I recently stepped up my Twitter activity in the name of engaging more with people with MS. Sure, a piece of it has to do with wanting more eyes on this here blog, but a lot of it has to do with connecting with the MS community. I avoided associating myself with anyone with MS for years, as if spending time with them would put me on the fast train to disability. Joke’s on me! Being disabled made me crave the contact I had shunned.
Whilst Twittering one morning I saw this:
“THE TIPPING-POINT FOR NON-RECOVERY IS 43 YEARS OF AGE“
Some things worth noting:
- I am 45.
- Gavin Giovannoni is not some alarmist hack. He is one of a handful of people I follow for good MS information.
- A quick review of MS: my immune system attacks the myelin sheath around the nerve cells in my brain and spinal column, which is a bit like stripping the insulation on a wire. Signals don’t get through like they used to, leading to a plethora of symptoms.
- The drugs I’m on (and all current disease-modifiers) are aimed at slowing progression, not repairing damage. Remyelination and recovered function are the big things people with MS hope for.
Reading that tweet was a big gut punch to my softest hope-iest parts. And I was reminded of my favorite polarity. Hope::Reality
“Your favorite what now?” Let me explain. Polarities are “interdependent, yet seemingly opposite, states that must coexist for success.” Here’s a simple one.
Breathing in:: Breathing out
Can’t have one without the other, and, in the case of breathing, you’d quite literally die if you chose just one.
Most polarities aren’t quite so simple. For example, in the workplace, structure :: flexibility is a common tension. Without structure many folks would flounder, but without flexibility you can’t meet evolving customer needs–or the needs of individual employees. Each pole has its benefits as well as its consequences of overuse. And often, we totally miss the downsides when we’re swimming in our preferred pole. (The brilliant folks at Andiron made a fantastic short video explaining polarities better than I ever could.)
At Cultivating Leadership, we teach leaders to recognize and manage polarities to help them thrive in complexity. You know what’s really complex? Living with Multiple Sclerosis. Hallmarks of complexity are unpredictability, non-evident cause-and-effect, and constant change. Check, check, and check! I wake up one day with a spring in my step. The next, I resemble Quasimodo. Working out can energize or exhaust me. A social event with alcohol can make me invincible for the night or collapsed in the corner sipping water in hopes of minimizing how many times someone must walk me to the bathroom. It would be easy to throw my arms up in exasperation and say “screw it, who wants pie?” but I enjoy life a little too much for that. So instead of giving up, I’m taking a look at the system with a polarity map.
As you can likely tell, benefits of each pole go on top. Consequences of overuse go below. I like to think of myself as pretty balanced with this pair’s benefits. On the hope side, I take drugs and supplements in hopes of slowing my progression. I am willing to try most any treatment that isn’t too costly or dangerous. And I keep a fairly sunny disposition. A grounding in reality ensures I don’t chase miracle cures, nor do I do anything dumb like try to walk outside without a mobility device. It also motivated me to leave my job managing events for something less physically demanding (which led to me writing about leadership instead of running around restocking bars when they run out of Pellegrino).
In spite of my relative good cheer, small things can push me into reality’s overuses. Just barely making it to the bathroom on time. Realizing I can’t attend a drag show because the venue has stairs. A tweet from an MS expert about the unlikelihood of repairing damage at the geriatric age of 45. All of these things remind me that some big, sexy doors have closed for me. Probably forever.
Hope and reality resonate for me not just in my internal landscape. So much of the rhetoric online amongst MSers falls on the side of hope. There are constant cries of:
“I have MS but it doesn’t have me!”
“We’ve never been closer to a cure!”*
“This diet will change everything for you!”
These sentiments are lovely (barring the diet bit–that’s rubbish), but they leave out a huge part of what’s actually going on. And I worry that Suzy Sunshining one’s way through means living a less full life. One of the hazards of living in one side of a polarity is that we identify with it so strongly we cannot see the overuse potential.
Of course, the internet is full of Debbie Downers, too.
“Why even bother taking medicine?”
“There’s no hope!”
“I can’t do anything I used to!”
Again, I see the truth here. Especially on exercise days. Still, there is far too much good in the world and my life for me to want to join Team Reality’s downside wallow.
Three months out from the tweet that shook me, I am feeling pretty hope-y. I’m moving well. I even made dinner on my own last night, something I haven’t done in months. I also broke a mug and a handmade bowl recently, which nearly sent me nosediving into reality’s downsides. I am not saying understanding polarities saved my life, but having a map for this constantly present tension does help me notice when I get off course. So here’s to awareness… and pole dancing.
*The really irritating thing about this sentiment is that it’s true whether a cure comes in 5 years or 500!
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.”
“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 sizes here.
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.
(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.
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”.
It’s Disability Pride month, and I’ve been putting off writing, thinking, and doing anything about it. Why? Or, to put it in coaching terms, what barriers are preventing me from taking action?
Denial. And the knowledge that I can’t deny it anymore.
I received the news (confirmation, really) that I had moved from Relapsing-Remitting to the Secondary Progressive stage of MS from a neurologist I’d just met several years ago. I was gobsmacked in spite of a rational corner of my brain whispering, “When exactly was the last time you remitted?” When I spoke to my usual neurologist about it, he waved it away, crying, “Semantics!” And I believed him. Until now.
Now I find myself in a new state. Each small step up (into the house, onto our parking pad) is a struggle. I spent 10 minutes trying to get up off the bedroom floor after a small collapse* recently before giving up and awaiting my knight in shining pajamas. He got me to my feet only to have my legs say “no thank you”. So I was hoisted onto the bed where I lay in an awkward, dejected heap.
These moments happen more and more. My fabulous new purple Rollz rollator moves a little too fast, and I bend at the waist without the core or arm strength to right myself. The muggy heat hits me so hard, I can barely wobble to the car with a cane and an escort, leaving Neal to lift my legs in and close the door. Some days it’s hard to stand long enough just to brush my teeth.
Blame Game & the What-ifs
I spend a lot of time these days cycling between who-can-I-blames and what-ifs.
- My doctors didn’t do their jobs! Why did no one emphasize the importance of exercise from the moment I was diagnosed?
- What if I’d kept up with the workouts LaTasha gave me?
- The pandemic made me weaker! And Neal made me soft! Having him around and insisting on doing things for me has made me less independent.
- What if I’d done my physical therapy exercises regularly since the first time I went?
- I am so damn lazy! If I tried harder, I’d be stronger.
You get the idea. By the end of this cycle I’m angry, weepy, and fantasizing about the time machine that will take me back to when dance classes were possible and making past-me buy a lifetime pass to Joy of Motion. Would it make any difference? Who the fuck knows? I sure would have had fun taking Afro-Brazilian classes, though.
Worst Case. Best Case. Likely Case.
When I’ve exhausted my fretting about the past, I look to the future… what does it hold? Another decade of Neal hauling my ass off the floor before we have to hire a health aide when I’m only 54? More time in a wheelchair? ALL of my time in a wheelchair? And what about my brain?! When will it turn to complete mush? When will I no longer be able to put depressing/inspiring words together to share with the world?
There’s a cool and simple framework for reeling in catastrophic thinking like this that I learned at the Capital Coaches Conference from Dr. Karen Reivich’s keynote address. So here goes.
Worst case: I’m confined to a wheelchair tomorrow.
Best case: My strength and balance improve so that I can walk and do daily activities independently.
Likely case: My slow decline will continue. Slowly.
Purposeful step: Commit to 10 minutes of physical therapy daily.
I’ve wept through writing most of this blog, but typing the above settled me. A small purposeful step can do wonders, and I think this one is doable. Especially now that you’re all my accountability buddies. Email me! Text me! Check in on whether I’ve done the PT.
Finding Some Pride
AmeriDisability has this to say about Disability Pride Month:
“Using bold images and strong words, disability pride awareness dates, parades and festivals both uplift and challenge. Pride comes from celebrating our heritage, disability culture, the unique experiences that we have as people with differing abilities and the contributions that we offer society.”
I have not gone gentle into my disability, and I feel like an asshole whining about the possibility of wheelchair confinement while writing about disability pride. I have at least nailed the “strong words” part of the celebration, and I’m feeling pretty proud of these “unique experiences” and “contributions”:
- Speaking candidly about my life, which I hope allows those with MS to feel less alone and those without MS to see the world a little differently
- Representing the disabled community with good humor while challenging the rest of the world to do better
So happy Disability Pride Month! I’ll be celebrating from my fancy new toilet.
*A collapse = “Oh shit, can’t stand anymore, let’s melt to the floor, shall we?” A fall = “Welp, I guess I’m going down! Protect the face!”