Traveling With A Health Conditon Is Hard…Why I Do It Anyway

My son and I are currently sitting in the LAX airport, in front of Gate 138, waiting to board a flight to Lima, Peru. From there we fly to Cusco and spend a couple weeks exploring ruins, night hiking in the Amazon and sea kayaking on Lake Titicaca. I hope.

Here are the two things I know for sure about the trip. One, T and I will have an amazing adventure, do things we’ve both dreamed about and make memories together. Two, parts of it will suck.

It’s hard to quantify what travel is like “now”. My husband explained it once to someone by asking about their worst vacation experience, and then saying  that would be an exceptionally good trip for us.

What I expect: I will, at some point, vomit on the side of the trail from either pain or medication or a combination of pain and medication. T will have to spend a recovery day (or three) with me in a hotel, rather than out adventuring (yes, it’s a verb in our house). I will miss some of our planned and guided activities and will ride along while T bikes/swims/kayaks.

I’m not saying that to complain. I’m ridiculously excited to travel with T and he’s fine with the expectations I’ve laid out above. It’s (almost) a non-issue because we’ve all learned to set our expectations to reality.

So why go, right? Why risk the pain and the drama and the difficulty?

If I’ve learned anything in the last few years, it’s the importance of holding on to the things that make me happiest and the importance of fighting to define my life on my own terms and by more than what I cannot do. It will always be easier to just stay home. It’s easier not to travel, not to write, not to see friends or support my kids or live a life beyond what it most comfortable. And over time, that is often my only choice. But the things I love-my friends, my family and the adventures we have together are worth fighting for, even if that means fighting through (too much) pain to do them a few times a year. More than that, traveling is where I am happiest, even if I’m physically uncomfortable. Grabbing my kid’s hand and jumping into the world, as best I can, reminds me of who I am, even if how I express that is different now.

And so we planned. We used guides and support staff, things we might never have done before, built in rest days and back-up plans for my back-up plans (including but not limited to several discussions with my doctor  and making sure that T understood what might happen so he could explain to somebody else if I couldn’t). I planned for the worst and hope for the best, as the saying goes. Good or had, it’s worth the effort for me to share the world with my son.

Wish us luck, good weather and amazing adventures.

 

 

 

Can We Have A Conversation about National Violence?

There are shootings in this country every day and mass shootings nearly that often. According to the Gun Violence Archive, there have been 137 mass shootings in the USA in 2017. 158 people are dead and scores more have been injured. That’s more than eleven times the number of people killed in San Bernardino and three times the people killed in the Pulse Nightclub attack. Those were horrific acts, and I’m not trying to belittle them. But I think it’s time to stop ignoring the fact that people are being shot on the street and in our schools by men with an underlying ideology of hatred.

 

Maybe it’s hard to quantify individual shootings since one hates Muslims and another hates women and another hates African-Americans and still another hates immigrants. But the root is the same. If an ideology of hatred is driving mass shootings and we can’t discuss them for what they are, an attempt to harm and frighten and subdue those who are different, than how do we work together to solve the problem?

 

Here’s What I’m Talking About

 

Nine people died at Umpqua Community College at the hand of a man who left a message stating his animosity towards women and organized religion. In La Isla, CA a shooter killed six and injured 14 after recording a “manifesto” that declared hatred for women, minorities and inter-racial couples. The slasher on the Portland Max last week began by attacking two women he believed were Muslim and spewing hate speech.

 

The reporting on the slasher on the Max is still emerging and there is (maybe, finally?) a push to call this what it is: domestic terrorism.

 

Read the reports on the other two shootings, and the storyline is eerily similar: A young (non-Muslim) man with mental illness has unfortunately shot multiple people. The same can be said for shootings across the country, every day.

I don’t understand why it’s terrorism if the perpetrator hates a country, but it’s “mental illness” if the perpetrator hates a sub-section of that country.

 

Actually, I do understand. We all do. And it’s so, so wrong.

 

It’s wrong to define terrorism by the race and religion of the person doing the shooting. It’s wrong to suggest that “there’s a difference” between acts carried out by Muslim extremists and those by white supremacists or non-Muslims, as Sean Duffy (R-WI) did in February. Or maybe it’s right. Depending on which news outlet you read, you are up to seven times more likely to be killed by a white supremacist than a Muslim attacker, but I’m fairly certain that wasn’t what Mr. Duffy was referring to.

