30 Things About My Life with Migraine

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Ever wondered what life is like for me? Kerrie Smyres at The Daily Headache has created a list of questions for people to answer to share the similarities and differences in their stories with migraine and other headache disorders. This is my story.

1. My diagnosis is: Chronic migraine with aura, intractable migraine.
2. My migraine attack frequency is: Approximately 3x per week. This is down from the period of time in my life when I was having migraines every day.
3. I was diagnosed in: August 2004.
4. My co-morbid conditions include: Obsessive-Compulsive Disorder, Panic Attacks, Generalized Anxiety Disorder, Depression, Hypothyroidism, Vitamin D Deficiency.
5. I take 3 medications/supplements each day for prevention and anywhere from 2-10 medications/supplements to treat an acute attack. It should be noted that the ~10 medications alluded to in the previous sentence are not taken all at once. I have around 10 medications available to me for acute attacks. Usually, I take around 5 medications during the course of an acute attack.
6. My first migraine attack was: in August 2004. I was 19 years old and about to start my sophomore year in college at UMASS Amherst.
7. My most disabling migraine symptoms are: severe head and neck pain, nausea and vomiting, extreme sensitivity to light/sound/smell, and intense vertigo.
8. My strangest migraine symptoms are: Increased urination, phantom smells (smelling things that aren’t there), visual disturbances (flashing lights, colored lights, etc), numbness in my face/extremities. During one attack, I was reading a book to my preschool classroom and the words that were coming out of my mouth were not the same words that I thought I was saying. This is often referred to as “transient aphasia.”
9. My biggest migraine triggers are: Weather (particularly drastic changes in temperature or impending precipitation of any kind), heat, sunlight, fluorescent lights, certain foods (including but not limited to chocolate, aged cheeses, nitrates, and artificial sweeteners), strong scents/odors (including but not limited to floral scents, citrus scents, most perfumes/colognes, most cleaning products, and smoke from burnt food and/or cigarettes), crying and emotional distress.
10. I know a migraine attack is coming on when: I usually get visual disturbances before anything else. As soon as the flashing lights and colors appear, I know that a migraine is imminent. On the occasions that I don’t get that warning, pain in the left side of my forehead and neck coupled with nausea is a good indication that things are about to get started.
11. The most frustrating part about having a migraine attack is: I can’t seem to do anything about an attack once it has started and I have to shift my focus from whatever I am currently doing/about to do and go into survival mode. Not attending to the migraine attack is not an option. I never know if the medication will work or how long it will take to work or how many doses I will need. My life gets put on hold indefinitely until the attack is over.
12. During a migraine attack, I worry most about: How long will this attack last? Will the medication work? How long will it take to work? Do the people I’ve had to cancel on hate me now? Am I going to have these for the rest of my life? What if the pain never stops?
13. When I think about migraine between attacks, I think: When will the next migraine attack begin? Will I ever be able to have a reliable social life or career again? How many more people have I alienated with each new attack? How long will people be willing to put up with me?
14. When I tell someone I have migraine, the response is usually: At present, because of my advocacy work, most people already know that I battle migraine. They often say things like “I’ve had a migraine before but they’re not nearly as bad as yours.” Sometimes, they say “Your migraines wouldn’t be as bad if you didn’t spend all that time writing and talking and thinking about them.” During a migraine attack, some folks say “Again?!” or “It’s so hard to watch you suffer.” (I’ve got news for you…experiencing a migraine attack is pretty darned hard for me.) Occasionally, someone will say “What can I do for you?” or offer suggestions. The best thing for people to say is “I’m sorry you’re hurting. I hope you get some relief soon. Is there anything I can do to make you feel more comfortable? I’ll leave you alone but I love you and I am here for you.”
15. When someone tells me they have migraine, I think: I tell them that I battle migraine as well. Then, I tend to ask questions to find out whether they truly suffer from migraine or are using the term to describe a headache. I also try to suggest things that have helped me, such as seeing a certified migraine specialist or joining a support group.
16. When I see commercials about migraine treatments, I think: They are misleading. They often make it seem as though using particular medications or treatments are cures for migraine. Listen closely here: there is currently NO CURE for migraine. We only have hope of managing migraine right now. Also, the commercials fail to mention how difficult it is to get your insurance to pay for treatments such as Botox injections, which otherwise cost thousands of dollars every three months.
17. My best coping tools are: Medications. Ice packs. Heat packs. Caffeine. Ginger Ale. Peppermint. Eye mask. Migraine-specific sunglasses. Ear plugs. Air conditioning. Laying down in a dark room. Mindfulness. Meditation. Dialectical Behavior Therapy.
18. I find comfort in: Music (especially James Taylor and George Harrison and Simon & Garfunkel.) Reading. Watching/listening sitcoms (especially The Middle and Will & Grace) and silly movies (especially Sex and the City.) Hugs. Blogging. My support groups. Coloring. Prayer. My boyfriend Ian.
19. I get angry when people say: “It must be nice to be able to lay around all day and do whatever you like.” That is, in fact, the exact opposite of what I do. I was a preschool teacher for many years and it was never just a job to me; it was a lifestyle. I miss working with children every single solitary day. I had to actually grieve the loss of my job and my currently inability to work outside the home. I also get angry when people say things like “It’d be so nice to have just one day when you didn’t have a migraine and weren’t anxious or depressed.” It’s the tone of this one that matters, as though the person is saying it would be nice for them if they didn’t have to deal with all my “nonsense.” It is one of the most hurtful things a person can say to me…or anyone suffering from any kind of illness. Don’t be that person.
20. I like it when people say: I understand. Me too. You are trying/working so hard. Is there anything I can do to make you more comfortable? I hope you get some relief soon. I love you. I’ll leave you alone but I am here for you. Take care of yourself. It’s okay.
21. Something kind someone can do for me during a migraine attack is: Be very quiet. Don’t cook food that smells a lot and keep any other odors as far away from me as possible. Offer to get my meds or anything else I may need from the pharmacy. Get me a Dr. Pepper or another caffeinated beverage (bonus points if it’s a McDonald’s Coke!) Warn me if you’re going to turn on any lights or anything that lights up. Let me sleep. Give me a hug. Lay quietly with me and watch T.V. until my meds kick in.
22. The best thing(s) a doctor has ever said to me about migraine is: I won’t give up on you. There are still lots of things for us to try. You try harder than anyone I know. Migraines are (expletive) hard!
23. The hardest thing to accept about having migraine is: I may have to live with it for the rest of my life. I never know if I will wake up in pain or how much I will be able to do that day. It has also showed me that people aren’t always what they seem and I have lost people that were incredibly important to me because they “could not deal with my migraines.” That was heartbreaking.
24. Migraine has taught me: I am much stronger and more resilient than I thought possible. I can turn my pain into advocacy and help others. Never judge someone else’s struggle, even if you’ve gone through it yourself. Empathy, compassion, and humor are of utmost importance.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: There are three, actually!

