With a disabling condition, seeking help is part of independence

Asking for assistance is tough for a stubborn guy, but it comes with my MS

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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I must look like I need help all the time. I don’t own a shirt or any other article of clothing that says so, and I don’t think I have a helpless look on my face, either. I smile often, sometimes genuinely and sometimes with my mouth formed in that way that all disabled people know. The point is that I try my best not to wear a scowl or project resignation.

Maybe someone stuck a “Help Me” sign on the back of my wheelchair. It’s not like I know what’s going on behind me, but I don’t think that possibility, or even the chair itself, is it. My chair certainly contributes to making visible (if imperfectly so) the disabilities caused by my multiple sclerosis (MS), but helpful strangers were attracted to me long before I lost the ability to walk.

I probably need to go ahead and make the first of several disclaimers. I’m not ungrateful for help. I know I need it sometimes, but knowing it means acknowledging the reasons behind the need. Sometimes it’s hard to do that with a genuine smile.

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In general, I prefer that a person ask rather than guess about my abilities, and for the most part, people do that. Even if I do look like I need help, that has limitations: I must also look like I’d bite if a stranger touched me without asking, unless they let me smell their hand first, because no one does.

There is, however, a kind of asking that chafes me something fierce. It’s when I’m asked repeatedly if I need someone’s help. That’s like an overly eager waiter who stops by the table entirely too often asking how your meal is. I want to ask, “When I said I was fine, do you think my own assessment of my own condition isn’t accurate? Are you like the kid in Disney Pixar’s “Up,” asking over and over, hoping I’ll change my mind so you can earn your “assisting the disabled” merit badge?”

I don’t want to be your good deed, and as I’m fond of pointing out, I didn’t wake up in a wheelchair today. I know my limitations, and I’m not ashamed to ask for help if I need it.

Do I, though? Do I really know my limitations? My primary progressive multiple sclerosis is the epitome of predictably unpredictable. My limitations aren’t the same from hour to hour, much less day to day. I know me, but with variable MS symptoms, maybe I can’t ever be completely honest about my limitations.

Am I ashamed to ask for help? My pride always reminds me that I spent 20-plus years being a helper, and helpers don’t ask for help. That same pride also tempts me to make people ask multiple times if I need help so I can pretend to “grudgingly” accept. I give in to it more often than I’d like to admit.

My wife, who is my primary caregiver (and yet still, somehow, primarily my wife) reminds me often that as in tune as she is, she’s not a mind reader. Being independent sometimes means needing to use my voice to ask for help. I wonder if there’s an “asking for help” merit badge. I wonder if my stubbornness and pride would let me earn it.

I still refuse to be anyone’s virtue-signaling deed of the day, though.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Kim avatar

Kim

While not confined to a wheelchair (yet) I do use a roll at or & look sufficiently pitiful to elicit many offers of help. After 20 years of relapsing-remitting got downgraded to secondary-progressive. By now I guess I’ve accepted the fact that people do want to help, I look at it as a blessing for me & for them too. That’s just my faith talking, I know everyone doesn’t share that. So, just suck it up & say”yes, thank you!”. Who am I to stop a blessing for someone else?😊

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Denise Alexander avatar

Denise Alexander

I also have secondary progressive, am struggling with movement more and more, and agree with you, Kim and Jeff. I say keep it simple: Choices are "No, thanks, I'm okay," and "Yes, please, how kind of you." What many of us forget is that other people mostly really do want to help. They're not caught up in complex inner dialogues. They want to help, and when they can receive a smile and a thank you, they feel good, and we do, having benefitted from a courtesy by a stranger. If they hesitate it's probably because they're afraid of the disabled person's sensitivities to receiving help. The little boy in Jeff's story just did what came naturally, and for many adults that's still a built-in response. Celebrate the good stuff.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

I know that is meant for Kim, but I think we all got something out of that! Thank you Denise!

Ben

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Kim! I'm getting there. In my case it's definitely pride vs practicality. (Sounds like a Jane Austin novel).

Ben

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Jeff Gullang avatar

Jeff Gullang

Benjamin,

Over my 20 years with MS, I have been all over the place on "accepting others help" when I have not yet asked for help. Do you grumble "thanks?"

Generally I do not like it, but last week I had the best experience with someone offering help without asking.

I parked in the handicap parking in front of a fast casual restaurant. I got out of my car...did the "spasticity jump" for a minute or two, struggled to get up curb with my cane, and a little boy 6 or 7, saw I was having these "problems", stopped having dinner with parents, and opened up the door for me.

His parents did not tell him to open the door. He saw my "normal" struggle and opened the door for me.

Normally frustrated, but that time I was okay with it. I smiled all through out dinner.

Thanks for sharing your story...

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you for sharing that experience Jeff!

Yes, I grumble a "thanks" regularly. I also make attempts at humor or reflexively apologize.

Ben

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Gary Hendricks avatar

Gary Hendricks

I had spent most of my adult life being one to provide service whenever possible (helping someone move, volunteering at service projects, taking youth on outings or trips).

One of the biggest struggles was accepting the fact that I could no longer do most of those things.

I am learning new was of being of service (mailing notes of encouragement or thanks, being a listening ear, staying in contact with others who are also in need or struggling with issues).

People have also reminded me that allowing others to be of service to me is also way of servicing.

This MS is a learning adventure every day.

Just have to continue to remind myself to maintain an eternal prospective.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Gary! Maybe the biggest part of my problem is that prideful "I can do it myself!", attitude. I really liked where you said "allowing others to be of service to me is also way of servicing." I'll have to remember that.

Ben

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