Hello and happy Saturday!
This essay is adapted from my totally-not-even-close-to-done memoir, which will hit the shelves probably never. Or maybe some kind soul will finish it for me after I die? With that said, if you’d like to increase my chances of publishing the darn thing, I’ll happily accept your support in the form of a paid subscription to this newsletter! (Just kidding…unless if you really want to give me money then I’m totally serious.)
Shortly after she was diagnosed with breast cancer, my husband Cory went with his mom to the Susan G. Komen Race for the Cure in Washington, D.C. Years later, he still remembers this day when thousands of people from all around the country and the world descended on the National Mall, shutting down the surrounding roads. Everyone was excited to be there and everyone, without exception, was wearing pink.
These events raise something like $70 million each year for the Susan G. Komen Foundation, which spends less than 15% of its revenue on actually funding breast cancer research. This year’s San Francisco Susan G. Komen walk raised over $300,000.
I’d never been to a Susan G. Komen event, but I vaguely recalled TV commercials of happy people rallying together, wearing pink, looking hopeful. Though I knew that migraine is the under-funded, under-researched, red-headed stepchild of neurological diseases, when I first heard of the San Francisco Miles for Migraine fundraising run/walk, I thought of these Susan G. Komen commercials.
The Miles for Migraine walk I attended a few years back was in October (aka Breast Cancer Awareness Month), in Golden Gate Park. As the event approached, I pictured dozens of bustling booths at the starting line, offering discounts on things like yoga, meal delivery programs, and sunglasses. I imagined massage therapists waiting at the finish line, all of them specialists in occipital acupressure. I also saw myself meeting other migraineurs, all of whom would be around my age and likewise swiftly, whiplash-ingly disabled from high-powered careers. This would be my very first opportunity to meet other people with my disease, despite the fact that I was diagnosed more than three years earlier.
But at the very least, I expected to find this one, very important thing: shade. Because, like many who suffer from chronic migraine, I experience near-constant photophobia, or sensitivity to light.
The walk began at 8:30 am, an ungodly hour for someone who recently gave up coffee in a desperate, last-ditch attempt to control migraines. As I shivered in line for the registration tent, I noted a tent for each of the event sponsors: Nurtec (the new kid on the block), Ubrelvy (hard to swallow), Aimovig and Ajovy (no one likes shots in the stomach), and Botox (we’ve discussed this mouse-exterminating cosmetic before). These are made-up nonsense words, but Aimovig is much easier to say than its actual name, Erenumab-aooe.
There was also a snack tent and a “Spirit Tent,” which offered free Mardi Gras beads and big blank pieces of poster board, for you to “Make a Sign to Thank the Runners/Walkers.” And that was it, eight tents lined up near the empty Golden Gate Park bandshell.
Since my neurologist at UCSF told me about this event the week prior, I had raised about a thousand bucks just by posting a link to my fundraising page on Facebook and emailing a few friends. I was one of only seven people who raised any money.
A thousand bucks was enough to win me another jacket. The jacket I got from the previous year's virtual event seemed nice at first, until I discovered that it had a BIG, cheerful brain (wearing tennis shoes and sunglasses) screen-printed across the entire back. I still can't quite explain my hatred of The Brain. Maybe it's because I don't find its demeanor to be at all similar to how my brain feels. Or maybe I prefer calling attention to my neurological condition only when strictly necessary, and certainly not every time I wear a jacket.
But this year’s jacket, as shown on the website, seemed more promising. The description said it was microfleece, and I don't think you can screen print on that stuff. So I felt optimistic as I waited for my official-looking race bib with a big number on it, my jacket, and a bag full of cheap, purple crap. (Purple is the migraine awareness color. Now you are aware.)
When I unrolled my jacket, I discovered it was a rather agreeable, though highly unaware, shade of blue. And, much to my relief, The Brain was embroidered on the front in petite proportions.
On the downside, the jacket was three sizes too large, and the fleece was so micro that the material was, ultimately, perforated.
