one small corner of the universe

Originally published March 30, 2017 in response to the last attack on American healthcare and the Syrian refugee crisis. 

Last week as I absentmindedly scrolled through Facebook the way we do, I saw a story on Scary Mommy called “What if it Were My Baby? The Importance of Putting Ourselves in Another Mother’s Shoes.” I skipped it, then went back. Hovered over the link. Hesitated. Clicked.

Here is the truth about me: I mostly don’t want to know about a lot of things. I don’t want to join Facebook groups where the focus is a child or young mom of three who is dying of some freak illness or struggling to survive a terrible accident. I can’t watch videos of a tiny boy rescuing his brother from being crushed to death under a fallen dresser. I avoid photos and video footage of refugee children in makeshift hospitals covered in dust and blood. I even hide posts from friends and acquaintances on social media that discuss their encounters with the flu, stomach bug, and other random sickness. I am mostly not proud of any of this. Well, except for that last one. I feel like we can all agree there’s too much public talk of mucus and vomit these days. Let’s stop that, shall we?

But I digress.

I didn’t want to read that essay after the first sentence. I took a deep breath and read it anyway. It was about a photo of a dead Syrian toddler who washed up on the shores of a Greek island after his family and several others attempted to escape their present hell for some semblance of a safer life. They weren’t even looking for better at that point–just not being bombed. You may have seen the picture–it was hard to miss, even for me, the serial avoider, as it made its rounds on social media back in 2015. And if you paused for even a hot second, you may have had the same reaction I did, same as the author of the essay I read last week: he could be my own son, with his little crewneck tee and his clunky shoes, the soles worn out from running everywhere, and his tiny starfish fingers spread wide open as if reaching out for someone’s hand.

What if that were my baby?

Of course, this is the very reason I don’t want to know. Because “What if that were my baby (or daughter or husband or mother or friend, etc.)?” is my immediate reaction to most things. My husband hates this game my mind plays with me, the one where I automatically transpose an illness or horrific event or even a minor cold virus onto someone I love. He hates it because the resulting anxiety is right up there with the anxiety I experience when something bad actually happens. He tells me to focus on what is true and real: our kids are healthy, we are safe, crisis and catastrophe are unlikely. He tells me I am wasting energy and time thinking about things that might, or even remotely could, happen. And he is mostly right. But that’s because I’ve been doing it wrong. I have, in most of these moments, chosen fear over empathy. One can move mountains. The other is a mountain that is difficult to move past.

Not too long ago a friend of ours posted this on her Facebook page on the day of her daughter’s 11th birthday: “Her birthdays aren’t just birthdays,” she said. “They are also a celebration of a battle that we haven’t lost. My tears today aren’t because my baby is growing up too fast; my tears are relief from a heavy burden. It is hard to admit this, but there was a time in my life that I was sure I’d never see her 11th birthday. I feel like the luckiest, most grateful mom on the planet. I have had the chance to know a kind-hearted, resilient, hard-working, clever girl because she has not been taken from me.”

I teared up on and off most of that day every time I thought those raw, honest words, and about that spunky 11 year-old. She and my daughter were on the same soccer team last year. She is tiny but fierce, one of the most tenacious and field-smart athletes I’ve ever watched play the beautiful game. She is fast and tough and hardworking. She also has Cystic Fibrosis–but if you watched her in action, you’d only know that because I told you so. I only knew it because a year before the girls met on the pitch, my husband and I signed up for a local 5K that happened to be organized by her family as a CF fundraiser. When our paths crossed a year later I was amazed by the ease with which this kid showed up for her life–at least from my limited point of view.

It was only after her mom and I became Facebook official that I caught a glimpse of the parts of her story we don’t see on the soccer sidelines: breathing treatments, daily PT, handfuls of medications and supplements, clinical trials, hospital visits and doctor’s appointments. In recent months, a trial drug she’s been using has proven effective in bettering her condition, but in these tumultuous political times her parents’ FB posts are often about the steady crumbling of healthcare in America and how it will impact their child. There is no cure for CF–yet–but there are means of maintenance, and they are time-consuming, and probably beyond exhausting for everyone involved–and they cost a lot of money. Even knowing all of that, I really know nothing, because right now I have chronically healthy children, reliable workplace-provided health insurance coverage, and no current need for supplemental healthcare. In the end it’s all about privilege.

