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Home Alone for the Holidays

Discussion in 'Spirituality and ME/CFS' started by gracenote, Nov 19, 2009.

  1. gracenote

    gracenote All shall be well . . .

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    a year of losses

    Hi Kati. It sounds like a really difficult year of losses. How are you coping? It's great that you can come to a forum like this and find comfort and suggestions. Sometimes even a few laughs. Have there been some gains, also, in this difficult year? Perhaps this is a transitional year for you where the past is over and something new and more precious is coming into being. The new year is sure to bring more hopeful things.

    Hugs back. And I will come and find you.

    Gracenote
     
  2. Kati

    Kati Patient in training

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    Gracenote, thanks for the kind words and the hugs!!! Indeed it's been a difficult year, and it's hard to see the end of it since I am still on a decline healthwise. I have yet to see a specialist, not knowing if she can be helpful to me. It is scary, it is lonely and stressful (disability and financial issues).
    It seems to me that I am a new kid on the block, being sick foronly one year, and hearing everybody's stories is heart wrenching and then I wonder if it's going to still happen to me 10 years down the road.

    I am thankful for the internet, for the knowledge I have gained in the last couple of months and the hope WPI has priovided for all of us.

    You know when they say someitmes you get into a crossroad, or sometimes the road is bumpy? Well I think I crashed into the ditch and I need a tow truck to get me outta there :D
     
  3. gracenote

    gracenote All shall be well . . .

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    need a tow truck

    I think you need to send a post to islandfinn. She could quickly get a tow truck to haul you out of the ditch. She's getting good at putting the pieces together. :)

    I think what most of us old-timers would say to you as someone new with this illness is to take good care of yourself and rest. Most of us didn't know what we had or where it was going and so didn't slow down enough.

    I'm sending you wishes for a more hopeful and restful new year. And may you have some sweetness and light during these holiday months.

    Gracenote
     
  4. Kati

    Kati Patient in training

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    Thank you Gracenote for the comforting words.

    I have been told to rest and stay horizontal even if the heart test show "nothing" despite me having some cardiac and respiratory symptoms.
    I have slowed down quite a bit and learnt how to crochet. Can't go out too far anyways since I tire quickly and pay for it later.

    I am sure this community will be a good place to visit during the holiday time. Maybe we can have a virtual turkey dinner. I vote for REEVES to be the TURKEY :eek::D:cool::p
     
  5. shrewsbury

    shrewsbury member

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    Oh Kati - ow - it hurts - don't make me laugh so hard.

    Sounds to me like you found your own tow-truck. There's no doubt that it's a bumpy winding hair-pin turn road. As I've said so elegantly before, ME/CFS SUCKS.

    But you're not alone - virtual holidays together sound great - but I'd rather eat somethig that hasn't gone bad thank you very much. But I do want to take the stuffing out of him. (I know - big groan) Are you gobbling this up?

    It's black, but there are glimmers of hope. Those haven't been this bright for a while for me so I'm celebrating the winter solstice, the return of the light, early.

    cyber hugs back

    islandfinn:)
     
  6. brenda

    brenda Senior Member

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    Christmas alone - but not lonely

    Last Christmas was, I suppose my worst ever. No presents, no family call, forgotten by the world, even after 6 Christmases on my own, but this time invited to have lunch with the pastor of the chuch I was going to - but have not attended since relapse. It was a kind and generous gesture, five single people away from their homeland to spend the afternoon with the pastors family of 5 great kids. For me however, it was agony. Being with an intact family only made me more aware of the loss of my own, since they turned their backs on me and my illness - and this includes an husband and three children and the gathering around the table for about three hours was just too exhausting. Coming back home alone was difficult and I doubt whether I am invited again this year, having become invisibly house bound again.

    But this year I can see how far I have come. I have found a peace deep inside that is above all of these things. I am going to make my own celebration of the birth of my Saviour who has pulled me through all of this and has given me something that no-one can take away.

    I don't know how much of this is due to the inspiriation of a woman I met at the begining of the year who was giving a talk on her work amongst the survivors of the Rwanda masacre, herself being a young girl at the time and during the masacre spent her time in hiding and managed to survive.

    She spends her time traveling around Europe with her partner, to raise funds for the continuing help needed by the women back in Africa who were severely traumitised by witnessing the torture and rape of their loved ones and many had their whole families destroyed.

    She shows slides of these women and the work which is done to help them comfort each other with their wounds, still raw for some, and provide means for them to regain self esteem and independance through giving the tools to enable them to provide needed services and work to support themselves.

    Each time she shows the slides, she must go though the trauma once again but is willing to do it in order to help others. This deeply touched me.

    I have gained the ability to look beyond my own pain and connect with the pain of others and in some ways share it.

    I am not saying that Christmas will not have its difficult spots as I have the suicide of my eldest son to cope with too, but I have found that here is still life after the worst of grief and there is something to be gained from it that is only achieved through going through the fire.

    Brenda
     
  7. gracenote

    gracenote All shall be well . . .

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    through the fire

    Brenda,

    I loved that you told us about that courageous woman from Rwanda who, despite her horrific suffering, is helping these women "to comfort each other." She has been through a kind of devastation that I cannot even imagine, and yet she is bringing help and hope.

    Reading you tell about her I suddenly feel smaller, my personal suffering less profound. At the same time I feel enlarged and connected to a whole world of suffering out of which amazing beauty grows.

    And then you mentioned the suicide of your eldest son. I am so sorry. You truly have been through the fire.

    Thank you so much for sharing. You have touched my heart today and I feel blessed by it.

    Gracenote
     
  8. brenda

    brenda Senior Member

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    Thanks gracenote

    Here is a site about the woman - who is called Denise

    http://www.solacem.org/programs/programs.html

    She is such an unassuming gentle person. The charity sells packs of lovely handmade Christmas cards to anyone who would like to help raise cash for this ministry.

    Yes it does help one to feel enlarged to hear of such work.

    This is the thing that I do not like about Buddhism - to me it seems so self centered - not wanting to upset Buddhists here though.

    How often do you hear about crisis aid and work like the Solace Ministry done by Buddhists?

    The aim of it seems to be to get rid of ones desires and attachments but this also seems to include compassion for others which is the source of motivation to provide help. The same idea is in Hinduism and the theory of Karma, whereby to help others is said to interfere with the rebirth cycle and the need for the person to suffer in this life to avoid it in the reincarnation. In these cultures you will see terrible suffering which people will just turn away from because of their religion. Christianity has always frowned upon this and has given help to the needy which is the natural and normal response - it is what a child will automatically do.

    Buhdda himself was said to have left his wife and young child to go on his travels.

    Although the practise of meditation will help people to calm down, one needs to take a serious look at the whole philosophy behind this before one gets drawn into it. Again, I don't want to be negative about others beliefs, but we must be discerning and kniow where things are coming from. If these beliefs help some then that is good, but things are not always as they seem and we can unwittingly be misled.
     
  9. gracenote

    gracenote All shall be well . . .

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    more contemplative, less dogmatic

    Hi Brenda,

    That is a beautiful website and I am moved by what they offer. "Solace Ministries was established in 1995 as a way to comfort widows and orphans who had endured the great tragedies of the 1994 genocide in which over 1 million people were murdered." It reminds me of the verse in Psalms that says "The Lord is near to the brokenhearted, and saves those who are crushed in spirit." I can tell that you have been very touched by this ministry and by Denise.

    I am not so sure about the conclusions you have come to about what kinds of believers can have compassion for others and how that compassion is carried out. For many years, my grandparents operated a self-supporting orphanage in Burma caring for up to fifty children on a farm near the Irrawaddy Valley. My mom grew up there and helped until they were forced out by the Japanese during the war. My mom then married, and she and my father went to Japan as missionaries offering assistance to young churches. That is where I was born and lived until we came back to the states when I was seven.

    I am steeped in a Christianity that expressed its beliefs by helping those less fortunate than myself. Over many years I have come to a place in my own spiritual growth where the Christian teachings that I grew up with and that had formed my life began to feel too small. One day it felt like the skies opened and my vision expanded, and I no longer needed these same labels to describe my faith. I am ever so grateful to my parents for introducing me to a spiritual reality greater than myself. And I am grateful that this strength continues in me as I offer my services to others. But I must tell you, Brenda, despite myself, I am becoming more Buddhist everyday. I am not "a" Buddhist, but living consciously with this illness has caused me to see life in a more contemplative, less dogmatic way. What I believe is that love is the key. Love for those less fortunate than ourselves, love for our family, love for those with differing beliefs. That is the story of the gospel, "For God so loved . . ." I have been learning how to open my heart to others and love more because I have allowed my faith to grow. I am reminded of this verse:

    "Beloved, let us love one another. For love is from God, and everyone who loves is born of God and knows God. The one who does not love does not know God, for God is love." I John 4:7,8

    Whoever, whatever my God is is love. And if I have love then I have God even as my beliefs no longer look like the Christianity I grew up with. I hope you can enjoy open hearts and love that comes from many places and in many forms, and see love that is offered freely from those that don't subscribe to your faith.

    Thanks for introducing me to Denise and Solace Ministries. May you have a very blessed day.

    Gracenote
     
  10. liverock

    liverock Senior Member

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    Gracenote and Brenda,

    As I was reading your posts this phrase came into my mind. Have a peaceful day.

    "You are precious in my sight, and I love you" Isaiah 43 v4
     
  11. brenda

    brenda Senior Member

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    Thanks again Gracenote

    I see that there is a link for work in the US, and that Denise is more centred in Germany

    http://www.solaceusa.org/usa_about.htm


    I very much agree with and identify with what you have said here. In fact, the churches as they are, in the main, have caused me endless pain because I did not fit into their mould of what they understand illness to be, nor would they do anything to make it easier for me to attend which shows that they are not living the true Christian faith which is as you say, love to all. Sadly a lot of churches are like this and a lot of people have been damaged by them. I do not defend them nor do I go to the churches these days.

    But the real thing is there in such as Solace Ministries and others. I have found that traditional Quakerism is much more to my idea of what it should be like. When they were in the early days, they turned Englsih society upside down as they campained for humane treatment of the mentally ill, the poor and other disenfranchised people as they believed that all men should be treated the same. And they were non dogmatic.

    I do see the attraction of religions such as Bhuddism, but as I said, it is eminently self centred and the true expression of love for others is to deny self and serve them not to be engrossed with relieving our own suffering. One thing I have noticed in those who follow these type of religions is that they become sort of less moral. dreambirdie told us about a Bhuddist orgy she walked in on. I am sure that these people do not intend to become less moral and that their intentions are good but this is just what I have noticed. Once you deny Christ, then you can get into some very dark places.

    May you be blessed too!

    Thanks liverock

    Brenda
     
  12. gracenote

    gracenote All shall be well . . .

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    the real thing

    Dear Brenda,

    I feel like you are describing my experience. When I first got sick it almost felt like I disappeared. I had to stop my activities and volunteer work and I had the sense that the waters closed above me and no one noticed even the ripples caused by my absence. When my marriage ended (and I moved), I tried to get help from my new church. They had home meetings that met in my small town. I went a few times and explained that I would not be able to show up often, but could someone please come to me. I was alone with two teenage children, very ill, and on welfare always trying to stay ahead of getting evicted. It felt like no one could hear me. It was out of sight, out of mind. It was an excruciatingly painful time in my life.

    But people are people. We all have our flaws. We all have our blind spots. We fail in ways that we should know better. This time caused me to really evaluate my own actions and my own responses. This time turned into a deeply transformative time for me. I grappled with the dissonance with what the churches taught and how they lived these beliefs out. And I grappled with the dissonance I found in myself.

    I see you grappling, also, and I like that you see that "the real thing is there."

    I have really wrestled with not letting myself become bitter, not letting myself be crushed by what at times seems so unjust. When we see people like those in Rwanda that are beginning to flower again in spite of horrible injustice . . . when we can see that and admire that and want that . . . I think our hearts are becoming whole again.

    I am so sorry that you have suffered such pain. No one deserves that. And I am very happy that you are looking for light and sometimes finding it.

    My heart is with you,

    Gracenote
     
  13. brenda

    brenda Senior Member

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    Hey gracenote

    And mine is with you too!

    I am so sorry for the pain you went through by the neglect of the church you went to for help, but I am so glad to hear that you fought against feeling bitter. I have found that a sense of injustice is the hardest thing to overcome. But we can overcome all the hurts and damage that is done to us and in the process produce something beautiful. And part of this growth is as you say, a recognition of the not so nice bits of ourselves, and getting in touch with the helpessness to change ourselves to the extent needed and desired without the help of something stronger than ourselves. For me this has been Christ.

    Seeing what is being done in Rwanda gives me hope not just for me but for the strength of the human spirit especially if it has turned to its Maker for help.

    I am now happy to be 'outside the camp' as life is more real out here and people are more open and know the value of love and friendship. In the camp, it is often too filled with action and concerns about superficial things for there to be anything of deep spiritual work.

    blessings
    Brenda
     
  14. Dreambirdie

    Dreambirdie work in progress

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    my meditation on the sacred

    Hi Brenda and Gracenote--

    Interesting conversation here, which I came upon as I crawled momentarily out of my hibernating crash.

