I’m on my fifth physical therapist in this MS journey. The first was a stern older woman who tried in vain to strengthen my pelvic floor. (Yes, I realize that sounds like the plot of a niche porn.) The second was a dumb but pretty and oh-so-strong young man whom I dazzled with my knowledge of 80s music as he threw me to the mat again and again to teach me to fall properly. (He’s the basis of my as-yet-unwritten smutty romance novel.) Next came another sweet and moderately helpful one at the Capitol Hill location of Physiotherapy Associates followed by Danielle at the same site. I highly recommend Danielle; she’s encouraging without being cheerleader-y, good at banter (a must if you’re spending 30+ minutes with someone twice a week), and a solid physical therapist.
Given my recent struggles, though, when it came time for 2017’s PT adventure, I decided to go for a pro. Pro, meaning someone with experience with neurological issues. Enter Molly. Well, first, enter Valerie, a fellow Georgian about to take her PT boards — or whatever PT tests are called. Initially I was a little peeved to have this near-child taking care of me when I’d asked specifically for an expert, but Val had studied up on MS and gave me some new insights and potential tools (a foot drop brace probably is not for me, but it’s good to have tried). Molly, though. Molly is where it’s at. She is a master of the tiniest verbal cue that changes everything. When I told her I felt like I was walking on the edges of my feet, she said not only to strike with my heel — a key thing for folks with foot drop and something you normal-walkers do automatically — but to think about making sure my big toe hits the ground after. I’m not saying I walk well presently, but, if I think about it, I can almost mimic a normal stride. And maybe if I think about it enough, I can someday do it without thinking.
Molly has also concerned herself with my back pain, which has eased considerably while in her care. When I told her it twinges when I put things in the oven, she said, “Okay, let’s practice that!” and handed me a slab approximating the size and weight of a cookie sheet to hold while I did modified squats. I realize this leans more toward OT than PT, but I was thrilled to have someone concern herself with something that matters so much to me.
A week ago I was supposed to have my final session in this PT series, the one where I blow Molly away with my ability to step over 6″ hurdles and walk for minutes at a time. I roused myself at 7, pulled on clothes, ran a comb through my hair and a brush over my teeth, and hailed an Uber for an 8 o’clock appointment. I signed in, paid my $30, and awaited Molly. Instead, Rachel arrived and led me through a series of exercises after explaining that I’d have to reschedule the final evaluation with Molly. Annoying? Yes. But I made the appointment.
|A body at rest stays at rest.|
When calling to re-reschedule (realizing I could not face another 8AM day), the woman I spoke to said, “Okay, you can do 3pm with Rachel on Thursday.” Rachel? Rachel?! I explained that I needed an appointment with Molly and was informed “Molly doesn’t work here anymore.”
W. T. F.
My trainer moves away. My physical therapist disappears without a trace. I think the universe is telling me not to exercise. I’ve certainly behaved as if that’s true of late, but I’m trying to change my ways. Plenty of people exercise without outside encouragement, and I shall endeavor to be one of them.
But, man, it’s hard.
A little over a year ago I decided my annual 12 weeks of physical therapy wasn’t cutting it. It was time to consider a personal trainer. The idea terrified me. I pictured hyper, fit ponytailed women cheerfully shouting at me for one more set. I pictured beefy men without a brain in their heads . . . actually, that wasn’t so bad. What I got was entirely different and has ruined me for all others.
LaTasha Barnes is petite but strong AF. Her background includes cheerleading, the army, and competitive Lindy Hop. She has a fierce wit and a delightful knowledge of 90s pop culture. The woman contains multitudes. Even at my fittest, I never enjoyed exercise. I still don’t, really. But Tasha changed my mindset with her good-natured encouragement that never condescended. (The workouts tailored for a body suffering from neurological mayhem didn’t hurt either.) She encouraged me to rest when I needed to and to push a little harder when she thought I could. She helped make me stronger, and, perhaps more importantly, made me believe I could be stronger, which is a really hard thing to believe from the view inside this body.
My perfect trainer was too good and smart to remain nearby for long. She is currently in grad school at NYU, and I am left behind trying to muster up the energy to do some planks on my own in spite of knowing that no one is checking in on me regularly. It’s hard, especially given my recent trough, but I did hit a milestone recently.
|That’s the glorious Ms. Barnes in the right corner.|
My appreciation for Tasha has only increased as I have sought substitutes. I have a physical therapist who is kind and knows her stuff but does not push me. If I wobble a little, I am put in time out, sitting for a full minute to think about what I’ve done. Then there’s the online MS Gym community run by what seems to be a very capable physical therapist and his sweet wife. They send me messages daily telling me that I CAN DO IT! and that THE MS COMMUNITY GIVES THEM LIFE! They are kind and well-meaning, but their sincere youth minister demeanors do not motivate me.
Were they to watch me exercise and be inspired to cry “Super Rebecca!!” I might slap them.
