Post Lumbar Puncture Headache

For the last four days, I’ve kept telling myself that I have dodged a bullet. I keep saying, I do not have a spinal headache. By that I mean, I do not have a spinal headache of the epic proportions  I had experienced after my first lumbar punctute, back in 1995. That time, I could not turn my head to the left or to the right without feeling my world lurch from beneath me. That time, I had to stay super-still. The slighest movement would wreck existential havoc on my entire being. In the hours before I was given a lumbar patch, I wanted to die.

This time around, I can move without severe vertigo. I do not want to die. Time to break out the champagne? Not yet.

I’ve come to learn that there are varying degrees of post-lumbar headache. The headache I’ve pooh-poohed for the last four days has not required a lumbar patch, but it has required me to maybe lie still perhaps a bit more than I would like. My husband has been swift to do all the cooking and home management since my return from the NIH, but that has not prevented me from doing silly things, like standing up automatically, instead of slowly. Or responding to a wagging dog tail or a petulant cat yawl by bending down to pet a pet…and feeling instant regret, as that second-rate, not-so-scary post-lumbar headache  grips my skull like a vise.

I find myself creating work-arounds to avoid the headache.  Why bend over to insert a little detergent pellet into the dishwasher when I can clasp it with my toes instead? This is why: the pellet will drop…nowhere near the receptacle. Again. And again. The firm little red pellet embedded in the detergent block will roll away. Well, what a fun dexterity exercise! I’ve read, many times, that it’s useful for brain development to shake things up and do things differently. I tried to frame it this way: perhaps my brain might appreciate the chance to use the toes like the fingers. My brain just throbbed in response. So now I’ll frame this challenge a new way: it is time for me to lie back down, and give my brain and spinal cord a rest.

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.

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.

 

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.

About to Launch

I am about to complete the Phase One, the Usual Diet phase, of the MS Diet study, which compares the efficacy of the Swank Diet with the Wahls Protocol in improving fatigue for people with multiple sclerosis (MS).

My husband and I concluded the Usual Diet Phase by going somewhere unusual. We’d never been to Costa Rica before. We wanted to eat our way through a new country without making any gringo requests for “gluten-free” anything. As it turned out, we ate very healthily there, and could have followed either diet without causing a stir. At one of the bed and breakfasts where we stayed, breakfast consisted of a neighbor’s eggs, seasoned with herbs growing in the kitchen garden, accompanied by juice squeezed fresh from oranges I’d picked myself in the backyard. And the coffee was picked right there in town. Food can’t get more local than that.  Yum! Costa Rica is a much healthier nation than the USA. (More on that in a later post.)

Tomorrow morning, my husband and I will take the seven hour road trip to Iowa City, IA, the site of the Diet Study.  This town has some sentimental value to us; it was here that I went to grad school, here where our only child was born. The hospital hold memories, too. It was here where I worked for the Telemedicine Resource Center, here where I had my first MRI, first lumar puncture, first spinal headache (when the puncture went wrong.) Here was where I got the diagnosis, twenty two years ago, that made me think I’d have less than ten years left outside a wheelchair. I’m still walking. But more slowly than I’d like.

On Wednesday, after my fasting blood is drawn, my food records are handed over, and my motor assessments are taken, my husband and I will meet with the study nutritionist, who will announce which diet we will be expected to adhere to for the next twenty four months. My hope, of course, is that whichever diet we get will reverse my disease course, that this will not be a mere twenty four month change, but the beginning of a lifetime shift. Are my hopes too high? My husband thinks so. He thinks we eat pretty darn healthy already. But he’s open to giving either diet a chance. I am so grateful for that.

The Swank Diet is a low saturated fat diet that eliminates red meat and high fat foods and includes whole grains and fat free dairy products. The Wahls Elimination Diet eliminates all grains, dairy, legumes, eggs, and nightshade vegetables/spices. Both diets include fruits and vegetables and dietary supplements.

Wish us luck!

The Ordinary Woman in the Airport

 

My husband and I were hanging around the welcoming area of CVG, watching for our son amid the parade of newly arrived travelers, when I recognized someone I had never seen before. I recognized her deeply, with every thwarted nerve in my MS racked body.

The woman was ordinary enough; middle age, medium build, medium brown hair cut to a medium length. But her gait…wasn’t quite ordinary.

Don’t get me wrong, the woman was moving about as fast as any of the other newly arrived travelers. But it was clear to me that she was expending about ten times as much effort to do so. Her legs clearly had their own agenda; they wanted to dangle. She was forcing every step; her legs dragged and flopped but ultimately kept flopping in the right direction. And because of that, because she could see she was closing in on the greeting place, she had a big smile on her face—not a forced one—a smile of absolute triumph, like a marathoner approaching a spangled banner.

I recognized myself in her smile; I knew the depth of her achievement. I used to walk that walk, or a version of it, every month on my way home from another clinical trial visit to the NIH (National Institutes of Health) where I would receive another dose of the MS medication now marketed as Zinbryta. This drug has kept me walking, albeit with great effort.

Consider this post my small effort to remind you, gentle reader, that NIH is there for you, finding cures to diseases you may be unaware exist…until one day that disease strikes you, or a family member. Funding for the NIH is in danger right now. And if that doesn’t seem a relevant topic to you right now, congratulations. But good health is transient. You have to work to keep it. And sometimes, despite your best efforts, it slips away.

Please do what you can to maintain your health. Do what you can to maintain the NIH.

