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.
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.
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.
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!
Welcome to My World, In Which I Compare MS and Social Distancing
When social distancing first kicked in I was on a call with my usually globetrottting but newly homebound colleagues who were bemoaning the fact that they were sitting all day. A particularly sensitive one of these lovely humans wrote soon after to check in, worried about how those comments might land on someone that has no choice but to sit most of the day. I gave it some thought and realized that, while I did briefly want to sing “Cry Me a River,” I was primarily interested in the fact that the whole world was getting a taste of what it’s like to have MS.
You cancel plans you were looking forward to because you can’t leave the house.
Sure, there aren’t government decrees insisting that people with MS stay indoors, but, believe me, my body is harsher than any mayor. I don’t leave the house because I can’t. Literally. Due to fatigue. Due to my legs being little bitches. Due to it being 80+ degrees. Due to depression. You get the picture.
You spend hours wondering is this cough due to COVID . . . or is it just a cough?
MS symptoms are a Pupu Plattter of weirdness. Spasticity, gait issues, bladder/bowel problems, and sexual dysfunction are all clearly MS-related for me. Fatigue? MS likely plays a big role but so does not exercising enough and eating poorly. And my short term memory issues that scare the hell out of me? That could be MS or just the fact that I don’t focus well or pay enough attention.
You don’t know how long this will last.
MS, like a diamond, is forever, but its individual symptoms’ lengths vary. I had double vision ten years ago that seriously affected my day-to-day to life and had to stumble through without an end–or two–in sight. It was mercifully finite. Lower back tension and pain that settled in two and a half years ago have been my constant companions ever since. Now that I’ve reached the progressive stage of illness, I have to make peace with the fact that things aren’t going to improve much. Good news: you don’t have this problem.
You feel isolated from friends and family.
I am #blessed that this is not an issue for me. All of my friends and family have been crazy supportive since my first pre-diagnosis tingle. If MS Twitter* is to be believed, this is not the norm.
You find new ways of doing things.
You’re moving your weekly coffee date online, adding ad hoc teacher duties to your routine, and cutting yourself and your family some slack. I’m sitting down (or, UGH, asking for help) to cook dinner, working Pilates into my schedule, and cutting myself some slack. Your new ways of doing things are constantly evolving as your circumstances change and you figure out what works. Mine, too.
You are on a roller coaster of emotions.
Some days what works is lying on the floor crying, And that’s okay, so long as you get up eventually. Some days you are a goddamned rock star with one hand ready to unmute yourself for a meaningful contribution to a Zoom meeting while the other is cutting Shrinky Dinks.** Some days are hopeful. Some days are not. But you (and I) press on because there is far more good in the world than shit, even in these particularly shitty times.
*A thing! Really
**I saw this happen last week.
It’s OK That My New Year’s Blog Is Posted in February: In Which I List Other Things I Learned in 2019
Being both a nostalgia whore and a planner, I adore the change from one year to the next. New Year’s Eve as an event ceased to be fun when close friends moved too far away for quietly drunken nights in together. Now I immerse myself in reflection instead. I scroll through photos on my phone. I sort through the basket filled with cards received and Playbills from shows seen. And I think about what I’ve done and what I hope to do.
In my reflection, I realized I have learned some things that might be useful to folks with chronic illness–and even a few tips for you healthy people.
1. Go easy on yourself.
You may have noticed that I don’t blog regularly (hi, Patrick!). I started this post New Year’s Eve and have thought “Damn it, Rebecca! Just finish it already!” repeatedly over the month. When I can fit in only one Pilates session a week, I think “Damn it, Rebecca! Even for someone with MS, you’re a lazy blob of humanity!” Too tired to finish dinner prep? “Damn it, Rebecca! If you’d planned better, you could have done this without help!” There are kernels of truth in each of these statements of self-abuse, but focusing on them neither helps me exercise nor gets dinner on the table. So I’m leaving self-damning behind and doing my best to accept my limitations without discouraging notes from my internal peanut gallery.
2. Don’t apologize.
Okay, I don’t mean NEVER apologize. I didn’t become a jerk in 2019. Apologies have their place, but that place does not need to be a permanent residency on my lips. If I move awkwardly through a crowded room, I smile and say “excuse me.” If I step on someone’s foot in the process, I apologize. I would never expect someone else with a disability to say “Sorry!” to me, so why on earth should I expect it of myself?
3. Ask for what you need.
I’ve spent a lot of time grumbling about being placed in the back of planes in spite of having declared a disability and requested assistance getting from gate to gate. Should that trigger a “hey, give this lady an aisle seat near the front of the aircraft” notification in the system? Yes! But we aren’t there yet. Airlines have numbers you can call to ensure your needs are met. You may have to call regular customer service first to get that number. Once you have it, save it in your phone and use it.
