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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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CFS turned my spiritual life, and my church world, upside down

JustJack

put on yer dancin' shoes
Messages
53
Location
Sacramento CA
Can I echo and join in...

Hi you beautiful women, suffering everyday with the same journey only different "fill in's" for what we did, who we were, and what we believed about the world and life.

I was a theatre producer/director, actor, teacher and choreographer. I know that I can never have that again, but working that through is deeply difficult. I wake up everyday and think, I am not really sick, how could I be this sick, all the time, for so long, that it never stops and lets you "play the game of life."

I feel like I pretend and show a good face to others, I mean, what can you really say, how can you make someone understand that has not either gone through this themselves, or family or a close friend, or lived, sequestered for any reason, for more than 6 mo to a year minimum at a time.

Jody, you said that you poked your head back in and saw that the landscape changed, they had moved on, you were absent for too long. That's the problem, our continued absence. Whatever you started while you were feeling well enough got demolished the minute you crashed and there was not a chance of putting the pieces together again.

Nothing can ever change what has happened to those of us that suffer from moderate to severe ME/CFS. I haven't been here long, and I am no expert, I am just a woman in her 50's who has been full blown ME/CFS since 1997 and now completely housebound for the last two years. And, I loved my busy, crazy, non-linear life. Now I plan for which room to clean in my house and when (since I have big OI and am wheelchair bound mostly), going shopping/doctors on Thursdays with my mother-in law and cooking dinners for my husband, who thank god loves me no matter what, and not turning into a complete vegetable.

The women here in our age range speak almost like one. We chronicle the ravages from this illness with our collective stories. I can only pray that someday we are redeemed, validated and that studies on us will help stop this DD in its tracks.

Thank you for allowing me to join your ranks and feel your spirits through this cyber world we have together.

Hopefilled and Happy New Year

Much love,
Jackie in Sacramento
 

JustJack

put on yer dancin' shoes
Messages
53
Location
Sacramento CA
Oh, I forgot...

Thanks again for everything you are saying about spirit and God.

With so much time, in the solitude, I listen and hear whispers and sense a flow to the world through us, around us and beyond us.

If there is a blessing from ME/CFS, perhaps it is time and permission to listen in the quiet for the truth. It is there.

Wishes for 2010:cool:
Jackie in Sacramento
 

spit

Senior Member
Messages
129
And, I loved my busy, crazy, non-linear life.

This hits what I miss most, honestly. I was never what you'd call "type A", I actually tend toward mellower than most people can imagine, but I really took pride and comfort in the chaos around me. Liked roommates because they made my world messier in ways that forced me to think differently. Enjoyed that I had absolutely no solid plan or clear structure, and could still be confident that whatever came my way would be interesting to me and provide insight into things I'd never thought to think before.

It's hard to have to think ahead about what I can and cannot handle, and find so much need to say no to things I'd love to experience. I'd never had to do that. I'm actually only 30, I feel much older most of the time. As in, really old. Older than dirt.

But what the hell. I like dirt. It smells good in the rain.

Sacto is my home too, and I've been enjoying the drizzly weather and the crows at dusk; that's still good stuff. Crows, by the way, were badly hit here by west nile virus in the last few years -- their population here is only now really recovering, and while that doesn't mean much of anything in terms of connection or relation to me specifically, it makes me that much happier to hear them in the evening, stronger than they were a year ago.

Happy near year.
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
Though I was raised in a family of practicing Catholics, we never talked about God or the Bible in my house. Instead, my parents modeled being "Christian". In my understanding, being a Christian meant that they drove the sick to church, they brought food to those who couldn't cook, did shopping and errands for those who were unable and then - they prayed for them.

My grandmother was that model. During WWII, there were some POWs forced to repair the railway line near her home. In spite of the fact that she and her family spent night after night hiding under the stairs while Nazi bombers dropped their payload, she once told me how she and her friends used to send cakes for the German prisoners - and this when they lived on miniscule rations. I asked her why. "Well, they were just bits of kids," she said, sure that they wanted no more of this war than she did.

We had a unique dinner ritual. Before we ate, we said grace, then offered prayers for those that we knew who were sick. It was a running list of names that we all knew by heart. When people got well (or died) they were taken off the list and as other people in our lives got sick, they were added to the list.

That same grandmother used to sit in the bathtub every night, praying out loud for every single person she could think of, by name. We used to sit on the landing and listen to her. Through her, we knew who was sick, who had died, who had financial trouble, and we children would then take these causes to Jesus in our night prayers.

I would like to have a prayer list here. There are some members of our community who are very sick - those who would have qualified for my family's dinner list.

I had that same thought yesterday.

My church was very different from what I have seen recounted so far. When I became sick, the church came to me in the form of visitors, and my husband was immediately signed up as a Eucharistic Minister - which meant that he could bring me Holy Communion whenever I couldn't attend Mass. When we moved over here, I was immediately placed on the sick list and when I couldn't attend, someone came to bring me Communion.

After four years of illness, when I had been on the Florinef trial and was now reduced to skin and bone, we attended a Mass for healing. Not my first one, I hasten to add. I went to bed for three days beforehand, so I would be able to make it, then on the day itself, spent ages applying make-up. Then I refused the wheelchair, walking in on my husband's arm. I wanted no charismatic priest picking on me because I was in a chair! But he picked on me anyway. :D Twice. That night, I soared. I ran around the church, no pain, no fatigue, nothing.

Okay, you may be saying, why am I here? Well, I joined a healing ministry under the wing of our archdiocese but after several months of working within it, I realised that I had forgotten what it was like to be chronically sick and I prayed. I asked for some of it back because I did not want to forget what people go through, day in and day out. That was thirteen years ago and since then I have had my share of problems, but instead of operating at less than 10% I now normally operate at around 80% except on rare occasions - like now - when I get dipped back in for a jolly good reminder. And it was that reminder that brought me here.

I am no longer in ministry because the wonderful nun who used to run it has long-since retired and it seems to have been handed over to people with "methods" and such, instead of relying on God's good grace and perfect will, but I pray. And - thank God - I am often reminded that, like Jesus, we are not called to just look at the sick, but to walk the journey with sick people. So, people might justifiably accuse me today of "not wanting to get well," to which my answer is, "I'd love to, but not until we can all have that hope - together." Until then, I'm at God's mercy. Laugh if you want to, folks, but that's who I am.
 

Countrygirl

Senior Member
Messages
5,427
Location
UK
More please, Martlet

That night, I soared. I ran around the church, no pain, no fatigue, nothing.
:D


Hi Martlet,

I've heard of this happening to a number of people with M.E. :) If it is not too personal and private, I,for one, would love to know more about your story. Were you immediately well? Was it a partial or complete healing at this time?

Have you read Jen Rees Larcombe's book, Unexpected Healing where she describes her healing from severe M.E?



Laugh if you want to, folks, but that's who I am.[/

And that is great. Thank you for sharing your encouraging story, Martlet.

Happy New Year.
 
K

_Kim_

Guest
My grandmother was that model. During WWII, there were some POWs forced to repair the railway line near her home. In spite of the fact that she and her family spent night after night hiding under the stairs while Nazi bombers dropped their payload, she once told me how she and her friends used to send cakes for the German prisoners - and this when they lived on miniscule rations. I asked her why. "Well, they were just bits of kids," she said, sure that they wanted no more of this war than she did.

That's what I'm talking about. Not just 'love thy enemy' - bake them cake. We are all one. We are all one.

After four years of illness, when I had been on the Florinef trial and was now reduced to skin and bone, we attended a Mass for healing. Not my first one, I hasten to add. I went to bed for three days beforehand, so I would be able to make it, then on the day itself, spent ages applying make-up. Then I refused the wheelchair, walking in on my husband's arm. I wanted no charismatic priest picking on me because I was in a chair! But he picked on me anyway. :D Twice. That night, I soared. I ran around the church, no pain, no fatigue, nothing.

Okay, you may be saying, why am I here? Well, I joined a healing ministry under the wing of our archdiocese but after several months of working within it, I realised that I had forgotten what it was like to be chronically sick and I prayed. I asked for some of it back because I did not want to forget what people go through, day in and day out. That was thirteen years ago and since then I have had my share of problems, but instead of operating at less than 10% I now normally operate at around 80% except on rare occasions - like now - when I get dipped back in for a jolly good reminder. And it was that reminder that brought me here.