If you’re thinking you might stop reading now, because I’m about to make some sort of political statement–well, you’re right, I might, and I beg you not to close this window. Sit here for a few more minutes and think about these words: What if it were your baby?

I have walked a tenuous line between fear and compassion since this country’s recent election–longer, if I’m being honest. I sit in church every Sunday and listen to my pastor urge me to be more like Jesus, a noble aspiration and one we can probably all agree about regardless of our religious or political leanings. Jesus was goodness personified. He got all up in people’s heartache and tragedy and loved them like sisters and brothers and best friends. He fixed brokenness, and he didn’t stop to assess the worthiness or ethnicity or background of the broken beforehand, nor did he have any concern for his own safety. He turned over tables and shouted in the synagogues on behalf of what was good and right. He urged us to do the same. Even said it would be our calling card: By your love you will be recognized, he insisted. I take this in, and I feel an almost primal need rise up in me, this urge to do something, to make something better for someone outside my safe circle. But then I look out at a world that is so shattered, and I feel afraid, and so extraordinarily helpless, and most of all, overwhelmingly protective of my family, and I quietly go on about my life. I can do this because of my privilege.

I have no real idea what it is like to imagine my child’s demise at the hands of an incurable disease. I have no idea how it feels to wonder if I’ll be able to afford the medication, equipment, therapy, and appointments that are required to keep my daughter alive. I am not familiar with the reality of coverage loss because of the dissolution of the ACA, or the threat of a “lifetime cap,” or cuts in funding for research-based organizations whose mission it is to improve my kid’s quality and quantity of life. I do not struggle to sleep at night for fear that someone might bomb my neighborhood and harm my family. I’m not concerned that my children might get shot playing in my front yard, and the idea of escaping my homeland for safer ground has never occurred to me. I don’t worry about where our next meal will come from, or if there will be a meal at all. Letting my daughter walk into our corner store to buy a Gatorade and some M&Ms while wearing her soccer hoodie pulled up over her head is no big deal to me, and if either of my kids does get sick, I don’t think twice about whether we can afford to take them to the doctor or purchase medicine to make them well. Health, safety, financial security, food on the table and more in the pantry: all of these are privileges not everyone enjoys. I am privileged. 

But what if I weren’t? What if my story suddenly changes? What if that were my baby?

I’m starting to think fear and helplessness are just exaggerated forms of complacency, and they are all born of privilege. We all have various kinds of privilege, but yours may not look like mine, and mine may not look like theirs, and no one’s looks quite like that of the people who call most of the shots in our government–but privilege is privilege. It gives you blinders. It makes you ambivalent. It causes you to seem like an asshole sometimes, even when you really and truly aren’t one. Privilege is what makes ordinarily good, kind people say hateful things about gun and healthcare reform, women’s marches and refugee ban protests, pro-choice supporters and gender pay gap opposers, LGBQT rights and tax breaks. Privilege turns us into a dog who only barks when he’s inconvenienced: don’t disturb his nap in the sun, or else be sure to give him a juicy treat, and he’ll let you pass without protest. But threaten his comfort and you’d better start backing slowly away.

You may be thinking this most certainly does not apply to you, but it does. It’s not a criticism, really. It’s just a reality, and we are all guilty regardless of party affiliation. If you scoff at issues someone is crying out about, it’s because they aren’t your issues. You have the benefit of some privilege that makes that issue invisible to you. For example, if you think blacks, Muslims, or Jews are just being dramatic and couldn’t possibly be facing abject discrimination in this day and age, you are most likely not black, Muslim, or Jewish. If you think there is no gender inequality in America’s workplace, or that women in this country have nothing to protest in general, you’ve probably never faced unpaid maternity leave (my “baby” is almost 3, and I still have no accumulated sick days, because I chose 8 weeks at home with him over a paycheck and used every sick day and vacation day to my name), or had a supervisor say to you, “I probably shouldn’t have hired you, knowing that you were a single mom with a toddler” (TRUE STORY!). If you roll your eyes at gun law reform, perhaps your community has never experienced a deadly school shooting at the hands of a mentally unstable shooter who purchased a gun at a local gun show. If you can’t foresee any reason, ever, for a medically necessary abortion, and you condemn any woman who has one, perhaps you’ve never had a doctor avert his eyes and tell you that a full term pregnancy for a child you’re carrying is likely to cause you, or the child, or that child’s twin, harm or death, and then leave the room so you can decide whose life to gamble. If you think the Affordable Care Act (also known as ObamaCare) has to go, perhaps you have no financial strains or preexisting conditions that prevent you from having, well, affordable care.

