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So much churns and rises to the surface during the night. A few days ago, I sat with my coffee and journal as I do most mornings, trying to capture my waking thoughts. As usual, only after my inner compass steadied could I turn my gaze to the headlines and other people's stories. Though I am enamored with the world, I don't know what magnets may swing too near my needle as I sleep so nearly every morning I do this scan of my inner horizon, as if it's an object on my nightstand, to ensure true north is where I left it the night before. If I can engage the first half hour of the morning with my pen steadied over the page, I rein in some otherwise missed understanding of the world. I write, listen to the hum of the refrigerator or the chatter of finches across the street, and sip my coffee. Sometimes, when there's little to sort out, I just write about the refrigerator and the finch. I aim for at least three pages of anything, and no matter what I write, mornings like that start out well.
The break of a new year is much the same. As one year's clepsammia thins, I hold my inner compass to the events of the previous twelve months. How does my living measure with the map I envision for my life? Have I lived aligned with my values? When the hourglass inverts, I face the future and envision how to rebalance lopsidedness from the previous year and further build on past progress. As I began to write my way across the transition from 2017 into 2018, though, I noticed a distinctly uncommon wobble in my journaling. My compass seemed to be spinning. When I asked What did I do with my time? I felt unmoored, and then understood: The November before, not to over-play a broken record, had named the loser of the popular vote the winner of our last presidential election. Though I believe people can change, I don't think Trump will, and I didn't buy some commentators' hopes that his election season manner would temper after his swearing in. Instead, the weight of all the injustices ever wrought against women -- the silencing, the harassing, the violence, the unfair narratives, the pay gap -- pushed at my back and pummeled me through the gates of that new year. I had crossed threshold with a heady mix of anger, fear of the unknown, and a whopper of an election hangover. Between the election of '16 and the swearing in last January, with my usual New Year's reckoning, I somberly acknowledged that the creative and professional plans I had thought would be my focus of 2017 had been based on an election outcome much different from what came to pass. Instead, I saw, 2017 would be not a year of embarking on new journeys, but on rehashing tired arguments for why, dammit, women need access to reproductive care; why, dammit, people for whom skin color has been the primary correlating factor for economic disparity should benefit from affirmative action; why gender expression or sexual orientation should make no damn difference when it comes to employment, military service, marriage, bathroom access, safety, or equal rights of any kind; why health care, particularly for the very old and very young and very sick and very poor -- and every child, like ours, with Type 1 Diabetes -- should be, in every civilized and wealthy society, guaranteed, accessible, and affordable; why we must be aggressive and progressive against industries that exacerbate climate change; why we must be diplomatic in our foreign relations; why we must encourage and support advancements in science, the arts, and education; and why, dammit, the individuals we choose as representatives should represent us at our best, not just for political reasons, but because, for god's sake, the children are listening. This week, as I tried to clarify my retrospective of 2017 in order to create my vision for 2018, I saw too well that the past year, instead of moving forward, had been spent going back over the leaks in the boat we'd already built and had thought was airtight. That was the wobble. It came from the gravitas and boredom of battles re-waged. It came from tamping down celebrations; pulling back recording projects; setting aside money for the ACLU and NARAL and other organizations with other letter combinations; and delaying creation of new books in order to have time to consume more articles analyzing what had caused this great ship to dip, and how to simultaneously bail out the water and repair the leak before we all go down. You many think I'm being overly dramatic, but that's part of what I love about you and me: we are not identically the same in our passions. And sometimes we are. Still, the point is that 2017 has ended. To honor it, Darby and I chilled a bottle of prosecco and holed up in his recording studio to reclaim what was left of the new year. We staked out the final hours and marked them as our own, getting back to making music and writing stories. We finished the year like that, never getting to the Prosecco, and woke up on January 1 to continue our work, which is on the Bliss Drops record that we first started over a year ago. Never mind the past. Through this New Years Eve and Day, we picked up where we left off before the election fiasco of 2016, with what is called "the Guru mantra," a Sanskrit chant that I've put to melody and chords, and which Darby has dressed up in groove. Gu = darkness. Ru = remover. Seems a fitting way to start anew: removing the darkness to bring in clarity, truth, healing, and joy. "By reciting this mantra with a sincere heart," activist, musician, writer, and yoga teacher Sharon Gannon writes, "you will see that the power that enlightens is all around you at all times. [...] The guru is your own self, the inner guiding light." To you, dear reader, I wish a very happy 2018, filled with love, joy, good health, creative inspiration, and the light of truth so that you may see more clearly in the darkness. Guru Brahma, Guru Vishnu, Guru devo Maheshwara, Guru sakshat, param Brahma, tasmai shri guravay namaha Brahma is the force, or guru, of creation; Vishnu, that of preservation; devo Maheshwara is behind the trials that transform us. There is a remover of darkness nearby (Guru Sakshat) and one beyond the beyond (param Brahma). I make my offering (tasmai) to the beautiful (shri) remover of my darkness, my own ignorance; I honor that guru with my life (namaha).