Keep smiling; ordinary people can achieve extraordinary things. Just think of that woman in the airport. Here’s the secret behind her smile: sometimes it takes ten times the effort to keep moving forward, but when the goal is in reach, there is ten times the satisfaction.

Steadier Together

As soon as I got diagnosed with multiple sclerosis (MS), I started practicing yoga…with people who did not have MS. Yoga is not a competitive sport, and I am not a competitive person, so I’ve never wasted any energy comparing my abilities to anyone else’s. It didn’t matter if mine was the wobbliest “Tree” pose in the yoga studio. Trees can wobble, in the right wind.

At no point did I feel a need to join a special class for people with multiple sclerosis. I was doing just fine, I thought, in the yoga classes at the Fitness Center, practicing with “beginners” ranging in age from early twenties to mid-seventies. But when I saw the flyer for MS Yoga in my neurologist’s examination room, I immediately decided to join that class, too. The MS Yoga class was free. I had nothing to lose. And besides, I liked the concept. Yoga has helped me, probably in more ways than I know. Wasn’t it nice that the neurologist was offering something positive that his MS patients could do for their bodies and minds? I saw my attendance as a yes vote to the whole idea.

I might have felt a bit apprehensive the morning of the first class…I’d met people with MS before, and most of them just brought me down. The only close friend I’d made with MS up to that point had had a sparkly, positive attitude…and the progressive form of the disease. She’d recently died, hopeful to the end.

The women I met at MS Yoga that morning were charming, charismatic, joyful, and curious. We started asking each other questions, and comparing notes, before Megan, our instructor, got a word in edgewise.

Did I like the class itself? Not at first. It didn’t seem remotely like any form of yoga I’d ever encountered; starting with the fact that Megan never even mentioned breath. To me, a yoga practise without breath is like a church service without prayer; every pose starts with breath, extends with breath, transitions with breath. If you don’t have breath, you don’t have life, and you sure don’t have yoga. But what our class did have, right away, was community; we were as fascinated by each other as if were all reunited siblings, separated at birth.

Our ending “Namaste” (“the light in me greets the light in you) would not be a goodbye. There was a lunch place two stories down from our ad hoc conference room/yoga studio. We all agreed to extend the party through lunch. We called out the high performers as we prepared to leave; “You can still balance on one foot as you put on a sneaker!” And as we went down the stairs, “You can walk without a banister!” We commiserated with the one who forgot her yoga mat and had to go back for it, “I forget things, too!” And the ones who had to rush off to the Ladies Room, “I have an MS bladder, too!” We peppered each other with questions over our salads and soups, universal ones, like, “Do you have any kids/grandkids?” As well as MS related ones, like, “Do you still work?” “Do you get social security?” “Where did you get that cane?”

After subsequent yoga classes, the lunches went on, and the confessions of various disabilities grew bolder; not every symptom was found to have a match. The confessions of memory loss were by far the loneliest; what was the self, without memories?

In the meantime, I grew frustrated with the classes themselves. What was yoga, without breath? When Megan finally told me her reason for withholding breath from the practice, her explanation shocked me. Apparently she’d been taught that handicapped people should not be “burdened” with such instructions. I said, “Everybody breathes.” The assumption that people with MS couldn’t handle breathing made for an insulting pedagogy. She took note. And stopped following it. Megan invited us to breathe in class, invited us to laugh. Classes got better, week by week.

One day, Megan introduced us to the Tree pose, that pose I found so challenging in my able-bodied yoga classes. In Tree, one must balance on one leg, and rest the foot of the opposite leg somewhere on the standing leg; perhaps on the ankle, the inner calf, or as high as the inner thigh. Megan proposed that we do Tree pose in a circle, while supporting our neighbors, palm to palm. This was a method we all could achieve. Instead of forming individual wobbly trees, we formed a steady grove.

As suddenly as the class was offered to us, the class was taken away. The department of Integrative Medicine gave no explanation. The UC neurologist who was involved with this program is seeking to reprise it, to this day.

On the last meeting of the MS Yoga Group, Megan closed with this poem by the Revered Sapphire Rose:

“She Let Go

She let go. Without a thought or a word, she let go.

She let go of the fear.  She let go of the judgments.  She let go of the confluence of opinions swarming around her head.  She let go of the committee of indecision within her.  She let go of all the ‘right’ reasons. Wholly and completely, without hesitation or worry, she just let go.

She didn’t ask anyone for advice. She didn’t read a book on how to let go  She didn’t search the scriptures. She just let go.  She let go of all of the memories that held her back.  She let go of all of the anxiety that kept her from moving forward.  She let go of the planning and all of the calculations about how to do it just right.

She didn’t promise to let go. She didn’t journal about it. She didn’t write the projected date in her Day-Timer. She made no public announcement and put no ad in the paper. She didn’t check the weather report or read her daily horoscope. She just let go.

She didn’t analyze whether she should let go. She didn’t call her friends to discuss the matter. She didn’t do a five-step Spiritual Mind Treatment. She didn’t call the prayer line. She didn’t utter one word. She just let go.

No one was around when it happened. There was no applause or congratulations. No one thanked her or praised her. No one noticed a thing. Like a leaf falling from a tree, she just let go.

There was no effort. There was no struggle. It wasn’t good and it wasn’t bad. It was what it was, and it is just that.

In the space of letting go, she let it all be. A small smile came over her face. A light breeze blew through her. And the sun and the moon shone forevermore.”

We have had to let go of the yoga class, but we have stayed in touch with each other. We are no longer individual w0bbly trees, but a steady grove.