furniture rounders to the sharp edges so I wouldn’t run into them. Ask in advance what furniture comes with the dorm so you can plan to make (temporary) modifications if needed, or request different furniture, such as a lower bed, wider desk, lowered closet rods, or small dresser.

What’s included

Is cable and internet included in the cost of living in your dorm? What about electricity? Water? Heating and cooling? Laundry? Is laundry in your building?  Luckily, all those things are included for me, but it never hurts to ask. Also ask if the dorm is climate controlled, or if you have to bring your own air conditioner to school. While my school has all climate controlled dorms, not all schools do, especially ones with historic buildings.

Tour the dorm

If possible, tour your dorm building or a model room before moving in so you can hear if there will be a fan constantly buzzing or people stomping on the floor above. Also check if the floor is even all around- my friend at another college had their floor randomly dip in the middle, and it causes several visitors to trip because they don’t see it coming.
With all of these tips, you will be set for move in day and ready to live in your new dorm! 

How Do People With Low Vision…Handle Fire Alarms?

They can happen at any time. It can be 1:30 in the morning the night before a major exam. It can be pouring rain outside when someone burns popcorn. Or sometimes, it can just go off for no real reason at 5:30 in the evening, which is the exact circumstances that inspired this post. Regardless, whenever the fire alarm goes off, everyone needs to know how to evacuate and get out safely, but that is even more imperative for people with low vision. Here are some tips I’ve gathered from being in more than my fair share of fire alarm incidents.  While this post can be helpful for several other types of disabilities, I am focusing on blindness and low vision.

Have all your key things ready to go

In my case, I keep a winter coat and robe hanging next to my door, right by my blindness cane and key card, with a pair of slip on shoes underneath. That way, I just quickly unhook items and throw them on as I go. I also recommend taking these items into the bathroom with you when you take a shower, as well as a quick change of clothes in case the alarm goes off while you shower!

Know how to navigate stairs safely

This year, I only have to walk down three stairs to get out of my building, but last year I lived on the fourth floor, so I had much more stairs to walk down, and I’m not known for walking particularly fast.  I would practice walking up and down them early in the semester, with and without my cane, to make the navigation processs easier.

Have an escape buddy to help you get out of the building

 I had my neighbors last year help me down the stairs and let me know when to turn to get to the next staircase, and everyone on my hall knew how to help me if the normal people weren’t able to. My roommates this year guide me down the stairs and across the street to wherever I need to go.  If you’re trying to explain to someone how to be a guide for you, check out my post on how to be a human guide.

Report to building staff that you are safe

 I usually text my resident advisor that I got out of the building and to let me know when it is safe to return.

Have a safe location you can go to while the incident is dealt with

 Last year, I would walk down to the campus 24 hour Starbucks. Right now, I’m in the library across the street, but I’ve also hidden in the convenience store next door to my building, depending on the time of day.

Talk to friends about letting you come to their dorms during an emergency

 I have gone to dorms of friends during fire alarms as well, since they know I don’t like sitting outside surrounded by flashing lights. Have a couple of backup places you can go as well.

Ask about a fire safe room in the building

 If you can’t evacuate, some colleges have a fire safe room you can stay in until you can receive help. While my building does not have one, I know of at least one college in Virginia that has this available for students. Ask if one is available when you talk to the college about disability housing!

If you can’t evacuate, call for help

 If for whatever reason you can’t evacuate, call your local emergency number (911 in the United States), campus police, and building staff. When calling, state your name and your building name as well as your room number and what floor you are located on. Mention that you have blindness or low vision, and are unable to evacuate, and listen to the authorities for further instructions. If applicable, mention you have a case with your state department for vision loss (called Department of Blind and Visually Impaired in Virginia) or disability. Also contact building staff to let them know you are still inside and have called for help.

If the fire incident originates from your living area, make sure you are able to talk to the fire department

One time, the fire alarm went off in the kitchen adjacent to my dorm and I was woken up by the fire alarm. When I came back, I was believed to have been the one to have caused the problem. Do not let people try to blame you for causing the alarm to go off, and remind them of your vision loss. It also helps to remind them that you were doing something else when the alarm went off- sleeping, for example

Conversely, if you are the one to set it off

Make sure to talk about your vision impairment and work with the fire department to figure out a solution to prevent more incidents like this from occurring. Having your case manager might be helpful here.

Fire alarms are great at alerting people to emergencies, even if they can be an inconvenience at times. No matter what, do not tamper with or modify safety equipment in your dorm, as this can be dangerous as well as against state law. However, with these tips, hopefully your next fire alarm experience will go smoothly and you won’t be the person running out in their underwear with no idea where they’re going. And if you are…well, it happens.