When Tasha said it, I felt invincible.
|Portrait of the artist after getting her own breakfast plate.|
A disadvantage to working from home is realizing just how horrible the stairs in your charming row house are as you haul your uncooperative body up and down them throughout the day.
An advantage to working from home is randomly bursting into tears without scrutiny, which I have done frequently of late.
I am in a trough, friends; it’s a sort of mini-depression inspired by circumstance. I have at least ten ideas about how to improve my lot, from meditating to eating less meat to alternating cardio and strength training to reading more. What do I do instead? Play gin rummy on my phone while listening to podcasts.
Please remember that image next time you think of me as an inspiration. Sometimes I’m strong and brave. These days I’m more likely collapsed on the couch kicking myself for being undercut with a matching Ace.
P.S. I edited this the following day with a properly fastened bra. Perhaps things are looking up?
I have many things to tell you, dear reader, but we’ll start with an anecdote from today and see if I can still do this writing thing.
Fall is finally here, and I am delighted. Temperatures in the 60s mean a more mobile, energetic Rebecca. I had lunch with a friend today, and, emboldened by the cool air, I walked 2/3 of a block to CVS afterward to retrieve five prescriptions. (Five! That’s not the point of this story, but jeezy creezy that’s a lot of drugs.) I don’t know if it was because I’d been sitting a long time beforehand or what, but my gait was the same step-draaaaaag-step-draaaaag that made me think “I feel you, man” when watching the Mummy move across the screen during Monster Squad.
|See ya later, Band-Aid Breath!|
I briefly considered buying a “President Evil: Four Years of Hell” t-shirt from the street vendor thirty feet from my destination in hopes of briefly sitting in his folding chair, but I soldiered on, mummying my way into the store and to the prescription counter. When I got there, two people were in line and another, older woman was occupying the sole chair in the handicapped waiting area. As I swayed near the foot health supplies, I saw that the woman had summoned a pharmacist to our side of the counter to offer his thoughts on the very products I was on the verge of collapsing into. “Please. Vould you look at these toes?” she said, REMOVING HER BOOTS. I averted my eyes and focused on staying upright.
At last another pharmacist arrived at the register, and it was my turn at the counter. The podiatry consultation continued to my right as I collected my purchases in a collapsible bag, which is marvelously portable but its soft straps make getting them on my shoulder nigh impossible. Keeping them there? Ha. As I fumbled with the bag, the pharmacist asked if I’d like a flu shot. Why yes! Yes, I would. Go down to the other counter? Sure. Step-draaaag-step-draaaag, don’t drop the bag. (My new cheer!) Bend at the waist and fill out these forms? No problem. I’ll just lean on my elbows while I sign here. Oh, and here, too? Awesome.
“It will be twenty minutes. Is that okay?” “Absolutely. If I can sit.” Shoeless Joanna was still in the handi-chair, so the cashier gave up her stool for me. I was thrilled to have a seat, but hoisting myself onto it after an extended period of standing was tough. Once I got up there, my seated companion notice me and my cane. “Oh, vould you like this seat?”
Folks, it goes on. I had to get up AGAIN to fill out more flu shot paperwork during which time an able-bodied someone sat on the stool, so I returned to the newly-abandoned chair. Foot lady disappeared only to reappear with two pints of ice cream and a Metro Weekly she desperately wanted to give away.
I finally got my damned flu shot and cannot sufficiently thank the woman who came to where I was seated to administer it. Feeling victorious, I tried to stand, bracing myself on the arms of the chair and promptly being pulled back down. Twice. Because my bag, which I had at last successfully pulled onto my shoulder, was resting on the arm of a chair. A lady in line offered help. I cheerly declined and slunk out of the store to climb into the awaiting Uber. (And I mean climb–it was an SUV.)
Even amid the colorful population at our local CVS, I felt like a complete mess. Some days my body does not feel like my own. Man, this is one of those days.
As I discussed in my World MS Day Video, I’m a big fan of throwing things at the wall until something sticks when it comes to improving my physical condition. If a treatment is safe, reasonably priced, and promises not to be too painful, chances are I’ll give it a try. I love it when friends send me articles about new MS-related drugs or procedures. I cannot be bothered to keep up with every MS-related development. I have recipes to make and tv shows to watch, dammit! Information is good, and it’s nice to be thought of. A friend got me to try acupuncture, which wasn’t my jam but was definitely worth pursuing. A friend, who also has an auto-immune disease, recommended cryotherapy after trying it herself. It sounds a little bonkers, but I may give it a shot (especially since I have a coupon).
Advice from friends is easy to take because I know it comes from a loving place. And because my friends are not preachy know-it-alls.
Yesterday at work, I told a colleague that my recent fall was the impetus for our new kitchen first aid kit. He immediately replied, “You know what you need to do. You need to seal up that gut! I’m telling you, look at the GAPS diet. Cut the carbs. It’s all leaky gut!” I smiled and said, “Well, I’m working on lowering my sugar intake for now.” “Yes, sugar is bad! But the carbs . . . ” I have heard this speech before. Every time I smile. Feign interest. Thank him for his thoughts. I know his need to share this information comes from a kind place, a desire to share what has worked for him . . . so why do I find this conversation so frustrating?
