June is National Migraine and Headache Awareness Month!
June is National Migraine and Headache Awareness Month. My daughter, Maddie, has had the invisible disability of chronic migraine for many years, which persists despite excellent medical care, and which is not just a headache. She also has had several mild concussions since the onset of her migraine disease, and due to this, she no longer plays sports even though she is a talented athlete. Maddie has an accommodation plan at her school due to her chronic pain. This has been a difficult spring semester for all students, and it’s been especially hard for graduating seniors with disabilities who have IEPs or 504 plans. I so admire their, and her, resilience and persistence:
Hi! My name is Maddie Goldsborough, and I have chronic migraine. I’m an 18-year-old high-school senior, and hopefully a soon-to-be college freshman. I have had chronic migraine since I was 13. It has taken me a while to realize that my migraine pain spikes are mostly triggered whenever the pressure changes, which my neurologist has confirmed. In part I chose my college because it’s in Southern California, a part of the U.S. that has some of the lowest variability in barometric pressure.
Migraine is a lifelong invisible disease. I see my chronic pain, yes, as awful, but also as a strength. I am so much more motivated to achieve my goals because I’m in discomfort either way, so I focus on trying to do what is important and makes me happy. It’s such a helpful thing to focus my energy on living my life the way I want to instead of dwelling on my situation. I live passionately and love deeply, and I consider myself lucky to be in a place to do so, even if it’s in part motivated by my pain.
In school, I have an accommodation plan but still have to advocate for myself every day. Moving to online classes has been a challenge because spending time on screens makes my head worse, but I’ve gotten through it, and we’re almost done! I’m so excited to graduate, but I’ve found myself mourning the loss of the celebrations I was looking forward to all year. My piano recital and music composition presentation will both be online. Although I’m glad they’re still able to happen, I would clearly rather have them in person so I could share music the way I love to. I also sing in my school’s a cappella group and have been arranging short pieces of music for us during quarantine. It’s really rewarding to hear my work performed so quickly after I write it, and to have a video to send around to people.
Right now, I’m mostly trying to keep myself from letting my grief get in the way and stop me from functioning. It’s a really upsetting time, and because pain is also an emotion, and I have it all the time, I’ve found that my other emotions are often heightened. It’s a blessing and a curse, and it can be distracting. But it can also mean I appreciate my life in a completely different way than before I had this disease.
If you’ve just been diagnosed with migraine and you’re feeling overwhelmed, reach out to people who also have this disease! In my case, I found close friends through Miles for Migraine teen camps. Friends who understand exactly what you mean when you say you’re “out of spoons” or had a terrible brain fog day are so important. So as always, sending many spoons! -Maddie
Maddie is referring to the frequently-used “spoon theory” metaphor for managing the limited energy and focus of those with chronic medical conditions. We will be sorry to lose her to Southern California (whenever that happens), but we support her in this decision, since it is best for her. She will defer until the spring or even next year if distance learning continues.
Connecting with other students and families who have chronic migraine or daily persistent headache through Miles for Migraine has been so helpful for Maddie and for my wife and me as parents. I cannot express how great this organization and group of kids and families has been for Maddie and all of us, and how much we have learned from each other. Connecting with others who are dealing with the same or similar disabilities as you and your family is so helpful. We felt isolated before doing that.
Even with an IEP or 504 plan, and even with helpful assistance in and out of school, many students like Maddie still need to advocate for themselves with individual teachers. That is especially so for those who have “invisible disabilities” that are not obvious like migraine, often leading skeptical teachers to question plans. Self-advocacy is even more important as students transition to college or other post-secondary activities. At first this was frustrating for her and us, but we soon realized that it leads to tenacity, resilience and persistence. One of the things we have learned from our disability community is that many or even most students with disabilities have grit in spades. Emerging data shows that this is one of the best predictors of how well one does in later life.
We at McAndrews, Mehalick, Connolly, Hulse & Ryan have helped thousands of students with disabilities, including chronic migraine and the after-effects of concussions. We offer free consultations in special education matters. We have continued our full-time work during the pandemic and are always available to assist, during or after the quarantine, online or live. In appropriate cases, we agree to represent families on a contingent basis, meaning that the family ends up paying nothing or very little, due to the fee-shifting aspect of the federal civil rights statutes in education law. Please feel free to contact us, and please stay healthy and safe!