rebeccascott

Side effects, good news, and so much self-criticism.

Confession time: all of this summer’s weakness and fatigue was self-inflicted.

“But Rebecca,” you say, eyes filled with kindness. “Nobody asks for MS! You are doing the best you can with what you have.”

Am I? Was it my best to smoke on and off during lockdown, knowing that smoking is the number one, don’t-do-it-you-moron thing ANYONE can do, never mind someone with MS? Damn you, 2020 Rebecca.

Was it my best to exercise a few weeks and then not? A year and then not? Six weeks and then not? Etc. Damn you, a lifetime of Rebeccas.

To let my activity decline enough that I gained another ten pounds that became unmovable due to fatigue, midlife, and my commitment to not letting MS steal my carbs on top of everything else? Damn you, 2024 Rebecca.

To wait weeks to ask Hers if maybe the weight loss drugs I was trying could be contributing to my weakness and fatigue? To wait another month to complain when I didn’t get a reply?

And, more to the point, was it my best to sign up for those drugs in the first place?

Damn, damn, damn.

Photo by Towfiqu barbhuiya on Unsplash

I’ve written about vanity before, about hoping that when strangers wonder about my limitations they are at least thinking “Why’s that pretty girl on a mobility scooter?” I’ve accepted many age-inappropriate accessories as means to do more in life. A cane but make it cute? I can do that! I’ve done decades of “welp, let’s sort out this fresh hell”, adding catheters and grab bars to my must-pack list. I’ve mourned my grace in movement, now choosing to be awkward instead of stagnant.

Lately, though, even in stillness I do not feel like myself. Years of overcompensating for uncooperative legs has caused a scoliosis so pronounced that repeated self-conscious adjustments cannot prevent me from striking a Quasimodo pose. Each photo I view is evaluated for the evenness of my shoulders and the turn of my head, as I watch for further signs of the twist that has crept into my body.

Finally my judgment-hungry eyes scan down to the not-so-gentle curve of my belly, and I seize on it as something at least theoretically in my control. Now this is self-criticism I can sink my teeth into.

In the midst of all of my physical challenges that I face so bravely (cue swelling music), why the hell can’t I look at the soft flesh that has morphed from tummy to belly in the past five years with love? I’m a feminist. I’m evolved. I know beauty comes in all sizes.

Well, other people’s beauty does.

I don’t judge others for choosing medical assistance to help them feel more like themselves. Hell, I keep a mental list of celebrities who have had stellar work done (I’m looking at you, Carol Burnett), so why on earth should I be ashamed that I sought some assistance? Yet I find myself criticizing me at least as much, if not more than, the folks at Hers that left me hanging for a month in a panic, stealthily researching home health aids in my spare time, wondering if I’d have to cross that bridge before my 50th birthday.

There is good news here in this litany of self-flagellation. (Such a pity I’m not actually a masochist.) When the folks at Hers finally did reply to my side effect inquiry, I got a message of “Oh yes, one of these drugs causes muscle weakness!” followed by “Oh, actually two of them do.” So now I’m off of those medications and feel like I’m improving slowly, bumpily. Great days (no help after getting out of bed! 1000 steps! energy!) are followed by shakier ones. All in all, though, I feel like me again, which feels pretty damn amazing.

Bodies, especially bodies with Multiple Sclerosis, are such good examples of complexity. Sure, sometimes cause and effect are wonderfully clear, as in the case of my recent decline and its resolution. For the most part, though, there are so many variables at play it is impossible to know (even in hindsight) what combination factors caused my disease to progress the way it has. While diet and exercise are undoubtedly helpful, who can say how different my lot might be now if I started Crossfit the moment I received my diagnosis or if I ate my last spaghetti carbonara in 2010? This is a tough diagnosis, and I really do the best I can with what I have most of the time. Yay you, Rebecca!

There is still a mental fridge FILLED with triple decker sandwiches of self judgment begging me to take a bite. The primary one has layers of “hey Tubby!” atop “don’t call yourself Tubby!” atop “don’t police your feelings!”. Luckily, mindful self-compassion has given me tools to experience all of this without a complete meltdown. To say, “Oh hello feelings” instead of “Damn you, Rebecca”. Most of the time.

