7.21.2017

The Importance of Pretty: Beauty and MS

Lisa Dryer and Tori Davies-Wompey are on a mission to bring beauty back to women with multiple sclerosis. Not that it went anywhere. It’s just been hiding. 

From the moment of diagnosis, people with MS learn about what they stand to lose. The list of physical symptoms is too long and too depressing to detail here, and anyway, lots has already been written about this.

What the pamphlets and WebMD don’t tell you, is how this disease can erode your self-perception, your self-image. MS can be a straight-up, joy-sucking Dementor, and vain as this might sound to those who’ve never had to think about it, MS can steal your beauty.    

Wait, what? MS can wreck your pretty?

MS takes and takes, and while it can’t actually turn you into a human gargoyle, it can make you think you’re one, and that’s just as bad. Tori Davies-Wompey, one of the women behind #MSbeautiful, says “I think MS steals so much from us. Our jobs, our abilities, our roles as daughters, wives, mothers, whatever it was that you did before that you can't do now”. That’s a heavy list. But why stop there? Maybe you’ve had to give up heels. Maybe you’re covered in injection welts and bruises, maybe steroids have taken over your face. 

Maybe you’ve peed your pants

Any one of these things can make it hard to recognize your inner goddess let alone celebrate her. 

Founder, Lisa Dryer was mid-relapse and struggling with these issues when she knew something had to change. With the help and encouragement of professional photographer and close friend, Al Murin,  #MSbeautiful was born.

Cool hashtag, but what exactly is #MSbeautiful?

#MSbeautiful is an event that brings women together for a no-cost day of pampering and glamour, complete with hair, make-up, and even swag bags. The events are an opportunity for women to support each other, reclaim themselves, and raise self-esteem. Each event culminates in a professional photo-shoot. They've already held successful events in Ohio, Texas, and Wisconsin, with Colorado on deck. Lisa's goal is to be in every state and here's hoping that eventually #MSbeautiful extends past the US border.  

So, Lisa and Tori have MS? Why are they doing this?

Lisa and Tori seem to know that in helping others we help ourselves and when Al Murin passed away unexpectedly last year, Lisa became passionate about continuing the mission they had started together. Tori says her work with #MSbeautiful is rewarding, that it gives her a sense of purpose. Says Lisa, “Looking at happy people makes me happier...But making people happy is even better. Giving people a little bit of fairy tale in their day. Amazing.”

Ok, but like, does lipstick cure MS?

If this superficial need to feel pretty is beneath you, then congratulations, you’re better than me. And if you’re pretty without makeup, well, bless your heart. Go forth and multiply. Personally, I believe more in blow-outs and bronzer than in actual, natural beauty, but Lisa (she really is better than me), believes everyone is inherently beautiful; that the things that make us beautiful extend beyond the surface and include “creativity, talent, smarts…what make you you”. She isn't afraid to go on camera looking undone. She says women need to see that side of it too. It's not about being an idealized version of yourself. It's about how you feel. 

Knowing a bit of glam can’t fix broken self-esteem, let alone cure MS, Lisa’s vision is to provide at least one amazing day, where we can escape a bit. And it’s working. Tori says “feeling pretty…makes me feel just a little bit human again”. Are we seriously gonna deny her her humanity? Get this girl to a MAC counter. 






Wait. Are you saying disability can be beautiful?

One #MSbeautiful participant had this to say “As a woman with Multiple Sclerosis, it is very rare to feel beautiful, or as the center of attention for the way that I look. I am no stranger to getting stared at. Generally, I try to ignore people who look at my walking device, such as my walker or cane.”

Lisa and Tori know this is bullshit. Society has told us a bunch of lies about disability. In a disease where one has little control, claiming one’s beauty is about taking control back. #MSbeautiful is about being empowered to say: 

I’m worth this. I deserve to be here. I deserve to be seen.  

Are Lisa and Tori #changing the world?

Positive examples of disability in media are few and far between. Disability is underrepresented, misrepresented or just plain ignored and women with chronic illnesses like MS are left to conclude that disability, visible or invisible, isn’t part of the conversation, isn’t relevant. Simply put, isn’t beautiful. Lisa and Tori are calling this out and replacing the void with awesome images of real women in all stages of MS.  

When Tori talks about how using a walker, and sometimes wheelchair, messed with her idea of herself, it clicks for me. Tori’s a babe. Tori uses walkers and wheelchairs. Me too. If Tori can be kick-ass, it reminds me that, so can I. 

Seeing her beauty helps me see mine 

and I realize just how powerful this campaign is. When women are empowered, it’s contagious. We need to see ourselves reflected back.

Swag bags and paparazzi? I want in.

These ladies want you to know that disability does not disqualify you from being beautiful. Join the #MSbeautiful Facebook group. Start using the hashtag on your selfies. If you want to participate in an event in your town, look for info on their FB page. 

Hold up. I’m a dude. Can I come too?

No. #MSbeautiful is about women empowering women in a safe space. And while we know you need to feel pretty too, we’re sure you understand. Men are also affected by MS and many have faced similar issues, but this particular project is just for the ladies. So, sorry guys. You’ll have to get your own thing. Might I suggest #MSdudeiful?

Until next time, stay pretty, Trippers.

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7.07.2017

Mad Diary of an MS Relapse. Steroids Made Me Do It.

In an attempt to calm down my MS I’ve been riding a rollercoaster of steroid-induced psychosis these last few days. 

Warning:  This is some Girl, Interrupted, peek into my brain on drugs, shit. You don’t need to call any hotlines. I dipped my toes in crazy for a few days but I’m fine now. Just, read at your own risk.


Dear Diary, Shit's about to get weird. 

Day 1

Get up early, put on a cute hat, get coffee and head to the hospital. There’s a slight chance my incurable disease could see some relief, so today’s a good day. 

Steroids are hard, but this time’s gonna be different. This time, I’m gonna be the perfect patient. I’ll wear pink pyjamas to match my pink, puffy, face and it’ll be adorable. I’ll be like, guys, I’m so sorry if I freak out and try to destroy you when the drugs hit me, but really, I know everything’s gonna be fine and everyone will be like, Wow, she’s got her shit together. Look at how awesome she did. High five!

Day 2

My infusion nurse arrives at my home and asks if anyone else is around that could unhook my IV so she won’t have to come back. I tell her to ask the dog and she looks at me like I’m the unreasonable one. When she does come back she offers to take my vitals and flush my vein “if I want”. 

By midnight, my tummy hurts and my bones ache but I don’t complain because it’s worth it. 

The paltry AF sleep aid I was given barely makes my eyelids heavy, but I decide to embrace it and get shit done. Write the best blog ever, read all the things, learn to speak Russian. It’s like I’m on speed, but with no down-side. 

Day 3 

Look in the mirror and decide my pie-face makes me look younger, because I’m a glass half-full kinda girl. 

So far no benefit from the steroids and that’s making me anxious, but there’s still time. 

It’s my last infusion and my lazy nurse asks me if I’m comfortable taking out my own IV. Again, I refer her to the dog. 

Day 4 (morning)

Infusions are over and I’m not tethered to a pole anymore. I could shower, but I don’t. I mean, I feel okay, but not shower-okay

In fact, I’m a bit dizzy and I realize I’m weaker than I was pre-steroids. Not a good sign. 

Give myself a quick sponge bath and get a ride to the salon for a blow-out so I won’t have to lift my own arms to dry my own hair. I tell myself the worst is over.

Spoiler: No it’s not.

Day 4 (afternoon)

Appreciate the feeling of clean hair for 7 minutes and then crush my blow-out by going directly back to bed for 5 1/2 hours. 

Wake up and feel sad it’s still light out. 

Cancel plans for a rooftop hang with my Ginger Bestie and her BF.

Day 5 (morning)

Wake up and realize I can’t move my right leg. Panic a little.

Text The Banker, who got up hours before me and is in the next room, to come and help. He kisses me good morning (it’s lunchtime) and then patiently bends and straightens my leg until it feels limber enough for me to use it.

Step on the scale and wonder how it’s possible to have gained 6 lbs overnight when all I ate was saltines and half a banana. 

Cancel plans to attend Canada Day BBQ with more besties and my sweet godsons. 

Experience increased feelings of FOMO. 

Day 5 (afternoon) 

Make coffee. Pour it down the drain because prednisone makes everything taste like poison. 

Decide steroids have not helped and that I’m ready for my Make-A-Wish.

