Reckonings

For a minute and a half when I wake up in the morning, my chest feels normal and I can almost take a normal breath. The minute I sit up and try to take in anything resembling a deep breath, however, sharp pains in my chest cut it short, reminding me that plenty of gunk is still lodged firmly in my lungs. I’ve walked this path a few times before – – for some reason, despite having never smoked, my lungs are prone to pneumonia—but Friday was the first time I ever felt unnerved by the landscape.

Friday morning was spent mostly resting as any physical exertion left me wiped out and gulping at the air. I rested on the couch until it was time for a family walk around the house and, after our daily ZeroK, was wiped out for the rest of the afternoon. By the late afternoon, it was increasingly harder to breathe in, and I considered calling the doctor to see if there was anything I do should do in the face of worsening symptoms.

But I didn’t call him.

I took my pills and drank my tea and remembered my research of this illness. Dr. Google and actual doctors had told me that worsening symptoms might indicate a need for hospitalization, oxygen, or IV antibiotics.

Any other week, I would’ve called him, but this is not any other week.

This week I know that, nationwide, hospitals are struggling to find beds and masks and things to help people with a much more serious illness breathe. This week I know that calling for help might make me one more drain on a system that’s already overtaxed at the beginning of what appears will be a challenging spring. I don’t want to be in the healthcare system, but, even more I don’t want to be one more stressor on it.

So now it’s Saturday morning, and I’m still gulping as I write or talk, still trying to decide if I should call or wait until my next appointment on Monday to let the medication have more time to work.

Most of the time when I’m sick, I won’t call the doctor. I’m a doctor’s kid and grew up hearing admonitions to not worry about most aches and pains or even fevers. I know, however, that pneumonia can become quite serious, even in 2020.

What’s also serious, is the reckoning that the entire country is having with managing scarcity in an emergency and with our healthcare system. No one who has been in a grocery store in the last two weeks can have avoided the sight of empty shelves, sometimes rows of them. Panic has spurred some people to buy more toilet paper and pasta than could be consumed in a lifetime, leaving others to search for substitutes or simply go without.

Over the last few weeks, I’ve seen a number of people pointing out that a pandemic highlights the need for a strong system that is more equitable and accessible. Having lived in Germany and experienced their robust public healthcare system, I tend to agree. This week, however, I’m also reckoning with the role individual choices may have in making our current system in Bennington, Vermont less accessible to others simply by using increasingly scarce resources.

I don’t know that this is a bad conversation to have.

For years I have worked at a company with excellent health insurance and, especially where the kids were concerned, had no reservations about calling and getting that appointment or heading to the emergency room or urgent care. This week is not just about what we can afford for our family. It, like the choice to buy all the boxes of pasta or a just one or two for our family, is about what my choice may take from someone else. It’s about making sure that making that call is truly necessary.

For now, for better or worse, it’s keeping me from picking up phone.

Get Closer

Thing1 texted today that is spring break return this weekend will be the beginning of an extended stay as his schoolmoves to dance learning to respond to this virus that the world health organization now calls a pandemic. The University, like so many other organizations, is recommending “social distancing“. I often think we have too much social distancing in this country already.

While I texted back-and-forth with Thing1 about the logistics of getting his stuff home for an extended stay, I I clicked on Facebook a few times. A fellow artist in town announced that it was plein-air season and she was looking for people to go paint nature. I had too many meetings after work to go paint today, but as she posted another open invitation to any would be painters, I begin mentally assembling my travel kit and checking the weather for the next few days.

Painting outside, for me, means painting alone most the time, but is anything but lonely. Painting outside means communing with bugs and birds. it means meditating on setting Suns or the dozens of colors of green. It means becoming part of the scenery so that you can feel it and try to keep that feeling in your work. It is solitary, but it is never lonely.

A few years ago I used to run. My favorite places to run were our mountain roads, flanked by trees and teeming with life. Like Plein air painting, running was solitary but never lonely. It was feeling morning do on your skin mixing a sweat. It was hearing your feet setting on dirt and dead leaves crackling underneath. It was listening to birds and smaller creatures wrestling in the woods next to The road or path. It was The opposite of distancing. It was getting closer to nature end to life.

So even though I know temporary recommendations for social isolation are probably wise in light of the impact of Corona in other countries with excellent health care access. I do think there is a an antidote do the Loneliness (and fear) it may bring. The answer is to move closer, Not farther, to life. Reconnecting with the natural world seems like one of the better ways to do that.

Ladies (and Gentlemen) of the Club

We lost an hour of sleep on Saturday night. I couldn’t fall asleep until after midnight on Sunday night, and I had to be up by 4:30 on Monday to drive to a teachers’ workshop in the Northeast Kingdom of Vermont.

I was excited, but, for once, I wasn’t nervous.

When I worked in IT, I had a few professional development opportunities that sent me to fun locales, but the courses were usually more competitive than collaborative. There was always an unspoken challenge to prove you were the smartest person in the room (I am rarely smartest person in the room — Except when Jim Bob the orange tabby is here. Then I am the smartest person in the room).

Today was different. I’d done my homework. I had just finished a course at University of Wisconsin on today’s exact subject, and I knew it would be fun and useful.

I was bleary-eyed when the alarm went off, and I hit the snooze button once. Then I remembered what day it was and snapped right out of bed, hobbled in and out of the shower and donned my favorite scarf, a Maria Wulf creation that had been waiting for a perfect occasion on a perfect spring day. I was out the door and over the mountains before the sun was fully up.

When I got to the workshop/conference, the room was filled with a few dozen other Special Educators who hooking up their WiFi’s and getting acquainted. The news on the way up had told me I should be terrified to be in a crowd this size, but as we shared jokes about the rhymes we are all using this week to get our students to wash their hands better, I decided this day was worth any risk.

We talked about programs. We talked about helping kids with trauma and disability. We talked about our kids and our “kids,” and I suddenly got a feeling I’d never had at any professional conference before.

I sell art at art shows and craft fairs in the summer, but I always feel like an imposter, secretly certain that everyone can see how much better all the other artists are (I rarely worry much about writing since I need to do it badly enough that I don’t care if it’s bad or good). I was in IT in one role or another for over 20 years and, even when I knew I knew my job, I never felt like I really belonged.

Today was like being a ballplayer who had been moved up from the minor league to the “show.” Talking with people who care passionately about helping children and who were as nerdily excited as I was about the best techniques amplified the feeling.

It was a club, but, instead of competing with each other to be the smartest in the room, the members were sharing ideas about how we could help each other to our common goal.

I realized I felt like a real teacher today — like a professional. And, for the first time in any career, I felt like I belonged there.

And it’s a good club.

Better than Before

The girl had received bad news for the umpteenth time in the last few months. Her sobs of despair reverberated down the hall as she asked the powers that be, “What’s the point?”

“You’re the point!“ The cosmos answered in the form of a lanky young man charged with keeping order the school. “People like you are the point, “ he repeated. “Don’t you know that you all make us better?“

I smiled as I leaned my head towards the doorway to listen from my classroom. I was on standby for hugs and comfort, but my young coworker was already working his magic. And, as he elaborated on the ways our students make us better, I thought about how Thing1 and Thing2 have done that for me every day over the last 19 years.

Just before Thing1 was born, I still didn’t have a handle on my bipolar disorder. My depressive episodes sporadically threatened jobs, and manic phases spurred spending sprees and other self-destructive behavior.

But then Thing1 happened, and I knew I had to be better.

“Every day I go home after work and think about how to be better,“ my coworker said to the girl who was now listening quietly. “You do that for all of us.“

I thought of all the ways I have tried to be better for Thing1 and Thing2 over the years. I thought of the therapy I’ve sought and the examples I’ve tried to set.

Then I thought of all the ways our students spur me to be more organized, to learn more, to be better for them. It made me smile as I thought of how no matter what we will ever do for our own kids or for the ones we take care of during the day, we will always owe them far more for every day making us a little bit better than we were the day before.

What Kind of Mother

It’s two day before Thing1’s graduation. I’m on hold with the pharmacy for the third time this week trying to find out what’s happened with the most expensive of his five prescriptions. The insurance company won’t approve an increased dosage.

I’m scrolling through Facebook while I wait, stopping to like a friend’s post about a daughter’s scholarships or add a frowny-face to a post about a shelter dog on ‘death row’. I’m thinking about Plan B and C, including a three hour drive to Montreal to buy the temperature-controlled drug there. 

The hold music is still playing as I pause at a picture of a crying toddler. I click on it and open the article.

The boy in the article has been recently separated from his immigrant mother. The article doesn’t mention if they entered the US illegally or were seeking asylum, only that he is traumatized and that his mother is now incarcerated several states away. I break a strict self-imposed rule and scroll to the comments below the article. There is outrage at the child’s situation. There is also indifference and even smug vitriol cast at the mother and, by extension at the child on whom our government is visiting this psychological trauma, for his mother’s ‘sin’, a misdemeanor at worst, of crossing the border.

The pharmacy customer service rep returns and pulls me back to my current battle, which suddenly seems almost insignificant. I harden my heart and head and click the back button, for now forgetting the child and the hundreds like him.

“I’m sorry, Ma’am,” she says, her voice almost robotic. “The insurance company has denied the claim again.”

“Well can you at least send out the original prescription?” I ask. “He’s getting way behind now.”

“I’m sorry, Ma’am,” she says again. “The old one was canceled with the new one. We’ve sent it back to the hospital to reauthorize.” 

I want to ask her if she worries about job security if medical marijuana – a derivative of which we are on now wholly dependent to stop my firstborn’s internal bleeding – ever gains real traction. Instead I thank her for nothing, knowing I’m being rude for no good reason and with no expectation of an improved result. I call the hospital as soon as I hang up. 

The nurses – there’s a special place in heaven for them – are already faxing and calling and liasoning between the doctors and the ‘experts’ at the insurance company (there’s a special place for them too). The nurses inform me that the insurance company’s chief pharmacist denied the new dose again, and they are appealing the denial a second time.

By Friday afternoon, company is due to arrive for Thing1’s graduation. I finish most of the cleaning and sit down to call the hospital before the weekend starts. I sit on hold, thumbing through the Facebook feed on my phone again, smiling in spite of my frustration. Images of kids smiling at parties and beaming parents flood my feed. I know they have their worries too, but, for a moment, I feel like I’m looking through a window at another world.

Stories of children being separated from parents also appear. I don’t click on the articles; I’ve just heard their stories on the radio. A father, separated from his young son, has killed himself. Mothers in detention are being told they may never see their children again. Today, knowing I can do nothing, I choose to be blind.

The nurse picks up and tells me the insurance company is still stalling. My son is now over a week behind on the main medication he needs to know will work before he makes too many plans for fall. 

Saturday I tune out, focusing only on our small family celebration. At noon, our firstborn, my baby crosses the great divide from high school to a world that expects something of him. It is a huge step, and I constantly think how fortunate we are to have been able to travel toward and cross over that divide with him. Now, increasingly, he will travel independently. 

Once, I thought this part of the journey would be like ripping a band-aid off of an unshaved leg. 

Before Thing1 was born, I did not want kids. I was a wretched sinner. I had fornicated. I had lied — to people I hated, people I loved, to myself constantly. I had been guilty of almost every deadly sin. I was selfish. I was the worst candidate for a potential parent.

Somehow the miracle of my son happened. It would trite to say that he saved me, and he didn’t. He instead brought out a best part of me that I didn’t know existed so that I could be there to save him if the need ever arose.  

When he was first born, in my dreams, the need always arose. Shortly before I went back to work my dreams became colorful scenarios of someone pointing to my past sins. A judgmental family member or actual judge would tear him from my unfit arms, a rhythmic, colicky cry providing the nightmare’s soundtrack.

Initially, I thought these dreams were more selfishness — the fear of losing the one good thing I had ever been a part of making. Eventually, I began to see my anxieties about losing my child were really about the fear that my earlier sins, in the form of karma, delayed ‘justice’, or just incompetent mothering might threaten his foundation, that the sins of his mother would be visited on him.

Tuesday is Thing2’s last day of school. Our older son’s case is still under appeal. The three of us decide to go to lunch rather than wait by the phone. It’s a perfect Vermont summer day until we get back to the mailbox where we discover the first denial letters, signed by the insurance company’s chief pharmacy officer. 

