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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.

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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.

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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.

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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!

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Hope is the thing with feathers and reality has its charms: In which I explore an important polarity

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.

Jennifer Lopez wears a shiny silver bodysuit while clinging to a pole. Many humans clad in white reach up toward her.
Pictured: actual number of people required to maneuver me through a successful pole dance routine

*The really irritating thing about this sentiment is that it’s true whether a cure comes in 5 years or 500!

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Bewitched, Bothered, and Disabled: In Which I Find Some Pride

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.


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Inspiring and Brave: In which I make some peace with being a unicorn

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.

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Putting the MS in MSC: in which I undertake some mindful self-compassion

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.

Book cover reading "The Mindful Self-Compassion Workbook" over an image of a wooden walkway leading to a beach
True story: when Neal saw this in the kitchen he said, “What loser asshole ordered this book?”
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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.