Wheelie True Stories

To Walk or Not To Walk

I have a friend that knew someone in a wheelchair, but he learned to walk again.

I’ve heard that there are rehab places that can help someone who is paralyzed walk.

It just takes a lot of determination, but I’m sure he can do it.

I’ll pray for him to walk again.

Did you see that guy on Facebook with the robotic legs?!

We get questions, statements and well wishes of all kinds from all types of people; people we know well and strangers that we have just met. We’ve gone over the “You’re such a great person!” statements from people who have just found out that we are with someone in a wheelchair, and the “Does IT still work??” from people who are naturally curious. Now that you know us a little, we think it’s time that we tackle the “He’ll walk again!” comments.11536499_10155769582955515_8324710055354607156_o

Before going any further, let us remind you one more time that we are only speaking from our personal experience and our own situations. These are our personal opinions and we are in no way speaking for anyone else, nor are we trying to discourage anyone from doing what they want.

SAM SAYS…

My husband is a T4 incomplete paraplegic and although that means he has sensation (not feeling) below his injury level, it also means he has no muscle control or movement from about mid chest down. Translation:

Shawn does not and can not walk.

And this may come as a shock to some people, but he has not tried. He has not spent thousands of dollars, hundreds of hours, and an immeasurable amount of energy or effort on rehab and therapy in an attempt to walk again. And I am so, so grateful.

I think that some people need something to hold on to after a major life changing event like a spinal cord injury. They need something to believe in, to keep them motivated, to keep them from becoming depressed or stuck; they need something to keep them moving forward. And I think for a lot of people, that “thing” is the idea of walking again. There is absolutely nothing wrong with that. But I also believe that there comes a time where you have to accept the situation for what it is and adapt; learn to live your life to it’s fullest exactly the way it is. Which is what Shawn has done. Instead of spending the time and money on rehab and therapy, he has spent it traveling with family and friends. Instead of putting time and effort into trying to move his legs, he put it into meeting peers and mastering wheelchair skills, like transferring into a lifted F350 truck without a lift or being able to go up and down an escalator. Instead of working out muscles that he can’t control in a gym every day, he works out the muscles he can control by playing sports and handcycling. And you know what? There is absolutely nothing wrong with that either.

Ask anyone in a chair what the worst part is, and I guarantee you that 90% of them won’t say “not being able to walk”; in the grand scheme of things, that is the least of their worries. So why do people feel the need to tell me “He’ll walk again someday,” or “I’ll pray for him,”? I mean, pray all you want, I won’t say no, but I’m not really understanding the point. Because a friend of a friend of yours was in a chair but is now walking so you’re sure Shawn could too if he really wanted?fotor_145704982075684

Do you think that our life is somehow incomplete because he can’t walk?

Let me assure you that it isn’t. I love him and his wheelchair (even though I constantly have sore toes) and the fact that he doesn’t walk does not define or limit our lives. I love that my husband spends his time with me instead of a physical therapist, that we can talk about things other than his rehab and that his biggest concern in life isn’t learning to walk again. Because the truth of the matter is that not everyone who has a spinal cord injury can walk again. Period. It doesn’t matter how hard they try, it doesn’t matter if they go to the best rehab facility and pay top dollar, and it doesn’t matter if you pray for them. I know we have said this time and time again, but every injury is so, SO different. What works for one person may not work for another. And although I’ve also already said this, there is absolutely nothing wrong with that.

So, if you are someone, or know someone who is trying to walk again, all the power to you. I sincerely wish you and them the very best. But please, don’t feel like their success needs to be my husbands as well, because trust me, he is plenty successful from his wheelchair.

CHELSEA SAYS…

Spinal cord injury research has come a long, long way in the last few years making a cure much closer to possible. There are new treatments, new trials and new types of therapy. There are also rehab centres out there that are doing amazing things for people with spinal12647055_10156459125640503_1580847976770871522_n cord injuries and we are in no way trying to belittle any of it or those who choose that path. No matter your goals, big or small, just remember that time is precious. Try not to live in the past or the future; the present moment is all we have, whether you can walk or not. Work hard but also be happy with who you are right now, at this very moment because tomorrow may never come. All we have is today. You are breathing, you are alive, you are conscious and with that you can thrive. We sincerely hope that one day there is a fix for an SCI, but until that day comes, we are going to love our men and the lives we have with them exactly the way they are.