 

As a woman and a mother, I’m not frightened that my daughter will fall victim to a terrorist attack. I am worried that she might be injured in a school shooting. I’m even more concerned that she will experience sexual violence, whether that is rape, harassment or a man deciding to hurt or yes, shoot her because she dares to assert her autonomy as a human being and turn down a date. I won’t teach my daughter how to avoid a terrorist attack. I will teach her, as best I can, how to navigate a world where violence against women is a daily occurrence. I don’t personally have children of color, but my understanding is that parents of color are teaching their children, as best they can, how to stay safe in world where hate crimes and prejudice and confrontation are rising.

 

Where Do We Go From Here?

 

We need a national discussion on violence, hate speech and domestic terrorism, its root causes and how we, individually and collectively, want to face this problem. We have an administration that ignores it, unless prodded for days to make an underwhelming Twitter statement. The CDC can’t even study gun violence, courtesy of whatever arcane and ridiculous rules stand in the way. Thanks to a gun lobby more concerned with arming its members than keeping children alive, current gun laws certainly aren’t curtailing mass shootings. And mental health services are limited and about to get more difficult to access, if the GOP has its way.

 

So it seems it’s up to us, the individuals who form this nation. I can only hope that we all respond as the men Portland did, with love and kindness and a desire to protect the vulnerable. If we, as a nation, could begin to discuss these daily shootings and attacks for what they are, violence and threats used to intimidate large groups of Americans, maybe we could change our national response. Maybe we could learn to support and protect those targeted. We could be a nation of millions standing up, not just to violent acts, but also to the attitudes and beliefs and hate speech that lead to violence.

 

 

What I Learned When My Daughter Chose Her Own Life Lessons

I’ve talked about my desire to teach my kids to have loud voices, to advocate for themselves and for others. Often, I’ve related that to the politics of the day. But really, kids learn to speak for themselves in smaller spaces, in family conversations and school hallways. So I’m taking a little bit of a left turn today to tell a story about my daughter, and what happened when everyone wanted her to learn (opposing) life lessons.

 

The Beginning, 2016

 

My daughter is a word nerd. She inhales books and discusses the best new releases with her equally wordy friends. So last year, when she was finally eligible for Battle of the Books, she was all in.

 

Battle of the Books is a nationwide competition put on by librarians in school districts everywhere. Teams of five students read twelve books, and answer detailed questions about the books in rounds of competitions. In my daughter’s district, fourth and fifth graders compete. Each school holds 2 months of school-wide competition. The winning team advances to a district final.

 

Battle of the Books, Fourth Grade

 

Last year, her team came in second in her school, missing districts by a point or two. Her team was full of great readers but a few of them argued over answers, and often had trouble agreeing.

 

I’m a huge advocate of kids learning from their own mistakes, and this was a perfect example. They squabbled during the school rounds and those arguments were the team’s downfall.

 

Lesson My Daughter Learned (I Thought): Sometimes, it’s important to put aside disagreements and work together towards a goal.

 

The team seemed to take that to heart. This year, four of the girls on the team came back, they added a fifth, revived the team name and started reading. They had extra meetings to make sure everyone knew their books. They talked out any confusion, and added a team requirement that each team member read 10-12 books, multiple times.

 

In the middle of the early rounds, my daughter told me she realized they were doing better because her team was all girls (they had one boy last year) and they all read more books.

 

Lessons Learned (According to My Daughter): First, work harder for what you want. Second, boys have cooties.

 

Battle of the Books, Fifth Grade

 

The school rounds continued this year, and her team was ahead every round. By the time it was down to two teams, it was clear they would win the school title and move on to finals.

 

That’s also the week her team realized that one of the girls would be out of town for districts. It was the beginning of the Battle of the Books drama.

 

How would they fill that spot? The girls picked their original team; could they simply pick a friend as a replacement? Would a new person agree to extra study sessions? Could they enforce the team requirement that the alternate read 10-12 books, multiple times?

 

The librarian laid down the replacement law: Any fifth grader who competed was eligible to enter a random drawing to take the alternate spot, if they had read a minimum of two books. In theory, it kept teams from replacing a weaker team member with a book-reading ringer, keeping it fair for everyone.

 

My daughter did not think it was fair. Her team did not think it was fair.

 

Battle of the Books, Alternate Ideas

 

That night, I suggested that daughter should clarify what she wanted. A teammate started a virtual team meeting. They decided to offer other ideas.

