Freaking out

10 Things I’m Afraid Of (With MS)

Recently I ripped off the popular podcast Ten Things I’m Afraid Of by posting my own morbid list on my Insta stories, but with the added qualifier ‘with MS’. Because everyone already knows centipedes and talking on the phone are scarier than death.

Send a text like a normal person.

If you have MS, a healthy fear of prescription costs, PML, and progression are probably already on your radar. Rest assured this light-hearted list is not meant to jack up your anxiety about everything that can go wrong when you have this disease. This is about airing my own brand of neurosis that maybe some of you can relate to. If you don’t have MS, consider this tally a touch of insight into the day-to-day drama of coping with a chronic illness.

Ten Things I’m Afraid Of With MS

1. Dropping Things

I drop stuff all the effing time. Ask The Banker or the dog how many times a day I drop my cane on the hardwood (it’s 87) and they will slowly shake their heads in silent rage. Sometimes I drop something, pick it up, then drop it again. If I’m in a good mood, I assume the universe is providing me with free physio, then give myself permission to skip the gym. That’s a level one drop.

A level two drop is a bit more consequential. Like the time I dropped my cute cigar-box purse at a production of Mary Poppins spilling all my tamps and caths into the aisle. Despite my protests, the stranger-man next to me insisted on picking up my swag until he realized what he was touching. That’s fine, he should grow up.

Because the very, very worst, level 3 shit to drop is something that breaks. Especially if that something is full of liquid, like smoothie or vase-water, and I’m all alone and have to clean it up before someone eats broken glass and the floor turns blueberry. My lack of balance and shoddy hip-flexors make this a Survivor-level challenge where the only reward is that the dog’s not bleeding and I no longer have breakfast.

Oh, what treasures do you hold?

2. Rain

My fear of rain as someone with MS has everything to do with not wanting to wreck my blow-out, because blow-drying my own hair is a fucking nightmare, and it’s impossible to wrangle an umbrella and a rollator at the same time. When I posted this fear on Insta, someone was like, why don’t you just get a rain hat? I don’t know, Becky. Why don’t I just leave the house in a shower cap?

3. Jekyll and Hyde-ing

One day, about a month ago, I woke up without pain. As I found myself assessing this unfamiliar phenomenon, I also realized I’d somehow slept through the night. I felt like singing, or at the very least not scowling. And then I was like, hold up. What is this feeling and who am I?

What if I have this whole other (way better) personality without pain and insomnia? I’m a skosh afraid that having MS facilitates a bitchier, harder-to-be-around version of moi than the ray of sunshine I might have been in an alternate reality. Damn, Becky. I’m sorry for my tone earlier. Thank you for the suggestion.

Update: I just googled rain hats, and Becky can go to hell.

4. Being cold

I’m cold right now, but I’m also afraid of being cold in the future. MS means my temperature regulation is broken, but my anxiety is working just fine. I can work myself up into a state in July thinking about how much January is going to suck in this cold Canadian tundra. Recently, my order of Little Hotties got lost on Amazon and I had to go without this life-saving, foot-warming product for five excruciating days. You don’t even know. Now I feel like I have to stockpile them so that this never happens again. I’m afraid my fear of freezing will turn me into an MS Doomsday Prepper.

5. Speaking of doomsday prepping…

I have too many purses, so I try to make sure there are a few disposable caths in every bag (too much catheter talk? welcome to MS), but occasionally I fuck this up (not to mention I recently discovered that caths for real expire, which does not help my doomsday plan).

One time, after I’d left to do my Lemtrada labs and get a hair appointment, I realized I was sans Cathy when it came time to give my urine sample. This was especially troubling because I’d been saving my pee for the test, and I needed to go. No worries, I thought. I bet the lab has some. They did not. Fortunately, we were next door to a pharmacy. But when I asked, they were like “ew, no”. Okay, they didn’t say ‘ew’ but they might as well have.

That forgotten pee-mate almost caused me to pee my pants (ironic, I know), forced me to return to the lab with a urine sample, made me miss my hair appointment, and cost me an extra $14.67 in round-trip Ubers. In addition to the price of the tiny plastic tube (you don’t wanna know), this particular pee cost more money than the time I was in France and didn’t have any coins for the pay toilet AT A BAR, which meant I had to buy a drink just so I could pee, creating a vicious cycle. Bien joué, Frenchie, bien joué.

