Lucky Girl

There are nights when I first lie down in bed that I wish it were morning already. That admission hints to a sort of optimism, doesn’t it? It makes me sound like I’m an early to bed, early to rise, tidy kitchen keeping, porch swing tea sipping optimist who can’t wait to take the next day’s tiger by the tail. Instead, it’s my biological warning system that tells me it’s going to be a long night of insomnia, of my feet being too hot and my arms too cold, of my mind already being smack-dab in the middle of tomorrow, of my feelings being too raw, all jacked up on the caffeine of worry. Worry about my son and whether he will sleep through the night, whether the long-dreaded, but no doubt inescapable seizure will strike, as he sleeps next to me. Or I am too conscious of my husband, sleeping or not sleeping in Noah’s bedroom, now my husband’s sick room that is starting to smell stale with lack of movement in the air, of his body. Nights like those, I can feel my heartbeat in my ears. (Zoloft has helped; I don’t have any problem admitting that, even aloud at the brunch table or during a meeting. And it’s doubtful anyone looks at me askance because it’s pretty well-known that if anyone needed some drugs to make it through the day, it’s me.)

Ridiculously enough, I consider myself a lucky girl. And that may be the true test of my inner optimist, but I’m not sure if that’s a result of my brain chemistry or my brain on chemistry. Still, I have few complaints despite my many challenges. If I skim through the pages of medical campaigns on gofundme.com, the community fundraising site, I know in my bones that it could be worse. That’s not just a cliché. There is one woman who has had the majority of all of her limbs removed due to a late-diagnosed case of Rocky Mountain Tick Fever. You can’t tell via the page her relatives created, and obviously I can’t ask her, but I assume she still wants to live, and that’s saying something.

Me, I’m astounded every day that I am someone with a story. Sure, everyone has a story. And I’ve always had a story to tell, about my own adoption, my surgeries, the deaths of my parents. But now I have the kind of story that can be donated to, and that meets the criteria for state assistance. (I mean, we have a freaking case worker! Don’t “other people” have case workers?) Our gofundme campaign earned $7500 in 5 days. The story is this: my husband has recently been diagnosed with leukemia. My son, 10 years old, has a seizure disorder and global developmental delays, and more relevant to anything, needs attention; he is not toilet trained, he would stop eating after 3 bites of breakfast, lunch or dinner, if we didn’t feed him, spooning food into his mouth, or hooking his G-tube up to a bag of non-food food. I joke that if there is something for him to run into, he’ll run into it.

Still he’s kind of a typical kid. Just a young one, for his age, cognitively a toddler, but with a will to do things he cannot do. He loves to swim, but can’t actually stay above water. He wants to climb to the highest point, but he doesn’t really know where his feet are when he places them on the rungs of the jungle gym. He loves the zoo, but his vision impairment prevents him from seeing the animals. He demands a lot of energy and patience. I joke (again with the jokes) that he is 1.5 children, so it’s a challenge to be outmanned by him when you are caring for him alone.

But here’s the deal: I’m not sure what I expected. What does anyone expect from life, when you have no idea who you will be as you age, or what will happen on the way? At some point you learn, if you don’t look too carefully at your sorrows, if you glaze your eyes over just a bit when giving them a stare-down, the edges are dulled and you can run your mind along them, like your finger on the blade of a knife, without feeling the cut.

Being Seen

A Louis Vuitton bag. An iPhone holder in the shape of brass knuckles. Her iPad cover is pink and tan. Stiff beige work boots, the kind that were in style in the 90’s. Her shirt cut off short, the unhemmed edge curling up, a picture of Tupac entreating us to “Trust Nobody” above her flat belly. A black trucker hat pulled low over her curling extensions, white earphone cords dripping down. She has a beautiful smile as she listens in silent appreciation to what streams—maybe YouTube—on her phone. I’m surprised her fingernails are cut short and may or may not have a light pink glaze over them. I expect her to sport intricate designs on the ends of her fingers, maybe leopard print to match the face on her watch.

There is a man in a Packer jersey and long tan pants over Adidas sneakers. It is 90 degrees, humid, and July. He must have gotten dressed in air conditioning. Sunglasses like those worn by Tom Cruise in Risky Business hang from his hand as he waits for his beverage at the coffee bar. There is a self-seriousness to his face that bespeaks business, maybe investments, but also there is a lingering frat-boy insouciance that keeps the other people in the queue from getting too close to him. When he leaves he weaves his way through the people coming in rather than going around them.

