To protect the privacy of my family, I have to be vague, for which I hope you will forgive me. I’ve always been very open about the heartache of my daughter Sammi’s first eight years: the confusion and the instinct I had to push through it, the fear I had about her breathing and eating, the confidence I somehow found inside me to urge all of us forward to a real resolution to her challenges. As much as was age-appropriate, I have always asked Sammi what she felt comfortable sharing through this blog and through other writing. She wants the world to gain something from her journey, as do I.
But this last month, the heartache and the excruciating journey have belonged to my parents, and it has been dramatic, painful, and frightening on a physical level for them and on an emotional and spiritual level for all of us. It kept me away from home for most of the month, away from my husband and daughters and a million miles outside my comfort zone. It did not and cannot end well, but that is all I can say about it without betraying their privacy. Continue Reading…
Many years ago, on a family vacation, we were playing a charades-like game. Our girls were young — maybe 11 and 8, or maybe younger — and I was paired with my younger daughter, Sammi. She is the “sunshine” for whom this blog is named, and at that age was a funny, silly little girl who laughed and made us laugh all the time. The word I was trying to act out was “crumbs.”
First, I mimed eating a big cookie. “EATING!” she shouted. “COOKIES! SANDWICH! MUFFIN!”
I shook my head and held one finger up with my eyebrows raised, willing her to wait. Then I pretended to notice something on my shirt. I looked down, pinched an imaginary speck of food off my shirt and put it in my other hand, pointing to it.
“CHOCOLATE CHIP?” Sammi yelled, bouncing up and down.
I shook my head again, taking another imaginary bite out of my imaginary cookie, then pretended to drop some of it on the table in front of me. I mimed wiping my fingers on my shirt to brush off all the particles of cookie, then pointed at the table.
Sammi paused, her eyes squinting as she thought about it. “FOOD LINT?” she suggested. Continue Reading…
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: