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.

Im with sallyc, I don't think I could have said it any better. this has all been very,very humbling, and although that has been painfull for me I know in my heart it has also produced a great amount of growth. thank you for the post!

I really love the way you put this Cricket I am also so very thankful for what this has taught me. And I could go on and on about how much we have ALL grown, but...

Cricket, how did you daughter respond to the showering of gifts? How old is she? I am just curious to know how it affected her...

"Ask for help?? Who??" I hear this, having been in much the same sort of predicament several times. And even when someone is available, there are rules of courtesy. Sometimes Lisa, having happened to come in my place after one of my prolonged struggles with something ridiculously simple, will ask in exasperation, "Why didn't you just call me?!" Because if I did, she'd be over here 24/7 -- or close enough. Everything in my world is a prolonged struggle. I like to reserve the calls for help for siuations that are outright impossible.

Chris

Lol, I was wondering what you guys were referring to when you kept saying "Ask for help?? Who??", and I am now guessing it is me, since I think I am the only one to say anything about help!

BUT, that is not at all the kind of help I was speaking of. When I said
"There really is help and resources out there that I believe we can truely benefit from", at the time we were speaking of "anger", so not sure how that got "lost in translation", but no worries. I was offering a friendly reminder to all, especially newbies, that there are so many resources to receive help with anger, depression, anxiety, etc... issues that come with having a chronic illness. Many find that weekly therapy, whether it be group or private, can be just what they need to try and overcome these things.

Anyway, just wanted to clarify

Jena:

My daughter was 5 at the time. She has Coffin-Lowry syndrome and her IQ is below the 1st percentile. She is verbal but lacks the cognitive skills to understand.

She was tickled with the gifts. Because she has no short term memory she didn't understand where they came from. I did take her to the mall and she said thank you to the volunteers who gave us Christmas.

Her mom (my second child) has CL too. Because she doesn't understand she was fair game for any guy that came along. Her mental challenges put her at the edge, so I was unable to get guardianship. She had five children, not one 'father' accepted responsibility. There is a 50/50 chance they would inherit her gene. Unfortunately all five did. We took Tasha when she was a few months old. The boys (all younger) were adopted or became Crown wards.

She is the reason I keep fighting for a quality of life. When my husband asked me to leave he predicted I would not be able to manage on my own with her. It has been a challenge but so far I have proven him wrong. She deserves to have a caregiver who can meet her emotional and physical needs and more. She will never read or write or even be able to live in a group home. Like this illness, she has given me much more than I can give her (although there are days I don't feel that way )

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Wow, that is really an inspiring story You must struggle so much, specially with you having to deal with all the sx's that come with having MS (I know you are not dx'ed yet, but doesn't quite matter when you FEEL like you do).

Your last statement is very understandable, and it only means that you are human! I wanted you to know that I admire your strength

(sorry, but I am confused as to who's daughter she is, as it sounds like you adopted her? and your daughter has CL too? So sorry, maybe my cognitive skills are out of whack today! lol)