a.) “This is uncomfortable but I can tolerate it and it won’t last forever.” ~Tom N-D

b. “It is never too late to be what you might have been.” ~George Eliot

c.) “Won’t you look down upon me Jesus/Won’t you help me make a stand/Just got to see me through another day/My body’s aching and my time is at hand/I won’t make it any other way…” ~James Taylor Fire and Rain
26. If I could go back to the early days of my diagnosis, I would tell myself: Things are going to get better. Hope for a cure and learn how to cope/manage. You are going to meet so many incredible people on this journey who will change your life. Give all possible treatments a chance…or at least think long and hard about each one before deciding it’s not for you. Apply for disability and/or assistance services NOW…it’s nothing to be ashamed of.
27. The people who support me most are: My parents. My boyfriend Ian. My mentor/former college professor John Stifler. My two best friends, Betsy and Megg. My fellow advocates and support group friends. My team of medical professionals is pretty cool, too.
28. The thing I most wish people understood about migraine is: Migraine is there even if you can’t see it. It is part of my life every single minute of every single day. There is no cure and I have no way of knowing whether I will battle it for the rest of my life. It makes me feel sad and angry and anxious and depressed and frustrated. A lot of times, I feel guilty or am scared that people will leave me behind because I can’t do certain things.
29. Migraine and Headache Awareness Month is important to me because: I need others to know that there are people out there like them. I need people to know that things can get better. I need doctors and researchers and insurance companies and the government to understand a patient perspective. I need family, friends, loved ones, and acquaintances to know how hard I am trying and how challenging it is to live with chronic migraine.
30. One more thing I’d like to say about life with migraine is: It is hard to remember this but some of the most amazing things that have happened in my life occurred after I began battling chronic migraine. My life is still important and worthwhile. I am trying my best and I will continue to advocate for the rest of my life, even if my migraines should unexpectedly and suddenly disappear. Lastly, please don’t ever discourage anyone from telling their story. It takes great courage to tell people what we go through and, if you’re hearing our story, we trust you to support us and not to hurt us. We don’t ask that you understand everything we say. We just ask that you try to.

