 30 May 2006, 10:54 PM
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jimtzu
Joined on 01-13-2006
Posts 169
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as some of you may know through various psts this last year i have a friend whos husband has prgressive MS, which is a steady decline resulting in loss of functions and inevitably death. the external symptoms are being treated (not always satisfactorally by the medical industrial complex) as best they know how at this point.
the reason i'm posting this is to get some ideas and insight on how he can deal with the internal (psychological and spiritual) aspects of coming to terms with his disease and the acceptance of where he is at this moment.
perhaps some wisdom of a personal nature or some sources and/or examples from the psychological/spiritual fields.
not only does he deal with pain and the side effects of medications, he is struggling with accepting his condition and the different role it has put him in... the loss of his manhood (virility, no longer being the bread winner, not being able to take care of his children, etc) and his "human hood" ( feeling helpless, worthless etc)
finding a way for him (or anybody) to accept his disease and where he is now and the possible future will do wonders for his psychological health and those around him. and a good lesson for us all....
any ideas?
http://www.myspace.com/homecookinstudios ------------------------------------------------------
silence is the language of god, everything else is just a poor translation. FTK
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31 May 2006, 12:10 AM
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integralschism
Joined on 01-13-2006
Posts 278
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Re: acceptance of what is
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i wish i had something to offer jimtzu.
it makes me feel sad. i imagine one of my loved ones in this situation and i just feel a very deep remorse and sadness. all i know is that i would want to be with them. and try to share their pain as much as i could.
if it was ongoing, would I have trouble staying with it? if it took years to progress, would i lose the immediacy and poigniancy of my sadness and connection to them? probably. I suppose it would come in waves.
my prayers for your friend and for all of us.
Bryan
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31 May 2006, 8:50 AM
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iconasostacles
 
Joined on 01-13-2006
Posts 498
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Re: acceptance of what is
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*
No suggestion lives up to the horror of the situation. Obviously some kind of witnessing meditation would help in the process of orienting identification beyond the condition of the physical body. Sometimes that's a lot to ask of someone who's taken a severe vital blow. Mantra work can very helpful for strengthening and organziing the mind, relaxing the system and restoring a feeling of partial control. In many ways it is the process of getting some control which gives us the courage to surrender in the face of what we cannot possibly control.
It may seem as though nothing worse could happen, but the human mind always has a shadowy "even worse" that it struggles with. Working in conversation with someone to find out what is the core of their event, what terrible thing (beyond the condition itself) do they think the condition signifies or might lead to. By accepting the worst case scenario -- even if it is ludicrous -- we often gain the slack with which to accept the horror of the actual.
And don't forget to pump qi in there whenever you get a chance.
My heart,
Icon.
"One must be a sea -- to receive a polluted river and not be defiled." Zarathustra
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31 May 2006, 9:06 AM
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Tiki
Joined on 01-13-2006
Scotland
Posts 402
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Re: acceptance of what is
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Jimtzu,
Familiar. I manage a team who do assessments and care management for adults who need support at home. My work area is an MS cluster area (thought possibly linked to the history of coal or steel).
My aunt, mother's younger sister contracted MS in her 20s and died at 44. She was about 10 years older than me so the nearest thing to an older sister I had.
One of my friends was also diagnosed with progressive MS in the past year.
I find a focus on helping people live as well as they can for as long as they can helps. That means using practical aids and technology when needed to maintain independence. Accepting care because remaining independent simply becomes too exhausting. I've seen people take 2 hours to shower and 2 more to recover rather than accept help. It means good time for other things gets lost.
Planning for the future, making the decisions he may not be here to see through can help. That means dealing with mortality. There are practical arrangements which need to be made and there can be a certain relief once that's done.
Your friend, also, is supporting her partner facing this awful illness. But she has to have room somewhere for her own feelings (and they might not all be pretty, and that comes with guilt too). It's not unreasonable to feel some anger or resentment at someone who is (possibly) about to leave you to raise the kids unaided. The rational knowledge that its not deliberate doesn't mean those feelings don't emerge. It's all part of grief, loss and dealing with major change.
Then there's the kids, what they know, what they are told, how they cope.
Lots of people with lots of needs. Good friends like you can help, just being there and listening and doing small practical things that present themselves is a huge contribution.
It's also maybe worth remembering that some people live with MS for decades. One of the difficulties is the unpredicability, both regarding what functions will be affected and over what timescale. Some people are diagnosed early and continue to work for years. Others are only diagnosed much later, after years of knowing something wasn't right, but no-one being sure what. So it really is worthwhile thinking in terms of living with this condition as opposed to dying from it.