Almost shameless plug: Want to try this shift out for yourself? Join Mark Rovner and me for six weeks of mindful self-compassion in October. There will be meditation, reflection, and laughter. And 50% off if you use code MSC50.

rebeccascott

Sorry-Grateful: musings on loss of independence (now with random pop culture references!)

This summer has been particularly challenging for me with each new discomfort kicking off another round of my favorite game show “Is this MS? Is this middle age? Is this menopause?” Followed by the unwin-able bonus round “Is this forever???”

brightly colored image from tv game show called Gam Changer
Dropout.tv brings joy to even the toughest days, and this episode of Game Changer is especially hilariously delightful.


As you likely know, I am quite comfortable with the traditional F-word and its variations. Forever scares the fuck out of me, though, when I consider my dwindling independence. For weeks now I’ve needed Neal to help hoist me to a seated position when it’s time to leave my lovely, soft, safe bed. Then he must hoist me to a standing position. On the worst days this is followed by an escort to the toilet not quite 10 feet away from the bed, complete with another poist-pee hoist to stand and bonus under/pants hoisting. (Sexy!) After too many falls en route to the kitchen, I have learned to submit to a wheelchair ride to breakfast as well.

When it’s time to get dressed, sometimes I go into toddler mode, with Neal pulling my arms through my shirt—or, even worse, pulling the whole thing over my head complete with a singsong “Where’s Becca?!” To his credit, he almost always resists this urge. When I feel confident, I attempt the shirt bit myself, either succeeding or getting stuck partway through, which inspires me to shout “I am the great Cornolio!” (Because I am a slave to 90s pop culture.) That’s Neal’s cue to release me.

Cartoon figure with head stuck in his t-shirt head opening
This is a screen grab from the MTV series Beavis & Butthead, which my 10th grade boyfriend *loved*, much to my dismay.

Instead of death by “Neal could you please”, which has become so common I hardly notice it, life is now death by “sorry” and “thank you”, both of which come out of my mouth so automatically it’s often nonsensical.

We’ve found some things that help me function. Keeping the thermostat at a nippy 68 degrees Fahrenheit and having a steady supply of ice water (a necessity for *any* southerner, really) keeps my body in better running order. Why? Well, MS causes the immune system to chow down on the myelin sheath, which insulates the nerves in the central nervous system, causing impulses to go through less smoothly. No bueno. Add heat to the equation, and the impulse conduction gets worse. Even less bueno. So doing things to cool off definitely improves matters.

(Here’s a video from one of my favorite MS rockstars, Dr. Aaron Boster, describing all of the above more eloquently.)

Another thing that has encouraged some of what I’ll call my independ-ish is the new baby in our condo building. No, the one-month-old does not have super strength, but her parents specifically saying, “Please let us know if you need anything,” during a recent visit means that as long as I can army crawl from wherever I am in the condo to unlock the door I do not have to spend the whole day on the floor. And the new parent neighbors reminded me that our other neighbors are former professional cheerleaders. You know who is very good at lifting ladies? FORMER CHEERLEADERS! GOOOOO CONDO!

P.S. Y’all, my neighbors are the kindest. They lift me up *and* refill my water. What more could a girl ask for?
P.P.S. You know, except for a fully functioning body.

I never saw Private Benjamin, but this is what I pictured as I dragged my lower half along the hardwood floor. Sadly, I was not as cute as Goldie Hawn.

REMINDER: I’m now on Substack and tend to post there first and more frequently. It’s free and easy to join. And if you’d rather stay here, that’s okay, too. xo

rebeccascott

Reflections of an MS Activist

March 24, 2025

I am writing from the lobby of the DC Westin during the MS Public Policy Conference, and the first thing you need to know is that I discovered that the two buttons on my blouse had come undone approximately five minutes into this morning’s panel discussion on Medicaid.

Ha-ha! How embarrassing, but good I noticed, right?