Check out http://www.thedailyheadache.com/30things to share your own experience with Migraine, Cluster Headache, New Persistent Daily Headache, Chronic Daily Headache, Tension-Type Headache, or a Headache Disorder by June 29, 2015 for a chance to win a 30-minute coaching session with the wonderful and talented Kerrie Smyres OR your choice of any pair of indoor TheraSpecs. Be sure to check out The Daily Headache on Facebook and follow them on Twitter: @tdhblog

MIGRAINE WARRIOR OF THE WEEK #2: SARA RICHARDSON

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Photo credit goes to Sara Richardson. Design credit goes to Michelle Tracy

Photo credit goes to Sara Richardson. Design credit goes to Michelle Tracy

Welcome to “WARRIOR WEDNESDAY” and our second “Migraine Warrior of the Week!” As explained in a previous post, each Wednesday a different migraineur will be featured on this blog. Any pictures that are provided, along with their answers to a questionnaire will be posted here, with the hopes of providing alternate perspectives with regards to migraine and other headache disorders. These people battle migraines with determination and bravery and deserve to be celebrated and spotlighted for the way they live their lives despite chronic illness. Some “Warriors” will make mention of their personal efforts to raise migraine awareness: blogs, websites, Facebook pages/groups, books, presentations, etc. I encourage them to do this because I want everyone to have access to as much information as possible. I encourage you to take a moment to peruse whatever they are doing to help and to consider what you, personally, can start doing to make migraines visible and to stop the stigma associated with chronic invisible illness. 

*The content of the following interview does not necessarily represent the views and/or opinions of this blog or its creator. The content of the following interview only represents the views and opinions of the person who filled out and submitted the form. This content is not intended as medical advice and no person should ever start, stop, or change a treatment plan without the express permission and supervision of a trusted and appropriate medical professional. Some treatments that work for one person may not work for another and vice versa. This website encourages its readers to keep their minds open regarding possible treatments and to make sure they discuss all questions and concerns with a trusted and appropriate medical professional. No one pays to be a part of this project, nor do they receive compensation.*

MIGRAINE WARRIOR OF THE WEEK: SARA RICHARDSON

Tell us a little bit about yourself…share as much as you feel comfortable sharing.

What’s your name? Sara Richardson

When is your birthday? Dec. 19, 1971

How old are you? 42

Where do you live? Clear Lake, IA

What is your relationship status? Engaged

Do you have children? No.

At what age did you have your first migraine? 12.

At what age were you diagnosed? 15.

Are your migraines episodic or chronic?

Chronic Migraines, daily headaches, silent migraines, status migraines.

Describe a typical migraine for you. What does it look like/feel like? What symptoms do you experience? What kinds of activities are limited/impossible for you during a migraine attack? 

When I have one of my bad ones coming on, I have pain in the back of my head (at the base of my neck) and then I also begin to get confused.  The worst one that I have ever had, I didn’t know who my mother was.  I also lose some mobility – I get kind of dizzy and need to lay down.  Since I don’t know what I should be doing when I have these, I pretty much can’t do anything – except lie in bed and try to get some rest.

People tend to associate migraines with pain in the head. Other than head pain, what would you say is the number one symptom of your migraines that is the most debilitating?  Confusion.

