Joy in the Time of COVID: In Which Calculated Risks Are Taken

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.

Rebecca and her friend smiling in their private seating area
So happy!

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.

And yet.

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

Shit.

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.

Antibody type? Elusive.

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.

Hurrah for Unitasking: In Which Tips Are Shared

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.

Breakfast of champions!

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.

celebration
How cute is she?!

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.

Limit notifications.

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.

Disney Up! Squirrel! | Disney best friends, Hunger games, Dug the dog

Sex and MS: In Which I Talk About Sex (Baby)

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.

Yes, those are jazz hands. I gotta be me.

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”.

Disability… Pride?: In Which I Whine, Share a Tool, and Find Some Pride

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.

Facing Reality

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.

Here she is… Ms. Disability Month!

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 raised toilet seat?! WITH grab bars?! You shouldn’t have!


*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!”

OKAY, OKAY UNIVERSE: In Which I Am Forced To Examine My Limiting Beliefs

I’m not a particularly spiritual person, but sometimes one has to acknowledge the signs.

Yesterday morning I read a bit of Choose Your Stories, Change Your Life by John Sautelle in preparation for a class starting Wednesday, and I was reminded that the stories we tell ourselves (often based on the stories told to/about us) can shape how we move through the world. If we look deep within ourselves to examine those stories, we can then make choices about their truth and, indeed, change our lives. “Oh right, yes,” I thought. “We talked about that in coaching school. Good stuff.”

A while later I watched Sope Agbelusi‘s video about clients that say “I’m too old to change” and the role of fear in that statement. When we make bold and limiting pronouncements about ourselves, we can remain safe and comfortable behind them. Sope’s video ends with “What areas in your life are you making excuses for now?” I gave it a thumbs up and commented, “If I’m feeling bold later, I *might* consider what I’m making excuses for. Maybe.”

That afternoon, not satisfied with 15 minutes of Yoga Nidra from Insight Timer, I turned on Day 3 of “Build Energetic Boundaries for Healing and Protection” (hey, I’m not spiritual, but I am a bit woo) and was dumbstruck when the cheerfully calm voice in my earbuds instructed me to get out some paper and write down beliefs I carry that don’t serve me. I gave the universe the side eye while grabbing my pen. At first the sentences started stilted and familiar (“Capable people don’t ask for help”) but by the bottom of the page this came out.

I have not lived up to my potential.

I will never live up to my potential.

My body is a lost cause.

I will never be whole again.

Yeeesh! I just wanted another 10 minutes of peace and instead the universe and my subconscious delivered that steaming pile of dear-god-what-do-I-do-with-this?! I cried a little, turned the journal over, and walked away.

Alas, one cannot really walk away from revelations like that, and they’ve been echoing in my head ever since. As a grown up starting a new career in her mid-forties, I am generally delighted by the twists and turns my life has taken, but there is a haughty little 18-year-old inside me who is at the top of her class, running three clubs, and rehearsing a play, and she is certain that I should at least have a Master’s degree and written a book by now. “What have you done with our potential?” she moans. “We’re so far behind!” So I drag my heels on assembling the paperwork on my coaching certification. I decide to update my website next week (no, next week… and so on). I answer queries about business development with a shrug, because why bother? I am never going to live up to that glorious 1995 potential.

Then there are the other two bombshells. Life with Multiple Sclerosis is a delicate balance of hope and reality. Each time I awkwardly lower myself onto the Pilates mat it is with hope in my heart that my moderate exertion will make me stronger. When I zoom out and consider that years of moderate exertions have made no noticeable improvement, that I didn’t make it through even a day last week without needing help getting up off the floor post-fall… well, it’s hard not say fuck Pilates and curl up with a bag of Cheetos and a big glass of “My body is a lost cause.” (And wine, of course.)

I’ll be honest. “I’ll never be whole again” makes me tear up each time I read it, and may be too precious to unpack publicly (even for an open book like me who writes about orgasms and incontinence). Frankly, all of these beliefs hurt some and make me feel a little silly for holding them, but I know I’m better off knowing they’re there. Now I can do the hard work of making choices about them.