Dear reader, I have trouble with the largest, most cooperative buttons. I don’t stand a chance against these wafer thin, slippery little MFs. And while I am not shy, I am not quite up to asking near-strangers to fiddle with my bust. (No matter what you’ve heard about me.) So here I sit, typing with blouse agape, grateful that my clasp-free bra resembles a tank top.

I’m not around people with MS often. Or at all, really. While the internet has given me lots of international pals (hello Dom!), I’m light on local connections. So being in a room full of folks wearing orange, some even using mobility aids, is nearly overwhelming. I fumble at the coffee station, someone swoops in to help. My DC-based counterpart offers her room should I need a rest. My every need isn’t tended to, but it sure is nice neither having to ask nor explain.

Not everyone here is personally afflicted (though most are affected—MS usually requires a personal connection to inspire involvement. I know this, and yet as I look around the room, resisting the urge to count the scooters, I can’t help but wonder how I drew the mobility short straw. As that “why me?” voice creeps in, so does another, harshly whispering, “You know MS is an invisible illness. Would you rather be in constant pain, you ingrate?!” And I wouldn’t. Probably. No, definitely. Right?

Tomorrow my scooter and I head to Capitol Hill to lobby for restored funding for research and Medicaid. Note to self: wear a shirt without buttons.

P.S. Walk MS is weeks away, and I’m raising money again. Donate here if you like. xo

Sexy, no?
Rebecca mirror selfie-ing to show off her polka dots
rebeccascott

The Mundane Middle: In Which I Wonder How To Be Interesting

I cringe every time someone tells me what a good writer I am these days. Friends, I DO NOT shrink from praise. I lap it up like a greedy little piggy. I roll around in it like a hot little piggy desperate of the cool of mud. I squeal for it… okay, that’s too much. But you get the picture. I like praise.

Still, being told I am a good writer makes me want to scream
HOW CAN I BE A GOOD WRITER IF I NEVER FUCKING WRITE?!

I’ve read the books, essays, etc. Writing is a habit. A discipline. Blah blah blah. None of that has helped me step away from my desire for inspiration.

Earlier in the land of blogging I had a list of things I wanted to share about my experience with Multiple Sclerosis.
Diagnosis – check
Mobility aids – check
Sex – check
Tremors – check
And so on.

Now, nearly 21 years into my diagnosis, I am at a loss. Can I render the mundane frustrations and occasional delights interesting enough to be share-worthy? How much enthusiasm can I muster up to detail the resigned humiliation of having to call Neal while he’s en route to work with a request that he double back to hoist me off the floor, undies around my knees? (Fastening a bra properly was once my modern augury for how a day would go. Now all clothing is a struggle.) Is there a lesson there or any amusement to be squeezed from this lemon of a situation? Years ago, Neal would have returned to find me in a puddle of tears. Now I’m just a lump of middle-aged flesh too over it all to do much but sigh.

It’s a fucking bore sloughing off abilities year after year. Honestly, I miss the rage and heartbreak of my first cane, first clumsy attempts at self-catheterizing. I miss the catharsis of bursting into tears when things feel hard yet know that even if I indulged that impulse as regularly as I could I would go through life red-eyed and dehydrated.

I *just* realized that catharsis and catheter must have the same root etymologically,
and that is delightful.

I recently attended a storytelling workshop that encouraged relieving ourselves of the burden of a tidy ending by closing with “and that’s my story.” So here goes…

And that’s my story. (For now.)

P.S. I’ve joined Substack, so if you’re consuming bloggy contact there, please follow me.

rebeccascott

Spreadsheets and Stars – further thoughts on reality and hope

Coaches often are all too familiar with the trials and tribulations of life as a solopreneur. Stepping into the part time work was scary enough when I was on retainer. Stepping into the “eat what I kill” space was terrifying. (Not just because I am still traumatized by Travis Wright bringing a deer leg to show and tell in pre-school!) For my first couple of years of unpredictable income I barely had time to consider what was happening. Money kept coming in through some combination of good work, good networking, and luck, and I managed to earn more than I had in the retainer days. Woo hoo!

