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.
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.
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!
Yesterday was my fourth Ocrevus infusion. My new infusion center follows a super cautious protocol, which means I was there for five mind- and butt-numbing hours, and emerging was a huge relief. As I cheerfully scooted toward the elevator bank, a young-ish (certainly younger than I) woman emerged with a labored, staccato walk aided by a walker and ankle braces. We smiled at each other as best we could over our masks, and she gestured to my scooter.
“I need one of those!” “It’s made things so much easier. I really recommend it.” “Yeah… “ “See if you can get insurance to pay for it. I’m sorry, er, do you have MS?’” “No, I was shot in the spine. One of the 5% who make it.” “I’m sorry… I just assumed because your braces are similar.” “What do you have?” “Multiple Sclerosis. 18 years now.” “I guess God wasn’t done with either of us yet!” “Guess not. Take care.”
It’s disability pride month, and I have been struggling to make sense of my feelings about it. Am I disabled? Undeniably. But I also devote a lot of time and effort towards being less disabled. My moderate exercise goals of 2 hours of Pilates a week and 1500 steps a day aren’t for funsies. They’re for keeping further disability at bay. I made a huge career move in May that was very nearly eclipsed by my delight at my neurologist announcing that I was stronger than the last time I saw him. I definitely have told more folks about my physical improvement than my expanding coaching business.
After spending so much time celebrating my steps toward being less disabled, celebrating disability pride feels a bit like a lesbian checking herself into a gay conversion camp but then sneaking out to go to As You Are. Hiding her rainbow cake and eating it too.
My exchange with the gunshot survivor gave me some perspective, though. Not the trite, “oh, it could be worse” sort of perspective. Rather, talking to her reminded me that, like it or not, I am part of a tribe. And while I hate every small ability that slips away, I love being on a team with the elderly and the injured and the born-this-ways, exchanging knowing glances and kind words. I love the hell out of continuing to live my life and encouraging others to do so in the face of frustration after frustration. I love that I’ve surrounded myself with brilliant friends who do things like buy a “stair chair” so I can attend parties at their no-bathroom-on-the-main-floor home. I love every time I share a story and someone says “I never thought of it that way.”
So happy disability pride month! Here’s to celebrating amid the messiness and perhaps even celebrating the messiness itself.
Working remotely can be terribly lonely, but it does have advantages. Twelve years into my MS diagnosis and eleven into my dream job managing events at a beautiful library in DC, I quit when even the huge accommodations made for me weren’t enough for me to feel like I was contributing like I wanted. When the opportunity to work at Cultivating Leadership arose, I jumped at it–here was a chance to work in a community of brilliant people scattered across the globe who would never have to see me walk awkwardly across a room or lift an overfull non-sippy cup to my mouth! I’d never worry about asking too much of my coworkers again, because the sort of help I usually require is proximity-dependent. Most of my colleagues know me primarily from the shoulders up, and thanks to genetics and tremor-quelling Botox, I look pretty damn good from the shoulders up.
In the beforetimes, our ever-expanding group of colleagues met twice a year for three days, and I, with each meeting, got better at asking for assistance—sometimes even without my usual preambles of “can I trouble you to” and “I hate to be a bother but”. Our last gathering was in New Zealand in 2020. Neal, my usual travel buddy, wasn’t available, so with some trepidation I decided to go it alone. A friend gave me an upgrade to economy plus, which meant hot towels after take off followed by the unlikely pairing of the movie Good Boys and a glass (a proper glass! on a plane!) of Prosecco. Economy plus didn’t help me sleep on the long journey, but extra attentive flight attendants and leg room went a long way towards easing my body and mind.
With good planning, fastener-free bras, and a lot of help from my friends, I achieved something like independence that week. Sure, I ended up stranded and in tears in my room one morning due to crossed wires about who was rolling me to breakfast, but that was a tiny price to pay for dancing with the people I work with and lying on my back staring at the most glorious night sky I’ve ever seen.
Towards the end of the second day the group did an exercise where you mill around the room and then stop whomever you’re moved to compliment. I announced that I would sit still and flag people down/let them come to me, which allowed me to participate without exhausting myself. It’s a beautiful experience, sharing moments of honest, loving feedback. I soaked it in as people said things like “I’m just amazed by you.” “Your attitude is beautiful.” “You work so hard just to be here.” I’ve heard this sort of feedback before, often in response to this very blog. And I’ve always enjoyed it. So why did I find myself in tears during the debrief?