Feel too sad to think of any good wishes. 

Scan Spotify for a playlist that will match my mood. Find nothing in the genre of Devastating Illness Ennui. Briefly consider one called All the Feels before deciding that anyone who uses this phrase should die.

Day 6 (morning) 

Accidentally knock over a bag of garbage and decide not to pick it up. Ever.

Decide I hate everything, throw out half my stuff and then wonder what I can buy to make myself feel better.  

Cancel plans to attend a holiday BBQ in the ‘burbs. 

Make a note to stop making plans. 

FOMO's at an all-time high.

Day 6 (evening) 

The Banker is hiding in the storage locker with the dog asking Siri if Werewolf/Vampire rules apply to Solu-medrol Beast People. 

After holding back tears and trying to suppress a full-on meltdown all day, decide that confronting the loss of mobility is actually a pretty reasonable excuse for a meltdown. 

Call my parents and try to get them to meltdown too. Meltdowns for everyone! 

Day 7

Congratulate myself for not being a drug addict or an actual alcoholic because it’s really tempting to not wanna feel any of this. 

Decide extreme sadness is not sustainable and brainstorm ways to pull myself out of this hole. 

Download a meditation app. Don’t open it. 

Decide to feel grateful that my tummy hurts less than it did yesterday, that my coffee no longer tastes like arsenic, and that I still, probably, have friends and a husband, somehow. 

Allow myself to grieve what I’m losing. Know that somehow, I will come to terms with this fucking nightmare. 

Make plans for the weekend and keep going. 


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6.29.2017

MS Relapse - 9 Ways to Survive Steroids

It’s not clear if I’m having a true relapse or if this is just faster progression than I’m used to. I’m in that murky relapsing/borderline/progressive, transition period.  Regardless of what this is or isn’t, my neuro and I decided to throw some steroids at it and see what happens. Roll the dice. You know, like most MS treatments.

I’ve had heaps of experience with IV solu-medrol/prednisone, so I know what to expect. These infusions are always a tough week for me, because I am a delicate fucking flower, so I like to have a plan.



Drugs
I never leave my doctor’s office or MS clinic without a prescription for something like ranitidine (to kick the stomach acid) and something (strong) to help with sleep. I usually ask for horse tranquilizers and get a dirty look, but at least I leave with zopiclone. The side effects of solu-medrol are well known, but some docs wait until you call back the next day because you've been awake for 26 hours, before they offer you an RX. Don’t suffer. You need them and they help, so ask. 

Snacks
Even with ranitidine, my tummy acts up. Some find their appetites increase (especially on an oral dose), I always have a painful tummy so I keep crackers, cheerios, toast, and ginger ale on hand. Homemade bone broth is better than packaged soups because of the sodium, which you wanna avoid because things are about to get real puffy.
Note: If you can't put down the chips because you love salt like I do, just know that your face is going to look like a pie for awhile and accept it. Don't let anyone take your picture and maybe cover all your mirrors.  

Fluids
For the first time ever, I don't mean booze. You have to hydrate like hell with actual H2O because prednisone means water retention. Like, stay out of the rain or you will probably absorb and retain that too. In addition to all the water-weight, this drug is constipating AF so try to get ahead of that. Whatever your bowel routine is, double it. 
Note: I still drink coffee because technically, it's a diuretic and also, I don't want to lose my damn mind. Let's face it, I'm gonna be awake anyway, might as well be pleasant. Bonus: My bladder is normally a wreck but it's always more chill when I'm on the juice, making it easier to pound fluids.

Stuff to read
When I’m wide awake in the middle of the night, it’s tempting to turn on my laptop and write. Or read gossip blogs. Or shop. I’m feeling wired and creative and a little bit sorry for myself, like I at least deserve a new lipstick, maybe some shoes, just for having to go through these things. Resist. Screen time in the middle of an insomnia attack is def going to encourage wakefulness longer than flipping though a magazine or reading a book will. Sleep is essential to healing so it's important to keep the tech turned off. 

Sunscreen
We covered pie-face, but my normal alabaster complexion has a tendency to turn fever-red on this drug, and steroids at this dose can cause photo-sensitivity, meaning easy burns. If you’re a pasty-faced, day-walker like I am, make sure to wear your SPF 60 even if you’re only out for a quick minute. Then again, if you’re also lazy like I am, just don’t go outside. 

More drugs
Don’t skip your regular meds. This isn’t a drug vacation. I know, sometimes I’m just so sick of putting pills in my mouth all day. But it’s important to stick to your routine. Throw in some calcium if you’re not already doing so. Steroids can turn your bones to dust. You still need your bones.  

Namaste
Don’t trust your emotions when you’re on solu-medrol. And maybe warn your friends and family. Everything is more intense, and on top of it, you’re having a relapse. Know it’s the powerful drugs coursing through your system and don’t dwell on it. If you do lose your shit and bring the drama, you have an out. Blame it on the drugs and apologize. You weren’t you.

Hiccups
Oh yeah, hiccups. This is a WTF symptom that sometimes happens on steroids. I don't know how to fix this, but in researching this article I learned that there are actual hiccup support groups for people taking solu-medrol. I mean, if you have MS, hiccups are probably the least of your problems. Then again, when I have hiccups, I make a big fucking deal about it. I will cry real tears and ask why everything bad happens to me. Then I plug my nose and chug a glass of water until I'm sure I'm about to drown. If I survive, I log onto JCrew and buy a dress, because I've just been through hell and I deserve it. 

Netflix
You might feel like cleaning the gutters, rotating your tires, moving a piano, I don’t know what you’re into, but this is artificial energy and you will have to pay it back. Remember your body is healing and you need rest to let it recover. As tempting as it is, try not to do the thing (that is to say, all the things) we all want to do the second we feel that unfamiliar boost of strength or energy. 

Steroids can have impressive effects, especially in early RRMS, they can feel like a freaking miracle. Over time, the results can be less thrilling. Fingers crossed, but remember, they’re not a cure. After 16 years and probable SPMS, I’m chasing that dragon and don’t expect to see loads of improvement but even a tiny one would feel like a win. At least until something better comes along.  

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6.15.2017

6 Annoying Reactions To My 72 Hours In A Wheelchair

The Banker and I have just returned from a fantastic long weekend in NYC. In my day to day life, I use a walker or cane, but long days of traveling call for my convertible walker/transport chair, Optimus Prime. So, for 72 hours I had the concentrated experience of hearing the questionable things people feel compelled to say when they see someone unexpected (young? pretty? cool hat?) out for a push in the park. Here's a sampling of some of the mouth garbage we heard.

    Seriously?


1. "Can she walk a little, or..?"
 
The first questionable comment came at airport security when the dude in charge of scanning our bags decided to speak to The Banker instead of me. I'm not sure why he assumed my ears, mouth, and brain didn't work, but it felt so satisfying to loudly declare, “You can speak directly to me”. He apologized. 

2. "You have to go across the street to the second floor"

We arrived at the Shubert Theater on Broadway, full of excitement to see Bette Midler in Hello, Dolly. Fortunately we got there early, because when I asked about the bathrooms I was told the ‘accessible’ ones were across the street. On the second floor. Of a busy restaurant. It would have been nice to know this ahead of time. Like, when I booked accessible seating for the show. There would be no champagne at intermission. 

3. "Nice seat"

In addition to those who talk to wheelchair users' companions instead of engaging directly, there are those who infantilize and treat you like a little kid; who will touch you and pat you on the head. During my dry intermission, a woman approached me, rubbed my back and told me I had a nice seat. Like I was 5. Was she just trying to be nice? Maybe. I don't care. This is weird. Unless you're my mother, please don't touch me and there, there me. You don't know me. 

4. "Esti intr-un scaun cu rotile"

While rolling down the street, an old Romanian (probably?) woman rushed me saying something along the lines of the above. Technically, I don’t speak Romanian but I'm pretty sure she was saying "You’re very beautiful." Look it up. 

5. "That’s the best way to see New York City."

At the end of a long day, in the elevator at the hotel, a weary woman looked at Optimus longingly and said the above. The Banker was not having it and told her so. She doubled down and continued complaining about her sore feet. The Banker told her not to complain about walking, to someone sitting in a wheelchair. Like, duh. This seems pretty obvi, but you'd be surprised at how many times I've heard some version of this. Lucky for her, we arrived at her floor and she left the elevator in a huff.

6. "This would have been a lot easier if you could stand."

