A hose outside a house in a suburban backyard
My brother has always had a knack for crafting memorable metaphors from complex ideas. He tells me this one about my mother’s Adult-onset Leukodystrophy—the disease then in its earliest, most unnoticeable stage—when I am young, maybe eight, and I remember it forever.
The myelin sheath is a greatly extended and modified plasma membrane wrapped around the nerve axon in a spiral fashion. Picture it as a hose.
A hose outside a house in a suburban backyard. Imagine the hose is green; the yard, too. At the crank of a wrist, fresh, clean water sprints up from the property’s subsystem, glides through the casing, and pours itself into place effortlessly. Prior to appearing at the spout, water is an unthought. The ground drinks up. Grass and flowers flourish.
But eventually, the hose begins to peel; its vibrant green wears. Yes, all hoses deteriorate over time, but this one specifically has a certain defect that makes it deteriorate faster.
Are you following?
Deterioration. A hundred holes leak fresh, clean water. There is nothing wrong with the water, it just doesn’t get to the spout and therefore the grass.
. . . so the myelin sheath is like the hose, right, and Mom’s neurotransmitters—or the messages from her brain—are like the water that’s supposed to flow through the hose and arrive at the grass, except it keeps leaking out. Does that make sense?
I remember this. I repeat it and relay it to a select few throughout my childhood: a best friend, a teammate, and once a grade-school teacher I shouldn’t have told. It spilled out how lies do, nervous and quick.
Signed proof by a parent that I had done my homework—that was the hurdle I was trying to clear when my tongue tripped me up and I went down a precocious-sounding rabbit hole on the intricacies of the Leukodystrophy and the function of the myelin sheath. I was in fifth grade and had forged my mom’s signature, something I’d done tens of times before and never felt bad about. It was a ridiculous requirement. Of course I had done my homework, it was right there in my handwriting. Why all the extra red tape?
The overbearing administrative aspects of school irritated me and my mom both. When she first learned of the new nightly oath demanded from her, she flippantly filled four weeks of pages at once with her initials. My teacher, Mr. Smith, took notice of this when he looked through my assignment book the next day and sent a snarky note home explaining to her how that wasn’t the point of the exercise and if she could please just cooperate and sign nightly, that’d be great. Instead, my Mom, a teacher herself, and I, a rambunctious but nonetheless A-student, entered into a kind of low-key rebellion together: she taught me to forge her signature.
With practice, she coached me on the rounded curve of a capital n and taught me how to loop a lowercase y. She handed me an interest in untangling letters and an attraction for working them back together. Excavated from this experience were my first small associations of art with pen and of pen with protest. Why sign on the dotted line when you can sign through it? By now, I have written my mother’s name a thousand times; it is an act of love. Still, I practice it.
For months, the forging was a non-issue until suddenly it was. Mr. Smith was intimidating and I was ten. His voice boomed when he yelled, and I knew he just didn’t like me. I had a propensity for talking without raising my hand, shirking the rules, and just kind of being a high maintenance student in general. He must have been waiting for a reason to let me have it. So, one day in early spring when I routinely handed in my homework and showed him my assignment book that held an unusually messy—and of course forged—signature (I had fallen into the sloppy trap of comfort), he challenged its validity. I froze.
He asked if it was my mom’s signature: Yes that’s it wasn’t enough to appease him. Then he asked again. And again, giving me that look that told me he just knew, and I, feeling as if I had nowhere else to go, mumbled down a path about my mom having Leukodystrophy, which made it so her handwriting was sometimes poor. At that, his voice and eyebrows rose and he said Leuko-what? There was no turning back. I picked up speed: Yeah it’s because of neurotransmitters and this thing the myelin sheath . . . We all have it, but hers is deteriorating . . . So it’s like a hose, right . . .
I went through the whole metaphor.
He was disarmed out of confusion and let the challenge go, but I held onto it for weeks, angry at myself in cycles for letting out secrets I knew not to under the slightest, most selfish pressure; for betraying my family’s trust. See, my mom worked as a teacher in the same school district, and while her condition was only just beginning to show in brief, elusive bouts, we were explicitly told to never, ever discuss it with anyone.
For weeks I waited nervously for the moment I’d be found out. I imagined my mom waiting for me when I arrived home, arms folded in disappointment, or maybe it would come through in the form of a call during dinnertime from Mr. Smith or an administrator to my father: Mr. Chen? Yes, we’re calling about Mrs. Chen’s Leukodystrophy. We know all about it.
And then what exactly would happen? I didn’t know for sure, I just worried about it happening at all. Later, I learned that my parents were concerned my mom wouldn’t get tenured if the district knew she had a neurodegenerative disease. We were all on her insurance.
The anxieties of secrecy root inward early and become near-impossible to purge. In fifth grade, I not only knew what the myelin sheath was, but I had been disappointed with myself for talking about it with the wrong person and worried about who might find out that I spilled the beans. Some grade-school gossip that was.
Weeks after the event, I would finally find relief. I arrived home on a Friday, hands full of dandelions.
Put your weeds down, will ya? Hurry up and come inside. It was my brother, waiting for me on the front steps. I couldn’t understand how a flower so perfectly bright could count as a weed, but before I could defend the wrongfully categorized, he ushered me inside quick. Mom and Dad have big news!
Inside, the sun-filled kitchen felt as light as the outdoors actually was. There was a pitcher of lemonade on the table and an already-dug-into plate of cheese and crackers. The whole family sat down in our unofficial spots on the big white cornered couch in the living room where we always had important conversations. Usually it was where I was spoken to when in trouble. In that moment, despite the mounting anxiety of Mr. Smith and the myelin sheath, I knew I wasn’t. Finally, my dad spoke: he was quitting his job up in New York and taking a shot at starting his own business around town. This was huge news.
I now realize it was less about business, and more about being home for Mom—for us—as the Leukodystrophy progressed, but at the time, we were all elated nonetheless. To be home together as a family.
Oftentimes, the only way to rid oneself of a big anxiety is to occupy oneself with a bigger excitement. From that moment, I never worried about Mr. Smith again.
Life felt new. I forgot my mishaps and forgave myself. Summer arrived. All July and August that year, in the evenings, Mom and Dad drank wine on the deck—or in the garage if there was a thunderstorm on. Jesse and I indulged in endless cheese-and-cracker plates and got along. On the best days, we’d connect the garden hose to the sprinkler and run through over and over again, not once thinking about a disease of any kind. Sometimes, we’d chalk the entire driveway. Sunflowers, hopscotch, the usual. Once, I covered the entire front steps with my mother’s name, a hundred perfect signatures. When my masterpiece was finally complete, I called her to come see. Look, Mom, I can really write your name perfectly now.
It’s great, sweetheart, she replied, now let me see you write yours.