Here’s the latest installment in the series. This time the kids and I tried Bouldering. Another spoiler: They were much better at it than I was! Who knows what wild activity we’ll try next?
http://www.activekids.com/articles/that-time-i-tried-bouldering-with-my-kids
On a lighter note today, here’s the first article in a series in which my kids and I try out fun and unique activities. Thankful for my fun tweens who are always up for this! Next month…indoor bouldering!
http://www.activekids.com/yoga/articles/that-time-i-tried-hot-yoga-with-my-kids
In 2011, I had a career I loved. I had a Master’s Degree and more than a decade of experience in my field. I had great health insurance through my husband’s company. I had a spouse with a solid career, a preschooler and a kindergartner. We owned a house in a community we loved, with a mortgage my husband and I could comfortably pay on our two incomes. We had months of living expenses saved, just like we were taught.
In 2011, I had routine surgery.
It didn’t go so well.
In 2011, I had “complications”, a euphemistic name for nerve damage, organ damage and a new need for medical devices to stay alive and healthy. I still have them now.
In late 2011, I tried to go back to work.
That didn’t go so well either.
I told myself to try harder, push more. I told myself to believe in mind over matter.
I collapsed on a patient.
I sat down and couldn’t get back up.
I went to yoga and left in an ambulance.
When your body truly fails you, it doesn’t happen because you are lazy or because you’re not trying hard enough. It happens because you are in the middle of a medical emergency, and sometimes, that emergency doesn’t have a perfect ending.
It would be nice if I could trade my iPhone for my career.
By late 2012, I had no career. I had a Master’s Degree and more than a decade of experience that got me nowhere, since I couldn’t function well enough to work, no matter how hard I tried. (And believe me, I tried.) I was one of the lucky ones. I had a funny, compassionate spouse with a solid career and a first and second-grader in a school with wonderful teachers. We had a house in a community we loved. But we had one income, a mortgage we couldn’t afford anymore, and thousands of dollars of medical bills, leftover despite our “great” insurance.
In the USA, something like 18-20% of bankruptcies are directly due to medical bills. Another 35-40% are medically related.
Medically related.
As in, no matter how hard I tried, I couldn’t work, couldn’t function at a “normal level” because of my health.
Do you have any idea how frustrating that still is, in 2017?
Do you know how laughable three months of emergency savings becomes, when it takes a year of medical trial and error to realize that your career isn’t your future anymore?
When I say that I was one of the lucky ones, believe me. We had family help in our worst moments. They helped keep us from losing our house, and sometimes kept me from losing my sense of myself. Along with their help and my (no longer existent) retirement fund, we still have a house in a community we love. I have a 5th and 6th grader who go to local schools with wonderful teachers. I have a funny, supportive spouse with a solid career and great health insurance.
Still, it would have been nice to trade my iPhone for my house.
My point is this—Through a combination of hard work, education, circumstance and luck, we did everything right. We were upper middle-class. We followed all the rules about how to be economically savvy, so that we could ride out any emergency.
It wasn’t enough.
I still look back at 2011-2012 as the most traumatic time in my life. I was scared, injured, in pain, devastated over the loss of a career I loved and terrified of losing my home and my community. We only made it through with help. A lot of help.
Emergencies are the ones you never see coming, and they don’t follow your rules. And giving up an iPhone won’t change a thing.
My daughter and I started a mother-daughter running club this fall. Spoiler-we were the only two members. Read about what we both learned here.
http://www.activekids.com/running/articles/how-running-strengthened-my-relationship-with-my-daughter
Sorry for the brief hiatus, folks. Minor health crisis, which is all fine now but took my time and attention for a bit. In the meantime, this went up! Hooray! If you have younger kids and are looking for ways to keep active and have fun during the cold winter months, this is for you. Enjoy!
http://www.activekids.com/recreation/articles/keep-kids-moving-all-year-with-activity-jars
Since I started this blog, I’ve been approached by several people who are living a story similar to mine, hiding their health in plain sight. We are all involved in life, in challenging jobs or parenting and the volunteer work that accompanies it. We are the first people asked to take on a project or to work a little later or to fix just this final problem. And we all say yes, over and over until we can’t do it anymore.
When we finally say no, we worry that we look lazy or uninterested or self-involved or maybe even crazy, when really, we are physically incapable of continuing.
These people all asked for a voice, for someone to try and show the world what it looks like to function in a body that sometimes works against itself. “Functioning” looks different in each area of my life, whether that is parenting or work or daily activity or navigating the maze that is our medical system. I’ll touch on each in greater depth over the next couple weeks.
Today is an overview and I’ll tell you what I can.
My life is lived in a combination of numbers, of hours and minutes and moments and choices.