I recently entered year three of inconsistent deposits, and I am learning that hope::reality doesn’t just apply to my life with chronic illness. It’s a useful lens to help me think about my approach to securing work and earning money. 

Each year I track my business income and expenses through a document cleverly named “[year] tax”. It is easily my most accessed document, and I look at it approximately ten times a week to remind myself when I can expect my next payment and how well I have to budget what is already in my bank account. This spreadsheet screams REALITY with its neat columns indicating when, how much, and from where my money has/will come.

Reality is:
I need to make X more dollars to equal last year’s income.
I need to make Y dollars total to keep my retirement contributions steady.
I don’t have a fancy advanced degree or a decade of experience, which can limit my options.

There are many other aspects to my reality–from the comfort of a gainfully employed spouse to a very real need for free time to rest and rebuild my body–but when I am leaning hard on this pole I tend to only see dollar signs and closed doors.

When I even consider the word hope, dollar signs become irrelevant. I don’t dream in numbers. I hope I will have more meaningful work in the second half of the year. I really hope to find more clients with chronic illness. I hope the Mindful Self-Compassion course I co-lead has its largest enrollment yet, so more people tame their inner critics. I hope I finally do a Complexity Tools for Folks with MS webinar series. Hope holds my purpose and ambition. And, if I’m really honest, Hope may have some thoughts about my earning potential.

When I focus on reality I don’t dream about the types of work I might do so much as what they will get me. When I focus on hope, I am heart-centered, purpose-full, and dreamy… but things rarely progress beyond the “ooh, wouldn’t that be nice!” stage.

Does anyone else hear a third way coming around the bend–and does it sound oddly like Casey Kasem, late beloved host of the music countdown show American Top 40? From the age of 10 to 14, I listened to Kasem sign off each week with “Keep your feet on the ground and keep reaching for the stars,” and those instructions come echoing back to me as I consider how to thrive in the paradox of hope::reality. 

Keeping my feet on the ground means the 2024 taxes spreadsheet still has a place in my life, just not a daily place. It means knowing what is likely possible today and taking steps to ensure that work keeps coming to me. 

Reaching for the stars means not always limiting myself to what feels likely possible and making space to dream, calling on those grounded feet to take the steps (yes, this is a mixed metaphor, just go with it) necessary to make those dreams happen. Even the financial ones!

As I finish this particular chapter of my polarity musings, I feel better equipped to make good use of the quiet days ahead. Some bookkeeping. Some dreaming. And some dancing. Pole optional. 

***
Postscript

Hope and reality collided for me recently when a colleague needed a partner for a last-minute east coast gig, coincidentally on polarities. 

Reality had thoughts on this:
He has so many other options!
That client doesn’t want your inexperienced ass!
Also, summer travel is so hard on you.

So did Hope:
Girl, YOU KNOW POLARITIES. 
You could bring sparkle to this group.
And if you plan ahead, you can manage heat.

I reached out. The colleague was excited. I was REALLY excited. Then I spent some time in hot weather and realized Reality’s point about heat was very sound. My sparkle and I are staying home.

A brunette white woman wearing large sunglasses smiles while looking out of a train window
Dreaming of good, lucrative work to come.

rebeccascott

How Am I?: In Which I Return to Writing

My MS turned 20 years old in April. Or my awareness of it did, at least. Who knows how long it was simmering beneath the surface, demurely nibbling at my myelin until I finally noticed? I certainly don’t. And neither do the doctors.

If there’s one thing I have learned in the past 20 years, it is that I don’t know so many things. I welcome people asking how I am doing, but I struggle to answer that simple query. 

“Still walking most of the time!” is a frequent go-to and one I deliver cheerfully even as I internally mutter “short distances… with a rollator… if it’s not too hot.”  

“No new lesions!” is another good one. So encouraging, no? It’s been years since there have been new lesions, and their absence is indeed cause for celebration. Still, “no new lesions” lands differently 20 years in when you know your lesion burden (burden!) is, well, burdensome and that you entered the slow decline of smoldering MS years ago. 

I am happy to have reached a stage of life where my mood is not dependent on the numbers on my scale, but I long for the ease of a daily ritual that tells me “here’s how you’re progressing.”

How do I measure how I’m doing now? Step count? Fall count? Tear count?

I am mostly doing okay-ish. My falls are fairly few and nearly always result from carelessness. I recently forgot that shirt removal must be done from a seated position, which led to a tangle, a head bonk, and me collapsed on the floor in the epitome of bad (half) naked. I recently bought something called a bed cane, which is advertised with words like “for elderly”. So that feels amazing. Ego hits aside, it has eased bed entry and exit, which is more win than loss.

I still don’t cook much thanks to stamina issues, as well as heat sensitivity. Occasionally I surprise myself and could likely do that more if I lowered my standards.  

I saw a dear but rarely-seen friend a few weeks ago who said, “I think you look fantastic! No different from last year.” That felt amazing.

Now that temperatures have reached 80+, I feel all 20 of my MS years as I beg my knees to bend, my feet to leave the pavement for the walk from the backdoor to the car. I whisper “This is not forever” to myself, collapsed on my bed clutching a sippy cup of ice water. I then prove it by walking slowly, successfully the forty steps to the couch to watch Below Deck.

My coach and I talked about giving myself the space to be in whatever state this is [gestures awkwardly at self], and we agreed I have three priorities for the summer: rest, rebuilding, and whatever I’ve already committed to. “And a little bit of writing!” I added at the last moment. So here I am, ready to hit publish, end my day at 4pm, and enjoy some reality tv with regret. I can rebuild tomorrow.

P.S. It’s World MS Day! Seemed like a good excuse to write again. It’s also a good excuse to mention that my Walk MS fundraising continues here.

P.P.S. I have a cat now. Her name is Petey.

rebeccascott

Border Control: In Which An Officer Stamps “Denmark” on My Heart

It is a pity that my appetite for and ability to fund international travel has only increased as my mobility has decreased, but such is life. Luckily my appetite for new adventures is impressive enough to compel me forward toward strange borders, even if I do so in a wheelchair laboring over cobblestones.

I could–and perhaps someday should–devote a series of blogs to the frustrations of traveling while disabled. Waiting ages at a gate for someone to push me to my connecting flight. Paying for an aisle seat near the toilet to ensure I can make it there on weak legs. Discovering the only toilets in an initially accessible restaurant are down (or up!) a steep flight of stairs.

There are advantages to disabled travel. Security and immigration lines are shorter. Handicapped bathrooms are usually single serve and cleaner than the group stalls. Sure, my hand tremors mean I’m prone to pouring my cappuccino down my shirtfront, but at least I have a private space in which to clean up.

Writing this I realize just how many of life’s joys and frustrations are toilet-related for me. Yet another topic for another day.

On my recent trip to Denmark, I had two encounters that really stuck with me. The first was when I arrived at the gorgeous Hornbaekhus Hotel where Cultivating Leadership was having its first large gathering in three years. I hauled myself up the stairs at the front entrance, spurred on by the promise of hugging long-unseen colleagues within, then plopped down on a (beautifully upholstered) couch inside to catch my breath. A woman who worked at the hotel sat next to me and essentially said, “This building was not designed with you in mind, and I am sorry. We have an elevator. And there are small ramps I can place in some spots to make it easier. Please tell me what more we can do to help.”

This conversation did not make my travel between rooms at Hornbaekhus easier, but it sure made me feel seen. Much as I love to consider myself to be the center of the world, I know it is unreasonable to expect all spaces–especially older ones–to be fully accessible. I have no problem with this. What I do have a problem with is people not acknowledging that it’s a pity that their spaces cannot accommodate me–and others like me. The simple act of saying, “I’m sorry this is so,” eases things greatly. For me, at least.

