Stories We Inherit vs. Stories We Choose

As a child, I remember my mother asleep behind closed doors, the sole air conditioner in our New Jersey home whining away, the room dark except where the waning sun pried through the loose-weaved curtains.

Weakness. This meant I would have to make dinner for my father and four younger siblings again. It wasn’t until years later that I understood it was migraine attacks that drove her to bed.

I inherited this narrative — my mother unavailable, young Alice stepping up. Even though I, too, was suffering from this disease, unrecognized by anyone, including me. I must have made some internal vow: if I ever had children of my own, some headache would not get the best of me.

As I described in my recent interview with James Nave, migraine is a complex neurological disease. Headache pain is the most well-known of a series of disabling symptoms — and I had not given my mother proper credit for all she managed before she retreated to that darkened room. In the seventies, the few medications available were sedatives, opiates, or ergots that caused intense nausea. Not great options.

I made it through college on Advil, Excedrin, caffeine, and — when I decided that maybe less headache pain was worth probably more nausea — ergotamine. By the time I married, I was already worried about raising children while battling this disability for more than half my days. And none of the medications were safe during pregnancy.

The first trimester is notoriously fraught: nausea, vomiting, fatigue, food aversions, mood changes. There are less-talked-about symptoms too — heightened smell sensitivity, sensory overwhelm, brain fog. I was in familiar territory, except for the giant hormonal swings that aggravated my already sensitive migraine brain.

Just as I resigned myself to one child, the second trimester arrived. Stabilizing estrogen, better sleep, less nausea, improved energy. My attacks retreated to levels where they barely interfered with work, family, or leisure. I could enjoy my pregnancy — so much so that I joked with my husband that the solution to migraine is to stay pregnant.

Not quite. The third trimester brought poor sleep, the challenge of staying hydrated enough for both baby and migraine prevention, and the stress of impending parenthood — all reliable triggers.

Stress about becoming a parent is normal. When you have a debilitating disease, it compounds. When that disease strikes in unpredictable, often severe attacks, a different pattern of parenting takes shape. At least, this is my story.

I never knew how much time I had between attacks. What I do know: there’s a lead-up (prodrome) and a let-down (postdrome) that bookend the acute phase most people recognize as migraine. That reduced-functionality time has to be factored into the total picture. During those windows, I might not be able to drive carpool, get to the market, or make it to work. I might have to reschedule meetings or postpone anything requiring clear thinking — because of brain fog, lost words, difficulty reading, and fatigue. The memory lapses and mental disconnection are matched by sensitivity to light, sound, screens, smells, and sometimes motion. Some of us, like me, experience numbness and tingling, facial drooping, slurred speech. We watch ourselves swing from sad to irritable to anxious, disappearing to recover from crying spells whose origins we can’t explain.

It is all crazy-making. And we haven’t even gotten to the active headache yet.

The active attack is far more than throbbing, pulsing, or stabbing pain on one side of the head. Pain worsens with movement, light, sound, smell — even resting your head on a pillow. Any digestive symptoms from the prodrome redouble. Brain fog deepens. Thinking slows. All I can focus on is how much my head hurts, how sick I feel, how desperately I want to retreat to a dark room and sleep.

Migraine is a complex, debilitating neurological disease. It is not a headache.

Our two daughters are grown. Neither, so far, has shown signs of this disability. It cannot have been easy growing up with a migraine mother — though they were fortunate to have their father helping ensure this disease didn’t slow them from living their best lives. Still, migraine makes us unavailable to our families. Chronic migraine does this often enough that all feel the loss of time we can’t get back. When our girls were babies, I sometimes crawled on hands and knees to care for them. As they got older, they learned to rest quietly beside me. New medications came, and the attacks grew less frequent, less severe.

Choosing to start a family is brave. Choosing to start one when you’re already managing a demanding disease is braver. I have lived with migraine so long I don’t know a life without it. I refuse to let it define me. Migraine is my disease — not who I am.

Love, Alice

To learn more about migraine and hear my recent interview with James Nave on Twice 5 Miles Radio — about my forthcoming children’s book Mabel and Her Bright, Noisy, Prickly, Dizzy Migraine (due September 2026) — listen here: