Last week I decided I wanted to go to the seriously spooky, grown-up haunted house Legends of Horror at Casa Loma, Toronto’s gothic revival mini-castle that sits just up the street from where we live. For most of October, we could hear the terrified screams of visitors to the exhibit from our balcony, and I wanted in. I had an inkling that this indoor/outdoor 2 kilometre ghost-walk wasn’t maybe the most accessible activity in town, but I ignored that inkling and bought tickets anyway.
How stupid could I be?
The day before we were set to go, I went back to the Legends of Horror website just to see how prepared I needed to be. I read something advising guests with “physical ailments” not to participate. That seemed a little too broad and ignorant for me, those of us with so called “physical ailments” not all sharing the same limitations or abilities. Plus, they also said it was “not ideal” for pregnant women, which lead me to seriously question what kind of person was making the decisions about who should and should not participate in what’s really just some interactive theatre.
I emailed the venue to get some intel, and was promptly told the exhibit is not recommended for walker or wheelchair users; that there were some stairs and tunnels. This still wasn’t very specific. Like, just how many stairs are we talking about? Note: Sometimes people with mobility aids can do a few stairs.
I was conflicted, and not really sure if this would be too much for me, but the thought of sitting at home with Halloween FOMO while my friends were out having fun, was too much to bear. And since I don’t have a walker or a wheelchair (I have a rollator and a transport chair), technically, the suitability information provided didn’t apply to me. Let’s do this.
The Banker suggested we bring Optimus Primemy convertible transport chair; that I walk as much as I was able; that he would push me as needed, and carry OP up any stairs we might encounter. Problem solved. I emailed the venue with my awesome new plan, and asked again just how many stairs we were talking about.
This is what they said:
“I would still suggest that is Not a good idea to carry that up and down the ‘uneven terrain’ that is part of this Legends of Horror experience.”
Aside from the callous reference to Optimus as “that” (rude), this was GREAT NEWS. “Not a good idea”, is not a hard no. And those quotation marks around uneven terrain? That was enough to convince me that the terrain might actually be pretty even. Grammar matters, people. Plus, they never did answer my question about how many stairs there were, so I decided it was two flights. Two-and-a-half, max. It would be difficult, but I could swing it. Because here’s the thing Casa Loma doesn’t seem to get: People with mobility aids have a whole spectrum of ability. Not all disability is the same, and it’s not cool to just decide something isn’t available to everyone. Just give us the facts, and let us figure it out for ourselves.
In defiance of MS
The night of the show, we bundled up and got ready to get scared. We rolled up to the venue, and a visibly alarmed ticket-taker took one look at OP and said, “Uhm, this is one-hundred-percent not accessible”. I was like, “Whatever. We’ll figure it out”.
And we did. In the end, it was like, 15 flights of stairs, in the dark and under a fog machine. And what took most people an hour, took us well over two, plus a lengthy break at the bar at the midway point. It was actually completely unreasonable for me to have attempted this.
And I’m so glad I did.
In a disease where decline seems inevitable, it’s hard not to measure the passing of time by a yardstick of things I can no longer do. Anything in the grey area of what might be a little too tough or even reckless, forces me to say to myself, “If not now, never”.
So what? It’s just a stupid haunted house. (It was not stupid, it was freaking amazing.) A fun night out with friends doing something a little different, is an experience most take for granted. But there’s this feeling I sometimes get when I’m most aware of MS insidiously creeping up on me, and chipping away at my options. It’s the bittersweet realization that I’m doing something I’ll never do again. It’s the unspoken knowing that, this time next year, I’ll not be physically able to do whatever it is I’m struggling to do this year. Experiences take on added meaning when you realize:
This is the last time I’ll do this.
I didn’t think this haunted house thing would turn into a bucket list accomplishment, but I woke up the next morning feeling satisfied I’d experienced something unique and cool, and like I’d kicked some ass, those stairs being way scarier to confront than the wailing banshees and severed heads trying to spook us at the castle. My ill-advised night out was a kind of Fuck You to MS.
I must thank The Banker who dodged zombies to haul OP up and down all those steps like a damn hero. And thank you to my squad of patient friends, Trace, Lisa, Chris and Peter: I realize it’s extra terrifying to slow-walk through a graveyard. Thank you for not handling me with kid gloves; for not trying to talk me into the cautious, reasonable, thing, and for supporting my choice to keep bulldozing ahead, even when it seems really fucking stupid.
Dedicated readers may remember this (slightly modified) address. We’re all throwing shade at the past year and the need for optimism feels even more relevant as we dip a nervous toe into the future. Or maybe I’m too hungover to come up with anything new.
It’s the first day of a shiny new year. The day when all the mistakes of the previous year are behind us, and anything seems possible. By now, a month of partying has been put to bed, its memories tucked safely away on Instagram. My liver and credit card are holding hands and whispering “It’s over. We’re safe now”. The fun is over and as we face that icy, unforgiving bitch, January, it’s hard not to wonder why a new year is something to celebrate when the fête is finie. A beginning that doesn’t require us to actually start anything new. Good news if you just need a mental boost, to symbolically wipe the slate clean of all the injuries and injustices of the past, while you write the wrong year on your cheques for the next month. This is your holiday. You don’t have to change. That’s the gift of New Year’s. It’s up to you.
Or don’t. Whatever.
For others, a new year means waking up January 1st in last night’s makeup and one shoe, rubbing mascara from your eyes while looking in the mirror and making RESOLUTIONS. Because a new year means a new you. One where you can get fit, find love, take that improv class, quit day drinking, stop using LOL and start being nice to the cat. I don’t know what you’re into. The point is:
Anything is Possible
Many start the year with big plans only to find themselves failing by February. So, why bother with resolutions? Aren’t they just setting us up for failure? Maybe. But giving voice to our hopes and dreams, saying them out loud, is an important step to realizing them. Even if we never keep our pledges, the act of making them means we take stock, examine what we like, and maybe experience a few moments of gratitude, before rejecting whatever it is we don’t like.
We get to know ourselves better for having named our convictions; for declaring just who it is we want to be.
In chronic progressive illness, like MS, the measuring of time is tricky business. By definition we’re supposed to, well, progress. Each calendar year is marked by diagnoses, tests, treatment régimes and abilities gradually lost. Ticking time can be a scary contemplation. Resolving to regrow myelin is more futile than resolving to lose those last five pounds. There are certain things over which we simply have no control.
So this year I’m choosing simple goals. Despite disease and in my never ending pursuit of the best possible life, I will reflect on what it is I love to do, and figure out how I can do more of it. I will think about the people who lift me up and make me laugh, and commit to spending more time with them. I will pay attention to what doesn’t make me feel good, and do my best to avoid those things. With hope and confetti still in the air, today at least, I will say fuck fear, because dwelling on the worst case scenario is a waste of my imagination.
Growing up, Christmas in my family was a BFD. It still is. Like an insanely, big deal. My mom gets up at 5, anxious to tear into presents and eat pie. My dad only encourages her by throwing open the sash (pre-dawn, natch), to bellow “Merry Christmas”, causing all the dogs within a 1/2 mile radius to lose their shit. Compared to these two, Clark Griswold was a hack. I can hardly be blamed for the sugarplums that dance in my head. It’s in my DNA. Unfortunately Multiple Sclerosis is also in my DNA, so being able to fully participate in all the holidays have to offer is easier said than done.
Santa’s secret? It’s mostly Irish cream.
Of course, what happens in December starts in November. And everything seems possible in November. I eagerly say yes to it all, seeing no problem in filling my calendar with concerts, parties, dinners and overall excess. But naive November, with its fall leaves and sense of can-do, is over. It’s mid-December now, which means colds, calories, and credit card debt. The half-decorated tree sits unwatered next to a mound of unwrapped gifts and a sink full of dishes, and somehow I thought I could go to not one, but two parties tonight. And, oh yeah, I promised to bring homemade cookies.
Who do I even think I am?
Rather than dropping my phone in the toilet and hiding under the covers for the next ten days (OMG there are still TEN DAYS of this madness), I’ve decided to come up with a plan. Turns out, my main concerns during the holidays are really my main concerns IRL, but in December they’re jacked up on cheap champagne.