It is the ticking of the clock.
It is watching the minutes and hours pass by, waiting to be able to stand. Waiting to be comfortable enough to fall asleep. Waiting for my body to relax, for the imagery or the breathing or the distraction or the medication to do enough for me to continue on.
It is the translation of a 1-10 scale, one that I am often asked to repeat, when I’d rather forget it exists.
Three or four is a great day for a run.
Five means the gym and an article written, a deadline met.
At six, I can drive my kids to school and yoga can calm my body down.
Seven and my focus turns inward. I take the wrong turn, the wrong exit, because my energy is absorbed by breathing…..standing…..driving.
I double over at eight, unlikely to stop the trajectory of pain. At eight, I better get home, and quickly.
Nine means I’m stuck in a child’s chair in a classroom, or a couch at a friend’s house or the floor of the clinic at work, reliant on….someone……to get me home if I haven’t made it there yet.
At ten I hear ambulance sirens.
It is hours and afternoons and days lost.
It is a constant calculus, a determination that yes, I can keep walking for the next 20 minutes, that I can keep standing for the next three hours, that I can still drive and cook and write for the next five. Sometimes it is the knowledge that I can’t move for the next five hours. Or ten hours. Or two days. It’s learning that there is nothing to fix and nothing to change and nothing to do but wait.
It is 21 medications, two surgeries and a dozen euphemistically named procedures.
It is medication trials that run on, sometimes for a day or two, sometimes for a month or two, always bringing new side effects but never the desired effect. It is “no really, this won’t make you feel groggy/feel sick/feel tired…..it did? Sometimes it does.”
It is 13 medical practitioners and countless nurses, assistants and schedulers.
It is the amazing doctors, nurses, physical therapists and others, people who have helped when they could and offered support when they couldn’t. It is three women in three specialties who have smoothed my transition more than they know, and more than I can say, by their skill and grace and humanity.
But it is also egos and assumptions, with occasional doctors who are more concerned with what they think should happen than what actually works, with hearing their own voices instead of mine.
It is understanding and misunderstanding and learning to be my own best advocate. It is believing that sometimes the best course of action is no action, and then convincing myself to search again for answers and options.
It is placing value and managing expectations, accepting that doing some is greater than doing none or all.
It is learning that I can’t do everything, many things or most things. I can pick three-areas I devote my energy with varying success. The rest has purposely fallen away. It is choosing to stay active, to nurture relationships and to keep learning. It’s not a perfect science, and there are always days I fall short. It is deciding to write an article but skip a PTA event, no matter how often I am asked. Admitting I had to do less gave me the space to find my center, to find the eye in the midst of the tornado and to move forward.
It is choosing to enjoy the moment, even if the moment is harder to come by.
People in Seattle appreciate the summer in a way I’ve never seen in other locales. After the general absence of the sun for nine months, we embrace every chance to run, hike, bike, sunbathe, swim, walk, shop, eat or lounge outdoors. We revel in the perfect temperatures and the abundance of activities. This is the mindset I’ve adopted after six years of being uncertain how tomorrow will fall. I have learned to find joy in the success of those I love, and I appreciate my own adventures even more.
Because sometimes, we all need to laugh at politics or parenting or life, I present to you:
The Day I (Really) Should Have Known Trump Would Win
Two weeks before the election, a friend and I went to Nashville for a girls’ weekend. Nashville is a vibrant city, filled with young people, artists and musicians, all hipper than I will ever be. The bartender in one of the trendy restaurants, a recent transplant from San Francisco, told us that 90 people a day are moving to Nashville. While I didn’t check his numbers, it’s clearly an up-and-coming city.
One night, we wandered “South of Broadway”, with its Honkey Tonks-bars and clubs where amazing Nashville musicians play for tips. Like Goldilocks, it took us a few tries to find the club with the right fit. The first bar was too hottie, crawling with bachelorette parties, the second too filled with sleaze. The third was Layla’s, a casual music club and the home of Nashville Hillbilly Music, according to their sign. We grabbed a spot at the front of the balcony bar, and chatted with an older couple next to us.
They were gregarious and easy to talk to. They had been visiting Nashville from the mountains in North Carolina for years, they said. They told crazy stories about New Year’s Eves on Broadway and lamented that lack of dance space in the bars since the tourists moved in.
Thirty minutes into the music, the husband, who was a couple drinks in by now, leaned over to me and whispered, “So, who are you going to vote for?”
Me: Shocked silence.
I live in Seattle. I believe in marriage equality, in women’s rights and racial harmony. I want a ban on assault weapons, laws that support reproductive rights and legal pot, even if I’ve never tried the stuff. Hell, I drive a Subaru and I’m not actually into country music. I am a walking liberal stereotype. I know this.
