To DJT: On International Women’s Day

red-01Dear Mr. President,

Today is International Women’s Day, and I am staying home from work. Not because I took the day off–I don’t really have that luxury. I just got the day off because my employers gave it to me. But I figured I could take the morning and tell you a little about my work, since you Tweet that you “respect” it so much.

For money, I am a pediatric nurse. The children I care for are called “medically fragile”. These are the kids who can’t move anything except their eyes, and maybe one thumb on a good day. These kids have feeding tubes, and wheelchairs, and machines that breathe for them. Their equipment is insanely expensive. Without adequate government-provided healthcare, no family can afford what these kids need. Without adequately funded scientific research, no one can prevent or cure the diseases these children have. And without access to women’s healthcare programs, genetic counseling, and birth control, parents who carry the genes that cause such genetic disorders run the risk of having more than one child with a debilitating disease.

I go to school with these children. They need a special school filled with adaptive technology. Private schools are not required to offer the sort of interventions these children need. Betsy DeVos clearly has a limited understanding of the Individuals with Disabilities Education Act, and her current “confusion”, unless corrected, will strand the kids I care for.

Just as an aside: most of the nurses who do this difficult job are immigrants from the Philippines, Haiti, Jamaica and China. You see, white American-born nurses are the minority in this line of work. Not because immigrants take the jobs away from American-born—but because the American-born don’t want the job. Excuses I’ve heard: “heartbreaking”, “too hard” (the kids and their equipment is heavy—and we carry it from class to class), and “boring”.

Interestingly, though I earn more than FOUR TIMES THE MINIMUM WAGE, my salary cannot support our family. Not because we spend it on country clubs and golf outings. Nope. Our big expenditure is childcare, especially in the summer, when I work and the kids don’t have school. Thank goodness, during the school year, my kids go to a FREE PUBLIC SCHOOL.

Oh, and BTW, my healthcare job doesn’t come with health insurance.

Nursing’s just what I do full time for money. For no pay I’ve written a successful $60,000 grant to build a playground in my underserved neighborhood. The other mothers and I schooled ourselves in the minutiae of playground design, raised even more money, and got a state of the art playground built in less than a year. The kind of thing you wish your tax dollars took care of, but just don’t for some reason.

And when I get home, I care for my two children, cook, clean, garden, chauffeur….you know, that stuff you and Melania hire people to do for you.

Lately, I’ve had another part time job. I have been spending hours in the evening keeping track of and resisting dangerous legislation that threatens my children. Cuts to education funding, inappropriate cabinet appointees, rollbacks on gun safety, and the gutting of environmental protections. You see, as a mom, I don’t want my kids shot by a mentally ill person, poisoned by lead in their drinking water, or suffering a mega-storm, wildfire, or drought brought on by global climate change. I’d like them to grow up in a world with wilderness, and clean air, animals and polar ice caps. Call me crazy.

Well, that’s just a few reasons why my work is important. Now show me you respect it. Protect my children’s free, quality public education. Protect the environment so my kids and grandkids have a decent world to live in. Protect my children’s health.

I dare you.

 

 

 

 

Why I Don’t Always Stand Up to Racism

So I love my job taking care of medically fragile children in schools. I love the hours, the vacations, the fact that I get the same days off as my own kids, and I love the children I take care of. I love the problem solving and the physicality and independence. I feel like I’m doing something positive and worthwhile.

But I have one complaint: one of the schools in which I work is located in a town that has been tried and found guilty of systematically denying housing to people of color.

Needless to say, this town went heavily for the Prez-elect.

In the classroom where I work, most of the kids are being raised in pro-Trump households. These kids are given to saying things like, (and I heard this just last week): “Over the Christmas break I played a blah, blah video game and my team’s name was Trump’s Wall. We were awesome.”

At this point, one aide who knows my family whispered to me, “Did I hear that right?” and I said, “Yes you did.”

But other than that, I kept my mouth shut.

I did not take this child aside and tell him that my own son was taunted at a recent wrestling match with “Build the wall” chants. I did not explain that Trump’s Wall is not something everyone feels equally enthused about. That “the wall” is used to tease brown kids regardless of their citizenship status, and therefore has become a racist meme.

I didn’t speak up because I know I am behind enemy lines, and I need this job, and I like this job and I want to keep this job.