I won’t have enough energy to entertain or shop for gifts.
I won’t have the strength to do all the fun things. FOMO.
People who haven’t seen me for awhile will be startled by my progression.
I’ll look drunk without the benefit of actually being drunk.
Thankfully, all of this shit can be managed. Herewith:
How to survive the holidays with MS
Did you know you can get a turkey on the internet now? Yup. A turkey. I’d like to be the kind of girl who can pull off a turkey dinner. And I am. Sort of. Secret sharing time: after deciding it would be super fun to host said supper, when the time finally came, I didn’t know how I was going to will my body into cooperation. Instead of bailing, I unapologetically ordered a pre-cooked turkey. And why would I apologize? I’ve cooked 4 turkeys in my entire life and Pusateri’s has cooked at least 7 thousand. They definitely know better than me. The goal wasn’t to prove I’m an awesome cook (I’m not). The goal was to eat a skin bowl with some of my besties and play fairy godmother to my godchildren. Fait accompli.
Drink through it
I know what you’re thinking. Here she goes telling us how alcohol is the solution. And you would be right. But downing 2:1 water for every cocktail is a life hack. You’re welcome. Because changes in my diet will affect how I’m feeling, I really do try to stick to my exercise and sleep routine. And to avoid the side-eyes of those who will blame my loopy gate on liquors, I like to do most of my drinking sitting down.
Stay away from the mistletoe
If you ask me, there’s simply too much touching at Christmas. At a time when passing the peace can feel more like passing the plague, a good quality hand sanitizer is my best accessory. And all the extra scrubbing means I also need a great lotion. I love my l’Occitane.
Duh, I know. This one is so obvious, I don’t need to plug its benefits, but it’s the reason why anyone who gets a gift from me, ever gets a gift from me. Santa is a MacBook for whom I don’t ever have to put on a bra.
People are coming over. I’ve known for weeks, and yet here we are shoving shit in a closet. Everything in its place. Sometimes that place is a sky-high fire hazard behind your bed.
Like pre-drinking, but cheaper. Even if I don’t actually fall asleep, it’s important for me to be totally off my feet for an hour before going out or having anyone over in the evening which is typically a challenging time of day for me.
Know when to say Fuck it
There’s good, and there’s good enough (this blog post). I accept that I can’t be awesome all the time and maybe not everyone I’ve ever met is going to get a Christmas card from me this year (Spoiler: Nobody is). And, if I finish wrapping a gift only to realize I miscalculated how much paper I’d need, leaving a small exposed square, so be it. I already ruined the job anyway when I ran out of Scotch tape and decided to use painter’s tape.
It’s important to make time for loved ones and Netflix is no exception. Because Netflix gets you like your family never will. I like to put downtime in the calendar. It helps me recognize it as a priority.
Just say No
Sometimes I cancel plans. I don’t like to and I feel guilty, or I don’t. Because I know my presence isn’t going to make or break a great shindig. Plus, secret surprise – everybody wants to bail on stuff this time of year. Let yourself off the hook and then don’t be a dick the next time someone flakes on you. (Unless it’s my birthday. Seriously, I will cut you.)
Just say Yes
Because often the best nights are the ones where we rally. To get myself out the door when it feels impossible, I always plan a GTFO strategy. I tell myself I’m going for 15 minutes. Most of the time, the energy somehow shows up once I get to the actual event. Just show up.
You made it
I have a lot to look forward to as we wrap up this year, and when I look at my calendar and think about all the friends and family I’m going to eat, drink and be merry with, I’m reminded that it doesn’t matter if my base boards are gross (they are). I’m taking my niece to see her first Nutcracker.
Merry Christmas and Happy Holidays, Trippers. May you drink too much champagne and kiss someone lovely at midnight on NYE.
While it’s true you cannot spell ‘pedicure’ without ‘cure’, a fresh coat of polish and some attention to your cuticles is not in fact, a cure for drop foot. Yes, I almost power-kicked my last pedicurist in the face, but that was an involuntary reflex and not a sudden return of leg strength. Calling it reflexology might make it sound more legit but your myelin destroyers won’t be fooled. And neither will your benefits provider. I know this for sure because I tried to claim my last spa visit and my insurance company was really crusty about it.
MS Myth: You can’t get more than one disease at a time
I believed this was a thing; because everyone has something, but nobody has two things, right? Having MS was my thing, which meant I was invincible to other calamities. I actually used to say this out loud.
“I don’t need a dentist. I don’t need sunscreen. Duh. You can’t get more than one disease at time time.”
So I stopped flossing, thought about taking up smoking, and was playing fast and loose with my breast exams. Then, out of nowhere (okay, Poland), I got diagnosed with a mild arrhythmia called Wolff Parkinson White. All I heard was Parkinsons and lost my freaking mind, until it was explained to me that they’re not really the same thing. Technically, they’re not even kind of the same thing. (Which is really what the lab technician should have opened with instead of sending me on my way and telling me to follow up with someone who speaks English.) My life had flashed before my eyes, and now I wear my seatbelt, take my vitamins, and obsess over my own mortality all the damn time. Turns out this paranoia isn’t unreasonable, because science says that having one auto-immune disease increases the risk of acquiring a second (or third…) auto-immune disease. Quick, somebody get me a lottery ticket.
MS Myth: You have to fight to beat MS
Fight whom? Myself? My brain? Should I punch myself in the spine? I don’t enjoy conflict, least of all with my own body. I don’t know how to throw a punch, and my failed kick at the pedicure girl missed by about 6 inches and smudged my polish in the process. That is a lose-lose fight. I guess I could slowly poison my liver with booze? That’ll teach my no good body to mess with me.
Homer gets it.
MS Myth: There’s a cure
Wait, what? Tell me more! How have I have not heard of this?
Because there is no cure. There are some treatments that are effective for some people. I swear to you; I know all about them. Please stop telling meabout something you sorta remember in Russia, or maybe it was Lithuania, but really it was just the headline of an article you saw on the inter webs; and anyway, I am not going back to Poland. I promise you that when there is a cure it is utterly impossible that I will first hear about it in a link you tweet me. Stick to updating me on the latest #timesup jerk, or why Meghan Markle’s dad is ditching his own daughter’s Royal wedding. This is the breaking news I trust you to deliver.
MS Myth: Getting liquored and engaging in séances will give you MS
Every super hero has an origin story, and as the heroine of my own, I’d convinced myself that some cheap red wine and a sketchy book of spells gave me some bad karma when I started experiencing my first MS symptoms one week after Halloween. I wish I were making this up, but I believed in the power of my own shoddy witchcraft for at least three years. I may be a true Slytherin, but the fact is, Hogwarts isn’t real.
MS Myth: It’s contagious
I wish. Then I could give it to my enemies. Okay, I’m obviously kidding. No, I’m not.
MS Myth: Pretty people don’t get diseases
Someone actually said this to me. Turns out pretty people can also get new friends.
MS Myth: Everything happens for a reason
Oh really? Tell me more about the holocaust.
MS Myth: God doesn’t give us more than we can handle
MS Myth: People with MS are descended from Vikings
This one might be true, and that’s good enough for me to claim to everyone I know that it definitely is true. Our pets were dragons. It’s the only cool thing about having a horrible disease. Or about having super pasty skin, for that matter.
MS Myth: MS is a journey
Journey was a band that your parents listened to. Journey is a PS3 game for nerds. Journey is an affordable midsize crossover. Multiple Sclerosis is a vile disease. Calling MS a journey is an insult to the ’70’s, gamers, and sensible family vehicles everywhere. Don’t stop believing, MS sucks.
The internet is full of bad information about MS. What are some of your favourite misconceptions? Anything you wanna clear up?
It’s the first day of a shiny new year. The day when all the mistakes of the previous year are behind us and anything seems possible. By now at least a month of partying has been put to bed, its memories tucked away on Instagram. My liver and credit card are holding hands and whispering ‘Thank God. We’re safe now’. The fun is over and as we face that icy, unforgiving bitch, January, it’s hard not to wonder why a new year is something to celebrate when the fête is finie. A beginning that doesn’t technically require us to actually start anything new. Good news if you just need a mental boost, to symbolically wipe the slate clean of all the injuries and injustices of 2015 while you write the wrong year on your cheques for the next month. This is your holiday. You don’t have to change. That’s the gift of New Year’s. It’s up to you.