 

They explained to the librarian that they wanted a teammate they could work with. They wanted a girl-power team. Mostly, they wanted someone who met the unofficial team qualifications, or no one at all. They wanted to compete as a team of four.

 

Lesson I Wanted My Daughter to Learn: When you think a rule is unfair, work to change it.

 

The librarian listened and understood their concerns. She felt bad that it came down to a random draw. But she also told them that she had to consider teams from other schools and how a change would alter the future of the competition. The original plan stood. She told them it was a life lesson.

 

Lessons The Librarian Wanted The Team to Learn: Sometimes, the best plans change, requiring flexibility. It’s important to show grace and acceptance in the face of unexpected adversity.

 

Initially, we thought that was the end of it. We were wrong.

 

Battle of the Books, The Hurricane

 

The night before the draw, the girls started an email campaign to all the librarians in the school district, asking for a change in how the alternate was chosen. One girl sent an email filled with emojis. Another singed hers “with good wishes.” The first librarian responded with support. The second suggested better sportsmanship.

 

The girls stood their ground. They asked the parents to get involved. They met with the principal. Emails and texts flew between the team, the schools and the parents.

 

After a whirlwind morning, the girls got the news: They could choose to compete as a team of four, or take the randomly drawn alternate, their choice. They huddled to make their decision.

 

They took the alternate.

 

Wait, what?

 

Lessons I Wanted My Daughter to Learn (Part Two): Persistence pays off, and it’s both OK and important to stand your ground.

 

Persistence pays off….and here they were, accepting the original plan, the one they hated and fought against and started a virtual cyclone over. I was so confused.

 

That afternoon I asked my daughter what had happened? What changed their minds?

 

Once the decision was in their hands, having another team member didn’t seem so bad. They all agreed, she said. They wanted another kid to have the chance to be excited about going to districts as well.

 

Lesson Learned (According to My Daughter): Autonomy matters. To quote my daughter directly: “It’s important to be able to make your own decisions, not have somebody decide things for you.”

 

As for me, I realized that autonomy does matter. My daughter was right. It is important for her to learn her own lessons, even if it’s not the lesson I would choose. Whether you are an adult on the wild ride that is parenthood or a tween learning independence, sometimes life lessons come packaged in ways you don’t expect.

Dear Mo Brooks: Do I Lead A Bad Life?

Dear Mr. Brooks,

I have a pre-existing condition, so I guess I lead a bad life.

You know what’s really bad? Going in for surgery and coming out with nerve and organ damage is bad. Losing my health in two hours. That was a bad day.

I usually keep this part quiet, but since you seem to have strong opinions about good and bad, I’ll tell you. I had surgery to fix damage from childbirth with my two kids. I guess if I hadn’t had children, I wouldn’t have needed the surgery that gave me the pre-existing condition. But then I would have either been a woman who had an abortion or a woman who (gasp!) chose not to have kids, and I’m going to guess both of those things would have landed a check in your “bad” column as well.

Let me tell you a little about my life before my pre-existing condition, back when it was a good one.

I ran a lot, including marathons. I loved vegetables, except kale, because, who really loves kale? I took my tiny kids on walks and hikes. We swam a lot.

I was a Physical Therapist. My whole career revolved around helping people stay healthy, so they could live good, fulfilling lives too. You’re an older guy; maybe you’ve seen someone like me to help you rehab an injury? Most people have by your age, which means they have pre-existing conditions too. If you haven’t, maybe you can ask Chaffetz about it; he’s going to need some PT for that foot.

Here’s the thing: All the salads and good living in the world didn’t change my outcome or my story. It took a brief moment under anesthetic for my life to go from a good one to a bad one, by your definition.

Newsflash, you bigoted old fool: I live a good life with a pre-existing condition and a disability. Getting to the point I could call it a good life was hard as hell, and I’ll miss my old life for the rest of my new one. That doesn’t make my life less valuable now. The things I had to learn along the way, like patience and compassion and humility might just make my life better. I’m guessing you don’t understand that.

So let’s talk a little about my life now. Let’s talk about why I think it’s a good one and what you really mean by a bad life.

First, I love my family. My husband I are raising two whip-smart, kind, empathetic kids. We’ve instilled the idea of “do unto others as you would have done to you.” Those are checks in your “good life” column, right?

They think you’re an ass. Also, we’re agnostic, so we skipped the Bible verses and told them to be good people who care about others. That’s probably two checks in your “bad” column, right?

