Holes of Blue

 
I wake from anesthesia with a smattering of gray holes blurring the vision in my left eye. Since I’m in a hospital for a procedure on my spine—nowhere close to my eyeballs—I panic, my breaths shallow and rapid. I can’t see, I plead to the nurse fiddling with my IV, a bruise already blooming across the tired veins that snake the top of my hand. I feel as if I am drowning like the time I went whitewater rafting and was sucked underneath a Class 5 rapid aptly called “the whirlpool.” My breath is trapped within my chest.
 
Hmmm, the nurse says, that’s weird. I try to explain the gray holes, but my sentences feel shaved off at the edges. I am only in this Los Angeles hospital, far from my home in Portland, Oregon, because my neurosurgeon has been on the hunt for a traumatic Dural leak—a tear in the membrane that surrounds the brain and spinal cord that causes cerebrospinal fluid to escape—and this is the closest hospital that has a digital subtraction myelogram, a specialized machine to find it. A slip on black ice and then a landing on the back of my head seven years earlier has left me with concussion symptoms that mirror those of a Dural leak, hence the hunt. Another promised cure. A way out of the kingdom of the sick; a way back to my once fast-paced life.
 
The nurse keeps pulling at the IV line, commenting on my thick veins, and I stutter that there are holes in my eyes. My breath is puffing faster, and I’m not sure why I even let a chiropractor in Portland coax me into this neurosurgeon’s chase. The Portland chiropractor had told me he believes my remaining concussion symptoms—chronic migraines, neuro-fatigue, dizziness, nerve pain, brain fog, noise and light sensitivity—are not coming from my brain. He had leaped out of his seat during my initial evaluation, declaring, It’s all in your neck! And like anyone desperate for normalcy, I jumped up too. He told me I might have a traumatic Dural leak and said they are hard to find but easy to cure, and all they need is a blood patch, a “simple” procedure where a small volume of my blood is injected into the spine. He explained this by using his index fingers—his right finger was the needle coming out of my arm, and the left finger was the needle going into my spine.
 
The nurse returns with my husband, and I try to explain the gray holes as best I can. Like Swiss cheese, I say. He shifts his work computer to under his other arm and wipes his free hand through his curly hair so it stands up straight. The nurse leaves to call the doctor. It is already 8:00 p.m., and I need to get back to the hotel because I’m scheduled for a second digital subtraction myelogram tomorrow morning. I can’t veer off this plan. Just to get to this stage in my search for a Dural leak, I have already suffered through a Flat Test that required me to spend forty-eight hours flat in bed, then MRIs, then a myelogram, then a blind blood patch with an anesthesiologist over an hour away, then another one with a radiologist, a referral to this neurosurgeon in LA, a plane flight, a hotel room, and then more MRIs. But, my eyes, I think.
 
The nurse returns quickly with the message that I must see an ophthalmologist before I’m discharged. I am supine on the hospital bed, and my husband is looking down at me, unsure what to say, as I cover my palm over my right eye and then my left to scope out the gray holes. He no longer knows what to say because I was supposed to get better years ago, and he has lost track of all the procedures and surgeries. I haven’t, though. I am the keeper of these lists. Lists of what I have tried, lists of what I should try, lists of new doctors. Every item on every list has its own bulleted set of more lists. They document the endless needles in my head and the burning away of my left occipital nerve and the shots of platelet-rich plasma into my facet joints and the continual re-alignment of the top two cervical vertebrae. I have breathed into hyperbaric oxygen chambers and laid on mats with pulsed electromagnetic fields and sat in dark closets staring at magenta lights. I have had my head shaved and my scalp peeled back to transect damaged nerves. Ozone IVs, vision therapy, epidural injections, you get the idea.
 
I wink my right eye shut and begin to count the gray holes. But there are too many. And that is when it hits me. I am not prone to such abrupt realizations, but it feels so obvious. I saved myself from “the whirlpool” by tucking myself into a ball and shooting my coiled body out of the rapid as if in a cannon. I realize—finally—I will drown if I don’t veer off the plan. I have to tear myself from this mess too. Taking a full breath, I lift my head and say, I’m going home.
 
The nurse reminds me I’m not going anywhere before seeing the ophthalmologist. But I am done. Done. Done. Done. These gray holes have shaken something loose in me, and what I am beginning to understand in my fierce urge to get out of this hospital, to get away from needles and anesthesia and false promises, is that a shift is happening, a stepping out of the kingdom of the sick, and a stepping into a new kingdom, a kingdom I had not wanted to believe existed for me. The kingdom of the chronically sick.
 
Watching me from above, my husband nods his head—crescent moons of gray sagging beneath his eyes. He passes me my phone, and I leave a whispery voice message to my neurosurgeon. Cancel the second digital subtraction myelogram. Cancel the blood patch. I’m going home.
 
But there is no grand exit, only hours of waiting for the ophthalmologist. I am exhausted when he finally arrives and begins taking photos of my eyeballs with his iPhone. He diagnoses me with retinal hemorrhaging—an unfortunate side effect from anesthesia— and tells me to follow up with a retinal specialist in Portland to be sure. I cannot stand without falling over, so I am wheeled out of the hospital, my husband holding the vomit bag while punching in directions for an Uber.
 
We begin the laborious process of flying home. Another list. The canceling of the hotel room, the changing of the flight, the relief from our thirteen-year-old daughter that we are coming home early, the changing of the flight for my mother-in-law who had flown to Portland to watch her. My legs are jelly in the airport; my head a balloon that might burst. I wonder, my eyes squeezed shut in the too-tight airplane seat, what do I do when my illness becomes something I am, rather than something I am trying to fight?
 

*

 
I do not like to write about these things. They feel too private, and I prefer to hide my brain injury from the outside world. And I have a good life, a life with many limitations, but good nonetheless. Maybe I am writing these words to those in the kingdom of the healthy because I used to live there. I lived there until I was forty, the age when my head smashed on that concrete.
 
I was strong then, grew up a competitive swimmer. I plunged into California outdoor pools in the morning, afternoon, and on Saturdays, shaving my body and wearing paper-thin suits before every important meet. I would snap my cap over my scalp, suction my goggles over my eyes, and wrap my toes around the edge of the swim block, the sun tattooing tan lines into my back. My world existed in swim lanes. I was dumped by Ben Landers during a practice warm-up set. During a summer program at UC Berkeley, I lost my virginity to a man in the lane next to me. I analyzed Calculus problems during flip-turns. My hair always smelled of chlorine, and my skin was water-logged and pruned.
 
Even in my twenties and thirties, when I no longer had time or desire to train like that, I stayed strong. Sure, I had knee pain and allergies and a finicky bladder, but I functioned so well that I didn’t even consider other kingdoms. I worked at fast-paced jobs in education, traveled to Thailand and Cuba with my husband, lived overseas on a tiny Caribbean island, went on roller coasters with my young daughter. I danced, drank wine, turned up the music, and danced more. And I always raced toward water whenever I could—scuba-diving on The Great Barrier Reef, rafting through caves in New Zealand, floating like a star in vast expanses of ocean and cold Pacific Northwest lakes.
 
But now. Sometimes I forget how to walk my legs. My skull is always on fire. Drums beat inside my head. Even whispers can sound like leaf blowers. My life has shrunk to a dark and lonely bedroom, where I mutter these words into my phone, my eyes unable to stare into bright screens.
 
And I no longer belong to the water. In year two, I tried to swim in an indoor rehabilitation pool, but the noises echoed off the walls, and the fluorescent lights bore through my eyeballs. I even tried to kayak on smooth lake water, but the puffy clouds in the sky began to spin out of control, and the spinning didn’t stop for weeks.
 

*

 
Back in Portland, a retinal specialist tells me my gray holes are most likely from something called “bucking,” in which a patient tries to cough or otherwise strains against an endotracheal tube. This sometimes happens under anesthesia but will completely resolve, he assures me.
 
Over the next few days, one-third of my hair falls out. I receive a message in the hospital’s patient portal that they never found a leak and another message letting me know I owe them $3,500—something about my insurance now denying MRI coverage. I contemplate contacting the “It’s all in your neck!” chiropractor, but instead I visit my primary care physician. I tell her about my LA trip and the retinal hemorrhaging, and she puts her head down and covers her face with her hands.
 
She knew me before my head smashed on concrete, and during the seven years of searching for a cure, and when she lifts her face, I see in her eyes that she knows it is time. Time to stop the injecting into and the cutting of my body. Not a giving up, but a giving in. Now, it will be about the management of symptoms, and we discuss the doctors who will keep me from falling on my face: neurologist every three months, neuro-optometrist every six months, neuro-acupuncturist, osteopath, physical therapist, functional neurologist, physiatrist. And the regulars: medication, exercise, nutrition, sleep.
 
I will no longer have procedures and treatments that will keep me attached to hope, and I am scared to live in a place without hope. The cold air whips my face as I open the office door to leave. I look around the holes in my left eye and think, what now?
 
This relocation from the temporary, “I am recovering from a concussion” to the more permanent state, “I have a disability,” will require a new identity. Back at home, I scratch out the next treatments on my list: occipital nerve stimulator, transcranial magnetic therapy, another round of nerve blocks. I look at the crossed-out list, then at all the college-ruled lines below. They are blank; I am blank.
 

*

 
My osteopath suggests I try swimming again, so that day, my husband signs me up for a membership at an outdoor pool. I am shaking as I descend the ladder into the water, but I remind myself I am now in year seven, with more rehab under my belt. This time, I am sucking in fresh, cold air, not staring up into blazing lights. The outdoor pool is surrounded by fir trees in the same way the pool of my youth was surrounded by palm trees. I make my body straight like an arrow, streamlining my arms overhead, hands stacked on each other, and then push my legs against the wall. I’m inside a cannon again, shooting myself into a cushion of water. It feels like silk against my skin.
 
The distance between the backstroke flags to the pool wall is still as familiar to me as the length of my hand. I start with 500 yards that day, and over months, painstakingly work my way up to a mile and then 2,500 yards. My neck pain flares, flip turns kick up my dizziness, but I don’t care. When I am swimming, I do not worry about falling.
 
I order a kickboard, and then a pull buoy, then paddles, and then swimmer fins. I create workouts on index cards and slide them into Ziploc bags so I can refer to them at the side of the pool. Even in the cold-whipped winter, I descend into the water. As I backstroke, I watch the clouds change shape and the occasional bird sweep above. Sometimes, there are cracks of sunlight in the sky’s low-hanging gray, and sometimes, holes of blue break through the cloud cover.
 

*

 
Since I am no longer spending all my time fighting, my days widen. I travel to the pool several times per week and swimming becomes the first thread that pulls me toward something familiar. I take a tango lesson with my husband, and then my daughter and I record a dance video. My brain shoots fire with the music and movement, but when I pick up my prescriptions for the week, the pharmacist—the same pharmacist who always ignores me—tells me I look different.
 
I also have time to join a group of concussed moms. We discuss our years out from concussion like they are our children. Seven years, nineteen months, two and a half years. Everyone remembers the birth of their concussion like it is the birth of their child. Mine is January 4, 2016, 9:00 p.m.
 

*

 
After six months, I go back to the retinal specialist because my gray holes are still there. Hmmm, sometimes this happens, he says, more permanent damage. I think of the “It’s all in your neck” chiropractor. How I am not even angry or upset; I just want to leave this office and go swimming. If I were still healthy, I probably would have been upset. I would think how unfair this is. I would want to blame someone. But I have grown used to my gray holes and have adapted to reading around them on my phone. They will be a reminder to me when I want to jump up in the hope of another potential cure. I will squeeze my right eye shut and focus on the gray holes in my left eye’s vision. I will rub the three scars that run down the back of my head from the failed nerve decompression surgery. Press into them and feel the dense scar tissue.
 

*

 
Nine months after my stint in an LA hospital bed, I take my daughter school shopping. I make it through two stores, and then we go to a restaurant even though my brain feels like lead. My eyes are slitting closed. Since no one else is there, I ask the server if it’s possible to turn down the music. It is thumping through my eardrums, draining the remaining battery life in my head. The server says she can ask the manager but doubts he’ll do anything.
 
I decide to try on my new identity. I have a disability, I say. The first syllable of disability comes out as a stutter, but once it is in the air, its power dissolves. The server looks at me and laughs because I do not look like someone with a disability. I explain that I have a brain injury. She laughs again, says, Yeah, don’t want you to be like…and then makes her limbs lose shape, her head wiggle, and her mouth gape. When I look at her confused, she says, Oh, you’re serious. I nod my head, and she backs away, pink blotches traveling up her neck.
 
The server’s reaction also no longer bothers me. I assumed I would feel desperate within this new identity, without new treatments to cling to. Instead, I feel like someone has stepped off my chest, a relief, which is its own kind of hope. There is no pressure to overcome the impossible in this new kingdom. Here, all I need to do is live.
 
I roll my eyes at my daughter after the server leaves, and we both chuckle. We navigate through our plastic menus, the music still thumping. By the time we order, my head is thumping too, and I slip in earplugs and find my tinted glasses in my purse. I then swallow a sumatriptan, a migraine medication that will make my body numb, and, if I’m lucky, my head numb too. My daughter and I order lo mein and slurp our noodles.