For others a new year means waking up January 1st in last night’s makeup and one shoe, rubbing mascara from your eyes, looking in the mirror and making RESOLUTIONS. Because a new year means a new you. One where you can get fit, find love, take that improv class, quit day drinking, start day drinking, stop using LOL, finally make that enemies list, start being nice to the cat. Look, I don’t know what you’re into. The point is Anything is Possible.
Vous pouvez même apprendre à parler français
Many start the year with big plans for major changes only to find themselves failing by February. So why bother with resolutions? Aren’t they just setting us up for failure? Maybe. But giving voice to our hopes and dreams is an important step to realizing them. A new year is a time to reflect on what’s positive in our lives and what needs improving. Even if we never keep our pledges, the act of making them means we take stock, examine what we like and don’t like. We get to know ourselves a little better and identify what’s working and what needs changing.
In chronic progressive illness the measuring of time is tricky business. By definition we’re supposed to, well, progress. Each calendar year is marked by diagnoses, tests, treatment régimes and abilities gradually lost. Ticking time can be a scary contemplation. Resolving to regrow myelin is more futile than resolving to lose those last five pounds. There are certain things over which we simply have no control.
So this year I am choosing simple goals. Despite disease and in my never ending pursuit of the best possible life, I will reflect on what it is I love to do, and figure out how I can do more of it. I will think about the people who lift me up and make me laugh and then commit to spending more time with them. I will pay attention to what makes me feel crappy and do my best to avoid those things. With hope and confetti still in the air, today at least, I will say fuck fear because dwelling on the worst case scenario is a waste of my imagination.
Lest you think this is a silly post about shoes, be advised, I am dead fucking serious.
I inherited my grandmother’s legs. My G was cool enough that we just called her G. She was self-aware enough to know her gams were her best feature. At 80, she was vain enough to insist on wearing a leg-revealing skirt and coat to an outdoor ceremony in the dead of a Montreal winter. I miss my G and her impractical dedication to fashion.
It was in this reckless spirit that I decided to throw caution to the wind and wear high heels to a Christmas party. What’s the big deal, right? Let me remind you that my last post was about how I spent a week in a wheelchair. No wonder people don’t understand multiple sclerosis. I wish I could tell you my rise to heels was thanks in part to some impressive improvements in my balance, foot drop and leg strength. I don’t know what I was thinking.
Yes I do.
I was thinking, this hem line requires a heel. That’s math. And like my G before me I understood that sensible has no place in fashion.
I know. I’m the worst. The heels thing sounds like so much bullshit. It’s shoes; an accessory. Don’t you have bigger problems?
Don’t you have MS?
Of course. Maybe that’s the cost of finding joy in small things. Sometimes small things can railroad you. But this doesn’t feel like a small thing. For me, heels represent femininity. Not for girls, this is the footwear of women. Practical and impractical, strong and sexy, they are a rite of passage; luxuries that are said to provide a sense of escapism in dire times.
Are these not DIRE TIMES?
Not to mention the power of the pump to say what mere words cannot. A stiletto can make an impressive entrance, but what about when you need to pivot on a dime, and storm out of the room with an angry staccato click-clack to reinforce an obviously justifiable rage?
Lumbering out in loafers is just so unsatisfying.
Before last Saturday, I can’t remember the last time I wore beautiful shoes. If I’d known they were going to collect so much dust in my closet I surely would have made more of an event of their last-ish appearance; drank champagne from them, or gone to sleep cradling them in my arms. My descent into flat, boring safety-shoes has been slow and insidious. I reluctantly started using a cane, while gradually sinking into a lower and lower heel. I told myself these modifications were temporary; that they were to get me through a long day. It was a desperate lie that I clung to; a way to stave off the inevitable grief.
