7.24.2018

How To Improve Disability's Image Problem With A Simple Hashtag


photos by Alkin Emin


My mobility aid epiphany didn’t happen overnight; there was no aha moment when I was suddenly okay with multiple sclerosis taking over my body and my ability to walk independently. The transition from relapsing remitting MS (RRMS) to secondary progressive (SPMS), was hard. Is hard. Even now, having reached some degree of acceptance, there are days when I have no chill about how badly I don't wanna be someone who needs a mobility aid.


Accepting mobility aids into my life and baptizing them with cool names was only half the battle. Turns out there’s a whole world of stigma associated with walkers, wheelchairs and canes that I’d never considered back in the days before I’d needed them. It's a stigma that's warped most of us into unconsciously associating mobility aids with some pretty demeaning words. Words like: 


weakness, less-than, burden, victim, other.

I'm not gonna name names, but someone recently told me it was a blessing that their relative hadn’t survived a heart attack because he would have needed a wheelchair, and this guy would never have been able to handle that. 


Seriously.   







Though I eventually realized that using mobility aids didn’t mean I was accepting some kind of personal failure, I still couldn’t get past what needing them said about me. I didn’t want people to see me “like that”. I shoved my devices out of photos. I decided I’d never use a cane in our apartment, believing I was somehow tricking The Banker into thinking I remained relatively healthy. I was convinced that looking fall-down drunk was still sexier than looking disabled.

Yeah, I'm that vain.

But The Banker is no idiot. I looked drunk and disabled, and probably a little stupid. After my fair share of freak-outs, there came a point when I knew I needed to get my shit together and wrap my mind around my new identity. 


Feeling un-empowered and less-than is so not my jam. 

It was during this self-indulgent existential crisis that I found myself walking in my 'hood, cane in hand, when I came across a guy about my age. He was wearing a fedora, and somehow didn’t seem like a douchebag. Like me, he was using a cane. I noticed his drop-foot and I know he noticed mine. We gave each other a knowing smirk as we headed in opposite directions. 

I found myself thinking about Fedora for days afterward. Thinking, that guy seemed cool. He looked like someone I could be friends with. And then it struck me. Like, duh. If that guy looks cool with a mobility aid, maybe I look cool too. I realized that the key to accepting my new look (the mobility aid version of myself) was in seeing the people who look like me; in seeing the people who look better than me. 

If I had seen her, would I have been so scared to start using a cane?

It was with this in mind, that a few weeks ago I spent the day playing dress up with photographer extraordinaire Alkan Emin and his team. I’m tired of waiting to see myself represented. I’m tired of society getting it wrong. I’m tired of fighting my own fucked-up associations with mobility aids, and I’m tired of hearing others like me say these fucked-up things about themselves.

Mobility aids are tools, like eye glasses. Only nobody ever tells you to 'just try harder' when you need glasses.


And THEN, just last night, I was heading into the Radiohead concert, Titus Andromedon (my sassy new rollator) in tow, when I was rushed by a young guy who just had to know where my slick set of wheels had come from. He explained that his wife Lisa has MS and that "she's so embarrassed".


Oh, hell no.

Lisa's husband could see that I was one of the cool kids, and God bless him for how much he wanted his wife to feel like a babe while using her own mobility aid. My head was exploding, but I didn't have time to tell this guy how much I get it, because Thom Yorke was waiting for me. So instead, I said, "Let me give you my card", and Lisa's husband was like, "Uh, what? You have an I have MS card?"


Suddenly I was no longer cool. 


Just kidding, guys. Look at me!

Despite what my Instagram might lead you to believe, I still battle these feelings of not fitting-in. There are no fashion magazines, glossy ads, or style icons providing examples of how to rock this look, let alone how to make this look okay. And that is why my social media is littered with shameless selfies declaring #babeswithmobilityaids. Every day, I make the choice to not only believe in this bad-ass version of myself, but to declare it to the world, and to champion others like me to believe in the best versions of themselves. I use #babeswithmobilityaids because I realize that if I want to see those people who look like me, those people who look better than me, I have to put myself out there too.

a thousand empowered words

We need to change the story about disability, for ourselves and for each other. Disability representation is coming, but we can’t wait for media to catch up. Yeah, disability has an image problem, but social media gives us the platform to use gossip for our own good. We can be the biggest PR firm in the world, rebranding mobility aids so that when we see those who use them, we don't see stigma, but strength, 


resilience, independence, perseverance, ownership, pride, ability. 

I want to see all the #babeswithmobilityaids. I want to see Lisa out there living her life and seeing herself the way her husband sees her. 

I want to see you. And I want you to see me. 








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7.12.2018

Feeling MS'y: Trapped In A Bad Multiple Sclerosis Day

Get me the hell out of here.

I feel MS’y; which is to say, I feel lousy, useless, beat. Like I’ve been mother-fucking voodooed. Of course, I have multiple sclerosis and it affects many parts of my life every damn day; but, that doesn't mean I feel MS’y every day. Feeling MS’y is when you just can’t. It’s the worst of the worst of what fatigue can do to you, and it just shuts you down. Feeling MS'y is what stops you in your already slow, drunk-walking tracks.

I knew this was gonna be a rough day when I woke up at 4:13 am to pee. Not because I don’t always wake up at 4:13 to pee (and at 1:35 for that matter). No. I knew it was gonna be a rough day when, even after lying down for 5 straight hours, I twisted out of bed at 4:13 to find my legs weak, stiff, and straight-up refusing to point in the same direction at the same time. 

I sighed knowing this was bad news; 4:13 is normally when my stems are their strongest; chilled out from doing nothing all night, with enough pre-bedtime Baclofen still in my system to keep them from seizing up. 

Seizing legs is 8:00 am’s problem. 

At 4:13 I can usually make it to the bathroom sans Blanche (my classy new walking stick). But not last night. 

I lurched my way to the ensuite, like the graceful goddess I am, and realized it wasn’t just my legs that were uncooperative. My whole body was feeling the kind of tired, that is way beyond tired. I was suffering full on MS fatigue. That underwhelming bullshit word that is all we have to sum up what it feels like to have been visited by a pack of Dementors. Surely the Germans must have a better term than “fatigue” for this soul-sucking vibe; but since I'm too wiped to even google what that word might be, I'll just stick to what I've been using for years, and that is to simply say 

I feel MS'y. 

Now I’m trying to go about my day, fighting with myself back and forth about the decision to go or not to go to my 2:30 massage appointment. On the one hand, I only need to rally for a few steps to and from the car. Then again, there’s the physical energy it will take to haul myself onto that skinny massage table, or the emotional energy it will take to have the therapist haul my weak heavy legs up for me. And let's not forget the effort it takes to get undressed and dressed again, and all of this suddenly feels impossible. Sounds pathetic, I know, but 


putting on pants has become a once-a-day on a good day deal. 

The struggle is real. 

Figuring out how best to look after myself when it affects others is always overwhelming, and I can’t even hear myself think right now because I’m breathing through my right ear, which is another thing that creeps up when I’m exhausted, and please tell me someone else with MS experiences this annoying af phenomenon, because my docs just shrug their shoulders like I’m making it up. Obviously if they don’t understand it, it must not be real.

So it’s an MS’y day. Which means listen to my body, but not my emotions. 

My body says stop, but my emotions say freak the fuck out, you’re never getting better. 

My body says clear your sched, but my emotions say you’re gonna let everyone down and if you cancel your massage they’re for sure gonna kick you out of the clinic.

My body says have a nap, but my emotions say have a cocktail, it’ll take the edge off, it’s summer, and you deserve it. 

My body says good point, but who’s gonna make that cocktail? The Banker’s not home for another three hours and you’re too messed-up to walk to the kitchen. 

You’ve won this round, Body.

This is Day 3 of this most recent MS slump, caused by who knows what. Did I over do it on the weekend? Yes. But only by old lady standards. Like, I went to the Farmer’s Market on Saturday. It’s not like I picked my own fruit, nor is Farmer’s Market a code name for a rave. On Sunday, I sat on my bum at a stadium for four hours while the Yankees kicked the home team’s ass. And I only drank water. 

Even if these tiny attempts to live like a normal have a price to pay, it seems excessive that I should still be footing that bill three days later. And despite all this hard living and partying, I’ve been going to bed early, saying my prayers, and eating clean. It’s just that sometimes, MS doesn’t give a fuck. Or, I dunno, maybe Jesus doesn’t like how much I say the F-word. 

So I give in, lay down, and ride it out. I’ve been here before. In the end, I bailed on my basically free massage and laid down quietly in my room for two hours while someone else cleaned my apartment. 

I still haven’t learned to meditate, but I have learned a thing or two about tempering my hysteria when things feel dire. Just because I felt like this today, and yesterday, and the day before yesterday, doesn’t mean I will feel like this tomorrow. This is MS.








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6.24.2018

How To Recover When MS Steals Your Purpose


Hint: Find a new purpose


The last audition I ever went on was four years ago, and I sucked. I sucked so bad. I'd taken the subway to this cattle call and exited from the wrong platform, which meant loads of extra steps to get to where I was going. In the heat of August. In heels. Once upon a time, I was a singer.  

Though I’d been living with multiple sclerosis for several years, this final attempt to get a gig took place during the last of my pre-mobility aid days — that blurry time when I mostly looked fine, but one step too many and I'd turn into a wobbly, hot mess. 

No alcohol necessary. 

MS must have turned me into a slow learner too, because I was always shocked and never prepared for these debilitating bouts of weakness and instability. As a non-driving, transit-taking city-girl, I’d regularly find myself out and about, suddenly slow and barely able to carry myself. Cars would honk as I dragged my heavy, disobedient body across the street, wondering how nobody could see how desperately I needed to sit. More than once, I'd called The Banker to come get me with the car when I was crashed out on a sidewalk, defeated and humiliated, 100 impossible steps from home. 

So it was that I’d arrived at this audition, stunned again by how fast those extra steps had fucked up my legs, and completely closeted about what was going on with me. 

In the singing world, multiple sclerosis was my sick little secret. 

Somehow I managed to get through the audition. Somehow the panel managed to refrain from asking "So, do you need an ambulance, or like, are you just drunk?". The thing we all had in common was the thought, “What the fuck are you doing here? Is this a joke? I thought you were a singer.”

At the time, I didn’t know that that last audition would be my last audition; but as I process things now, it stands out as the turning point from which that part of my identity officially started to die. More likely the dying had started long before, but like any proper break-up, it’s impossible to pinpoint the exact moment when things start to go to shit.


Doors don't always slam shut. Sometimes they close so softly, it isn't until long after that you realize they're dead-bolted behind you.

It’s been a full year since I last sang in public. Since I last sang at all. Singing stopped bringing me joy when it got to be too much to get through a coaching. After working so hard for so long, my heartache was real when, breathless and weary, I realized I could no longer stand and sing at the same time, and the sound I was producing was thin and tired. What had once been a tonic had turned into a toxin. And not the good kind, like opium or botox; more like some sketchy mushroom that a forest troll talks you into.

What a tragic story, right? The thing is, I don’t really dwell on this; it's not in my nature. My opera singer dreams had been modified, tempered by the reality of MS, years before this last failed foray. I’d accepted long ago that I was never going to have a ‘real’ singing career, and was content to study my craft and do the odd professional, mostly choral, gig. 

Because MS can make you settle. 

One minute you’re resentful, raging against what's being taken from you; and the next, you’re consumed with gratitude to cling to any version of what was being threatened. It didn’t take me long to feel less like I was settling and more like I was lucky to do this amazing thing at all. 

I had a world-class teacher who had invested in me like I was a star, though he knew I never would be. I was so happy to just be in the studio, it didn’t really matter if I never performed (though actually I did have a handful of stage-door days). I was only in competition with myself, in pursuit of my own personal best. Singing was a kind of therapy for me. Probably because singing is a lot like screaming, but with less swearing.

Looking back, I can see that as music was being quietly ushered out of my life, writing was nudging its way to centre stage. This happened organically, without conscious intent; without my even noticing. Writing was something I never could have predicted would be just as rewarding as singing, and in some ways more so. Where I always struggled to figure out what was unique about my voice in a sea of sopranos, as a writer, I do know my voice. I know exactly what I want to say. Mostly it's the F-word, and we've already clarified that you can't really say that in a recital. 

I definitely heard this as "She who has a wine to live for." I hear what I want.

I still think about singing from time to time. Every now and then I’ll hear a song or see a pic from my not-too-distant past (thanks, Facebook memories) and take a second to wonder about all that has changed; to wonder at how many versions of ourselves we get to experience in one lifetime. I think what I actually need, what any of us needs to keep going, is purpose. And right now, that purpose is writing. So, thanks for reading, Trippers.

Oh, and just in case you wanna creep a version of the old me, here's a peak at a song I recorded in another life. It's a love letter to The Banker. It's about, well...you'll figure it out.



