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!
I’ve started and deleted a post about my experience on the Inca Trail three times now. What I’ve come to realize is that I don’t know if I should be telling a success story, a story about epic failures or a cautionary tale.
It seems like that could be the story of my life right now.
The Inca Trail: It’s A Success!
That’s how I started out my post, anyway. I did it! I took my son and I trekked the Inca Trail, all while carrying medical supplies and medication and more than a little trepidation in my very light daypack. And this is true. We had an amazing time together, and I’m so proud of showing him that the world is bigger than our own (beautiful) little upper left corner. I’m proud of showing him that it’s worth the effort to do hard and scary things, that the literal and figurative views from the top of the 14,000 ridge are worth whatever effort it took to get there.
But Is It Really? Maybe It Was Failure, After All?
So, here’s my secret. Day two of the Inca Trek for me? It’s a bit of a blur. Yes, it’s the hardest day and the steepest climb, but it wasn’t that. I’ve been hiking since I was a teen, and I’ve always loved going uphill, hard as it may be. It started off well enough. T and I left our camp about 6:30 and made our slow and steady way up. We got our passports stamped at the check-point, about an hour in. And this is where it gets a little hazy. This is where my body screamed, “Wait, not so fast!” For the next four hours, I remember footsteps and pain.
Here’s the thing about true functioning, if you’ve never had to think about it. You can walk when you can’t do other things. Higher level thinking and reasoning goes first, then creative thought, then coherent thought, then speech and the ability to stand up straight. (Being physically able to walk goes very shortly after that.) Putting one foot in front of the other is about as basic as it gets, and one can keep doing that, without being particularly aware of much else. So, I walked. I remember thinking “I feel terrible. God, I hope this wasn’t a mistake” and “if I take pain medication now, I will throw up on the Peruvian plant life. Keep walking.” I walked, T talked, the pictures are nice. At the top, our guide offered me some Advil and I do remember laughing as I took something much, much stronger, watching the view come into focus as some pain receded and then starting downhill for the last 90 minutes of the day. That 90 minutes I remember.
But I Made It, So…Let’s Call It A Cautionary Tale
I’ve had some mixed feelings since I got back, and here’s why. I’ve heard stories from guides, local ones here in the PNW, international guides and from our guides in Peru. They all have a story about someone who put themselves into a position or a situation that was foolish at best and dangerous at worst. I don’t think that was me….but maybe it was? I went into the trek knowing that I would have to rely on every ounce of stubbornness I had, every hour I trained for marathons before I was ever “chronically injured” and every bit of grit I had in me to keep going. It took all of that, plus 24 hours of recovery once we made it back to Cusco to be able to stand normally and another week or so to feel as ok as I ever do. Like I always have to do, I skipped a few planned activities after the hike, rode in a van, stayed at the hotel instead of walking. And I expected that; it’s part of my life now. Where I find myself second guessing is here: What if I really couldn’t go further? It does happen. In my mind and with my doctor, I had a plan. Stop, rest, use medication judiciously, in a way I might not at home just to keep going for the day, move slowly, but move. But what if I couldn’t move? Was it fair of me to put other people, maybe not at risk, but in the path of my injuries so that I could have this experience with my son? I still don’t know the best answer for that.
My Life: Success? Failure? A Cautionary Tale?
I ask these questions all the time now, in real life. What is a successful career? Does cancelling on my kids (again) constitute failure or are we all just doing the best we can and teaching empathy along the way? I don’t have answers, really, for travel or for life. I think my life is all those things now. It’s a success because I’ve tried to build a new life that fits into a totally changed framework, travel and all, and I think I’ve done that with as much goodwill as I could. It’s an epic failure because….well, partly because I had to learn how to live in a changed body and there are bound to be some bumps along the way. Sometimes I was gracious. And sometimes I was…not. I think mostly I was angry. Let’s call it “how you learn”.
But maybe, it’s redefining success and failure? 20 years ago, I would have considered using porters on a trail an epic failure, akin to not pulling my own weight. And I might not have considered part-time writing “successful” 20 years ago, either. Now, it’s more than I imagined I’d be able to do 7 years ago, when every day was difficult in its own new way and a hike seemed like a fairy tale. And the cautionary tale? Work hard, be kind and consider other people. I’m pretty goal-oriented by nature, and when you are suddenly thrust into a body that doesn’t allow for a straight path to goal, what do you do? I’ve learned to be a little kinder in my definitions of success and failure, and to value whatever I am able to accomplish. More than anything, I’ve been reminded to appreciate the people who help me along the way, whether that is over the Inca Trail or in my own corner of the world.