I hope you’re happy, universe.

Finding My Fallow: In Which I Explore Ways to Rest and Restore

While planning Cultivating Leadership’s semi-annual meeting this spring, the committee settled on a farming theme and threw ourselves into it—planting, fertilizing, harvesting… and then we came across an enticing metaphor: lying fallow. It’s a technique where a usually active field is allowed to rest for a season so that the land can replenish itself. What if our gathering included a day of lying fallow? Our merry band of 60+ colleagues gathers as a whole just twice a year. How would they feel about spending three of our nine precious hours together doing practically nothing? We decided it was a safe-to-fail experiment and ploughed ahead. There was no agenda beyond poetry, meditation, and quiet conversations. Those three hours on Zoom left most everyone feeling rejuvenated. So now I’m wondering what lying fallow means for me. What might it enable?

I have spent my life DOING things. In school I got great grades and was the president of clubs. I embarked on a non-profit career, working so hard while being paid almost nothing, then working harder while paid a little more. I tracked my unpaid overtime and gazed upon it with pride and exhaustion. At home, I made dinner for my family. I cleaned the house. I threw elaborate parties for my friends and their friends and a handful of people I swear just wandered in off the street.

And then I couldn’t. Can’t, really. Multiple Sclerosis weakened my body and slowed my brain, forcing me to do less. So much of what is written about MS, and well-being in general, is about doing. Take your medications. Exercise. Eat a healthy diet. Even the directive to get enough sleep feels weirdly active. How does one get sleep exactly? I think we could all benefit from a shift in mindset. From a to-do list to a do-nothing non-list. (This may need a rebrand.) 

My current favorite way to do nothing is Yoga Nidra, which I seek out with the enthusiasm and joy with which I once pursued sex. When I lie down and a soothing voice names parts of my body “top of head, eyes, the space between your eyes” I find a peace I rarely encounter in life. In those moments I ease into myself in a way that is impossible when I’m upright. My brain only occasionally whispers “don’t forget to text your client” before settling back into my body. Briefly I just am. A body and mind unified for a few fleeting minutes.  

That blissful surrender isn’t always possible or practical, though, so I am seeking other, smaller ways to replenish myself, to just be. My colleague Leanne introduced me to the  practice of falling still throughout the day, drawn from something her kid’s school does (oh to grow up in New Zealand!). It’s a sort of mini meditation where you simply ground yourself in the moment and breathe. I started to write “it’s a speedy battery recharge,” and, while that is true, it misses the point. It is a moment of rest, perhaps in the middle of non-restful things, to check in on your body and mind and acknowledge their importance. To just be.

So I have shifted from a do-nothing non-list to a being list. It includes massages, which are a necessary part of caring for spastic muscles but also provide a semi-blissful/semi-painful ninety minute break from life. I’ve started two of three days this week with agenda-less conversations with work colleagues, and those chats fed my soul without checking anything off of a list. I’ve realized reading poetry takes less time than scrolling through Facebook and is a beautiful way to just be. 

A wonderful thing about MS fatigue, for me at least, is that it’s never forever. Sure, I never truly have pep in my step, but if I am exhausted from overdoing it in the kitchen or on the stationary bike or just in life, if I rest a while, I can recover. As someone recently pointed out to me, the word “rest” comes from “restoration.” It can return us to where we were and where want to be. So how can we seek fallowness without adding “be fallow” to our to-do lists? I don’t know for sure, but I am enjoying more directionless morning conversations. I have several poetry books on my desk at the ready when I need a break. And I am reminding myself of the value of rest.

What about you? How do you find your fallow?

Many thanks to Chantal Below, Cornelis Tanis, and Gayle Karen Young for their input on this piece, which was originally posted at https://www.cultivatingleadership.com/whole-self/2021/05/finding-my-fallow

My YouTube Debut: In Which Share My Feelings in a Different Medium

The internet is a weird place. Sometimes it’s fascinating/troubling weird (hi, WTF Evolution). Sometimes it’s magical weird, like when Twitter connects you to a like-minded, MS-having Brit who says you have a good sense of humor (for an American, at least) and then you get to appear on his YouTube series. Thank you, Dom, for taking a chance on this Yank. It was tremendous fun.

