My mind likes change. My body? Not so much.

body of worth tagI woke up this morning at 3:30am—Saturday, November 7, 2020—in pain.


This isn’t the hug I need

It’s called girdle band sensation. What they also refer to (sarcastically) as the MS hug.

First, I followed a lifelong impulse and did adaptive yoga. Child’s pose (and modifications, because even this easy pose can be difficult when your core muscles are in full-on spasm). Then cat and cow stretches, followed by the standing poses in the sun salutation. I used my dresser and footboard on my bed as a kind of barre to perform standing stretches and arabesques to release my hips.


Thirty minutes later, I’m making my way into the kitchen for a dose of baclofen chased by four Advil. Of course, this doesn’t give me immediate relief. I go back to bed but cannot find a proper position. This is part of the hug that I hate the most. It doesn’t go away, no matter what position you take. Sitting, reclining, standing… I try to use all my pillows to bolster myself into a comfortable posture, but nope.

I break out the TENS unit, place it on opposite sides of my rib cage, commence shooting little zaps of electricity into those muscles of breathing that seize up during an attack. This helps a tiny bit. I follow up with more stretching and yoga: dolphin, chair, and thunderbolt poses, then spinal twists, more cat and cow, and thread the needle.

I make my bed. Reclining is useless but I feel the need to keep moving. The house is cold, my joints are cold, having arthritis together with MS is brutal in the winter. My feet are numb at this point.

I move the TENS pads to the top end of my thoracic spine, use a wall for support while I sit in half-lotus.

Then I get out my phone.

Not a great move, but in the dark, when you’re wide awake with pain and the future of the free world is still hanging in the balance, that’s not a surprising place to go.

I’m no stranger to change

I grew up in a household where moving to a new town and a new house was on the regular. I’d lived in 12 homes by the time I was aged 12 (in fact, at age 12, we moved back into a house we’d moved from when I was ten).

No, I’m not an army brat. My dad has emotional and mental health problems he refuses to identify and treat, and this means he spent his life switching jobs because he has just never been good at playing well with others.

(Rest assured, this is a ridiculously generous rendering of the truth. He’s mad in much the same way Trump is mad. And like Trump, he’s gotten away with it his whole life.)

So I was raised in a constantly changing landscape. I have life skills here even if they came at the price of certain aspects of my childhood.

The roots of resistance have always been about change

When Trump became president, I was hungover from sleep deprivation in Boston the morning after Hillary conceded.

I was attending a marketing convention during election week 2016, and the person I was attending the convention with wasn’t a Hillary supporter, so I was pretty much on my own.

Ironically, I’d purchased small copies of both the Declaration of Independence and the Bill of Rights from the gift shop at the Old North Church the day before, super psyched to have my daughters’ first presidential vote be for a woman.

That horrible Day After, I walked around in a punch-drunk and weepy daze. It was almost impossible to read the faces of strangers in Boston, and I wasn’t about to be cut down at the knees by Trump supporters.

I immediately began to use resister hashtags (#resist, #resister, #resistor, #FBR,  etc), finding comfort mostly in the responses of people in social media who vowed then (and continue to vow now) to never stop fighting to remove this turd from office.

Listening to Alec Baldwin at the keynote later that week was only slightly comforting. (Start at 9:54 for some inspiration).

After the convention, I advanced to another destination, this time Charleston, where I presented on a sleep topic for an international audience.

During my stay there, I took the ferry out to the island of Fort Sumter, feeling the beginnings of what clearly has become a deep divide in America.

During the discussion of the flag flown at the Fort Sumter museum (yes, it still exists, and it’s huge!), a white male Trump supporter with a southern drawl praised the value of the confederate flag and asked why it wasn’t being discussed or displayed. That silenced the room immediately.

His assumptions were roundly corrected by the curator, who reminded him before the full house of tourists from the US and abroad, that it had never been an official flag for any army and has always been a symbol of hate. It had been taken down from the Fort Sumter monument in 2015 in order to clarify this reality.

I was the third wheel to a Jewish couple from Manhattan also on that tour, and we exchanged knowing glances, having already shared stories about marchers across the country, equally worried for our own college-aged daughters and what this new president (#notmypresident was also a hashtag by then) would mean for them.

For me, too, for that matter. By the time Charlottesville happened in August 2017, I’d all but called the future of the US doomed.

“We’re done as a nation,” I told M then. He thought I was being dramatic until it became obvious to him and millions of others suddenly “woke” to certain realities that this was no shallow soap opera.

This was (and still is) real.

Obama leftovers are still tasty: “Be the change you want to see in the world”

So yes, I’ve been watching the election results this whole week with a certain kind of intellectual relish.

I never really felt the gloom and despair that others felt on November 4th. I knew about the concept of the Red Mirage. I knew it would take longer than normal. I knew there would be pushback from Trump when states he gained in 2016 turned blue this year.

I posted encouraging memes, though I was shot down by doomscrollers in Facebook who accused me of practicing “positive toxicity” when I said, just wait for it, count the votes, change will come, counseling them to have an emotional plan B in the event the election dragged on. (PS, I still stand by this statement: being optimistic isn’t the same as positive toxicity; people unable to practice even the tiniest bit of optimism should really work on themselves. There’s always hope. Always.)

And here’s a reality check I accepted weeks before the election (yes, I’m looking at you, doomscrollers):

Even now, we know the divisiveness of DJT&Co will drag on, we really won’t have confirmation free and clear until December 14, 2020, when the electoral college certifies Biden as the winner. There’ll be civil unrest, and we need to be prepared for that.

This doesn’t mean I’m pessimistic, it means I’m optimistic that we’ll get through this transition as long as we acknowledge the road will be bumpy even weeks from now.

Get a plan B, people, get a plan B.

