[paula_w]

I am very confused about the state of medical research and find that it provides little peace to one's life. In my present, somewhat isolated environment, I think I am letting it really get to me. I'm not sure how to neutralize the feelings of helplessness that arise out of discovering one situation after another, where people have been treated like lab animals and the patients are viewed as a collective mass of sub-humans.

The crusader role has taken its toll, and with my "natural" inclinaton toward guilt, I find myself in a pickle of self-loathing again....for being such a let down to family - yet resenting them for not understanding...for wanting to expose those who are crossing the lines in business and research - then wanting to slap my own hand for possibly hurting someone's reputation.

It seems that people of all ages are being treated without regard to their well-being - right down to the children with vaccines. Did our illness start with vaccines? So how do we prevent these deadly diseases? How do we right the so many wrongs? Why do I feel guilty when I try? It must be a learned, cultural thing.

Do we go after the deceivers with both barrels? Do they realize how indifferent they are about life? Have they convinced themselves that they are always correct? Do we just accept our illness and suffer? I seem to have lost my fighting spirit today....I just hope it is replaced with a better, stronger spirit.

not to be confused with whining,
paula

[Jaye]

Things are the way they are, dear Paula, because that's the way things are. There are Givers and there are Takers. You are a Giver. Others in your life are either Givers or they are Takers. Make a list of who's which in our families, for example, and we'll compare them, next time I call. I'll bet our lists match, because we come from similar cultures, where the work ethic was pounded into our heads, and taking care of others was so absolutely required for a woman that we seldom give it a thought as to whether we should do it or not. Some of the takers are Predators, and there are more of them today than ever in recent history. The Predators are very adept at manipulating feelings (see Harley's recent postings on abuse).

As for feeling like you shoulda woulda coulda--I have been told that it's tough, but I'm just not that powerful, to do all that needs to be done. Maybe you're just not that powerful, either. And how about the fact that you only get one lifetime?

My neuropsychologist has me reading a book on how to help others without losing your peace. I'll let you know.

Here's what I know for sure right now: that you are a wonderful person, and I'm grateful to you for all the work you've done for me and all PWPs. It was, is, enough.

Jaye

[indigogo]

Paula - don't let your advocacy get you down or affect your health. Easier said than done, I know .....

Hope your venting helps! But I think action will help more. Let's keep talking and thinking.

[rosebud]

I must have just missed you, I was just feeling the same way and went to all the same places you mention in your post. Bummer we didn't cross paths.

Yea, I agree with Jaye except for one thing...we are all both givers and takers at different times in our lives. We live on a rollercoaster...mentally, spiritually, physically and just about every other way you can name.

Our worst enemy is exhaustion. When we just plain old run out of fuel.

Here's the check list:

1. sleep
2. gratitude
3. be nice to self
4. be nice to others
5. forgive
6. stop the mind machine
7. play

If none of these work for you go buy a bottle of Southern Comfort, when you wake up with one doozey of a headache you'll be completely distracted from your current thinking. It is our thinking that drives us all to the edge

You got game girl!!! Don't be wasting it in a black hole.

[Fiona]

Hey Paula - because as you know I can get infuriated to the same level, but I think we do have to be careful not to let it get to us and to check out when you need to. We do what we can when we can. Anger can bec larifying, energizing, and enable one to take extraordinary action. But for me, needs to be balanced with love and positive thinking. Speaking the truth takes incredible courage, but a little can also go a long way, you are not alone in the battle, and even small acts can have great resonance with higher impact than perhaps we recognize. A true teacher rarely realizes how much people are actually being affected by their teaching, often doesn't see the results until much later...But every situation holds the seeds and potential of its opposite within it, which will inevitably bear fruit.

I, too, have felt really overwhelmed recently with the unfolding recognition of how deceptive much of the world suddenly seems to be, and feeling very untrusting of many ordinary aspects of our daily lives. I try to focus every day on imagining a world with solutions, with a transformed consciousness, a society that conducts itself in harmony with nature, that has the nourishment of every living thing as its mandate. I also to try to feel love and compassion for even what I consider the worst around me,and imagine them feeling truly happy, loved, and embraced...

And I try to let things encourage me - which they do - like Al Gore saying it WOULD be possible to transform all energy needs in this country to sound, sustainable sources in even a decade. Or I remember that the Berlin Wall came down effortlessly overnight finally, after those of us who lived in such great fear during the Cold War could not even imagine a society unpolarized by fear of Communism at that time. Or I think of a film like Amazing Grace, which I found to be a truly inspiring portrait of the British abolitionists and their accomplishments, or Stand Up and Deliver....stuff like that. Kung Fu Panda.

