ramblings about the S word

[paula_w]

A few members of the forum have been talking about spirituality and how it helps [ in all areas of life] them cope with this wretched condition. My faith has suffered from my years of advocacy and being on the internet. Advocacy has kept me very busy and completely distracted from the word that used to guide me quite a bit.

I have a need to return to that word, and have reflected on it a lot during a beautiful 3 weeks spent in the Pacific northwest. My brother lives in Seattle and I talked with Rosebud, spent time with Carey and another friend from Portland who was a GDNF trial participant. I met several times with Bill Bell, of the Northwest Parkinson Foundation and went to an excellent support group meeting - what smart, nice movers and shakers. I wonder if some are here - I know Dave A. was there.

It's hard not to reflect on things of faith when in the mountains walking back to a cirque in the woods with my new walking stick, a gift from Bill. The solitude and magnificent beauty brings out the most peaceful inner parts of our souls - which is what makes us different from a dog, or a horse.

PD and advocacy took me to great places and I met wonderful people. But in the end, I am an advocate in nature of the kind described by Susan B. Anthony in Carey's signature line. I tried playing by others' rules, looking the other way at half truths; and it's not me. Getting older and sicker magnifies the transparency and self serving in worldly goals and behaviors, rendering them meaningless.

I can't muster up the hatred that is being created for Sarah Palin. We are told to honor our leaders, and then we will be honored. I'm not responsible for their success or failure; I am responsible for how I am honored in the end.

What is my point? I don't really have one. I really like Carey's signature line, and recognize how much is wrong with the world because of people who are afraid and have priorities that will never fix the problems.

By the way, someone needs to start a campaign to make churches more accessible to the handicapped. They surely aren't. Do they consider us a distraction? bigger sinners cause we're sick? But I digress.

may as well ramble, nothing much else going on; take care of yourselves first,

paula

[lurkingforacure]

I read somewhere that the difference between being religious and being spiritual is that religious people fear hell, while spiritual people have already lived through it. I have a lot of thoughts about spirituality, especially with the PD card we have been dealt, as I am sure many here do. No need to get into all of those, I just wanted to share this, because for some reason I cannot explain, this distinction between religion and spirituality gives me comfort.

One thing PD does is force you to focus your energy and attention on those things that are most important to you, which unfortunately also exposes a great many problems in this world, of which we previously might have been blissfully unaware. I can't believe some of the things I used to think were important, now THAT was sick!

I may be going out on a limb posting on this, but if anyone gets comfort from this distinction, it's worth it. Sorry if anyone is offended.

[CTenaLouise]

going to church doesnt make you a christian anymore than standing in a garage makes you a car...

[stevem53]

Spirituality has helped me tremedously in accepting my everyday life as it is on its own terms..Spirituality has no boundaries or restictions..To me spirituality is about gaining truth, humility, understanding, and enlightenment through the trials and errors encountered in the journey of life..Leaning how to let go and to live in the moment, and knowing that everything is exactly as it is supposed to be at any given moment..That there is a supreme power that presides over my life that has a divine plan that I need not have to understand..I strive to be open minded and accepting of God's will, while I aim for progress rather than perfection

[lindylanka]

Without working on the spiritual side of being I do not think I would have weathered the crises in my life, though some of them did knock me back badly, sometimes for many years. The way I look at it the knocks we take are part of the path, and not separate from it. So walking is harder, both spiritually and in reality, but the path is still there, under any name, and always accessible if only I can see it. Which of course, sometimes I can't......

Thanks for raising this, Paula :hug:, our innate S-side is surely the source of ethical clarity, whether we are humanist, religious, or just tryers wishing to affect things in a positive way.........

lindy

[bandido1]

Paula: your eloquent thoughts triggered some profound replies. I often wish i could express myself as well as those who shared their views.Suffice to say whether it is expressed as religious, spiritual,humanist,altruistic or whatever---advocacy for matters that elevate the wellbeing of us all are laudable lifetime objectives. 0h by the way what happened to the group who wanted to be movers & shakers in pursiut of wider PD org. collaboration regarding funding for research?

[chasmo]

going to church doesnt make you a christian anymore than standing in a garage makes you a car...

and all this time i thought i was a Ferrari.............

[paula_w]

Bandido said, "0h by the way what happened to the group who wanted to be movers & shakers in pursiut of wider PD org. collaboration regarding funding for research?"

We're still here. I think everyone should be back from vacations and travels. It's probably time to give Doc John a PM about it.

I think the nature of these responses demonstrate understanding of what human nature has to offer in all of its facets and levels.

I'm answering Bandido - not trying to bring this thread to a conclusion. I love these responses - they are eloquent. Some day, thoughts may be all we have left....a scary thought indeed without defining our spirituality in some way.

paula

[rosebud]

I heard or read some where recently that the people who do well under the crunch of life altering crisis generally fall into one of these 3 groups...

1.) people who are committed to a 12 step program of some type

2.)People who work the land (farmers etc) and who understand the cycles and seasons of life.

3.) people who have a solid spiritual base and believe there is more than this life in the "Big Picture".

We all know life can be very challenging, and those challenges are often relative. For example, I have a friend who makes my life look like a stroll in the park. She has been poor as a church mouse most of her life, stricken with polio as a child, married a man who suffers from chronic depression, and later cancer. Two of her 4 children have been diagnosed with serious health issues: her daughter with juvenile arthritis, her son with the same chronic depression his father has. Andrea has been the main support of her family most of her married life. She struggled and got her masters in Early Childhood Education. You get the picture. It is humbling to be in her presence. She got up in church one day to tell us all about how blessed she was and thankful for the love she feels from God. She was walking past the bakery earlier that week, and could smell fresh donuts. She wanted one sooooo bad but had no money. She was wearing an old sweater she hadn't worn in some time, and feeling s bit cold she put her hands in her pockets and pulled the sweater tighter around her. She found a lump of paper in one pocket. She pulled it out and it was a rolled up $1. bill. So she bought herself a donut. She made a point of thanking God. Both directly and then shared the story with us. She is miles ahead of me in the spirituality department. But she is a tremendous inspiration to everyone who meets her. Most of us wouldn't think twice about the price of a single glazed donut. Just stop and be GRATEFUL for one minute each day and your life will be better. I know it.

Thanks for starting this thread Paula...you are a sweetheart. So sorry I couldn't make it down to see you.

Love to all of you who support me in my moments of insanity....and always have a kind word. You are appreciated!

[ol'cs]

I do believe-
That i'm going to die someday
I do believe
That PD wont bother me when I'm dead
I do believe
That anyone or anything can hurt me when I'm dead
I do believe
That i won't know it when I'm dead.
I hope
That somehow there is Something other than nothing

I'll never know
Until the time comes

So, i ask myself, while i'm alive, why are things the way they are? Why do people act the way they do? Why do people choose a bad path to a good path in life? Why do we let intrinsically trivial things upset us so much?

I know
That something created the Universe
I don't know
If whatever it was that created the Univese cares about it.
I wish
I knew the answers to all my questions

I'll be glad
If I get the chance to be able to get answers to all the questions
If not-
Then please- NO reincarnation, one life like this one is enough!!!:D

[Jaye]

Paula, you knew I wouldn't be able to resist. So I'll ramble a few thoughts for all to think ramblingly about.

There's a saying that if you want to have great faith, act as if you had great faith, and you will. Last I heard it takes about 30 years minimum.

A younger friend once suggested that if I didn't feel as if I had faith, I could be thankful I had other gifts of the Spirit, such as love and hospitality.

Proverbs 3:5-6 promotes a continuous awareness of the divine in everything a person does. The Hebrew word for "awareness" is also translated in different versions as "acknowledge" or "know", with a sense of familiarity. I have observed that this is one way to get into spirituality--to learn to still the Self and permit the Presence to make itself known. It can take 15 minutes or 15 years of practice to get to the point of occasional bubbling joy in the wake of one of these experiences. PD speeds up the process, maybe.

