Month: July 2018

How To Improve Mobility Aid Stigma With A Hashtag

32 Comments / MS can eff with your identity. / December 10, 2021 /
 
Spoiler: It’s not #blessed
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.
 

 

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.

 

mobility aid stigma

 
 
 
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. 

 

the cool kids

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, 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!

#babeswithmobilityaids

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

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

38 Comments / Fatigue,Symptoms / December 10, 2021 /
 
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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