What are your migraine triggers? 

Nicotine, caffeine, sulfites, nitrates, chocolate, aspartame, cheddar cheese, pork, sometimes dairy, sometimes citrus, heavy cloying smells, sometimes the sun (too bright), fluorescent lighting, weather changes, sometimes yeast……it goes on and on.

What treatments have you tried to manage/control/cure your migraines? Which have been the most and least effective? (Include medications, Botox, trigger point injections, herbs and supplements, surgeries, acupuncture, massage, cranial-sacral therapy, Reiki, physical therapy, exercise and dietary adjustments, and anything else you have tried.)

Medicines, change in diet, surgery (I have a PFO in my heart to block a hole), biofeedback, chiropractor, physical therapy, all sorts of different doctors, and an occipital nerve block.

Most effective – medicines and diet

Least effective – biofeedback and occipital nerve block

How have migraines changed your life and the life of your family and loved ones? 

No one knows if they can count on me to be there for anything because I never know how I am going to be feeling on any day, and if I am there – they also know that I may have to leave or lie down at any point in time.

What emotions do you associate with your migraines?  

Sadness, tiredness, depression, frustration.     

What is the worst thing a person can say or do during a migraine attack? 

Oh, you can’t be in that much pain – just keep going and it will go away.  (My mother uses this one a lot)

Give non-migraine patients some tips on how to be helpful, both during an attack and in everyday life, with regard to migraines, chronic pain, and invisible illness.   

During an attack – help me to get home, and to take my medicine.  

In everyday life – ask if you can come over because you know that they may not be able to get out of the house or tell them if you are going somewhere (i.e. – grocery store) and ask if you can pick anything up for the migraineur.

If you could convey one thing to the general population about migraines, what would it be?  

IT IS NOT JUST A HEADACHE!!!

Do you participate in any advocacy work for migraines? Is there a link (or links) that you would like to share, such as for a blog, Facebook page/group, or website? 

I have some support groups online that are for people with either/both migraine conditions or chronic pain on Facebook – Chronic Migraine Awareness (there is both an open forum – for the public, and a closed one (for people with chronic migraines to vent safely) and Purpose in the Pain Pen Pals – which is a pen pal group for people that have chronic pain to communicate with others through messages and the mail.

Do you battle any other diseases/illnesses/disorders other than migraines? 

Not really 

Is there anything else you would like to share? 

Migraines are very common, however chronic migraine is worse than just about anything.  When someone who has chronic migraine has one of their attacks, they don’t know how long that will last, how bad it will be, or how many people we will disappoint.  When we have a migraine attack, we feel very alone and can get really depressed.  Also, one of the worst things to say to someone with chronic migraine is “Oh, when I get one I take some over-the-counter medicine and it is fine after about an hour.  Have you tried that?”  Of course we have tried that!  That’s one of the very first things that we have tried.  Now, I have medicine that most people who have episodic migraines have to go to the hospital to get (when theirs get too bad for over-the-counter medicines to help) that I give to myself.   

The medicines that I have are injections and they can hurt badly when I have to give myself a shot.  So I end up trying not to take my medicine, because even though I know that it will make me feel better (most of the time) it will hurt almost as much as my head already does.  Or, it may NOT work, and that means that I will have to go to the E.R. Luckily for me though, I go to the E.R. that is affiliated with my G.P. Dr. and have a plan of action of what needs to be done when I have to go there – AND THEY ACTUALLY FOLLOW THAT PLAN!!  There are a lot of migraine patients that when they have to go to the E.R. because their medicines aren’t working for them, they get stuck there for hours with no help, they aren’t believed that they are in as much pain as they really are, they are told that the medicine that the patient says will work – the doctors won’t give them – so the patient ends up getting some medicine and maybe an IV of fluids and then are sent home.  What would you do if you were asked by a doctor, “What is the medication that has worked for you in the past?”  And when you tell them the medicine that worked……your answer given is this, “Oh.  We won’t give you that!  We don’t give that to migraine patients.  You are just a drug seeker, so I won’t give you that.”  And this is what happens to you – even if you do have a plan of action from your doctor (on his/her stationary) that states for you to follow this plan. 