I call the hospital for a status report. As I wait on hold, I google the pharmacy officer, a woman I discover. Knowing it’s psychotic, I get on Facebook, stalking the woman who’s denied my child’s prescription. I find her profile easily, discovering a professional portrait and a few snapshots of her with a little girl, maybe her daughter. 

I want to message her, to ask her what kind of mother can look at my seventeen-year-old’s charts and deny his chance at health. How can she be so blind to his condition?

The nurse returns and informs me that the doctors have conferred with the insurer for yet another review. We’ll know more Wednesday morning. 

Wednesday after lunch I start my daily calls. Our son is anxious to go back to work. Three weeks without his medication, however, are causing a backslide, despite the cannabis oil on which we’ve pinned too much hope.  

But I still have hope. I have a Plan B and C through Z if needed, and Thing1 knows it. That knowledge is letting both of us see his future through an optimistic lens. 

I keep Facebook open for a few more minutes after I hang up the phone. Graduation photos still appear in the feed. So do more articles about children being torn from their families in the name of national security. 

I click on a few, avoiding the comments, focusing on the families, on the children. I mull over a new Plan A, then Plan B to help safeguard those futures. They are not my children anymore than my son is the pharmacy officer’s child, but they are someone’s children. I still don’t know exactly how to help, anymore than I know if we’ll win our second appeal, but today, as I wait, I refuse to be blind.

Come Together


We weren’t late, but we weren’t early enough to Thing2’s band concert to have a good seat selection. The elementary school band is small, and I was surprised by the crowd.

The concert program revealed that the middle and high school bands would also be performing. It’s a small school system, so I was still surprised by the increasingly packed house. We’ve been to a lot of recitals and school concerts over the years, so I thought I knew what to expect.

I knew nothing.

The high school band played first. The elementary and middle schools bands sat in the first row of seats waiting their turn. Mr. Neeson, the band instructor, introduced the piece, a march that the high schoolers will also be performing at the Memorial Day parade in five days. He then called for and got a B-flat from the band before them their cue.

The first notes marched perfectly in unison, echoing through the tiny auditorium and daring the audience not to clap. The band, culled from all grades of the high school, handled changes in rhythm and key, and the Big Guy and I had to remind ourselves that we were listening to kids who weren’t old enough to vote carry on a fairly complex musical conversation.

They segued to a jazzier number, a ‘jam’, we were told, that was composed for the concert. The Big Guy and I gave each other the super-impressed look. Our jaws dropped as the students got up from their places and switched instruments.

“I don’t make each kid solo for a performance.” Mr Neeson turned around to talk to the parents for a moment. “I do require they all know how to improvise, to listen to and play with each other.” Then the music started again.

There are fewer than 400 kids in our entire school system and, from the outside, it may seem fairly homogenous. The reality is that our school sees multi-generation Vermonters and transplanted flat-landers, Trump fans, Bernie-or-busters, and everyone in between. There are kids who get new iPhones every year and kids who may get their only meal of the day at school.

There was no way to tell if the pianist was a liberal or the drummer is a libertarian. The only thing the audience knew for certain was that these kids had learned how to change their perspectives, see new points of view and express their individuality, creating rich, beautiful music instead of just noise.

More than once during the concert, the Big Guy and I told each other that Thing2 needs to be in band again. Thing2’s creative spark burns hot enough that he may very well propel himself into a creative life when he’s grown up — with or without a school program. The performances, however, melded into a beautiful example of how arts in the schools are about so much more than vocation or even avocation. We knew Thing2 loved band practice, but it was only when we saw him and his friends working together to make something wonderful, that we realized the music program was teaching him as much about life as it is theory and even creativity.

The high school band finished, and Thing2’s band took the stage. Mr. Neeson turned to the parents again.

“So how many of you are Beatles fans?” he asked. Every hand in the audience went up. He asked if we knew the chorus to the first song on the album Abbey Road and then enlisted us as backup singers.

The band had no singer, but as the first drum roll completed, I saw a few parents mouthing, “Here come old flat-top”. My eyes were damp as the next two lines reverberated, and by the time the band was playing “One thing I can tell you is you got to be free,” every parent in the room was ready to sing out,

“Come together, Right NOW!” And really mean it.

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