My accessories consist of a pair of crutches and a bead of sweat racing from my forehead to my cheek. The woman at the table next to me, a stack of notecards and an egg biscuit in front of her, offers to help me settle in, but only after I’ve settled in to my seat and I can decline her offer graciously. A cute hipster girl brings me my breakfast, and the only woman working at the café who does not wear her youth culture on her sleeve and could rightly be described as a ‘plain Jane’ brings me my latte. I get the hefty black boot that guards my broken foot from further damage settled on the chair across from me. From this vantage point, I can see the entire room.

I marvel at the slim 50-something woman with the tightly curling hair listen intently, with a kind of melting sincerity, to the man in the yellow shirt and khaki pants and lengthy grey-brown hair who sits next to her, his legs crossed at the knee, youthful brown tennis shoe on his dangling foot. A man in dark-framed glasses, grey pants rolled up just below his knees like how my husband used to wear his when we first started dating, catches me looking at him. I turn away rather than smile like I see people do in movies. Why do we feel so guilty looking at one another?

In 1st grade, I wore a full cast on my left leg and walked with crutches for six weeks following knee surgery. In 3rd grade, I wore a similar cast on the same leg after breaking a bone in my lower leg. Soon after, I wore a body cast from the tip of my left toes to around my rib cage, after another surgery on my upper leg and hip, replete with rods and pins to hold the bone together. There were other surgeries as I grew, and I became adept at using those same wooden crutches each time, racing other kids with two functioning legs down the hallways of our school.

But I never got used to the stares, the curiosity I provoked in people as I moved awkwardly through the mall or at a sporting event. I recoiled when that curiosity compelled strangers to ask me what had happened. I found their blatant interest in my misery self-serving and not at all innocent. I preferred not to be noticed. When I arrived at my college campus for the first time, again on crutches and struggling to participate in the freshman orientation activities, I was conflicted with my need to ask for help from these strangers and my desire to go unnoticed. I preferred to be lonely rather than be perceived as needy.

My son, who is none, now draws those same stares. Small children corkscrew themselves to watch as my son walks awkwardly past them, his hand in mine, his staggering gait mimics that of an actor miming drunkenness. Adults sometimes stare too, but are better at hiding it. They glance over at us, once, twice, three times. You can see the wheels turning: isn’t that child too big for a stroller? Isn’t that stroller bigger than most? Is there something about the drop in his chin, his unfocused eyes, the bend in his wrists? And once they realize their suspicions are true, they look away, self-conscious. Sometimes they smile. Sometimes that smile is warm.

In this cafe, there is the constant sound of coffee roasters spinning the beans, like sitting next to a waterfall and its constant rushing. The sound drowns out the specifics of any conversation, but the collection of voices blends into a drone in my ears. There is a surprising sense of privacy to this coffee shop—each table or booth an island from the rest–despite the activity and the nearly full number of chairs. As I maneuver my way through the tables to get a glass of water, my metal crutches click and creak, lead the way, but to my surprise hardly anyone notices. One man slides his chair closer to his table to give me more room. A woman at the condiment counter asks, “Don’t you just love your boot? I love mine. I still have it for any time I turn my ankle.” I want to say no, but I just smile, lips closed. I’ve never been good with hollow agreement. When I leave, backpack with laptop slung over my back, a man vacates his spot in the order line to hold the door for me as I leave, asks if I can manage. I say I can, this time with honest gratitude because the hot sun of a summer day awaits me and I am already tired at ten in the morning.

It has been over twenty years since I was last on crutches. It’s harder now. I’m heavier. I’m older. After five days, the palms of my hands hurt so much I dread needing to move anywhere. I expect to have highly defined deltoids by the end of these six weeks. Now, I find the “What happened?” not only tolerable but kind. My boot a badge of courage that people can plainly see, something that labels me “soldier” rather than “victim.” I have to work harder to do the kinds of ordinary things that the people around me can do without effort or thought. I sense a kind of respect emanating from them. Why could I not sense that same admiration when I was a child? Why did I feel apologetic and ‘other’ rather than proud and singular?

I might never know the answer to that most important question of my childhood: why was I not able to accept my individuality as a person as not only inevitable, but to be lauded? Why did I hide rather than shine? How is it that I remained unaware of my near-celebrity; I, like the biggest movie stars, couldn’t hide from being seen? Now, I suppose being hobbled and on crutches at forty offers me a chance to re-label myself, a new measuring stick with which to mark my growth. Instead of hiding, I free myself by being seen. Perhaps I can teach my son to feel included by the stares of strangers, rather than excluded? The idiosyncrasies of character, worn on the outside for all to see—from brass knuckle phone cases to achingly hip sunglasses to a big ugly supportive boot to an obvious, intractable disability— are what imprints our existence upon the world.