 

Pushing on…

Sam & Chelsea

41 Comments

  • Selena Solima

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  • kate willette

    Thanks so much for this article. I’d already been married to my husband for 15 years when he broke his neck in 2001, and you reminded me of the weird juxtaposition of moments in my days back then. The well-meaning friends who clearly thought that walking was everything, followed by strangers offering to pray that he be “completely healed”, followed by doctors and nurses and PTs who were working to keep him from getting pressure sores or trying to help him with respiratory troubles or teaching him how to wrangle a toothbrush.

    It was head-spinning. As it turned out, my husband was one of those guys who got just enough return of function to safely get around with a leg brace and crutches, if the terrain wasn’t hilly and the distance wasn’t long. This isn’t really what everybody was hoping for, right? Like me, they wanted him back the way he was just before he fell.

    That’s what’s so weird & hard to explain. He is already exactly who he was before he fell. He’s ornery when hungry. He’s independent as a porcupine. He laughs at stupid puns & loves to eat salmon. He’s our kids’ dad and my husband and his father’s son. Yes, there are exhausting & annoying bits of his life (and therefore mine) that suck each and every day, and I would give a lot to take away just one of them. Neuropathic pain is high on that list.

    I did want to say that it’s possible to enjoy your married life and fully accept that this stupid injury is probably permanent while at the same time working in some small way to get to therapies that work. Not that get people walking, but that get people some small return of lost function. Fingers moving is a big deal. Breathing without a vent. Being able to pee. Sweating so that overheating doesn’t lead to AD. So much is doable.

    As you’ve noticed, there are some things being tested in people with SCI now, which — oy! — only 15 yrs ago seemed like it would never, ever happen. That it happened & will keep happening isn’t just because some scientist got lucky … it’s also because there are people in our community who push for funding & push for less bureaucracy & push for more scientists in more labs. The more trials there are, the quicker we’ll get to a day when those things are on the market and available and covered by insurance.

    So, just a reminder that it’s not either/or. It could be both/and. Yes, we love our life and each other. And yes, we join groups to advocate collectively because every scientist I’ve ever met says that our community has a big role to play in making things happen. There will be a date on which they’ve truly figured out how to help make some things better; we can make it come sooner than it would if we just wait.

    If you’re interested, last year I was asked to write about the science & the community by the Christopher Reeve Foundation. I made a book that’s free to download and free to order as a hard copy. You’ll like the main title:
    Don’t Call It a Miracle.

    Cheers & thanks again for the blog!

    • Sam & Chelsea

      Hey Kate! Thank you so much for your comment and for letting us get a glimpse of your story! We will definitely check out your book, it sounds very interesting! And you’re right, we do love the title!! Much love!

  • Amy Fraser

    I totally get where u guys coming from I am confined to Wheelchair . U just positive and strong. In last two I am trying to stand hopefully walk someday. I been using Essentail Oils. They are amazing . I been in out 2 relationships this guy I have now is Abled Body and he did not know I was in chair til we met and here we are today moved in with each other and engaged . Loving life. He helps me no matter what Unconditional.

    Thx Amy Fraser

    • Sam & Chelsea

      Hey, Amy! That’s amazing! We are so happy that you have found love =). Keep doing what you’re doing! Much love

  • Marcy

    Walking isn’t the Gold Standard. So I wish people would quit wanting it for me. I’ve never walked and people think that’s so sad. A woman in an elevator was pitying the heck out of me that I never walked as if walking was the end all–beat all. Lady, I know why I’m taking the elevator, what’s your excuse? When people ask to pray for me, I ask them why. Of course they always want to pray for my “healing”. I need healing in lots of areas of my life, but my inability to walk isn’t even on the list. People need to quit pitying those with OBVIOUS disabilities. Everyone has some kind of disability. I neither pity nor offer to pray for those who wear glasses, so what gives?

    • Sam & Chelsea

      We couldn’t have said it better, Marcy. The inability to walk is not something to be pitied or a problem that needs to be fixed. Some people are perfectly fine with not walking and others need to accept that. Thanks for reading! Much love

  • ANDY

    Hi. Great article.
    I am a c5 quad for almost 40 years and have had a full life. Travelled the world, married with 3 kids, good job, married for over 30 years. Drive a van and retired now.
    But still read up on so called cures with interest.
    Andy