And that, rich white folks, is the reason poorer people of racial and ethnic minorities don’t always correct you when you say something offensive. It’s not because what you said is okay, or because they were okay with it. It’s because they don’t live in the same bubble of safety. So the next time you hear someone getting away with something offensive, or the next time you feel you can’t possibly be racist because no one has ever called you on it, not even your co-workers of color, think again. Maybe no one has called you on it because, like me, they value their paycheck.

And guys, it goes the same for women. Just because they didn’t call you out on your comment, it doesn’t mean they were good with it. It just means they need the job. So stop using other peoples’ silence as an excuse for continued bad behavior.

You all know the difference between right and wrong. Stop pretending you don’t.

 

 

 

 

 

Twelve-Stepping the Election

 

 

awpfh8p

It’s been a few days since the election, and I’ve had a little time to crawl into my cave and lick my wounds. I’ve read a few blogs about how we will survive, and a few about how bad it really is.

Personally, it is likely that my family and I will be largely okay. We are protected by the facts that we live in one of the bluest states (though not the bluest area), surrounded by diversity (so we have protective camouflage). My husband and I are both employed in jobs that will not disappear no matter what trade deals do or do not happen, and my children will get a decent education no matter what happens because our state has its own very stringent standards.

We have the privileges of money in the bank, home ownership, education, employment, good health, and geography. Many others don’t. The mother of one of my clients (for those of you who don’t know–I am a private nurse for medically fragile children) was gutted. Devastated. I worked that case the morning after and the first thing she said was, “I don’t know what will happen with our insurance.”

Because for all the people who thought the Affordable Care Act was bad, there are many who thought it was pretty good. Not perfect, but workable, fixable. See, if you don’t have a chronic illness, or loved one with an expensive medical situation, you might not realize how important it was that lifetime caps were lifted under the ACA. In the past, before “Obamacare”, an insurance company could cancel your policy after you’d spent a million dollars. Well, it’s pretty easy to reach a million in the first few years of life if you’re one of the children I take care of. So to all you people who want to repeal and replace, what’s your plan for these kids?

I also worry deeply about the environment. We were making such strides with the Paris Accord, stopping Keystone XL, and preserving wild spaces. Now, we have a climate change denier coming in who is likely appointing a climate change denier to the EPA. So we don’t despair, our family spent yesterday donating money to causes we care about. Another privilege of ours is that we can do this. We can decide to charge a donation to our not-maxed-out credit card. It’s a little balm to the burn. Unfortunately, it will likely be the most vulnerable of us that are affected by environmental insults. Many of those red staters  who voted the man in will be flooded, drought stricken, or sickened by weakening of EPA air quality standards.

It’s hard to watch people make choices that are not in their own self-interest. But I see that all the time as a nurse. When I worked in the hospitals, I constantly detoxed addicts and alcoholics. They could be yellow and swollen with failing livers, and we’d work to bring them back from death, send them off to rehab, only to get them back a month or two later and detox them again.

But as they say, you can’t deny someone “the dignity of their own bottom”. You have to let them hit it hard enough that the lesson is learned. Hopefully you can keep them alive long enough that they get to learn the lesson. Sometimes they don’t.

It feels like America is hitting some kind of ugly, hate-filled, fear-inspired bottom. If you ever have had a loved one  destroy their life with addiction, you might recognize this awful feeling. It’s sickening to stand by and let it happen, but some Americans may have to bottom out before they realize it’s time change. Meanwhile, I have to accept where I’m powerless.

I am powerless to change the choices of others. Whatever their reasons. Regardless of how I feel about it.

And even though I can clearly see the train wreck that’s about to happen, I can’t step in front of the train and stop it. I have to stand to the side, gathering supplies, readying myself to pick up the broken pieces. Save who and what I can, starting with myself, and then spreading outward to those who want my help.

Helping and changing what I can is the way I will recover from this sickening situation.

So I’ve had to twelve-step the election. I’m using the wisdom of the recovery movement to get through. Keep it in the day, one day at a time. Don’t quit before the miracle. Have the courage to change the things I can, while letting go of the things I cannot change. All the while praying for the wisdom to know the difference.

 

 

When “Victim” Looks Like “Crazy”

Corridor

Last night I took an 11 year old child for an emergency psychiatric evaluation.

The hospital was actually very nice as far as psych ERs go, because it specialized in pediatrics. There wasn’t much wait time, and the place was clean and bright, and we were spared frightening visions of adults in acute phases of their illnesses.

