Your Chair Doesn’t Disappoint Me, But…

Disappointment (noun):

the feeling of sadness or displeasure caused by the nonfulfillment of one’s hopes or expectations.

Everyone has been disappointed; in a situation, in a person, in an event, in a set of circumstances, in themselves. It’s that moment when you realize that your expectations don’t quite match your reality and you find yourself feeling defeated. It’s an unfortunate, inevitable part of life. It can lead to regret, it can lead to depression, it can lead to anger, it can lead to resentment.

So what do you do? Do you lower your expectations in the hopes that next time your disappointment won’t be quite so bad? Do you stop trusting those who have let you down, denying them the opportunity to do it again? Do you become determined to change your situation or circumstances to avoid the same disappointment repeatedly?

But what if you can’t change things? What if you are stuck with your situation and your circumstances and your expectations aren’t unrealistic to begin with?

CHELSEA SAYS…

This is a very hard topic for me to discuss because 1) It may come across quite selfish and 2) it’s something I still struggle with.

Everyone thinks that being in a relationship with someone in a chair is difficult and has plenty of hardships. It does, however, as we’ve said many times, love is love and it’s just like any other partnership. When people ask me what the biggest challenges are dating someone in a chair, I usually come up with a sly comment and laugh. “My toes get run over all the time” etc. Well in all truthfulness, because this blog is about truth, my biggest challenge dating James is dealing with disappointment. I really hope some of you can relate because this is an embarrassing confession.

Disappointment has been a sneaky critter, slipping in and out of our relationship, popping it’s head up every once and a while and surprising the heck out of me! It has been the stem of several disagreements, the cause of many cries and the result of shame and guilt. So where is this disappointment coming from? The main source of my disappointment is not that James is in a chair, although sometimes it may come across that way, it is the lack of accessibility in our city, in our country even across the world. Don’t get me wrong! This is NOT a rant on how inaccessible our planet is. Over the past few years we have all seen major improvement and continued efforts to create access for the mobility impaired. I have come to terms that not everything is going to be wheelchair accessible but this realization has come with many set backs and you guessed it…disappointments.

I just noticed recently that I have a severe case of FOMO; the fear of missing out. Everyone is going to check out that new lounge this weekend, I hear it’s super neat! I also hear every single chair and table is bar height. I can already imagine James’ neck cranked way up high to talk to everyone…not being able to order a drink because the bartender won’t see him, all in all not a very enjoyable evening for James. So do I go without him? Probably not. I would like us both to go out and experience this new place together, hence where my disappointment comes from.

I remember driving down to Florida and seeing the turquoise water of the ocean for the first time! I was so excited to jump out of the car, run into the white sand and plop my feet into the ocean! I was vibrating, I had never seen a beach or water so beautiful. We pulled over in search of any spot that may be accessible to wheel down. We spent an hour and a half trying to come up with solutions and by that time the sun had set. I had tears in my eyes and had what I can only classify as a hissy fit. I was a hot mess and then the words came out of my mouth….

“I wish you could just walk”.

I saw the hurt in James’ eyes and instantly regretted what I said.

There have been several times since that occasion where I still deal with disappointment:

-Planning a date only to realize the establishment has 3 flights of stairs and no elevator.

-Traveling to many beautiful beaches to go on a romantic walk… with myself.
-That hike up that mountain would be a no go.

With all that being said I have also realized that these little moments of disappointment are merely my own. Most of the time James could care less to walk on the beach, go for a hike or check out that new restaurant. So how do I overcome this issue? I am hoping I am not alone and hoping YOU as a reader may have some suggestions as well.

We use laughter and humor to get through most situations, so I have learned to laugh these things off; turn the situation around and create a positive. If I dwell on the things we can’t do I can’t look forward to the things we can do. I have also learned that it is ok to do things on my own. Sure it would be more special or fun if James was there but sometimes it’s just not doable. I have tried to center myself in the middle of a white sandy beach and say, enjoy this moment, it’s all yours.

SAM SAYS…

Having a husband with a physical disability has lead to disappointments of a completely different nature. We’ve all been disappointed when we couldn’t go on a vacation with our friends because we couldn’t afford it or couldn’t get the time of work. But not everyone experiences the type of disappointment that comes when you can’t go on that vacation because the resort isn’t wheelchair accessible.

Over the Christmas holidays, a city 4 hours from where we live put on a Christmas light maze event. It was supposed to be the biggest one in the world, it had a Christmas market, live music, food vendors and their website said they were 100% wheelchair accessible! I was so excited that Shawn and I planned to make an entire weekend out of it. We convinced all our friends to go, booked a hotel, bought tickets and drove the 4 hours. Once we got to Vancouver, we checked the website again for times and noticed that they had changed their accessibility to say that some manual chairs may have difficulty (due to the rainy weather Vancouver had been having) but, there was a power chair available for use, free of charge. When we got to the event, we found out that the ground was either loose gravel, which would have been a nightmare even if it hadn’t been all mud puddles from the rain, or soft bark mulch. So Shawn could barely wheel at all, and when we asked to use the power chair, they told us that it was out of service.

 

My disappointment quickly turned into frustration and anger and there was a selfish, fleeting moment where I hated Shawn’s wheelchair. Which was instantly followed by guilt. I had been excited because it was something different, something new, and something fun we could do together; not because I cared to try to find my way through a giant maze of Christmas lights and oversized glowing reindeer. Shawn, on the other hand, felt that my anger and frustration was directed at him… he was disappointed because he felt like he was holding me back. He was upset because he knew how excited I was for this light maze and he wanted me to do it without him.

And this broke my heart.

This wasn’t his fault. Why should we both feel guilty and upset because of something that was beyond our control? The event organizers had lied; don’t say something is accessible if it isn’t. And if you don’t know if it is, don’t pretend like you do and make false claims. I really do believe that it is that simple.

There have been numerous times during our relationship that the simple fact that he is in a wheelchair has lead to some form of disappointment. Like when we drove to Florida and stopped by the Carlsbad Caverns in New Mexico only to find that the elevator down into the cavern was “indefinitely broken”. Or when we went to the Grand Canyon and some of the lookouts and none of the hiking trails were wheelchair friendly. But never once in the 8 years that Shawn has been in a wheelchair have I ever felt like he was holding me back. It’s actually the other way around. Because of his disability, I have met people and experienced things that I wouldn’t have otherwise.

In the end, I think it comes down to perspective and how we handle our disappointment. We can’t change the fact that Shawn is in a wheelchair. We also can’t change the fact that some things are just never going to be wheelchair friendly. What we can do is acknowledge our right to be disappointed; Shawn didn’t choose his wheelchair, but I’m allowed to be upset when we aren’t able to do something because of it as long as I am aiming those feelings in the right direction and not towards Shawn. We can also educate others. If someone says something is wheelchair accessible and you get there to
find out that it’s not, spread the word; tell the event organizers so they can improve it and write a review so that others in your situation can avoid the same disappointment. Try to make the best of it anyways, who knows what kind of unplanned adventures you can have when your plans fall through. But most of all, talk about it with your partner. Make sure you know the root of each others disappointment and work through it together.

You’re going to be disappointed; it’s unavoidable. The fact is that this world is just not accessible… yet. We all have to advocate for access for those with mobility issues. We have to take a stand (pun intended) and make it known that inaccessibility doesn’t just affect those in wheelchairs; it affects their families, their friends, and their loved ones, sometimes more so than the wheelchair user themselves. What we have learned though, is that our disappointment is fleeting. It comes and then it goes just as quickly as it arrived because really, this life we live with our wheel love’s is incredible. It’s crazy and it’s quirky and it’s different; but it’s amazing. And the moments of awe and triumph and love far outweigh the moments of disappointment.

Pushing on…

Sam & Chelsea

33 thoughts on “Your Chair Doesn’t Disappoint Me, But…

  1. Thank you so much for posting this.
    I have been dating my beautiful wheelman for 10 months. The first 3 months were bliss (the wheelchair was invisible to me), but I was unaware of how hard he was trying to keep up with me and my expectations.
    Then as things progressed and I noticed he was cancelling on plans to go places
    Eventually reality kicked in. He began cancelling plans more often and I started feeling this dreaded disappointment.
    I still love him very much, but am learning that this is indeed a big challenge for me.

  2. I’m reading this from the U.K.
    It’s so nice (if that’s right) to see how I sometimes feel written by others and that I’m not a bad person.
    My husband was born with his disability (spinda bifada). Ixx

  3. Thank you so much, ladies. It’s been really difficult for me, I’ve been feeling so down lately and you have articulated this feeling of disappointment so well. I wish I was stronger to overcome this. Your blog has been so helpful. Thank you.

    1. Glad we can help, Rachel! You are strong. You got this girl! If you ever have any questions or just want to rant, feel free to contact us at info@wheellove.ca or look us up on Facebook! Much love!

  4. Great article and your honesty and feelings show your passion for your love and situation. As a 30+ year quad I can say with no doubt you are justified in your frustration and anger; as well as your positive outlook on life. Accessiblity gets better each day but know that able bodied people are usually the ones that take the disappointment the hardest (maybe because you have a choice, or just less used to it? Sad I know.) and your disabled partner is likely more disappointed that he/she can’t see you enjoy the moment the way you wanted to. Seeing your partner disappointed is harder than your own disappointments in my experience. Best to you both! J

  5. I so needed this. My husband became paralyzed Nov. 28, 2015 in an attempted armed robbery. I hide my disappointments from him a lot because I know he feels the same but can’t do anything about it. I try to write about my feelings on my blog but sometimes it’s so raw and painful. Thank you for blogging about your experiences. They encourage me.

  6. We %100 relate with you! Most places that say they are accessible are difficult for a wheelchair user to move around alone. We are very fortunate to live in one of the most accessible states in the US, which is California, by the way, if you want to check out a beach or bike paths, all along the California coast is well known for accessibility and you can rent wheelchairs that go right out to the beach! Anyway, I find one of the most important things we can you as wheelchair partners is be there for each other! Thanks for your blog

  7. Hi from Macedonia!
    Reading your blog I could not cease but to notice that your disappointment comes from your expectations, not from the fact that your partner is in a wheelchair. So, you have a clear picture how things should be, where you want to go, what you want to do….imagined, imagined pictures. And then you have a reality. These two realities do not match and only from that your disappointment comes.
    If it was not the wheelchair it will be something else. And it is not only you…but all of us. The way the human mind works is to find where our imagined, wanted reality does not match with the reality we live and just complain. To think that something outside of yourself should be different so you not be disappointed, is just avoiding responsibility for your own feelings. That’s a very hard thing to put on someone else.
    You know what? Everything that you described, if you saw it differently you will experience it differently. If you are person with awareness that your partner’s presence is enough for you, you will be able just to see the beach and have a beautiful state of mind, a peaceful one. No matter if you would go to swim or not, you will be peace with reality and took responsibility for your choices and feelings. You was focused on what you are missing and that’s where your hardship is coming. You create your disappointment, you feed it, none else.
    I dont want to offend you, but I want to show you that there is a different way of seeing and experiencing the same things. If last time you chose to complain, next time chose to bless, to be happy for what you have…I guarantee you different feelings and experience.
    Sending much Love,
    J

  8. The timing of this couldn’t have hit more aptly for my wife and I. We had a major blow up the day this came out on this exact topic. I apologized for being a disappointment to her…and she lost it on me…with good reason. The context was mistaken, we both blew it out of proportion, but we knew where it came from and we talked it through. I understand that my wife fights the same battles the ladies do here…and that I fight the battle of not thinking I am a disappointment.

    Flash forward a few hours, we are at a home game for the Toronto Rock (National Lacrosse League…Go Rock Go!) just getting settled in when my wife pushes her phone at me. I almost took an errant lacrosse ball to the head I was so engrossed. Thanks for the thoughts and the points ladies. It is good to know we aren’t the only ones who struggle with this feeling. In the end, the struggle just makes us stronger in ourselves and in our love for each other. Even if we have to knock heads on occasion (she wins those fights…unless I can get a head of steam going downhill) 🙂

    1. Well, we are glad to hear you escaped a head injury while reading Wheel Love, lol! We have gotten so much positive feedback on this post and we are so happy to know that you guys can all relate to us! The blow outs are real, we have been there, lol! Thanks for reading and commenting!

  9. I have been with my wife for 15 years . She has been in her chair for 32 years. Life can be hard for us at times but I love her to bits.

  10. Being the one in the wheelchair, I too understand this disappointment and how hard it is to direct those emotions towards the situation and not at myself. Having a back up plan that we know, with 100% certainty, is accessible does help when we’re looking to do a local event. Traveling is by far the most frustrating because you. just. don’t. know.

    For what it’s worth, my boyfriend has family in the Tampa area. Clearwater beach has wonderful accessible walkways and offers free beach wheelchairs. I hadn’t been able to go on the beach for over 10 years until our last trip down there. 🙂

    1. Hey Jenn! Thanks so much for commenting! We agree, traveling can be difficult because you never know. Thats awesome that you were able to make it onto the beach! All beaches should be like that, hey?

  11. When I read the tagline I thought this was going to be about some emotional challenges of living with a guy who sometimes gets tunnel vision regarding his disability and forgets that we all have issues. I’m not disappointed by the chair, I’m disappointed that you sometimes think because I can walk my problems don’t matter as much. *sigh*

    But yes, the kinds of disappointment you both describe is as keen as a blade when it strikes.

    I’m lucky (yes, selfish me is lucky) that my husband’s a very low para and is totally fine with dragging his chair up or down stairs. Or, more likely, having me drag his chair… Although he can and will do it if I’m not around.

    Seeing a guy butt-climbing your “accessible” venue has been REALLY eye-opening for many event managers.

    On the other hand, I definitely do NOT recommend that wheelchair users drop to the floor, climb stairs, or hang from grab bars just to see a concert. Skin integrity is too important.

    But, it’s worked for us.

    1. Hey, at least our title grabbed your attention, lol! Haha, we can only imagine the looks you guys must get when your hubby is bumming up the stairs! That’s fantastic! Glad you guys have found a way to make things work for you!! Much love =)

    2. “I’m not disappointed by the chair, I’m disappointed that you sometimes think because I can walk my problems don’t matter as much. *sigh*”

      THIS.

      My husband is a recent paraplegic. His accident was in September, and we are now into February. I love him to pieces, but have been struggling with the adjustment to our new lifestyle. Whenever I get angry, frustrated, sad or emotional, he looks at me and says, “Put it in perspective. At least you can walk.” It made me feel like he was completely discounting my emotions and how hard this has been on me as well.

      We’ve been having issues with accessibility as well. Restaurants in our area tout that they’re accessible, then have one or two stairs he has to navigate to get in the building. Sidewalks here are a mess, and a nightmare for him to get around on his own. It causes a lot of frustration for me because I don’t want him to be closeted up because of his disability.

      1. It’s no picnic, that’s for sure! My hubby was born with his disability (spina bifida). He considers his disability as a part of him, not something that happened to him… And sometimes he STILL loses perspective.

        I’ve been a part of many different groups with some sort of disability focus and I’ve heard over and over the first few years are the worst after a severe disability. The (sort of) good news is, all other things being equal (finances, overall health, etc. ) a person will stabilize around the 2 year mark.

        Studies show that about 2 years after any major life change, good or bad, most people are as happy (or unhappy) as they were prior to the event. It might not seem like it right now, but his disability will normalize for both of you.

        In the meantime, you need love and support, too. Your concerns and colds and bad days ARE just as valid as his issues. What he says to you is incredibly selfish and invalidating, but he probably can’t see past his own angst in the moment. I’m not demonizing him, but I see it a LOT in partners.

        Please allow yourself time for your own healing and processing. A good counselor with experience in disability would be a place to start.

        *Hugs*

    3. Dude watch the skin. Did my share of butt jumping stairs and it WILL catch up to ya.
      Going through some skin issues butt after 34 blissful years I’m paying the price!
      Butt don’t stop having fun

      Later
      The Lonely Paraplegic

  12. Thanks for the cry………..Great confession………..Really nice to know we are not alone in our “bad” thoughts. Humour does work but also sometimes a good cry is even better.

  13. We are “in charge” of our reactions to things…attitude is the ultimate boost to get us over it all–or under it, or around it, if that is the only way to get there:-)))! Disappointment hurts, and education is key to helping us through it. Love your posts! All the best to you, James & Chelsea!

    1. Thanks, Marilyn! We have a friend that lives by the quote “life is 10% what happens to you and 90% how you react to it.” Attitude is key! Much love =)

  14. I have been happily married to a parapalegic for 19 ‘years Just writing the word parapalegic is strange to me because I don’t see him any differently then anyone else. I LOVE your blog and thank you both for writing from the heart and a truthful place. I have experienced all that you two have and love how you are helping to educate those that are interested. I look forward to your next post.

  15. Love this. Disappointment is in Every relationship but it certainly doesn’t mean you don’t love each other, Thanx again ladies for making me think about things differently. 😍

  16. Dear Sam & Chelsea

    I’ve been following your blog for a while now, and whenever I have a spare moment I will read your latest entry.

    I’m a quadriplegic confined to a wheelchair for the past five years due to a surfing accident. So I can relate a lot to the situations that you write about. I very much like how you wrote about disappointments here, because it’s very true. Personally I believe that the hardest part about being in the chair is the feeling of holding back those around me, to the point where (in the past) I refused to go out to almost any social events at all. But slowly over the years with the nagging and pushing of my friends and family I now find myself constantly out of my comfort zone. Every now and then disappointments still pop up, but I always remember to pause, take a deep breath and accept that some things are out of my control.

    Although I’m not currently in a relationship, I too understand the disappointment of being unable to get onto a beach or into a restaurant etc. which then leads to frustration and guilt felt from the both of you. But I believe that you got it right, if you focus more on what you can do rather than what you can’t do, the ‘can do’s’ far outweigh the ‘can’t do’s’.

    Anyway that’s just my 2 cents.

    Looking forward to future blogs and wshing you all well!

    Lincolne

    1. Thanks for taking the time to read and comment, Lincolne. We are glad that you have pushy friends who have gotten you back out and about. We have slowly learned that the people who care and really want to spend time with us and our wheel love’s don’t care if we can’t go to the beach… or they’ll find some way to make it happen (there have been more than a few piggy-backs!). Keep in touch!

  17. Thank you, ladies, for enlightening us about life’s potentially great moments turning sour. In spite of the barriers that wheel couples and families face, we must realize that we are fortunate to live in the present age of technology that gets wheel lovers past the barriers that once held them back. Keep up your lovely work. I always look forward to a new post from you 🙂

    1. Thanks Susan! Today’s technology is amazing and we are so looking forward to see where it goes from here! You’re right, we are very fortunate!

    1. We are so happy that people are relating to us! It’s nice to know that we aren’t alone =)

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