Think about it…………………………STOP THE STIGMA!!!   WE ARE NOT DRUG SEEKERS, WE JUST WANT THE PAIN TO GO AWAY!!!!

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Thanks, Sara! Keep your eyes on this blog daily for new content and every Wednesday to catch the newest “Migraine Warrior of the Week!”

A Vanilla Cupcake and a Whisper

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I’m about to turn the big 3-0 in October which means my Facebook news feed basically consists of sonograms, profile pictures of toddlers, and people “checking in” to their new houses. Occasionally, a picture of a ring or lavish engagement photos will surface. Basically all of my friends are engaged or married, have kids, and are buying houses. We all know what happens to friends when they go through that stage in life…people tend to go off the grid for a bit, enmeshed in their new “grown-up” roles. People particularly don’t have time to deal with chronic illnesses. They have a 3-year-old. Or they’re a newlywed. Or they’re trying to paint the kitchen. They have a lot on their plates and they don’t want a side order of “sick people”. That’s what makes the story I’m about to tell you all the more outstanding.

My boyfriend and I are friends with this couple that we’ve known since before they were married. We were at the wedding, we celebrated the birth of their daughter, and when her first birthday rolled around, we happily drove to Connecticut to attend. The plan was for everyone to eat pizza and cupcakes and to let Addie open her presents and then she would go to bed and the grown-ups would hang out, drinking cider and beer and playing “Cards of Humanity.” It was a far cry from the frat parties and clubs I used to go to when I was in college but I dare say I had a better time at the one-year-old’s birthday party. Addie’s parents are a couple named Scotty and Mel and you will not find two nicer people. In most cases, people like one half of a couple more than the other, even if only by a small margin, but Scotty and Mel are the exception. Wonderful friends, wonderful parents, wonderful travel companions. You really should meet them sometime. However, as they prepared for their first child’s very first birthday, they once again proved themselves to be the exception to the rule.

Mel contacted me via a Facebook message before the party to make sure of my allergies. I thanked her profusely for asking and told her not to worry about it, that I would make sure I brought something I could eat. I didn’t want to put anyone out. Besides, I reasoned, she had other things to think about.

The big day finally came and pizzas lined the kitchen table. I was glancing at them, sizing them up and trying to figure out if they contained any of the cheeses that trigger my allergies, when Mel walked up beside me and said “They only have mozzarella and provolone cheeses on them. No Asiago, Parmesan, or Romano. I checked.” She smiled as she said this and there was no trace of aggravation in her voice. She also spoke to me in a normal speaking voice. What I mean to say is, she didn’t raise her voice and risk embarrassing me but she also didn’t whisper as if I should be ashamed of my dietary restrictions. “There’s one without any meat, too!” she said as she walked over to clean up a spill. She had remembered my “no pepperoni/sausage/ham/any kind of delicious meat you might get on a pizza” restriction.

Then it was time for the birthday girl to have us sing to her and eat her very first cupcake. Mel brought out a beautiful tray of chocolate cupcakes and placed one in front of Addie, who loved it. Secretly, I was a little bummed. Chocolate cupcakes. Chocolate is a definite no-no for me. It may as well be called Insta-Migraine. I sighed inwardly and straightened up. Now was not a time to be selfish. There was no reason the birthday girl or anyone else at the party should have to adhere to my dietary restrictions. As we finished watching Addie enjoy her very first cupcake, trays of cupcakes were passed around to the grown-ups. Including a tray full of vanilla cupcakes with vanilla icing that Mel had made especially for me. I almost cried. It was *SO* nice not to be left out of every treat. I could be a part of the party and not stuck in the corner munching on pretzels while everyone else had birthday cupcakes. I could participate! There was still a slight nagging feeling, though. It’s hard to feel different from everyone else all the time and I was very aware that I was holding a white cupcake while everyone else’s were brown. I pushed the feeling away. I was being silly.