  • Laurie

    I wrote an email to my family and friends and included this in it ~ I am a T10 complete paraplegic woman for 5 years….. I’ve experienced everything you mentioned and I’ve also gone from being obsessed with healing myself to living a full and active life. I admit I didnt understand the people who stopped trying until I became one myself and saw that I was really living my life. You did a wonderful job to help others know that this comes from honesty and vulnerability. I believe there will be a cure one day for those who do suffer the injury. Of course there are challenges and I can definitely say that “not walking” is the least of my concerns. There will be days I wish I would have my legs but for the most part I really enjoy who I am exactly as I am. I’ve participated at gyms and in robotic leg trials….all of it was exciting…challenging…and empowering. I took all the good stuff….but when I go home I am back to my chair and the daily grind =) It takes someone who can afford all of it and also a very committed team to keep it all going. That is an amazing thing if you have it….but I realized I was happier being with people and spending time doing things like you mentioned that involved my loved ones, traveling, and going on adventures in my wheelchair. It’s fun to adapt! Thanks so much. I’m inspired to write on my blog again and if you’re interested I’ll leave a link in the box below. Take Care, Laurie

    • Sam & Chelsea

      Thanks so much for commenting, Laurie! It’s interesting to hear from someone who was attempting to walk again and then stopped. We are so happy to hear that you are living your life to it’s fullest and that you have embraced your wheelchair and turned it into something positive. We are definitely interested in checking out your blog, send us the link at info@wheellove.ca. Much love!

      • Julie New

        Dear Sam and Chelsea,

        I met and fell in love with Rob in 2005. He sustained his injury in 1992 and I think you have described perfectly what happens when life change happens.

        I remember him clearly telling me how he wanted to be able to ‘stand’ to get married to his then fiancé (they were 6 weeks from getting married when his accident happened). He even went ahead and had pioneering surgery on his hip to help him do this.

        Needless to say all his attempts to stand/ walk were not successful and neither was the relationship.

        When we met he had gone through the powerful grieving process and he wrote a beautiful letter to me the year we met called ‘a new dawn’.

        I honestly never saw his chair only Rob.

        He was a genius design engineer and was determined for us and others to enjoy an intimate relationship despite challenge in the bedroom. We brought MYTENRING to market and it sold well in online pharmacy.

        I am so proud to say we married on New Year’s Eve 9 months before Rob died in 2012.

        He made me so happy and I have been on a similar journey of grief he experienced losing the ability to walk since he passed.

        I actually made the decision to bring MYTENRING back to market last year: Rob’s legacy to ALL couples: his story is here: http://www.lovingsupport.co.uk

        Warmest wishes
        Julie New
        julie@lovingsupport.co.uk

        • Sam & Chelsea

          Hey, Julie! We are so glad that you got to experience such an amazing and life changing love, even if it was for too short a time. Thank you so much for your continuing with Rob’s dream and providing a product that can change the lives of many. Much love

  • Steve Underwood

    Thanks to my daughter, Melissa (24), for sharing this on my facebook. Her diving accident was about 2 yrs ago (C-6). We had pretty much both been asked what was wrong with us, personality wise given our headstrong nature, many times before her accident. We had been told how many people didn’t like us. The level of respect shown by our friends, and sometimes just acquaintances, has turned around our lives. We are more satisfied with the people we are than we have ever been. She has a very strong post-accident boyfriend and is back at college pursuing her education degree as a 5th year senior. His care has been phenomenal. Our relationship is the best it has ever been. We are now so thankful for some of the personality traits she inherited from me. I appreciate so much your uplifting video and all of the comments and replies. We have a strong faith, but as I shared in a church service, “thank you for praying for Melissa, but remember to pray for all of those with a SCI while you are praying.” I agree that you will be doing a great thing to accept the conversations and prayers that people want to have with you. You may never know the seed you plant when you let them into your space.
    Keep up this marvelous, uplifting ministry.
    Thank you so very, very much,
    Steve Underwood
    Eden, NC

    • Sam & Chelsea

      Hey Steve! Thank you so much for your kind words. We are so happy that you guys have such an amazing relationship and that your daughter is doing so well! Thanks for reading. Much love

    • Laurie

      beautiful beautiful story ~ I’m also with an amazing post injury boyfriend ~ not that its the only thing that’s been amazing but it certainly is incredible to feel fully accepted into the love of your family and someone you can call a partner. Congrats to your daughter and beautiful words. We can learn to reshape all of our relationships when these things happen. Thats what I did too =) It’s the journey of love

  • Liam

    Am sometimes jealous of people with a cut and dried SCI. I had a partial SCI and 4 years on I can stand and walk ( with a serious limp) but I can’t run, can’t really put any weight on my damaged side with a knee bend and have chronic pain most days. I sometimes wish that the sci had been more complete and then I wouldn’t be so torn and putting so much effort into rehab just to maintain what i have. I know being in a chair full time has its issues too, but it often looks like the completed I know are far happier and getting in with a “normal” life than I am.

    • Adrian

      Not really all that u think bro I’m a t12complete and it still comes with a lot of problems, more lack of joint stability and increased pain in my lower limbs from lack of muscle use and joint pain, the los of muscle movement really stresses me out, because I can’t really contract my muscles in my legs but I can feel all the pain in and through them from my hips to my knees and my toes, I wish I had more motor function so I could keep making my legs stronger and from letting them decrease

  • Karen Mathurin

    I know you don’t want a prayer, but my prayers are different, so keep an open mind when I say: I’ll say a prayer for you Chelsea, James and for your family. God bless! O:) The day is coming when every disease and affliction will be healed and James will walk again! It may be sooner than you think! O:)

  • Donna

    Every consider that prayer given to you just might have healed someone else’s heart even for a moment, many able bodies out there have there story of family and friends with sci and are feeling disconnected and you just might be that connection at that moment,that prayer might not really be about you but about there way they feel they can connect to there loved one,so maybe it’s not you there trying to heal its themselves and in turn it is you that is the true healer for them.

    • Sam & Chelsea

      This is a very good point, Donna. We will definitely look at it a little differently next time we have someone want to pray for us! Maybe we will even walk away with a smiling thinking that we helped them in some way. Thanks for opening our eyes a little more!

        • Sam & Chelsea

          Hey Angelica! We feel privileged that you have read our blog! The paragolfer is an amazing invention and has done so much for so many people! For me (Sam) it was the first time I had seen my husband stand since his accident. It reminded me of how tall he was and that I had to stand on my tip toes to kiss him, which brought me to tears. So thank you and Anthony for giving me that moment! Much love

  • Jeff Brown

    This is a hard one to reply to . I had an accident when I was 17 years old and believed for many years that the harder i worked and the more I believed I would eventually be able to walk again . Well It is now 36 years later and I am still sitting .

    If your spinal cord is damaged no matter how hard you try or believe it will never happen and you can never blame yourself . Its like saying a blind person see again by working hard to see . Lol never happen .

    Sometimes the only thing to do is make the best of what you got and enjoy every minute of everyday. Dont stop dreaming but be real

    Love to all Jeff

  • Sarah

    Very well said…I am very religious and believe in divine healing through instant and medical means. Even that may or may not happen for my beloved, Sam, I am not going to love him any less or want to live life any less with him. So many have said, ‘You don’t know what you are getting into. Life is difficult in the best of circumstances, why add this to life.’

    Sam is just as worthy of love and happiness as anyone and him being in a wheelchair does not change my relationship with him or Christ, because he doesn’t walk. He is beautiful and interesting and desirable in every way…He just doesn’t walk. It is a big deal, that is really no big deal. 😊

    • Sam & Chelsea

      People are right, life is difficult. Having a loved one in a chair doesn’t change that, or add to it. Everyone struggles in different ways. Thanks for commenting, Sarah!

  • Brett Waldmann

    If you think that walking again is just a matter of willpower or shear determination this is just not the case at all. All injuries are different and not everyone has this luxury if they are so severely injured that they have no way of doing this without some medical intervention as in stem cells and or other so called cures.
    Trust me I know and I also know that anyone with a spinal cord injury has the determination to walk again. For most it is just not possible at this time in history and the current cures available that by the way regular people can’t afford.. Sorry I didn’t mean to go on some kind of a rant…. Brett

    • Sam & Chelsea

      Rants are good, Brett! The whole point of this is to start a conversation with people who have differing opinions. Thanks for commenting! Much love

  • Tracy

    I guess I don’t see it as that controversial to say you’re fine with your guys not walking. I agree! You’re accepting them as whole, not needing or wanting more from them than what they have to offer you now just as they are. We are going to have similar mentalities on it as our partners, I think. If our partners were set in the mind frame that the most important thing is to walk again, that would probably be important to us as well. I have been with my husband for almost 20 years (he’s a para) and haven’t spent one minute wishing he could walk- neither has he. He told me very early on that it wasn’t important to him at that point to walk and he wasn’t hopeful for a cure in his lifetime, or at least one that would benefit him. (He regularly wishes for bowel of bladder cures of course!) He was already settled into his life as a para, and “walking” was never something either of us think about at all.
    Good for you for loving your partners for exactly who they are! I think it would be a sad partnership if you wished your guys could walk when it’s not important to them.

    I try not to let these comments get to me, and for the most part, they either don’t happen much anymore or Ive learned to block them out almost completely. People do mean well! But man do they say the most unbelievable things at times.

    • Sam & Chelsea

      Hey, Tracy! Thanks for commenting! Good point, I don’t think we know of a single person with an SCI that doesn’t wish for bowel and bladder control! That is definitely more important to most than walking. Much love!

  • Dalyce

    I am so impressed with your comments and approach to this subject(wheelchair spouse) and it will help people to see your side of things and have a voice that would be different from other’s inexperience and naïvety. I especially think your message of accepting your spouse “just the way they are” is a message that most people should approach life with in any marriage or relationship. I think everyone wants to be loved for who they are whether they are in a wheelchair or not and your story is such a great example of accepting your friend/spouse for who they are and not what they look like or what they can do. Love your journey and life with happiness is an attitude that is chosen not matter your circumstances. Wheel on!!

    • Sam & Chelsea

      Thanks, Dalyce! You’re right, the more people can learn to accept and love other people just the way they are, the better this world will be!

  • Liz

    Great Post!!!…reading your post is like reading about someone else describing my husband too. He has been in a wheelchair for 20 years now, since he was 16. We have been married for almost 10 years and we have a 7 year old son. The only time I wish my husband could walk again it’s just for my son to see his dad walking. Don’t get me wrong is not that I don’t want him to walk again. it’s jut that is not his priority. He is a super active man, he plays all kind of sports with our boy. He takes him fishing, hunting, go swimming with him. He is an awesome father. He has shown our son that his wheelchair is not a burden. One time he even went to the emergency room bc he was bending and pressing his stomach for too long while playing with the sand making sand castles at the beach that a vein ripped and caused a slightly internal bleeding. Just building memories with our little boy. I call my husband my sunshine because he is a very happy morning person always singing and ready to go not a grumpy one like me lol.

    • Sam & Chelsea

      Thanks, Liz! Glad you can relate! Kids with parents in wheelchairs get a whole new perspective on life. They are more accepting and understanding of people with differences. We are so happy to hear that you’re little guy has such an amazing dad who loves spending time with him! Much love to you and your family!

  • Jason

    Thank you guys so much for this post, it really hit home for me. I am a T5 complete and cannot tell you how many times I have gotten the “well I knew a guy once” comment. It is really beyond my comprehension how some people can think that it is possible to just “will” my legs to work. Or even the idea that I will just “get better.” I don’t have the flu. Much like you guys, my girlfriend and I have an amazing relationship; but it does not come without struggles. My being in a chair has never been one of them. While I definitely appreciate people’s assumed best intended concerns and well wishes, I really wish they would ask themselves one question…Would you feel compelled to approach me if I was not in a wheelchair? Thank you again for another inspiring post.

    • Sam & Chelsea

      Thanks for your comment, Jason! We agree, relationships are work and there are always struggles… none of which revolve around the wheelchair. Glad you and your girlfriend know this! Much love to you both!

  • Jason Chiles

    Agreed this is a fascinating topic that does cause a split in the SCI community. Do you live your life on wheels as best you can or do you fight for a “cure” and spend that energy and money reaching for a cure. I admit I tend to be pretty much for the former argument, as my wife and I are making the best of our lives and not letting my injury (also due to my own arrogance as a 17 year old) stop our lives. That’s my choice , more OUR choice and we’ve decided this is just a change in our life path. The key is that it’s an individual choice. If anyone wants to go down the route spending money on treatments, participating in treatment experiments, then more power to them!

    The key is to do what is best for you and the people you love, to strive for your own goals and not be defined by your injury. Sounds like those of wheel love are doing a pretty damn good job of that. Here here!

    • Sam & Chelsea

      “The key is to do what is best for you and the people you love, to strive for your own goals and not be defined by your injury.” We couldn’t have said it better, Jason! Thanks for reading! Much love

  • Tyler

    This is indeed an interesting topic; one that I took on from day one of my injury. I knew my spinal cord was ruined….and they couldnt fix it. Tthe situation I was in was in part my own fault. I knew I was putting my family and friends thru hell I owed it to them to make the best of the situation. The best IMO was not waiting for a miracle, it wasnt going to be sadly sitting in a wheelchair waiting for a cure. When I was injured there was talk that a cure for SCI would probably happen within 10yrs. There was no way I was waiting a decade to get on with life….the time to make the most of it started in the ICU were they we keeping me alive. Oh ya….Nov. will be my 27th crippleversary…good thing I didnt wait.

    • Sam & Chelsea

      Thanks so much for taking the time to read and comment, Tyler. We are glad you didn’t wait too! 27 years, that’s crazy! Happy chairversary!

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