My older daughter is away at college, so for the first time in her life, my younger daughter has me and her father to herself.
Well, only sort of the first time in her life.
When Sammi was born, a series of strange goings-on in her chest (trachea, voice box, lungs, esophagus) found her alone with us a lot — in hospitals, doctors’ offices, therapy practices, and in the car en route to and from all of these places. There was a lot of buckling her backwards into her car seat, for YEARS, tiny as she was, and driving her to this medical appointment and that one. We listened to a lot of Lori Berkner music when she was tiny, then recordings of Helen Lester’s book ME FIRST and Dr. Seuss’s THE LORAX and several other books that I could have recited for you at the time but now are just blips of memory, the oatmeal-colored cassette tapes rattling around in the tape deck of our manual-transmission Honda Accord.
We sat in all those appointments with a diaper bag — and then a tote bag — of coloring books and picture books and small toys, playing “I Spy” and running our index fingers over crowded pages in search of Waldo. We talked with her, distractedly, one of us sometimes jotting down notes and reminders of what we wanted to ask the doctor or what instructions we needed to get from the nurse. We were with her — we were ALWAYS with her — but sometimes I look back on those years and think that we were with her body but not really with HER. Continue Reading…
I’m trying to teach my daughter to drive, but there’s nowhere to go. We order our groceries online for delivery, prescriptions come with a three-month supply, and school is taking place in our basement on a laptop. Where to drive?
But I’m doing it anyway, the same way I browsed grocery stores all gaggle-eyed and hopeful when our family followed the six-food-elimination diet for eosinophilic esophagitis ten years ago. My daughter was misdiagnosed, it turned out, but we didn’t know that as we ate food without dairy, soy, eggs, nuts and wheat. I pushed my cart around the store aimlessly, hoping for a surprise. Maybe, I thought, this brand will have discovered a secret combination of ingredients that tastes like what I remember, for once.
Sometimes, that surprise DID come. I found that Fruity Pebbles, that horrible day-glo cereal my husband loved that made my throat hurt from the intensity of the sugar, fit the diet perfectly. I brought it home like a trophy, drizzled it with rice milk, ate it with a big fake smile on my face. Continue Reading…
I’ve dedicated this blog to telling my family’s story about misdiagnosis and healing within the American health care system. It’s been a cathartic way to process my grief over what happened over nine years to my daughter, Sammi.
Today, you won’t read anything about that here.
I had a significant advantage all those years: I am a white woman. I was more likely to have health insurance (which I did, for me and for my family); I was more likely to be listened to (sometimes, I was!); I did not interact with doctors from a position of deficit in a system that is implicitly and sometimes explicitly devaluing my life and the life of my child. So today, I’m going to share some links to articles about what it is like to operate within that system for Black people.
“An algorithm widely used in US hospitals to allocate health care to patients has been systematically discriminating against black people, a sweeping analysis has found…. the algorithm was less likely to refer black people than white people who were equally sick to programmes that aim to improve care for patients with complex medical needs. Hospitals and insurers use the algorithm and others like it to help manage care for about 200 million people in the United States each year.”
“…one study of 400 hospitals in the United States showed that black patients with heart disease received older, cheaper, and more conservative treatments than their white counterparts. Black patients were less likely to receive coronary bypass operations and angiography. After surgery, they are discharged earlier from the hospital than white patients—at a stage when discharge is inappropriate. The same goes for other illnesses.”
“A 2010 study from the American College of Cardiology found that only 3% of practicing cardiologists in the United States are Black. Having a Black doctor increased Boucicaut’s confidence in her treatment plan. ‘The doctor said he’d treated many people my age — mainly Black men — who had the same heart condition,’ she says. ‘That gave me comfort.’ Kalinowski shared a similar sentiment. “It is extremely crucial… to increase the pipeline of Black women and men who are addressing these issues,” she says. ‘We need to continue to invest in the diversity of researchers and providers who are researching these issues and committed to seeing these data turn.'”
“If there is no physiological explanation for differing treatment of the same phenomena, we are left with the notion that subtle biases, implicit and explicit, conscious and unconscious, influence the clinician’s judgment…”
“Researchers at the University of Virginia quizzed white medical students and residents to see how many believed inaccurate and at times ‘fantastical’ differences about the two races — for example, that blacks have less sensitive nerve endings than whites or that black people’s blood coagulates more quickly. They found that fully half thought at least one of the false statements presented was possibly, probably or definitely true.
“Moreover, those who held false beliefs often rated black patients’ pain as lower than that of white patients and made less appropriate recommendations about how they should be treated.”
“For many public health experts, the reasons behind the disparities are not difficult to explain, the result of longstanding structural inequalities. At a time when the authorities have advocated staying home as the best way to avoid the virus, black Americans disproportionately belong to part of the work force that does not have the luxury of working from home, experts said. That places them at high risk for contracting the highly infectious disease in transit or at work.”
Though this blog focuses mostly on health care, it’s important to understand not only the extreme challenges in attaining quality medical attention as a Black person, but on the overall racist and structures that form the base for American society. There are many lists of articles and books you can read to educate yourself. This week, I also listened to several podcasts that formed a good introduction to this important consciousness-raising decent white people must undertake:
She was born fourteen years, six months, and thirty days ago, right on her due date, after a quick and powerful birth with most of the labor at home. She was 7 lbs 8 oz, two pounds heavier than her older sister, but we marveled at the similarities — her thick, curly black hair, her deep blue eyes, the slight jaundice that kept her under bilirubin lights for a day or two.
She came home and we all fell in love with her immediately. Her extra two pounds made sleep and nursing and everything so much easier, and it was like a dream compared to her sister’s nightmarish infancy. Like her sister, she was healthy and hearty, and in photos of the two of them at one month, two months, three months, they were impossible to tell apart. Until she got old enough for her eyes to turn the same dark brown as my mother, with long gorgeous eyelashes, they could have been the same baby.
At 12 weeks, I went back to work, photos of my two dark curly girls on my desk, side by side, baby and preschooler, carbon copies. Every few hours, I locked the door and pumped. Every night, I picked them up from daycare and buried my face into their necks that smelled like the daycare’s baby wipes, and we went home and ate takeout or macaroni and cheese and peas, with the baby gleefully nursing and then, eventually, eating jarred sweet potatoes and carrots and bananas and spinach. I felt a twinge of guilt — should I be making baby food? it doesn’t take that long… — but instead, we sat on the living room floor and cheered as the baby crawled between us, filling our time with each other.
I could have applied to graduate school, like I’d planned, but work was going well, so well that I thought I’d give it another year, not shake things up until the baby was two, or maybe three. I got a raise. “I can’t believe how well you’re doing,” my boss told me. “I was a wreck when I had my second baby!”
I spent Valentine’s Day at O’Hare Airport, mostly.
That’s the punch line, but the lead-up is that my husband David — my organized, thoughtful, careful, good-planning husband — usually does everything logistical for our travel. He always has. There are these clear, colored plastic file folders into which he has, for at least the last couple of decades, placed copies of our boarding passes and hotel reservations, photocopies of our passports, printouts of hotel reservations, lists of things to do. They have neat notes in the margins, sometimes (“spoke with Marla at the front desk, they will have a Pack-n-Play ready, 7/16). I used to get frustrated that it seemed like this was the only thing he ever did when it came to our travel — I packed up the kids, canceled the mail, used up the milk in the fridge, made sure we had sunscreen, and on and on, a mountainous pile of tasks, while he sat in his office printing things — but the truth is that his jobs meant we would always get there and always had a place to stay and (usually) appropriate beds for everyone. Continue Reading…