M.I.A.

1109This blog is more of a reflection of me than I realized, or that you knew. Grab a Starbucks or a Big Gulp or whatever they serve wherever you’re reading this, and I’ll explain.

Let’s start with the easy visible part. The blog’s overall look is one of simplicity. Or at least as much simplicity as can be mustered when you’re sorting through all the sidebar options the good folks at WordPress make available. I chose that particular photo of myself because of the grey T-shirt, which lends to the grittiness of city life as seen through the—what are those, anyway? binoculars?—in the header’s image. And the image denotes taking a closer look at the human landscape, and it ties to my blog’s subtitle about observations.

Now for the invisible part.

On the “About Yours Truly” page I’ve listed random facts about myself. Absent from the list is that my 32-year-old daughter is disabled. She is unable to speak and has only gross motor movements as a result of an illness she suffered at age 14. Prior to that she was a straight-A high school freshman in perfect health.

That’s a really big deal, and a really big part of who I am, yet I intentionally omitted that fact. And here’s why:

Human beings are only, well, human, and when we’re at the movies or shopping at Anthropologie (did I mention she’s cognitively intact and has great taste?), I imagine people see The Girl in the Wheelchair and The Mom Pushing the Wheelchair. And therein lies the problem.

We are both, yet we are neither.

That seconds-long encounter fails to tell about us, about me training to qualify for the Boston Marathon or about Erin’s love of all things quirky and retro. That seconds-long encounter invites pity, not conversation.

A few years ago my husband urged me to write a memoir centered around Erin’s illness and the stone-in-a-pond ripples it has had on not just our family, but on people we’ve never met. Currently I’m writing—fingers crossed—the last draft and although in June my editor said he’d like this draft to be completed in three months, I’m about halfway done.

To chronicle something so personal yet so universally relevant is a huge task. And thus my absenteeism from this blog.

Recently, though, an essay of mine was published online at BioStories, so that was cool. It provides a glimpse into the memoir, if you’d like to read it.

This blog, like me—like all of us, probably—has a shiny side it shows the world and a personal side it grants entry to on a selective basis.

Welcome in, friend.

Chrysalis

Courtesy CC/Flickr

Courtesy CC/Flickr

There was a girl I knew once. She was fourteen years old last time we saw each other. Her quick smile revealed lavender and pink rubber bands on her braces, I remember, and you got the impression she was like every other bubbly blonde on every other high school campus.

But this bubbly blonde was different.

This bubbly blonde had a 4.5 International Baccalaureate GPA and dreams of joining the space program, a fact illustrated by the dog-eared NASA application packet on her bedroom desk.

I knew her well. I knew the raised scar on her wrist was from a curling iron burn, and that she used too much hairspray on her bangs. I knew she was a rotten basketball player, and that she loved Mississippi mud cake. I knew her well, though perhaps not as well as I thought.

The last time I saw her was seventeen years ago, in a hospital. She was a patient there, I her visitor. You needed that scarred wrist to identify her; a ventilator hid the lavender and pink rubber bands, and her bangs fell flat. State-of-the-art medical equipment crammed her private ICU room, and she appeared small and inconsequential in comparison. Doctors shook their heads—either in disbelief or nonbelief, I’m not sure which—when they heard about her intellect, her plans.

Months later she emerged from a medically-induced coma, and people waited—waited for her to talk, or at least acknowledge a visitor’s presence. She did neither.

Over time she learned to use hand controls on her power wheelchair and an iPad for communication, because the devastating illness that stole almost a year of her life also stole her ability to walk and talk.

What, her friends and family wondered, will become of her?

Over still more time she returned to high school and graduated with her original class, near the top of her class. Later she was honored as Free Wheelchair Mission’s Ambassador of the Year after delivering sermons on their behalf, lifting hundreds of individuals off the ground “through the gift of mobility,” as Free Wheelchair’s tagline says.

How, you may wonder, does a nonverbal person deliver a sermon, anyway? The simple answer is, by typing with one finger and having the message read aloud. The complex answer is, with a lot of grit and grace.

Because drooling is a problem for someone with little motor control. So is being front and center when, I imagine, you’d rather sit in the back of the room. I said I didn’t know her as well as I thought, because the girl I knew would never have opened herself to public scrutiny, to curious looks, to outright stares.

The bubbly blonde is gone. Maybe she didn’t disappear in that hospital; I don’t know—maybe she just grew up. It happens. Her evaporated NASA dreams, I’m sure, disappoint her. But her earthly contributions now, today, impact more lives than if she’d traveled in space.

So why does a fourteen-year-old girl—a girl I haven’t seen in seventeen years—continue to haunt me? Because that girl was my daughter.

But so is the young woman that girl has become.