Each individual compliment felt so good, but, when I went up to the balcony and looked at them as a whole, I saw that almost everyone that spoke to me explicitly mentioned my disability. Those that didn’t still had an undercurrent of perceived bravery and inspiration. And while I balk at those attributes even here in this blog, they make sense. I write about my disease; people respond to my disease. In person, though, I hope that people see more than the wobbles, the hand tremors, and the fatigue. I want my sense of humor to stand on its own, not be seen in the face of hardship. It sometimes feels like people are inspired by me just because I get out of bed in the morning and spend only a small fraction of my time railing at the universe for dealing me a shitty hand.
I coach a young man who has cerebral palsy. He’s fifteen, ambitious as hell, and more committed to enjoying life than anyone I know. I first met him at another work conference where I was struck by his joy on the dance floor. I initially sat on the sidelines, giving in to the occasional shoulder shimmy but otherwise reluctant to do more lest I look less than graceful. This kid’s movements weren’t graceful per se, but he was still a great dancer. Watching him enjoying the music and having a ball inspired me to grab a chair for support and join in.
Afterward I told his dad that I’d never understood others’ calling me inspirational until that night. I felt sheepish saying it. He was just a kid dancing, after all. What is inspiring about that? Still, as someone still finding my way to being my full self within my physical limitations, seeing someone who is also limited be so fully himself gave me the courage to be a new, less bashful me at least for one night.
I have no doubt that every one of my colleagues sees me as much more than my limitations, but it’s a fact that they cannot help but see those limitations when they look at me. Hell, if they didn’t they wouldn’t be seeing me fully. I recently heard a man who is Black and gay observe that he doesn’t want people to focus on his minority statuses but also acknowledges that he is, in fact, a unicorn who brings magic to the party due to his unique perspective and experiences. So I continue to stumble forward living into the paradox of being a regular gal and a unicorn, both mired in and more than my disease and disability.
Dakari, my awesome client, has a YouTube channel that gives you a glimpse into his life. Check it out!
In addition to writing about MS, I sometimes raise money to support organizations that fight it. It’s Walk MS season now, and I welcome gifts of all sizeshere.
I’ve never been the most consistent blogger, but a five month gap is a lot even for me. Thinking back on the time that’s passed I can’t quite figure out how it has happened. Each quantity of time in the pandemic is hazy as days, weeks, months melt into each other like a temporal fondue.
In addition to not writing, I’m not doing most of the “shoulds” that stared me down from to-do lists and habit trackers until my negligence caused even the most persistent app to stop chirping at 9pm to ensure I didn’t forget to write in my journal. Exercise? Barring getting a semi-impressive-for-progressive-MS 1,000 steps a day, I do nothing regularly. Diet? Ha. (The macaroni and cheese I scarfed down last night was homemade, at least.) Reading often is rejected in favor of podcasts, which demand less from my brain and eyes. I recently watched an entire season of an intense Korean zombie show in a week(do subtitles count as reading?), but that’s about it for recent personal accomplishments.
Ugh. Just writing that, I’m ready to settle in for some self-flagellation.
Lazy *crack* Unhealthy *crack* Time-waster *crack* (Bonus points to you if you heard Jesus Christ Superstar as you read the above.)
And the whip-wielder above, while not nice, is not wrong. I shudder to think how much writing I could have done if I hadn’t watched every episode of The Great Pottery Showdown (or worse, Too Hot to Handle).
Luckily tonight was the first session of a course I’m taking in Mindful Self-Compassion. Our small group was welcomed as “beautiful and messed up humans.” We were encouraged to feel whatever we were feeling and to greet even the ickier feelings with curiosity and acceptance. Does this sound woo and squishy? Well, it is those things, but it’s also science.
When asked why I joined the MSC group, I initially thought it was for my coaching clients–and you, dear reader. Spread the wisdom! Spread the self-love! That’s my plan! But really, it’s for me. Each day is death by a thousand “Neal, could you please… ?” cuts. I haven’t a clue what challenges will come in a month or seven. If I am going to survive with my wits and humor intact, I need tools to help me face the ick head-on and accept whatever comes with an “oh hi, there you are” rather than a “what fresh hell is this?!”
My hope is to loosen my grip on the whip. And maybe the remote, too. Just don’t make me put down the mac and cheese. I promise to share what I learn.
As I’ve written before, my immune situation is iffy. Because MS causes my immune system to attack my nerves (hence the plethora of “MS gets on my nerves” merch), medications often interact with the immune system. My last one, Tysabri, prevented immune cells from crossing the blood-brain barrier, keeping my brain safe from new damage for five years. My current one, Ocrevus, suppresses B-cells, which play a role in the immune response. Studies show that because of this, folks on Ocrevus may not be forming antibodies post-vaccination. Other studies say, hey wait, don’t forget T cell response, which might be working fine! It’s all a frustrating mess, because while other folks are frolliclking about carefree post-vaccination, I’m doing constant cost-benefit calculations in my head.
A calculated risk
Y’all, I need me some joy. So I went to a Kesha concert last week with one of my favorite people, and I got a heaping scoop of joy. Glitter cannons! Snarly party anthems! Shirtless dancing boys! All in a concert venue teeming with vaccinated, mostly masked (barring the beer drinking) humans. Being of the less abled sort, I sat in a special section for folks like me with just four of us in the immediate vicinity. Barring the occasional queasy look at the people dancing on the floor level, I felt giddy. Alive. Happy. And safe enough.
Panic after the disco
Last night I received a phone notification that I’d been in contact with someone that tested positive for COVID… on the date of the Kesha concert. I clicked through the DC public health website’s questionnaire. Nope, no symptoms. Sure, I’ve been a touch congested of late, but that’s allergies. Right? Surely it’s allergies. Oh good, this says there’s no need to quarantine or worry.
I slept on it and awoke this morning to the news that a friend on Ocrevus has been feeling rotten and is doing tests to see what’s up. So far he’s negative (yay!) but his text sent my worry powers into overdrive. I have a work meeting in less than 2 weeks where I’ll see people I adore whom I haven’t seen since Feb 2020 AND people I adore whom I haven’t even met yet. There obviously is no good time to have COVID, but this would be an especially bad time for it.
In my morning haze I searched for local testing sites.
No availability No availability No availability
Okay, cool. Home test it is!
Out of stock Out of stock Out of stock
I felt like beating my head against the kitchen counter, and then I found a small local pharmacy that had… appointments! Today!
So now I’m sitting here awaiting 3:10 when I can get swabbed and pricked and know where I stand.
I can and am trying to ground myself in gratitude that I feel fine, which is an excellent sign. I’m also grateful that this is encouraging me to get an antibody test, which I’ve been considering since joining the 3 shot club. Will the results be meaningful given all I said above about B-cells? I don’t know. But the antigen bit will at least put my mind at ease.
A mind at ease-ish
I scootered up to the testing window to have my nostrils violated and finger pricked. By the time I got home, an email awaited.
Yay! No COVID!
Shit. No antibodies.
Am I surprised? Well, no. But there was a tiny piece of me hoping against hope that I’d be the exception. That maybe a few B-cells were hiding out, ready to leap into action when they were needed.
So I continue to calculate risk and find my joy where I can, which is mostly outside while wearing a mask.
Some mornings waking comes hard. Some mornings climbing out of sleep is like slowly pulling myself out of a vat of molasses. Each reach out comes with a slow but irresistible tug back in.
I recently started setting my alarm later in anticipation of molasses mornings. I figure if I am waking up at a time that better suits my body, chances are my body is going to fight me less. This morning I was aroused from my dream-thick slumber by Neal grabbing my legs and shouting, “Good morning Rebecca!” He probably didn’t actually shout, but that is how it felt. I woke in complete confusion, having no idea what day it was, in spite of his next words being “The cleaners are here.”
(Yes, once a month I pay someone to clean our home. This is one of those MS concessions I fought and fought before giving in and loving it.)
I quickly sat up, took my morning pills, made it to the bathroom on un-stretched legs, and catheterized on my first try against the odds. I called for clothes, dressed slowly, and was ready to head out for coffee and pastry, which is my very favorite way to start a day. I know breakfast should be packed with protein and vegetables and good stuff, but nothing brings me joy like a cappuccino and chocolate croissant. These things usually energize me mentally, if not physically, but today it’s just not happening.
