If you like this blog but wish you could hear the laughter and tears, here’s a podcast for you. Many thanks to Nina Simonds for inviting me to chat with her. You can listen…
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.
Now I find myself in a new state. Each small step up (into the house, onto our parking pad) is a struggle. I spent 10 minutes trying to get up off the bedroom floor after a small collapse* recently before giving up and awaiting my knight in shining pajamas. He got me to my feet only to have my legs say “no thank you”. So I was hoisted onto the bed where I lay in an awkward, dejected heap.
These moments happen more and more. My fabulous new purple Rollz rollator moves a little too fast, and I bend at the waist without the core or arm strength to right myself. The muggy heat hits me so hard, I can barely wobble to the car with a cane and an escort, leaving Neal to lift my legs in and close the door. Some days it’s hard to stand long enough just to brush my teeth.
Blame Game & the What-ifs
I spend a lot of time these days cycling between who-can-I-blames and what-ifs.
- My doctors didn’t do their jobs! Why did no one emphasize the importance of exercise from the moment I was diagnosed?
- What if I’d kept up with the workouts LaTasha gave me?
- The pandemic made me weaker! And Neal made me soft! Having him around and insisting on doing things for me has made me less independent.
- What if I’d done my physical therapy exercises regularly since the first time I went?
- I am so damn lazy! If I tried harder, I’d be stronger.
You get the idea. By the end of this cycle I’m angry, weepy, and fantasizing about the time machine that will take me back to when dance classes were possible and making past-me buy a lifetime pass to Joy of Motion. Would it make any difference? Who the fuck knows? I sure would have had fun taking Afro-Brazilian classes, though.
Worst Case. Best Case. Likely Case.
When I’ve exhausted my fretting about the past, I look to the future… what does it hold? Another decade of Neal hauling my ass off the floor before we have to hire a health aide when I’m only 54? More time in a wheelchair? ALL of my time in a wheelchair? And what about my brain?! When will it turn to complete mush? When will I no longer be able to put depressing/inspiring words together to share with the world?
There’s a cool and simple framework for reeling in catastrophic thinking like this that I learned at the Capital Coaches Conference from Dr. Karen Reivich’s keynote address. So here goes.
Worst case: I’m confined to a wheelchair tomorrow.
Best case: My strength and balance improve so that I can walk and do daily activities independently.
Likely case: My slow decline will continue. Slowly.
Purposeful step: Commit to 10 minutes of physical therapy daily.
I’ve wept through writing most of this blog, but typing the above settled me. A small purposeful step can do wonders, and I think this one is doable. Especially now that you’re all my accountability buddies. Email me! Text me! Check in on whether I’ve done the PT.
Finding Some Pride
AmeriDisability has this to say about Disability Pride Month:
“Using bold images and strong words, disability pride awareness dates, parades and festivals both uplift and challenge. Pride comes from celebrating our heritage, disability culture, the unique experiences that we have as people with differing abilities and the contributions that we offer society.”
I have not gone gentle into my disability, and I feel like an asshole whining about the possibility of wheelchair confinement while writing about disability pride. I have at least nailed the “strong words” part of the celebration, and I’m feeling pretty proud of these “unique experiences” and “contributions”:
- Speaking candidly about my life, which I hope allows those with MS to feel less alone and those without MS to see the world a little differently
- Representing the disabled community with good humor while challenging the rest of the world to do better
So happy Disability Pride Month! I’ll be celebrating from my fancy new toilet.
*A collapse = “Oh shit, can’t stand anymore, let’s melt to the floor, shall we?” A fall = “Welp, I guess I’m going down! Protect the face!”
Incontinence Talk: In Which I Wave a Catheter Around on Camera
Dom asked me back with two other lovely MS-having humans to discuss bladder and bowel issues in MS. Did we forget to mention UTIs? Yes! Role of diet? Yes! But if you want some candid talk about what MS can do to your excretory functions *and* what you can do about it, this is well worth your time.