Of course the sum of my presence is greater than that which supports me, but it is not untrue that what we wear impacts how we carry ourselves, and at least in my experience this starts with what’s on my feet (the state of my hair coming in a close second). The addition of a bulky orthotic strapped to my leg and crammed into my boot has necessitated sizing up, so not only am I required to wear low, sexless shoes, my slender Grecian toes have been transformed into clumsy Shrek feet. And I just have to accept this gracefully? What?
Over the past several months I’ve been contemplating shoeicide giving away my shoe collection. If my legs get stronger my old shoes will be out of style and in need of replacement anyway, right? But the truth is I‘m afraid to get rid of them, because maybe they won’t come back. The high heel has become a measure of something more than vanity. It’s about ability, and that’s the real devastation. I’ve lost a few battles to MS already, and I’m pathetically unwilling to wave a flag of defeat on this one.
So on this night, I tentatively donned a pair of Fluevogs. Not outrageously high, but legit heels. I extended my cane so the length would support me on the left and had The Banker on my right. I walked slowly and with concentration, feeling tall and gratified. I didn’t have many steps to take. I didn’t drink as many candy cane martinis as I might have in flats. I spent most of the night perched on a chair, legs crossed and ready to receive compliments, surrounded by some of my most lovely friends who said nothing of my irresponsible choice but only ‘Oh my God, I love your shoes’. My G would have been proud.
Whether you’re heading to an infusion centre for your monthly dose of Tysabri, getting a course of Lemtrada, or treating a relapse at Spa-umedrol, packing a great bag can make the hours and days of tedious and uncomfortable therapies a lot more bearable. Since there is no fashion mag dedicated to MS (Ms. magazine is sadly, not about de-mylenating in style), I offer you my best attempt at ‘What’s In Her Bag? Hospital Edition’. Because fashion is fun. It might be shallow and materialistic but sometimes stuff makes you feel better. Here’s what I’m packing for my upcoming five day medical séjour.
Patent leather bonus: sleazy hospital germs can easily be removed with a disinfectant wipe.
What’s in there?
Travel Water Bottle Hydration is key when being pumped full of chemicals.
Tech I don’t have to tell you to pack your iPhone but don’t forget your charger. My iPad is loaded with The Mindy Project and Gilmour Girls. (House of Cards is forbidden, because that’s a watch-together show, and I can’t betray The Banker like that.)
Pill carrier Getting IV therapy doesn’t mean you get to skip your regular meds.Pack OTC’s likepain relievers and anti-nauseants to handle unpleasant side effects.
Lip gloss Hospitals can be so dry. Chapped lips are gross.
Hand Sanitizer Hand sanny is key. Immune systems are suppressed. Hospitals, guys. Ick.
Enormous Sunnies In case you want to sleep or be ignored. Or paparazzi.
Blanket Scarf Tissue sized hospital blankets are never enough. Though I do love that they come from ovens.
I swore I would never write a blog. I already talk too much and am sick of hearing about my own boring problems from my big boring mouth. But maybe in writing about my experience living with MS I won’t need to talk so much and I can use my verbal blabbing powers for more interesting pursuits (like celebrity gossip and auctioneer imitations). Because on the list of my Personal Disease Anxieties, torturing everyone with endless tales of MS woe is right up there with my fear of spiders and my inability to safely wear flip-flops.
I believe in living with MS. Like, really living. I would love to be the Gwyneth of having MS. I want to learn how to consciously uncouple from MS but also where to find the most bad ass cane and then determine whether simultaneously wearing a bowler hat looks cool or crazy, all while eating locally sourced organic crudités and sleeping in my perfectly feng shue’d bedroom.
You might find this blog glib or trivial and if so, good. MS has A LOT of serious information and bad press out there. We already know this sucks but if we scratch a bit deeper, perhaps we can find a little humour or the teeniest bit of levity in this absurd situation.
Recently I was asked how much I want to be an advocate for this shit show and I groaned. None of us applied for the job. We didn’t go to school for this. Nobody grows up wanting to be the spokesperson for a crappy disease, obvi. So, I won’t pretend to be an advocate, just one story. Because even with what feels like an all consuming disease, life is about more than just one thing.