Scotty reappeared from putting Addie to bed (a feat which he accomplished absurdly quickly) and he came and sat down next to me. “Mind if I swipe one of your cupcakes?” he asked, smiling. I held the tray out to him. He leaned in, as if to share a secret. “I actually like vanilla better anyway,” he said quietly, taking a bite. In that moment, I was no longer different, no longer left out, no longer conspicuous, no longer the sick girl with all the allergies and triggers. I was Michelle, at a party, enjoying cupcakes, games, and friends. I was normal. It’s not easy to make someone with a chronic invisible illness feel normal. Some people just don’t care and some people are so overly-concerned that it’s almost more trouble than if they’d just left things alone in the first place. But Scotty and Mel had struck the perfect balance: they didn’t freak out or loudly discuss my needs in front of the other guests. They made an extra batch of cupcakes so I wouldn’t be left out of the celebration. Scotty ate one of “my” cupcakes and told me they were his favorite anyway, which allowed me to feel less conspicuous and less like a burden for having my hostess whip up an extra batch of cupcakes.

These are such simple things. I don’t even know if Scotty and Mel realized they were doing them at the time or rather how much their words and actions would mean to me. In the grander scheme of things, they took time out of planning their first child’s first birthday party to consider my special needs. This is not something I will soon forget. All it took was a vanilla cupcake and a whisper to make me feel included, normal, and well-cared for. The next time it seems like one of your chronically ill friends “needs too much’ or “has too many restrictions”, just remember how little it can take to make a HUGE difference in their lives.

I’ve Always Depended on the “KID”-ness of Strangers-Talking to Children About Chronic Migraine

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A canvas painting that the School Age kids made for me, using my favorite colors

A canvas painting that my students made for me

 

*Names and identifying details have been changed to protect the anonymity of the children mentioned.*

It’s funny: having a chronic invisible illness can be incredibly frustrating, especially since other people seem to have so little compassion for a disease they can’t see. However, children haven’t learned to be skeptical yet. Just the way they believe in the Tooth Fairy without ever seeing an actual person, children believe in chronic invisible illness. I am certainly not equating a chronic invisible illness with a fictitious character; I am merely pointing out that children believe what you tell them, even if they can’t see it.

I’ve been a childcare provider for 19 years and a teacher for 14 years. Being certified as a Preschool Teacher, the majority of my time was spent with children ranging in age from 2.9 years old-5 years old. I was also given the opportunity to run an After-School/Summer Program for children grades K-3. Since I was diagnosed with chronic migraines three years after I began teaching, crafting an age-appropriate explanation of my illness was a priority for me. I have always believed in being as honest with children as possible, carefully choosing my words and content to suit their chronological and emotional maturity. To the youngest children, my migraines were dubbed “tummy headaches” (their words) because they were aware of the pain in my head that co-existed with nausea and vomiting. Reassurance that migraines are not contagious was of the utmost importance because children learn at an early age to associate vomiting with stomach viruses and it simply won’t do to have your students frightened of catching something from you.

The most richly rewarding work, in terms of migraine education, came with my School Age kids. They were able to understand more fully and had a great many questions about migraines. After all, they were acutely aware of my absences and had, unfortunately, seen me in the midst of an attack on more occasions than I care to remember. The first line of business was to create an Emergency Room in our Dramatic Play corner (Dramatic Play is teacher-speak for what many people call “playing pretend” or “fantasy play.”) Giving the children a safe space to act out their interests, fears, concerns, and questions would help me identify what they knew, what they wanted to know, and what reassurances they needed. The children knew I spent a lot of time in the local Emergency Room receiving medication to stop the vomiting and (in theory) to ease the pain. With their help, we created one of the most detailed and expansive Dramatic Play areas I’ve ever been a part of. I made every effort to obtain the materials that the children asked for and used as many “real” items as I could get my hands on, forgoing plastic, pretend tools whenever possible. The children planned, created, and implemented the whole ordeal, from the waiting room, to the treatment rooms, to the operating room.

