Parenting, Politics and the Women’s March

I attended a Woman’s March today with my daughter. Upon coming home, I read comments from several friends, asking why we couldn’t wait and just give the administration a chance. I’d like to address the very real actions of this administration that helped us decide to march. Why we decided it was worth being called names, losing sleep and standing in one place for 90 minutes just waiting to get to the route before spending another 8 hours on our feet.

My top five reasons to get political with my daughter today:

1) “I moved on her like a bitch…and she was married….I just start kissing them…..and when you’re a star…you can do anything. Grab ‘em by the pussy.”

-The President of the United States of America

This quote alone is enough. This is the President of the United States bragging about sexual assault. This is not me worried about something he might do; this is me worried about what he has done, and how he might abuse his position to assault other women. This was the end of his “chance”.

But since that wasn’t enough for voters, here are the others:

2) Donald Trump signed the order to pave the way for the ACA to be repealed. He campaigned on it, and he did it.

If you read this blog, you know I have a medical condition that REQUIRES medical care. Without it and the medical equipment delivered to my house every month, I have two choices. I can go to the ER every few days. Or I can die. This is not hyperbole. I need actual health care, not “access” to health care, the same way I have “access” to a three million dollar house, if I could just afford it.

No, my health insurance is not through the ACA. But I need the protections provided in that law, because without them, I am one walking pre-existing condition. I’m lucky enough to be well covered, but my fate is also the fate of many others who need the same protections.

3) Betsy DeVos, for so many reasons.

Look, I’m going to make a lot of people mad and say that I understand the drive for vouchers, and while my kids attend a great school that they love, there was a time we considered private school and vouchers would have helped us get there. I also went to private school as a child.

And in my very Christian private school education, I had truly amazing teachers. Except for science. Because we didn’t study science. I could recite large swathes of the Bible from memory by 2nd grade. Science, not so much.

Here’s what I learned about “science”: Charles Darwin was a bad guy and anything that supported evolution, bad. The Earth was 6,000 years old. You know what supports evolution, but also medicine and manufacturing and innovation? SCIENCE! When my kids started doing really cool science projects in elementary school, I realized just how much I missed. Did I catch up? Yes, but it required a crisis of faith to get there.

In a world that increasingly relies on science and technology, I have reservations about tax dollars going to fund schools that can ignore subjects based on religious preference, and she has worked to include religious schools in voucher programs.

And also, guns in school. And grizzly bears. And the IDEA law. And Title IX and civil rights and sexual assault (see number one and put it in this context).

4) And while I’m on the topic of civil rights, and LGBTQ rights, and climate change and disabilities….these are among the topics that were removed from the WhiteHouse.gov page within hours of Donald Trump’s inauguration.

Three of these pages directly relate to my children and I. The fourth effects people I care about. They all effect people, period.

5) I’m going to lump several in as “other cabinet picks”. A director of the HHS who has repeatedly stated the direction for the ACA, Medicare and Medicaid is a direction I believe to be harmful to actual people in this country. A director of energy with conflicts of interest and a seemingly questionable understanding of the department he would be tasked to run. A HUD director who has no background in housing or urban development. Steve Harvey.

6) Ok, I said five, but I’m also going to throw in disdain for the CIA, the FBI and the NSA. Giving a speech to the CIA and discussing the size of the crowds on Inauguration Day and the number of times he has appeared on Time magazine’s cover. The “war on the press”. The war on Saturday Night Live. (Thanks, SNL….it’s comedy gold.)

Oh, and 7) A guy in line for the bus. The conversation went like this:

Him: “You’re going to the protest?”

My daughter and I: “Yes.”

Him: “You’re the problem. You think people should have to serve anyone, help anyone…like those bakers. You drive people out of business. You’re ruining the country.”

Me: “….”

Him: “What if a 30 year old man wanted to go in the bathroom with her (points to my daughter) just because he identifies as a woman. That wouldn’t bother you?”

Me, my daughter and my mom, all at once: “No.” “That’s fine.” “Not at all.” (I really love them. Spoiler: He left when he realized it was an entire bus full of people going to the march.)

I marched so the administration, and all our local reps would pay attention, and to try and stop the carnage of the last two days (thanks for the quote, DT). I took my daughter because I hope she learns to be involved now, and it carries through her life. We did it because we’ve been watching what has happened and discussing it and she wanted to go. We marched because we believe that deciding to “wait and see” will do even more damage, and OMG, there’s already enough. We marched because I believe that this administration will increase my daughter’s risk of sexual assault, and the only danger for a 30-year-old transgender woman is that she will get assaulted herself in the men’s bathroom. I took my daughter because in her life, I want her to stand up for herself, but also for others.

Hours, Minutes and Moments: Living with a Hidden Health Condition

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.

 

Why Loud Voices?

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.