Tuesday, July 10, 2012

Does this wheelchair make my butt look big?

Susan Skoney

Are you just really sick of being in a wheelchair? I am. I’m so sick of it I need to vent. I find being in a chair makes me feel claustrophobic, trapped and sometimes like an invalid. Or, am I “invalid”? Yesterday, during a heated discussion with my husband, in a big huff I rolled into another room. And he said, “Don’t you dare roll away from me when I’m talking to you.” If that statement hadn’t been so pathetic, it would have been funny, but I take comfort that at least I could pull off a dramatic roll.

When you are in a wheelchair, people see you differently. You are not at eye level with the rest of the adult world and can be easily overlooked or “invalidated.” How many times have people walked quickly by me, eyes ahead while I struggle to get a door open? 

Or take the incident I recently had in the supermarket, where some strange man came up and started pushing me thru the handicapped checkout lane because I wasn’t moving fast enough for him. My husband, a few feet ahead with our shopping cart, looked back, and the guy, while still pushing me, says, “Hey buddy, forget somethin’?” We should, as a group, carry small yet discreet stun guns for just such occasions, but the whole incident made me feel invisible, to say the least.

But I prayed for invisibility about a month ago on another shopping trip with my daughter. We were at a local department store and, while the main aisles are wide enough for a wheelchair, some merchandise displays can even make walking a challenge. I was trying to push myself along between two very full racks. My daughter returned from the other side of the display and was mortified that little plastic hangers holding pretty little panties were now stuck in the spokes of my chair. As I tried to extricate myself from the situation, my wheels knocked the rack just enough so the matching bras above started falling. We hung back up what we could and made a hasty retreat to juniors.

This time of year is especially difficult being in a chair. Rolling over uneven, hard grass to get to a picnic spot or soccer field can give you bladder issues even if you haven’t had them before. And the beach, well…. 

Another peeve I have with being in a wheelchair in the summer is fashion related. Summer attire is fun, bright and crisp, until I pair it up with the hot, black accessory that has become almost another body part. So as we leave the house, I ask my husband, “Honey is it my new slacks or is it the chair making my butt look big?” He reassures me that it is neither. 

I hate being in my wheelchair. My little cat Miss Lottie Lou loves being in my chair. In fact, my wheelchair is at times full of what we call “Lou-fur,” which means my backside is full of cat hair. But, who would know?

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

12 comments:

  1. people in electric cards have similar issues. The aisles are not wide enough, the store's electric cart dies in the middle of the store. I use a wheelchair in airports, out of necessity. I often wonder how some of those people would feel in our shoes. I applaud the fact that you go to department stores, I gave that up awhile ago. Thank goodness for online shopping!

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  2. You gave me a good laugh! I can't self propel in my wheelchair, so I have plenty of stories of shopping with my daughters and being left facing racks of clothes while they browse behind me and ask, "Mom, what do you think of this?" I should have never told them when they were younger and I was mobile that I had eyes on the back of my head. Do they really think I can crane my neck to check out the top they are holding up.

    I love your sense of humor! We have to keep laughing!

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    1. Oh cracking up laughing on this one! My sister and I use to do this to my mother and she would get so mad at us. But we all had a great sense of humor back then. We use to get the biggest kick when she would re-arrange a department store because everything was to tight to get through for her. Today I see things as what comes around goes around she taught me alot. Today I re-arrange those stores and ya know it's fun because it pisses me off too and I can get away with it. Mom doesn't get out so much anymore, and she taught me where theres a will theres a way. Just keep laughing better then crying!

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  3. Dear Susan, I love your story. It IS funny even though I know you really do hate it. Sometimes it's good to laugh. (see my poem, April Shower) in MS world. Sometimes it's good that we can share in that empathy. I was a teacher's assistant and because schools are so spread out I eventually went from cane, (Kinder kids called it my candy cane)to a 4-prong cane, a walker, then my power chair. At the elementary school where I worked those little kids would race to open the heavy door for me. I miss them.
    Adults are not so well mannered sometimes. That's really bad when that man pushed you out of the way because he was in a hurry! So many people today are in such a hurry that they can be rude. Not a bad idea about the mini-stun gun...
    Now that I'm retired I try to use my walker even though I'm slow. The only advantage I ever had with being pushed in a wheel chair was when we went to an art museum in Paris and as the docent led us around to the different paintings with her description- I got to be in front!
    I live in South Texas where it is extremely hot most of the year and I hate wearing knee socks just so I can wear my AFO! It's ridiculous. I'm impressed that you push yourself- I'm not too coordinated and can't do it. Keep up your good writing. I'm looking forward to reading more. Pam

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  4. We live in a cottage with 2 floors so I mostly don't use any walking aids in the house. I have to admit that it's getting harder and harder. I feel fine as long as I'm not on my feet. The sea or a swimming pool are the places where I feel the best.

    When we're out of the house I use a cane and/or my rollator, depending on how far I have to walk. I do travel and do quite a lot of walking with the rollator, although that's also becoming harder and harder which upsets me the most.

    When I want to get around our very small town I use my electric "scooter". It's all hand operated and I love the fact that it's much more ecologically friendly than a car.

    What upsets me the most is that I don't have the energy or physical ability to spend more time with my little grandchildren. They're still too young to really understand, but they love coming with me on my "scooter".

    Feel as good as you can and enjoy life as much as you can.

    Maris

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  5. I have recently just turned the age of nineteen on July 9, 2011. In my eyes, I believe my chair is my challenge but the reward is getting past another day. There are times where I do feel trapped but the way I see it is that another individual in the world has it worse than I. It is very easy to get frustrated especially when your slowly learning how to be an adult. Often times, many have asked if I would trade this life just to walk. Without thinking, the only reply I could possibly come up with is "no". The reason being is because although I have dealt with the same challenges that you and everyone else has faced just for being in a chair. It is a blessing to know that I am strong, filled with willpower and ambitious among many things.

    Some may believe I am getting ahead of myself here but that's what being in a chair about. It doesn't make you who you are but it creates which you have become. That is the beautiful part about it all. In this life, we all have advantages and disadvantages but the question is; are we going to strive to grow stronger? It is easy to become trapped, irritating and overlooked but allow people to know that you are a person, not an outsider looking in.

    ~Abney Y.

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  6. When this lady gets on a rant, she really gets on a rant! I hate to rain on your parade however, but if it were not for your wheelchair then you "really" would have something to fuss about. God forbid, but I'd hate for you to have to spend 10 months confined to bed (due to a pressure soar) with nothing to see but the 4 walls, the floor and ceiling that surround you while being neglected and treated harshly locked up in a nursing home. Oh and if that's not bad enough, your room mate (not by choice) is dealing with Cancer and has a Colostomy that is not cared for properly so the entire room has the horrific fragrance of his fecies and when you are lucky enough to get a visitor they can only handle the smell for 5 to 10 minutes before they must leave or voment. Therefore, your new friends have become the faces you are able to see on television. Get real, Susan! So what... you use a wheelchair to go from one spot to another. BIG DEAL! At least your husband has not divorced you and your daughter still chooses to spend the day shopping with you. Many of us are not as blessed as you to still have our loved one or family to wake up to in the morning and wish goodnight at the days end.

    On the other hand, I love how you added the humorous side of being in a chair. It is these crazy times that really make life in a chair (29 years and still going) easier to deal with. Hell, I live to get into crazy scenarios like that you described! Would I like to be up and walking? I cannot honestly say yes. I accepted my chair and society's ignorance about living with a disability long ago. Why? Because I have the greatest blessing still going for me... its called life! Give it time with a positive attitude Susan and you will learn to accept your chair as much as you loved walking in your favorite high heels. Your chair is nothing more than a physical accessory that allows you the freedom of mobility. It is not what defines who you, the person, are! I pray you learn to look beyond the physical changes real soon and accept the fact that you are still blessed in ways that many others are envious! Where there is love, there is life (and vice versa)! Love yourself and forget all the changes that you have no control over. Then (and only then), you will find true happiness! God bless you and your family, Susan!

