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
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.
Sometimes I wish I could effectively communicate how much I need what you write when you write it. You are so much younger, cooler, thinner and more fun than me – make no mistake about it – but you speak my thoughts sometimes so well that it feel like you're in my freaky head with me. I'm contemplating all of this myself right now – so harsh that I haven't even been able to honestly write about it. I'm still so angry about it. It would be ugly. But thanks once again for making me hope that some day I can be as good at this as you are. Even on your bad days! I hope we get to meet someday…I can be your older, less cool friend with various incarnations of my own mobility aids. I'm up to three, four is on the way – and there might be a fifth not too far in the future (motorized chair? yeh, I said it). I'm struggling hard with this. You help. Thanks for that. 🙂
An "amazing pain relief" seller told me my wheelie walker was making me feel sad and depressed! It took me until later that night to wrap my head around her comment and think "Oh Hell No!" I can diss my wheelie walker and call her an unco-operative bitch when we are negotiating stairs. But NO ONE else disses my wheelie walker.
I never thought I would be one of those people who wants to meet their internet friends in person. Frick, I never thought I would be one of those people who has internet friends. But here we are, and I very much look forward to sharing a few bottles of wine with you IRL some day.
Now, decide you are a queen and fuck all these other put-downs.
Thank you for this! My vanity at times is what keeps me going. When I’m sitting in my scooter I can’t control much but, I can control how I look. It makes my day better if my lipstick is on and I’m rocking a good outfit and shoes. Kat
This is so awesome! Think about the word disability. If you look up what 'dis' means, it is 'a latin prefix meaning apart, asunder, away, utterly or having a private, negative or reversing force…' So, saying someone with MS is DISabled, is really not correct. Maybe it should be DIFFERENTLY abled? I know, that sounds totally like I'm super touchy feely and that is cheesy, but I can't think of anything else. In fact, I think that you are truly DISABLED when you are, maybe, 6 feet under? Maybe in a coma? My brain is pretty on point. In fact, everything is pretty on point except that my legs don't seem to want to play with the rest of my body all of the time. I might be exaggerating the 'everything is pretty on point' a little. The biggest hurdle that I am finding is to find canes that don't look like they are exclusive to the grandma set. Not dogging grandmas, just want to look as awesome as I can with a cane! Your thoughts….
Love, love, love these paragraphs of inspiration. My head knows you are so right, my heart, even though it cries "say it ain't so", kinda knows it, too. I will print this one and keep it close by next time I'm having one of my epic meltdowns. Thanks, you are one amazing lady.
Wow, fantastic read Ardra and those pictures are stunning. I have relapsing remitting MS but after a bad relapse a year in I needed a wheelchair and cane for about 18 months and struggled with people's stares. I found that, as one lady mentions above, I could control how I looked and so I started to love putting my makeup on and wearing my favourite clothes. I bought a sparkly stick and people from all walks of life would stop me to compliment it. I remember being shocked that it wasn't just my disability they saw. Your #babeswithmobilityaids hashtag is a brilliant idea and something we all need to start sharing x
All of this. The D-word gets caught in my throat; I have a hard time saying it or identifying with it. It sounds so broken. Thinking of it as 'having' a disability as opposed to 'being' disabled is a detail that helps me stomach it a bit more.
Love this post Ardra, like the rest of em. Didn’t know there was a disability image problem, I still surf walls and furniture and hopefully, if not cured soon, will for a while. I am a fortunate soul, I don’t experience much of the BS that I hear other’s with disability do. Either that or I have my head in the sand. This post makes me think, which is what I love about MS bloggers, they give me shit to think about. Love the pics by the way, you look great.
Nice blog. You're a good writer. People also sometimes think I'm drunk or look at me weird. I have Ataxia. It can be trying. Their looks I mean, but I try to ignore it.
I wonder if this is something that's harder for women? Though I recently ran into an old friend, who is in his 70's and doesn't have MS but has needed a wheelchair for the past year or so. He confessed to not leaving the house much because he doesn't want to be seen 'like that'. So maybe it's just harder for us narcissists.
