a woman in a wheelchair in a few different scenes including having lunch with a friend and getting marries

I’m Not Broken Because I Use a Wheelchair

I opened my email and read the headline, “Out of the Wheelchair and Onto a Bicycle: Dr. Terry Wahls‘ Story.”

I looked at Dan and rolled my eyes.

Not that Dr. Wahls doesn’t have an incredible story. She truly is a champion who inspires us and has a phenomenal story to share.

It was the headline that got me upset.

Regarded as damaged

With a headline like that, I, as a person with multiple sclerosis who has to use a wheelchair, am instantly regarded as someone who is damaged and must be fixed. Someone to feel sorry for or who could improve her health if she only tried a little harder.

Because certainly I can’t be happy, fulfilled and productive if I have to live my life in a wheelchair. It’s as though being able to walk is a prerequisite for having a good life.

Yes, I would love to walk. Yes, I miss the days when I could stroll through the parks. Climb a flight of stairs. Stand all by myself to get into bed or go to the bathroom.

But my aggressive disease quickly progressed, and I haven’t been able to walk in nearly 16 years. This is who I am as a person.

I’m not broken

I’m not broken.

And for as much as those of us in the MS community are eager for others to understand what we’re going through, Dan and I are hoping for the same from people living with our disease.

We often hear people with MS say to us things like, “I’m afraid I’m going to end up in a wheelchair,” and I’m sitting right there.

Maybe they’re doing what I want them to do: See me and not my wheelchair. Or, maybe their fears supersede their sensitivity to present company.

Making the most of my life as it is

Either way, I get it. I felt the same way when I was diagnosed more than 20 years ago.

But now that this is my reality, I feel I need to verbally stand up for myself and others who need to use a wheelchair.

I, like so many others, am making the most of my life as it is.

And don’t get me wrong. I’m not complacent, and I haven’t given up hope that someday researchers will find a cure for this disease.

I still take a disease-modifying therapy and am dieting and exercising to keep my legs strong and body limber. But let’s be honest. Many of these self-care activities are things that people who don’t have MS also do.

I’m not putting my life on hold

Would things be easier if I didn’t have to use a wheelchair? Sure, but I’m not putting my life on hold because I need to use one.

You see what I did there? I USE a wheelchair, I’m not CONFINED to it.

My wheelchair is the key to my independence. It helps me experience life. I can do things like go to the grocery store. Gather with friends for dinner at an accessible restaurant. Meet a cute man and get married. Travel throughout the United States. Attend classes as a non-traditional graduate student and earn my master’s degree (BTW: I was non-traditional because of my age and not my disability).

Perhaps my fears 20 years ago about “ending up in a wheelchair” were rooted more in the fear of the unknown.

I hope that I’m helping to show that life doesn’t necessarily end if your disease progresses and you need to use one. In some ways, both literally and figuratively, my life didn’t really start rolling until after I started using a wheelchair.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (32)
  • Carol
    7 months ago

    I really enjoyed reading that article. It really made me think. I know our use of walkers and rollators and other forms of assistance are important to us because it allows us to get out and also we are able to do all the things that we want to do

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Thanks, Carol. We’re glad we made you think and appreciate your assistive device. Amazing how these pieces of equipment allow us to continue enjoying life and doing what we do 🙂

  • Julie
    7 months ago

    I’m always happy when I read others struggles and triumphs with this disease. It’s what I tell others when they resist assistance (can, scooter, wheelchair). Why would you turn down something that can enhance your life?

    I really didn’t want to use a cane when I was first diagnosed. I worried people would stare. Then I realized they would stare harder if I lost balance and ended up face first on the ground.

    I really didn’t want to use the scooter that was bought for me, then I realized I was missing out on going on my day of shopping with my daughter that I enjoyed so much. Walking long distances had become difficult.

    There are so many things that we deny ourselves that would actually help us. We just need to embrace a new mindset. Thanks for your story.

