Question for the quads

topic posted Wed, July 20, 2005 - 4:39 PM by  Lauren
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This website is a great idea! I guess an intro is warranted so, hi, my name is Lauren. Quick cliffnotes version on my medical story: back pain--tumor found near spinal cord--surgery to remove tumor--paralysis during surgery at the T5 level. This happened when I was 15, so I've been disabled for about 7 years. You should also know that I absolutely love cereal and have been terrified of sharks since my sister made we watch Jaws when I was six.

I have a question for the quadriplegics out there. Does it make you feel worse to be around a paraplegic? Are there any things that you really don't want to hear from us? The reason I ask is because I help quadriplegics sometimes at the hospital and sometimes I wonder if I say something wrong or make things worse since I have a lower level of injury. If there's any specific advice about what to say/not to say, then I would greatly appreciate hearing about it, so I will know for next time.

Ciao!

Lauren
posted by:
Lauren
Florida
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  • Re: Question for the quads

    Wed, July 20, 2005 - 5:18 PM
    Hey Lauren,

    Great to see you out there on the World Wide Web. You should tune in to Discovery Channel tonight, it's shark week. The myth buster guys are going to the on tonight. I saw preview and a guy was hitting sharks on the snout to see if the myth was true that this is what you are supposed to do.

    Any ways, I'm trying to think back to when I was first injured and how I felt about paraplegics giving me advice and such. I was a very independent and a strong-willed thinker, and I still am, so comments that people made that may have offended some never really bothered me that much. One thing I would say you should be careful of is discussing what one can still do for themselves after spinal cord injury. The reason I say this is paraplegics have a certain level of advantage over most quadriplegics in the level of independence they can gain and what they can physically accomplish. Most quadriplegics or many I should say, are very dependent on others to do just about everything. Accepting this, it is not easy.

    I do not want to act like I know how paraplegics feel and what they have to go through, but I do believe there's a lot of difference in dealing with quadriplegia compared to paraplegia. Especially early on in the injury, quadriplegics are not thinking, what am I going to be able to do in this state?, but rather thinking, when is it going to be that I walk again? I remember being in a situation where a couple of Paras were talking about various activities one can do in a chair around myself and my friend, who is a complete C4 injury. They're like a data call conversation about life in a chair, ended up making him very uncomfortable and he had to leave situation.

    It doesn't make me feel worse being around paraplegics. Many times I fantasize a how I wish I was a paraplegic, but we both are still going through many of the same emotions and dealing with similar issues. I definitely feel like I can relate to a paraplegic more so than the average schmo walking down the street.

    When I was in Atlanta, down at the Shepherd Center, I did feel this distinct since of segregation between power chair users and manual chair users. They're always would be a group of kids in manual chairs and then a separate group of power chairs. I always thought it was very weird.

    So I feel like I have rambled way too much. What is your take on the situation? Do you feel uncomfortable around quadriplegics? Other certain topics are questions you wish to ask that make you feel uncomfortable?

    Talk to you soon,

    Colin
    • Re: Question for the quads

      Fri, July 22, 2005 - 9:14 PM
      Hi! Thanks for the tip about the sharks. I think I'll stay out of the ocean, however.

      Thanks for your candid and thoughtful response to my question. I agree with everything you said. I often forget what it felt like when you are first injured and you have that hope that everything will return back to normal. It's important to remember that, though, and to keep in mind that the person could very well experience improvement in sensation and movement over time, especially if they are incomplete. And while I always like to encourage people that they can be independent and active in sports, I should continue to be aware that quadriplegics can't be independent to the same extent, so I might should drop the Pollyanna routine and acknowledge the difficulties that one could experience.

      I hadn't noticed the segregation you saw about power wheelchair users and manual wheelchair users, but I'll look out for that. I personally feel just as comfortable around either type of wheelchair user. Yesterday, I went up to the Joni and Friends Ministry retreat in Flat Rock and spent time with a quadriplegic. (Joni and Friends is a ministry by Joni Eareckson Tada, who is a pretty renown quadriplegic). Anyway, I had a couple meals with him and learned how to help him. I wasn't uncomfortable, but I just didn't know what I was supposed to do. Therefore, he talked me through it and everything was fine. We really do share many of the same struggles--and the common denominator in most people's struggles that I have heard is not physical struggles but the social struggles that come wth being wheelchair-bound or as my mother would say "mobility impaired." Speaking of wheelchair terms, do you have a problem with "handicapped," "crippled," or any other terms used to describe people with disabilities? I personally don't have a problem with most terms. I guess I'm not a big fan of being called "gimp" but I'm not going to get all upset about it. On the other hand, one of my friends is so sensitive she doesn't even like "disabled people"--rather she only likes "people with disabilities." I think having a sense of humor and just trying not to be sensitive about everything makes it easier to deal with, but that is easier said than done.

      Hope you are having a good week!

      Lauren
      • Re: Question for the quads

        Thu, November 3, 2005 - 4:17 PM
        Sharks & Language

        Sharks are not that bad. I am a scuba diver and went on a shark dive in the Bahamas last year. One of the coolest experiences of my life! There were 6-8 reef sharks that were 4’ to 8’ long and lots of other fish around. We all sat or kneeled in a row while a diver in a chain mail suit fed the fish. He even held a 5’ shark and rubbed his belly. This put him in a sort of trance. The diver then came over and we got to rub him too.

        I highly recommend scuba diving. Unless you are clostraphobic. lol The feeling of freedom is incredible and the views are awesome. The best view are in the first 30’ unless you want to see wrecks. Drift diving where you ride the current is also a blast.

        Language is interesting and I often have fun with it. I have done a lot of public speaking on disability related issues in business and I was on the Paralympic Speakers Bureau in 1995-96.

        My pet peeve is “wheelchair-bound”. Hey I’m not tied to my chair, it’s just a tool. Walkies are not “shoe-bound”. "Disabled" and people first language like "person with a disability" is always appropriate for writings and in formal situations like in business. I frequently use gimp for the shock value. When the topic comes up with AB’s I try to take the opportunity to do some education and have some fun.

        I tell them how disabled is the preferred term from the ADA, and how people first language is an effort to recognize the person and not label them. Then I tell them, "You know we have names for y’all too. AB – able bodied; TAB – temporarily able bodied because you all are; CRAAB – currently regarded as able bodied; and my personal favorite (as you have seen me use before) Walkies."

        We have to have a sense of humor to survive life with a disability. I try to use it to make walkies more comfortable too. They cannot help being ignorant about disabilities. We were too before it became part of our life.

        Peace,
        Tony
  • Re: Question for the quads

    Thu, November 3, 2005 - 3:41 PM
    I’m Tony, a C6/7 incomplete quad. I was injured in a diving accident at 15. of course for me that was 33 years ago. Boy is gimp life better now than when I was first hurt.

    I have been active with the peer support program at the Shepherd Center in Atlanta for the last 20 years. Things at the hospital are different because everyone is dealing with this new life where your body doesn’t work anymore. Did you ever look at lower level paras and think “Gee I wish I had balance like them?”

    It is natural in rehab to look around at everyone else and compare what you have or don’t have. Having a para around can be handy. (pun intended) You just need to always ask if you can give them a hand. Just like the walkies should do with us all. Sometimes you need to struggle to learn to do stuff like picking something up off the floor. The best think you can ever do is say something positive and offer encouragement.

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