I have both MC and Spina Biffida Occulta which has given rise to deformed feet, 'pes cavus' as they call it. For many years I battled against using a cane, call it young pride, but these days I find it too difficult and too dangerous to walk without one.

On the plus side using a cane does let people know that you have a mobility problem and I have found that it often inspires others to be a bit more considerate. Also, since using a cane I have not had any serious trips or falls, which did use to happen before.

Jim - Good points! Kelly - If not your friends, who can you open up too and get support from. You ought to make announcements at the rehearsal dinner, and then maybe at Thanksgiving or your birthday or something, saying "Look, this is me, and I feel very embarrassed and self-conscious, but I don't want to any more, so you all need to know my situation, and be OK with it!!" Then give them each a copy of my letter, Jan's information, and a couple of websites to peruse. Might open up an entire new situation for you!!
And get a really cool antique cane, or a custom made one - or make one yourself, covered in things you like - sea shells, stones, woodburned designs,beaded tassles......... a travelling art piece! lois

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Yesterday I was crossing a rather large street and didn't have a cane or any assistance. So, I tried to stay as calm as I could, but I was still taking baby steps across the street. This woman was crossing and turned to look at me and give me this really mean look. I couldn't help but get mad at her because it was unnecessary for her to be that way towards me. If I see someone who obviously has some physical impairment, I do my best not to even look at them, but maybe it's because I know what it feels like. The rest of the MC is bearable, but the unsteadiness is a real pain in the butt for me. I work in the heart of the city and while it's good, because I could maybe blend into a crowd, it's also bad because there's more instances where someone could bump into me and cause me to fall.

Rolma - There have been times (back when I walked a lot) when I was crossing a street, and my legs were either stiff or rubbery-feeling, and I was anxious (so of course it got worse), so I would walk with small, careful steps and would get honked at by drivers who wanted me to hurry up. Since I look perfectly healthy and normal, I presume they thought I was being a wise guy, or just day-dreaming my way across the street. They had no idea they were making it worse, and that I wasn't trying to be a wiseguy!! If I were a walker now, (and if I ever get to be one again) I would take a cane just to "clarify" my situation! Lois

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Lois,

If I don't have anything to assist me (or anyone), and I am feeling wobbly crossing the street, I 'accentuate' a limp just to avoid having them honk at me which would probably cause me to freeze up and fall over. I'm not necessarily in pain, but it helps them to realize that although you're not in a wheelchair, you have an ailment that is causing you distress and that they should have a little compassion for you. I highly recommend it to you all if you are having a hard time crossing the street and feel that you might freeze up at any given moment.

Hi Kelly
Because of the accident I have to have a cane outside my apartment. No one paid attention to my dark colored cane at all, just go a head and run me over. I also lost it all the time, dark cabinets with dark canes and no glasses.
My hand also hurt very bad, so I had an episode where my hand went limp and let go of the cane. I followed the cane down and lost some teeth.
Browsing on the internet I found pretty fashionable bright colored canes and I got a different type of handle not the 'J' handle, but the flat one and the pain went away. People pause to look at my cane and not run me over.
I also got a couple seat canes.
A lady deserves a pretty cane. They even have nice ones for men. Rosa
PS One mean lady slugged me in the back because I was in her way. I was to tired to lower myself to her level. I did think of a lot ways my cane could impede her progress.

Rolma and Lois,

I don't know if it is the ego in me or the fact that it has worked so well for me, but I feel like I need reiterate my belief in "letting people see how angry their glares make us" approach. I don't think it is the best solution, and I can certainly see the positive benefits of having a cane--not only for providing physical support, but also for alleviating the constant stares from people who think we are just being "wise guys." Getting angry and showing it does however get the message across to people loud and clear that you are not just messing around.

The line from the movie Network keeps running through my mind as I write this, "I mad as h*** and I'm not going to take it anymore." One of the things that makes me the angriest is when I am struggling to cross the street and someone beeps their horn or stares at me like I'm trying to be cute.