I don't know if I would choose to be where I am, but I do look for the grace to do good now that I am here. I get it, Martlet. I really get it.

Kim, by your own words you are already beyond the 'names' without which this world would not exist, religion and the reality of spirit are not the same, religions are as the moon is to the sun, a pale reflection. You need not be concerned with spirit, spirit is concerned with you, Christians would say you are called, I beleive 'whispers', which belongs to no one but you says it better than any other name I have heard.

Dear Holmsey, you have given me more words for my way of being than I could have hoped for. I never talk about this stuff and always stay clear of religious discussions. Maybe I do have something to add to the conversation after all?

'It is not the power to know but the strength to do which I seek'

A-ho, Amen, blessed be!!

Underlying this reality is a flow, a river of energy that is simultaneously absolute peace and unconditional love. It is omnipresent and can be accessed in an instant.

And it never is any other way, right. We forget about the flow and when we remember - voila - there it is! Everywhere. All around us and within us.

In order to dislike, object or hate we must first exert the energy to construct the why and the wherefore of our objections, and even more in the action of carrying them forward, yet if but for a single breath we let go, we and they alike are returned to that peace, to that flow. This IS the natural state of being, all else, all else, is illusion.

This is why I cannot join in discussions here about the 'villains' of CFS - the Reeves, the Wesselys - it is not for me to judge these men, only to forgive them and let go. Bake them cake.

Religions are not called, spirit cannot speak through a church or a mosque, it speaks through people and it never seeks to condemn or control. If there is hate in it, it is of man, test everything in your heart, the heart always knows, but then I don't need to tell you that, someone (or thing) has already done that.

You've brought such a smile to my face, and that's not good, I'm still at work.

All the best.

Aaaah, Holmsey...you brought a tear to my eye. I'm so glad that you decided to give us another chance. We would have missed getting to know this you - this beautiful you.

Kim, what amazing experiences you've had. I would imagine that you get a lot of support from your family. Do you?

I don't consider my experiences amazing - rather simple and ordinary actually. I do feel blessed that I got a good moral compass from watching my parents. It would have been impossible to figure that out on my own.

My family is very understanding of my illness. For Christmas, they chipped in and got me a memory foam mattress topper for my bed. They heard that I'd been spending a lot of time there and wanted me to be comfortable.

I am amazed by your family. WOW! Just speechless really... The world would be a completely different place if more kids were raised like that.

I'm just going to take it in.

I'm going to call my mom and thank her after I type this. I honestly never thought that my family was all that special - it just was the way of life.

The world would have more Kims in it!

That would be fantastic, wouldn't it.

It would.

Oh dear Koan. Don't know what to say except we can have more people like me and my family. I tell people - feeling crappy? Try doing something nice for someone in need. You see, it benefits me too. If everyone knew how much grace I get from living this way, they'd all be baking cake for the enemy soldiers.

Ditto. Amazing. And are they wonderfully supportive toward you through your illness? (*envious, and embarrassed for being envious*)

Yes, they are supportive, especially my mother. When I told her that I was afraid that I wouldn't be able to take care of myself, she told me that she would take care of me. I could move in with her. In fact, she'd love that.

So many really wonderful posts. It's very heartening to see such beauty come out of such suffering.

Kim, I think this is a lovely idea (the prayer list). Would we get to add our own names to the list as well as offering prayers for others? Count me in for both.

Absolutely!! At least the way my family did it. If one of us was sick, we got put on the list. Kind of like singing happy birthday when it's your party.

I will start a prayer thread - that is, after I call my mom and tell her what a great mother she was.

Oh, yeah, forgot to say - me too.

We could even have a (weekly?) prayer/meditation time together.

I'll start the thread, then we can choose a day/time to pray and meditate together. I love this idea so much that perhaps we could start tomorrow, the first day of the new year. Start with prayer and peace.

Me three. We could sync up according to our time zones and tune in together!
:cool::cool::cool::cool::cool::cool: I'm excited now!

Yes!! this is good!!

