by Sukey Forbes
I assumed that if I could just stop shaking and start breathing again, maybe we could get back to having a vacation while we were still on vacation. We’d dodged a bullet, and now I wanted to put it all behind us.
Around midmorning I saw Annie out on the lawn in front of their house. She was wearing a black Speedo, playing with the children, drinking her coffee, and helping Harry tack up a windsurfer for his first sail of the day.
I pulled on a pair of shorts and a T-shirt, grabbed a cup of tea, and walked downstairs. The kids had caught a fish and were giggling and chatting as they watched it swim around in a bright red bucket.
I walked across the lawn and gave my sister-in-law a big hug. “Annie, we can’t thank you enough for last night.” Even as the words came out of my mouth they seemed so inadequate, pathetic. But it was her response that set me back on my heels.
She took a sip of her coffee and glanced over at Harry.
“Sukey, we were lucky last night. That could have ended very differently.”
I felt as if I’d been kicked in the gut. She looked so grim. I was actually a little ticked off at her for reverting so quickly to “Commando” mode. Why did she always have to find the cloud in front of every silver lining?
Anne was silent for a moment, and I could tell she was trying to decide how to say something she knew I would not want to hear. When she turned to me, it was with a focus more intense than I’d ever seen from her before.
“Sukey, I want you to listen to me very carefully,” she said. This was the chief of pediatric anesthesia speaking, not just my sister-in-law, and her eyes were burning into mine. “Last night was one of the scariest moments of my entire career.”
My hand went limp, nearly pouring tea down my legs.
“There’s a condition called malignant hyperthermia,” she went on. “It’s genetic. It’s so rare that the average pediatrician will never see it. I’m an anesthesiologist in a teaching hospital, so I’ve seen it a lot.”
I took a deep breath to try to slow my pulse. “You’re saying there’s more to what happened last night than what happened last night? Like another shoe that could drop.”
“That’s exactly what I’m saying.”
I looked out across the bay, and the sweat in my scalp began to bead up. I saw all that open water and felt the heat and then the sense of emptiness and vulnerability swept over me again. Annie’s assessment made perfect sense. I felt the truth of it in my bones—I just didn’t want to acknowledge it. Ostrich style, if we never admitted the danger, then maybe it would just go away.
“We see it in the OR all the time,” she went on. “The trigger’s usually halothane or another agent we use, a muscle relaxant that’s like curare. But there’s also something called a nontriggered malignant hyperthermic reaction. I think that’s what we saw with Charlotte last night.”
Defended as I was against the message, I was also too afraid, and too limp in the heat, to resist it. So I just listened, staring blankly.
“Marines in boot camp, football players dropping dead in August . . . That’s a heatstroke. This is different. This is in the cells of the skeletal muscles going completely haywire. That’s why we saw the rigidity in Charlotte’s limbs last night. All it takes is a touch of fever from a cold, the flu . . . anything. Hypermetabolism moves through the body like a wrecking crew. Potassium leaks out of the cells and into the pericardium and you go into cardiac arrest.”
I’d heard more than I could absorb. I started scanning the bay again, wishing I could simply vanish into it.
Then she added, “By all rights and logic, Charlotte should have died.”
For another moment I stood silent, feeling the hot wind scorch my face as Anne and I looked into each other’s eyes.
“What should we do?” I said.
“There’s an antidote called dantrolene. That’s what you use when this happens in the OR. Every hospital keeps it on hand, but it’s not foolproof. So the important thing is to never let it get that far.”
“Which means . . .”
“It’s imperative that you tell your pediatrician about this and have it entered into Charlotte’s records.”
I nodded, but I could just see our doctor rolling her eyes and writing me off. One more Internet Mom with too much time on her hands and too much half-baked information from a million crackpot Web sites.
I asked Anne if she would speak directly with Charlotte’s doctor for me. She said that I should stick to my guns, but that, if need be, she would be willing to call her up as well.
But, owing to the nature of the disease, Anne and I talked about prevention, not cure.
“Outdoor sports in the heat,” Anne said, “things like tennis and softball—out. Hot yoga—out.”
“Are you sure? I mean, I know you know your stuff, but . . .”
“There’s a diagnostic test, but it involves removing a square-inch chunk of tissue from the quadriceps muscle. If the muscle contracts in response to the reagent, the test is positive. Trouble is, the test doesn’t get you anywhere because at the end of the day there’s really nothing we can do to make this go away or even make it better. The best approach is simply to assume she has malignant hyperthermia and act accordingly. Manage her activities accordingly. Hope for the best.”
“Hope for the best . . . ,” I repeated.
After a while I said, “No test, then.”
“After what I saw last night, there’s really no doubt in my mind. I think we should just pretend she had the test and that it came back positive.”
At dinner that night I thought I saw Anne watching Charlotte more intently than usual, her eyes softer than usual. At the time, I chalked it up to a new attachment based on getting through the crisis together. Looking back now, I interpret that look as Doctor Anne knowing what was ahead for my daughter, and feeling a special compassion.
Before we left North Carolina, Michael and I spoke to Annie again several times to make sure we knew everything that could be done and were set up to do it. Then I think Michael, ever the optimist, always trusting in God, filed the anxiety away. Me—I remained devastated and confused, but at least I had my marching orders. I always do best with marching orders. Manage her fevers. Hope for the best.
As soon as we got back to California I spoke to our pediatrician. I tried to explain that my sister-in-law was a specialist who saw this syndrome a lot, but, just as I’d expected, this Bay Area doctor looked at me like I was from Mars. Even with my most persistent nagging, it took three checkups before I succeeded in getting her to enter the suspicion of malignant hyperthermia into Charlotte’s record. In the end, though, just as Annie had explained, there was really nothing more she or anyone else could do. We could monitor and maintain, but we could not cure.
Over the next two years, Michael and I followed every precaution, especially Annie’s warning about no strenuous activities in the heat. Charlotte had the usual bouts with colds and flu, the usual fevers, and each time, following Annie’s instructions, I managed the temps with alternating doses of Tylenol and Motrin to maximize the consistency and effectiveness. With time, though, it became easier to qualify those dire warnings with the fact that Commando Anne was prone to worst-case scenarios.
Increasingly, even as we continued to do all the right things and to follow all the necessary precautions, I let the specific threat fade deeper into my unconscious. Call it denial if you want, but it’s also called not being able to get your head around the idea that your child has a time bomb inside her that no one knows how to dismantle.
When Charlotte died almost two years to the day after the incident on the Outer Banks, the pediatrician who had been dismissive of my concerns called me to offer condolences. I can’t remember exactly what she said, but a large part of it had to do with feelings of guilt, a territory I would explore extensively over the years to come. I had been right, of course, but vindicatio
n was the last thing I wanted. I would give anything to have been wrong.
What that conversation did accomplish was to underscore the lesson that I should always trust my instincts, that statistics and rational deductions can take you only so far, and that much of our existence lies well to the margins of the bell curve. As my great-great-great-grandfather wrote a century and a half ago, “Sorrow makes us all children again—destroys all differences of intellect. The wisest knows nothing.”
3
To Whom Much Is Given
From the window of the small seaplane I could see the familiar outline of Naushon, then Pasque, and then Nashawena, the last island in the archipelago before Cuttyhunk. Farther out, beyond Martha’s Vineyard and Nantucket, the rising sun glinted off the blue Atlantic on a gorgeously clear summer morning.
It was just a short hop from the mainland, and soon we were descending over a red farmhouse beside a pond with swans gliding across the surface. From the green meadows above, Highland cattle were meandering down toward the bright, white beaches, and even though I’d seen these scenes a thousand times, I shook my head in disbelief at just how beautiful it was.
The pilot took us around again, and on the second pass I could see our cousins standing in the yard, looking up, pointing and waving. Then the blue of the pond again, the tall grass blowing, the snowy egrets rising out of the marsh, and I burst into tears. “Why are you crying?” my kids asked, and then I had to laugh. It wasn’t only that these islands were so tear-inducingly beautiful. It was that I was just so very, very glad to be back. I’d been in California for fifteen very happy years, but as much as I’d loved it there, New England and Naushon had been calling me home.
Once there’d been a “kingdom by the sea,” and therein a love so perfect that—at least according to Edgar Allan Poe—it inspired envy on the part of the angels, who Poe fingered for the death of his beautiful Annabel Lee. I never blamed God or the angels for what was about to happen to us, but I do remember this one moment of transcendent beauty as we soared above the islands, thinking that nobody had a right to be so incredibly lucky to have such a perfect family, and such a perfect place.
We did a water landing, then motored up to the dock where my cousin, her husband, and their two children were waiting. They gave us hugs, then helped us lug our stuff—mostly canvas bags loaded with windbreakers and many different colors of Crocs—from the plane to their small off-road vehicle.
My cousin’s branch of the Forbes clan had bought Nashawena as an enterprise entirely separate from the family’s ownership of Naushon. My cousin and I were exactly the same age, and we’d actually met as adults on the bigger, family island, only to discover that we were then living in the same town in California. The joke was that this was my first trip to her place, even though I’d summered a mile or two away my entire life.
But this was a year of major transitions when I was determined to break down all the old barriers and reconnect with what truly mattered. I wanted to slow it down, settle in, and extract every ounce of pleasure I could from this beautiful world that I was reembracing as my birthright.
Happily, the kids were a great match from the get-go. Our Beatrice and their Rachel were both three. Alex and Charlotte were six, and Cabot, the senior man at seven, was highly adaptable, which meant that their mothers were able to slip away and go for long jogs all over the island, darting through the cattle as we cut across the meadows, occasionally being followed by a seemingly very curious coyote.
But most of the time both families huddled as one big group outside, enjoying the perfect weather. That first afternoon we had a picnic on the beach, and the kids played in a stream that emerged from one of the sand dunes. They caught crabs off the dock, then spent hours climbing around in a magnificent tree fort where several branches had grown together in a bog—all very Swiss Family Robinson.
Beatrice, Charlotte, and Cabot, summer 2004.