I only really lost sleep on Thursday night, in a kind of unrelenting anticipation when I let the returns play all night from CNN in my bedroom.

(I know, bad sleep hygiene.)  One President Out, Another In: You Don't Just Hire 2 Guys With a Truck - The New York Times

At 1:30am Friday I learned Georgia was flushing blue, and when I woke up a few hours later, Pennsylvania returns had flip-flopped in meaningful numbers in Biden’s favor. So that wasn’t, by itself, a bad thing. It buoyed me.

I had an appointment at 9am yesterday (Friday), and I kept the car tuned to news radio, afraid to miss any news. I found myself dancing in my driver’s seat, cheering randomly, feeling like the blue wave was actually a blue tsunami, that the pause of the flood had happened earlier in the week and now the votes were roaring in, as expected.

At my appointment, I danced in the lobby, doing my best Kamala soft shoe, and chatter about the election was positive and exciting. (There’ll be black Chucks to wear in my near future.) I laughed at the Snopes-confirmed image of a moving truck in front of the White House, even if it wasn’t there to move Trump out.

It felt like, even without the electoral college, this race was won and done.

I stopped by the store on the way home, listened for more news, though there was none. I looked at people and they seemed to be reserved, no signs of hope, but no signs of loss, either. Meanwhile, I wanted to dance!

A friend of mine had recently moved nearby and I had a general idea of where they lived, so I drove through their neighborhood looking for their Biden sign. I wanted to dance! I found several Biden signs but, listening to news radio, there was yet no indication of a projected winner, with that electoral college vote total still stuck at 253 or 264, depending upon who was counting. I went home after that, still dancing inside my head, awaiting the big change.

No news meant I got my work done by mid-afternoon, and I took the rest of the day off and watched CNN and MSNBC for some sort of confirmation. Waiting for the change. Wanting the change, ready to embrace it, to give it one big hug. To be the change I wanted to see in the world.

We ate Philly cheesesteaks for dinner as an act of solidarity with my pals in Pennsylvania.

We watched a movie, missed the Biden address that expressed confidence in the change to come.

I went to bed wistful for the declaration of a new president.

I finished a book I was reading which had a dramatic climax that seemed so appropriate that I couldn’t imagine the timing of my reading it wasn’t somehow prescient. Floods to cleanse a broken landscape. The desire for change can be so seductive in this way.

The body is not the mind

At around 5:30am this morning, I finally check in to Twitter, the pain of girdle band sensation finally showing a response to all those therapies.

Sitting half-lotus in the dark, I check the AP live election results page.


Almost all the votes are in for three of the four states needed to flip the presidency blue. But nothing.

I scour the Internet for some sign that this will change. I read about Proud Boy stabbings and Trump’s frivolous lawsuits, about Alex Jones in Arizona riling up MAGAts, about Steve Bannon calling for a beheading, about the absurdity of #StopTheSteal.

Change is hard for anyone. It’s going to be hard for Trump supporters who aren’t prepared to lose (and lose “bigly”). But I begin to feel like it’s going to be hard for everyone if we don’t relieve ourselves of this limbo. If PA and GA are 99 percent accounted for, why is there no projection for a win in either state? Are media agencies afraid of what that might signal? Because the Trumpers are going to have a fit no matter who wins. But if there’s no resolution soon, so will the Blue Wave.

I tweet at 6:45am from my political handle, @Firetender1:

I hit “Post,” wondering: Maybe I’m losing my sh*t, too. Maybe I’m not so great with change after all.

But then again, maybe the pain in my girth and the disrupted sleep inspire these tweets.

I feel terrible. My stomach roils, I think I’m going to vomit because of the compression in my ribcage.

Or maybe even someone like me, with a penchant for change, has had enough of living in limbo.

After this, I begin to feel sleepy (no doubt from the baclofen). I unmake my bed, leave the TENS patches on to buzz my back, crawl in, bolster myself into the warmest, most comfortable position I can muster, and fall asleep.

When I awake, it’s 10:20am.

I come out to find M watching TV. I have yet to check my phone and presume that because he’s watching the ZZ Top documentary on Netflix, nothing has changed. I tell him about my MS pain ordeal.

Then he tells me Biden has won.

Taking MS pain for the team?

Six hours later, following another round of my trusty baclofen/Advil shield, I’m still sitting here at my computer, still in a bit of pain, yet awash in the relief of change come to roost.

Finally, not only is the election over, but the limbo has been lifted.

MS takes on a life of its own during times of stress. Even if I’m open to big change, this is only manifest in my intellect. My body has meanwhile taken some hits this week. Poor diet, little exercise, disrupted sleep, and a sense of uncertainty that, while managed intellectually, still seeps into my joints, my muscles, all the places where stress hormones release like a flood. Even if emotionally I felt way more positive, confident, and even a bit relieved earlier this week, that the process was falling into place just as many had predicted, my body still revolted, and now I’m dealing with the pain of MS.

I’ve said it before, and I’ll say it again: It’s impossible to avoid stress, because life is stress.

I live a lot inside my head, it’s an unmistakable survival mechanism many lean upon when facing life with chronic pain. But at some point, the body can only endure so much. Mine called it quits last night, at about 3:30am, and the result is that I slept through the projection for Biden.

Am I sad? Not in the least!

This is the change I was hoping for, the change that will lead to days where I won’t be waking up wondering “what fresh hell is this?” That bodes well not only for my intellect but for my body.

It sucks to have to deal with this MS spasm in this historic and desperately wished-for moment, but on the other hand, I think of it as my body taking one for the team.

We’re meeting up with neighbors afternoon to celebrate, and pain or not, I’ll be there with bells on… this time to dance inside my whole body, because even if I have MS, even if I’m having some unpleasant symptoms, my body can still feel joy.

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