Spinal Tap: -11

I am sitting in a shade of what might be a Virginia sweetspire in the lovely zen like courtyard at the National Institutes of Health (NIH) in Bethesda Maryland. Birds are trilling. Bees are sipping at lavender blossoms. Mysteriously, I have the courtyard to myself.
There are easily a thousand life-altering/extending dramas going on inside this complex. Once I post this, I will take the elevator to the fifth floor, check into Day Hospital, and allow someone to pierce my spinal cord with a needle and extract some fluid. The procedure itself will be not be much more involved than the extraction of blood earlier in the day. The tricky part is the aftermath.
The first time I had a lumbar puncture, it was followed by a spinal headache. This happens when the puncture doesn’t close, and the spinal fluid continues to drain. The brain has nothing to float in, so it scrapes against the brain pan. As a consequence, moving my head in any direction prompted extreme vertigo. It was torture. My husband called the University of Iowa, where I’d had the procedure. They advised me to drink a lot of caffeine. I drank coffee. The torture continued. Finally, my husband drove me back to the hospital and they pumped my spinal cord up with fluid. (What the fluid was, I cannot recall. My blood, maybe? That coffee they were so fond of?)
Anyway, I must really trust the NIH. Or I must be really curious about what my spinal fluid might reveal. I had a lumbar puncture here a few years ago, and Jamie, the doctor, did an amazing job. I laid low the rest of that day, and walked out unscathed. I’ve got a phone loaded with funny podcasts and I’ve got great new headphones. I’m all set to go. I wonder what this puncture will tell us.

 

Sent from my iPhone

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An Open Fan Letter to Roxane Gay

Since hearing an interview with Roxane Gay on Fresh Air, I have been obsessed with watching or listening to every interview with her that I can find. Her point of view is refreshing and relaxing because she’s not trying to be an example to anyone. She’s just trying to be herself in a body that many in society dismiss at a glance. As a person in a disabled body, I can relate. Nobody cares about disabled people. That point was driven home just yesterday, when Capitol police dragged protesters out of their wheelchairs to jai.

Roxane Gay is a model to me, because she does a better job than I do of giving an honest portrayal of what it is like to live in a body that is not sanctioned by society. As she said to  Trevor Noah,  “I wanted to tell the story of my body, because when you’re fat in the world, people have assumptions….I think it is important to show what it is like to live in this world in a fat body.”

When I replace the word “fat” with the word “disabled’ I see we have the same goal. I am further from my goal than she is from hers. Her achievement shines light on where I need to go.

I am always trying to make my site accessible to people who can’t imagine what it’s like to have MS. I want to be that example of a person trying her hardest every day to overcome. But I’m afraid that in my quest to be a create a palatable persona, I might be neglecting the complexities of living with MS, a debilitating illness that has no cure.

For instance, I was very eager to post the image of myself zip-lining down a volcano in Costa Rica. That moment was a dream come true for me. I’m a person who has a hard time walking. Why wouldn’t I want to fly?

I felt chastened, though, when I came home and someone told me, “I have to show that picture to my son with MS. He would never zipline!”

I hate the idea of my blog existing as a rebuke to people with MS who don’t have the financial resources or the supportive spouse that make my adventures possible. I know what team I’m on. I also know what team would never choose me. (I’m looking at you, Mitch McConnell.)

I’ve been thinking about the images I share on this blog, and on Twitter. My profile picture on Twitter is of me in mid-jump. You might think from this image that I’m a super-athlete. In a way, I am. But that’s just because moving anywhere near normally is a lot harder for me than it is for the able-bodied. My legs can feel very heavy to me, because I can’t control them terribly well. If you’ve ever had to move a full-grown human being whose body is not attached to your central nervous system, you might get the idea. I can be dead weight to myself. So yeah, I often do feel a great deal of accomplishment by merely crossing a room. The closer I get to appearing to move normally, the more I feel I’ve gotten away with something. But this is what I fear: by aping normalcy, I am rejecting the very people whose daily experience I actually share.  Today I am posting a picture of myself not flying, not jumping, but squatting, as I take a break during a jungle hike. You will notice I used walking poles. I myself want more images of people using walking poles out here in cyber-space, so that people like me, who need them, can feel more comfortable about using them to go a little further in this world.

I am very eager to read all of Roxane Gay’s books. I am also eager to try harder to be true to my own experience, which isn’t all transcendence. Let me know when I fall short.

New Neighbors

Didot and BirdAbout a month ago, our dog Didot announced the arrival of the ribbon snake by barking over its coiled body with an almost metronomic regularity. Didot’s commitment to maintaining a steady pace of barking appeared to be in conflict with his desire to attack the snake; occasionally he would break from his stubby legged stance long enough to paw at the creature, who would respond by unspooling upward high enough to provide an elegant pedestal for its own oppositional threat display; a tiny mouth stretched open to reveal a split stiletto of a tongue. The snake’s vulnerability moved me. Before I’d ever owned a dog, I’d owned a ribbon snake, a long-ago gift from my soon-to-be husband. I was well aware that ribbon snakes pose no threat to dog or man, but there was no convincing Didot. I tried coaxing the snake onto a stick, so I could move it out of the yard. The snake wouldn’t budge. I dragged the dog away.

 

That night I complained to my husband about the uselessness of barking at a snake. My husband saw Didot’s barking as perfectly useful; Didot was alerting our pack to a potential danger. I was the one out of sync.

doe

A few weeks ago, a doe started circling our fenced yard. Our dogs adore the doe. Didot’s brother Bembo is particularly fond of her. Doe and dog share the same coloring—tawny bodies, black noses—but there the resemblance ends. Bembo has comically long, floppy ears.

 

The dogs have a special bark for the doe. They throw themselves against the fence and bark for her with abject adulation. The doe appears to enjoy the fuss; she tiptoes back and forth before them along the neighbor’s side of the fence for maximal exposure.

A week ago, Didot spotted her fawn. Up until that point, the doe had been the most magnificent transcendent creature the dogs had ever seen. But something about the fawn—the white spots?—the fresh scent?—compelled those nosy, noisy dogs to admire it in reverent silence.

 

The new life keeps coming. The other day, we heard sounds of distress from a tangle of ivy. Didot, always the first to spot a newcomer, dashed over to discover a bitty bird caught in the vines. He sniffed at it and nuzzled it until finally it dropped out of the ivy and onto the pavement. The bird seemed a little uncertain of its purchase on the ground, and hopped a few times, inexpertly. As Didot approached it again, I heard warning chirps from multiple points. A scarlet cardinal was chirping from the shrubbery uphill from us, a female was chirping from the neighbor’s fence, and then two more female cardinals flew over from neighboring oaks to add to the chorus of concern. I chimed in, “Didot, leave it!” I worried the adult cardinals would want nothing to do with the baby bird if it carried dog scent. I worried the baby bird would get a romantic notion that all big stupid mammals were family. I grabbed our ambassador by his collar and starting pulling him toward the exit. I’d almost gotten him to the gate when Didot’s brother Bembo bounded over to greet the baby bird. While Didot had approached the bird with subtlety and genuine tenderness, Bembo’s approach was more rough-and-tumble. After many ignored commands, “Leave it, leave it,” and futile chirps, I finally managed to drag both brothers out of the yard and away from the baby cardinal.

 

It wasn’t until I’d gotten us all in the house that I considered the location of the true threat to the baby bird—our cat. If the cat had been out in the yard with us as the little cardinal plopped out of the ivy…he would have shred it to feathers. But as it happened, the cat had been snoozing in the corner on a dog bed throughout the whole incident.

 

I tried to coax the cat into wanting to stay inside that day. I changed his litter box. I pet him. I brushed him. I hauled cardboard boxes up from the basement, placing them at inviting angles throughout the house. I presented the cat with an old basket he used to curl up in from back in the days when he was a skinny kitty, perhaps a quarter of his current size and the name Smidge was not ironic.

cat

When it was time for me to take the garbage out, the cat raced me to the front door and sat there expectantly, eager to go outside and play, possibly kill. I hauled him upstairs and re-introduced him to wonders of the attic as a stay-cation destination, then dashed outside with the garbage bag. As I looked around the yard to see if the baby bird was still hopping around on the ground, I was aware of the presence of the adult cardinals, who remained positioned in a semi-circle all along the perimeter. I didn’t see the baby, but figured the adults still considered him in need of monitoring. As I made eye contact with these watchful birds, I felt like I owed it to them to continue to contain the cat inside the house.

 

What to do with a rescue cat? The cat had been homeless, so I gave him a home. Hungry, so I gave him food. Thwarted, so I gave him access to my yard. Oh…that’s just one version of the story. We adopted the cat because we wanted a mouse killer. He hasn’t disappointed in the mouse-killing department. But he didn’t stop killing once the mice were gone. Should we have expected otherwise? Killers will be killers.

 

I kept the cat inside all that day, and all that night. When he woke me at two am, as is his habit, I sprayed him with a squirt gun, something I should have done years ago to defend my right to a night’s sleep, but did that night to earn a few more hours of respite for the baby cardinal.

 

By the next day, we needed relative silence in the house so that my son could conduct some online tutoring; he couldn’t conduct calculus lessons punctuated by a cat meowing by the door. I checked the back yard. The cardinals were no longer on patrol. I saw no sign of the baby bird. Either the baby bird was dead already, or it had learned to fly. I let the cat out.

 

For all I know, the little cardinal is still alive. And so is the fawn. And the doe. And the ribbon snake. The dogs and I are about to make another trip out to yard. We’ll see who shows up.

new neighbor

What’s Wrong With This Picture?

Bad Decision

Yesterday my friend Monica and I went kayaking on the Miami River. When you read, “kayaking,” you might get the impression we were paddling madly. We were not. We were just two women of a certain age, bobbing along on a still lake, dipping our paddles occasionally as we chatted.

Monica and I met at a yoga class for people with MS. We’ve both had MS symptoms for decades. We share the same neurologist, Dr. Z. MS gives us a lot to talk about. I told Monica how much I admired her decision to stay away from MS medications, despite Dr. Z’s recommendation to start one. I think she’s been managing her disease really well. Monica runs her own business. She can hike for miles. She can drive without hand controls. She can put on a sneaker while standing on one foot. If I could do those things, I’d consider myself pretty well cured.

Monica told me she admires me for being brave enough to try experimental medications. I assured her I haven’t been brave, only desperate.

I would be oversimplifying to present us as taking opposite tacks. If you were to draw a Venn diagram of our approaches to MS, you’d find a pretty big overlap in the center. We both do yoga. We both experiment with controlling MS through diet; me in a clinical trial, and Monica in the privacy of her own kitchen. We are both total strivers, still hoping to get healthier, not sicker, as though we weren’t aware we have a degenerative disease. What’s our secret? Delusion, we agreed, laughing. Every day, we push forward, not necessarily ignoring the bad stuff, but not letting that stuff define us either.

When I observed that we’d been under the sun for a while, we paddled over to a shady spot, being the proactive types who wouldn’t ignore the sun and overheat, thereby triggering our MS symptoms.

Monica took a picture of me in my rented kayak, wisely sheltering beneath an overhanging tree. I’d made a good decision, right? Nope. I’d made a bad decision. This morning I’d woken up itching.  Turns out, I’d been nestled in poison oak. I’m not saying I would have been better off heating up in the middle of the lake. But maybe I should have chosen to not shelter quite so deeply in the shade.

Here’s the thing about living with MS in these times: there are many treatment options to choose from, including the option to not medicate. Smart, conscientious people can labor over these options for days, or even years, yet make a choice with grim consequences. When I was a little kid, I used to think I’d eventually recognize the bad option when I saw one. Boy, did I underestimate the complications of this world.

 

Today I’m a Guest Blogger at Solstice Literary Magazine

Solstice, a magazine of diverse voices, added my voice to its choir today. This lovely venue gave my essay a sweet write-up. Follow this link to read my essay about race and disability and love.

Today I got some good news and some bad news. The good news came from my retina specialist, who regards the opinions of the last two doctors I’d spoken with as “outdated” and assures me I can continue to practice yoga and even do inversions without increasing the risk of dislodging my retinas. The bad news came when I arrived, pupils still dilated, for my writing workshop at a senior living facility. I learned that one of the writers had died while I was in Costa Rica. She had died suddenly but died well, in the midst of a bridge game with her lifelong friends. Had our departed author learned in advance the circumstances of her own ending, I think she would have been mostly pleased, but she would have wanted to have finished the novel she’d been working on. Her characters, who had seemed so alive, are  in a kind of purgatory at the moment. I’ve given my workshop the assignment of imagining fit endings for her characters. We will finish her book with our own versions, in our own minds, in her honor.

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Full Speed Ahead on MS Diet

After twelve weeks of anticipation, I finally learned which MS Diet I would be assigned for the duration of the study.

And the winner is…

confidential, at least until I complete the remaining six months of the trial.

I agreed to this stipulation, just as I agreed to injesting certain supplements, to saying yes to certain foods, to saying no to others. A clinical study is a group endeavor. Like any group endeavor, it comes with the perk of getting group support. Observe the above photo, in which I effortlessly glide above the lush tree canopy of the Arenal Volcano. Am I alone in this picture? Only because of how it is framed. A tico named Aaron suited me up, belted me in, and sent me on my way. A tico named Pépé was waiting for me on the other side. And a whole bunch of brave souls I never did meet set this whole contraption up in the first place with some fishing line and moxie.

My husband went ahead of me on the zip line. Unbeknownst to him,  I took some comfort in lighly touching the vibrating line as I watched him glide to the other side. I take no small comfort in having my husband accompany me on this MS adventure. I am grateful, too, for the many friends who have shown support and interest, and to my family of origin, who are all set to eat according to the diet when I fly in to visit them on Sunday. I do not take this challenge on alone.