And also believing that a new consciousness is on the rise and will break through - it has to, because things cannot go on the way they are - and that it's going to take some eye-opening which will hurt as we do it. But I really believe a better world is coming and uh, Crystal Blue Persuasion, etc.... I think cultivation of a positive vision of society is definitely our most important task. SO maybe that means that for every hour of activism, one spends seven days or more in the garden, watching Singing in the Rain again, whatevah. The most important thing for warriors is that the vision of what they're fighting for is much larger and more real to them than what it's in the way.

thanks for all you do. And I have NEVER heard you whine...

[olsen]

Reflecting upon the feeling of futility expressed in these posts, I remembered there will be a solar eclipse August 1, 2008; no idea how that is predicted to impact us (or not, is the true, scientific answer) though reminded me of the book I am reading at present: "When the crocodile eats the Sun" by Peter Godwin. The title is a native's charming explanation of solar eclipses. the book is a memoir of growing up in Zimbabwe and a heart rendering account of this country's painful breakup (Mugabe is the present dictator of this country). The storyline also reveals the relationship between a son and an emotionally remote father. Would highly recommend the book.
I am reading the book to take my mind off the futility of what I do--so well articulated in Paula's post --the utter weariness and anxiety concerning the present state of medical therapy, medical research , and attempts to impact anything within the present system. I feel like a whiner, because I am just a caretaker. But recently feel what I do in reference to researching parkinson's, drugs, etc. is purely wasted effort.
I am hoping the weariness is due to the eclipse, and therefore short lived. It's getting my vote. Meanwhile, I will keep reading about crocodiles and suns. madelyn

[paula_w]

Madelyn,

Thanks for the interesting book recommendation and solar update. It's as good an excuse as any for weariness. And as caregiver, and I mean it, you have the hardest role. It takes patience, understanding and tolerance way beyond the normal call of duty as a spouse. I won't go on about it, just know that I mean it.

The slowness of research is frustrating, but the betrayal of public trust causes weariness.

thanks again to all for the support,
paula

[lou_lou]

I am living on prayers and praying for doors to open, for healing -
my source of life is not from the US government. or scientist...
God is great - I depend on the God of the Universe, I have faith in God ...
the beginning of mercies - encourages us to pray for the completion of them...
one day at a time -

they that sow in tears -shalll reap life everlasting.

[michael7733]

Paula, Paula, Paula,

Yes, as Jaye has stated, there are givers and there are takers in this life, but let us not confuse the taker wieth the receiver. You give of yourself in order to provide for anyone who would receive that which you offer. You do so with a humble and willing heart. You do not have to think about it. It just flows out of you. Unfortunately, all who receive what you have to offer do not do so with the proper attitude. They become parasitic rather than symbiotic.

The giver and receiver complement one another. The giver provides something that the receiver needs, while the receiver provides an outlet for the giver's need to give. This is a symbiotic relationship. Both giver and receiver bless and are blessed.

In the parasitic relationship, however, the receiver is a taker, and takes that which is not offered, or takes out of turn without regard to the feelings or rights of others. He is a thief, and although the giver still gives, the act of giving becomes a burden rather than a blessing.

The same parasitic relationship exists in which the giver demands that he is received and ignores the right of choice that belongs to the potential receiver.

Do not loathe yourself, Paula, for you are a blessing in all arenas. You give, because that is who you are. You are not demanding. You are humble and caring. You are a blessing.

I have found that most givers find it difficult to receive, but those who learn how become the best.

luv ya,

michael b.

[paula_w]

Michael,

I've been thinking about you - so glad and grateful for your post. I think about your research many a time when I read about new findings. Yesterday was one of those days when you wake up feeling useless to everyone [for those of us who do that ]- I need a Nathan fix [my grandson].

In the movie The Bucket List, two men take off and do things they wanted to do before they die. What I identified with most was the fact that one of them left his family to travel with this man he met in a hospital. The need to be with someone else who was going thru the same thing was that strong. That is similar to the conflicts in my life. This forum and friends I have made through it can make the difference between coping or crashing with this illness. That was a long way of saying thanks to the comments from Michael and Tena.

Michael please don't be so scarce...would love to hear from you more often.

paula