What some Christians call Contemplative or Centering Prayer or The Practice of the Presence of God, and the experience of Buddhist Meditation as taught to me by a Theravada monk seem to be related to each other. Silence is important, but it means silence of the mind. Thomas Keating is a good author for centering prayer.

The people writing on this thread know it, but I have to say that "Ask, and it will be given to you" generally refers to spiritual things more than to Mercedes Benzesl

Spiritual disciplines like the use of prayer beads or regular prayers read at certain hours from a book can be useful also in leaving the Self/Ego behind and attending to the Divine. I have books and books of this sort of thing, and have read also that many Evangelicals are turning to some of the ancient practices as a way, for one thing, of leaving the world behind for a while. If asked I would recommend the Spiritual Disciplines Handbook, written by a Methodist, I believe, with Biblical citations to back up each practice. (PM me if I can look up something for you.)

Looking at my life in a spiritual way and trying to live it from that point of view is the only thing that keeps me sane. It’s not a constant high by any stretch of the imagination, but it has lifted me out of a few ditches.

The trouble with church is that people use it for other things, such as a tax-free country club, or a place to get validated for perfectionism. For about the last three decades I’ve been able to find a balance inside of religion, especially when I think about the people who are there for the best reasons. Since I can’t really judge the inner workings of their hearts, I gotta love’em This can be very hard to remember to do. I think the inaccessibility is because of budget priorities.

I’ve rambled enough. So there is my two crumbs' worth for tonight.

Jaye

[dbiker2]

stevem53 wrote: ...That there is a supreme power that presides over my life that has a divine plan that I need not have to understand...

One day several years ago my Pastor was at my house and I asked him...'why me'? "why do I have Parkinsons, why did God allow this to happen'?

He told me to read Job, and if I didnt get anything then read it again...and keep reading it until I did. After reading it about 7 times I finally got something....God didnt have to tell me why and even if he did I probably wouldnt understand it. At first I thought...thats it...thats the expalnation I get...after thinking about it for a couple of days, I accepted it...His Grace is sufficient....

[harley]

Untying the Gag Order

Can I slide away, ride away, hide, un-decide away
Leaving no clue of my new existence
Undoing, ungluing, excluding the protruding
zit that has become my bane and resistance
My surly, whirly, whacked out behavior
is not hue nor shadow of a once flattering silhouette
Beguiled, betrayed, taken out, my bed unmade
creates thoughts never known to throw out the sheets wet.
The unseen, unclean, scared un-repaired
joke of a body is as foreign as desert
I try to absorb, reward, retard, then discard
This displacement of creation I have to inherit
To fantasize, visualize, scrutinize and penalize
Gives the ball in motion too much room to roll
When it comes down, it hits ground and rebounds
and freshens its mark with a much stronger toll
I freeze, gaze, do a 360 and hurl
To be masochistic is not my cup of tea
My eyes have found skies that He sanctifies
His glory is all I need to find me.

©Laura J Dean




In His light, where do you stand?
in the dark, where do you go?
days are going by and i have many plans
I have a seed to plant and watch grow.

Time is rare to capture and hold
we are given a choice, we must chose to be bold
second winds seem far in-between
the moving trains trying to make off with our dreams

but look at me, see who i am
look at me and His light in my eyes
humility is a precious diamond
and i have earned it, and i wear no disguise

i know where i am going
my feet really do know this road
it is my destiny
and all i need to see

the road runs to the sky
i dont know how high the climb
but i look to you to see
are you ready to accompany me?


laura j dean

[olsen]

this posting, and this group of individuals on neurotalk reminds me of the last lines of Tennyson's Poem "Ulysses":

"...Tho' much is taken, much abides; and tho' We are not now that strength which in old days Moved earth and heaven, that which we are, we are; One equal temper of heroic hearts, Made weak by time and fate, but strong in will To strive, to seek, to find, and not to yield."

http://www.metalvortex.com/poems/ulysses-.htm

[lurkingforacure]

For those inclined, there is an excellent and in-depth discussion of the Book of Job in the book "Why Bad Things Happen to Good People". This book is for anyone who has suffered, or has/had a loved one suffer, regardless of religion preference or affiliation. I first read it when a beloved friend, probably one of the best people to ever inhabit this planet, died after a lengthy and painful battle with cancer. A complete tragedy which left me stunned and no longer able to see the world as I used to.