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6.04.2018

How To Be Weird With A Newly Diagnosed Loved One

My next edition of Ask Me Anything About MS, deals with what happens when a diagnosis of multiple sclerosis is received. Spoiler: Everyone wigs out and things get awkward.

Audrey Larkins asks: 
Hi, Ardra. I just stumbled onto you. I'd love to know what you would say to someone newly diagnosed in their early 20s like me, like yourself. What is the most important piece of knowledge you would choose to pass to them?

And nooyool2018 asks: 
Knowing what you know now, what would you say to a younger you when you were diagnosed with MS?

Answer:

So, my answer doesn’t totally match these questions and that’s because I already wrote this post about how I used my white-witch time-turner skills to travel back to my own dx and give myself the best advice ever, which you should totally read. But first.

Since it’s not just the newly diagnosed who need a little insight into this especially fucked-up time, but also everyone around them, I’m offering up some tips you can passively aggressively post to your social media in the hope that your most blundering friends and fam will be like, Shit, Am I being weird? I better read this, stat


It can be hard to act normal in an abnormal situation. Lucky for you, I'm here to help.


Disclaimer: This is the part where I remind you that I'm just a blogger with a big mouth. My own love language is mostly gin and sarcasm. This is what I needed, but everyone is different. 


How to be weird:
Ghosting because you don't want to see your loved one ‘that way’. Or maybe you’re worried you’ll say the wrong thing. Maybe you just hate being around sick people or hospitals. 

Why this is weird: 
You assume the sick want their space, to be left alone to process their scary new reality. That’s me giving you the benefit of the doubt. But, if you’re just ick’d out around illness, it’s time to get over yourself. It’s okay to not know what to say; even saying the wrong thing is better than saying nothing. Text. Call. Show up. Otherwise, it can feel like you can’t handle it, or worse, you don’t care. 


How to be weird:
Saying things like: “You’re gonna beat this; you’re a fighter.”, “You’ll never end up in a wheelchair." 

Why this is weird: 
People don’t get pulverized by MS because they didn’t try hard enough. Hope is great, but you’re not a fortune teller, or maybe you are, but that’s not a thing, so you should probably stop pretending you can predict the future. If shit goes down and MS does its worst, these kinds of remarks can lead to guilt and self-blame on the part of the patient. And you didn’t want that. You only wanted to make me feel better.


How to be weird: 
Comparing this to your sister’s co-worker’s aunt who has MS and is like, totally fine.

Why this is weird: 
You don’t actually know Aunt Franny, or that she’s totally fine. Multiple Sclerosis can sometimes be what’s considered an invisible illness. MS is vastly different in every person; no two cases are alike.


How to be weird: 
Comparing this to your mom’s neighbour’s niece, who had MS but is like, totally dead. 

Why this is weird: 
You’d think this would be obvi, but these are dumbed-down times, people. There’s no need for you to remind me about Annette.


How to be weird: 
Planning a secret girl's weekend to NYC and not inviting me because you don’t think I can keep up. 

Why this is weird: 
Yeah, I heard about that.  


How to be weird: 
Taking my picture at the hospital, mom.

Why this is weird: 
For the love of vodka don’t post anything to social media. It’s not your news to tell. 


How to be weird:
Referencing kale in any way.

Why this is weird: 
I can’t.  


How to be weird: 
Telling me everything happens for a reason, God’s plan or whatevs.

Why this is weird
If that’s your belief system, cool, but don’t assume it’s mine, or that I’ll feel better knowing you think that some higher power has it in for me. Ask Jesus what I did to deserve this on your own time. You don’t get to decide this is a blessing in disguise. 


How to be weird
Asking, "What can I do?"

Why this is weird: 
Just do it, Nike. Figure it out. Wash the dishes, walk the dog, get the groceries. When going through the trauma of a new diagnosis, even simple decisions like red or white, can feel like choice overload. (Hint: it's summer so, rosé.)


How to be weird: 
Saying things like "This is just a minor setback, a bump in the road." Or, "Turn your wounds into wisdom."

Why this is weird: 
Don’t give me any of this Oprah bullshit. Everybody that ever lived already knows that bread is awesome, and nobody needs these useless platitudes. Let the newly dx’d indulge in their drama for 15 minutes. We have the rest of our lives to act strong and reassure everyone around us that we’re actually okay. 


How to be weird: 
Qualifying your own problems with "But that’s nothing compared to what you’re going through".

Why this is weird: 
Yeah, your bad credit or that time you had impetigo is nothing compared to my incurable brain disease, but constantly saying so is like saying ‘things are tough for me right now, but thank God I’m not you’. Don’t do it. Everyone has their shit. And impetigo is gross. 


How to be weird:
Downplaying the good things that are happening in your life.

Why this is weird:
Just like shielding me from your problems, not sharing the good things that are happening because you’re worried about my fragile psyche, robs me of my role in our friendship. Most of this advice boils down to just be normal. You can’t solve MS, but you can help me remember that I’m still the same me by being the same you. Keep feeding me gossip and Miss Vickie’s chips, and know that I can handle more than one thought at a time.


How to be weird:
Pretending you’re not just as upset or afraid as I am.

Why this is weird:
I'll always remember the time, months after D-day, riding in the car with my girl-boss bestie, Lisa, when we both broke down and ugly cried over what I was going through. After weeks of feeling like I was in an alternate universe, where I was the only one aware of the freaking apocalypse, I felt validated to be reminded that people who loved me were also impacted. You might assume it's obvious, how much you must hate this too, but I didn't feel protected by those who kept those feelings from me; I felt more alone.


A new diagnosis is a scary af time. I remember feeling most supported by presence and presents. So, remember to show up, but like, bring stuff. Because if ever there is a time to be wrapped up in a cozy blanket of love, it's during the trauma of diagnosis. If that blanket is made of cashmere and you get to keep it, even better.  








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5.14.2018

Sorry. Dating Me Doesn't Make You A Good Person




The morning after date night with The Banker, I woke up and sifted through my memories of the previous evening, stopping to ruminate on the worst one. As one does. In fact it was a good night; a great night even, and I’m pissed at myself for giving attention to the only negative part of it, but here we are. And you didn't click this bait to hear about the charcuterie and the champagne, anyway. You're here because you wanna hear about how some a-hole othered me

Thanks to MS, my walking looks ugly. I'm not in the habit of mean-girling myself, and I'm grateful to be walking at all, but if I'm being real, my walking isn't cute. It’s bent and twisted, unsteady and insecure. It has more than once been referred to as Frankensteinian. Adding insult to injury, it happens in sloth-like slow-motion. Even when I’m rushing, I can’t help but move slowly. So impossibly slowly. Wherever I go, my stride draws stares of fascination and concern; stares that I swear I can physically feel. I know how uncomfortable it makes people to watch me walk, and yet, nobody seems to look away. 

In these moments, I, who am normally so self-possessed, so confident and cool, feel reduced; self-conscious and self-loathing of my un-co-operative body. My poor, wayward body, that's just trying to do its job, and doesn't need any extra attitude from me. I feel desperate to remove myself from these situations as quickly as possible, but quick just isn’t possible. And so I want to scream Don’t look at me! But instead, I smile weakly and I apologize.

For being in the way. For taking up space. For being inconvenient. 

Last night as we were leaving our favourite French bistro that is far too cramped to comfortably accommodate a rollator, I made my way through a maze of tables, dodging busy waiters, with a cane on my left and The Banker on my right, while muttering "excuse me", and "I’m sorry" on repeat. I tried to tell myself I wasn't making a scene; that it really is self-indulgent of me to think everyone in the room was absorbed in my struggle to get to the front door, when a diner two tables away, in a tone that could only be considered admiration, called out to The Banker “You’re a good man”. 

Oh, really?

Quick. Somebody get him a medal.

What’s the bfd? The Banker is a good man, maybe even the best man. But that rando doesn’t know that. And his comment stung. All he knows is that a man who looks like he almost certainly works at a bank, had dinner with a beautiful, if slightly busted, woman. This douchebag diner, who looked at me, but wouldn't look me in the eye, was so impressed by our togetherness, he felt compelled to publicly compliment it. Well, part of it. The implication being that there is something extraordinary about someone like The Banker being with someone like me; the lucky girl this virtuous man took pity on. What in the fucking fuck. 

I know this is bullshit. I know it shouldn’t matter what other people think. I even know I'm over-reacting. Normally, this is the part where I say something wise and uplifting, or at the very least hopeful, but this time I got nothing. I guess I’m still getting used to my disease walking into a room before I do. 






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