Armed with faux but realistic-looking prescription pads, they learned the correct names of the medications used to treat me and also that they should never use any medications without the supervision and permission of a doctor and a parent/guardian. (“Does Ondansetron make you dance better?” one of the eight-year-olds quipped when he learned the generic name for Zofran, an anti-nausea drug I use frequently.) An I.V. was created, the children learned how to perform a quick and basic neurologic exam, they even used x-rays and CT scans of my head and sinuses with a light table. I’m not sure if you’ve ever seen 15 kids, ranging in age from 5-9 playing together and cooperating, but it’s a rather illusive sight. However, whenever the ER was “OPEN”, everyone was engaged, including me. One of my favorite interactions was when Mary answered the phone and asked the person on the other line if they could hold. She then called for John, who was a native Spanish-speaker, and asked for his assistance with a bi-lingual patient. He came right over and began speaking into the phone, translating Mary’s words into Spanish for the benefit of the fictitious person on the other end of the line.

Over snack time, we discussed what the kids knew about migraines and what they didn’t know. While they internalized all of the information, the factoid that hit them the hardest and came up the most often was my inability to eat chocolate. “You mean you could eat chocolate and eat chocolate and eat chocolate and then, all of sudden, one day you COULDN’T EAT CHOCOLATE?” Mary asked. “That is the saddest thing I have ever heard,” John lamented, shaking his head. One Christmas, Mark’s mother gave me, among other things, a box of chocolate. Mark shrieked “Jeez, Mom, what are you trying to do, put her in the hospital?!” After a few explanations, things were straightened out and Mark offered to keep the chocolate for me. “I don’t want you to go to the hospital,” he said, popping a chocolate into his mouth and grinning.

I eventually developed a pretty good “curriculum” when it came to explaining my migraines to my students. I explained the head pain by telling them to imagine what it felt like when they bumped their heads on a hard surface. Keeping that pain in mind, I told them to imagine someone kept poking them in the spot on their head that got bumped and that the poking occasionally turned to pushing and squeezing. I explained the nausea and dizziness by telling them to imagine how they felt after spinning on the tire swing right after eating lunch or snack. “It’s hard for me to walk sometimes after that. And things look funny. Does that happen to you?” Joan asked. I said that it did. I told them that there was something else called photophobia or sensitivity to light. I told them to imagine how they felt when they walked out of a movie theater into a very sunny parking lot. I told them that photophobia was like that except, in the case of migraines, your eyes didn’t adjust to the light within a matter of minutes. For me, that feeling could last for days. The kids really didn’t like the sound of the fire alarm we used for fire drills; I used that example to explain phonophobia (sensitivity to sound.) I told them to imagine that every sound was like that fire alarm, whether it was the wind blowing or a clock ticking or a person talking or a door slamming. During a migraine, everything sounded loud and hurt my ears. “How do you LIVE?” Michael asked, shaking his head in disbelief. “You are very brave,” added Jessica, looking at me with wide eyes. It was compelling and bizarre and wonderful how receptive these children were to my struggles, how eager to listen and learn and help they were. Frequently, the adults in my life didn’t even show 0.001% of the interest or compassion that my students exhibited.

My favorite interaction came on a day when I had a Level 9 migraine and was being asked by my Director to stay in the classroom until they could find someone to cover. I had just returned from vomiting in the bathroom for the third time when I noticed that Matthew was standing on the block shelf in front of the window. I sighed. Matthew was nine years old and incredibly mature for his age. He knew the rules and wasn’t inclined to break them. With as much strength as I could muster, I said “Matthew, what are you doing? You KNOW you are not supposed to stand on any shelves. Actually, you’re not supposed to stand on anything but the floor.” I looked pointedly at him, squinting through the bright fluorescent lights overhead and the afternoon sunshine pouring in through the window. He carefully climbed down and explained “I was taping construction paper over this window because it doesn’t have a shade. Remember how the shade broke a few days ago?” I nodded. “Well, since we don’t have a new one yet and I know the light hurts your eyes, I’m taping construction paper over it.” He looked at me, hopeful and proud. I teared up, gave him a hug, and told him he could finish if he stood on a chair instead of the shelf. I told him I’d spot him by standing next to him. “My mom gets migraines,” he whispered to me as he taped the last of the orange construction paper to the windowpane. “Thank you for figuring out a way to fix the window,” I whispered back. If only everyone could think like Matthew.