Thanks again for everything you are saying about spirit and God.

With so much time, in the solitude, I listen and hear whispers and sense a flow to the world through us, around us and beyond us.

If there is a blessing from ME/CFS, perhaps it is time and permission to listen in the quiet for the truth. It is there.

Wishes for 2010:cool:
Jackie in Sacramento

And thanks to Jody, who - out of an uncomfortable situation - created a place for prayer and for community.

Namaste
 

spit

Senior Member
Messages
129
This is a really trite and random response to a very thoughtful post and thread generally, but this:

We are all one. We are all one.

made me smile because I just watched a documentary about Dr. Bronner. You know, of the castile soap with the ranty labels about all one spaceship earth.

Kooky dude. Don't agree with everything he said, and his interpersonal life seems to have been very, very hard. But damn, I love those labels, and the sincere good intentions of them make me smile every time.
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
Hi Kim. *So* looking forward to meditating/praying with y'all.

One thought on something you said:

This is why I cannot join in discussions here about the 'villains' of CFS - the Reeves, the Wesselys - it is not for me to judge these men, only to forgive them and let go. Bake them cake.

I'm sure you realize this, but there is of course another way of working - even fighting - for change besides using judgment, or resentment, or hate. A favorite quote:

Power at its best is love implementing the demands of justice. Justice at its best is love correcting everything that stands against love.
-- Martin Luther King, Jr.


Happy new year to you and to all.
 

MEKoan

Senior Member
Messages
2,630
I love Dr Bronner and his crazy lables and his crazy soap...

and this crazy, crazy ride

on spaceship earth!
 

Marylib

Senior Member
Messages
1,153
Dr. Bronner

I remember first encountering these labels in California in the 70's. Used to stay in the shower far too long marveling at what I was reading. What a trip, as they say. Loved them.
 
K

_Kim_

Guest
I'm sure you realize this, but there is of course another way of working - even fighting - for change besides using judgment, or resentment, or hate. A favorite quote:

Power at its best is love implementing the demands of justice. Justice at its best is love correcting everything that stands against love.
-- Martin Luther King, Jr.


Happy new year to you and to all.

Thanks fresh_eyes for adding that. I'm a fierce defender of anything that stands against love.

spit: :D:D:D:D:D:D:D:D:D:D
 

Jody

Senior Member
Messages
4,636
Location
Canada
Jody - Where did you get the idea that the Fathers did not believe in Hell?

Martlet,

I have been brushing the cobwebs off of that part of my brain ... it is a slow process.:rolleyes:

I'll start with this, excerpted from a book by Carlton Pearson. Whatever one's views on Pearson might be, he references some of the early Church history that can be researched by anyone interested in this topic.

In the first five or six centuries of Christianity, there were six theological schools, of which four (Alexandria, Antioch, Caesarea, and Edessa, or Nisibis) were Universalist; one (Ephesus) accepted conditional immortality; one (Carthage or Rome) taught endless punishment of the wicked. Other theological schools are mentioned as founded by Universalists, but their actual doctrine on this subject is not known.
Schaff-Herzog Encyclopedia of Religious Knowledge

Augustine (354-430), of African descent and one of the four great Latin/Afro church fathers (Augustine, Ambrose, Jerome, and Gregory the Great), admitted, "There are very many in our day, who though not denying the Holy Scriptures, do not believe in endless torments."

Origen, a pupil and successor of Clement of Alexandria, lived from 185 to 254. He founded a school at Caesarea, and is considered by historians to be one of the great theologians and scholars of the Eastern Church. In his book De Principiis, he wrote: "We think, indeed, that the goodness of God, through His Christ, may recall all His creatures to one end, even His enemies being conquered and subdued...for Christ must reign until He has put all enemies under His feet."

No Christian writer condemned Universalism until the year 394. In that year, a quarrel broke out between the followers of Origen and their opponents. The anti-Origens attacked the tenet of the ultimate salvation of the devil, but did not at fi rst object to the final salvation of all men. But by 553, the Fifth General Council of the church in Constantinople offi cially condemned Universalism. Promoting it could result in punishment, even death, for heresy.

Here is what some early church fathers had to say on the subject:


In the end and consummation of the universe, all are to be restored into their original harmonious state, and we all shall be made one body and be united once more into a perfect man, and the prayer of our Savior shall be fulfi lled that all may be one.
St. Jerome, 331-420

For it is evident that God will in truth be all in all when there shall be no evil in existence, when every created being is at harmony with itself and every tongue shall confess that Jesus Christ is Lord; when every creature shall have been made one body.
Gregory of Nyssa, 335-390

We can set no limits to the agency of the Redeemer: to redeem, to rescue, to discipline in his work, and so will he continue to operate after this life.... All men are his...for either the Lord does not care for all men...or he does care for all. For he is savior; not of some and of others not...and how is He savior and Lord, if not the savior and Lord of all? For all things are arranged with a view to the salvation of the universe by the Lord of the universe both generally and particularly.
Clement of Alexandria, c. 150-211

Stronger than all the evils in the soul is the Word, and the healing power that dwells in him, and this healing He applies, according to the will of God, to everyman. The consummation of all things is the destruction of evil...to quote Zephaniah 3:8: "My determination to gather the nations, that I am assembling the kings, to pour upon them mine indignation, even say all my fi erce anger, for all the earth shall be devoured with the fi re of my jealousy. For then will I turn to the people a pure language that they may all call upon the name of the Lord, to serve Him with one consent"...Consider carefully the promise, that all shall call upon the Name of the Lord, and serve him with one consent.
Origen, 185-254

Here is a link to an excerpt from one of his books on the subject of universalism. http://search.barnesandnoble.com/The-Gospel-of-Inclusion/Carlton-Pearson/e/9781416547938#EXC
 

spit

Senior Member
Messages
129
All one! Dilute, dilute!

Hee! HAHAHAHA! Ha! *sniff*

If there is a God or whatever out there to hear it, I think laughter is maybe the best prayer of all.
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
. Were you immediately well? Was it a partial or complete healing at this time?

I was immediately and totally well. On past occasions, I had experienced a temporary relief of pain, but on this one everything was gone. My husband said that as it was going on, he thought, "I don't know how, but our lives will never be the same." But I am a tester, a sceptic, and I kept expecting it to come back. It didn't. Not until months afterwards and not until after I had asked for a taste of it back. The person whose illness had me whisper that prayer was suffering from severe CFS and the moment I touched her I knew that I had forgotten her pain. Of course, I was not expecting these really bad spells, but I learned I could not dictate the terms. :D

Have you read Jen Rees Larcombe's book, Unexpected Healing where she describes her healing from severe M.E?

Yes, I did read that book, right after it came out.

And that is great. Thank you for sharing your encouraging story, Martlet.

I must admit, I felt a bit silly posting it here. Until now, only that particular priest and my very closest friends know about it. Well, unless you count my doctor.

Happy New Year.

And you too.
 
K

_Kim_

Guest
Awwww, I just made my mom cry and laugh and cry and laugh again. You know what she said when I told her how much I learned from her and my dad about being a Christian and caring for those that are sick - She said, "I guess I got that from Pops (her dad). He never talked about God, either. He just helped those he could and prayed for the sick."

So thank you Pops [who was put in a Christian orphanage by his mother because she couldn't afford to feed him. He stayed there from the age of 7 until he turned 18. He lived until he was 94 and died with a smile on his face.]

I'm going to start the prayer thread now. This one's for you Pops.
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
Awwww, I just made my mom cry and laugh and cry and laugh again. ...

I'm going to start the prayer thread now. This one's for you Pops.

And now you are making me cry.

What a blessing for your mother to hear this, and on New Year's Eve. And yes, this one is for your Pops. I bet he is still smiling
 

Jody

Senior Member
Messages
4,636
Location
Canada
I must admit, I felt a bit silly posting it here. Until now, only that particular priest and my very closest friends know about it. Well, unless you count my doctor.

Martlet,

I know that silly feeling. I have had it before, talking about these types of things. It's an odd kind of ... nakedness, isn't it? Or at least that is what I have felt.

I have seen the type of thing you're talking about. I have also had it happen in my family, at home, more than once. So, I have no doubts about what you've described.

It's good that you shared it here I think.:)