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Type 1 Diabetes is an autoimmune disease, genetically associated with other diseases in that category (e.g. rheumatoid arthritis, lupus, etc.), and renders an individual insulin-dependent. The pancreas, which otherwise works fine, stops producing beta cells that store and release insulin, a hormone which breaks down sugar from any kind of carbohydrate, whether simple or complex, and allows the body to use it for energy.
In the early months of 2015, as some of you know, our little one quickly got frightening skinny, was listless, insatiably thirsty, got up every two hours at night to use the bathroom. She was skinny because her body was starving and consuming all her body fat -- it couldn't process the sugar from food and use it for energy. She was listless because the brain depends on energy from sugar to properly function. She was thirsty because her blood sugar was way too high, and her body was trying to flush out the toxins. She had to pee, because she was drinking too much water. She couldn't sleep because she was in 5th grade and concerned she'd wet the bed. Her diagnosis, done easily with her pediatrician's prick of the finger to test her blood sugar levels, kicked off a full day of tests and T1D education for her and her four parents at Los Angeles Children's Hospital. She was pale, weak, frightened, and henceforth, until transitioning to an insulin pump later that autumn, on a every-three-hours glucose testing regimen (day and night) and 7-10 insulin shots a day. In equipment terms, that's 7-10 syringes daily, two types of insulin in two different vials plus backup in the event of emergency (e.g. earthquakes), 8-16 testing strips daily, alcohol swabs, a glucose testing monitor, many doctor visits, glucagon and an emergency kit in case she passes out from low blood sugar and can't ingest juice or another simple sugar by mouth. Since that autumn, she no longer needs regular shots because now she has a catheter with an inset stuck to alternating hips, changed every three days. The inset connects directly to a pump that looks like a pink pager hooked to the waistband of her clothes. Since the insulin is a constant drip, she doesn't need shots anymore in the arm or thighs, but we still have the back-up syringes in case the battery-operated pump fails. None of this addresses the depression that she entered the day she was diagnosed and didn't come out of for most of the year. Nor does it take into account the missed school days, because she was exhausted from bouncing blood sugar levels as the doctors tried to find the right ratios, and the public schools in our town, due to tight budgets, all share a nurse, who was only at her school periodically, and our girl was frightened that no knowledgeable adult was there to consistently help in case she needed it. It doesn't address the fact that she *did* need it, and so frequently just stayed home, and now, though money is tighter, goes to a Waldorf school with a class size less than a third of her public class, even with combined grades. It doesn't address how, for most of that first year, she didn't know how to eat because food was both necessary and a poison to her body. It doesn't address the mindless waiter who, just last week, brought her a regular Coke instead of diet, which shot her blood sugar sky high. And it doesn't address the lifetime of medical care and equipment that she will need just to manage this disease, to keep her healthy as she is right now, due to medical research, technology advances, JDRF advocacy and education, and Dr. Fisher and her incredible team at Children's Hospital Los Angeles. But, it does address the recent House vote to repeal and replace Obamacare with a system that does not protect those with previously diagnosed conditions, like T1D. If you know someone with T1D --- for example, our girl, now 13, --- consider sending this letter, which asks Congress to Consider Type 1 Diabetes Patients when the Senate looks to Reform the American Healthcare System. Feel free to use any of our story as part of your letter. https://www2.jdrf.org/site/Advocacy?cmd=display&page=UserAction&id=458 http://www.jdrf.org/press-releases/jdrf-issues-statement-opposing-revised-healthcare-legislation/ Last year, Shiloh's dad, her mom, her stepdad, and I spent Ash Wednesday with her at Childrens Hospital LA, because in the 6 weeks prior, this little one had become thirsty beyond words and had gotten too skinny too fast. She failed the easiest test in the world: a prick of blood from her finger. We found out that her beta cells had crapped out on their only job: to make insulin.
