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.
The Migraine Warrior 