I’m pro-choice but I’m also pro-child. While I’d like abortion to be legal, safe and rare, I care more that the children who are born have food and shelter and healthcare. Even if, like my daughter, they are born with a pre-existing condition and spend some nights in Children’s Hospital before their first birthday.

I still exercise as much as I can and I still like vegetables. All the healthy living in the world won’t make me less dependent on the medical supplies that keep me alive. Your falsely moralistic statement that good things happen to good people, including health, is so far-fetched that it would be comical if you didn’t have a vote in shaping healthcare policy. That vote makes your statement terrifying and cruel.

Here’s the thing you need to know about those of us with pre-existing conditions, especially people like me whose health changed their lives.

We’ve learned two things. The first is compassion. You can’t have life deal you such a resounding blow without understanding that anyone can be the next victim of cancer or MS or a surgical complication, and that living a good life has nothing to do with it. The second thing we’ve learned it how to fight. It takes ridiculous amounts of time and energy and persistence to fight for the services and medical supplies we need and often we have to fight despite poor odds, because we want to stay alive.

We have compassion and commitment to a fight. If anyone is ready to fight for healthcare for the next three years and nine months, it’s us.

And we’re tired of your bullying moral superiority. Health and good luck alone don’t make a good life. Too bad you lack compassion and the courage to fight for anyone other than yourself. That seems like a bad life.

Hidden Trials: Parenting with a Disability

True confession: I am writing this post from my couch, in my PJs at not-very-late-in-the-day o’clock. I am highly medicated.

I’ve been loath to write about parenting with a health condition. It’s personal. It’s scary. It’s my biggest success and greatest failure. It’s one thing to change my life but another for my health to dictate my kids’ lives. I tried to keep those things separate, but the harder I tried the more they collided.

I finally embraced the changes that sprung from my disability. It’s not all good…but it’s not all bad either.

First The Good

My health saga began in 2011 with a simple surgery. My son was six and my daughter was five. Up until that point, I planned to model a balance between work, family and fun. Overnight, I went from being fiercely independent to struggling with basic function. Some days, I helped with homework and went to soccer games. Other days, I didn’t make it out of the house or off the couch. And occasionally I ended up on the side of the road throwing up with the kids buckled into the back seat.

If you’d asked me six years ago if my kids would be better people for my struggles, I would have laughed, then cried.

Then I started paying attention.

When I was sick, my daughter brought me stuffed animals. My son hugged and kissed me. And they never complained about missing things because I couldn’t get them there.

My kids aren’t perfect. In the last six years, they’ve been known to argue about bedtime, rules and where they should be allowed to go. But they rarely say anything beyond “I hope you feel better” if I have to miss a school function or a game, or they do.

When my kids were born, I worried about teaching them empathy and compassion, about instilling the idea that everyone is facing his or her own challenges. They live those challenges first hand. They understand that private struggles occur behind public smiles. They are more caring and open and empathetic than I was, even seven years ago.

Then The Bad, or at Least The Different

My kids will never remember me the way I see myself. They won’t remember the woman of their first years-someone with boundless energy, in constant motion. They see glimpses. I still love the outdoors and I think I’ve passed that on to them. They know I love new experiences; they don’t know that the pace of discovery has changed. They don’t know that considering medications, medical supplies and care limits our adventures.

While I’ve worked hard on acceptance over the last few years, I worry that my kids will confuse acceptance with complacency, mistaking my inability to do some things with my desire to do them. They won’t remember my career. My health has forced conversations about their place in the world. We talk often about following dreams, setting goals and working hard. For better or worse, my kids know I didn’t choose this exact path, but I’m trying to make my own best life. I’m still terrified that actions speak louder than words and that my kids, particularly my daughter, will limit their own options because I had to limit mine.

Rather than independence, we focus on interdependence and gratitude. Over time, my family, friends and community became the sweet to my life’s bitter. My kids have learned firsthand that life is better when we all help each other. Even though I miss my feisty independence, this journey taught us to give and receive help with grace.

And Finally, The Ugly

I want to ignore this section, but that would be such a lie. The fact is, my kids see me at my worst. They see me in pain, unable to move or to talk, unable to stand or write or function for hours (and sometimes days) at a time. I wish it were different. They wish it were different. But we’ve all learned to embrace the good and wait out the bad.

It’s not perfect, or even perfectly imperfect, as the saying goes. But it’s real. I choose to hope and believe that instead of instilling fiery independence, I’m teaching quiet strength and resilience.