My thoughts are with you, your friend and her family
Liz
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31 May 2006, 10:29 AM
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jimtzu
Joined on 01-13-2006
Posts 169
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Re: acceptance of what is
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Bryan... thanks for the kind words and thoughts. accepting what is is a universal problem. we all have something that we don't like or arn't ready for that we need to accept. in theory it's easy, just surrender to the condition and be mindfully aware of it in the present. but it's so much different on the inside. how to let go when we're trying so hard to hold onto what was once so natural. Icon.... i have suggested meditation of some sort, but neither of them have had much experience in those areas. i have given them the Insight meditation cd's and many brainwave entrainment cd's which he listens to and likes and seems to help a little. part of the problem is that throughout this whole situation the doctors have totally left out the psychological/emotion side (UL) out of the equation. they are finally getting around to that on their own. and i'm hoping that will bring some balance to it all. i like your suggestion of pumping qi, but in my experiece with qi gong is that it builds up heat in the body, and part of the problem with progressive MS is that the patient can't handle heat very well, summertime is very rough on them. is there a way to use qi to actually cool the interior? Liz... i appreciate your insights. my friend, Lori, has been dealing with MS for a long time. her mother has had remittant MS for 30+ years and now her husband has the progressive kind. quite a blow when you're in your 40's. they had him on oxycontin for pain and he went thru terrible withdawels when that got to much, now they have him on methadone and pretty much the same situation there. part of the problem now is anxiety and panic from the meds and side effects, compounded by the sense of worthlessness of not being the man he once was. they are finally getting to see psychiatrist so hopefully that'll be some help. the last med doc visit it was brought up that she might only have to deal with this for another 2 years (leaving her to wonder if that was before it stabalized or death, i'm thinking the later) fortunately the kids are 20 now, but that doesn't stop dad from getting depressed when he can't take his son fishing like they used to. i'm thinking they should concentrate on the interior mental/emotional aspects so he can accept the situation and enjoy the remaining time,such as it is.... Lyris... thanks for the Katie recommendation. i havn't read any of her work but will definitely pass that along. perhaps it will offer some relief to one or both of them.
http://www.myspace.com/homecookinstudios ------------------------------------------------------
silence is the language of god, everything else is just a poor translation. FTK
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31 May 2006, 11:13 AM
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Jacinda
Joined on 01-13-2006
Posts 107
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Re: acceptance of what is
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but it's so much different on the inside. how to let go when we're trying so hard to hold onto what was once so natural.
Jim,
I want to echo the enormity of this......we try to hold on when we are already falling....and fast....it helps to hit the bottom, then you can get up......
-By accepting the worst case scenario -- even if it is ludicrous -- we often gain the slack with which to accept the horror of the actual.
-Icon -Planning for the future, making the decisions he may not be here to see through can help. That means dealing with mortality.-Liz
This helps keep a person aligned with Dharma...living with purpose
even if you have fallen into a hole....you can start to climb out.
to quote Eckhart Tolle....Surrender doesn't mean you don't take action.
If you were stuck in the mud...you wouldn't say, "oh well, I guess I'm stuck in the mud."
we may not like the choices, but we still have a choice.
On mortality...and the death of the man he once was....
I highly recommend Victor Frankl's A MAN'S SEARCH FOR MEANING. *A Book Review* Man's Search For Meaning By Victor Frankl by Michael C. Gray November 25, 1998 Victor Frankl was a Jewish Austrian psychiatrist who was interned in a Nazi concentration camp during World War II. He lost his wife and family. Yet he emerged in triumph. His story and this book have inspired many, including Steven Covey, of Seven Habits fame. Frankl observed that many of the prisoners died when undergoing less hardship and suffering than those who survived. The survivors tended to be people who envisioned a future for themselves despite their present suffering, people who believed they had a meaning in life and did not surrender to despair. He developed a psychological treatment method called logotherapy. According to Frankl, logotherapy is striving to find a meaning in one's life as the primary force. Frankl would help patients improve their mental health by helping them to discover meaning in their lives. Although Frankl calls himself an existentialist, his is not the existentialism of despair of Sartre or Camus. Frankl is a scientist who believes that a valuable method of learning is to gather empirical knowledge from experience. He wholeheartedly embraces life and believes we can make our lives rich with meaning. There is so much wisdom in this book that I can only give you a taste. It should be available in any public library, so get a copy and read it. "The salvation of man is through love and in love." "What matters is not the meaning of life in general but the specific meaning of a person's life at a given moment. Everyone has his own specific vocation or mission in life to carry out a concrete assignment which demands fulfillment." "Ultimately, man should not ask what the meaning of his life is, but rather he must recognize that it is he who is asked. Each man is questioned by life and can only answer to life by answering for his own life, by being responsible. Responsibleness is the essence of human existence." Source link: http://www.profitadvisors.com/meaning.shtml
This book did inspire a lot of grace and acceptance in the most heart-wrenching time in my life.....I borrowed this book to my dad, but I recall it has the most beautiful poetic description of life revealing its mystery to a woman who had been imprisioned for years and her only view to the outside was through a small window.