    Best of health to all.
    Julie

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Thank you for your positive perspectives and outlook, Julie! We love the question, “Why would you turn down something that can enhance your life?” Amen, sister! While it can be a difficult decision to make, assistive devices can make life so much better. Cheers to you!!

  • happymess
    7 months ago

    Jennifer, I’ve known you both for 18 years and you are still an inspiration. Go Girl. Sue G

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Thanks, Sue! For as much as I inspire you, you inspire me even more!! None of us wanted to be part of this MS community, and for as lousy as it is, it gave us the opportunity to make great friends like you.

  • rolly
    7 months ago

    Thanks for this article, which pretty much sums up my own thoughts as well!

    I’ve been in a wheelchair full time for about six years, and it’s just part of my life.

    I also don’t like if people refer to me as being ‘confined’ to a wheelchair. Sure, I 100% depend on it to get around, as I can no longer rely on my legs. But it gives me the freedom to move around, which I wouldn’t have without it.

    ‘Ending up in a wheelchair’ is often seen as the worst fear for someone diagnosed with MS. But believe me, I’m being faced with problems that are much harder to deal with than being in a wheelchair. Mostly those invisible symptoms.

    I must admit, it took me a lot of courage to actually start using one, which, in retrospect, seems stupid. But I think it’s the perceptions of people that made it difficult for me. I didn’t want to be seen as someone ‘disabled enough to need a wheelchair’. Ironically, I was actually a lot more ‘disabled’ while using all my energy to walk with great difficulty. Yes, I was walking (well, sort of!), but I couldn’t really go anywhere or do much, because the attempt to walk left me so exhausted. Then, when I got myself a sporty wheelchair, I felt like having a new lease on life, as it gave me so much freedom back!

    Granted, as my MS progressed, my days in a lightweight active wheelchair were limited, as soon enough I had to move on to a motorized wheelchair. And although initially I had the same concerns again (I didn’t want to ‘feel more disabled’ or be seen as being more disabled, after a while I accepted is something that made it much easier for me to get around and do the things I wanted.

    Today, it’s just part of me. I’m still me. It’s just that I happen to use a wheelchair to get around. Sadly, many people cannot see beyond the chair, and I hope that those perceptions will change at some point.

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Thanks for sharing, Rolly. Your story sounds quite similar to mine. I totally can relate to a lot of your feelings and experiences. And I believe and hope those perceptions are changing a little more every day. Best to you!

  • sevensix
    7 months ago

    Very soon after dx I began using a cane. Initially it helped. Fatigue set in mandating colorful arm crutches that I hated with a passion becoming self conscious that people were staring at me as I ambled along half-walking. I could not wait for a wheelchair although doc hesitated at first I got my first chair, and E&J chrome tank. Medicare liked my tank, I did not. Fast forward to receipt of my Quickie light weight folding chair that was wonderful, more in the realm of “real” wheel chairs providing comfort and reassurance. Identity problem solved.
    Fought with Medicare again for replacement chair this time a TiLite titanium non-folding (yes, it fits in the trunk, one of our important criteria).
    Shoulders failed shy of rotator cuff injury that justified a power chair. Thank you VA! Of course, an accessible van followed. Mighty pricey if you ask me.
    Except for a few broken strings I am fit as a fiddle but restricted to my chair. I like this chair very much that put me back on the top shelf of life. Powered by 24 volts I am formidable, confident, boldly moving along. If I can just find a way to get the cars out of the van accessible parking spaces
    I will appreciate that courtesy a blessing.
    -sevensix

  • Dan and Jennifer Digmann moderator author
    7 months ago

    So glad to hear you’re moving along as well as you are. I also had a tank (that seriously is what Dan and I named it!) that I disliked as well. You are right, our chairs put us back on the top shelf of life. Keep living as awesome as you are!

  • lpoole
    7 months ago

    I really enjoyed the article. I too found myself in the same situation. I use a rollator at home and a manual chair when I go out. What really gets me is an employer that does not know you personally seems not to want to take the chance on what you know and can do, they just see the wheelchair. It is very discouraging.

