The Tale of the Concerned Wife and Resistant Husband

“Do you think a cane would be helpful?” my wife asked after watching me narrowly avoid a fall, and not for the first time. I was diagnosed with primary progressive multiple sclerosis three years earlier, and I was only starting down a path that would, fourteen years later, leave me unable to walk, work, or take care of my own daily needs.

I knew the answer to Kim’s question. However, if I responded with a “yes,” she wouldn’t have let the issue rest until I bought a cane, and rightfully so. But I wasn’t ready to wear that scarlet letter in public – to let everyone I might encounter know that I was weak or feeble. My life had been about achievement – physical, academic, professional – and I wanted to remain that guy.

“No, I don’t think a cane would help me. I’m still doing fine,” I said. Was I though? Not at all, but my self-image, which I had worked so hard to cultivate, clouded the truth. 

A couple of days later, as we roamed the shops in downtown Portland, I happened upon a display of hand-carved, hardwood canes. They didn’t look clinical at all. After I confirmed nobody was watching, I pulled one off the shelf and tried it out. I was shocked by how much it improved my walking. And the stick was gorgeous. I might allow myself to be seen with this cane, I thought as I paid the cashier. But still, I used it only inside the house at first.

MY FIRST TIME

I love my city’s Fourth of July fireworks display. I’m not happy unless I’m so close to the action that my neck becomes sore from staring straight up and my breastbone vibrates from the explosions. Because we would have to park a considerable distance from the ideal viewing spot, I broke out the cane in public for the first time. We met up with a work associate of Kim’s, and she didn’t point and laugh at me; she didn’t break into tears of pity; she didn’t even seem to notice the cane. Over the ensuing weeks I brought out the cane more and more, and soon it became my constant companion.

This marked the genesis of my attitude regarding assistive devices: yes, I may have a disability, but I’m not ashamed of it, and look what I can still do. I didn’t adopt this approach overnight, however. The process took years.

Today, I realize that although it was unfortunate I needed a cane, the day I started using one, life got so much better.

THE CANE ISN'T ENOUGH ANYMORE

After another year of disease progression, I visited a physical therapist. She took one look at me walking with a cane and said, “I’ve got something better.” She brought out two forearm crutches. I had seen people using them before, but those folks were more disabled than me. Surely I didn’t need to go there yet.

I grabbed the forearm crutches and walked across the room. The difference was remarkable; I had so much more control. Later that day, I went to a health care supply store and ordered a pair. At first, I used only one of them, because I was still worried about appearances to some extent. But over time I realized the benefits outweighed my concerns, and I used two forearm crutches most of the time.

It was unfortunate that I needed these mobility devices, but the day I started using them, life got so much better.

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NOT THE COOL KIND OF SCOOTER

Although the crutches provided more stability, they couldn’t help me with fatigue issues. As my legs grew weaker, I avoided situations where I might have to walk very far, like sporting events, shopping malls, and leisurely strolls through the city or country. I wanted to try out a scooter – not the cool Vespa style, but the Rascal style, like on the classic Seinfeld episode. However, a scooter represented a quantum leap in how I would be perceived by others. Crutches say, “I’m hurting today, but maybe I’ll get better.” A scooter says, “I’m broken, and I always will be,” or so I thought.

An opportunity presented itself. Kim and I took our kids to Washington, DC for a long weekend, and I found a company who would rent me a scooter. I was comfortable with this trial because nobody would see me other than my immediate family. Within minutes, I fell in love with the scooter. As we made our way around DC, for the first time in years I didn’t slow down the rest of my family. In fact, the miles of walking left them worn out and complaining by the end of the day, while I continued to zip along at full speed.

When I returned home I realized all that I had been missing, and I ordered a scooter. This being my third mobility aid, I transitioned to it more smoothly than I had with either the cane or the crutches.

It was unfortunate that I needed one, but the day I started using a scooter, my life got so much better.

For a while I used the scooter only for long distances, and I continued to use the forearm crutches for short distances. As my disease progressed, I stopped using the crutches altogether. A scooter is a decent part-time solution, but if you ride one all day, then its shortcomings become obvious. The time had come for the ultimate mobility device.

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NO LONGER CONFINED 

Earlier in my disease progression, I agonized over the possibility that I might end up in a wheelchair. But as that day drew closer, I no longer felt that sense of dread. I had fully developed my healthy outlook on assistive devices. Experience had taught me that life would get so much better when I accepted a wheelchair, and it did.