Ash Wednesday was day 1. Shy was paler than white as we learned how to administer the insulin shots that she'd need 6-10 times daily. A dietitian who looked like she needed a dietitian showed us with dirty rubber food toys how to measure carbs for a kid who'd never heard of the Atkins diet. A kind nurse who showed us her pregnant belly and told us that she'd been diagnosed with Type 1 Diabetes when she was 13 drew pictures on a white board of beta cells and sugar molecules and charts with arrows that pointed to optimal blood glucose levels. Only later, I realized why many of the hospital staff had smudges on their foreheads. I don't know much about the holiday except that it comes after a time of carnival, filled with carbohydrates that we, as of that day, needed to count carefully and measure in ratios of 1:14, 1:17, 1:15 against the insulin that, we were shown as Shy folded over the waistband of her pants, would be injected into whatever fat we could find on her skinny little body. That night Darby and I went home and drank a lot of wine because Shy went to her mom's house for the first night with T1D. The next day, she didn't go to school, or the day after, or many of the days -- 40%, perhaps? -- of the rest of the school year. She stayed with her mom for those first few nights. Darby spent the days over at his ex's house, the first time he'd had to spend so much time with her since 2006 when they realized that they didn't like spending so much time together. I, the stepmother, didn't go. Instead I went crazy at home wanting to see my sick kid who is another mother's kid. When Shy came back to our home, the every-three-hour blood sugar tests started. Darby took midnight, I took 3 a.m. Eventually Shy learned to sleep through them as we swabbed her finger with alcohol and pressed the tiny needle till a drop of blood squeezed out. In those first few weeks, she was starved -- literally. Her body had been starving without insulin to process the energy-giving sugars from food. She watched the clock and asked for a snack or meal every two hours, plates full of food. We shot her with needles and her spine and hipbones softened, but Little Miss Sunshine now had a body that no longer worked in concert with her mind. She fell into months of depression, angry at the new normal, questioning mortality, wishing she had not been born. Her older sister felt scared, at first, and then angry at how we all stood in the kitchen with calculators, adding up a cup of cereal and five strawberries and a quarter cup of soy milk, and how many carbs do you think this banana has, anyway? We pulled the insulin through the syringe while Rose had a tantrum because she was trying to tell us about something that happened at school, and Shy had a tantrum because she was sick of always getting shots, especially the ones at night that stung so bad we couldn't understand. We set the timer on our phones and Shy listened to her stomach grumble and watched Roo eat whatever she found in the cabinet, as she waited 15 minutes before eating the cereal and strawberries. By then she was hungrier than she thought she'd be, or not hungry enough to finish, but she'd already received the insulin and so had to eat exactly what was on her plate. Shots and finger pricks and tantrums and carb counts, Easter and her 11th birthday and then September came and the doctor called to say that on Rosh Hashanah we should all come to Childrens Hospital to learn how to use the insulin pump. On the Jewish new year, a nurse taught us how to insert and change the catheter every 3 days that would replace the syringe shots. The pump was hot pink, chosen by Shy for its color, which, we realized later, matched her school backpack and Luna Lovegood Halloween costume. We wanted to love the pump, but the insulin-carb ratios were wrong, and we didn't know that when Es fell into another depression, barely noticeable because she'd not really come out of the first one, it was due to her blood sugars riding too low. Though she tried to smile, she sat on the couch for most of our wedding celebration in September, didn't have cake, couldn't enjoy the company of the other kids. A few weeks later, the doctor adjusted the ratios and we saw the light come back to her eyes, the roses return to her cheeks. In her latest photos, you can see her new medical alert bracelet -- she went through three or so, but they all broke. The pump is clipped to the top of her pants. I'm now looking at a photo from a month after the wedding, 5 or 6 weeks after she got the pump, and one of the first days of smiling, which she does now frequently. Next week, instead of Childrens Hospital, we'll take her to Disneyland. She wants to celebrate a year since her diagnosis, which might sound strange to someone who hasn't witnessed her journey firsthand, but it's not strange to me. She should celebrate. She should be proud. These words don't really capture what Shy has been through, but though there's currently no cure for T1D, she has gotten through this grueling first year, and is healthy and thriving. |
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