Wow! This was great! I think we obsess how others see us – when it's really how we see ourselves. In my pre-MS days, I never looked down on anyone. Now I know there are those who do, that can't bother to slow down and must pass by you – cutting you off to let you know they can't stand your slowness. But for the most part, most are just unaware. And they can't help it… so were we. What I love about you (Ms. Tripping) is that you are so skilled and charismatic that you bring it all out in such a charming way. You aren't all "I have MS, but MS doesn't have me-ish" Because somedays MS DOES have us, and we must fight and claw that bad beast back in the corner. And Beth, you don't sound like an uncool person. Sometimes we just feel sooo alone, and Ms. Trippin makes us feel what ee are…. human. ❤️
You remind me a little of myself. It's been a difficult adjustment at each step. Walking sticks, shower stool… So I gave them funky names so they felt more 'friendly'. Walking sticks are collapsible so they're ninja sticks. Found some fantastic forearm crutches (by Ergobaum if anyone is interested) and they're now King Kong Krutches. Rollator is Tony (he can get you most places) and manual wheelchair is Benny (when I need to go longer distances). I'm in the final stages of selection of a power chair and I think that'll be Viggo. Going with an option with large, rubber rear wheels to get me outdoors and on some trails/camping, etc so I think that name is quite suitable. 🙂 I LOVE the #babeswithmobilityaides tag and I LOVE your attitude! Keep rockin it sista!
I am vain as well, about odd things like mobility, strength, and shoes. My main physical issue aside from fatigue is legs – mostly right leg being uncooperative.
I had to switch to boots – more like hiker or riding boots for stability. (love my Ariat Terrains!) No more heels. This is a bit a subject for me since I have long feet (US 11 -12) and finding great shoes has always been a mission for me. So thankful that my mom had long feet too, and growing up in Seattle, Nordstrom was always the place to go for excellent footwear and range of styles and sizes.
I finally gave into carrying and using a walking stick or cane on a regular basis when I spent about an hour getting to my car at a hospital by walking a few steps and resting for 10 minutes at a time. By now it was after regular hours for the valet parking I had used so no one to bring my car to me. It was actually a restful drive home since I already had hand controls in my car. A kindly nurse even got my car from the garage floor several levels down by stairs. If I could walk as before would have been about a 5-minute effort.
And as my legs became worse, first I used my hiking poles, the graduated to cane or canes, and now use crutches. My mobility vanity is that I can no longer go on a nice walk in the early morning, or a hike, or cross country ski.
Still considered RR since my cognition is very good and except for my legs, most things have been stable for more than 10 of the last 20 years of MS. Still loving my Arbin QuickStep crutches that are no longer being made. I hope they continue to hold up for a long time.
Thanks for reading and for sharing about your journey, Nancy.
I’m glad you’ve found some boots and sticks that you love. I had a pair of Frye’s that I loved, but they became too heavy with my drop foot. That said, I will never give up trying to source the cutest flats out there. I still miss heels, but it seems like flats are getting better and better every year.
I hope your health is stable for a very long time!
When I read your blog #babeswithmobilityaids it made me smile ? I too wobble around like a drunken sailor, not quite ready to give in to using a cane or (eeekkk) a rollater thingy….. I will come to terms with having MS in my own time & way, but reading your articles seems to be making it much easier… Thanks for that!
I am relatively new to mobility aids. I was diagnosed with Primary Progressive MS in 2018. Since that time I have gone from using a cane to a power chair. I use the aids to fit the situation and my comfort, physically and mentally. I am in my 70s and have to accept that I now have an exaggerated normal. After all, I had planned to slow down anyway!
My advice is to be proud of who and what you are. You are what matters.
Good grief…can I relate! I struggle daily with wondering whose body this is that I’m in and where the heck is mine? I progressed very quickly from cane to rollator to power chair…currently have a bath lift being installed! How exactly do you make that sound cool! Bath lift today….pole dancing tomorrow! Oh well…reading your posts ALWAYS makes me feel better…cool?…not so much, but I’m getting there!
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As always, thought provoking & inspiring.
Sometimes I wish I could effectively communicate how much I need what you write when you write it. You are so much younger, cooler, thinner and more fun than me – make no mistake about it – but you speak my thoughts sometimes so well that it feel like you're in my freaky head with me. I'm contemplating all of this myself right now – so harsh that I haven't even been able to honestly write about it. I'm still so angry about it. It would be ugly. But thanks once again for making me hope that some day I can be as good at this as you are. Even on your bad days! I hope we get to meet someday…I can be your older, less cool friend with various incarnations of my own mobility aids. I'm up to three, four is on the way – and there might be a fifth not too far in the future (motorized chair? yeh, I said it). I'm struggling hard with this. You help. Thanks for that. 🙂
I love your blog. If I ever want to try to explain to someone what MS is like, I'll just have them subscribe. You seriously have a way with words.
#babeswithmobilityaides
An "amazing pain relief" seller told me my wheelie walker was making me feel sad and depressed!
It took me until later that night to wrap my head around her comment and think "Oh Hell No!"
I can diss my wheelie walker and call her an unco-operative bitch when we are negotiating stairs. But NO ONE else disses my wheelie walker.
You wear your mobility aids like fashion accessories. It looks good on you.
Thanks for reading!
Beth,
I never thought I would be one of those people who wants to meet their internet friends in person. Frick, I never thought I would be one of those people who has internet friends. But here we are, and I very much look forward to sharing a few bottles of wine with you IRL some day.
Now, decide you are a queen and fuck all these other put-downs.
thank you!
I love this so bad.
thanks Joe
Thank you for this! My vanity at times is what keeps me going. When I’m sitting in my scooter I can’t control much but, I can control how I look. It makes my day better if my lipstick is on and I’m rocking a good outfit and shoes. Kat
This is so awesome! Think about the word disability. If you look up what 'dis' means, it is 'a latin prefix meaning apart, asunder, away, utterly or having a private, negative or reversing force…' So, saying someone with MS is DISabled, is really not correct. Maybe it should be DIFFERENTLY abled? I know, that sounds totally like I'm super touchy feely and that is cheesy, but I can't think of anything else. In fact, I think that you are truly DISABLED when you are, maybe, 6 feet under? Maybe in a coma? My brain is pretty on point. In fact, everything is pretty on point except that my legs don't seem to want to play with the rest of my body all of the time. I might be exaggerating the 'everything is pretty on point' a little. The biggest hurdle that I am finding is to find canes that don't look like they are exclusive to the grandma set. Not dogging grandmas, just want to look as awesome as I can with a cane! Your thoughts….
Love, love, love these paragraphs of inspiration. My head knows you are so right, my heart, even though it cries "say it ain't so", kinda knows it, too. I will print this one and keep it close by next time I'm having one of my epic meltdowns. Thanks, you are one amazing lady.
Wow, fantastic read Ardra and those pictures are stunning. I have relapsing remitting MS but after a bad relapse a year in I needed a wheelchair and cane for about 18 months and struggled with people's stares. I found that, as one lady mentions above, I could control how I looked and so I started to love putting my makeup on and wearing my favourite clothes. I bought a sparkly stick and people from all walks of life would stop me to compliment it. I remember being shocked that it wasn't just my disability they saw. Your #babeswithmobilityaids hashtag is a brilliant idea and something we all need to start sharing x
Thanks Diane. I think I'll keep everyone's kind words and comments handy for my own next epic meltdown.
All of this. The D-word gets caught in my throat; I have a hard time saying it or identifying with it. It sounds so broken. Thinking of it as 'having' a disability as opposed to 'being' disabled is a detail that helps me stomach it a bit more.
The power of lipstick. Amen.
Love it. My mom used to say "If you can't hide it, decorate it".
Love this post Ardra, like the rest of em. Didn’t know there was a disability image problem, I still surf walls and furniture and hopefully, if not cured soon, will for a while. I am a fortunate soul, I don’t experience much of the BS that I hear other’s with disability do. Either that or I have my head in the sand. This post makes me think, which is what I love about MS bloggers, they give me shit to think about. Love the pics by the way, you look great.
JE
Nice blog. You're a good writer. People also sometimes think I'm drunk or look at me weird. I have Ataxia. It can be trying. Their looks I mean, but I try to ignore it.
Thanks Mark.
I usually ignore those looks too, but lately I've been looking back. Like, I see you looking.
Hi JE,
Thanks for your comments.
I wonder if this is something that's harder for women? Though I recently ran into an old friend, who is in his 70's and doesn't have MS but has needed a wheelchair for the past year or so. He confessed to not leaving the house much because he doesn't want to be seen 'like that'. So maybe it's just harder for us narcissists.
Keep surfin'!
Wow! This was great! I think we obsess how others see us – when it's really how we see ourselves. In my pre-MS days, I never looked down on anyone. Now I know there are those who do, that can't bother to slow down and must pass by you – cutting you off to let you know they can't stand your slowness. But for the most part, most are just unaware. And they can't help it… so were we. What I love about you (Ms. Tripping) is that you are so skilled and charismatic that you bring it all out in such a charming
way. You aren't all "I have MS, but MS doesn't have me-ish" Because somedays MS DOES have us, and we must fight and claw that bad beast back in the corner. And Beth, you don't sound like an uncool person. Sometimes we just feel sooo alone, and Ms. Trippin makes us feel what ee are…. human. ❤️
Gosh, Debbie, thank you for this most lovely note. I am humbled (and that's hard to do).
You remind me a little of myself. It's been a difficult adjustment at each step. Walking sticks, shower stool… So I gave them funky names so they felt more 'friendly'. Walking sticks are collapsible so they're ninja sticks. Found some fantastic forearm crutches (by Ergobaum if anyone is interested) and they're now King Kong Krutches. Rollator is Tony (he can get you most places) and manual wheelchair is Benny (when I need to go longer distances). I'm in the final stages of selection of a power chair and I think that'll be Viggo. Going with an option with large, rubber rear wheels to get me outdoors and on some trails/camping, etc so I think that name is quite suitable. 🙂 I LOVE the #babeswithmobilityaides tag and I LOVE your attitude! Keep rockin it sista!
Sounds like you have a posse of helpers! Thanks for reading and for being a mutual #babewithamobilityaid
I am vain as well, about odd things like mobility, strength, and shoes. My main physical issue aside from fatigue is legs – mostly right leg being uncooperative.
I had to switch to boots – more like hiker or riding boots for stability. (love my Ariat Terrains!) No more heels. This is a bit a subject for me since I have long feet (US 11 -12) and finding great shoes has always been a mission for me. So thankful that my mom had long feet too, and growing up in Seattle, Nordstrom was always the place to go for excellent footwear and range of styles and sizes.
I finally gave into carrying and using a walking stick or cane on a regular basis when I spent about an hour getting to my car at a hospital by walking a few steps and resting for 10 minutes at a time. By now it was after regular hours for the valet parking I had used so no one to bring my car to me. It was actually a restful drive home since I already had hand controls in my car. A kindly nurse even got my car from the garage floor several levels down by stairs. If I could walk as before would have been about a 5-minute effort.
And as my legs became worse, first I used my hiking poles, the graduated to cane or canes, and now use crutches. My mobility vanity is that I can no longer go on a nice walk in the early morning, or a hike, or cross country ski.
Still considered RR since my cognition is very good and except for my legs, most things have been stable for more than 10 of the last 20 years of MS. Still loving my Arbin QuickStep crutches that are no longer being made. I hope they continue to hold up for a long time.
Thanks for reading and for sharing about your journey, Nancy.
I’m glad you’ve found some boots and sticks that you love. I had a pair of Frye’s that I loved, but they became too heavy with my drop foot. That said, I will never give up trying to source the cutest flats out there. I still miss heels, but it seems like flats are getting better and better every year.
I hope your health is stable for a very long time!
A.
When I read your blog #babeswithmobilityaids it made me smile ? I too wobble around like a drunken sailor, not quite ready to give in to using a cane or (eeekkk) a rollater thingy….. I will come to terms with having MS in my own time & way, but reading your articles seems to be making it much easier… Thanks for that!
As long as you’re not falling! Take all the independent steps you can!
I am relatively new to mobility aids. I was diagnosed with Primary Progressive MS in 2018. Since that time I have gone from using a cane to a power chair. I use the aids to fit the situation and my comfort, physically and mentally. I am in my 70s and have to accept that I now have an exaggerated normal. After all, I had planned to slow down anyway!
My advice is to be proud of who and what you are. You are what matters.
Wise words. Thanks for sharing.
Good grief…can I relate! I struggle daily with wondering whose body this is that I’m in and where the heck is mine? I progressed very quickly from cane to rollator to power chair…currently have a bath lift being installed! How exactly do you make that sound cool! Bath lift today….pole dancing tomorrow! Oh well…reading your posts ALWAYS makes me feel better…cool?…not so much, but I’m getting there!