On a more quotidian note, I exhibit fierce independence usually seen only in toddlers determined to pour orange juice from big jugs into their tiny cups. I want to do everything MYSELF, even at the risk of my safety. After one too many burned hands and sloshed waters, I have humbled myself to bravely ask strangers (without apology!) to carry things to my table for me at restaurants. And they’re happy to do it.
4. Find and embrace things that make life easier.
Perhaps the biggest revelation of 2019 was my discovery of True & Co. bras, many of which have no clasps! Plus, they’re pretty, flattering (no uniboob, a usual risk with this style), and comfortable–even for those suffering from the dreaded MS Hug. Being able to put on a bra on my own is the smallest of victories, but eliminating little frustrations gives me a greater chance of making it through the day happy.
5. Make peace with your body.
Years ago my massage therapist Laura suggested I ask my legs what they need. Although I have yet to get a clear answer from any of my body parts, I have changed the way I talk to them. (Sensing a pattern? A+!) Uncooperative legs used to get an audible “Fuck you legs! Pull it together!” Now it’s much more of a calm “You’ve got this. You are strong, and you can do it if you go slowly.” I often feel ridiculous hearing myself utter this sort of positive self-talk, but I’ve realized that taking an adversarial relationship to my body–and, for that matter, my disease–does not help. I’m not sure that kindness makes me stronger. It does make me feel slightly less shitty, though, and we could all use more of that.
New Doctor. Who dis?: In Which Cautious Optimism Does Not Pay Off
My beloved neurologist recently moved to Florida. How did I love him? I shall count the ways. I loved his quietly avuncular nature. I loved that appointments with him lasted a full hour, leaving plenty of room for “oh yes! I’ve been meaning to ask . . . ” queries that never made it to the list I always brought with me. I loved his one-two punch of experience and openness to new treatments. I loved that he took an interest in my life beyond my disease and gave me small glimpses into his. I especially loved that he sent me to the wonderful Dr. B, who calms my head tremors with Botox. And, most importantly, I loved that changed my DMT (disease-modifying therapy) to something that has prevented new brain lesions for six years.
Each time I have changed neurologists the results have been good. The kind and quiet Dr. W passed me on to Dr. C, whose fondness for Shakespeare gave us an entryway to rapport, making it easier to discuss excretory mishaps and other concerns. I left him for the recently departed (from DC) Dr. M in the name of getting more specialized care. His warmth and good humor were welcome bonuses.
So when Dr. M announced he was leaving, I was crestfallen but cautiously optimistic. Perhaps a new neurologist would bring new ideas. Unconventional approaches. Maybe even a prescription for the massages I invest thousands of dollars in each year. This could be great!
I went into my first appointment with Dr. A like I do most nervousness-inspiring situations, with a big smile and a tendency to talk even more than usual. I wanted her to like me, to see I’m not the average patient. I am good natured and funny! I know WebMD isn’t a real doctor! I understand science! (Sort of. My AP Bio exam score 25 years ago may have given me overblown confidence in this realm,)
I was greeted by the blankest face I’ve ever seen. Not a great start, but I could deal with this. I modulated my manic tendencies, directing my good cheer at the three med students to my left who seemed to need it. In our half hour together, the only flicker of emotion that crossed Dr. A’s face was repeated eye rolls when the students’ responses to her questions disappointed her. Corrections were delivered in a condescending tone. My heart broke for them . . . and for me.
We spoke about the need for an MRI and bloodwork. About how decreasing the frequency of my infusions is wise since the complications (which include DEATH, by the way) grow more likely the longer I’m on the drug.
“Should I maybe try another drug now? I hadn’t realized my risk went up with time.”
“It’s an option.”
Silence.
Ooooookay. Now to my list of questions
With a grin to the medical students, “Sorry, you get more than you bargain for with me in the office!” Back to the doctor,
“I’m finding orgasms especially elusive these days.”
“Yeah, unfortunately there’s no female Viagra yet.”
“And if there were insurance wouldn’t cover it! Or let you get some internet doctor to prescribe it!” I laughed.
Silence.
“Talk to your urologist.”
“I’ve noticed that my voice is froggier than it has been.”
Silence.
“It’s hard to describe . . . it isn’t as strong as it was . . . it’s sort of creaky?”
“Do you mean how it’s kind of sing-song?”
“Well, no. But now I’m self-conscious about how I’m talking.”
Silence.
“That’s not MS.”
I felt embarrassed, dismissed, and foolish. I barely got through the rest of my list.
The physical exam was performed by the med students, deemed worthy of Dr. A’s eyerolls yet entrusted to try their skills on me all by themselves with her interrupting only occasionally to say things like “What do you notice about her gait? What causes that?” They did a fine job, but I couldn’t help but wonder if their assessments would accurately represent my progress. Maybe these benchmarks don’t matter, especially when one is as far along as I am? I was too discouraged to put up a fight.
