I’m guessing after this, no parents will expect my daughter to dance with someone just to be nice.
For Scary Mommy:
There’s an awful lot of not-so-positive-media out there about people with exaggerated disabilities gaming the system, not wanting to work or looking for a free ride. Every internet troll is pretty sure they’ve seen “someone”, who claims to have a disability, climb a ladder, paint a fence or go for a run. Proof positive that “someone” should be working, no questions asked! (Spoiler: Not proof.) My personal favorite was the commenter who saw a younger woman leave her cane behind to grab her toddler as the kid made a run for an open door, so therefore the woman must be fine. Seriously? Ignorant much? Parent ever?
You know my story: Hidden disability, look 100% normal some days, great brain, miss my first career every day. If the internet trolls saw me on the street, they’d cry “faker!” for sure. The reality is more complicated, and much more nuanced. Internet trolls don’t see me when I spend four days at home in my pajamas, curled up in a painful ball, because that’s as good as those four days get. (They’d probably tell me I’d be fine if I just got out more, because, trolls….)
So Why Can’t I Just Go Back To Work?
Well, physical jobs are 100% out, as are jobs that require me to, you know, show up. Even though I “look so normal” on a day I make it to the gym, regular bouts of “four days in pajamas” run through sick leave faster than I can rack it up. So that leaves jobs that allow me to work from home.
I’ve been a writer for years, with the idea, when my kids were younger, that maybe someday it would turn into a book or a blog or a gig “on the side”. I have a second skill, and an internet connection that means I can parlay that skill into work, completely from home and on my own time. I’m starting with every advantage. I’m smart, reasonably articulate, a practiced writer with a specialized degree that might even help me write about healthcare.
It still might not be enough, in the face of my physical circumstances, to turn into a self-supporting career.
Jobs require reliability. In my case, freelance writing means writing to deadlines. It means writing quickly and steadily, as more words means more articles means more pay.
So, what happens when the deadline is Friday at 3:00, but Friday is a day that I can’t function? What if I need to interview somebody on a day that is painful enough that speaking is difficult? What happens on the days I can’t write much, or at all?
I can, and do, push through (in writing and in life) and make a deadline. Make two. Maybe even three. But the work suffers, I suffer and by deadline three or four, the house of cards comes crashing down. It’s possible to push through for awhile, but not in perpetuity. So I scale back, I work on one piece at a time, or maybe two. I work with enough lead time to get ahead. It’s better than nothing, but it’s a challenge to build a career. (Also, you have no idea how badly I wanted to call it “lede time”, because, puns.)
Writing is my solace, and doing it professionally is the light that came from the darkness of disability, but that reality sucks. It is the reality of trying to work in a body that can’t catch up, and keep up, not forever. I can see the pieces on the horizon, the pitches and the growth as acceptances flow in, as requests trickle in. I can see that oh! that’s the perfect article for me…. but you need it by 2:00? I can’t promise to do that. Not today.
I’m trying to build a career around an unpredictable disability. I just don’t know yet if that’s possible, no matter how many times I pitch and write and wish it into existence.
And that’s with every advantage. Now imagine you don’t have a high school diploma, or skills that transfer beyond a manual labor job or reliable access to the internet or a phone, or enough money to buy food. What if managing your disability alone takes hours a day? How does one just “go back”?
I’ve been so lucky as I’ve started working my way into the world of freelancing writing. I’ve worked with great editors, who are also fun and interesting people in their own right, and have enjoyed both the writing and the conversations that come up around other things. This piece started off as an e-mail exchange about a book series I love, moved on to great books that also incorporate sports, and finally turned into an quick guide to great books for active kids. And a day I get to mix my love of children’s literature with my love of sports and adventure? That’s a great day!
These published on Almost Fearless in the last couple weeks, actually, so I’m a little late to the game. (That’s what happens when I go on vacation.)
Maybe it’s too late for holiday presents now, but these are still some fun ideas to get outside with your family. Have fun!
It’s been a busy week! Here’s what I’ve published this week (you know, if you’re looking for some light reading).
Look for the next post in a few days to learn about my story on the Inca Trail!
For Almost Fearless:
Every now and then, I write a piece that helps my own kids, and me. This was one. Hope it helps some other parents with kids who love to play, but still fight some fear.