6. Getting a cold

If you need a refresher on what getting sick can do to MS, please click here. My fear of flu makes me terrified of hospitals, holiday parties, and most of all, children.

“What’s that scent you’re wearing?”

“Oh, do you like it?”

“No.”

“That’s because it’s Purell and Clorox.”

It’s not me. It’s you.

7. Seatbelt sign

There are a million things to do before a big trip, and they all come to a head at the last minute. That sigh of relief you breathe once you’re through security, checked into your flight, and ready to check out of your life is what a cocktail at the airport bar tastes like. Oh, my flight’s delayed? That’s cool. I have time for one more vodka soda (soda because it’s important to hydrate). Bonus points if you’re flying Air France where I defy anyone to not drink the wine in those adorable mini bottles.

So, it’s pretty freaking rude, airlines, to ply us like this and then tie us to our chairs and turn on the seatbelt sign. You know you’re just messing with us anyway. Like, I’m not that good at walking, but even I feel like I can handle it basically every time.

I stand with you, Gérard Depardieu.

8. Stranger danger

I don’t have any confirmed cognitive decline; the lesion load on my brain is light in comparison to that of my spinal cord, where all my damage likes to party. I will cop to having difficulty focusing on any task when there’s competing noise. If you want to talk to me and the radio’s on we’re gonna have a problem.

My real cognitive problem is that I don’t recognize faces. Like, unless we’re related, or we’ve made out (and even then), I’m not gonna recognize you. Dear everyone in my building, I may have had five separate convos with you in the elevator this month, and if I see you at Ezra’s Pound I won’t know who you are.

My ability to rock a blank stare whenever someone thinks I should know them has earned me the reputation of a witch with a b. Luckily, that’s kind of who I am anyway.

9. My world shrinking with MS

MS can take a lot. What’s more maddening to me is what’s taken that doesn’t have to be. As my mobility needs change, I fear my world getting smaller as fewer spaces are available to me. I fear being disabled by my environment as much as by my body. Ok, this one’s a true bummer. Let’s move on.

10. Fish sticks or salisbury steak?

I mostly subscribe to the philosophy that fear is a waste of my imagination; but sometimes I let my flights of fancy run the show, and that’s when I visit a future day-mare where I don’t get to make all my own choices. Seems reasonable, right? Here’s where I lose you.

The choices I’m prematurely wigging out over are food choices. Like, I did not spend the best years of my life cultivating a palate that appreciates stinky cheese and truffle salt only to spend my senior years in a care facility eating boxed potatoes and off-brand chips. I am way less worried about condescending nurses who speak to the elderly in baby-talk than I am about the possibility of being served baby-food. Did you know that most of these places don’t even have a bar???

So, what are you afraid of with MS?

Roosevelt famously blah blah’d about fear being the real enemy, and I will co-sign that fear is the worst symptom of MS. That said, I feel like Roosevelt didn’t totally fact-check his whole thesis, because needing to pee without access to a bathroom is hardly unjustified terror.

Do these fears resonate? Comment on what you’re afraid of with MS, and check out the original podcast.

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Will I Ever Stop Freaking Out About Progressive MS?


I haven’t written much lately because I wasn’t sure I had anything nice to say and we all know the internet is no place for negativity. The thing is, I’m going through a bit of a thing. A crisis maybe, and a graduation of sorts, to a new level of disability. After 15 years it’s time for me to start using a walker on the regular. And somehow there’s still part of me that is utterly stunned by this. Fifteen years with an MS diagnosis and though it feels like forever, this has been a relatively quick trip to Walkerton (even as I realize there are sadly, many who’ve reached this town even faster). 


I’ve only just gotten used to using a cane and it’s time for a walker. Well, a rollator is what we’re supposed to call them now. And if the cane has taught me anything, it’s that there’s no going back. At least with MS, these things tend to be permanent, or they stick around until a new level of suck is reached and a more advanced assistive device is required. It’s that whole graduation thing but with less pomp and more circumstance. For there will be no keg party, no drunken make-outs and no prom dress at this grad. My only diploma is a bump in my EDSS score and my award, a clunky mobility aid. Nobody wants to stay up all night celebrating this milestone. Although drinking until I barf does seem rather tempting right about now. 

For several weeks as I waited for Rolly’s arrival (thanks ridiculously slow health care system for giving me ample time to emotionally process all this), I was able to see the bright side. I told myself a Rollator will afford me more freedom. Greater endurance. A cool basket to put stuff in. 

No big deal.

But then a week ago, in the middle of all this healthy acceptance and well adjusted adjusting, something switched. I found myself assigning all kinds of meaning to this situation, leading me to freak out over a cheese plate and a pitcher of sangria on the balcony. The sudden change in my perception was so unexpected, I knew it had to be poisonous. But like the boozy fruit juice in front of me, I couldn’t stop myself from picking it up and taking a big sip of hysteria. Call it a walker or a rollator or whatever you want. Turns out needing this level of assistance just to get around is totally a BFD.

Like always, The Banker did his best to calm me down but I was having none of it. He countered each of my anxieties with hopeful reassurances and hunks of baguette smeared with brie. He told me for the thousandth time we are in this together and insisted his life is at least a million billion times better with any version of me in it. At least. He urged me to try the pâté. I remained unconvinced. He poured more sangria and that helped, but I can be very convincing, and finally I managed to make both of us cry. Somehow we finished our drinks and all the charcuterie and by morning I could breathe again. I’d purged all the grief from my system. I was ready to accept this breakup with independent walking and move on.

Or so I’d thought. We all know the first breakup never takes, and the next night I found myself staring at the ceiling at 3am thinking about what comes next. Trying to hold it together. Imagining the worst and not comprehending how I will possibly cope. Because the very, very worst part of all this is What comes next? 

It’s always what comes next. 


The next night I lay awake doing some random made-up math on how much time I think I have left. This was tiring because I’m not good at math, but not tiring enough to put me to sleep, so I got up to hang with the dog. Not surprisingly, she didn’t have any sage advice. She slept next to me, not judging, but occasionally waking to engage in some questionable self grooming. Ugh. I mean, clearly, she has her own problems.

Then after three sleepless nights I decided not to take any chances and chased a handful of zopiclone with a generous glass of red wine. Guys, this is not a substitute for medical advice, okay? This is a blog.
I slept better (sort of), but was still one more teary meltdown away from turning the corner. The one where I ugly cry and insist I’m not strong enough to deal with this. The one where I panic that I’m running out of time, and sob about the unfairness of it all, convinced my best days are behind me. The one where I conclude I am not okay. Because NONE OF THIS IS OKAY.

(deep breath)

So. Much. Drama. Barf me to death. So I’m freaking out. Again. Sorry, everyone that loves me or has to be around me. I know this gets boring. But does anyone take this in stride? (No pun intended) It’s not spilled milk. The reality of MS is that not everything gets lost at diagnosis and grieved over all at once. It’s like getting a new disease over and over again.

I thought I was cool about this and then it arrived and I started to hyperventilate. The dog is in the picture to distract me from how fucked all of this is.


Though I’m still not really sleeping, I am starting to see my way out. Not because my body is stronger or my disease is slowing down. But because I can’t stay in this darkness for too long. And something I read last night seemed to click. 

LOVE WHAT YOU HAVE 

(thanks Andy, sorry for all the swearing)

We’ve all heard this before. Don’t hate what you don’t have. Love what you have. Somehow this is different from Be Grateful For What You Have, which sounds more like a bossy threat. Like, you’d better appreciate what you have before it gets snatched away – and isn’t that just the epitome of MS? Where any ability you have can be taken in a heartbeat? It can be challenging to be grateful for what seems like it’s only on loan when you know there’s a creepy repo man lurking around the corner just waiting to make his move. 

Love what you have feels different. If you love something you don’t just acknowledge it with a polite thank you. You have to take care of it. You have to be kind to it. You have to do something – it’s not passive. Love is a verb. Could I give my MS a hug instead of a side eye loaded with vitriol? Love is patient, love is kind…that’s from the Bible, bitches, so you know it’s good. If I can find love for what my legs can do for me today, can I be patient and kind to them? 

As I struggled to get to sleep last night I started making a mental Love What I Have list. I tried really hard to not take anything for granted, to not make this a ‘love what I have left’ list. I thought about The Banker and the dog and the tremendous comfort their love for me creates; the big obvious haves that go to the top of my list. Someday I will certainly lose my pup. She’s 11 years old. Suddenly I realize that knowing this doesn’t make me love her less. I don’t spend the time I have with her consumed with anxiety about what life will be like without her. I will deal with that later. That is a pain and a loss for Future Me to deal with.

Encouraged, I kept going with this list. I wanted to identify more than the things outside of me. I wanted to find love for the things that are maybe not the same as they once were. I wanted to find  love for the things MS is trying to steal from me. 

I decide to love that I got dressed and into bed by myself. I decide I love that I am independent. I resist the urge to frame this as ‘still’ independent because it implies impermanence, it implies ‘for now’. I love that I am independent. Period. That used to mean Girl Power but now it means I can walk to the bathroom by myself. Make coffee. Put my socks on. It’s an effort but I somehow manage to feel this without bitterness. I am truly thankful I can walk at all. And as tempted as I am to dwell on how desperately I want to walk forever – thinking about it takes me away from what I have today and puts me in an unknown, scary, future place that seems dark and impossible. It’s so nauseatingly throw up in my mouth cliché but I don’t have the future, I only have today.  Sometimes I think I’m selling myself a bunch of Pollyanna bullshit but the only thing more exhausting than convincing myself of some Pollyanna bullshit is spiralling into despair. It’s better to decide I in fact have enough green grass right now. It’s time to pick myself up off the floor. 

I don’t want to fight with my legs. I don’t want to resent them or feel frustrated. I want to love them. I want to slather them in lavender scented l’Occitane and whisper Thank you. I know you’re trying. It’s not your fault. You deserve beautiful shoes and regular pedicures.

Remember what I said about the very, very worst part of this? That is Future Me’s problem.

Maybe this graduation does deserve a party. After all, we mark transitions with traditions. So. Who wants to have a glass of Pommery?







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MS Meltdown in 3, 2…ugh, no. Not today

I started to write about how tempted I am to give in to my simmering emotions and just let myself freak out. Frustrated with how poorly my legs are functioning, how hard it is to walk, to stand, to get dressed, to get anywhere. If I look at the calendar I’m totally overdue for my bi-annual trip to Losing My Shitsville. I couldn’t be blamed. 

But what’s the BFD? MS is old news. I turned my attention to what’s going right in my life. My essential needs are met. The people I love are safe. My puppy is snoring happily in my lap. I have wine. I like my hair. Suddenly I felt less like having a cow. And I deleted everything I’d just written.

Then The Banker, who didn’t even know I was on the edge of a meltdown, texted to tell me he’s leaving work early so he can drive me to my singing lesson. He doesn’t want me to have to negotiate this freezing, slippery rain by myself. 

Hmm.

Yes, it fucking sucks that if I want to cross my legs I need both arms to lift one over the other. It fucking sucks that I need a cane on one side and a railing on the other just to heave myself up one tiny step. It fucking sucks that I depend on all the walls and furniture in the house to keep me upright. 

But that’s enough. I’ve acknowledged the bad and now I will put on some lipstick, kiss The Banker hello, and use my not entirely broken body to sing some big, loud notes. Because singing is pretty therapeutic for me. Maybe because it’s a lot like screaming.

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How Come You Never Freak the F*ck Out?

I had a meltdown. One of those heaving, sobbing, gasping for air freak-outs that comes along once (haha, I wish) or twice a year when things seem impossible. A popular theme for my bi-annual trip to Losing My Shitsville is my ever present fear of needing permanent wheels (or worse, but that’s a good start). It’s an anxiety taking up a lot of real estate in my imagination lately as I struggle to walk a straight line and remain upright for longer than a few minutes.  

On this particular day I was ruminating over the fact that I want better for The Banker. I really mean it. He’s an awesome guy. Tall, dark and handsome, he has a good job. He’s funny and kind and oh my god, why am I trying to sell him to you? He has a superfluous nipple, okay?

this guy is zen af

So how did The Banker get such a raw deal? 


Don’t get me wrong. I’m a god-damned prize. But as time goes on, I fear The Banker’s love for me might turn him into my nurse and I don’t want that more than I don’t want to be alone. 

Through tears, I tried to tell him this, but he is unflappable. First, he laughed at me and my silly concerns. This was annoying because, I wasn’t kidding. I’m serious. But this guy, he is so steady, so even. He never seems to get upset. It was only when I said through gross, snotty tears,

“What would it take for you to just freak the fuck out???”

and he held my face and made me look at him

“Losing you would make me freak the fuck out.” 


I took a deep breath. I wiped my nose on his shirt. I calmed down. I believed him and at least for a moment, I felt better.

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