Oh, really? Please, tell me more about how this affects you. This pissy comment came from the crusty TSA employee who's job it was to give me a pat down/deep-cavity search at airport security. She seemed really put out that I couldn't balance without a cane. So, I made a scene. 


Despite this rant, I'm not actually a bitter, old, wheelchair lady, hell-bent on politically correct language. I get it. I'm different and for some reason, people need to point that out. I'm still getting used to this new version of myself, and the reaction it provokes in others can be frustrating. I'm learning to roll with it for the most part, but  I don't think my big, loud mouth is ever gonna let it slide when it's way outta line (TSA lady, I'm talking to you). 

Traveling with MS requires a little extra planning and patience but it's worth it. And, it wasn't all side-eyes and throwing shade. We had many positive experiences. We encountered one NYC traffic officer who was exceptionally friendly and helpful, an excellent ambassador to the city and others who were eager to make sure we had a comfortable and easy time in the city. 

Mad love to The Banker, who is a pro at navigating OP through the city, in and out of cabs, boats and bars and never, not ever, makes me feel like any of this sucks for him. 

New York, I still love you.

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5.01.2017

How to be a hypocrite: MS edition

The morning after a wild night out, I did what any proper party girl would, and sifted through the 4 million photos and selfies I’d taken the night before, deleting any that were blurry, where my hair looked weird, or where my lazy left eye made me look just a little too drunk. I am not a photo-realist. Then, I updated my social media with the most perfect pics of my glam and exciting life, all before brushing my teeth. 

The Banker and I had been to a gala event in the city with about 1900 of Toronto’s coolest and most cultured, art-gallery types. The requested attire was Steampunk, which I nailed, thanks to a crazy hat from my mom’s vintage collection. I knew I looked good and so did everyone else. I got loads of compliments from the beautiful people of the 6ix, of which, for that night, I was one.  

I know this for a fact because I was even paparazzi’d. I was delighted when a media photographer asked if he could shoot me, claiming the hat had caught his eye. This old thing? I immediately obliged, grabbing my cane and striking my sassiest pose after unceremoniously pushing Optimus Prime, my convertible rollator, off to the side and out of sight.

Wait, what?


Under a disco ball and the influence of more than one cucumber martini, for the sake of the photo, I pretended not to know, or need, my rollator. I didn’t think twice about my epic diss to Optimus until the next morning as I reflected back on the evening’s festivities. It went like this: happy memory, happy memory, uh-oh memory. You know, the one that shows up once you’ve sobered up and start scrolling through your mental inventory of the events of the previous night, scanning for shame? Who did you drunk text? Who did you wake up next to? Who did you offend?

Turns out I offended a robot, but that robot has a name and it’s Optimus Prime. We have a complicated relationship and maybe he’s kinda part of me and so maybe I kinda offended myself. 

WTF are you talking about? Are you still drunk?

Maybe.

Last year I wrote this piece in xojane about beauty and disability. I talked about how, as a society, we have trouble accepting that disability can be normal, and even beautiful, because we don’t ever see it represented that way in media and that has a powerful effect on what we collectively believe. Now, a year later, I had an opportunity to be represented in this very context, in a hip publication - to do the very thing I’ve been rallying for - and I totally fucking blew it.

Let’s be real. I’ve been shoving my rollator out of pictures since he arrived on my doorstep, and before that I was ditching my cane for pics that were private, never intended for a magazine or even a blog. In documenting my own life, I’m not trying to re-write history or deny my experience. We all struggle with how we look to the world. Selfies help us influence how we are perceived by others, but what about how we perceive ourselves?  

I don’t like what I imagine others will think when they see an image of me with a mobility aid. If a picture is worth 1000 words, it feels like almost all of them are negative when it comes to looking at disability. I’ve been brainwashed like everybody else into interpreting mobility aids as symbols of my own brokenness. 

But what if they are symbols of perseverance? Of resilience? Can’t I wear that proudly? 

Can’t I just get over myself?   

I want to contribute to the message that disability can be beautiful, I really do - for society’s sake but also for my own. I’d like to be someone who doesn’t have MS, who doesn’t need mobility aids. But I am. I know the best version of myself doesn’t hide this, but handles it with grace. I know this and yet, I can’t promise I won’t do it again. 


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