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 put on clothes before I go downstairs every morning. It’s a new rule, in my head, a ward against a world in which so many have switched to sweatpants and pajamas all day and in which I know I would roll slowly down into deep sadness if I didn’t put on real clothes. Pants, top, bra. Deodorant. Brush hair and teeth. Deep, deep drags on the morning inhaler as my city fills with the bored smoke of too many fireworks celebrating nothing. The path from the bed to the closet to the bathroom is the first trip I take every day, moving from another-day-like-yesterday to maybe-this-shirt-will-make-me-feel-better.
If the clothes I’ve put on are running clothes because the air quality has passed muster outside, the path down the stairs to the back foyer is next. Sneakers. Little stretchy pouch for my inhaler and my key and, now, for a mask I sometimes pull out and clutch in my hand as I trod past Lake Michigan, making ten-foot arcs around septuagenarians walking in pairs. Go too far north and the path is clogged with people, forcing my mask over my face, so I go west, past the shoe store and the shuttered bakery and the tiny nail spas that can’t be doing well. Past the rose garden, past the funny goose statue they dress in giant bows and rainbow capes. I come back to my yard, panting, and sit at the picnic table to upload photos of flowers and waves to Instagram. All my photos are of flowers and waves and food, all the miracles I pin there to remind myself that they exist, still, even among all of this. Continue Reading…
In the third week of my state’s stay-at-home order, a friend asked me to teach her to make challah via Zoom.
Challah, the traditional braided bread that Jews eat on the Sabbath and on most holidays, isn’t a complicated recipe. It’s not hard to make, as breads go, with most recipes using just flour, water, yeast, sugar, salt and oil. My mother made challah regularly, long braids during most of the year and round loafs for the High Holidays in the fall to symbolize the unbroken circle of life. When I was a little girl — ok, even for most of my adulthood — I knew challah to have only two varieties: plain or full of raisins.
I made my mother’s recipe for years, but when my daughters were just 5 and 2, I offered to host the Friday night Sabbath meal before my brother’s wedding, and I decided to make my friend Hilary’s challah. You can watch me tell the story of this very important challah here, but suffice it to say that the way I received this recipe — over email, just before she went to bed on the other side of the world — was dramatic and exciting and forced me, for one of the first times in my life, to improvise, guessing at the number of eggs I should use. My mother and I — who had never made a challah with no eggs — peered over the edge of the bowl after adding one egg, then another, and finally a third one, declaring this to be our best guess. The challahs rose in a warm oven, were rubbed with whisked egg and sprinkled with sesame seeds, and baked into the kind of loaves you see on the cover of Jewish cookbooks. They were gorgeous — chewy and sweet, delicious ripped in chunks from the loaf or sliced perfectly and slathered.
I made that recipe for years and years. I brought it to the Yom Kippur break-the-fast gathering to which we were invited for years, all to cheers from the other guests who remembered it from the years before. “Debi’s challah is amazing,” the hosts told everyone, and I glowed and beamed even while demurring. “It’s my friend Hilary’s, really,” I’d say. “Well, Hilary’s plus three eggs.” 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: