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Thursday, October 19, 2017

Ella Loves Kindergarten

Ella has no talent for evasion. She reveals her emotions without the slightest artifice. Her happiness is so obvious, so transparent. She smiles, laughs, and skips--actually skips--across the room. When she is angry, the emotion is no less obvious, and the source is unmistakable. Often, I catch her glaring, with hooded eyes, at Owen. When angry with her parents, she retreats to the corner and pouts, her anger determining our mood like a bad weather pattern.

Since starting Kindergarten, in September, she has revealed new emotions, most notably a strong sense of self-esteem, obvious in her posture, how she straightens her back and tilts her chin upward when speaking about her lessons: counting and writing and coloring in the lines--oh, the profound importance of coloring in the lines!

I love it. I love everything about her school. I love the principal, Mr. Mac, who visited our house in August to read Ella a story. I love her classroom, with its primary colors, the gleaming metal pegs where she hangs her backpack, the low chairs, the smell of crayons and pencil shavings and books. I love picking her up after school, at late care, when we walk the corridors, poking our heads into classrooms, or the library, or the gym, which smells of decades of sweat. (The school was built in 1969, the year my brother Scott was born).

Ella loves it, too, though she spent the entire summer dreading it. One night in late July, before Mr. Mac had come over and after we had watched Spider-Man 3, she woke around 5:00 AM and padded into our room, crying.

"Mommy," she said, half asleep, "I dreamt of Venom. It was almost as scary as the principal coming to our house!"
But he came. And she survived. And now whenever Mr. Mac sees her, he shouts out, "Ella!"

Recently, when I picked her up on a Friday, after Mr. Mac had shouted across a hallway crowded with kids, "Have a good weekend, Ella," I stopped in my tracks to stare at Ella. She was shaking her head and smiling as she tightened her backpack straps to her chest.

My God, I thought. She is so proud.

I loved it. I loved her. It felt like the best moment of my life.

She looked up at me. "Daddy," she said. "STOP."

She knew what I was thinking--for I have no talent for evasion. In the hallway, surrounded by children, she was embarrassed by her father. And I loved that, too.


Originally posted on Facebook.

Monday, July 3, 2017

Thirteen-years Married

Thirteen-years-ago I married my high school sweetheart. Unreliable online data suggests high school sweethearts account for only 2% of all marriages. And less than 2% of people who marry their high school sweetheart earn a college degree.

That last statistic is significant (to me) for a simple reason: After I graduated high school (a year before Karen), we survived a five-year long-distance relationship. I lived in Bloomsburg. Karen lived in D.C. In a box in our bedroom closet, we keep a testament to this time: hundreds of hand-written letters.

The most difficult period, by far, was our first separation, during the summer of 1995, when Karen traveled to Mexico for six weeks and I entered Bloomsburg's "summer freshman" program. I dormed with Anthony, a football player, a truly unintelligent person, who had yet to discover the bacchanalian freedom most summer freshmen had abused for entire high school careers. Making up for lost time, he boozed nightly and rarely slept. Sleepless and depressed, I abused Tylenol P.M. I drank too much bad beer. I found sleep, though not of the restorative sort. Even then, no torment equaled my summer-long paroxysm of lovesickness.

Jerry Garcia died that summer: August 9. That night, when Jerry’s noodling droned in countless iterations from a hundred dorm room windows, the sound was indistinguishable from the mountain-rich blur of bugs, yet I recall walking across campus, from Shroomin's room to my own, excited for my appointed call to Karen’s host family’s place, and catching a snippet of “Box of Rain.”

Oh, how I hated the Grateful Dead. My feeling was: Good, stay dead. But Karen loved "Box of Rain."

Hearing the snippet was enough: I burst into tears. On the phone, minutes later, we cried together, not for Jerry, but for ourselves, for the lonesomeness of our long-distance call—one of many despairing, lovesick calls which reduced both of us, on any number of humid summer nights, to sobbing.

And that was just the first summer. Anyways: Here's to high school sweethearts! This image was taken last week in New Orleans, at the back of a streetcar. We were on our way to the Garden District to get drunk and eat tacos.


Originally posted on Facebook.

Wednesday, May 3, 2017

On the GOP's New "Healthcare" Plan

Of my various pre-existing conditions, type-1 diabetes is the most cost-intensive. In the GOP's new plan, my state can either continue the Obama-era protections for pre-existing conditions or place me (and others like me) into a "high-risk pool," as a way to separate me from healthy people, who can then enjoy lower premiums.

Here's what Andrew Gurman, the president of the American Medical Association, has to say about high-risk pools:

"Prior to the enactment of the Affordable Care Act, 35 states operated high-risk pools, and they were not a panacea for Americans with pre-existing medical conditions. The history of high-risk pools demonstrates that Americans with pre-existing conditions will be stuck in second-class health care coverage -- if they are able to obtain coverage at all."

Without coverage, I will pay out-of-pocket at least $500 per month in insulin and testing supplies alone. With insurance, under the new plan, my costs may be--what?

Trump said on Monday: "It will be every bit as good on pre-existing conditions as Obamacare."

Yet nearly every publication I have read, with the exception of The Wall Street Journal, disputes this fact. The Journal's opinion, contrary to the president of the American Medical Association, is that "high-risk pools are a fairer and more equitable solution."

Yet The Journal's editorial misstates the amount of money available to states for these pools as a "$100 billion." The real number is $8 billion, which is woefully inadequate according to nearly every healthcare expert. (Please correct me if I'm misreading this).

Implicit (to me) in so much of the debate about healthcare is that there must be "winners and losers," as if the health of other human beings is a game.

Also implicit is the notion that sick people do not "deserve" to pay the same premiums as healthy people--after all, why are we sick? I've actually seen this argument made against people with diabetes. What can I say? If you know me, you know I fight every single day to be healthy. And yet, I have several chronic illnesses--so, inevitably, on any given day, I lose my fight. That is the nature of chronic illness.

So what do I deserve as human being who requires care? Do I deserve the label (and attendant costs) of "high risk"? Or do I deserve to pay the same premium as my "healthy" friends?

Health care is not political. We all deserve health care. When we create distinctions between the sick and the healthy, we fail to recognize each other's humanity.

And just to say: I am not posting this picture of my infant son and me to be gratuitous or attract undue attention to my post. The point of the picture, to me, is simple: Healthcare is about caring for those who need it. And some require more care than others.


Originally posted on Facebook.

Monday, January 23, 2017

Invisible Illness

I talk and write about illness often, so I'm hesitant to say--with the lingo--that I have an "invisible" illness. And frankly, I'm not one to hide my illness. I lance my finger in front of friends and colleagues. I jab a needle into my gut wherever: a restaurant, a crowded street.

What I do hide is my day-to-day symptoms. At any hour, on any day, I might feel vertigo, bewildering fatigue, pain. I often have a headache. I rarely feel balanced. My symptoms stand opposed to the person I want to be, so I try to appear healthy, for hours each day, until I return home, when Karen, just home herself after a long day, suffers the burden of my efforts. I can be silent, mean. She's receptive, but not sympathetic. After all, she too suffers an "invisible" illness.

So we have an implicit understanding. We move on, ignoring our symptoms for days, weeks, months. We attend all the events. We host countless dinners. We welcome the world to our home. We do this, we tell ourselves, for life, for our children. We go on and on—until life makes us stop.

Two weeks ago, I woke with a pain in my chest. I thought of Uncle Dean, whose own heart troubles began in a similar way: one morning, a pain in the chest. The feeling, and the thought, were impossible to ignore. I could not take a deep breath. I tried, but some mechanism blocked me.

Already anxious, it was impossible for me to respond reasonably. I plunged into the woes: frustration, sadness, worry. For a few hours on a Tuesday, I was dying. I now admit I was suffering an “anxiety attack,” as my doctor called it—a diagnosis I had, at first, denied. I was certain I was experiencing Dean’s illness. Over fifteen years, I had learned to manage my chronic illnesses, yet these symptoms felt acute, and somehow the opposite of “invisible.” As I went about my life, I thought everyone could see—or worse, feel—my anxiety.

Oh, I thought, this is not the person I want to be. But since everyone could see, I thought, I might as well speak. So I started talking to people—at the grocery store; at the Y. One morning, some self-interested impulse made me confess my anxiety on Twitter. Friends responded with encouraging words. One friend wrote in a message: “Seth, I have suffered anxiety for years. My suggestion: find a picture of Owen and Ella. Look at it until the darkness passes.” And so I did exactly that. Whenever I felt anxious, I looked at this picture of Owen and Ella.

What I learned from talking and sharing, I think, is that many people suffer from “invisible” woes—and many, like me, do not share for fear of seeming vulnerable or self-interested. Oh, but how sharing healed! Even the simplest of words helped me feel less desolate, less afraid. Since then, the pain has subsided, my breathing has calmed. The darkness has passed. Be well, friends. If you feel a need to share, I'm here with open ears.


Originally posted on Facebook