A few reasons. First, we are not friends. A friend would know that the day I give up carbs will be the day cryotherapy is offered in hell. Also, his tone is awful – this is what you need to do. I don’t mind being presented with an alternative therapy, but phrasing it as a suggestion rather than a foregone conclusion goes a long way. Finally, we’ve done this dance before. If I haven’t cartwheeled to his office shouting about the wonders of bovine colostrum by now, perhaps it’s time to let it go.
|This is an “empathy card” from Emily McDowell. You should buy her stuff. It’s awesome.|
A different and yet same-ish encounter happens every twenty or so Uber/Lyft ride. The driver will look in the rearview mirror and say, “What is wrong with your leg?” I explain that I have Multiple Sclerosis. And then the fun begins. “I have an aunt who had Multiple Sclerosis, but she had faith and prayed. And the family prayed. Now she is well. You must pray!” “Jesus will take care of you! You have to pray! And He will care for you!” “You know, scripture says . . . ” I smile. Thank them for their kindness. Exit the car carefully.
I know people say these things (Everything happens for a reason; God will not give you more than you can handle; Jesus take the wheel — just kidding about the last one) because they believe them and believe they will comfort the listener. And I imagine many listeners are indeed comforted. But if, like me, you’re one negative news report from making the transition from agnostic to atheist, these interactions are awkward at best.
I am happy to accept strangers’ (and friends’!) prayers, blessings, and even wacky treatment suggestions. I do so with an open heart. Just please don’t tell me what I should do with my body — or my spirit.
|More from Emily McDowell. Seriously, her cards are the best.|
Hi there! Among the many gifts MS has bestowed upon me is a less than reliable bladder. Having to walk all the way to the ladies’ room is sometimes a hardship, and I wonder if maybe the men’s room could be converted to unisex. Thanks for your help.
|A = office * B = men’s room * C = women’s room * P! = you get it|
This morning I rose promptly at 7 instead of asking Alexa to perform all of her tricks — news, Jeopardy!, jokes — as I usually do to delay facing the day. I showered last night to speed my morning routine in the name of arriving at my infusion center at 8am, thus minimizing the amount of time I have to make up at the end of the day now that I am out of paid leave. #newjobproblems
I’m back to the infusion center I like. It’s a part of Arthritis and Rheumatism Associates, which ensures I think of Uncle Wiggily every four weeks. I go in, fill out a form about my abilities/sense of well-being (today I’m a six on the zero to ten/best to worst scale), and then settle in for 90 minutes of screen time and the drip, drip, drip of the drug that’s helped my disease steady for the past three and a half years.
|“Uncle Wiggily wants to be cured of his rheumatism. On the way to Dr. Possum’s office, he has many adventures.”
– The Uncle Wiggily Game, © 1967 Parker Brothers
Today’s cast of patients was familiar at first — two young women receiving RA meds and an older lady in a wheelchair whose condition I was unsure of. Usually if folks take a pre-infusion dose of Benadryl, it’s a good bet that it’s RA, but some skip it. I’ve run into only two fellow MS-havers in my years of infusions. This morning brought a brand new experience. A mother and child of eight, I’m guessing, came into the infusion room together. I initially assumed that mom had brought the kid due to lack of child care, but then I noticed the sobbing. “I’m sorry. This isn’t our favorite day,” the mom told the nurses.
This girl was terrified, clutching to her face a stuffed sheep with a silky underbelly as she climbed onto the orange-y tan vinyl infusion chair next to mine. Her mom spoke quietly: Look at me. Breathe. It’s okay to be scared. You can hold my hand. There would be quiet for a moment, and then the stuttered inhale followed by a squeaky moan and nose wipe on that poor sheep. Those are the sounds of trying to be brave but knowing you’re failing. In a futile gesture toward privacy, the mom pulled the curtains I’ve never seen anyone use around the chair. A wonderful nurse came over, telling stories of other children she’s worked with, some who even learned to put in their own IVs! One was later prom queen! “I’ll make you a deal: if you stay very, very still, then I’ll be very, very quick.”
I’m an empathetic soul, so my eyes welled up on my side of the curtain. I can’t be that close to palpable fear and sadness without it creeping into me. Poor kid! I thought. I remember being terrified of blood tests! It was so hard to sit still at that age — imagine doing it knowing there’s a needle in your arm! And then my thoughts took a turn . . . Why must I wait, smiling and patient, while the nurse moves the needle in my arm, trying to hit a vein? Why can’t I sob publicly at the injustice of getting chosen in this cosmic game of Duck-Duck-Goose? Why do I have to go to work and pretend that everything is fine even on days when I am scared out of my wits that I will never be able to make a full meal without help again (more on this later), when my energy is completely sapped by heat, when I can’t seem to walk three steps without tripping?
Sometimes I just want someone to wipe away my tears and promise to take me to ice cream later.
|None of these toppings were offered, BTW.|