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  8. Hi Susan,
    You are a terrific writer with a great wit. I think anyone with a chronic ailment should be able to vent or have a pity party every now and then. I am not wheel chaired but I have my pity party for other issues. I realize that I am fortunate and blessed but sometimes life can just overwhelm me.
    Keep writing
    My Best
    Lisa aka HypoGal

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  9. Thank you for sharing your story, believe me you are not alone!! I have to give props to your husband for trying to keep things light, even though he isn't in the chair he seems to respect the work you do while you are in yours. My best friends mother and I, whom also has MS just recently talking about how "invisible" we feel when we do use the chair. Neither of need a chair or assistance all the time, but there are the occassions where it simply isn't an option. I think that all people should have to ride in a chair, if even for an hour, in a crowd. It really takes you from the feeling of being a member of society to something else. A place where you're invisible, incompetent and voiceless. I was diagnosed in the summer, no surprise, of 2010. My first trip outside in my chair was to a small community event, it was horrible!! To say the least! I was so excited to get out and back into the world, I had spent several months in and out of the hospital and a week in physical rehab. I couldn't wait to interact again. So we arrive, right of the bat, I had to tell my longtime boyfriend where I wanted him to lead me, pain! Then he was moving me out of everyone's way....what?....Hmm, I'm never going to get where I wanna be at this rate. Apologizing for me being in the way, I said, hey she was in our way!! After about 15 more minutes, I had enough.... of purses hitting me, people trying not to look at me weird.... but unable to help themselves. It was another feeling of being helplessly mordified that I hadn't expected and being out was the best chance I had at regaining a life. For the most part I walk now and try to maintain that ability, when I do need to use my chair due to the distance, heat or pain, I have seemed to become more boisterous, making it a point of interacting with other people, no longer giving them the option to wonder or walk infront of me, if someone is close behine, i'll ask " going that way?" Or when i'm rolling past someone i'll say "hi", it may be asking some people to come out of their comfort zones, but I am out of mine. I will not be invisible, I will not be treated like an invalid, you may not look through me, I made a decision that I wasn't going to let society decide how I felt when I was in my chair. I commend all of you that face it each day and hope that we can all face our MS with a bit of a smile and a positive attitude and work to maintain our own happiness and fulfillment.

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  10. I'm with you Susan. Even though things could be worse, and wheels allow us to get places we couldn't otherwise, as far as I am concerned having to use a wheelchair completely sucks.

    Last year my friend and I were at a Broadway show. At the intermission at least half a dozen people, total strangers, leaned down to me and said brightly "Are you enjoying the show?!". In all my years of going to the theater, no one ever asked me that - until I was in a wheelchair. I swear some of them were about to cluck me under the chin or pat me on the head. I suppose they were trying to be kind, but they were just coming across as condescending.

    It does help somewhat to put a funny spin on it, but honestly, I hate being in a wheelchair too. All but a few sensitive souls either ignore you or talk down to you and, while that can be amusing, it wears thin after a while. There are obstacles everywhere, a chair is hard to maneuver, especially if your arms are weak, and your eye level, when you are already short like me, is perpetually at people's private parts. Alright, they do have clothes on, but still.

    I take what pleasure I can from life, and there is still much to be had, but I will never stop resenting what MS has stolen from me. My mobility is at the top of the list.

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  11. I just have to say if they can't make the isles big enough for a wheelchair/powerchair/or scooter then they can have fun picking up all the clothes I leave in my trail of shopping those isles. Before I was in a wheelchair I worked at a store that my sister came shopping in an complained about not getting her scooter around the racks as she loves to shop. I told her just plow through the aftermath would be taken care of by my employees or myself, and maybe the manager and corporate may decide to make the 75 stores owned wheelchair friendly.

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