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Thanks for sharing your thought and experiences. And we totally hear what you’re saying! Dan kind of feels the same way about what employers see. Not that he’s using a wheelchair, but he is so public about his MS, it’s hard to keep it a secret as he’s applying for jobs (https://multiplesclerosis.net/living-with-ms/undeniably-disabled-work/). We wish you the best as you move forward! Take care, Dan and Jennifer Digmann @multiplesclerosis-net team

  • Jan
    7 months ago

    Okay, sorry to inform, but in my opinion as a part-time copywriter, I myself see no issues with the headline itself: to me, simply factual.

    However, at Year 13 with MS and worsening issues (I use a rollator always, even in the house; a cane with much struggle only to get me into a store with a Mart Cart; and I have a wheelchair but avoid it for the reasons you had mentioned, coupled with my former athletic me, plus it is a burden to load in/out of the car), I also think the body copy of what you wrote is spot-on. Truly.

    I’ve read Terry Wahls’ book, she works at my alma mater, and I’m a week into more strict eating (wow, I made it a whole week without dark chocolate, wine, grains: 3 more weeks to go to try some things), and frankly I have much stress but never DMDs (not everyone’s way).

    And I’ve come to the conclusion that I am likely my own worst enemy with the wheelchair thing. I know differently (jogging, pro figure skater), and my heart, head, and will know differently. But my body won’t cooperate. People around me are typically really nice about it (too nice at times). I’m the one who is having issues with it.

    I refer to Texas Gov. Greg Abbott: I understand he used to jog, but then a tree limb fell on him, leaving him paralyzed and permanently in a wheelchair. He has done a lot, and I doubt that people treat him differently because of the wheelchair. Yet, here I am often struggling with my steely determination to press on.

    I could still skate into Year 3, but slowly things have changed. Cannot say I’m grateful for MS but am grateful for what I’ve learned along this crazy path. And, as Adam Grant (Wharton Prof. and on LinkedIn) mentioned, a gratitude journal isn’t enough (I don’t do that–don’t need one more thing to do, yet I do think about such items), it needs to be combined with some type of contribution, be it large or small. I myself liked that.

    And I liked your post, the guts of it, as I think you mention much about feelings many have–many I have had to deal with.

    Nice.

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Thanks, Jan.
    We appreciate your comments and reading your story. You have a great spirit and we wish you all the best with the Wahls Protocol! And we also are grateful for what we’ve learned along this crazy path and for the people, like you!, it’s connected us to.

  • Ptaylor98
    7 months ago

    A wheelchair is a tool. It helps us live a more active life despite MS. Nobody should avoid a wheelchair who can use one!

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Much like glasses are tools to help us see better, right? But then again, are people always open to the reality when they realize they need to wear glasses? We understand the fears associated with being at the point when you need to use a wheelchair, but it truly opens the doors to so many opportunities.

  • sylviaa
    7 months ago

    Thank you for your article, it was exactly what i needed to read. I to am in a wheelchair/power scooter and felt you giving me encouragement on dealing with it when I read it.

  • Dan and Jennifer Digmann moderator author
    7 months ago

    So glad the article made you feel that way. We all need encouragement dealing with this disease. And just like that, your words encouraged us as well! Thanks for connecting with us 🙂

  • emsmark
    7 months ago

    Jennifer,
    Beautifully written. You and I are in the same place with MS. I use a wheelchair and live my life with what I can do. Sure, there are things I cannot do but, as you nicely stated, I do what makes me happy. I am a photographer and I am constantly aware of how my view of the world has changed from this perspective. Thank you.
    Mark

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Thanks, Mark! The view of the world from a wheelchair is a pretty interesting one. We bet you can take some pretty interesting photos from that perspective. Best of luck capturing the scenes and moments!

  • JenJo
    7 months ago

    This was a great article, at the right time for me! I am expecting delivery of a power chair any day now. It’s taken me 6 months to accept that I really do need what the medical people advised. Thanks for sharing your experience, and I look forward to getting out, back into the world again!