Since I am walking and that other person is in a car, I can't go up to that person and say, "Will you please quit glaring at me like you would a common criminal--I have a muscle disease and don't appreciate it? And since I can't do that, what I find to be the most affective is letting that person see just how angry they have made me by unfairly judging me.

I don't just look up, glare back and then look away. Instead I glare at them with full fury as I continue to cross the street. The result of this is instantaneous, and has been a fairly consistent result 99% of the time.

What happens? Immediately, that other person realizes that I am incredibly offended by their glares and that I am moving as fast as I can. I look at them until they look away, and then I continue to cross the street. Most times that person seems to calm down and wait for me. Most people except for a few jerks have reacted in this same manner.

Probably the best thing about this for me is that the adrenalin that is pumping through me because I am afraid of what that person is going to do, turns into righteous anger. I feel powerful, confident and that I have a way to protect myself.

Now, as I have said that I don't think this is the best method, because after doing this repeatedly for many years, I have become so confident that I have a way to communicate with strangers that I am not walking slow to be a jerk that I have simply learned to ignore the glares. Now, when I am moving slow, I don't pay attention to what other people are doing. I walk as stiff and as slow as is needed and hold my head up high. In some ways I actually feel sorry for those who are watching me move, because I know that they have limited experience in dealing with situations like this, and if we were to switch bodies at that moment, the fear and social pressure of dealing with MC would crush them.

Jim - I do understand your utter fury and frustration. Truly I do. People tend to rush to snap judgments, based upon nothing if they have no clues - it is, unfortunately, the way most people are.

I don't know about other places, but in CA, pedestrians always have the right of way (even if they are doing stupid things). But Drivers have become quite arrogant, and they are allowed to make right turns on red lights - thereby making pedestrian crossing a fairly hairy undertaking.

Having grown up in Manhattan, with insane cab drivers, and now living in a place where the conflicting driving habits of all 50 states, Mexico, the Philippines, South-East Asia, the Middle East, North Africa, Canada, India, South America, South Africa, Australia, Russia, and on and on all compete for supremacy at 85 MPH, I am pretty shocked at the rudeness, selfishness and plain bad manners most drivers exhibit daily. It seems their perdonal needs and schedules are paramount, and they resent people in wheelchairs, with walkers and seeing eye dogd, and young mothers with strollers. Very sad.

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Wouldn't it be fun if they made paintball canes? Then we could let them have it when they start honking or trying to intimidate us by driving threateningly close.

Rosa, I used to have this nightmare where I was walking along a sidewalk and suddenly got slammed to the pavement on my face. Sounds like your real-life nightmare...I can't even imagine how awful that must have been. Glad you're a survivor!

Jan

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Ah, Jan - Good idea.... maybe we could invent a special Super Soaker cane filled with diluted watercolors, and all carry them when we walk, and spray them at offending windshields! hee hee hee!!

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I used to feel those same sort of imbalance problems whenever I would walk in front of people. I often felt like I was going to faint or sometimes it almost felt like I was on drugs or something.

For me, it was nothing but plain old panick. I would get so terribly afraid that my heart would start racing and I could hear the blood pumping in my ears. I've found only two solutions to this problem and both of them are very effective--although I always feel a little bit of panic.

The first one is relaxing, which is easier said than done. The way I do this is by slowing down. I don't move a single muscle any faster than it feels comfortable moving it. I don't care how many people are behind me nor who is looking--it's just not worth it.

If I push further than where I feel like I can control my muscles then I think the panic comes on, because I am afraid I will fall down.

Relaxing is not the first thing I had to do to get over my panick. The first thing I had to do was get angry. Angry at everyone who ever scared me into worrying about what anyone thought and angry at anyone around me who I thought might be looking at me. Sometimes, you just have to stand up, get a little angry and look at everyone around you while you do that stiff akward walk. They'll look away and if they don't then let them know how much you disapprove of them staring at you.

Anger and Relaxation both accomplish the same thing--they give you the confidence to slow down and they both provide focus. The more focused I am at relaxing or glaring at someone--although I much prefer the former--the less I'm worrying about falling over or what everyone thinks about me.