DAILY LIVING & MOBILITY

Your Chair Doesn't Disappoint Me...

Spinal Cord Injury (SCI)

Sam/Chelsea Wheel Love

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.

Rolling with the Punches

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.

Fear of Missing Out

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.

Honest Frustrations

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.

Dealing with Disappointments

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 the reader may have some suggestions as well.

Enjoying the moment

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 off 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.

Experiences don't always go as planned

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.

Range of Emotions

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.

He doesn't hold me back

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.

It's All About Perspective

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

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