After returning from hiding the coat in my car, I spotted my neurologist amidst a pond of strangers—maybe 60 people. She was standing near the empty Spirit Tent, but I decided to hang back during the opening remarks. I had never seen her out in the wild like this before, and wasn't sure what social norms governed the situation. For starters, her name...should I use her first name? Her last name? Maybe best to not use her name at all. And what should we talk about? My last interaction with her involved 35 Botox injections and that’s really hard to follow, socially speaking.
The microphone in the center of the promenade gave out a mind-numbing squeal as a man slipped on an extra t-shirt from the registration table and unfolded a prewritten speech. I moved further away from the pain-inducing loudspeaker, and wondered why no one else seemed triggered by the noise. Perhaps I was at the wrong fundraiser.
The man turned out to be the husband of the founder of Miles for Migraine, as the founder (and, hopefully, the better speech-giver of the two) had a migraine that morning. The microphone kept screeching while he droned and we stood around gaping like goldfish, making clouds with our breath in the wet morning air. As he gave out awards for largest team (the Stanford headache clinic), most money raised (a woman in a purple tutu), and most spirit (the same woman in a purple tutu), the sun rose above the trees and spilled onto the concrete where we stood. The light reflected off the back of my sunglasses, causing pain to pulse through my head.
The founder-husband then congratulated everyone on raising ten thousand dollars, despite that fact that all of the fundraising was done by seven people. The money was to be split three ways between Miles for Migraine, the Stanford headache clinic, and the UCSF headache clinic. That's about three thousand bucks for UCSF, assuming the split was even. I wondered if that was enough money to remove the punishing fluorescent lighting from their clinic’s waiting room.
The next speaker was the purple tutu woman, a self-proclaimed “professional patient.” (“Like you, right?” said my neurologist later. I resented the statement, primarily because it associated me with tutu woman.) She wore purple jewelry and purple sunglasses, and had a purple-tutu-wearing chihuahua in tow. She was one of only two people dressed in this manner—most everyone else wore regular workout clothes.
Tutu woman said something about how every step we walked today got us closer to a cure for chronic migraine disorder, almost as if the Miracle Cure was just over there, past that tree, and all we had to do was saunter up the sidewalk and pick it up off the ground.
The last to take the mic was a new doctor at the UCSF headache clinic.
"To all of you here who are representing pharmaceutical companies," she said toward the end of her speech, "we really, really, really appreciate the work you're doing! But if you could maybe...um...just consider taking a little teeny tiny bit of the money you make from migraine drug sales and...I don't know...fund some more migraine research, that could be a really, really, really good thing that might get us a little closer to finding a cure. And that is, of course, what we all want, right? Great! Thanks!”
I glanced at the Nurtec tent. The company reps standing beneath it were frozen in place, picture perfect smiles on their faces.
The walk began with a few short, scattered cheers that ended as soon as they began. A teenaged girl who looked as tired as I felt stood at the only turn in the route, pointing halfheartedly to the right.
Other than Cory and occasionally my neurologist (we mostly talked about pugs, in case you were wondering, and I managed to never need to use her name), no one walked to my right or to my left. The nearest people to me were at least twenty feet ahead or behind, and they showed no interest in either waiting up or catching up. I couldn't even spot the tutu woman.
I heard no cheers as we crossed beneath The Brain banner at the finish line. There were no massages, no yoga—just the sun, shining even brighter than before. The only source of respite was the Spirit Tent, but I didn’t want to risk looking too spirited.
I took a pass at the snack table, only to discover that I couldn’t eat anything on it. I had just started a rather strict migraine elimination diet, which I had found online after getting no direction from UCSF on how to identify migraine food triggers. Cory grabbed a chocolate chip granola bar—chocolate being the most common migraine trigger in existence—before we left.
I met no one else with chronic migraines that day, and made no new friends. When we got home, I put my finisher's medal (featuring The Brain) around my dog's neck, but he barely tolerated it long enough for me to snap a photo. So I threw it out.
I spent the rest of the day in bed, with a migraine.
Hello Natalie! My friebd sent me a link. I’d say it’s great to meet a fellow migraine warrior but it’s clearly not great you’ve been landed with this god awful disease! Think I’m just as close to writing my memoir as you are! Love the humour in your posts so I’ve subscribed to your blog and look forward to reading more of your content. Plus, it’d be great to connect with a fellow warrior 😘