But here’s the thing: what if one of these things becomes your issue? What if your story suddenly involved some life-altering plot twist? Would you suddenly hope everyone jumped on board to help you? Sure, your child cannot come down with Cystic Fibrosis, but what if your kid gets cancer, or sustains some sort of permanent injury, or desperately needs a trial drug to keep her congenital condition from worsening–and your insurance fails you? What if our nation goes to war and we have to face the reality mothers and fathers face every single day around the world? What if, for whatever reason–because you’re a Christian, or because you’re a southerner, or because your eyes or skin tone are the wrong shade–someone violates some right of yours? There are no guarantees, so we could fall from our privilege at any moment, and then what? Will we be frozen with fear? Or will we have practiced enough love and compassion to move through our own suffering with purpose? Even if we find ourselves praising God at the end of our days for a lifetime of good health, strong, able children, a relatively crisis-free existence, what will we have taught those children if we turned a blind eye to the pain of others?

What if that were your baby?

I look at the photo of the dead boy again. His name was Alan.

I think of my friend’s daughter, fighting the good fight against CF every single minute of her life. Her name is Isla.

I think about my own kids. Mia. Hayden. What kind of people do I want them to be? Healthy and safe, yes. I pray for it every day, sometimes hourly when I am feeling particularly anxious. But I also want them to be compassionate, open-minded, and fiercely passionate about loving people and bettering the world outside their own worn paths. And I cannot depend solely on my church or their teachers or anyone else, really, to show them what that looks like. They will have to learn it from their father, and from me, and that means I will have to figure out how to do it myself. I will have to learn how to choose compassion over fear.   

And that choice begins with knowing. We cannot love and care for what we do not know. The more we arm ourselves with the stories of the hurting and broken–those who are lacking our particular privileges–the more capable we become of helping others. We have to stop scrolling past what is painful and actually read the stories that are as much a part of our world as the ones we are living, because they could easily become our stories. We have to speak the names of these children–the dead and the displaced and the sick–not just during the prayer over our family dinner each night, but out loud to senators and congressmen and lawmakers whose votes will determine their future. We have to show up for each other, not just so someone might someday show up for us, and not just so our kids will know what showing up looks like, but mostly, especially, because it’s the right thing to do.

Mother Teresa once said, “I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” Let the ripple you create start with someone’s story–the lines upon a million faces that tell you the story of who they are and where they’ve been (regards to Brandi Carlile). You don’t have to go far to find a story that needs telling, but maybe, like me, you have to shed your armor of fear in order to truly hear, to sit silently and understand, to look into the eyes of someone who does not share your privilege. Listen to it. Retell it. Make it part of your own story. Never stop asking yourself, “what if that was my baby?”

 

Here’s a place to start: call your elected officials. Call them every day. Tell them many countries have long figured out how to make healthcare affordable and beneficial for ALL their residents, and if we truly are a great nation, we would do well to do the same.

Here’s a script if you’re awkward like me and have no idea what to say. Look up your elected officials here and also here, and insert their names. Give them hell. Do it for Isla, and for every child in this country who deserves more than this shitshow of a healthcare bill.

Hi, I’m a constituent and my name is _____. I’m calling because I want Senator _____ to oppose the Graham-Cassidy bill. Like millions of others, I rely on the ACA to keep health care affordable, and repealing it puts me at risk. I want Senator _____ to vote against the Graham-Cassidy bill that’s currently before Congress.

Finally, don’t stop with healthcare. Once you’ve made this call, the rest are easier. Make one a day, even one each week. There are issues galore, and all our voices matter. Visit this call to action guide for more information.