The staff was also very nice: the child had to be seen by a medical intake team, a psychiatric intake doctor, an medical nurse practitioner, a social worker, and a psychiatrist over the course of five hours. Everyone treated this child gently, and they even gave us dinner while we waited.

But it was still scary. Because it was a psych ward. And in a psych ward you are locked in a room with no doorknobs and no moveable furniture. It may be painted like a foggy forest of beech trees, and the floor has sparkles and tiles shaped like friendly marine animals, but that doesn’t hide the fact that everything is smooth and there is nothing that you can break off and sharpen, and nothing that has loops or protrusions, so you can’t hang yourself off anything.

And the security guard has to sweep a wand over your shivering torso. And the nurse takes your can of ginger ale  pours it into a paper cup. The adult you’re with says, “I see what we’re doing; do you want these?” and shows her the plasticware that had come with your meal. The nurse takes them, of course. Sharps.

So of course you sit there wondering if what the bullies said about you is true. Maybe you really are crazy and imagining it all.

And unfortunately some of your friends had mistakenly thought they were in an after-school special and got a visceral thrill perpetuating the drama that you were acting “crazy”. They thought the fact that you muttered to yourself, because you were too afraid to speak aloud, or because it was the only way to calm yourself, looked like schizophrenia, and they felt so caring and important reporting that to the school psychologist.

After all, the school’s investigation had concluded that there was no clear evidence of bullying. Or if there was, it got lost in the shuffle of blaming the victim.

(I would say there are many explanations as to why questioning other kids didn’t turn up hard evidence.  Maybe the harassment was mostly below the radar, and some of the witnesses sided with the perp because they didn’t want to be next in the line of fire, and sometimes the events happened in unwitnessed moments.)

So “crazy” seemed possible to the administration and the school psychologist. Because the accused perpetrator seemed entirely rational, and you had been reduced to such a quivering, hysterical mess, and was no longer a reliable reporter. Crying so hard, so shut down, you couldn’t tell your side of the story or advocate for yourself.

But that didn’t mean the bullying wasn’t happening. It didn’t mean you were hallucinating or paranoid.

And so a lovely, fragile child, who maybe was predisposed to victimization because of certain qualities beyond their control (a rough start in life, a quirky personality, not very resilient, certain learning deficits, minority status, isn’t as popular, blah blah blah…) was told none of their peers corroborated their perception of events. Therefore, maybe the events weren’t happening. Maybe it was just in your paranoid, hallucinating head.

The end result was the best possible in such a case. No psychosis. Just an acute episode brought on by a perfect storm of prolonged, unrelenting stress: a move into middle school, the adoption of iPads for nearly all schoolwork, oncoming adolescence, and most of all months of harassment from the “popular” kids. I was glad to hear from medical professionals, instead of school administrators, that it was just as I had suspected. I was so happy to be able to tell this child that there were adults who believed, who had seen far too many cases like this, where the victim ends up in the scary place, trying to prove their sanity, because they can’t prove their victimization.

 

 

 

 

 

 

 

 

When You Send Your Children To The Moon

french-cooks-kid-eating-alone

Dar Williams’s song “End of the Summer” has been running through my head this last week. My son is off to high school, and my daughter has entered middle school. And it does feel like I’ve sent my children to the moon.

As some of you know, I work with children whose medical needs require a nurse at all times. One of my clients is doing so well, they now attend their district school instead of a “special” school.  (I use “they” as the pronoun, even though it is not grammatically correct, so as to not give away my client’s gender–I don’t want any identifying characteristics in this essay to violate their privacy.)

So this past week I took my client to their district school, and I got to experience all the anxiety and fear of entering an alien world when my client entered the middle school cafeteria.

My client sat at empty table. All the other kids filed in and filled all the other tables, and the child I was with continued to sit alone. I stood a little way off–I didn’t want an adult presence to be the reason they were being ignored. Eventually an aide to one of the other special needs kids came over and invited my client to that child’s table. That child was sitting near another special needs kid, and a cluster of physically and neurologically typical kids also sat at that table, albeit crowded down at the opposite end. So at one end: my client, an autistic child, and a child with Down’s Syndrome. At the other end, everyone else. But at least our little group of three wasn’t isolated completely, right?

