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Old 05-09-2007, 11:48 AM #1
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Default Breaking down the walls of our pride

"One of the things this disease does for us is to break down the walls of our pride."

The above was said about cancer. I heard it in a TV program called Living With Cancer aired by Discovery on Sunday night. The quote resonated with me, and I thought, "Yes, that's what MS does." I had spent a couple of hours on the bathroom floor that morning, naked from the waist down, since the fall happened during a transfer from the toilet to the WC. I was wedged painfully between the WC, toilet, and tub, and I had cracked the back of my head on the rim of the tub besides, but I managed to reach my emergency pendant. My emergency system is one that calls several friends, not 911. The friend who responded this time is also a student of mine. I know she was horrified. I mean, as her horseback riding instructor her image of me is one of authority and effectiveness. Being greeted by a half naked woman stuck on the bathroom floor pretty well shouts "helpless and ineffective." It all worked out, though. She was able to get me out and back into my WC.

Breaking down the walls of our pride. Don't get me wrong. I'm a great fan of pride, and I have a lot of it. But pride is a wall, a barrier that can stand between me and the help I may need, whether that help is technological, financial, or the hands of friends and loved ones -- or even complete strangers. Breaking down that wall isn't always a bad thing. Accepting help with grace doesn't make me weak. It makes me strong. Using all the tools available to me in my environment doesn't make me ineffective. It makes me effective. And strong and effective are good things to be.

Chris

Last edited by Chris66; 05-09-2007 at 12:29 PM.
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Old 05-09-2007, 12:34 PM #2
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Oh My Chris, yes! MS does "Break down the wall of our pride"...the nasty little bastaad.

Especially for those of us who took a lot of joy and pride in our accomplishments. The type A personalities who think there is only one way to do something...Our way or the Wrong way.

All of a sudden, to be sitting naked on the bathroom floor, in need of help, but not really wanting anyone to see us like this, is the supreme injury to ones pride.

You are not alone, Chris. I do so understand.

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Old 05-09-2007, 02:16 PM #3
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Count me in too. Although, I don't need help walking, I can't really feel the bottom of my feet.

Last spring I was doing a course of IV solumedrol. Hadn't been able to sleep, took Two sleeping pills and decided (in my foggy state) that a shower was in order.

Wham, cracked my eyebrow bone on the bottom of the tub and couldn't move and I was being overwhelmed with water. My dear SO rushed upstairs. Note he has RSD and has been on crutches for 21 years. He helped me and lectured me about the joys of bathing not showering.

Showed up to infusion center next day with a very black eye. They sent me off to the emergency room, where I was repeatedly asked if anyone hurt me. No fracture, just a bruised ego, hip and eye.

It was my own pride that led to the accident. I sure hope that is a lesson learned on my part.
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Old 05-09-2007, 03:04 PM #4
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Timely, relevant and pertinent, Chris. I'm currently doing the one thing I love most, roadtripping alone. The reality that it's getting too hard for me is wrecking me. I can barely walk a few steps and my whole bod goes floppy and numb in any heat. Driving along the PA Turnpike today had me thinking about the wisdom of my adventures.

Naturally, everyone under the sun will tell me to travel with someone along, but that takes away a huge amount of what it is I like to do. I honestly would rather not go than to be at someone's mercy. Selfish? Stubborn? Boorish? I don't care, it's just how I'm wired.

I will admit though, I resisted help just now when checking into my room, no automatic lobby doors and I on my scooter with luggage in tow. I wish people weren't alway in such a hurry, I can do most everything if I just have the time.
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Old 05-10-2007, 02:20 AM #5
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I think we sometimes we have things affect our pride that really have no business being associated with it.

We teach children that bowel functions are private and not nice and we make them feel like they are functions that we need to be embarrassed about. Yet EVERYONE has them and we're the only species that feels the need to do them in "private". So we feel it impacts our pride when we can't control them as well as we should. Kids and bedwetting is another good example.

But this is an example of misplaced pride. We should never feel embarrassed or a lack of pride about something that is out of our control anyways. But for some reason, we take the "hits" to our pride when we can't do these things normally any more, as though somehow it was our fault.

We should reserve pride for things withIN our control, and not for things outside of it. We get embarrassed, ashamed, discouraged so much by things that just are not within our control at all. It's like we take any opportunity to take a hit to our self esteem or feelings of value.

Just think of how much better we'd feel if we didn't beat ourselves up for things completely out of our control, particularly the physical and cognitive weaknesses. We'd be a lot happier and accepting if we stopped judging these things as things we are embarrassed about or things that make us somehow inferior to other people.
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Old 05-10-2007, 04:59 AM #6
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I think we sometimes we have things affect our pride that really have no business being associated with it.

We teach children that bowel functions are private and not nice and we make them feel like they are functions that we need to be embarrassed about. Yet EVERYONE has them and we're the only species that feels the need to do them in "private". So we feel it impacts our pride when we can't control them as well as we should. Kids and bedwetting is another good example.