In typical form, I kept my shit together long enough to exit only to fall apart in my Lyft home. How could I go back to someone that belittles med students in front of patients? And, worse, who addresses my concerns without compassion? I understand that you may not be an orgasm whisperer and that my vocal issues might not be caused by MS, but I definitely need a flicker of a smile when you tell me these things. My inner voice sing-songed my distress, dismay, and despair all the way home.
It’s now a month later, and I have an exit plan. With the best neurology department in the US just an hour away, it seems foolish not to give it a try. Plus, I had the good fortune to meet a charming doctor who works there at an event I attended recently. Here’s hoping we’re as compatible in the office as we were over dinner.
On Sparkling: In Which I Examine Why I Don’t Write
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| Sadly, my “dolls” have the opposite effect. |
My friend Patrick can be relied upon for unexpected and amusing non sequiturs delivered via text. So I was intrigued when he appeared on my phone last week saying, “I’ve given this a lot of thought.” I watched the three dots expectantly, wondering what delight awaited me.
“You suck at regular blogging.”
Hm. That was unexpected but hardly amusing, especially because it’s painfully true. Regular blogging falls somewhere between carrying a full cup of liquid without spilling it and doing jumping jacks on the list of things I suck at. Four blog ideas have rattled around my head for months, and I haven’t managed to put finger to keyboard since January. What the hell is going on?
On the surface, there’s plenty. I continue to work part time. My leadership coaching program also continues, now with the bonus of three pro bono clients. I have scattered doctors’ appointments plus regular wellness ones (chiropractor, massage, etc.). It isn’t the most demanding schedule, but adding anything to the mix is hard when showering requires a 15 minute recovery period before I can make it out of the bedroom. If I work all afternoon, lifting my arms to the keyboard after hours is an exhausting proposition. On the rare occasions I have remaining energy, I tell myself should devote it to exercise (something I also suck at doing regularly of late).
Here’s the thing: I could schedule my day better. I could write in the morning, as I’m doing right now. I could make it a daily habit. I genuinely like (and hate*) writing this confessional-informational blog. So what gives? Why can’t I get my shit together to do it?
Luckily, there’s a tool for that! Immunity to Change (ITC) posits that “failure to meet our goals may be the result of an emotional immune system that helps protect us from the fallout that can come from change–namely disappointment and shame.”** Last spring I had the good fortune to participate in an ITC workshop delivered by two of my brilliant colleagues. What was my improvement goal?
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| This is an Immunity Map worksheet. You can get a blank one online. |
I AM COMMITTED TO MAKING TIME TO WRITE ON A REGULAR BASIS.
It’s been a year, and I have yet to reach my goal. Still, the insight I got from this exercise has stuck with me. The basic idea of the chart is that column one is what I want. Column two is what I’m doing (or not doing) that prevents me from achieving my goal. Column three begins to unpack the why of it all, listing good reasons why I’m behaving the way I am. And column four both blows things to their extremes and reveals some underlying and (in my case, at least) previously unexamined truth.
I assume that now that my body is failing me, all I have to offer are my smarts and wit — and if I don’t sparkle in all things I do, people will stop putting up with my limitations – and if people stop putting up with my limitations, my friends (and spouse) will leave me – and if they disappear, I will have to move back in with my parents.***
My friends, in rational moments, I don’t think you will abandon me just because my body is in decline. That said, I must acknowledge that I worry constantly about being a burden. It’s no fun watching my 80-year-old mother, who has her own mobility issues, roll my suitcase into the airport and hoist it onto the scale. Or making half a dinner only to get out of the kitchen because I literally can’t stand the heat. Some nights after going to bed I ask Neal to fetch three separate things on three separate trips because I can’t do it myself (nor can I gather my thoughts enough to make a single request). If you socialize with me, I will sparkle with all my might to make up for the fact that I’m likely to need you to go for a napkin run or walk me to the bathroom or, heaven forbid (but it’s happened), cut my damn food for me.
It may seem silly that this same impulse arises with blogging since I can’t very well ask anything of you except your attention, but I’ll be damned if I’m going to serve up mediocre slices of my beautiful, mostly intact mind for your consumption! You deserve better, especially since I am burdening you with my trials and tribulations. (See column four’s “being whine-y = being a less good friend.”) As I’m trying to wrap this up, I’m worried that this hasn’t been funny enough and that I don’t know how to stick the landing. Perhaps I will let it go this time.
Pat, I’ll try to be easier on myself to ensure you have something to read on your commute. Thanks for inspiring me to write again.
*I don’t trust people who write who don’t have a healthy dose of hate with their love of the craft.
**I pulled this quote from a Harvard Extension School article, which I highly recommend but is unlinkable. Google it! There’s also a whole book about the subject. And this terrific video.
***Mom and Dad, I love you dearly. I just don’t want to live with you. I hope you understand.
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