  • Dan and Jennifer Digmann moderator author
    7 months ago

    So happy for you! We can’t wait to hear about your new-found freedom. Our advice: It will take some getting used to, so be patient as you get used to your power chair. And remember to drive slowly … your walls will thank you!

  • RaniPaints
    7 months ago

    Very well-said.

    When people ask or say am i wheelchair-bound, I say No, I much prefer being “wheelchair-enabled.” The wheelchair is a gift, a mobility aid, a tool. It doesn’t trap us – it gives us mobility!

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Speak the truth! Very well said yourself. “Wheelchair-enabled.” You mind if we use that one? Of course, we WILL cite our source 😉

  • Nobu
    7 months ago

    Our mobilty aides make us part of everyday life. The more we accept and use our tools, and otherwise function like they are just part of our bodies, I think the easier it is for people to accept and move past what they see. I know it can be annoying, and I had my own challenges accepting using aides, but it is a great deal easier with them and then just get on with life. I entirely understand these feelings and issues. Somtimes I get a little cranky when patroized, and think things like – “do you want me to take your contacts out of your eyes and lick them” ? But I am like to say something like – think of my crutches as shoes – I don’t mess with yours, don’t mess with mine.

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Amen! Awareness that our mobility aides make us part of everyday life should make them less scary. This is why we’re so glad you are helping to continue this discussion! Here’s to hoping the more people talk about them and show their benefits, there will be less stigma surrounding mobility devices.

  • Artie
    7 months ago

    Great article! I have been permanently in a wheelchair since 2004.I have a very active life and like you I exercise, eat healthfully and maintain a good bodyweight. Don’t get me wrong, these are difficult choices sometimes and I have to make a commitment on a daily basis. I find that a wheelchair has opened up my life – it has allowed me to be an active independent participant. Sure, there are lots of frustrations and many places that are not accessible. There are additional health problems like pressure sores and possible respiratory issues because of sitting all day to name a couple but there are active things one can do to prevent or minimize these issues. I also miss the joys and accessibility that walking made possible etc but to spend too much time spent dwelling on the loss would make me miss out enjoying the life that is. I lost friends who were scared of the wheelchair and my progressive MS but I have also gained many new wheelchair-mobile friends – these people are my daily heroes.I do have one major pet peeve – it is when people come up and literally pet me!

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Yes, Artie, that kind of petting is a downside to living in a wheelchair. That, and when people talk louder and slower because they think you’re hard of hearing (like THIS is why you need to use a wheelchair!). Stay strong and stay as active as you can!

  • 1LisaCPA
    7 months ago

    I was also one of the people who upon Dx, feared “being in a wheelchair.” What I’ve learned is that any type of visible disability automatically paints you as “other” by the average person. I use a walker/rollator & have had to do so for 5 years. But I have also learned to adapt and since stopping work & going on disability, I have time to do things that I never could before (namely, therapeutic horseback riding!). Thanks for a great article!

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Thanks for your comments! Isn’t it funny how life works out like that? Sounds like you haven’t stopped because of your diagnosis, and we’d love to hear more about your therapeutic horseback riding!

  • JimmyMac
    7 months ago

    Great article with some really important things to consider. I think everyone with MS would give MS away but, since you can’t, you best figure out how life has changed and adapt. I think the best part of life and what gets me so excited when I wake up each day is the knowledge I have no clue what’s going to happen but I do know I survived a MS diagnosis so is anything else really going to be that shaking? Once I realized this fact, using a wheelchair kind of became a no brainer. Really good article!

  • Dan and Jennifer Digmann moderator author
    7 months ago

    Thanks for the compliments, JimmyMac! You’ve got a great attitude. You sound a lot like an incredible member of the self-help group we lead who often says this about MS, “You can’t eat it. You can’t buy it. You can’t give it away. So you best deal with it!” We love how you’re dealing with the disease when you say, “I do know I survived a MS diagnosis so is anything else really going to be that shaking?” #Truth

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