I tried to change the topic, to steer the conversation in another direction. I tried to pivot.
It didn’t work. “No, seriously, I want to know. Who are you going to vote for?”
Me: Uncomfortable silence.
I told him that I thought that politics and religion should stay out of the bar.
“Now I’m really curious! Who are you voting for?”
Finally, I told him I was a woman from Seattle, and those two facts alone should point him in the likely direction of my vote.
Which is when his wife leaned over and said, “But do you like facts?”
Yes, I told them, I do. I do like facts.
There was a pregnant pause. Then, they both started to talk at once. “So, who are you voting for?” he said. “Do you care about Benghazi?” she said.
At this point, my friend, also a walking liberal stereotype, started eyeing the door.
We had a moment of reprieve. Two young guys on the other side of North Carolina couple jumped the conversation, to shout their support for Trump. Then another. And a few more.
There we were. Just two liberal 40-something gals at a spontaneous Trump rally in a bar in Nashville, the town that is young and hip and artsy and full of musicians and transplants from all over the country.
Right there. That’s the moment that I should have realized what this election would bring.
I leaned over to my new friend and his wife.
“If you are going to run us out of the bar, could you give us a little notice? We just want some time to get ahead of the crowd and get down the stairs.”
I was enveloped in an inebriated hug. “We’re not going to chase you out. You’re an American. I’m an American. We gotta get along. Also, my wife and I are going to steal Johnny Cash’s mailbox tonight.” Then he high-fived me, repeatedly.
Everybody returned to the music, except my Johnny Cash super-fan friend. He proceeded to tell me, in great detail, the elaborate plan to steal the mailbox. Where it was located. Why it had not yet been liberated from its legal home. How he and his wife were the perfect people to own it.
He was hilarious, although possibly not covert enough for his operation. I left shortly after and on my way out, I told his wife good luck with the Johnny Cash mailbox mission. Her mouth dropped open. “I can’t believe he told you that!” Then she hugged me goodbye.
I don’t if they ever managed to get Johnny Cash’s mailbox. But if it’s gone, I don’t know anything about who took it or where in the mountains of North Carolina it might be. Because I’ve got their backs. Just like they had mine.
I’ve said part of my goal is to raise kids “with loud voices”. I want them to be engaged in the world and able to advocate for themselves and for others. But what does that mean, and why do I care?
A Little Background
When I was growing up, the family joke was that my parents raised three only children. Despite our shared genetics, we didn’t particularly look alike. We had different hobbies, followed different sports and a book recommendation from one sibling was likely to be an unfinished read for another. And it wasn’t just the kids.
Whether adult or child, we clashed right down to the fundamentals. In our family of five, we covered all side of issues ranging from evolution to trickle-down economics to gun control to worker’s rights to a woman’s place in society. The first Presidential election all three kids were old enough to vote in was Clinton/Bush. With five family members, we voted for at least four different candidates. If I had to label us politically, my family included a Republican, a Democrat, a Libertarian, a Socialist and an “Oh, God, please stop talking about politics.”
This is not to say that we didn’t enjoy each other. I got my love of the outdoors from both my parents, of water from my mom and skiing from my dad. I spent happy hours in the library in college, studying with my brother. We all share a love of science and real joy in learning. And we were all raised to believe that actions speak so much louder than words.
My Dad, the Not-Quite-Accidental Activist
My father was a pilot, and a good one. He was a check-pilot, making sure others were trained and capable. When I was seven, the pilots’ union went on strike, for a whole lot of legitimate reasons. He was home for a bit, and then we heard the strike was ending the next day. But, according to family folklore, union leadership then decided to renegotiate the contract. The strike was back on.
A few days later, he went back to work, crossing picket lines. I got the mail the day there was a voodoo doll in the mailbox. I answered the phone to a bomb threat made in a rumbling voice. When he was home next, my dad introduced us to Ted, who was “a friend staying with us.” He also told us to play inside for a while.
Ted was an armed guard who lived with us until the strike ended. I was seven.
This isn’t meant to be an indictment of my dad, the union, the airline or anybody else. (Except maybe the guy who made a bomb threat to a seven-year-old. You sir, have issues.) To this day, I don’t know the exact sequence of negotiations from that strike. I do know that my dad showed he was a person who put principle first, even if it was unpopular or uncomfortable to do so. This is the common thread passed on to his children, despite our conflicting views on just about everything else.
So What Does That Look To Me?