But this is an example of misplaced pride. We should never feel embarrassed or a lack of pride about something that is out of our control anyways. But for some reason, we take the "hits" to our pride when we can't do these things normally any more, as though somehow it was our fault.

We should reserve pride for things withIN our control, and not for things outside of it. We get embarrassed, ashamed, discouraged so much by things that just are not within our control at all. It's like we take any opportunity to take a hit to our self esteem or feelings of value.

Just think of how much better we'd feel if we didn't beat ourselves up for things completely out of our control, particularly the physical and cognitive weaknesses. We'd be a lot happier and accepting if we stopped judging these things as things we are embarrassed about or things that make us somehow inferior to other people.
Wow Wannabe, what a great post I just love it. Your analogy of BM's and bed-wetting was spot on. Funny, last night my son came in my bedroom in the middle of the night with wet jammies, and thought he was going to get in trouble like he did something bad (he is 4). I could only hug him tight and tell him that it happens to everyone!

And at the risk of scaring some away I will say that "Monkey suits" and "frogs" are ok in our home! lol. I honestly feel as you do that if you act as though these things are "shameful", then they will feel that way for life, IMHO

This subject is so important and should be spoken about more often, especially for the newly dx'ed, b/c it's not something you want to wait on "accepting" until you are in need!
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Old 05-12-2007, 12:05 AM #7
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Like just about every other kid in Western postindustrial society, I was brought up placing great value on independence and self-reliance. And control is the name of the game. For everyone. Control of the bladder and bowels is the first control we get as kids, and its desirability is reinforced by parents' respose to successful potty training. It's no wonder that an adult's loss of control is felt as the ultimate humiliation that, no matter how one thinks of it (i.e. up, down, sideways, and up the rear end), is never ok. Sorry, I will never get used to losing control of my bowels.

As far as dependence goes, let me just state up front that I hate it. Hate it. Having cleared that up, it has occured to me to wonder about the people who help me: who am I to say that helping me isn't a part of their process? So it's ok for me to help them, but not ok for them to help me? I came to the definite conclusion that I needed to take myself a little (ok, a lot) less seriously.

Chris
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Old 05-12-2007, 08:14 AM #8
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Like just about every other kid in Western postindustrial society, I was brought up placing great value on independence and self-reliance. And control is the name of the game. For everyone. Control of the bladder and bowels is the first control we get as kids, and its desirability is reinforced by parents' respose to successful potty training. It's no wonder that an adult's loss of control is felt as the ultimate humiliation that, no matter how one thinks of it (i.e. up, down, sideways, and up the rear end), is never ok. Sorry, I will never get used to losing control of my bowels.

As far as dependence goes, let me just state up front that I hate it. Hate it. Having cleared that up, it has occured to me to wonder about the people who help me: who am I to say that helping me isn't a part of their process? So it's ok for me to help them, but not ok for them to help me? I came to the definite conclusion that I needed to take myself a little (ok, a lot) less seriously.

Chris
All of this was so well said Chris, that last part especially. I am lucky enough to havee my entire family behind me unconditionally, no guilt, no expectations of getting better, etc... It was very hard at first to ask for continuous help, but I think that is human nature, and I do not have a sense of entitlement.

But, your right, maybe them helping me is their fate. (not sure if that is the right word), and as they do this for me, perhaps it is helping each of them grow in different ways. And as long as I do not sit here with an ungrateful attitude, and make sure I always let them know how grateful I AM, even though my family does not like it for me to keep apologizing or thanking them - it is amost insulting (but not really). I have always believed that there is a reason for everything. We are all growing from this in some way or another
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Old 05-12-2007, 12:33 PM #9
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Being forcibly ejected outside of societal norms, or consensus reality, is always an intensely uncomfortable experience. Forcible ejection is not the same thing as choice. For instance, when I left my marriage I left my son with my ex-husband, a choice I felt was best for all three of us. I chose work that satisfied my heart and soul but that did not have a large financial return. I chose not to advance in my work (at least in terms of monetary return) at the expense of the horses and people involved in my work. I chose the work that satisfied me over having a family. All of these involved choices that were direct collisions with American societal norms for a woman.

MS was not a choice, but an event of force. The person I am would never have chosen to surreder her financial and physical independence, and self-reliance. Any lesson I may have learned would never have been worth the cost of this suffering, frustration, spiritual pain, and the forcible surrendering of my essential self. Maybe there are lessons involved in all of this, maybe even worthwhile lessons, but when I die you'll find a big "SO WHAT?" carved on my heart. Or maybe "YEAH,YEAH,YEAH."

Chris
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Old 05-12-2007, 01:10 PM #10
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These are such great posts, and it seems as though a lot of us has had some very deep thoughts, realizations, etc...

However, I do think that we are able to live with this disease without such contempt for it, and for life itself. It is sad to hear how very angry and depressed some are There really is help and resources out there that I believe we can truely benefit from.

I am also at the declining point and trying to find that acceptance, and it is so hard. Although I have never felt that deep anger, I do have my pity parties!
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