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:
Sunrise in the Andes. My 12-year-old (T) is bounding down the Inca Trail, jumping over rocks, running up hills and chatting with other trekkers, excited to reach Inti Punku, the famed Sun Gate and the entrance to Machu Picchu.
“He is like a mountain goat the last two days,” our guide, Elias, says to me. “I didn’t expect this.”
“I know. I tried to explain.”
In June of this year, my son and I hiked the famed Inca Trail. My son, hungry after a 2-hour drive, and just before the start of the four-day trek, wolfed down a cheese sandwich in town. Wrong choice. Combine that cheese sandwich with a tendency towards anxiety and a touch of altitude sickness and he hit the trifecta of “things that make you feel lousy.” Then worse. Then he was pretty sure he was going to die, right there at the Passport Control station at Kilometre 82, the start of the Inca Trail.
He freaked the freak out.
“I’m fine mom. I can make it, just to…there.” T threw himself onto a bench. “I can make it” so slowly, to the next rock, ten yards away.
(Note photo where I am carrying both backpacks. T is….standing.)
So what do you do from there?
It takes months to get a permit for the Inca trail. Per the Peruvian government, you have to take a guide and a team. You have one shot, to enter on the day of your permit.
My kid, the most adventurous kid I know, the one who charges up hills with a backpack, drops into anything on his skis and checked Vertfest off his list at twelve year old, was splayed dramatically across a rock. My kid, who also lacks a single chill bone in his body, whose exuberance for life is matched sometimes by his frustration when things go wrong and by anxiety when things go really wrong, was scared. My kid, who a day before, wanted to hike trail “more than anything!” but wasn’t so sure in this moment.
Our guide thought we should turn around. The passport control agent suggested a doctor’s visit.
T and I thought we should go. We had a heart to heart and he realized that yes, he didn’t feel great, but he was also in the middle of an anxiety-induced meltdown. We both know him well enough to know that the best solution is a little time and space to calm down. Now try to explain the idea of childhood anxiety to your very highly trained guide, whose job is to keep people safe, and who, I’m sure, did not want to carry my kid out off the Inca trail.
Let’s just say he was skeptical.
I convinced him (ok, begged, but really nicely) to let us go two miles. If, at two miles, T still looked lousy, we would turn around.
Our guide agreed. He told us later he figured it would be a slow two-mile slog and then we’d all turn around and head home. He didn’t think there was any way T would make it.
The funny thing about anxiety, at least for T, is that once he calms down, he’s ready to face whatever he was scared of, right then. I think he likes to know that he can choose how to experience the world, even if it didn’t seem that way in the moment.
So, after ¾ of a mile, T took his backpack back. After a mile, he picked up his pace. By two miles, he was chatting with a group of hikers who stopped for snacks at one of the houses along the trail. (Because, exuberance for life. He’s the best.)
We finished our snack and shouldered our backpacks. I looked at Elias, waiting to hear his decision. Did he think T could make it? They were already heading up the trail, talking about the ruins, the campsites and the people we would see on our four-day walk to Machu Picchu.
One of the reasons I started over at Almost Fearless was to learn. And learn and learn. Because yes, I’m one of those people who would happily stay in school forever and one of the things I really love about writing is that it provides an excellent reason to research new things. It’s like my job is learning: about people, about places, about cultures or food or parenting or sports or investing. I have a reason (excuse?) to study everything. Which I truly love.
This week, it’s been learning how to integrate social media into a publication. I’m not sure I have the best eye yet for photos, but I’m getting better every day, and surprising myself by enjoying finding the photos. This week’s topic: Toddlers Who Shred and Tear Up The Slopes.
For anyone wondering why I chose that topic, here are exhibits A, B and C. My kids when they were tiny skiers:
Hi All! I’m posting a link to my first Almost Fearless piece. This is such a cool new magazine-it’s all about outdoor adventure and world travel with kids! (Sound like anyone you might know?) I’ve been officially doing this freelancing thing for almost a year now, and I realized that like anyone starting a new career, I could benefit from some behind the scenes immersion. The last time I took a journalism class, I didn’t even have email. Or a cell phone, let alone social media. So I’ll be spending a few hours a week over the next six months learning more about submissions and copy editing and research, and how a publication functions in today’s media. And some of that, of course, is writing for them. Make sure you go to their homepage too-I’m not going to lie, it’s pretty cool to have written the “featured article”.
Here’s the article:
And here’s the home page: