How To Make A Person With MS Feel Useless
How To Make A Person With MS Feel Useless
Last week my well-meaning Uber driver was falling all over himself trying to help me, telling me repeatedly to take my time (like I have any choice), trying to carry my bag, dramatically taking my arm to guide me into the car despite me assuring him I was fine – and, oh yeah – please don’t touch me.
Aw, he sounds sweet. You’re a monster.
I’m not done. As soon as I’d put my bag down, I turned back to close the car door only to find this do-gooder right up in my grill, reaching around to BUCKLE ME IN. Like I was 4.
Wow, you must be pretty frail and helpless. Obviously you were on your way to the emergency room. Or was it a hospice centre? Wait, are you dying?
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| It’s confusing because I use a rollator. You should probably talk louder and slower. |
Maybe this encounter sounds awkward but harmless, nothing more than a nice, if misguided dude trying to help a damsel in distress. But I’m more of a dame than a damsel, and I was hardly in distress. By now, I’m used to heroic displays of assistance and an over-abundance of caution. I tolerate my own discomfort, because what kind of asshole wants to offend someone who’s just trying to help the handicapped?
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| Dame Ardra of the Unfuckwithables (photo cred: Alkan Emin) |
Ardramatic much? How about if nobody ever helped you again? Would that make you happy?
I’m grateful for the kindness of strangers. But this stranger didn’t believe me when I said I didn’t need help. And that’s not cool. What’s worse was that in my mind I’m this strong, independent, gal-about-town; when I saw myself through his eyes, suddenly I was weak, needy, tragic.
You should probably take the bus.
Woah, let’s not get crazy. Besides, it’s not just ride-share drivers who are going out of their way to get some of that good karma. Lately, it feels like the state of my MS has most everyone convinced I can’t do basic things for myself. Sigh. It’s become a fun game for me to drop something in a crowded room, then try to guess who will be the first to leap up and get it. Pick-up Sticks, Disability Edition.
How do you still have friends?
I honestly don’t know. But recently not one, but two members of my inner posse fell to their four collective knees and attempted to tie my shoelace. While they were fighting over which one of them is closer to Jesus, I sat there feeling like a 4 year old. Again.
Okay Snowflake, but isn’t it true that just this week you accidentally turned the stovetop on from leaning on it, melting your Le Creuset salt grinder, almost setting the kitchen on fire? Didn’t you drop your extra-large blueberry smoothie on the not-yet-purple carpet? Word is that after over-extending yourself to the point of exhaustion, you spent 27 minutes on the floor next to your sock drawer, wishing you could call 911, but you couldn’t reach your phone.
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| For the record, the salt grinder thing happened months ago. |
I don’t know who your sources are, but yeah, that sounds about right. It’s true that having MS means sometimes I legit need help. I know this so bad, I feel like most of my sentences start with “Would you mind…”, and every time I utter a “Sorry but, could you…”, I taste bile. Constantly asking for help with basic tasks is a reminder of just how effed things are. “Can you help me take off my pants in a non-sexy way?” is a real thing I have said. As MS attempts to erode my identity as a badass bitch, doing the things I still can, even if it’s hard for you to watch, is what I need to do to preserve my sense of self-worth. I know my people love me and want to support me. Message received. But I can’t stress enough that my love language is presents – expensive ones – not unnecessary medical-grade assistance.
So you want help, and you don’t want help. What the hell?
Imma break it down for you. If you don’t want me to feel useless, just ask if I want help, instead of jumping in and assuming I need it (exceptions include assuming I would like a glass of wine, and assuming I would like another glass of wine). When you do offer to help and I say “No thanks”, bonus points for believing me the first time, even if that means you might have to clean up macerated fruit and flax seeds off the floor. Are you serious? I’m sorry about the smoothie incident. I really am. But the carpet is fine, and to be honest I never loved it anyway. When I’m repeatedly asked, in that squeaky voice full of doubt, “Are you sure you don’t want me to do this basic task that looks impossible for you…?”, the message is that you’re not convinced I can keep myself alive. I see you looking, holding your breath, waiting for me to fail at whatever it is you’re sure I’m going to die trying to do.
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| Back off, Boy Scouts. I got this. (photo cred: Alkan Emin) |
While the intentions of my trying-to-be-woke Uber driver were good, just as the intentions of the people who love me are, there comes a point when it’s also important to keep in mind the impact of our actions. If someone told you you were smelly and stupid every day, you might put on deodorant, maybe pick up a book. When the world repeatedly sends the message that a person is incapable of doing things independently, the risk is that they will start to believe it. The day may come when I can’t buckle my seatbelt or tie my shoe, and I will be hashtag blessed to have good people who are willing to help me, but please let’s not speed up the process. Let me continue to believe whatever delusions I need to about myself, until I’m ready to accept and adjust to a new normal.
Okay. I hear you. But if I can’t make a big show of unnecessarily holding open automatic doors for people with disabilities, how will they know I’m a good person?
One thousand good-person points for asking me to help you from time to time. Don’t assume my suffering, my need, is always greater than yours. I mean, obviously I’m not gonna help you move, or kill a spider, but don’t assume you can’t ask me for something; my skill set is vast. I’m here for you, too. Just ask.
PS As soon as I finished writing this, I went to make a smoothie and this happened. Obviously I have no credibility and you should un-follow this blog immediately.
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| At least it wasn’t blueberry. |
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I had to chuckle Ardra…. Just never make me a smoothy!
Ha! Cracking up! I want to draw a line on your photo… where/why I love you , Ardra!??
Thank you, Ardra. Very well said. Spot on, and gave this MSer a much-needed giggle today too. Win-win! ?
wow this is me explained, well not heated i can relate to this more than you know xx
Another fantastically written piece of work. Love u, girl!
I changed the sheets on the bed ALL BY MYSELF!! And bragged about it to my hubby! Love your take on this MS journey <3
So much shit like this all the time. A couple days ago I was walking up the stairs at my gym. Of course since one leg is stiff like a telephone pole, I'm holding onto the rail and swinging my leg up the steps. Yes there's an elevator, but whatever. If I can, I will. So there's this ass standing up at the top of the steps (someone I don't know at all), yelling "YOU CAN DO IT!! YOU CAN DO IT!!! ITS BEEN A ROUGH DAY!!!" HA HAHA" WTF??? This dude has no idea whatsoever why I'm walking the way I do, no idea that him standing there blatantly staring at me is just going to make it more likely that I trip on the stairs and bust my ass. Good god, people.. mind your own damn business..
I totally relate. Well meaning people don't always get that we have to keep trying or it becomes a case of MS has got me, rather than I've got MS.
I make most of my smoothies for the floor now. Thanks for reading, Bill!
Thanks Mare. I love you too!
Thanks for reading! Glad I could make you laugh.
Glad to know I'm not the only one!
Being old and being disabled is a double whammy. Yeah, I need a lot of help, but please let me try first. However, after seeing me start something and fail or just crash and burn so often, leaving someone else to clean up me and my messes, I understand why my lovely family jumps in help and takes knives away from me. It is just so damned hard to ask for help! But, strangers, beware. I prefer helpful to rude. And why the hell do doors, especially bathroom doors, have to be so heavy? Even after 40 some years of this, I retain delusions about what I can do.
I’m in the same boat my friend. 44 years of MS now ?
Thanks for reading!!!
Making the bed is SO HARD. Props to you, Karen!
Good for you for taking the stairs (and the stares). I've experienced this kind of thing many times. It's super gross. It's treating adults like they are children, or puppies being trained.
Yup. 100 percent.
Good article and we need to maintain our sense of humour. I survived polio at age 3 and now wheelchair dependent but I have always fought for my independence. Worked, married, family, now a grandson but in that 50+ years my biggest "disability" was the attitude of others. My humour kept me going, my activism kept me active. Hang in there
You have a great way of explaining these things so I can educate people in my life (with laughter ??) thank you!! Thank you!!!
It's always good to give a heaping spoonful of sugar to help the medicine go down. Thanks for reading!
Thanks Terry. I have a feeling you've been changing a lot of those attitudes by your example throughout your life.
This is so familiar and funny. My family needs to read this so they understand where I’m coming from when I say to them “at least let me try to do it”. I agree with Terry Weins in that our biggest disability is the attitude of others -mainly my family.
When people offer to help, I suggest they come to my house; I have windows that need cleaned. I explain I need to know I can manage these obstacles or I will have to stay home. Completing them, no matter how slowly, awkwardly, or painfully it looks, keeps me moving. Empower me please; don’t enable me.
Thanks for reading, Darlene. Share widely!
Your last sentence – Amen.