A loud voice is different than a brash voice. It’s easy to get caught up in the screaming, to call names but scrimp on solutions. I believe as strongly as anyone in the causes that matter, in my case kindness and tolerance, freedom of speech and religion and a country free from bigotry. However, it’s not as easy to dismiss half a country, when that half includes multiple members of my own family. Yes, I disagree. Yes, I will fight to the end for what I believe. But I don’t get to call (part of) my family stupid and believe that’s the end of it.
Fighting for what I believe requires understanding the issues I am fighting for. Because I don’t get to dismiss people and their arguments out of hand, I have to listen to the multiple sides of an issue. Believe me, it makes me crazy sometimes! But it also makes me more aware and better versed on an issue, which hopefully leads to sustainable change. Barring people spewing hatred, listening to an opposing view is not complicity.
I learned from my dad that it takes a little courage, or maybe a lot of stubborn, to stand up for your principles. It will be uncomfortable. Using your voice to effect change is rarely simple or short. It takes individual people making a decision that there is a line that cannot be crossed (or maybe, in my dad’s case, one he had to cross). It takes walking up to that line, and staying there, even if people put voodoo dolls in your mailbox. It takes determination to change a country.
My kids are tweens, in the midst of finding their voices. I find myself in the unique position of redefining my own voice. I think my kids and I would have gotten here eventually, but the twin catalysts of my health and this election have given us a good shove down this path. My plan is to choose my line, listen well and then act with as much conviction or sheer pig-headedness as I am able. I hope my kids join me. Even if they don’t, I hope they learn to think, listen and act for themselves.
My life is a dichotomy. I spent 20 minutes this morning sorting soccer schedules and 20 minutes scheduling space for a “Social Activism 101 for Kids” class. My daughter and I formed our own mother-daughter running club. It is our happy space and time together, except on the days that I can’t stand up to run. I spent the first 15 years of my career helping people stay active and the last five years managing my own health problems.
I thought at first that I would write about staying active with my kids. If I had a dollar, or even a quarter, for every time someone has asked how our family-and specifically my kids-stay so active, I’d be well on my way towards saving for an extreme vacation. What’s the best exercise for kids? (It depends.) How do I make my kids do a sport? (Good luck with that.) Why don’t your kids play video games? (They do sometimes, but don’t see the need.) How do I convince my kids to run with me? (They like it.) And the most common: How did I get my kids to be active? (I’m active with them.)
I have lots to say and years of experience, because yes, I have two really active kids in an active family. They ski, run, play soccer, swim, enjoy the outdoors, ride bikes and ask for active vacations. And I do it with them. Except when I can’t. How do I explain that my family has learned the value in activity because sometimes, I can’t stand?
This is the first time I’ve said out loud that I’m a person with a disability. Even after 15 years of working with people with disabilities, some of the most amazing people I know, I still don’t like to apply the label to myself. I want to be more. But the truth is, every person with a disability is more. And I believe that goes beyond the standard idea that “we are husbands and wives and friends and workers and writers and….” Yeah. Yeah. But I mean that we are more than we were before we “became” disabled or maybe before we became a parent or a spouse or a friend to someone with a disability.
Like the Grinch, my story made my heart grow three sizes, although maybe not in one day. I am more aware. I know what it feels like to belong to a group that doesn’t have the loudest voice. I am empathetic, knowing that every taunt and every stare at someone with an obvious physical disability could just as easily be pointed at me. I am kind. After going though something like I did, how could you ever wish pain or suffering on another human? I am strong. Yes, it’s true that I have physical limitations. But don’t discount the mental and emotional strength that come from coming through a challenging time, from learning to advocate for yourself or your friend or your child. And sometimes, I’m angry. I’m Pollyanna at heart, an optimist through and through, but that doesn’t make me blind to my own losses, or to the losses and hurt of other people.
It took the last year, the divisions I’ve seen in my family, my friends and my country to decide to stand up and stand out. It took watching a candidate for President make fun of a disabled reporter, a reporter who I’m willing to bet works harder than most to do his job well, to show that he is smart and capable and more. It took a rise in hate crimes and a philosophical Continental Divide to realize that if I plan to Be the Good, first I have to be honest. Because when that reporter was mocked, I bet not one of my family or friends thought of me. And maybe if they had, they would have been just a little more horrified, just a little louder.
So here I am, with the two halves of my life colliding. I’m choosing to tell my true story. How do I balance the two things I find most important, and how do I pass those values on to my children? I want them to live an active life, one filled with family fun, laughter and wild adventure. While they are on that adventure, getting buffeted in ways they didn’t plan, I want them to be aware and empathetic and kind and strong. And yes, when they see something degrading or hurtful or dangerous to those who have a quieter voice, I want them to be angry.
I choose to teach my kids that they can be athletes and scholars and activists and adventurers. They can be more. We can all be more.
Might Write for Chocolate 