Do You Feel Wheelchair "Bound"?

DLM- Article

Do you feel “Wheelchair Bound”?

Here at DLM, we would like to take a stride to discuss topics that affect us all in some form or fashion by people’s points of view in the matter. In our first article, we cover the implication of being “Wheelchair Bound” and what that means in four questions.

Special thanks goes to Erik Kondo for the concept of this article!

Tamara Mena T2 Paraplegic

DLM-In what ways do you feel bound to your wheelchair?

 TM- When I want to take a step on my own, step out of something and I can’t… especially when it seems so easy and close, but at the same time so far away and unreachable. For example, when I want to get out of bed and I’m in a hurry, I wish I could just get up out of bed, get in the shower and go; instead of doing so many steps (“hops and transfers” I should say) to get to ONE place. I feel somewhat “bound” to my wheelchair in those instances.

 DLM-How do you cope with it emotionally?

TM-The truth is that to get around, if I even want to get around, I don’t have to use the wheelchair. I made the decision to use one. After I became paralyzed, I was left with very few choices, which were pretty much 3, in my mind:

1. Stay in bed all day and be in this case “bed-bound”

2. Crawl to get to places and drag myself around; which in some countries some people, very unfortunately, have to do because they don’t have a choice and means to get a wheelchair, period.

3. Use the wheelchair to get around as my main mode of transportation, other than my car. This choice was the best one, most logical, and healthiest for me, regardless of what people thought of me.

*Let me tell you that when I realized this, since then, I feel deeply thankful and grateful towards my chair because without it, I wouldn’t have done what I have done or continue to do in life. Not using a wheelchair would impede me to go to where I want to go in life and the many things I hope to accomplish. The wheelchair and I have become interdependent, but I don’t feel bound to it; it has helped me unbound myself (and others) in numerous ways!

 DLM-What things do you do that make you feel “free” from being bound?

TM-Skydiving, swimming, traveling/flying, waterskiing, walking in an exoskeleton, and even sometimes just laying in my bed when I just want to relax make me feel free. Sometimes I do many things and travel to places in my mind. I really do. I might not do them physically but I do it and I visualize those in my mind. Things like that make me feel free because even though my body was paralyzed 6 years ago, I freed my mind in ways I had never done prior to my injury.

DLM-What would you tell others to help them or motivate them to feel “un-bound”?

TM-In many cases, we bound, limit and restrict ourselves up. Many people are not physically disabled but disable themselves mentally and restrict themselves up from all the possibilities life has to offer, and this is different from having a mental disability. I’m talking about people who are “physically and mentally healthy” who decide to bound themselves up and restrict their potential. We can always un-bound ourselves up in several different ways and become freer. I know I sure can “un-bound” myself and free myself up in certain aspects. But regardless of your disability, regardless of what society labels you or thinks of you, YOU have got to un-bound yourself mentally, free your mind, and you’ll be surprised of everything you’ll be able to achieve and of everything that will come your way. Do it! You’ve got nothing to loose. The worst has already happened. Take risks and take charge. We only have one life, make this one count.

Andrew Skinner – C5 Quadriplegic

DLM-In what ways do you feel bound to your wheelchair?

AS-My wheelchair is my best friend.  I need my wheelchair every day.  If I did not have my wheelchair I’d truly be bound—-> to my bed.

DLM-How do you cope with it emotionally?

AS-I focus on the freedom my wheelchair provides rather than the challenges that using a wheelchair presents.

DLM-What things do you do that make you feel “free” from being bound?

AS-I am constantly working to get stronger and more independent.  I exercise and train to increase as much function as I can.  During my work outs I frequently get out of my wheelchair.  I am transferring onto exercise equipment, I use a standing frame, and I play wheelchair sports where I use a specialized wheelchair that is designed to fit me like a glove and I am in almost a cockpit that is built for performance.

In addition, on my leisure time I sit on the couch and other chairs that give my body a break from the monotony of sitting in the same position all day.  This reduces my risk of developing a chronic holding pattern that can occur from sitting in the same position all the time and can cause pain and discomfort.

I also stay active so I am constantly involved in living life rather than dwelling on restrictions.  My mind set on my abilities me free.

DLM-What would you tell others to help them or motivate them to feel “un-bound”?

AS-I would tell them that instead of feeling like you are confined or bound to a wheelchair, look at your wheelchair as your ultimate tool for independence.  A wheelchair takes you places.  I’d also encourage them to live an active lifestyle that keeps your mind focused on what you can accomplish rather than the limitations you might face.

Vanessa Osman – C5/C6 Quadriplegic

DLM- In what ways do you feel bound to your wheelchair? 

VO-Well, the first thing I would say about being bound to my wheelchair is that obviously once I’m in it, I’m not going anywhere! I’m that type of quadriplegic who’s extremely realistic – I might be able to do pressure shifts and shimmy my upper body but there’s no way that I’m actually getting out of it until someone physically helps me! (To be quite honest, I really wish that this question pertained to sex – would be a hell of a lot more of an exciting answer!)

DLM- How do you cope with it emotionally?

VO-This is a tough one… I had to repeat the question to myself several times. How do I cope with it emotionally? Well, it’s a constant reminder of what has happened to me and the position that I am in. And often that is not the kindest reminder! People have told me, “at least you have a wheelchair, you should be happy because you can get from here to there.” But, honestly I hear what they’re saying but I am my own person with my own issues and I don’t always feel that way! Acceptance is a real bitch… And although I am not the youngest injury, I still have issues with all aspects of this “alternative reality”. I am grateful to not be bound to my bed at least, so for that I am thankful… and I think that this is a great question because it forces one to think and remember that there’re so many people who are less fortunate and suffer and so that reminds me to GRATEFUL. Even if it is painful. Even if it is sad. Even if it is hard. This is the way life is now and I’ll just keep working on every step that I can little by little!

DLM-What things do you do that make you feel “free” from being bound? 

VO-The obvious: getting the hell out of my chair! Once I’m planted somewhere else, I certainly do not feel bound. It feels so freeing and it makes you feel well, at least for me, more human…? I know that sounds really bad but it reminds me of how I was before the accident – strong and able-bodied and although I may not be moving on the couch or the bed I’m not reminded of the pain and the issues I still have surrounding my accident. It is a wonderful thing to be transferred to a chair or a real bed (a hospital bed just isn’t the same!) for that matter. And once I am transferred, you best believe that whoever I have helping me, pushes that wheelchair out of eyesight because it is a relief and I can take a break from reality…

DLM- What would you tell others to help them or motivate them to feel “un-bound”

VO- Obviously giving advice to others is a hell of a lot easier than giving advice to yourself. I think we all have experienced this at one point or another in our lives and rings true for many in our community! The best advice that I can give as far as motivating someone to feel free or unbound from their chair is to truly accept your situation as fast and honestly as you can. Be grateful. Believe it or not, I do try and find something everyday that I am grateful for! Have a relationship with someone whether it be someone from your family, a really good friend, your caregiver or your Higher Power. It is the fastest way to move forward and create a focus for your life albeit one that you would probably never intended to have as a way of life. Early on after my accident one of my biggest supporters, my father, told me about the steps of DADA. (Denial Anger Depression Acceptance.) I would have to say that I vacillate quite often between all four steps. I don’t think that one can move from step one to step four without relapsing at some point. (Rehab – relapse – haha! These terms are not referring to drug and alcohol rehab or relapsing from a substance but in our case the terms are still relevant although they hold different meaning. And that just cracks me up sometimes!) Having good support and finding something positive even when you’re in a negative place has not only helped me but also countless others. I know this from being heavily involved with support groups and speaking to my peers in the “disabled community” in different countries in different states over the past several years.

Andrew Angulo – T7 Paraplegic

DLM- In what ways do you feel bound to your wheelchair?

AA- Certainly I feel “bound” because of my injury and I need to rely on my wheelchair to get around. The hardest thing I would say is most tasks and daily routines can be a struggle. Now I know I need to say this carefully because we all have personal struggles to do daily routines and all of our disabilities and abilities range from person to person. That being said, for me personally, it’s the little things that get to me, especially when I’m sick or I am feeling weak.

The hassle of trying to open heavy doors or the cumbersome feeling when I bump into things or suddenly getting stuck on a sidewalk crack in front of other people is a constant reminder that I’m bound to this chair.

DLM- How do you cope with it emotionally?

AA- I do my very best to accept that this is where I am and I know I could have been killed from my accident and that I am blessed to be able to be alive. Although certainly I have my dark days where it’s all just bad and I mourn my lost abilities to run around with my kids and just live life like I did before my accident. So my cure can surely be a good bottle of wine and company! But most importantly surrounding myself with my loved ones and feeling as best as I can be. Like exercising and keeping as healthy as possible.

DLM- What things do you do that make you feel “free” from being bound?

AA- My car! Being able to get in my car and drive where I want helps me break free of feeling bound. Also riding a hand cycle or anything that goes fast brings me back to that “free” feeling. Even simply transferring into a chair at the movies or into a booth at a restaurant. Anything other than sitting in my wheelchair helps me feel free.

DLM- What would you tell others to help them or motivate them to feel “un-bound”?

AA- I can only draw from my experiences but it really has to do with the outlook and attitude towards your disability. People feed off your vibe and I know it is easier said then done but it in order for you to feel free and unbound, in my opinion, is having a positive attitude and strive for a goal. Life doesn’t stop unless you let it and this is not to say that everything will be easy but you are here and you can make an impact within yourself and others around you.