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

Wow Chris, you've really made us stop and take a good look at ourselves and our whole value system. By value, I mean the way we see ourselves, self-worth. This miserable, horrible, sadistic, and just plain lousy disease gradually whittles away at our pride, confidence, worth -- whatever we chose to call it.

Like you Chris, I HATE HAVING TO DEPEND ON OTHERS! As after my nap said, growing up to be independent and not trusting others to do things for me was just the way to go. It became an integral part of my life -- I can sooo remember my father saying, "If you don't do it yourself, who will?" In most of life, that way worked, (except maybe my marriage, the ex said I was too independent......huh?) But that was how we were raised! Now all of a sudden due to nothing we knowingly did, we're saddled with this "thing" that continues to rob us of our independence/worth/pride.

Perhaps like some of you, living alone I have to continue to be as independent as possible. When the MS steps in and causes my bladder to work overtime, fatigue causes exhaustion just trying to take a few steps to turn off a light, etc., I feel I HAVE to do these things. Afterward a good cry is usually on the "agenda".

Is this pride? I don't know. It just seems to me our lives are taking a gradual downward spiral with one function after the other being taken away. Giving up just isn't in the cards for me, another type A personality, but in some areas we have no choice. This journey is a continual series of "adjustments" to our former selves. Whatever it's called, I HATE IT!!!

Good posts!

Having been raised with 'a it's better to give than receive' philosophy finding myself on the receiving end has been a continuous struggle. Once upon a time I was financial independent, had a great career and active family life. All that was gone in a few short months. Suddenly I was on disability and living below the poverty level with the same people I so glibbly donated to when I had a 'normal' life.

Pride took a serious blow when my family was chosen as the project for one of the malls at Christmas. My daughter was showered with gifts from the stores, we were given a gift certificate from a grocery store, a Christmas tree and anything else this happy group of volunteers could think of. Putting on a brave front and receiving their gifts was one of the hardest things I have ever had to do. It was humbling.

Life as I knew it is gone forever and this 'new' life is free of things and toys and debt. It is based on getting through a day at a time and when energy permits, helping others. It is free and happy and still a struggle for a Type A personality who used to be able to do it all.

Every soul must journey through it's valley. I guess for some of us that valley is now endless. Learning to appreciate the 'view' from down here is not quite the growth process I had planned for but I am thankful for the lessons learned.

For some reason, I don't have this resistance to asking for help. I have problems finding it, but I don't have problems asking for it.

I'm also an independent person, but I'm not sure why I don't feel it's bad to need a little help. I think I have a kind of community attitude, where everyone helps each other with whatever we may need, that the whole is greater than the sum of its parts, that we each have something unique to contribute and so by helping one another and building each other's strengths and offsetting the things we might lack a bit of, we all benefit. To me, it isn't so much an idea of being helpless as it is that EVERYONE needs a little help in some area and we should all trade back and forth what we are able to do to help one another.

So I just don't feel it's a sign of weakness to need others, and I don't mind asking people for help. I'm often frustrated because I don't get the help I need, but I don't consider it a matter of pride to need it at all. Not sure why I feel that way considering I am independent. I guess because I see how many things I can't do without the help of others, and I want to do those things. So it just makes sense that I rely on others for things that I can't do myself anymore. And yes, I do think too that other people benefit from helping as well so I guess I don't think of it as taking away from someone else.

It was interesting. I was on a train the other day. The guy right next to me fell asleep and began to snore. It made me realize how arbitrary our "societal" rules are sometimes. I mean, it was ok for him to snore. Ok, so the people around him might not be too amused but it was still in the acceptable realm, no one was going to wake him or make a rude comment to him about it.

But I wondered how we would have felt if his foible was being gassy. What if he would have expelled loud farts the entire time? Not smelly ones, just loud ones? Or loud repetitive burps? I don't think we would have been so forgiving and I think someone probably would have said something to him. Likewise, what if his stomach was growling incessantly? I also don't think we would have been so understanding, I think someone would have at least commented about it to him.

But for some reason, snoring in public didn't warrant a comment or a dirty look from anyone.

I wonder why that is, why some things are more acceptable than others even though none of them are within our control. I think sometimes our society 'standards' don't make a lot of sense.

This is so profound, Cricket...It brought tears to my eyes. Thank You.

And Thank You Chris (My Hero) for starting this thread. Very thought provoking and yet fulfiling.

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

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!

I'm not angry, over all, Jena, although I do have my moments.

I've lived with MS all of my adult life and am now 66. , so I have been through the emotional gambit...the fear, the anger, the acceptance and the happy moments too. I fell in love, married, and raised a family, all while dealing with MS.

Yes I've been angry at the extra burden I've been, how did Chris put it, FORCED to endure throughtout my life, but I've had a good life and inspite of MS, I still am enjoying it....mostly.

Anger is not always a bad thing, Jena, if used to make you stronger and find new ways to be loving and giving. Even Pride, if it means you are happy with your accomplishments, through the pain of MS.

Oh, I wasn't referring to you Sally, or anyone in particuliar for that matter. I just see so much of it. Yes, anger can definately be a good thing. However, carrying it around for years and letting it eat you up, is just not healthy, nor does it have to be that way. But I suppose that is for another thread anyway

I don't think a discussion of anger necessarily belongs in another thread -- I started this thread with the idea that MS "breaks down the walls of our pride," turning previous notions of pride upside down. Making us consider the idea that pride may be a wall which we use to keep other people from getting too close. For me, MS has had the same shaking-up effect on my ideas of anger.

I'm 55. When I was growing up, the idea that it was ok for boys to allow anger to manifest openly in fist fights, competitiveness, arguing, and dominance, and not ok, or even natural, for girls to do the same was part of the fabric of society. It was only when I was struggling with MS that I realized that not only was I feeling anger because my life was being stolen from me by a process that was a force of nature (and therefore not a matter of choice), but that anger was a perfectly rational response to such a situation. I had to find a way to keep my anger from poisoning my life and negatively impacting the lives of others. For me, that meant bringing my anger out in the open in a way that didn't hurt others, yet acknowledged my humanity. My way of doing this is by openly acknowledging my anger of my situation to myself and others; this is the only way I can keep it from "eating me alive." Yes, sometimes I have open outbursts of anger, shout that I hate what this **#!! disease is doing to me, weep with rage, write angry poetry. At times I allow others close enough to see my anger. On the other hand, my anger has not turned toxic, poisoning me with the anger turned within: depression. Expressing my anger in non-aggressive ways allows me to move on.

Anger is a normal human emotion. Anger at what MS is doing to me is a normal and even appropriate response. Only when I deny and repress it, force it within and keep it trapped there, does anger poison me and eventually scald the people I love.

Chris