March of Misery
On pain and Swallow-tailed Kites
I was on the phone with my doctor’s office, and I couldn’t keep my tears from falling. I was in so much pain, filled with anger and helplessness. The receptionist was kind but useless. I was unmoored. And then, I saw a bird I didn’t recognize soar past my window. It took my breath away. I stopped crying. I had to remember it—its white underwing with black tips, its deeply forked tail. I had to know its form so I could learn its name.
The receptionist said she’d noted my concerns and would have the physician’s assistant return my call as soon as possible. I watched the unknown bird glide out of sight. My tears dried on my cheeks.
It began with a dead car battery. Well, that’s not entirely true. For about six months, I’ve lived under the quiet strain of ever-present stress. Two hurricanes. An unknown viral infection that saw me lose seven pounds and a bit of my sanity. Neuropathy in my hands that turned out to be a herniated disc in my neck. Something that isn’t thyroid nodules but feels like a marble stuck in my throat. And, of course, the ever-present difficulty of living with multiple sclerosis. All of these things had berated me for months, and then my car battery died.
In the first week of March, I tried to start my engine. Click click click. I tried again. Click click click. The dash blared every available warning indicator like the window of a dollar store filled with various neon signs for sale. I tried a third time. Click click click. Not a good omen, a death at the start of spring.
I turned the car off, went back inside, hung up my keys. I plopped down on the couch and put on a movie. I can’t remember which one. I was dead inside, just like my car. This was the last straw for my nervous system. I could do nothing but let my eyes glaze over and turn my brain off.
The next day, I drove my dad to the airport. We took his car. Then I returned to a home I would be alone in for the next three weeks.
After I finished the call with the receptionist, I opened the Merlin app to identify my bird. I tapped the step-by-step ID button.
Q: Where did you see the bird?
A: Current location
Q: When did you see the bird?
A: Today
Q: What size was the bird?
A: Between crow and goose
Q: What were the main colors? (Select from 1 to 3)
A: White. Black.
Q: Was the bird…?
Eating at a feeder
Swimming or wading
On the ground
In trees or bushes
On a fence or wire
Soaring or flying
A: Soaring or flying
Creating list of possible birds…
A few days after my battery died, I planned to jump it and head to the auto shop for a new one. I went through my usual morning routine—meditate, feed the cat and fish, breakfast and a cup of tea. Then I went to shower, and as I got in, I caught my pinky toe on the edge of my wooden bath mat. The pain was instant, a sharp, blinding sear. I grabbed the edge of the shower, my fingers digging into the wall for support. Eventually, I caught my breath and stepped gingerly into the shower, careful not to put any weight on what was surely a broken toe. The hot water felt like permission to scream at the world. I cried and cried and wondered why this was my life.
When I got out of the shower and put on my glasses, I saw that my toe was purple, but at least it was pointing in the right direction. I called my aunt, who’s a nurse, to take a look at it. She came over and confirmed it was probably broken, but it wasn’t so bad that I needed to go to the doctor. She rummaged in her trunk and found a roll of cohesive bandage, that stuff that sticks to itself. She told me to cut a strip off and use it to buddy tape my toes. Then she hugged me and left.
Again, I was alone, now with a dead car battery and a broken toe.
The first bird suggested was the Swallow-tailed Kite. I knew immediately that this was my bird. The photo showed the same white wing linings and blue-black flight feathers, the same forked black tail. One of the videos mirrored the graceful flight I witnessed. It was nearly motionless while it circled, searching for insects and small creatures in the tree branches. I was enamored, floored by its beauty and lightness of being. The photos and videos didn’t do it justice, but I had the memory of those few moments when a Swallow-tailed Kite and I existed in the same space and time. Briefly, I was at peace.
You don’t realize how much work your pinky toe does. It’s such a tiny thing, but it keeps you upright, keeps you stable. I spent most of the next week laid up on the couch with my foot elevated on a pile of pillows. My toe throbbed, and the pain extended to all the other parts of myself I used to compensate for its loss. My heel was sore from putting my weight on it. Even my good foot hurt because I was leaning on it more than usual. My hips were misaligned, displaced by my lilting gait.
While I cursed my stupid toe, I got a call from Social Security. Seven months after I began my disability application, I had finally been assigned a case worker. She called me to tell me I would be receiving two packets in the mail that I needed to fill out: a work history and a function report. These were the same two forms I had completed at the start of my application, but because the wait times were so long, I had to do them again. Bureaucracy.
There is something uniquely depressing about writing down all the ways you can no longer function as a fully formed human being. I detailed everything I had lost, the way my insides were gouged out, turning me into a shell of the person I once was. I listed the few things I was still capable of, as well as the mountain of things this illness took from me. I wrote it all down, and I wept.
From the Cornell Lab of Ornithology:
“Swallow-tailed Kites spend most of their time in the air, capturing and swallowing their food in flight. Rarely flapping their wings, they soar and make tight turns, rotating their tail to steer. They are very vocal when alarmed or when clashing with other members of their own species. Breeding pairs appear to be monogamous, and they may either pair up during migration or carry over their relationship from previous years. They establish small territories around and above the nest, and maintain them by flying silently in circles above the nest tree. Intruders are chased with loud scolding. Multiple pairs may nest near each other in “neighborhoods,” and nonbreeding birds often hang around carrying food and nest materials to breeding females (which reject the gifts). Swallow-tailed Kites often roost communally near nests, and right before migration hundreds of kites may roost together.”1
As the week wore on, my toe began to feel a little better. I hadn’t replaced my battery yet, but I could at least carefully slide my foot into my Birkenstocks and drive my dad’s car to my doctor’s appointment. I was scheduled for a second epidural steroid shot to help with my herniated disc. The first one gave me such relief. I was hopeful this one would bring me closer to where I was before, when I could turn my head without pain and lightning bolts weren’t shooting down my hands.
It’s not comfortable having something injected into your spine. But the discomfort from the first shot was brief. It only took a few minutes to numb the area and inject the medicine. I knew I could breathe through it and would feel immediate relief.
I didn’t, though. I developed a blinding headache, and my left foot went numb. The nurse had me lie down, which helped somewhat, but not entirely. After about twenty minutes, she gave me a shot of Toradol for the pain. Then the doctor came in.
“It’s possible we nicked something and caused a cerebrospinal fluid leak. It happens sometimes.”
So nonchalant, as if the ocean cradling my brain and soothing my nerves wasn’t drifting off into oblivion. He made it sound like I was losing my tonsils or appendix, something I could live without. But I could feel my brain pressing against my skull. I felt the lack of fluid, and the lack was a primal pain.
The doctor sent me home with instructions to lie flat as much as possible, take painkillers as needed, and drink a lot of caffeine. He said the leak should resolve itself in a day or two.
I went home to my empty house and cried for my empty life.
I wonder what it would feel like to be so light that you float effortlessly on the wind, to be so beautiful while doing nothing but existing. Sometimes, I feel heavy enough to sink into the molten core of the earth. If I melted into oblivion, would I still be able to see the birds?
A week passed, and the headache remained. I called my doctor’s office, and they told me to come in for a blood patch. They would take my blood and inject it into my spine where the leak was, which would clot and seal it. This ended up hurting more than the steroid injection, and I nearly vomited. But afterward, the headache lifted. I felt relief for the first time in a week. I felt relief for a couple of hours until the headache returned, worse than before.
I said headache, but a more accurate description would be a jackhammer between my eyes, a mallet splitting my skull in two, a giant crushing me between his fists. I have never experienced such intense pain, such evisceration of being. A mountain erupted from my forehead and smothered me beneath its ascension. I became pain incarnate. I ceased to be a person or even a body. I was only pain, and I could do nothing to escape myself.
I feel hollow inside, but the Swallow-tailed Kite is hollow, too. Its bones are dense honeycombs, deceptively strong in their lightness. That’s how it stays aloft with such little effort, how it breathes efficiently enough to remain on the wing all day. The Swallow-tailed Kite is a contradiction, a hollowness that fills the sky. My own cavernous being waits, yearning for outside voices to echo inside of me, a reverberating reassurance that I exist, that I am real, that I mean something to someone.
When the PA finally returned my call, I told him my symptoms. In addition to the headache, which was constant, I also experienced other ills whenever I was upright. The headache worsened, my feet went numb, I became nauseous and clammy, I was weak and unsteady, and the fatigue was immense.
“That’s not uncommon after a blood patch,” he said. “It’s too soon to do another one, so just keep staying horizontal, taking pain meds, and drinking caffeine. Hopefully, everything will resolve in a few days.”
Hopefully. Not definitely. Not usually. Hopefully. The word filled me with dread. And yet, I can do nothing other than what I am already doing. I am at the mercy of a body that is already broken. I don’t know how much more it can take.
My last shower was five days ago. I can’t remain upright long enough to give myself that small luxury. I haven’t eaten much. It’s difficult to do while lying down. Mostly, I distract myself with TV, movies, and books. Sometimes it helps. Sometimes, I just cry. My couch has become my prison, but at least I have a window. And now I have, if nothing else, the hope that another Swallow-tailed Kite will fly past and remind me that there is still beauty in the world.
*For more information on the secret lives of Swallow-tailed Kites, check out this article from the Audubon Society.
WEEKEND POTPOURRI:
Currently on repeat:
PAIN
By Linda Pastan
More faithful than lover or husband it cleaves to you, calling itself by your name as if there had been a ceremony. At night you turn and turn searching for the one bearable position, but though you may finally sleep, it wakens ahead of you. How heavy it is, displacing with its volume your very breath. Before, you seemed to weigh nothing, your arms might have been wings. Now each finger adds its measure; you are pulled down by the weight of your own hair. And if your life should disappear ahead of you you would not run after it.
this is shatteringly real and yet suffused with light — wondrous meditation 🙌🏽
Gorgeous writing, as usual, straight from the marrow. I cannot help but to send you healing thoughts and deeply felt wishes that you feel better very soon. That Kite you saw, is, of course, Hope and the beckoning wings of a new season. With affection and admiration. Matty ( Time Out of Kilter)