I apologize for being MIA the last week and a half. Things have been happening.
Those of you who have been following me for a while know that I have chronic migraines. I developed migraines shortly after the first assault I survived at age 12, and they became chronic shortly after the last assault at 31. Seven years ago. I’ve often written that how we treat each other—specifically, the bodies of other people—directly impacts our health and well-being.
Yes, migraine is a genetic disorder resulting in a hypersensitivity in the brain. But environment can trigger the gene or, if it has already been triggered, worsen health outcomes, as the ACE study has demonstrated.
And although we are learning more about the mechanics of migraine, there is still no equipment anywhere in the world that can actually detect the disease. Thus, a migraine diagnosis is always a hypothesis, a best-guess, based exclusively on symptoms. There is a margin of error for all diagnoses, but for migraine, that margin contains multitudes.
* * *
For my friend Melanie, that margin contained brain cancer.
Melanie and I both grew up in the same Seattle suburb. We attended the same public schools. We shared the same name.
For both of us, we were just that weird other kid with the same name. We were both bullied by some of our peers. We were both lonely and scared. We both felt like outsiders.
But I didn’t know that until much, much later. At 14, she was just another kid I passed in the halls.
* * *
Around five years ago, we both developed chronic migraines. We were Facebook friends, sharing our journey online, and I began to chat with her. We commiserated. We encouraged. For the first time, we really got to know each other.
As soon as she became ill, her employer tried to fire her, which I informed her was illegal. What she had was a disability. By law, they had to accommodate her if it was at all possible. Turn down the lights. Let her work from home a few days a week. Allow her to wear earplugs and take more regular breaks. “Get a doctor’s note,” I advised her. “It’s the law. Ask them if they’ve ever heard of the ADA (Americans with Disabilities Act).”
Even the public library had tried their best to keep me at work. My manager had done everything she could to keep me on the payroll, even after we all knew I would never shelve books again.
Melanie had been struggling financially for a while. But healthcare costs, a lost job, and childcare left her flat-out broke. She was a single mom with two kids, and the strain on her was unbelievable. Yet she still cracked vulgar jokes online. She passed around those silly personality quizzes. She asked people to guess her favorite things (“Camo,” I said. “Yep,” she said). She reminded me of Diana, a woman who had helped me feel loved and safe and valued during a rough period of my own life. A woman who could look all kinds of hurt and loss in the face and remain wholly alive.
Melanie and I may have shared similar symptoms and limitations and even backgrounds. But our advantages in life had little in common.
I was in the middle of earning my master’s degree in education when my migraines went chronic, and I became housebound. I was without a paycheck for three months, but the financial aid as well as my husband’s job helped make ends meet. Then, I landed an online teaching job. There was no job security, no benefits, and horrid hours. But it paid $20 an hour, and I had 16 years of experience in education. The more education you have, and the more white-collar your resume is, the better you will fare if you wind up severely disabled and unable to so much as turn your head.
But Melanie had none of that. No advanced degrees. No white-collar resume. No financial aid package. No partner to help make ends meet. No familiarity with the ADA. She had been struggling before chronic illness. After? All she could do was fight. So she did.
Since I didn’t have to war with my employer or do battle with my insurance, I had the time to read journal articles on migraine. I got second and third opinions. On ObamaCare, I had no copays. I went to regular physical therapy appointments for the migraine-associated vertigo that sometimes made it impossible to see what was in front of my face.
Two years earlier, I had been writing, reading at open mics, submitting fiction to journals. I even got a piece published. Now, I set all that aside. My dream shifted from a writing career to keeping myself functional. I poured all my expertise and energy and training into that.
But for Melanie, the time she should’ve been able to spend researching treatments and providers was dedicated to arranging childcare, figuring out how to afford groceries, and trying to wrangle unemployment or disability checks out of a system that sets unrealistic thresholds for those of us with chronic but invisible illnesses. Her employer in the end did fire her, and penniless and sick, she had no recourse.
And all the while, surrounded by my GP, my neurologist, a physical therapist board-certified in neurology, and a massage therapist familiar with vertigo, my symptoms plateaued.
Melanie’s got worse.
By the time her providers finally sent her for an MRI, it was too late. In 2016, I graduated with my M.Ed., proudly dressed in cap and gown in my dimly lit living room.
My friend Melanie, my comrade in arms, the friend who stayed at the helm even as her ship was sinking, posting from her hospital bed, showing us all what this horrible health system really looks like, was already dead.
* * *
I’ve been thinking about Melanie more than usual lately. I’ve been thinking about how the system failed her. The system for diagnosing neurological disorders. The system for treating them. The lack of a safety net in the United States for those who survive accidents or disabling illness. We, as a society, did not adequately care for Melanie. We did not ensure that she had the opportunities she deserved—the opportunities she needed.
Which were only the same opportunities I had.
And the only reason I can see that she didn’t get those opportunities is that she was poor. She was from the lower classes. I was from the middle class. And between those two yawns a chasm that impacts longevity, health outcomes, and quality of care.
Melanie was poor, and she worked for an employer that disregarded her legal rights with impunity. She was trapped in a system that claims it has safeguards for disability but in reality puts already exhausted, half-functioning people through a process that can take a year or more. And a year or more was too long.
She was gone by then.
* * *
Over the last month and a half, my own symptoms have been shifting. Before migraines now, I collapse. I just fall down, like a seizure without the convulsions. I lose my vision. My consciousness ebbs. I can’t speak. My head feels like it’s on fire with a raging fever. Nausea overwhelms me. And I’m too weak to move.
Because I can speak again 30 to 60 minutes later, the ER doctor ruled out a stroke and sent me home with a handout. The handout specified things I should not do, until the cause is known: Don’t take baths alone. Don’t drive cars. Don’t operate heavy machinery.
And I thought about Melanie. I see how it could have happened now. A patient with a history of migraines walks in with an especially bad migraine. And an ER doctor on a busy day is eager to write it off as just another migraine.
“Just follow-up with your neurologist,” the ER doctor told me, and I wasn’t even sure if Melanie had had a neurologist.
* * *
My neurologist ordered an MRI. It is impossible to diagnose or identify migraines with an MRI. But it is possible to spot cancer. We are both fairly confident that the new symptoms indicate a shift towards migraine with brain stem aura. But we want to be sure.
Yesterday the tech handed me a pair of ear plugs and assured me that my wedding ring would be fine, but everything else had to go. She draped a warm blanket over me and braced my head and told me not to move, which left me certain that I would probably move.
Then, the table retracted into the machine, and there I was, lying inside a plastic tube while machinery buzzed and banged around me. The tech had put on some music for me, so I lay there with my eyes closed listening to Of Monsters and Men.
The truth may vary
This ship will carry
Our bodies safe to shore.
My wedding ring vibrated from the magnetism. The machine thudded, fighting to get pictures of tissue locked inside my skull. Yet I felt oddly peaceful. Twenty minutes, I lay there and thought how lucky I am. That Dr. Yang and I are doing an MRI when we think it’s probably nothing. And that even if it’s something, I have had time.
I have done things.
Almost 40, I have had so much more than Melanie ever did.