....and she could only see the the tip of a tree branch....and as it swayed....and as she was present to the budding life on the branch....she says the tree spoke to her....
the tree told her....
I AM LIFE!...
Birth and death are opposite....life is now...and never not now.
*A MAN"S SEARCH FOR MEANING by Frankl does delve deep into the painful stripping of identity...as the men who lived in these concentration camps were stripped of all personal belonging, clothes, and are shaved clean, and then massed together to be only used as a work tool.....and when the men were too sick and worn to work...they were sent to the furnace.
LOVE,
Betsy
Love and do what you will. -St. Augustine
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31 May 2006, 2:21 PM
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natzucow
Joined on 01-13-2006
Posts 19
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Re: acceptance of what is
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Hey Jim, I had a pretty deep depression when I had a big change in life conditions and I could share what I learned from this perspective in terms of shaking the mental funk that ensued. I would say that your friend should of course be honest about everything and not be averse to any thought-feeling in his mind no matter how defeating it feels/seems, and that then he should work on the fearlessness that balances the fear, however deep into Spirit he needs to dive. I’m not ready to die yet, but I could see that if I knew I was going to die soon, I could prepare in some way that was indicative with the level of fearlessness it would take to accept my own death. I feel like this is something not many people are really willing to do so this is something that he will have to rise above, while still coming to terms with, in order to really be okay in the midst of this suffering. This may be a stretch but I think the faster your friend comes to terms with his death the sooner he will be able to witness his own transcendence of life in the way that he can distinguish between that which deteriorates and the basic awareness that stays the same. He may even notice that that which was bothering him before was not so bad at a later point and see some improvement which could then be a natural healing of sorts, to see improvement in himself in someway. For me depression was the feeling of stale, so if your friend could take up a new hobby that inspires him, that he can expand in in some way, I think it would help his psychological health. That’s pretty tough though, your friend may not really feel like getting excited considering what he’s dealing with, but I believe this is where your friend needs to stay centered on fearlessness. If your friend can remain clear and fearless he will at least be prepared for dealing with this. Your friend’s loss of sex drive is just difficult. When I was depressed I lost mine to some degree and I just plain feel better with it back. Putting myself back in that situation where I had a contracted sex drive, I would say that your friend must accept that he is just an unhappier person with a lack of sex drive and then go from there. From acceptance he could look at that truth and say okay I’m practicing fearlessness with that truth and really accepting the fact that my manhood is taken away. From here he still keeps his firm sense of self that can really feel the life still inside of him, which I think when exercised, creates the type of endurance necessary to stay clear in the basic goodness of the mind. When his natural state of mind is good and not deluded or fearful, he can continue to remain aware of all the thoughts and feelings going through his body-mind which may be all he can do during times when he’s scared. That and practicing fearlessness in the face of his life and death could make him feel better mentally as well as physically. I think it takes a serious mind for your friend to deal with this so I think he should find out what it takes to be serious as well as joyful in some way. Can he bridge those two in a real way during the onslaught of depressive thoughts that a time like this produces? The questions he has to come to terms with take a clear mind to navigate through so he could practice developing basic love for himself. To just start loving himself for no reason would be healthy. If he can’t turn on that quickly he could investigate why he can’t be more open to himself and look at himself with fearlessness and clarity, and feel better that way because it would unlock some potential in his mind. Pain meds dull the mind so he could accept that he may become loopy and look for ways to be creative maybe through interesting ways to deal with his own situation, or in the relationships he has with his family in light of this news about his health. If your friend can deal with his situation in a clear and honest way without hiding, he will be remembered as having a strong Spirit by his family, surely otherwise as well, but also specifically with how he can deal with what has come his way. For me, other people offered sympathy and compassion when I had a difficult change in life conditions, which was nice, but for me, the main thing that made me feel better, physically and mentally, was basic awareness of the thoughts I was having about my situation. From here I could see the ways I was hiding and then I could practice fearlessness because my fear was out front and tangible instead of automatically being shuffled away which created this anxiety in my mind and body. For me, control in a wider sense helped me to step outside of my closed-in mind. I said, okay here I am one person in this entire Universe, all I can really do is live my life with clarity, honesty and the fullness of quality already in me, which is developable or uncover-able in some way. This helped me kind of get back to square one while still encompassing all that I had learned and experienced up to that point, and from there I was able to slip back into the fluidity of the spinning wheels of clear thoughts, which were then based on a more tangible and pure intention it seemed/seems. By uniting subjectivity and objectivity along with fearlessness in awareness of the present moment I regained some order, in a wider sense, of my thoughts and from there I was able to rejoin in various relationships, in a more meaningful way which provided me with the meaning that helped me get, to some degree, a driving purpose which made life fun to live again which then had positive mental and physical effects. I’m not sure if that would be wishy-washy to your friend but it is what helped me so I thought I would share my own experience. I will hope for unwavering strength during a defeating time for your friend, take care, Natzu.
