Hide and seek
The boat jostles and bumps over the crests of waves, getting air then crashing down in a way that twists our stomachs. My left hand grips the rope on the side of the boat’s pontoons, the outside of my wrist chafing on the weathered fabric. I chuckle to myself, realizing that this is the most I’ve worked my arm muscles in a year.
I look around at the blue, blue, blue. Royal blue water, turquoise farther in the distance, closer to the shore. Sky blue cloudless sky. Even the boat is blue.
My back bakes in the sun and my right foot sizzles. Across from me, Michelle and Matt are bouncing, Matt laughing, Michelle looking terrified. My right arm wraps tightly around Jack because my experience is more similar to Michelle’s than it is to Matt’s — after a year away from the ocean, getting tossed off a fast-moving boat in water hundreds of feet deep could be traumatic.
My breath quickens as the wind and swell pick up. I remind myself to breathe deeply and slowly, knowing that anxiety-induced breathlessness is the one kind I can control. As I maintain my death grip on the rope and focus on my long inhale-exhales, it hits me all at once — I’m in Hawaii. In the middle of the ocean. My favorite place, and my other favorite place. I’m not in a hospital. I’m with my boyfriend and four friends. It’s sunny, it’s beautiful. I can breathe. I’m not wearing oxygen. No one on the boat that didn’t know me would think there was anything wrong with me, other than a cough. I’m happy, happier than I can remember being in a long time.
We continue on toward Molokini and I smile and smile. I wonder if this is the last time I’ll ever come to Hawaii, and then I banish that thought and look down at the water, noticing the way the boat cuts through it so forcefully yet so elegantly. It’s a beautiful Wednesday.
On Thursday night, I sit on the lanai of our condo in 90-degree weather in a long-sleeve shirt, sweatshirt, yoga pants, and a second layer of sweatpants on top. My body won’t stop shivering, so I’m searching for the hottest place I can find. Jack comes out onto the patio to get the grill ready to cook leg of lamb. I know I’ll have to leave the patio when the grill gets smoky, and I wonder where I can go to avoid freezing. The bedroom is out of the question — the fan and A/C keep it a frigid 68 degrees. My parents’ bedroom is even colder.
Finally, I drag myself up off the outdoor sofa, the bag with my oxygen concentrator draped over me cross-body style, pulling my shoulders forward. Into the bathroom I go, where I pull out the blow dryer and start blow-drying my already-dry hair, face, neck, chest, back, legs. Anxiety begins to set in; it’s completely illogical to feel hypothermic in 90-degree heat. But when does my body ever act in a way that’s logical? It’s illogical to get sick while on three oral antibiotics, two inhaled antibiotics, and 35 other medications. Since my life never feels logical, blow-drying my entire body in a bathroom in Hawaii doesn’t even feel that crazy.
But a case of severe chills, for me, is ominous. When I eventually take my temperature, I have a fever of 103.3. My stomach drops. Burkholderia cenocepacia is saying hello again, and nothing but IV antibiotics can shut him up.
Once we get to Molokini, we put on our snorkels and jump off the side of the boat. When my face hits the water I’m transported back to the many snorkel trips I took with my dad and brother when I was young. Those snorkel trips made me want to be a marine biologist.
On one of the first snorkel trips I remember taking, at La Perouse Bay in Maui, I swam around with a laminated card in my hand showing pictures of Hawaiian fishes with their names next to them. A beautiful, shimmering fish below me, rainbow in color, swam under a coral. I scanned my card to find the fish, utterly transfixed. The ornate wrasse. Diving down, I held my breath and felt the pressure build in my ears. As a kid, diving down wasn’t so hard like it is now. I followed that fish around all day, and to this day it’s my favorite fish.
At Molokini, I lose sight of Jack and Michelle and Matt and Justin and Ari as I spot an ornate wrasse deep below me. Taking the biggest breath I can muster, I launch down headfirst, dolphin kicking toward the little guy. My lungs start to sear after five seconds underwater, and I flip over and shoot up to the surface to blow the air from my snorkel and breathe. Then face back down again to stare at the reef. Chasing sea life isn’t as easy anymore, but I’m here. It hits me again. I’m in the ocean. In Maui. Without oxygen. Swimming. It feels like the biggest victory I can imagine. My smile underwater breaks the seal of my snorkel mask and water floods in. I come up and pull my mask off, treading water, catching my breath, still smiling in disbelief.
It’s a couple hours after my fever spiked above 103, and I’m in the emergency room at Maui Memorial Hospital. Before the trip, we’d looked up the hospital on the island to find out if it had an ICU, an interventional radiology team, and competent pulmonologists. I didn’t think I would end up needing their services; mostly, the research was meant to convince my Stanford medical team that I’d done my homework and had fully thought through my decision to take the trip.
The IV alarm blares like a siren, a foot away from my head. After five minutes of sleep, the IV antibiotic had finished, and the pump won’t let me forget it. I press the call button for the nurse to come shut off the alarm so I can catch a few minutes of sleep before going to my next test. No one comes, so I fiddle with some buttons on the pump, familiar enough with how they work by now to silence it temporarily.
I keep wondering: can this be real life? I think, maybe my life can be like this again. Maybe I can walk on the beach and do long open-water swims and start surfing again. Maybe I can help with the dishes and not freak out over a bad night of sleep. Already, in just six days, showering normally has stopped feeling remarkable; maybe, just maybe, I’ll stay off IVs long enough that submerging underwater will stop feeling like a long-lost vestige from my past.
The ocean has been a part of me since I was three years old, when I first learned to swim. It’s always been as important to my identity as the fact that I’m a woman, that I’m an atheist Jew, that I have CF. Recently, I’ve been forced to let go of that piece of myself, as weeks out of the water turned into months, and months turned into a year.
Stanford gave me a shitty prognosis a few weeks ago. As my mom says, it can’t be sugarcoated. After my harrowing year in and out of the hospital at UCLA and at Stanford, the doctor I trust most in this world told me that if I go off IVs for any extended period of time, I’ll die within the year. IVs are keeping me from a large part of my identity, but they’re keeping me alive. The doctor said he would understand if I wanted to stop the IVs, because my daily medical regimen now is just plain exhausting; he would be okay with it if I wanted to move back to LA to be close to family, stop IVs, focus on maintaining comfort and quality of life. Transplant is probably not an option, he said. They would keep trying, he said. They would send packets of information about me to the transplant centers likeliest to take on a case as risky as mine — Toronto, Pittsburgh, Duke, Cleveland. But I shouldn’t hold my breath, he said.
For a few days, being in Maui and seeing all that I could do made that prognosis seem ridiculous. How I felt the first few days of the trip gave me hope that I could reclaim my old life again, my old identity. That hope felt good. Even now that I’m back in the hospital, battling the same old infection, running through the same old tiresome drill, I feel a little more hopeful.
Some might think it was irresponsible to take an IV holiday so soon after the doctors said I couldn’t survive off IVs. But life is a balancing act — as patients, we have to keep our bodies healthy, yes, but also our minds. We have to know that there’s life out there to be lived, however sick we get. Whatever it takes to remind us of that is worth it, in my eyes. Calculated risk-taking is the name of the game for me now, rather than cautious sheltering.
I couldn’t dive as deep this trip as I could when I was a kid. I couldn’t surf at all, when just a year ago I was charging. I lugged my oxygen concentrator to the beach (or rather, had Jack lug it). Things are different now. But in some ways, everything is the same — the same peace descends each time I jump in the water, the same euphoria when a sea turtle or a reef shark swims below me. The same simple pleasure comes from eating big dinners with family and friends, from sitting on our patio with wine and cheese.
After a long night in the emergency room, I get admitted to the step-down ICU at Maui Memorial. My Stanford doctor calls to check in on me at 4:00 a.m. Hawaii time, but I’m finally asleep, so he leaves a voicemail.
Later in the day, he tells my family that he wants me out of the hospital in 24 hours. He wants me to enjoy the rest of my vacation, just with home IV antibiotics. That means no time in the water, but I’m learning that there’s more to life than Plan A. The particulars of Plan B — R&R, good meals, reclining in the shade with a good book — sound pretty damn good right about now. Better, at least, than staying in a hospital bed for another few weeks, getting weaker, waiting for the drugs to suppress this infection.
I’ve quoted this saying from a fellow CFer before, but it just hits so close to home: reality always finds us. Being in the hospital and on IVs is my reality, as much as I would love to play hide and seek, staying healthy and hidden on an island forever.
Before reality found me, I got to do things that bring me unadulterated joy for 6 straight days. The infection caught up to me, but I have two words for it: game on.