The Edge of My Mind: Where I Stand 16 Years After Stroke


FOG SS_186908249It’s happening again. I’m at the edge of my mind, teetering toward the void of missing synapses, staring into the white fog of absence. Of absent memory, yes. But it’s more than that: it’s an absence of self. I feel my self slipping, like a hiker on a mud-slimed path. I balance on the far edge, lean back, beg my mind not to fall into the void—again.

In reality, I’m standing at the refrigerator door, looking at the object in my hand, an everyday object, something I want to cook. But I don’t know what it is. I think, trying to summon the information. Think, think, think. Nothing.

This is what stroke does. Still, after 16 years and a near-miraculous recovery.

After my stroke, I couldn’t remember my husband’s name or how to dial 911. I couldn’t control a fork to feed myself, couldn’t comb my hair, tie my shoes, or button a shirt. I couldn’t recite the alphabet or say what I wanted.

I was one of the lucky ones. Today I can do all of these. But I still can’t work in my profession of marketing and communications. (I don’t think fast enough, write fast enough, react fast enough, work fast enough.) I can’t calculate a tip in a restaurant or balance a checkbook. I often stutter and stumble when I talk, forget tasks, appointments, names, faces. Standing at the coffeepot, I can’t remember that my husband, thirty seconds ago, asked for just half a cup. And now, forgetting his coffee entirely, I carry the object in my hand into the den and ask him, “what is this?”

He looks up, startled, then answers: “asparagus.”

Yes, of course.

Still, some sixty or more percent of stroke survivors would trade places with me in a second.

Like me, they are unable to return to work. But unlike me, most of them can’t drive, type, articulate, live almost normally in the world. Many still—months and years after a stroke—can’t walk without assistance, can’t feed or dress themselves.

Yes, I am lucky and I know it. But still ….  My stroke was caused by an autoimmune clotting disorder called antiphospholipid syndrome (APS). This means that my own risk of a repeat stroke is very high, around 60-70%, experts say.  Each time I totter on the abyss I wonder, like feeling the beginning of a temblor in earthquake country: is this it? Is this another big one?

Don’t let stroke happen to you or someone you love.

Eighty percent of strokes can be prevented. May is Stroke Awareness Month. What better time to learn the risk factors for stroke and share them with someone you love?

Learn more about stroke: