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.

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.

My Life In Stitches: In Which I Chronicle Trips to the ER

1981: I am four and “helping” my dad in the back yard. “Helping” means playing Tarzan with the stakes and ties holding up his tomato plants. Shortly after he says “Stop that, Rebecca!” for the fifth time, I take one more leap/swing and fall, hitting the back of my head on a log. My only memory of the aftermath is my mother and sisters coming home to find me standing on a kitchen chair while Dad tried to comb my hair and assess the damage. Stitch count: four.

1982: I am five and a budding gymnast. I use the couch arm and the adjacent director’s chair to play parallel bars, supporting myself on my hands and letting my legs swing free. I have been told not to do this. Many times. But I continue and am surprised to be impaled on a sewing needle my mother has left stuck in the arm of the couch. Doctors try and fail to remove the needle, so an orthopedic surgeon is called to finish the job. The wound is closed, and my wrist and arm are wrapped and splinted. I am treated to McDonald’s at the end of the ordeal. Stitch count: two.

1991. I am fourteen, and it is early in freshman year. I take out the trash, yelping when I get near the door to the carport. A piece of glass punctures the trash bag and my right wrist. I watch this one get stitched and think it’s pretty cool. I get the side eye at school and realize what a bandaged wrist implies. Tasteless jokes about suicide ensue. My mother still apologizes when this incident comes up, and to this day I shout “There is glass in the trash!” repeatedly when there is glass in the trash. Stitch count: four.

2007. I am thirty. It is the morning of Thanksgiving. Friends are coming over, and I am working my way through the prep spreadsheet I’ve meticulously created. Cutting an onion with a freshly sharpened knife I slice through my left index finger. We apply pressure. We elevate. The bleeding continues. I insist I will be fine. There are tears. Neal offers to drive me to the ER, but I refuse. Thanksgiving must go on! I accept a ride to the Metro station and take the subway to GW, elevating my finger the whole way. A handsome physician’s assistant stitches me up and I am back home in under two hours. A Thanksgiving miracle! Neal and Char do a fine job cooking without me. Stitch count: four.

2009. I am thirty-two and en route to visit my college roommate. I leave work at the Folger early and might be rushing more than I should along the uneven sidewalks between work and the train station. I catch my toe on a brick and land on my face. I am not entirely sure what I’ve injured, but I know I’m very bloody. A passing construction worker hands me a fairly clean towel, which I press to my nose. Other passerby stop. I sit on the sidewalk until an ambulance arrives and four clean cut, well-dressed doctors emerge, circle me, and lift me inside. Perhaps due to their attractiveness, I perk up a little and stop crying long enough to explain where I was headed, that I have MS, etc. I ask if they always dress so well when picking women up off the street, flirting just a little. They explain that they’re physicians at the Hart Senate Building(!), just down the road. I am driven the half block then wheeled through security and into their office, blissfully unaware of what a horrorshow my face is. I sit in a comfy chair. The doctors clean me up a little then ask if I’d like to see myself. “Sure!” I say. A mirror is brought and I see a bruised nose, a gashed forehead, and a severely split lip. I realize this is the face that was flirting moments ago. Idiot! I keep it together until I reach Neal at his office and sob as I try to tell him what happened. One of the doctors takes the phone and explains. Neal retrieves me and takes me to GW’s ER where, after six hours, I get stitches in my forehead and lip. The lip flushing and Novacaine is excruciating. Recovery is slow and gross, but I am eternally grateful to PA Amy for her beautiful work. When I feel up to it I deliver a thank you note and cookies to Dr. Harder and the other Senate doctors. Dr. Harder calls to follow up. We do not start a torrid affair. Stitch count: twenty.

2014. I am thirty-seven. I trip in the basement hallway of the Folger and bang my forehead on a door frame. First aid is kindly administered by a member of the fabulous security staff, which is always so good to me. Stitches seem inevitable. An ambulance is called in spite of my asking to simply taxi or Uber. I feel ridiculous being carried out on a stretcher for a mere brow abrasion, but I smile through it. Inside the ambulance I wonder why the Doppler effect never kicks in. God, that siren is so loud and relentless! Oh right. I send Neal an email entitled “Oops I did it again” en route, and he meets me at the ER in spite of my telling him not to. The ambulance arrival gets me through triage more quickly than usual. I leave with stitches along my left eyebrow and a shiner. Stitch count: five.

2020. “I am forty-two, no forty-three,” I tell the physician who runs to my side. I have just finished six hours in the Cancer Institute of Washington Hospital Center getting my first infusion of Ocrevus, my new MS drug. I am groggy from the meds and from sitting so long but have assured the nurse who wheeled me to the lobby that I wil be fine to make it to the Uber. Three steps away from the car I fall to my left, scraping the side of my face on a cement planter and landing chin-first on the sidewalk. My Uber driver and a hospital guard scoop me up, deaf to my cries of “Please let me sit a minute!” (Obviously they haven’t read my blog about falling.) I teeter between them while being peppered with questions by the guard, an indignant aid (“I keep telling them not to abandon people post treatment when they’re too weak to walk!”), and the aforementioned physician, who examines my chin, declares stitches necessary, and fetches gauze to stuff into my bloody face mask. I am put in a wheelchair and pushed to the ER to check in and then wait. And wait. And wait. Foolishly I text Neal, who drives to the hospital, neither of us remembering that Covid restrictions mean he cannot sit with me. He runs in with Coke and water and says he’ll be right outside. We text sparingly as my phone slowly dies. I read much of To All the Boys I’ve Loved Before as well as a good chunk of a David Rakoff collection. After three hours I am brought to a private room where my vitals are taken for the thirtieth time (thanks to the earlier infusion). I am examined. I am told I need a CT scan to ensure my jaw isn’t fractured, which will delay things further. Boo! But I am offered drugs. Hurrah! The drugs arrive an hour later, and I rejoice in Tylenol-3 and water (my bottle long ago emptied). The doctor returns, saying he might as well stitch me up while I await the scan, and the moment I lie back, a nurse arrives to take me down the hall. I wait. I am scanned. I am stitched at last. I am given a gauze goatee. I call Neal from the lobby and collapse into our car, twelve hours after he dropped me off. Stitch count: five.

Forty-four stitches in nearly forty-four years of life. And what have I learned?
1. Listen to my parents. If they say not to do something, there’s likely a good reason.
2. Walk slowly. (Neal scoffed at the idea that I have learned this. I’m trying!)
3. Ask for help.
4. A Kindle full of good books can make anything bearable.
5. Facial wounds do not enhance one’s flirting game.

I Can’t Stand the Heat: In Which I Get Out of the Kitchen

“Throughout September, join us in celebrating Can Do Month by sharing a photo of how YOU thrive with MS!”

This line greeted me in my daily junk email aggregator, and rather than gagging (my usual response to being encouraged to focus on all the things I can do with MS), I felt sad. For these days I am not thriving. These days I have just enough energy for a jaunt to physical therapy, a few hours’ work, and two episodes of Buffy. These days it is not uncommon for Neal to make all three of our meals for us as I’m relegated to a bar stool to read or play with my phone. If he’s preparing dinner, one eye is on my task while the other looks up compulsively to see what’s happening on the other side of the counter.

While these nights spare me the expenditure of physical energy, my mental energy triples as I worry about a) whether he’s doing it right and b) when to speak up. Cutting onions or other vegetables unsafely (i.e., not with their flat side down)? Let it go. Trying to boil water on medium heat (which, to be fair, is pretty damn hot on our range but will slow the process)? I’ll likely just make an excuse to pass by the stove and bump it up a little. Subbing whole wheat flour in cookies when we’ve run out of AP? Oh hells no. Initially I calmly (mostly calmly) read recipes aloud, micromanaging each step, but, as I try to let go more, I try to let him do his own thing, checking in only occasionally.

While I was on a call last week, Neal made a great semi-improvised quiche. Mushrooms, asparagus, spinach, THREE kinds of cheese. Really delicious. And I was happy as I ate it . . . and yet so very sad.

From the moment our cohabitation began, I was the primary household cook, ensuring we ate really good dinners nightly with a least one proper breakfast on the weekend. Sure, Neal would jump in from time to time to make burgers or do some of the chopping, but the kitchen was my domain. I received marriage proposals while passing plates of homemade mozzarella sticks and olives in blankets at our ridiculously crowded house parties. I had a goddamn cooking show! Even as the MS slowed me down, I almost always made dinner. Sure I did it from a rolling stool and begrudgingly accepted help with heavy pans and fiddly preparations, but I still did most of the work.

Lately due to some combination of MS, mega antibiotics, and Covid malaise I have trouble mustering up the energy to make a cup of tea. Our I cook/you clean arrangement has become you cook and clean while I sit still cycling through gratitude, frustration, anger, and dismay. When dinner isn’t quite up to my standards, I regret that I couldn’t do it myself. When it’s great, I feel threatened. I’m ashamed to admit it, but it’s true.

I recently told Neal I’m pretty sure that one third of the sentences I say to him start with the words “Would you please.” Each year, each month adds to the snowball of needs that is me, and, if I lose my status as kitchen goddess, what am I contributing to our household barring the occasional (okay, frequent) pun and a pretty face? I know marriage is about ups and downs, sickness and health, etc. But I’m the dummy who put promises to feed the family in her vows. TWICE.

MS (/Covid/antibiotics/2020) is shaking another part of my identity, so I’m practicing my own kitchen serenity prayer–pitching in when I can, having the grace to step away when I can’t, and listening to Neal when I lack the wisdom to know the difference. I made us an excellent breakfast of toast, avocado, scrambled eggs, and smoked salmon this morning. I’ll let him handle dinner tonight.

Steak & Arugula a la Neal.
I couldn’t have done it better myself.

Rebecca’s Health Report Vol 21, World MS Day Edition: In Which I Restart a Tradition in a Public Forum

Hi family,

In honor of World MS Day I’ve decided to send this report to a broader audience. I realize it’s been a while since I wrote one of these, and I’m sorry. There have been tiny victories and defeats over the last few years, but for the most part my health remains low grade shitty, hardly worthy of an email. Or blog.

My weeks before being stuck at home had a different rhythm, and self care was easier. On good mornings now, I stretch, get out of bed, and then head to the living room for 15 – 20 minutes of Pilates on my own before a sensible breakfast. It is equally (read: MORE) likely that I will spend 30 minutes scrolling on my phone before rolling out of bed, ignoring the yoga mat, plopping my tight glutes on a barstool, and ploughing through two blueberry scones. It takes such effort to be good, to take care of myself.  And, no matter how much I remind myself of the wonders a small bout of morning exercise does for my body and psyche, it is hard as hell to make it happen. My wonderful Pilates instructor Jeneva spends a half hour Facetiming with me on the weekend, so, if nothing else, I have that.

Me, on a “good” morning, trapped in my Pilates ring

I feel like I’m falling more these days. Maybe due to reduced core strength. Maybe because I’m not paying enough attention. My elbows are covered in little pink circles where I’ve caught myself on a wall. The lightest of skinnings. Post-fall my first thought used to be a quick calculation of when my next massage would be. Under current circumstances those calculations are pointless. I try to be happy for those who can finally get their hair cut  and colored again*, but I won’t be celebrating until massage studios are open. Massage never fixes things completely; it sure makes them feel better sooner, though.

I should also acknowledge that increased falls with Neal home are a mixed bag. On one hand, he’s always here to help me up. On the other hand, HE’S ALWAYS HERE. Sometimes a girl just wants to flop around awkwardly in private.

I was due for bladder Botox in April, but rules regarding what procedures are essential make it so that all my urologist can provide is an email saying “I am not quite sure when we are opening up to do Botox, but I have a list of people to call and will add you so we can get you scheduled ASAP.” So I try to curb my liquid intake and celebrate each trip to the bathroom as a chance to get in more steps.

Oh speaking of steps–thanks again for your Walk MS donations! I haven’t managed a full mile  since then, but  I try to do a half mile most days. It was pretty damn inspiring to realize I could do it. So hurrah for that.

What else? Oh, I  had a telehealth visit with my neurologist, Dr. A, whose phone manner is much better than her bedside one. (I still haven’t sorted out the paperwork with Johns  Hopkins, which is annoying but not worth my energy presently.) The chronic back pain that she shrugged off last fall is now worthy of her concern, so I take 100mg of Gabapentin 3 times a  day. And it  helps some! Fish oil and Biotin are back in the supplement pool at higher doses than before. (Sure, why not?) She also sent me for a brain and cervical spine MRI. No results yet, but I’ll keep you posted. My biannual bloodwork (required to keep me on Tysabri) will be completed next week when I go to Georgetown for neck Botox. Yes, neck Botox is fine but bladder isn’t. Ours not to reason why.

At work we have a Slack channel (Slack is like Facebook for work) called #covidsilverlinings, and here are mine:

  • No massages means no paying for massages, nor paying to be transported to and fro. And while I will strip down and get on that table THE MOMENT it’s possible, it’s good to know that my body does not shut down without that care.
  • Pilates at home is effective! And, again, doesn’t require transport. I prefer the apparatuses (apparati?), but perhaps I can do a combo of home and studio work moving forward.
  • Being home all the time has taught me that I’m a decent walker when I take smaller steps and use my rollator. Bonus: the rollator is handy for transporting snacks from room to room.

That’s all the news from DC. All my news, at least. Thanks for your support. I am so lucky to have you all!

Love,
Becca

P.S. Mail has been inconsistent of late, so I assume my MS Day presents are stuck at a post office somewhere on the east coast. Looking forward to their arrival!

*Believe me, I get it!