I woke up to an email from my daughter’s middle school in my inbox this morning. The email explained that the school district had been working with law enforcement last night, trying to determine if reported threats of violence were credible. The police received several phone calls from students and parents, citing whispers about a gun in school. Today.
Las Vegas happened two days ago.
My daughter sat across the table from me. Between bites of cereal, she sang along with the radio.
Then she asked why I was crying.
She’s eleven. She loves books and music and sleeps with a stuffed animal. She is already terrified of mass shootings.
Should I tell her there were threats? While police believed there was no validity to the threats, there were armed police at the school today as a precaution. Was 6:45 this morning the time for another discussion about public shootings and a threat to her school? It seems like I ask myself these questions every day.
If you are a proponent of an unfettered second amendment, I have a few questions for you instead.
Why does your right to stockpile weapons of war trump my daughter’s right to life, liberty and the pursuit of happiness?
Is my daughter reveling in her liberty, in her freedom to fear for her safety in every public space? My child is scared of being shot on the street. At a concert. A movie. The mall. Or school. And there is precedent for every fear. Maybe it doesn’t curtail her actions or change her movements. But living in fear is its own type of prison, one fortified by every person who claims his right to collect guns is greater than her right to safety.
I was crying while I dropped my eleven-year-old off for school in front of armed police. There is nothing happy or freeing about worrying if your child will get shot at school. We reached a state in America years ago that the pursuit of happiness fell far behind the pursuit of money and ammunition from the NRA.
What part of “a well-regulated” Militia don’t you understand?
A well regulated Militia. It’s literally right there in the first sentence. How does “well-regulated” translate to barely regulated? Unregulated?
How about the security of the State?
How did the Bill of Rights get so twisted, that the security of the State doesn’t include citizens feeling safe on the street? Children feeling safe in their schools?
Part of the job of government is to regulate danger. We have laws relating to the operation of motor vehicles, food safety standards and recalls for products that “might” hurt an infant. Guns are treated as some magic object, free from the cumbersome burden of product safety research or regulation.
On the subject of research, why isn’t there more research into guns as a public health threat?
In 2014-2015, there were four laboratory-confirmed cases of Ebola which originated in the United States. This caused the CDC to revise guidelines, to monitor the patients’ friends and possible contacts. Nationally, staff was trained on Ebola containment protocols. The military was deployed to West Africa. Research led to changes in patient care and a coordinated public response across multiple countries and continents.
In 2017, 1516 people have died from gun violence. Yet the CDC isn’t allowed to research gun violence.
What about the right to an appropriate public education?
Off the top of my head, I know four kids who stayed home from school today. They didn’t go to school because they were scared they would be shot. The parents felt strongly enough to allow those kids to stay home.
As part of an appropriate public education, the middle school already has active shooter drills. Every kid has an “active shooter plan” in place. Most of the kids plan to run for the woods.
I’m not upset with the school district. Desperate times call for desperate measures, and they have to do what they can to keep the kids safe, including an “active shooter” plan. I appreciate their taking threats seriously, involving law enforcement and keeping the parents informed. I’m sure they feel as helpless as I do. But to claim that gun violence doesn’t impact learning is somewhere between obtuse and criminal.
What do I say to my daughter, every day? Do I ignore the threats? Do I discuss it? Do you truly believe these discussions make an eleven year-old feel free?
I sent my daughter to school today because I believe that if I keep her out of public spaces, out of school and away from her own pursuit of a best life, I let the gun interests terrorizing our nation win.
But what do you say to an eleven year old who is already scared? Ignore it? Do I suggest she just hug her stuffed bunny a little closer at night and hope for the best?
There’s not much freedom to choose, honestly. When she gets home today, we will have our first discussion about the idea of “if you hear something, say something.” I will teach my eleven-year-old to police the halls of her own school and community, to look out for her own safety and that of her peers. There’s little choice in a country so in love with guns that for many people keeping an arsenal is more important than keeping her safe.
You really want to argue that teaching my daughter to run for the woods in the event of a school shooting is allowing for the pursuit of happiness?
A quick piece on the reasons to exercise outdoors for as long as we can!
I’m lucky enough to love where I live and enjoy the outdoor adventures available in the area. I wrote about it for this summer, providing some information and context on the towns behind the TV show.