The cherry atop this delicious trip occurred as we exited the country. The mustachioed man who stamped my passport said, “I know people like you see things from a different perspective than the rest of us. How did our country do for you?” Never mind that Copenhagen is indeed that most accessible European city I’ve encountered; this simple interaction sealed my love for Denmark forever. How amazing that someone in a bureaucratic role literally involving rubber stamps could really see me and say these words! I don’t even recall how I responded besides feeling the impulse to push through the glass and hug him. I’m a little teary just writing about it.

So many things in work and life are not the way they should be, and we have limited power to make things right. Hiring freezes mean employees are overworked. Limited promotions mean they feel underappreciated. And beautiful, smart young women get degenerative diseases that mean they feel excluded from cool things that happen up/downstairs. It sucks to experience these things, and it sucks to feel helpless to repair them.

Please remember that sometimes simply acknowledging the thing that cannot be changed can make a huge difference.

rebeccascott

Good Job: in which I celebrate some small things

Image by Freepik

Recently I was talking to a client about her interest in learning design software, as well as her feeling that she isn’t doing enough to accomplish everything she wants in life. So I suggested perhaps her first design task should be creating a little 2-D trophy for herself that says “You did it!“ I don’t know whether she’ll follow up on the idea, but it got me thinking about how all of us could better recognize little things we do each day to improve our situation, to get a little healthier, or to make someone else’s life a little better.

Remember when you were a kid, and teachers would put stickers on your work? Even the clumsiest scrawl or the most awkward sentence could warrant a “Good job!“ at the top of the page. And we never questioned it! We were secure in the knowledge that this honor was earned. As adults, it seems we lose this ability to appreciate even the smallest achievements, and I think that’s a pity. We receieve compliments from others with a “Thanks but… “ and recognizing ourselves often doesn’t even occur to us. 

I’ve written before about celebrating all of the victories I have, especially the small ones. Life with MS means lots of frustrations, so each time I complete a meal without sullying my placemat or manage ten minutes of exercise, it is cause for celebration. I know this, yet I still get caught in a should spiral. I should be exercising more. I should have started exercising a decade ago. I should be able to motivate myself without a trainer. All of these shoulds can drown out the dids so easily, making me lose sight of all that I’ve accomplished.

Today I celebrate writing this after a long period of not writing. My successful mascara application. Tackling some to-dos before my morning workshop. Three whole things! Before 10am. What do you celebrate?

P.S. I’m currently the top fundraiser for DC’s Walk MS! (Good job, me!)) If you’re reading this you are already doing plenty to support me, and, if able to donate on top of that, please do.

rebeccascott

Shake It Off: In Which I Reconcile My Inside and Outside

I am generally a good record keeper. As a kid, I always had a wall calendar to keep track of rehearsals, club meetings, and sleepovers. I’ve kept a diary on and off since elementary school, which allows me to go back and read just how mad I was at my mom for EVERYTHING (sorry, Mom!) and how heartbroken I was over Mark, Benji, Joshua, etc. In my college years I created a spreadsheet of all of the boys I kissed with important details like our age difference and whether there was a repeat performance.

What I’ve never kept good track of is my MS. Who wants to end her day reflecting on each eye twitch and bathroom mishap? I can track some milestones through old emails or their coinciding with other unforgettable events (e.g., Nipplegate 04), but so much of the past 18 years of slow decline is hazy. And it’s no wonder. Adult life lacks the clear markers that younger days have. I know my Mark heartbreak occurred sophomore year because I sat next to his new girlfriend in English, but there rarely are context clues for when each of my symptoms first appeared. 

I do have documentation, though. Starting in 2010 my stepdaughter and I made a YouTube cooking show, Gettin’ Saucy with Rebecca Scott, which provides some broad sketches of my decline. 

Hand tremors? There from the start. I quickly figured out that fiddly things like peeling garlic needed to be done off camera.

In 2012 we filmed a Christmas episode that had me in hysterics (the bad kind) over my lumbering walk at the beginning. Did I really look that lop-sided? Was that what Neal, Charlotte… OMG, my coworkers saw every day? Watching it now, I see myself as a caneless badass, but at the time I saw a sad, crippled woman. I didn’t *feel* sad or particularly crippled until I saw myself as the world did. I was shaken.

So I stopped walking on camera, which meant I could stop thinking about my evolving body and my rapidly spiraling sense of self. Crisis averted. Phew.

Then, two years later, I lost all interest in filming after our Super Bowl episode. Neal and I open it doing commentator schtick–blazers, hands folded on a ”desk”, overly serious. As usual, Neal eclipses me (this is why he only appears rarely on the show), but I hardly noticed. I was too busy being horrified by how much my head was shaking. I knew it shook sometimes, but who was this palsied young(ish) woman? And OH MY GOD IS THIS HOW PEOPLE SEE ME NOW? 

I brought this to the attention of my then-neurologist Dr. Mora, who sent me to Dr. Bahroo, a movement specialist. At my first visit I learned that most people with MS have a yes/nodding sort of tremor, which is rhythmic. Mine is a no/right-to-left tremor and jerky, which means something else is going on. Dr. Bahroo filmed me and then played it back so I could see how my head was both rotated and tilted, which is how my cervical dystonia manifests itself. The tremor results from muscles on opposite sides of my neck and shoulders playing tug-of-war. 

Here’s the video from my first appointment with Dr. Bahroo.

Yikes, right? I had been in my job for nearly a decade at that point, and my body was already whispering “psst, your on-your-feet event days are numbered.” Watching the video back, I remember thinking, “There is no way in hell I can present myself like this in an interview!” Never mind that this was already how clients, coworkers, and family saw me.

Something had to be done, and Dr. Bahroo was the man to do it. We made an appointment for Botox injections in my sternocleidomastoid, splenius capitus, levator scapulae, and trapezius muscles. It was painful but by no means unbearable, totally worth it for the promise of a steadier head.

Here’s the video from 12 weeks after the injection.

Improvement! Wow. I was stunned. And hooked.

I now get Botox in my neck (and legs–a story for another day) every twelve weeks.

While this tale of tremors has a happy ending, it has me thinking about how jarring it is whenever we (MS afflicted or not) learn that our insides and outsides are mismatched. We find that first gray hair, which is followed by countless others. Our jeans don’t zip with the ease they used to. Our phone camera opens to selfie mode unexpectedly and we wonder who that tired old person is. Inside I am still the sassy slim 31-year-old who could leap up to shake it on the dance floor the moment Miley utters “I’ve got my sights set on you.” Outside? Well, if I can get to the dance floor, there will be shaking, but it’s unlikely to be intentional. 

Life, like MS, is a degenerative disease. And if we want to live fully as the years wear on, we have to find ways to accept our changing bodies with minimal dis-ease. That may  mean splurging on a sassy purple rollator and some fancy canes to make sure the world knows you’re stylish in addition to gimpy. Or throwing out those dresses that barely zip and buying one that makes you feel FABULOUS.

Me, I’m distracting from my greys with some fuschia. The sassy slim Rebecca inside me wholeheartedly approves.

rebeccascott

Medicating myself with good choices: In which I muse on energy

My word for the year is energy.

I think about energy a lot. Fatigue is perhaps the most common and disruptive symptom of Multiple Sclerosis, and, after 18 years of stumbling through life with MS, I’ve realized I can influence my energy levels through purposeful actions. 

Some of these don’t come easily for me, like swapping overnight oats for delicious, sugary muffins. And exercising. Regularly. (Ugh.)

Some are lovely, like getting lots of sleep and reenergizing with afternoon Yoga Nidra. 

And some are unexpected but super effective, like getting out of the damn house and spending time with people I love.

Over the past month I’ve realized nearly every choice I make from the clients I serve to the shade of lipstick I wear can be viewed through the lens of energy. So here’s how I intend to stay energized in 2023:

More vegetables
More writing
More coaching*
More coffees, dinner parties, and unplanned calls**
More engagement with the MS community
And, yes, more exercise

What keeps your fire burning?


*If you’d like to help with this item, I am accepting clients.
**If you’d like to help with this item, I am accepting invitations!