I was diagnosed with PPMS 11 months ago. Like you, I've researched and read everything I could find. When I stumbled across your blog I thought, "this is refreshing." This post helps me understand what is happening around me and gives me direction on what I need to do. Plus, you make me smile. Peace & solidarity.
I came back again. This type of "help" had never happened to me. Until Thursday evening, I went for a meal in a local restaurant and had to put my cane down and try to shift a table so I could get into the seat. The table was on a cast iron stand so it didn't move easily with one hand on my first try plus all the wine glasses wobbly
ed. So a lady at the next table jumped up to offer to help, I think since I had the cane. She was trying to be nice, but I distinctly felt my "hackles" raising with a distinct determination to "do it myself". Oh the joys of MS and use of a cane!
Hi Dale,
I'm so sorry to hear of your dx. PPMS is a particularly unfair form of this already unfair disease.
Thanks so much for reading, and I'm glad you found me.
A.
I am very familiar with the old table shimmy!
This post was a most entertaining way to address the awkwardness of being semi-disabled. But the solution, as you indicate, is simple. Ask me if I need help, and honor my response. Can that be so difficult?
Thanks for reading and commenting, Mitch! Hope you're having a good day.
Right on point with me on this article!! Love reading your articles!! Thanks for writing the things i can’t put into words without pissing someone off!!
I got you. Pissing people off is totally my jam. Thanks for reading!
I can relate to this so much! “I can do it myself”, “cant you see I need help?” My family gets so upset with me when I don’t ask for help and then flame out. Or they offer help and I get all meaney,snappy and then I feel horrible. It’s all about not letting MS control my life. Ardra your stories give me hope and a fresh prospective. Thank you for writing about what’s important to us all and the struggles we face.❤?
Thanks for reading, Vicki. It’s helpful for me too, to know I’m not the only one!
Boy does this hit home! After a recent ‘bad’ fall someone I love said, good she needed a ‘wake-up call’. What the h$$$ does that even mean? Wow! I didn’t know I put her out so much. She’s never around and when she is I wait on her.
Haha. Love this post. I’m doggedly independent and will ask if I need help and appreciate it if strangers ask if I need help. Today, I managed to hobble down by the river and ran out of benches to sit on so just plonked myself down on the riverbank, watchin the river flow. Several folk came up to me and asked if they could help me up – which was nice – and they kindly fucked off when I thanked them and said I was fine. But I totally get what you mean – dropped a cafetiere of coffee on my bedroom carpet cos my left hand grip decided to go walkabout. Told my daughter and she was all ‘ you need help around the house’ and I’m ‘it’s cool. My bedroom smells of coffee now!’. My mate who is in a wheelchair is always having random people come up to him at pedestrian crossings and grabbing his chair and steering him to ‘safety’.
I get this, deeply. ??? Another thing I can’t stand is others utilizing my condition for their personal gain. “Well, he has MS.” Is a quote from a lady friend of mine (who I have since distanced from) she said to our waiter once to get the special treatment SHE wanted due to her alcoholic anxiety and psychoses. I don’t have time for that!
How about an opposite reply to “How to make a person with MS feel useless?” My otherwise helpful and loving husband says more often than I like, “I do everything around here!” I suppose that’s true enough, but geesh, don’t say it like that, I mean to my face! It really does make me feel useless. Now let me go back to sleep.
In the Mall… I won’t jump all over to help you…just what is expected of me…BUT I get to repeatedly call you Honey…because you’re 55 and I’m 22
So I’m up on the roof, checking my Evap cooler. I ask myself WTF are you doing. Unsure of using ladder. I kick my shoes off. Seemed to help! Made it down, no more of that s**t from now on! F MS and all it’s buddies!!
F MS indeed.
OMG, this is all so true! One time, I was visiting my daughter at the hospital after she delivered my granddaughter. I was wheeling myself into the building in a wheelchair, and a nurse held the door for me. I said, “Thank you very much,” and she said, “Good job!” What the hell?! What am I, a puppy??? I was so offended because it was as if she was praising me for being able to push myself rather than relying on someone to do it for me. I can take care of myself! Most of the time…but don’t make me feel like a child when I need help.
As always sooo true! Thanks so much
Another spot on article! Thanks so much for always putting into words what we all have experienced, but I could never express it as well as you do. My favorite part is “One thousand good-person points for asking me to help you from time to time.“ I want to build up my good-person points too!
❤️