    JUST TO CLARIFY: I did write in one thread about how the poet Robert Bly, in the midst of the first poetry reading I ever attended, at the age of 19, confronted the Naropa Buddhists in Boulder about their orgies. It was at that reading, that I first heard Bly tell the story of how these same Buddhists had attempted to force W S Merwin and his wife to participate in an orgy against their will, during one of Rinpoche Trungpa's Buddhist retreats. I also wrote about a Buddhist orgy I accidentally walked in on during this time, on the way out of an apartment building, after a class I was taking there. Sad to say this is ALL very true. Back in the late 70's, the Boulder Buddhists had QUITE the reputation. Rinpoche Trungpa, who is responsible for "bringing Tibetan Buddhism to the West," was a known drunk and womanizer, and his "crew" were completely out of control in regard to their sexual indulgences. They excused their own behavior by calling it "crazy wisdom."

    HOWEVER, and UNFORTUNATELY, the Buddhists are NOT THE ONLY ONES that I have seen to demonstrate immoral and out of control behavior. I grew up Catholic, attended parochial school for 8 years, and witnessed PLENTY of immorality and outright brutality there. Some of those nuns, especially the principal MOTHER ANASTASIA, were absolutely vicious and sometimes unconscionably cruel. They believed in corporal punishment--spanking and paddling, which they angrily inflicted with great self righteousness at a couple of the boys in my class, bringing them to tears and then parading them in front of the class to prove how "BAD" these kids supposedly were. Though I was never subjected to the beatings myself, it sickened me to watch them take place--it was one of the ugly things that ultimately led me to swear off Catholicism and Christianity forever.

    In my teens I quit the Church quite dramatically, by writing my own letter of excommunication to the Pope! This was after I read all about the Inquisition and the witch burnings of close to 9 million of our European ancestors, most of them women, many of them herbalists and midwives! ... and the slaughter and outright genocide of millions of native people all over the globe. I was absolutely disgusted that this kind of crap was being done in the name of "GOD."

    After I fled the fold of Christianity, during my early 20's and at the peak of my CFS, I studied and participated in many spiritual traditions: Buddhism (Zen, Tibetan and Vipassana), Sufism, Native American ceremonies, and a Hindu-Indian oriented meditation group. I found hypocrisy and shadowy behavior in ALL of them: abusive behavior, sexual impropriety, boundary violations. I found holier-than-thou and more-enlightened-than-thou attitudes in ALL of them. I found many members of most of these groups to be judgmental, shaming, blaming and even outright contemptuous about illness. I had been reading Jung's volumes during this time too and studying various forms of mysticim--the Gnostics, the alchemists, the transcendentalists, trying to find exactly where I fit in to the spiritual scheme of things. After a LOT of soul searching, many disappointments and some VERY BIZARRE experiences, I finally concluded that the only "GOD" I could ever really worship was the great spirit of NATURE, and that the only spiritual guidance I was willing to receive would have to be one that came through the DIRECT PIPELINE of MY DREAMS. It was and is in the presence of nature, that I find my peace, that I tune in to the "sacred" and the sublime. And it is through my dreams that I connect with the guidance of my soul. If anyone asks me about my spiritual inclinations now, I tell them I am a dreamer (in the TRUE sense of the word) and a mystic transcendentalist. I have no more interest in spiritual groups of any kind, and hallelujah for that!
     
  15. andreamarie

    andreamarie Senior Member

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    My shrink is out of town and I called my rabbii,who retired young. Xmas is not an issue with me and Hanukah NEVER was, but Thanksgiving is a KILLER.

    It was our big family holiday. Even when my late mother worked sixty hrs a wk she had twenty five people for dinner. Four years ago she died on Thanksgiving day. The irony was lost on no one.

    In the few years afterward I went to a friend's house for brunch, but she's had a nightmare couple of years and faded from my life.

    Last year I went to a friend's house and it was the MOST depressing event imaginable. I don't mean I was depressed: you couldn't have staged it. For starters, her schrizophrenic brother showed up.

    This year a friend and her husband will stop by on their way home from dinner with a plate of food.

    I was blessed with one of the great mothers of all time and I miss her dearly.
    I am single, live alone, and the few relatives I have are scattered.
     
  16. Sunday

    Sunday Senior Member

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    Hello Andreamarie, I am lucky to have places where I can go for Thanksgiving, but this year I'm too crashy to go anywhere (especially since I'm traveling for Christmas and need to save up energy).

    But it is nice to know I'm invited to places I would enjoy if I went.

    Maybe you can start thinking about how you're going to cultivate the friends you want to spend Thanksgiving with? From your posts I'd say you're an intelligent and interesting person, I'm sure people respond to that. It's very difficult when you've been used to having holidays happen in a certain configuration and then that changes, it feels very lonely and unsettling (and especially since your mother was a big part of Thanksgiving, I'm sure the holiday calls her up. I've just passed my (deceased) mother's birthday, I always find myself grieving about this time).

    This Thanksgiving, I'm going to let myself rest just as much as I want, knowing that I don't have to be responsible to anyone or anything for 4 days will be a holiday for me. Maybe I'll get some gardening done. Maybe I'll finally clean my kitchen or put together a cupboard for my stacks of catalogues and papers. I'm planning to call friends and family, if I'm not too crashy. Because I'm crashy, all of the above will help me be thankful.

    Your situation is different, but I find that it always helps me to find a project I can really get my teeth into - whether it is something physical, or research, doing something creative, or even a letter or phone call. Or sometimes what I just need to do is go into trance state and see what emerges. I'm sending my good wishes that you'll find ways for your day to give you some cause for true appreciation of your life.
     
  17. andreamarie

    andreamarie Senior Member

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    I don't know what you mean by "cultivate the friends I want to spend Thanksgiving with." I work hard at trying to not isolate myself and last week had three social outings. They took their toll but were really worth it. I don't have that many friends and they are either leaving town or have invitations of their own. I could find out what a cousin is doing, but I don't want to travel. I did it on Thanksgiving for the last six yrs of my mother's life and it truly is the worst time of the year to travel. Having my friends stop by with a plate and visit is really what I want. It means I won't be worried about crashing.

    My shrink did call and he said something very meaningful when I said it was ironic that my mother died on Thanksgiving. He said use that to celebrate her generousity, giving and amazing nurturing. He knew her and really loved her. She asked me for his address and told me she'd like to write him a letter. She wrote a letter of thanks for all he had done for me seeing me through my illness's. He's now been practicing over forty years and he told me that it was the only letter he ever recieved from a parent and he keeps it in his safe deposit box. People of my mother's generation (born 1910) were not comfortable with psychiatry, especially since they had a nasty habit of blaming the mother.

    I have nothing planned; I might just watch movies (my hobby) and read the rest of the wknd. I just want to get through Thanksgiving.
     
  18. Stormyskye

    Stormyskye

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    That makes me sad!

    Are you sure there is no possible way you can get together with your family? I hope you can find a way to get there. It's so wonderful to be able to get all your children and grandchildren to the same place at the same time. In this day and age, with families so spread out, it's fairly rare. I count my blessings when we can get all ours together.

    The Skype idea is a good one. If not that, then some phone time with them may work.

    Old favorite movies on holidays are a great way to pass the day. Doesn't even have to be a holiday one. It's also a good time for a special meal, whatever you love. Serve it on your good dishes. Play favorite music. Look through old photo albums.

    Find something to laugh at. Be thankful for what you do have.

    Decide that it is time for a change. And believe it. Everyone has a whole year to make the changes to make their lives be what they choose for them to be. Decide. Choose it. Make it happen. Some of us have recovered our lives. You can too.
     
  19. gracenote

    gracenote All shall be well . . .

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    I choose to be thankful.

    Stormyskye, I'm wondering if you would like to share what you mean by this. Many of us have worked really, really hard to "make [our] lives be what [we] choose them to be," and have found that life has had something else in mind for us. I haven't found a way to "decide it," "believe it," "choose it," and "make it happen." This almost sounds like if we haven't "recovered our lives" it's because we haven't "chosen" it.

    I have chosen, though, to "be thankful for what I do have," and on this upcoming day of Thanksgiving, I will count my blessings and be ever so grateful for everything that is wonderful and full of wonder. I will also be grateful for my life with all its imperfections and uncontrollability.
     
  20. gracenote

    gracenote All shall be well . . .

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    celebrate her generosity

    Andreamarie,

    Following your therapist's suggestion that your mother's death on Thanksgiving could be used "to celebrate her generosity, giving and amazing nurturing," if you would like to post to us on Thanksgiving why you consider her "one of the great mothers of all time," I would be honored to read it and I'm sure many others would also.

    We could start a thread called "People We Are Grateful For," or something like that. I'm thinking of starting a thread called "1 or 10 or 100 Things I'm Grateful For Today" so we have a place for us to gather in gratitude.
     

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