MS-havers, make sure to follow @themsguide on Twitter for the latest news on MS.

Hey Jealousy: In Which I Try Not to Hate You for Various Reasons

Every day, every hour really,  another photo in my feeds. Someone grinning with their sleeve rolled up, showing off their Band-Aid or certificate or, in the cool states at least, an “I got vaccinated” sticker. It’s like early voting but instead of doing an inner ”Ba-booooo!” (victory cry coined by my high school class that, 25 years later, I’ve yet to shake), my emotional roller coaster begins.

Your parents are vaccinated! Yay! Mine too. What a relief!

Wait, where do they live? Maryland? Damn it! That’s so close.

What the f… oh, right, she has an underlying condition. Good for her.

School teacher. Great. Right on, right on. 

How old *is* he?

For you see, after waiting and wondering whether I could get vaccinated at all, the MS Society released their verdict in early February: all MSers not only could but should get the vaccine. FANTASTIC. Where do I sign up? Oh, DC is starting with folks 65+ in at-risk neighborhoods? That seems fair. I’ll just sign up for the alerts. And wait. And wait. Each text notification raised and then dashed my hopes until I stopped reading them. Then one day Neal told me that DC had announced plans to open vaccines to people with lowered immune systems. Glory hallelujah! 

I’m mildly immunosuppressed due to my disease modifying therapy (Ocrevus). It’s not the scariest of immunosuppressions, but it is cause for extra concern in these virulent times. So I’ve been cautious and am now hella eager to get some COVID antibodies up in here (up in here).

“You want the vaccine, Rebecca, and it’s available in DC… why are you even writing about this?” you may be thinking.

Well.

While I’m cleared to get the vaccine, the timing is tricky*. I can either complete my shots at least four weeks before my infusion or get my first jab twelve weeks after. March 1 was the first day I was eligible to even pursue an appointment. I’m due to be infused the first week of April. So again I wait.

We all know social media is a double edged sword. It makes us feel both connected and isolated. It allows us to celebrate friends’ victories… and hate them a little for their good fortune. And/or hate ourselves for being too lazy to do whatever they’ve done. Chronic illness intensifies this. It can be a struggle not to lean in to bitterness, especially when scrolling. Oh, you ran five miles today? Amazing! My phone says I managed 572 steps *and* I only fell once. Golly, those homemade croissants look delicious. My hands, which used to do amazing things in the kitchen, can barely manage a successful pancake flip. You dumbed into a COVID vaccination ahead of schedule? My dodgy immune system and I must wait until July.

Logically I know your getting the vaccine has no effect on me except to give me a pang of jealousy followed by guilt for begrudging anyone, especially someone I love, protection against a nasty virus. Similarly, your family dance party, your delectable eclairs, and your hiking getaway are things to be celebrated, but it’s often a toss-up whether I’ll grin or deepen the crease between my eyebrows. When I go into a guilt spiral, I remember the title of a terrific album by talented young (So very young! Damn them.) rockers The Regrettes– Feel Your Feelings Fool! All of these feelings are valid–joy, frustration, anger,  jealousy, guilt, hunger (it always sneaks in), and they deserve to be felt.

It’s also good to keep a little perspective simultaneously. Things are shitty, and I have a lot be thankful for. Everyone I know personally is healthy. I haven’t seen my parents in over a year, but they’re awaiting me in my childhood home when travel feels safe. It feels like there is real cause for hope in the US (thanks, grown ups in charge). Plus, I’m trapped in a condo with a handsome and charming man. 

I’m also the #1 Walk MS fundraiser in the DC area, which brings me lots of joy. Want to share a serotonin hit with me? Click here.

*So tricky that when I asked my neurologist what to do, she said, “Check with the MS Society.” I found this profoundly annoying. If you were part of an MS practice wouldn’t you release a statement or video summarizing recommendations for each medication? I was delighted to receive a video from my MS center last week… until watching it and discovering that it said, you guessed it, “Check with the MS Society!” Further reason to support this marvelous organization.