The rabbi who wrote this book lost his son to the disease where you age incredibly rapidly. His son was diagnosed at the age of two and lived until he was 11 or 12. The book is about the father's coming to terms with his son's pending death, and making peace after the fact. It is very well written, and was very helpful to me in finding my way after my friend's death. In fact, I think of this book every time I get knocked back another peg, which seems to be happening more frequently the older I get!

[Shake 'Em Up]

Dear Paula-
As life becomes more difficult, I find I have to dig deeper into my inner resources to find those grains of hope. The other morning I realized that my cat Sunny was sharing his way with me: rest, breathe deeply, unclench my fists, let my heart sing, and allow myself to feel the beauty in every moment.
I have a long way to go to get it, but I'm working on it. Aren't we all.
Cyndy

[rosebud]

when I read Dave's post about reading the book of Job, I too imediatley thought of the book "When Bad things Happen to Good People" I believe the author is Harold Kusher..or close to that. It was written several years ago. Someone is sure to have it. or it will be at your library. I too reccommend it.

I have never asked "why me"...It just seemed to me that if you live on this planet you are fair game. Somewhere in my reading I came across this quote

"dearly beloved:
God will tear at your very heartstrings ...and if you cannot bear it you will not be fit for the kingdom of heaven."

pretty harsh words, but.... I'm sure that quote will set off a few lightening strikes. But consider the word "fit". Think more in terms of "fitness".
Fitness is a state of wellbeing that makes us able to run the race, or climb a mountain or whatever physical challange we meet. Wouldn't it make sense that we need to be spiritually fit as well. I consider my PD an exercise in spiritual fitness. Maybe we are the elite. For those of you who are "christian" I have another quote I like: "Jesus' brief stumbling while carrying the cross is a reminder as to how close to the very edge of our strength God stretches us at times." N.A. Maxwell

We all view the world through the prism of our own experience, that I know for sure. But the question of fitness for the kingdom of heaven does not bother me, or offend me in any way because I believe we do have to be strengthened/challanged etc, and that comes from rising to met our challenges or trials or whatever you want to call them. The laws that govern the physical world also have their counterparts in the spiritual. Gold is purified by burning off the dross, diamonds are chunks of coal put under extreme pressure, steel is forged in a very hot fire. All of the most precious and strong things of this earth speak out to us that we too are being refined.

The book of Job is an allegory I believe. In the end you'll note that all is restored to him and more. So run the race that is set before us, and be grateful we have each other to hold our hands.

I'll get off my soapbox now. :D

Gotta go face my challenges... Love ya all. You keep me strong!

[paula_w]

One of the amazing things about this thread, and i emphasize only one of them, is the ability of the posters to weed out the 'do nots' that so many take for spirituality and focus on its directives for living to the fullest no matter what the condition of our lives. As my friend April recently shared with me ....she said she repaired a relationship by looking at what she needed to change about herself. In doing so through group support with a spiritual background, she quickly learned that there are others out there - always - who have it much worse.

I attended Shake Rattle and Roll this weekend and for the second time [maybe more?] they released butterflies as a symbolic act of hope. A friend who lost her husband recently attended to give him a memorial. Before the butterfly release, she spoke, and a song was sung about wind beneath my wings. An adult butterfly, not one to be released , flew to the stage and landed right beside the singer. It gently flapped it's wings throughout the entire song. It was incredible, a sight I will never forget. As I sat beside my friend, both of us in tears, she shared a revelation that someone had told her her husband would come back with wings.

You can't make this kind of stuff up. Too many witnesses. You can see the butterfly at the end of this video and see it a little as the girl sings. But chronologically, it's modified - she sang before any were released and this was a free butterfly that landed there. Amazing.

http://www.pjstar.com/multimedia?vid_id=xmY3cEgrtRA

life was precious at that moment,
paula

[pegleg]

Paula
You will have to chuckle at this, but I read your post because I thought it was about stem cells (knowing that you had been with Joan Snyder’s event this past weekend). But I am so glad that I did read this thread. I already knew that Paula, Tena, Charlie, and Rosebud were “believers” (speaking in Christian terminology), and your responses were profound. Steve, Bandido, and Lindylanka – your replies tell me where you stand in thinking, also. But ol’cs surprised me - your writing blew me away! (BTW – Rosebud – you look great in that photo!:))

I also know that this forum doesn’t look favorably on rather heated debates concerning politics or religion, but here we are sort of talking about both. My point for responding is twofold (maybe three):
1) there is a difference between religion and spirituality
2) if our spirituality helps us in coping with this malady we have been handed, then it shoud definitely be allowed to be discussed – not debated, but discussed.
3) (I knew there would be three!) Nobody – even the dingiest blonde (and I say that totally in jest since I am one) should have to take the shots that have been fired at Palin – that’s what some religions preach – treat others the way you want to be treated.

Responding briefly on each item above, I offer my words in the hope that someone else will gain help and hope from them.
1) Religion is your set of “rules” – your church’s beliefs and practices – and what you are expected to do in or with your life. Spirituality, on the other hand, is your own personal journey in finding your purpose in life. I thought the analogy from Helium ( www.helium.com ) was a good one:
The search for spiritual understanding is like drinking from a vast lake. Sat on the lakeside the searcher is quenching his thirst for knowledge and understanding by drinking from the clear cool waters. Although the drinker may seem alone in his quest, they are not, its just that the lake is so vast that he may not be able to see the other people following the same path but they are there known the less. This personal act of drinking at the waters is akin to spirituality.
Religion is a different matter. Religion in this analogy is merely the cup we chose to drink from the lake. The cups come in many shapes, colours and designs, all down to personal taste, some cups are handed out job lot and have names such as Christianity, Hinduism or Islam others are more personal but it has to be remembered that these cups are only a tool to a higher purpose. One could also argue that you don't need a cup at all and how much more refreshing it would be just to dive head first into the lake and immerse yourself in its healing waters.
2) What I say that can add to what I already said. If we interact with what we believe is a Supreme Being, and it helps us cope, then by all means share what it has done for you. Paula, I, too, have suffered with less than fulfilling spirituality (gained by being in the Word daily). Advocacy has pushed its way to my front burner when I know that isn’t right for me. Maybe that’s what drew me to your post.

3) Finally, I am not a happy camper about the many ugly, things being thrown Palin’s way . Yes, she may be “inexperienced” in the ways of Washington, but not in life. It is feedback to me when I read some of the hurtful, purely unfounded jabs being made at her for being a conservative woman. It tells me that much of our population not practicing any religion.

I have said more than I intended, but would be glad to further discuss how my search for purpose has been my sustainer and will continue to be. Thanks for posting this, Paula; it made me refocus

[Max19BC]

I’m not good with words so please bear with me. The following is my own personal beliefs and not meant to offend anyone. I’ve never cared much for any types of structured religion. I’ve always believed that religion was created by man to control man and to make up answer for the unknown. Spirituality can be very individualistic and has no restrictions or boundaries. Having pd sure challenges your beliefs. We quickly realize how fragile we are and how precious the remaining time left we have. We can no longer continue our old way of life. The once opened door to our future has been slammed on our face. Suddenly our whole life changed. We start searching for answers, take better care of our selves, helping others, bury ourselves in grief (why me), get angry at the world, get involved, etc. etc. The one thing, I believe, is that sooner or later we all face our spirituality / religion much more seriously. We’ll look reasons why, pray, comfort, options, etc. One thing for sure, we’ll definitely have a lot more free time to think about it.
For whatever reason, I personally believe situations arise in our lives (including pd) for us to learn from. It’s how we respond that seems to matter. Time slips away so quickly, every day is precious. I have the following phrases taped on my computer and I read them every day (sources unknown, I might of gotten some of them here). Its not much but it helps me start the day:

