Community Potluck

A few months back, my family and I were eating really crazy delicious food at a local café. When we learned the cook was a Syrian refugee, I wanted to know more about her story, starting with: how did you make this food taste so good.? I started to wonder what it must be like to be a refugee, and then I started to wonder why there are so few opportunities to really get to know my neighbors. So I turned to my local Cultural Arts Center, and asked them if they wanted to do something cultural. We checked out the Refugees Welcome to Dinner Project. Clifton Cultural Arts Center took it from there.

Clifton Cultural Arts Center will be holding a free potuck dinner for members of our community, old and new (and middle-aged like me)  from 6-8 pm on October 19. I am so glad we will all get the opportunity to share a meal together.

And yes, my contribution to the potluck will align with my MS Diet. No cheating!

What Would Lisa Do?

When I enrolled in a study comparing the efficacy of the Wahls Diet to the Swank Diet in reducing fatigue in MS patients, I agreed to the following:

Item 1: I would hold off on any food not on my randomly assigned diet, while documenting every meal and morsel that passed through my lips. (And every bowel movement that passed elsewhere. Note how I choose to modestly tuck this admission into parenthesis, as though to hide it.)

Item 2: I would hold off on making any changes beyond the diet: no new exercise routines, no new medications, no new supplements. (This element worried me from the start. To have multiple sclerosis is to be on constant alert as to what works, and what hurts, and to adjust accordingly.)

Item 3: I would hold off on writing about the study until after my participation was complete. (I was told: “You can still take notes.” This riled me. How dare anyone presume I would grant them the power to prevent my taking notes? Still, I’ve held off on blogging about the study. Until now.)

As the study continued, I’ve been ceaselessly repeating my end date to myself like a convict scratching out roman numerals on a cell wall: November 14, November 14, X1 X1V.

It’s not that I’ve been worried about my ability to stick with an MS diet. I have all the motivation imaginable: I have zero desire to feed the disease that has riddled me with suffering.

At this very moment, I am sitting in a lovely urban café with my gorgeous husband, pristine sunlight streaming through the floor to ceiling windows, mellow trumpet streaming through overheard snippets of conversation about…a study on epilepsy (disease is ever present in our culture.) My husband’s almond croissant looks esthetically appealing, but it does not spark my appetite. It might as well be a croissant in an oil painting.

It occurs to me that growing up poor may have primed my willpower. I have always divided the temptations of this world into that which I can afford, and that which I cannot. As I have always been able to afford library books, hugs, conversation, trees, and sky, I have never felt privation while all sorts of shiny things— luxury cars, diamonds—sparkle out of focus as they pass me by. To be on an MS diet is to acknowledge that I cannot afford an almond croissant. But as it happens, I haven’t felt privation. I have a neighborhood grocery store around the corner full of fresh, healthy food—and a husband who is an amazing cook, capable of spinning delicious meals out of any assortment of options. (I’m a capable cook, myself. Just not a brilliant one, like he is.) Holding off food outside the diet has not been difficult; it’s been like holding off on invitations to disease. Easy scheamsy.

So much for Item 1.

I had thought, (too optimistically, in retrospect) that because I have an iron will, because I would follow any MS diet I was given to the letter, I would be rewarded with a respite from disease. This has not been the case. I’m not saying the sacrifices I’ve made in my diet have not been necessary—I believe they are. I am saying they have not been sufficient. The fact is, my diet before the study wasn’t all that different. Or at any rate, not different enough for me to experience any last life changes.

While an MRI I got from the NIH this spring did not reveal any new lesions…I was informed by voicemail that the game has changed. I am no longer being categorized as relapsing/remitting, but as secondary progressive. The damage in this phase of the disease process is more subtle that any lesion glowing on an MRI. But I can feel it.

Adhering to Item 2—holding off on changes to exercise, medication, and supplements—has meant continuing to allow my condition to further degenerate. And yet…I held off on any changes, as agreed, for weeks and weeks and weeks. I continued to make my healthy food choices. I filled in the bubbles in my diet record. I swallowed my assigned supplements. And I ceaselessly reminded myself I would be free to try something new on November 14, November 14, X1 1V.

All the while, there has been this one supplement I’ve been drawn to in particular: Biotin. There had been a promising study in France, which showed 300MG of Biotin daily had reversed symptoms in people with progressive forms of MS. Since starting the diet study, I’d joined an online group of people following the diet to which I was assigned. Many of them had started taking 300MG Biotin, and their first-hand reports of symptom reversal kept showing up on my feed. In my mind, Biotin was becoming something I could not afford—to be without. I mentioned this at my neurology appointment last week, and was in shock when the vivacious newcomer to my healthcare team handed me a prescription. Hadn’t she heard I couldn’t take a new medication until November? Maybe she thought—maybe I should think—I could not afford to wait.