When we got home, I eventually made my way to the bathroom and, in a move I have executed successfully many times, pulled my phone out of my back pocket as I prepared to sit on the toilet. However, due to morning cog fog and the exhaustion of being outside in the heat, I promptly dropped my phone into the toilet. The good news is that the phone is water-resistant and I mustered the brain power and dexterity to fish it out quickly.
Why am I telling you this? You already know about MS fatigue. You know that I’m not a morning person. You know I pee a lot. And as much as my charming anecdotes may amuse you, I do try to give each blog post something of a point. The point today is this: unitasking is where it’s at, especially for folks with MS. I spent years of my career touting what a brilliant multitasker I was. And perhaps I indeed was. I don’t know. I have trouble remembering what I had for dinner yesterday, so calling forth what kind of a worker I was when I was 34 is a challenge. But here’s what I know as a 44-year-old–doing one thing at a time helps me in so many ways, and I forget to do it constantly. I regularly get one leg into a pair of jeans only to pause to check my lipstick or my phone. Had I taken a moment to remove my cell phone from my pocket and place it on the bathroom counter before sitting and taking care of business this morning, things would have gone much better.
This transfers to non-euphemistic business, too. If I leap into work without a plan, I am a distracted mess. If I deal with one thing at a time, I’m fairly efficient. And clear headed, which is a rare and beautiful thing. So here are my tips for uni-tasking at work.
Start with a list.
I manage my to-dos with Asana, which allows me to color code tasks and view them in calendar format. (Bonus: it also occasionally awards me with a flying narwhal of completion, which I find weirdly satisfying.) Each work day begins with a scan of existing tasks followed by a review of email where I add things to the day’s list rather than bouncing between email and Asana and the tasks themselves.
Tackle one thing at a time.
Yes, this is the essence of unitasking, but it is nearly impossible as notifications pop up on screen and my brain helpfully butts in with “Don’t forget to post to Linkedin!” while I’m doing client work. I will allow for a pause to add something to Asana, but anything more will derail me.
Social media engagement is often the only thing keeping me from curling up in a ball and surrendering to the self-pity chronic illness can inspire. Each like and comment buoys my spirits, but compulsively checking them makes me distracted and useless. So I keep my phone within reach but face down and DO NOT open Facebook or Twitter when I’m working. (Now Linkedin? There’s a lovely loophole!) I’ve changed my Outlook settings to eliminate the little pop up windows that notify me that a message has just come in from someone I really shouldn’t drop everything to reply to. And if I really, really need to focus, I’ll close Slack.
Tame the tabs.
Remember when internet browsers opened to just one page at a time? How simple life used to be! I’m currently writing in one tab with two coaching-related tabs, my personal email, my calendar, and the fabulous Made in DC shop all open and vying for my attention. Not good, especially when I’m working. Stick with the essentials. For me it’s the calendar, Asana (obvi), and whatever is immediately relevant. Anything else? Shut that shit down.
Keep a notepad handy for personal stuff.
Working a flexible schedule from home means work and life (a false separation but we’ll let that go here) end up in a sloppy relationship. It is far too easy to think “Oh I should send a quick email to Mom” only to get sucked into the vortex of my personal inbox for half an hour and then have to figure out where I left off with work. My personal business notepad is always at the ready to receive my brain’s random firings to ensure I neither forget them nor am I derailed.
It isn’t a perfect system, and I don’t always heed my own advice. I sure do better when I do, though, and I’d love to know what you do to stay focused.
Writing about what MS has done to my nethers and my enjoyment of the sex was pretty raw and took MANY edits. Speaking about it? Yikes! And, truth be told, yay! One just has to take a deep breath, lie back, and think of England. Or, you know, talk to someone in England.
MSers, aging folks, everyone let’s please keep talking about this stuff. Sex is an important part of life and often gets ignored or euphemized into oblivion.
Dom had to remove links because of YouTube policies, but, if you’re orgasm-impaired, please seek out (and use *carefully*) a Hitachi Magic Wand, which is a multi-purpose tool. (Works for cramped calves as well as tenderer bits!) And if you’re curious about free-range, ethically produced porn, search for Make Love, Not Porn. I love their tagline “#realworldsex in all of its glorious, silly, beautiful, messy, reassuring humanness”.