Let go of things I cannot control.
I am not judgmental.
I forgive and release the past.
Every day in every way I am getting stronger.
I’ am healthy, vital and strong.
Love is everywhere, I am loving and lovable.
The JOY I experience this day flows forth from my outlook on life and will not be hampered by what is happening around me: by what has happened in the past or by what might happen in the future. I choose to see the beauty of my life and the promise of my good to come. For I am a chid of the living spirit and my potential for joy cannot be bound.
Any moment in time my heart connects with the Creator’s infinite love.
And my favorite from Louise L. Hay says it all: “In the infinity of life where I am, all is perfect, whole, and complete. I believe in a power far greater than I am that flows through me every moment of every day. I open myself to the wisdom within, knowing that there is only One Intelligence in this Universe. Out of this One Intelligence comes all the answers, all the solution, all the healing, all the new creations. I trust this Power and Intelligence, knowing that whatever I need to know is revealed to me in the right time, space, and sequence. All is well in my world.”

Enjoy Life.
Max

[pegleg]

I have been "blessed" with low back pain for the last 6 months(no rupture, just buldging disc- but more like dystonia) . It plays havoc on being able to sit at the computer and type. So what I do is read a thread, then type my reply in a Word document, then cut & paste it into the forum reply. (confused yet? lol)

That's what I did last evening. I didn't even realize there was a page 2 to this thread. So this morning I want to respond to those replies I missed. I know harley - whom I finally met in person t his summer w hen she visited Tennessee, so all I can say is God gave her a giift for writing poetry - glad to see her use and share it with others. dbiker - I know you used to post herhe a long time ago. I remember how active you were with your church - designing graphics and newsletters. olsen - we've exchanged thoughts before, also - and I, too, like Tennyson. I don't know lurkingforacure of Shake em up - but I relate with your replies. Lurking, I have that book and have recommended it to many. I would also suggest Lee Strobel's The Case for Faith - excellent answers to why bad things happen to good people. Max - loved what you added at the time of this reply. I especially like this: "The JOY I experience this day flows forth from my outlook on life and will not be hampered by what is happening around me: by what has happened in the past or by what might happen in the future. I choose to see the beauty of my life and the promise of my good to come."

Finally, I want to respond to Jaye. Jaye and I go way back - we met at a conference (or they called it a retreat) by PLWP held in KY. It was the first time many of us had met face-to-face. Jaye was and obviously remains strong in her faith. The Bible says in the boook of James that "faith without works is dead." That doesn't mean that you "earn" your way to the great beyond by doing good deeds; it simply means it you claim to have faith but do nothing to show it, it's dead faith. (BTW James was the brother of Jesus). Jaye is one of the best examples of faith in action that I have witnessed. (Well, maybe she runs second to Mother Theresa - lol). She always is doing things for others - not just little things either. I recall her hand-crocheting prayer scarves (or it may have been knitting - showing my inexerience) for those in need at her church. What a tangible profession of faith that probably touched more lives than just the recipient! And the list goes on - she has been my prayer partner for years.

I don't get to read here often, but so love to interact with those who do frequent here. Yes, I have even let my time (or lack of) be dictated by my advocacy activities. Paula, it would do us all good to visit somewhere beautiful and soak in the majesty of knowing someone else is in control- and that "someone" has ALL the answers.

This is what I see as the theme that runs through this post: we have Parkinson's - it could be worse, but it could defiinitely be better, but right now there is no cure. What do we do about that? So places like NeuroTalk, PatientsLikeMe, and all of the Parkinson's groups exist for one reason - to share with each other about what works for us to help improve our quality of life. And as diverse as we all may seem , we can appreciate, respeck, and hold dear the friendships we have made in the course of this illness. I, too, believe it happened for a reason - and thatg reason was not as punishhment for something we did or didnt do.

Sorry this was so long. Hugs and best wishes, thoughts and prayers to you all!

Peg