In retrospect, my continued indecision seems almost comical. I talked to my husband. I talked to my mother. I texted a sister. I felt it would be wrong to drop out of the study. The investigators had invested so much. I’d invested so much. Over the years, participating in clinical trials has become my identity. Or one of my identities. I was Ms. Lab Rat, wasn’t I? Who was Ms. Lab Rat to jump out of the maze?

But losing my alter-ego was the least of my concerns—my health was at stake. My health had to take priority. Which was why I’d become a Lab Rat in the first place.

One of my interlocutors suggested that I just take the 300MG Biotin, and not report it. That would be easy enough. I’d learned, through the Biotin grapevine, that if one held off ten days before bloodwork, the supplement would not be detected. This option did not appeal to me. What was the point of doing any study if it didn’t give real people with real MS real answers? If I didn’t report honestly, I’d be negating all the work I had done so far. The study would be worth nothing.

A friend of mine tells me that, when faced with a difficult decision, she asks herself, What Would Lisa Do?

I tried to imagine myself as the sage friend she sees in me. I asked myself, if our situations were reversed, what council I would give her? What Would Lisa Do?

Lisa wouldn’t hesitate to tell her to drop the study and do whatever she thought she needed to do to take care of herself.

But did I drop the study? Not so fast. I wondered if there was maybe a way I could stay in the study and take care of myself. One of the advertised perks of being in the study is that you have access to a dietician. I emailed the dietition, asking for a pep talk. “This diet is not working for me.”

It wasn’t just the diet that wasn’t working. Zinbryta, the drug that radically improved my quality of life for over ten years, now seemed to be responsible for my having a decreased ability to heal. (I have had the same skinned knee for four and a half months. It’s kind of eerie.)

I wrote, “I need to get more assertive in my treatment, and just can’t wait until November 11 … To stay in place is to decline, and I just can’t continue to harm myself in this way.”

Since the dietician has had access to my food records, I was hoping she might be able to detect some tactical error I’d been making, and would write back with a suggestion of some simple dietary change I could make that would change everything. Something like: replace soymilk with cashew milk and you will live healthily ever after.

That didn’t happen.

So when the dietician called on Friday, I announced, “It’s with a heavy heart that I have to give up this study. I’ve been given a prescription for high dose Biotin, and I’ve decided it wouldn’t be right to delay getting it filled.”

Unbeknownst to me, my announcement contained a magic word.

“Prescription.”

If I’d been paying more attention to our agreement, I would have remembered that the study does allows one to make modifications to medications or supplements…prescribed by a physician.

I could, in fact, take my Biotin and continue on the study diet, too.

Back when I was discussing my conundrum with my mother, she’d said, “You are just like me. You care too much about pleasing other people and about being a good girl.”

Then there had been a long pause. We both knew, from a lifetime of experience, that I have never cared a whit about being pleasing other people or about being a good girl.

Here’s the latest proof: in writing this blog post, I have violated Item 3. I have not held off on writing about the diet study.

And now, I am excited to announce that I am launching my own study. On my own terms. I will try out 300 MG Biotin per day. And I will write about it as much as I please.

 

 

 

Doctor’s Note

catncouchMy doctor’s notes of yore were full of warmth, “Thank you for sending me your delightful patient…”

Earlier this week, I caught a glance of a recent doctor’s note from the NIH: “The patient is normal in behavior and appearance.”

What’s changed about this patient in the past twenty years?

I have come to consider even weak praise a win.

My sister recently described my MS as “a slow motion hurricane.” I am still waiting for my CNN interview.

Meanwhile, Hurricane Irma wends her inexorable way North. She has leveled an island I’ve never heard of…not Bermuda but another island with a name beginning with a B. By the time Irma reaches Cincinnati, she will have spent the bulk of her wrath on leveling Miami, and will toss us a mere drizzle. Again, no CNN interview!

My husband and I are in full drizzle-preparedness mode. This morning, I shampooed with Living Proof’s humidity shield shampoo, conditioned my hair with Living Proof humidity shield conditioner, and sprayed my hair with Living Proof humidity shield hair spray. My husband’s water resistant LLBean Duck Boots and my school bus yellow waterproof Converses are at the ready, should the impending drizzle accumulate on the Cincinnati sidewalks. Sadly, our pets are wearing personalized LLBean pet collars with my name and contact information, minimizing the chance of their becoming displaced. My husband has checked the gasoline levels in our Honda Civic, in case we must flee the incoming Floridians. Our Civic has half a tank. As our Civic is a Hybrid, that should be sufficient.

IMG_8605

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

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