Although the day I adopted each new mobility aid marked a milestone in my disease progression, the days prior were some of my worst, and the days immediately afterward were some of my best. When I resisted, because of fear of embarrassment or a feeling that I was admitting defeat, I missed out on life. When I accepted help, the world opened up for me.

Today I realize that I’m not confined to a wheelchair. I’m enabled by my wheelchair. In fact, you never know where you’ll find me, because I’m going, going, going all the time.


This blog was originally published on MyCounterpane.com

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Mitch

Mitch Sturgeon

Mitch Sturgeon is wheelchair-enabled MS hero living with primary progressive multiple sclerosis. Despite his disability, Mitch lives a full and contented life with the support of his two children, Amy and Zachary, and wife Kim in South Portland, Maine. You can catch up with his adventures on EnjoyingTheRide.com.

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    42 Comments

  • Linda   Jul 22, 2015 9:38 AM
    Thank you for your comments. I am being fitted for a brace this afternoon and had been dreading it. I will look at it as being an opportunity to keep on truckin'.
  • joey   Jul 22, 2015 9:54 AM
    I too have PPMS and use a walker when we go out to eat but for other things like concerts or a visit to the zoo My husband pushes me in a wheel chair. I wish you the best and sounds like you have a great support system - family!
    i live in CA and it gets so hot but I have A/C and turn it on in the early morning and have it going pretty much all day. I pray they find some meds to help us!
  • Gary   Jul 22, 2015 10:00 AM
    Thank you for this inspiring story! Maybe I should finally listen to what my wife has been saying for years and pick up a stylish cane.
  • Lynne   Jul 22, 2015 10:03 AM
    Thanks for sharing your story. I finally used a wheelchair at the airport on a recent trip but am still fighting using a cane. Your story is telling me it is time for the fight to be over. You are an inspiration and I wish you and your family all the best!
  • Jen Z   Jul 22, 2015 10:05 AM
    SPMS.

    Your story is my story.

    Keep on truckin', brother.
  • DH   Jul 22, 2015 10:05 AM
    I was so happy to read your story, because it's like you were telling my story (literally reading my mind!). I wish you the best of luck, and thank you so much for sharing!!!
  • Declan Groeger   Jul 22, 2015 10:30 AM
    I can totally empathise. I fought every step of the way and 26 years after diagnosis (RRMS) I'm still fighting. Your body tells your mind when you are ready for assistive technology.Stay strong
  • Jill Boomer   Jul 22, 2015 10:48 AM
    Your story is exactly what I have been going through for the last year. I have primary progressive MS and I have fought the idea of an electric wheelchair or scooter because I think it felt like failure. I have been in a wheelchair for about three years but said NO to the electric chair. Recently I was working with some therapists at Washington University and they suggested I go with the electric chair instead of my preferred manual one. When I sat in it and saw what it could do and the relief it would give me I said OK. I hope it will be here by Labor Day and I can get back to life. I have had recent surgery to take care of pressure sores and this chair allows me to lay flat, etc. It is a win-win. Sometimes you just have to listen to those who know and realize what I've been missing.
  • Catrina   Jul 22, 2015 11:04 AM
    Thank you so much for sharing your story. I know I am not alone with these feelings. I've met this be such a struggle for me everyday, it's time for me to accept what is and start back living my life. Thank you again
  • Karen   Jul 22, 2015 11:35 AM
    HI!! Loved your story! I have PP MS since 05, was a RN in critical care ICU/CCU but can't do that anymore. Have 3 kids 25,22,18 and a really good husband!!, they help me a lot ! Exercise is all that helps, done 4days out of 7 per week. Can walk but only with a walker/rollator. It's all with my balance, limbs work fine but no balance!no pain(thank God) respond if you can when it's good for you. Love Karen
  • Tina Santiago   Jul 22, 2015 11:38 AM
    Thanks for sharing your story! In a nutshell, this has been my life with MS since I was diagnosed in 2002. I refused each assistive devise for fear of embarrassment, stares and questions by those that didn't know about my disease progression. I thought I would be an embarrassment to our 2 daughters that are now 15 & 17. My family never felt embarrassed, in fact they encouraged me every step of the way! They were just glad I was able to come to all of their extracurricular events, family vacations, etc. I have also been married to my wonderful husband for over 28 years and he has given me such great support through all of this. Yeah, I still get stares and the occasional comment, but I'm living life and enjoying it! My next step is a power chair to save my energy around the house. I'm going to keep on moving and keep on enjoying life!!
  • pennie   Jul 22, 2015 11:44 AM
    Ty I am going ti go get a cane. I too have resisted. Your letter made me feel better. So thank u sincerly
  • Patricia Williams   Jul 22, 2015 12:20 PM
    Your comments really hit home with me. Especially, the walking stick says,I'm hurting today, but maybe I will get better. A scooter says I'm broken and I always will be.
    I hate it when I have my walking stick, which is lovely and colourful and everyone says' oh what's the matter with you ' I didn't know you needed a stick. Isn't it annoying you with the tapping when you walk? They know I have MS. And I want to say I would use the stick everyday if it wasn't for the comments I get. Maybe one day I will be like you. As you said it took time to admit you needed these aids so life would start again.
    Forever hopefull
    Tricia 😃
  • Caro   Jul 22, 2015 12:31 PM
    Thank yoiu Mitch for your inspiring story. I am SPMS and really fought against the cane. I usually wear the back brace every day and use the cane around the neighborhood. I hate to take it with me when we go out, I think everybody is looking at me. I better really get used to taking my cane with me when we go out in public, this is about me, and this is what I have to do.
  • Linda   Jul 22, 2015 12:44 PM
    Great article... expresses my feelings on moving from different
    Aids....next will probably be a scooter and now I look forward
    To it!
  • Anybeth   Jul 22, 2015 2:10 PM
    Diagnosed RRMS at 21. Exacerbation two months later lead to a wheelchair rental, soon a walker purchase, and (after another rental) a wheelchair purchase. The lightweight standard little black-and-chrome manual chair was easier for me to get used to than the walker. But when I first rented the chair, it was that or crawl and, to be frank, standard walkers are hideous. I was 22 and in college. It took me about two weeks to get over my "walkers are for old people!" ageism/ableism. Later got an eye-catching rollator (4-wheel walker w/seat) with a patterned front bar. (It really is eye-catching. Total strangers comment on it with admiration and half a dozen times a year, people ask me about it and where they might get one.) Helped my gait be more natural such that I can usually go for more than a few steps now without having to touch something for balance. And last year, I got two walking sticks to go with my quick-open camping stool w/back, so in winter emergencies or really good days, I can go where wheels can't.

    I absolutely love my devices and the freedom and security they provide. With them, I can get myself around and do what I need to do. Without them, I'd be stuck. Agreed that these do not limit, they do not confine: they liberate.
  • Carla   Jul 22, 2015 2:11 PM
    Thank you for your story. My MS has been in my life since 1993. Over the year I have added items to help me walk and move longer distances. We all are given a deck of cards over our live time. Some days are a hand full of aces, Then there are those days when you get all jokers. We with MS reshuffle the deck and play the game of Life that best works for us. Be well.
  • Frances Meehan   Jul 22, 2015 2:25 PM
    Thank you so much, your story has really helped me. Am always fighting having to use any walking aids & end up feeling fatigued & frustrated. Really want my independence back, think time to get a powered chair or scooter. Thank you again.
  • Mary Ellen Ziliak   Jul 22, 2015 2:28 PM
    Using an assistive device is such a mixed bag of emotions. Thank you Mitch for sharing such wonderful insight to this learning curve.
  • Julie Morris   Jul 22, 2015 3:21 PM
    I know the feeling
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    Quaker  Jul 22, 2015 4:24 PM
    Thanks Mitch----Your story helped me a lot. I pasted it over to the Patients like Me web site. I know a lot of people their will enjoy it. Thanks-----Bill
  • Venus Matthes   Jul 22, 2015 4:29 PM
    Thank you for sharing your story! I also have been diagnosed with MS. I was diagnosed with remitting relapsing MS in 1999. I was 29. In 2010 they said it was secondary progressive MS. I had to use a cane then a walker now I am in a powerchair. We moved from the country in MI to the city in AZ in 2011. I can go many places on my own in my powerchair, I love it! I agree with you that it gave me freedom again. I no longer feel disabled even tho I am in the powerchair!
  • Bob McCallum   Jul 22, 2015 5:26 PM
    Many thanks for writing. My wife fought every assistance aid with a supreme passion, often as it was too late to be of assistance. As her 24-7 caregiver, she so robbed herself of opportunities to more enjoy the life that gets disrupted by physical disability. I am very hopeful that your article will help other independence fighters. I salute your courage!
  • Laura J. Maturo   Jul 23, 2015 12:53 AM
    After reading your blog it stated how I felt by using the cane (throwing it down like a brat) and then the crutches also. I did feel the same way I worked for the past 39 years as a Nurse no longer working. Always on my feet and moving. I've had many flair ups and have just had another flair up and always have a course of I.V .of Sol-Medrol and of course a taper of Prednisone and Valium for my dizziness . All because of stress and the good old heat no free to most people to have M.S. And like you I too used the cane throwing down on the ground and tan went to crutches and my next step we be the wheelchair / scooter . because we have a membership to beautiful out door flower campus that requires a lot of walling and your story a has encourage me to take my neat step of freedom. Good for you!!!! sharing your story will help many more folks to take that leap and enjoy life and the simple pleasures. I'm so pleased to have read your article . God bless and keep up the good work. Hope like you and others will get up and get moving and smile.Thanks so much you are an angel Once more thank you!!!!!!. Peace and light. Laura
  • Laura J. Maturo   Jul 23, 2015 1:07 AM
    Sorry about the type-o errors. Hope you can understand I'm tired. Thanks again. Laura
  • Vicky   Jul 23, 2015 5:27 AM
    Mitch - you are an inspiration!!!! - loved your blog and your courage! Vicky with R&R
  • Mark Boucher   Jul 23, 2015 6:37 AM
    Mitch ,
    I'm with you. 27 years fighting the MonSter and became secondary progressive 10 years ago. Each aid, bright about the same emotions until my wife, Jackie prodded and coached me to try them to great success. As she says we do everything we ever did just differently!
    Good luck , keep going, just start wearing a Yankee hat and we'll be friends forever!
  • rob1999  Jul 23, 2015 9:57 AM
    God bless you and your family. I was hit hard my first year. I went from a hospital bed after being used as a test rat lol. They told me I had MS the one big clue was I went blind in my left eye. So to make things short I went back to work and nine months later I was in a wheelchair and learning how to speak walk ,see from the left eye only part was my right arm.I come along way and now I use my crane or walker and the wheelchair when necessary.I been down and up and down but you have something that much more important your family and they won't give up and I know you won't, you are a great man just by your smile 😊. Good luck and keep hope alive for all of us. Rob1999
  • Joline Sliger   Jul 23, 2015 10:09 AM
    Thanks so much for the story, I too, went through all of the same steps as you did. I faught everything along the way. I am in an power chair now . It is a huge step to have anyone see you being in a chair. I really think we are the only ones that it really bothers ( the ones in the chairs ). I do find it comforting to know that I am not alone with my struggle. Take care and keep up with your progression story. I would love to keep in touch.
    Thanks, Joline
  • LIndaSchroeder   Jul 23, 2015 10:28 AM
    You go Mitch! Thanks for sharing your inspiring story.
  • Doug Wineburner   Jul 23, 2015 1:46 PM
    I was dxd in 2007 with both ms and myasthenia gravis disease. in beginning I could walk with a cane then went to walker with wheels now in a power chair
    the mg disease affected the strength in my legs I can't stand or walk so I stuck in my power chair it gets me around but I outside city so don't get to go anywhere unless dad or someone takes me
    my dad also has a breathing problem now and has to use oxygen all the time so that's another reason I don't get out as I lost my license to drive I also lost my mom back in april of this year so don't have mom so its just brother dad and me at home.
    I have also lived with epilepsy since I was 4 had brain surgery at age 21. then was driving and doing all kinds of things working retail and other things
    then went to work 1 day in 2007 was walking my legs out of no where lost strength made it in store but fell on floor
    I then went to dr he did test and mri and said mri showed I had ms I went to ms dr then after they did their testing they discovered I had myasthenia gravis disease with my ms. so that disease has no cure or nothing for It besides so here I am on disability and stuck in my powerchair can't drive or anything my ms is spms along with the myasthenia gravis disease I can get around stores shop n all but can't do it til I get a ride to where I need to go
  • Tracy   Jul 23, 2015 2:52 PM
    Ever since I was diagnosed with MS I have been frightened of using a wheelchair/scooter, but thanks to you I now see it as enabling rather than disabling. Thank you for writing this article.
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    SmartyPants  Jul 23, 2015 3:45 PM
    What an awe inspiring story, good for you getting what you need to live a full life. I had spent 35 years in service to people with disabilities and when i was forced to retire due to progressive MS, i brought with me the skills at assessing someone for what they needed for mobility aids, and the know how how to navigate the insurance companies in getting my wheelchairs. Your story inspires me. I no long care how i look, never did. but perhaps for a man it is different. I have had people say "If i had to be in a wheelchair I would want to die? really that is so wrong, life is life and it is what we make it, all of us have disability either showing or inside. I am so glad you over came that image problem, isn't life grand? having someone at your side is so wonderful. My mate has made me feel special, he is by my side, to the end. Well after i quit my very stressful job, my progression stopped, lucky me, but i have severe back pain, fatigue, heat sensitive, but the best thing is massage, we went and had a couples massage and now i am hooked.. I so recommend massage, and i swim which really keeps my legs limber. I also ride an incumbent bike twice a day five miles each time, and i feel this is what makes a difference, keeping active. Many people who get into wheelchairs immediately gain weight, which if we get too big, if we do need to get transferred down the road, it will make it more difficult, so i tell people to keep active, i do my bike then a half hour of bed exercises, hand weights, keeping off extra pounds is important, esp if you will one day need to be transferred. Exercise is the one thing that keeps me out of the fog, clears out the cobwebs. Good luck to you.
  • Teresa Eldevik   Jul 23, 2015 6:10 PM
    Thank you so much for this article. My husband is dealing with these issues & questioning his self worth. I read this to him & just pray its the encouragement he needs.
  • Joanna   Jul 23, 2015 6:42 PM
    There are so many who need to read Mitch's story as we all can relate to these big mobility aide debuts! Just like tools in the shed I say, find the right fit and away we go on a new journey using less energy with the help of a new friend to get the job done! Can I please share your story in our support group newsletter Mitch?
  • Avatar
    Enjoying-the-Ride  Jul 23, 2015 8:14 PM
    Thank you so much for your kind words about my blog post. This is a two-way street, though. If I've helped anyone by sharing my experiences, you've returned it tenfold by letting me know that I've made a difference. It warms my heart. Yes, Joanna and everyone else, feel free to share this or any of my blog posts with those you think may benefit. Mitch
  • Suzanne Branch   Jul 23, 2015 8:54 PM
    I too, was resistant to the cane, the Walker, the scooter and now the poewer chair. They help, but are far from easy. The power.chair is too wide and doesn't go through all doorways. It requires an adapted car. Once I get to a frien's house, it doesn't climb stairs. It was billed at$15,000. For that price, I would hope it would be more useful.
    I can't open doors while on it. There is no way to carry bags on it. I thought I would be independent with my wheels. I 'm not.
  • Tracy Pointer   Jul 28, 2015 11:00 PM
    My friend has been laid off her job and now she has no health insurance. She has been dealing with MS since 2007. Can someone please tell us where we get her sponsor to help with her current issues. She cant even afford medication and her eye sight is getting bad. We have set up a gofund.me. Please can some one HELP....
  • Susie   Jul 29, 2015 9:06 AM
    Thank you for sharing your story! I am fortunate to have only mild and very stable RR MS, but even so, I was left with some permanent incoordination and loss of feeling in my hands and arms--enough for me to say there was no point in playing my Celtic harp, so I gave it up. Then I met a woman in a power wheelchair whom I immediately knew had MS. What I didn't know, and was surprised to find out, was that she also played a small harp. I thought: How can I say 'no,' when she says 'yes?' She has made a sea change in my life. Because of her, I now play the harp again. We both volunteer with our harps at the local children's hospital family inn (a gig she got for me). She is a tower of strength whose ability to work around her many challenges is an ongoing source of inspiration.
  • Sandy   Jul 30, 2015 12:07 AM
    Thanks for this Mitch. You remind us that freedom to move can be achieved in many ways.
  • Darlene Dodd   Sep 10, 2015 3:05 PM
    I'm sorry I just read this I to have Primary Progress M.S. You lose a lot with this disease but you fight as mush as you can & you never give in. You put things in writing better then I could. Thank you for sharing & good luck to you & your family
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