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Psychological mobility issue

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  • Psychological mobility issue

    Hi everyone,

    I'm Dave...haven't posted on this site in several years. Just wanted to know if someone out there shared my particular issue.

    I am a T-5 incomplete. I can walk with a cane, and unassisted indoors or spaces where I feel safe. But I have an intense physical reaction when it comes to open spaces, crossing streets, or the like. I have purchased a Winnie Walker as a practical aid so I don't have to deal with my fear. But I have this really strong aversion to open spaces. It's like my body freezes up--I liken it to standing on the edge of a cliff. Your mind tells you you're standing on solid ground, but your body recognizes the danger and your toes clench, your knees lock, and survival instinct kicks in. But it's weird--if I'm standing in a grassy area, or other soft space, I can walk around unassisted without a problem. It's just concrete. You know, curbs and parking lots. You'll often find me clinging to the edge of my car once I park in order to get to my trunk so I can get my walker out. I'm not agoraphobic--I'm not rationally afraid of crowds or open spaces. I guess when I'm alone and there's nothing to hold onto, my body pretends I'm walking on a tightrope and I just can't move an inch.

    Even with my cane, I can't cross a parking lot without someone being nearby. If there are parked cars close enough, I can usually do it without incident. I feel trapped--sometimes I'll crawl if there are no other options. For example, I remember one night not too long ago, I had to cross a street at 11 PM. No one was around and I didn't have my walker in the car. I crawled. Didn't care who saw me. Once I got to grass, I was able to stand up and be on my way.

    This problem is not normal...or is it? I know my loved ones have tried to understand what I am going through, but they don't get how I can be fine standing up one minute and then completely helpless the next. I have tried therapy--and my problem has been variously diagnosed as phobia and ptsd. It seems like a mind over matter issue, but to me it's like trying to fight against the basic instincts of the human body. I didn't have this problem before I became SCI. It's frustrating when I pull into a parking lot in the handicap space a couple of feet from the door and then the open space defeats me. If I don't have my walker, I'll stand around and wait for passersby to approach, and then ask them for assistance. And you know the things that people can say to a stranger, especially if they see he's only a few feet from the door, they'll say to themselves "Why does he need my help, is he going to attack me or steal from me?"

    I could use the walker more, but I feel good that I can use a cane. Sometimes when I walk in a room with a walker, people say, "Oh, what happened?" as in--you used to be on a cane, this walker must mean you're not as independent as you were before. It's not fun.

    I certainly am happy for the gains I've made, and am not asking for sympathy. I just want to know if anyone has any suggestions. This problem is a part of my life, and barring finding a solution, I just want to be assured I'm not the only SCI who's ever dealt with an obstacle like this. Thanks for reading, and I wish all of you well.

    "Leela, you look beautiful. Incidentally, my favorite artist is Picasso."

  • #2
    Pianodave - there is a gimpliment that is inbetween a walker and a cane.... FOREARM CRUTCHES. They rock. Sounds like you could 'go far' in the outdoors with them. There is far greater security and stability with forearm crutches then, say 2 canes, which is another another option.

    Hey - how old are you?
    Were you athletic before your spinal injury?
    Are you very overweight?

    What is the worst that can happen? You will fall. I fell on my face and knees three times (to the horror of my AB friends) on Saturday as I hiked 23 miles from the rim of the Grand Canyon to the river and back. There were sections that were three feet wide, cut into the sandstone and was a 1000 ft drop on the side. Crutches are secure, especially if you have the functional capability that you state with the ability to balance and step without HHAD (hand held assistive devices) a bit. It can be too much work to balance with a single cane. It is fatiguing and you look more gimpy than if you have 2 crutches (like Sidestix or Fetterman) that keep your posture better and your ambulatory speed goes up.

    Don't worry about people who are not gimped up. I get that all the time- " hey, you were only using a cane the other day and now I see you are using crutches, therefore you must be worsening). They see the tools of ambulation as a linear progression. I use a wheelchair at home, walk holding onto walls, counters, walk behind my w/c, use a 4 wheeled walker at home, cane to go into starbucks, one forearm crutch to go to my work cubicle and to go hiking, snowshoeing, beach walking , I use two forearm crutches.
    I was a climber prior to my injury so I always have loved exposure. I walk without any HHAD and look like Lurch from the adams family or frankenstein.
    I use all the gimpliments especially a wheelchair for recovery and getting around the house.
    I hope this helps you...


    • #3
      Thanks for the tips, arndog! I will look into lofstrands. I am 29, not an athlete, and a little bit overweight, but only 30 pounds or so for my frame. Lofstrands may be an option, but I would need something that anchors to the ground, something bottom-heavy. That's what makes me feel safe. If it's just two crutches, I don't know if it would resolve my issues, because it's really not a balance problem, per se.

      I'd like to know as well if my psychological issues are common. For me, personally, I want to know why I am feeling so insecure in open spaces and how to conquer the negative cues my body gives me. It's like I can't even imagine how ABs don't feel petrified every time they walk across a street. I don't understand why they aren't afraid of falling, or at the very least why they can't understand my psychological freezing-up, as it were. I really wish I could just tweak my brain to impart rational thought into my body, but I just don't know how.

      Hope I'm not rambling.

      "Leela, you look beautiful. Incidentally, my favorite artist is Picasso."


      • #4
        Pianodave, I could have written your original post myself, it so closely describes my situation. I'm 2.5 years from my injury and I get around quite well with hiking poles. I walk, unaided at home. But as soon as I get into open spaces or too far from a wall, I freeze up. I've struggled with this for a year now. I've considered consulting a sports psychologist to see if that would help. Hiking poles aren't a bad way to go but I understand the appeal of ditching them. Right now, I'm working myself away from the wall one inch at a time. As I write this, I have to admit that some of our fears are well-grounded in light of our SCI conditions. It's telling the difference between an irrational fear and one that should be taken seriously, that can be a grey area. If I come across anything helpful, I'll be sure to pass it on to you. Good luck!
        Last edited by truly; 03-22-2013, 12:07 AM. Reason: corrected weird sentence


        • #5
          It really is as much a physical issue. Our prorioception is screwy which causes use our equilibrium to be challenged and we actually are physically shaky. The walls and chairs actually provide stability when we actually lose our balance. I guess my point is that we are likely shaky everywhere but you don't notice it because we use the walls and chairs and counter tops to help us but don't really notice. I hope that made sense to you.

          I coach lacrosse and use a cane and a lacrosse stick. I would get fatigued if I didn't use these gimpliments but do have the balance to cruise around and not fall. I just fatigue very quickly and need the cane to rest and stabilize if I am on my feet for long periods like a lacrosse practice. I walk unaided at home and am good to go and getting better.

          I too am a huge proponent of the forearm crutches. I am an avid outdoorsman and use my crutches to access places I could never go without them. As Arndog says, stop sweating AB's and what they think. They are ignorant. I don't mean that in a bad way. They just have no clue and without a half hour or longer conversation will likely never understand your deficiencies.

          Assistive devices are just that; assistive. I use whatever I need to help me accomplish whatever goal I have that day. If I am going to the bathroom, I get up and go with no help. If I am going into the convenience store I use a cane. If I am going to for a 5 mile hike, I use crutches. Maybe one day i will ditch them all. But as long as they help me accomplish my goals I have no shame in using anything.