Well, the following day we headed straight over to our new table. I stood with the two aides and we watched the social scene unfold. No one sat with our kids. Eventually, a lunchroom aid  approached some typical kids and guilted them into joining our gang of three. The same thing again the next day–our three started alone, then a few typicals got guilted into joining the “special” table.

Unfortunately, on that third day, a teacher announced that by the end of the week the tables would be “set”. Where you were sitting Friday determined where you would sit the rest of the year. We’d had a week to do our social maneuvering and the window of opportunity was closing.

So of course, Friday found our group of three sitting alone at a table for sixteen. No one was going to sit at that table and be told they must sit there all year. A day or two, sure fine, they can be nice to the special kids–but all year? Social suicide.

I get it; I really do. When I was in middle school, I would have  behaved the same way. I had so little social capital, I couldn’t spend it on compassion for someone lower on the social ladder. And I was freaked out by kids who were different from me. It wasn’t until I was an adult that I began to be okay with all kinds of people. Now I have no problem with someone who looks, thinks, or speaks differently. But it took exposure to get there. Most people have to get used to differences before they can embrace them. So young people, with their limited experiences, are really bad at being inclusive. That’s one of the reasons that integration and mainstreaming are valuable. People need to be near each other to get used to each other and eventually accept each other.

But it is hard on these intrepid kids who journey to the moon. All you moon dwellers look at them, see their differences, and shy away. Our little gang of three will most likely sit alone for the rest of the year. They will survive. They’ve survived worse. Still, I want everyone to take a moment to understand just how much courage it takes to boldly go where no one like you has gone before. How amazing you would be if you could look past their differences and your own fears, and really welcome these astronauts.

 

 

 

 

 

When Worlds Collide

In my day job, I’m a private duty pediatric nurse for medically fragile children. That’s a fancy way of saying I go to school with kids who need a nurse with them at all times. Kids with special needs get to go to school in the summer, so I work in New York while my own kids stay with grandma Yaya on Martha’s Vineyard.

On a typical day, I drive to my client’s house, load up their equipment, and make sure they are healthy and ready for school. Then we travel on the bus, spend the day at school, and finally travel back to their house. During the day I perform whatever medical care they require; basically, I am cross between a Sherpa and a mobile Intensive Care Unit.

The other day, I had a weird experience. My client’s class took a field trip to the library and while we were there I saw The Treasure of Maria Mamoun on a rolling cart, waiting to be shelved. It was the first time I’d seen the book anywhere out in the world. I couldn’t help myself. I blurted, “I wrote that book.”

The librarian stared at me, dumbfounded. “You’re kidding,” she said.

“No, really, I did. That’s me. I’m that person.” I pointed to my name on the cover, and showed her my nurse ID hanging around my neck.

The librarian got excited. She took my picture, she made me sign the book, she asked if I would come and do an author visit. Meanwhile, I got more and more nervous. My client was fine, never more than three feet from me, within view at all times, reading a book in a soft chair. But I was starting to shake. My separate worlds were colliding. None of the people I was working with knew I’d written a book. I felt shaky the rest of the day.

I like the anonymity of my nursing job. Most of the people I see through the course of the day don’t even know my last name. I am really just an extension of my clients’ equipment. When a client is in respiratory distress, I disconnect the circuit from the trach, apply the ambu bag, suction secretions, and reconnect the patient to the ventilator. I have to perform these functions quickly and calmly, before the oxygen in their blood drops too low. If a piece of equipment fails, I must repair or replace it with whatever is at hand, wherever I am. With my non-verbal client, I read the micro-expressions of their nearly immobile face, and use our binary decision tree to figure out and translate their needs. I enjoy working with these kids, in part because I like the way it enables me to disappear into my role. It’s the ultimate service. I exist for them, I communicate for them, not for me.

I wasn’t always this way. Over a decade ago, I had a very different, very public life. I was comfortable standing in front of a large crowd and speaking. Then through a series of strange events, I gave all that up and became a nurse. And I got very used to being a silent servant.

But I am not Emily Dickinson. I have not toiled in obscurity only to have my work discovered after my death. I wrote a book, and then sent it to an agent, and got it published. Here I am writing a blog. So obviously I don’t have (much of) a problem with sharing words I’ve written. I just seem to have a problem with sharing that I’ve written with people who know me in other capacities. Still, I am grateful to finally see my book out in the real world. Now, I just need to get over the shock.