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.