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.
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.
TB or Not TB: In Which I Await Test Results With Frenzied Calm
Two-ish weeks ago I received this note from my always-tactful neurologist:
“Your TB test is coming back positive. Before we move forward with Ocrevus, I would like for you to see infectious diseases to make sure you are safe as we make these transitions.”
“TUBERCULOSIS?! What fresh hell is this?!” I asked myself.
“Ocre-who-now?” You may be asking yourself.
Let me explain. My current medication, Tysabri, which has kept my immune cells from crossing the blood-brain barrier thus keeping me lesion-free for lo these seven years comes with a nasty risk called PML. Take it away, Cleveland Clinic:
Progressive multifocal leukoencephalopathy (PML) is a disease of the white matter of the brain, caused by a virus infection that targets cells that make myelin — the material that insulates nerve cells (neurons). Polyomavirus JC (often called JC virus) is carried by a majority of people and is harmless except among those with lowered immune defenses.
Part of the Tysabri protocol is getting tested for the JC virus every six months, and my levels of antibodies have slowly crept up to concerning levels. Add to that the fact that PML risk goes up the longer one is on Tysabri: time for a new medication.
My options were Mayzent, a daily pill that traps white blood cells in the lymph nodes so they can’t attack my precious myelin, and Ocrevus, a biannual infusion that targets a specific B cell that “plays a key role in the disease.” Choosing medications is stressful and difficult, especially when all you have to go on are the cheerfully vague drug-company-produced brochures and indecipherable research abstracts. Much as I cling to my AP Bio test score as proof that I am science smart (thanks, Mrs. Howerton!), when it comes to my own health I don’t like to risk it. So I called in my own personal science guy, Dr. Dad (who spent his career in the Cell and Molecular Biology Department at the Medical College of Georgia), and he suggested I contact a family friend who is a neurologist with MS–and a great guy to boot.
That conversation turned my attention away from Mayzent, which had tempted me with its siren song of “just one pill a day” and being touted as the only drug approved for secondary progressive MS (which I have), because who wants their white blood cells held back during a pandemic?! Family friend reminded me that targeting one specific type of B cell is less immunocompromising and that Ocrevus has a longer track record. Ocrevus it is!
[Brief sidebar. How lucky am I to be reasonably smart and to have outside resources to call upon?! In these moments I worry about my fellow MS-havers that don’t have the luxuries of time to ponder these choices, super smart people to guide them, and only moderately addled brains.]
I told my doctor my choice, and we came up with a plan: bloodwork, one last dose of Tysabri, an MRI four weeks after that, and then my first infusion four weeks later. I’d be newly medicated by fall!
Enter the positive TB test. A week after receiving it, I enjoyed a telehealth visit with infectious disease specialists Dr. Z and Dr. B, who asked a battery of questions and observed “You don’t look like you have TB.” They also explained that I likely have latent TB, which means I’m having an immune response without any symptoms. If that’s the case, I have three months of antibiotics ahead of me. If it’s more serious, the treatment stretches to nine months. My future depended on a chest x-ray.
So I got the chest x-ray. And, much like with each MRI, I simultaneously know that the results aren’t hugely consequential (the details of what’s going on inside me won’t have a huge impact on my life) and have a low hum of anxiety as I await the dispatch from my innards.
This morning’s 9am telehealth call in which I was to get results has been postponed because the radiologist’s report wasn’t ready. I am annoyed. I am calm-ish. I am eager to know just how many months of potential yeast infections lie ahead. I am wearing a bold lip (a favorite coping mechanism) and hoping for the best.
UPDATE: My lungs are clear! I have three months of copious antibiotics ahead of me as well as orange pee (and potentially orange sweat and tears?!) and NO ALCOHOL. As a particularly humorous friend put it, “Sorry about your consumption. At least you have more in common with Keats now.”