Later, back at the house, after an outdoor shower and tick checks, we all waded through their meticulously maintained garden to gather vegetables for dinner. The sun was giving everything that honey-colored Kodachrome glow as the caretaker stood by to steer us off any produce that wasn’t quite ready for picking.
The farmhouse on Nashawena had been built in 1820, and it had been left pretty much as it was. Captain Merrill had lived there for years and is known to roam the halls smoking his pipe. Many family members have smelled tobacco in the house even though no smoker has been in residence there for decades. There was no electricity—we ate by the light of oil lamps and candles—and there was a hand pump for water, and saggy beds and horsehair mattresses, but the grilled fish with vegetables less than an hour off the stem were incredible.
Around the table we played High Low, a game that Michael had invented as a way to get the kids to communicate. We went around the circle and everyone had to talk about the high point of their day, as well as the low. Oddly, they never got around to me, but I think I would have struggled to come up with anything I could have singled out that was less than perfect. I could now truthfully say that I had everything I wanted in life, made perfect by a magical new beginning, replete with new discoveries for my kids.
Just before bed we had the kids draw pictures and write notes for the fairies. We had a long-standing tradition of making up stories about fairies, and here the added touch was for the children to go out into the pasture at dusk and put the notes and drawings in the “fairy holes.” Then, in the early morning sunlight, when the dew was sparkling on the “fairy blankets” of spiderwebs spread across the high grass, the kids would go out and, to their amazement, find gumdrops and little surprises in the places they had left notes. The fairies would keep the notes.
We’d moved back east in June and immediately put the kids in camp for a couple of weeks, hoping they’d have a chance to get to make some friends in their new town of Weston, in the Boston burbs. Then we’d spent the entire month of July on Naushon, making a major commitment to simplifying and circling the wagons. We limited the number of guests, and those who were invited came down just for the day rather than the week. I was focused on getting to know my extended family again. It was a time of quiet consolidation and built-in companionship. It was all about reconnecting with the long traditions that were my birthright. I’d grown up in Boston but I’d become an adult in California. In Boston I’d never felt the Sukey so much as the Forbes. In California I’d left the Forbes behind and let the Sukey emerge. Now I wanted to reconcile and integrate the two parts of my identity.
When I was younger, I’d often resented the fancy, dynastic hoo-ha I was supposedly a part of, so I came of age desperate to see what life was like where nobody really cared about crusty old New England bloodlines or even knew the names. I couldn’t wait to get away from big, drafty houses, long on charm but short on heat, from the overcooked roast beef and soggy vegetables, from the requirement that we accomplish but never strive. So right out of college I moved to San Francisco, where Michael and I met and got married, and where, as Sukey Bigham, I gave birth to three children.
During our Wild West phase, Michael’s very un-WASPy ambition made the most of the gold rush in biotech. He came out of the Stanford business school in 1983 and went to work in investment banking focused on health care. He became CFO, later COO, of a company that developed a highly successful AIDS drug and flu treatment. He took enormous risk professionally and it was a very wild but exhilarating ride. It went public in 1992, so when Michael left three years later it was on a healthy cushion of stock.
Just about everyone we knew in California was in a similar situation. They had houses that were plenty big, wiring that was up to code, and perfect climate control. The vegetables they served were crisp, the parties they gave were fabulous, and everybody was rolling in bright, shiny new money—a scene my grandmother would have dismissed with the withering arch of a single brow.
A leader in his field and at the
top of his game, Michael joined a company developing monoclonal antibodies, which he ran for four years and then took public. After that, we decided to cash out and take a couple of years off to smell the roses, or at least the redwoods.
We moved from Silicon Valley up into the Santa Cruz Mountains on forty acres we bought that abutted another five hundred acres of timber that had been put into conservation. The property came with a Japanese Craftsman–inflected house with exposed beams, a caretaker cottage, a guesthouse, a boat-building studio, and a lumber mill. For three years we lived completely off the grid, like posh pioneers who could nonetheless jet away whenever we felt like it. Our friends were all self-selected rich people pretending to be rednecks, on the lam from Hollywood, Silicon Valley, or the wine business, and we thought we had it made.
We had propane for power and heat, and, in addition to our own well, riparian rights to the creek that flowed down the mountain (and supplied all of Santa Cruz). We pulled off water, but it had too much iron, so we treated it with reverse osmosis and ultraviolet light in our own water treatment plant with three twenty-thousand-gallon tanks. We also had a pond, fully lined and treated for swimming, and a waterfall. In keeping with our theme of self-reliance, we raised chickens in a wheeled cage that we made on site to the specifications of each of the planting beds. We could move the “chicken tractor” with the birds in it around our vegetable garden, letting the fertilizer fall like rain when the beds were fallow.
Every year we went to a “pick your own” farm in Santa Cruz and came back with buckets of olallieberries. This is when Charlotte and I would spend the rest of the day making jams and pies. She loved to be my helper on this, stirring the sugar into the pot, spooning the hot jam into the jars, then securing the lids and turning them over to cool. But she took even greater pride in writing “Bonny Doon Olallieberry Jam” on the labels in her own rather inventive script. We’d give the jam as gifts to our friends throughout the year, and when the supply started to run low she would start asking me how long until the next berry-picking season.