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31 May 2006, 4:02 PM
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timelody
Joined on 01-13-2006
Las Vegas
Posts 573
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Re: acceptance of what is
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Jim,
You said your friend's husband. How is your friend doing in all of this? And perhaps what is your friend doing to come to terms with this?
Relationships are extremely important, and I would definitely have to input that your friend could be a tremendous help just through consciousness; cultivating acceptence, things that come from witnessing awareness, (obviously true compassion) etc. any type of spiritual practice, and I would certainly add prayer.
Just some additional input, hope it's good for something.
Peace
the essential foundation for spiritual awakening is a whole person, not a fractured one
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31 May 2006, 4:10 PM
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MichaelD
Joined on 01-13-2006
northern ca
Posts 373
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Re: acceptance of what is
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Hi Jim,
Just wanted to add my heartfelt sympathy to you and your friends.
I want to recomend Stephen Levine's books here. I gathered MUCH insight and was changed by the wisdom contained in Who Dies? and Healing Into Life and Death. I recomend these books to all those concerned in the situation.
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31 May 2006, 4:48 PM
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timelody
Joined on 01-13-2006
Las Vegas
Posts 573
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Re: acceptance of what is
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Jim,
Shucks, I just read more of the above posts and learned now my two cents seems a little null and void . . . I'm so sorry.
Your simply being there and working with your own consciousness and sharing with them even in unspoken ways does make a difference though - so bless you for that.
Sorry, wish I had more ideas.
Peace to you all.
the essential foundation for spiritual awakening is a whole person, not a fractured one
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31 May 2006, 4:58 PM
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iconasostacles
Joined on 01-13-2006
Posts 498
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Re: acceptance of what is
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*
 jimtzu wrote: | | i like your suggestion of pumping qi, but in my experiece with qi gong is that it builds up heat in the body, and part of the problem with progressive MS is that the patient can't handle heat very well, summertime is very rough on them. is there a way to use qi to actually cool the interior? |
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There absolutely is -- but the problem is that you have to be able to modulate that output in yourself (something often requiring a great deal of practice).
Additionally, even fairly "neutral" qi can cause increased discomfort as it works to help reorganize the functioning of the body. One wants to be as gentle as posslble. A light tai chi or qi gong practice which your friend could do? Plants and running water often put off a positive energy which does not impinge too strongly on the human system.
Light "passes" over the body may be a gentler, cooler way to go than direct "pumping". So much of this kind of stuff is dependent upon the particulars of the individuals involved. The only real way to find out is to make some small experiments and see if it is problematic or not.
The subtle energy are just so important in helping the tissues to align themselves and "remember" what health and strength feel like. Even if they can't always reverse an illness, they can certainly provide a foundation from which to bring a lot more consciousness into our physical situation.
Bless,
Icon.
*
"One must be a sea -- to receive a polluted river and not be defiled." Zarathustra
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31 May 2006, 11:42 PM
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jimtzu
Joined on 01-13-2006
Posts 169
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Re: acceptance of what is
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hi.. thanks for all the responses. this is a topic that affects everybody at one time or another or every day for that matter. a lot of time on IN is spent in talking about theories, maps etc that we can forget about the realtime applications of what we're discussing. it's when the rubber hits the road that it all becomes worthwhile, when it comes down to it, it IS the territory that we have to live in....i am sharing this with lori and darren, i hope that is all right with everyone. not sure of the outcome, but hopefully some perspective and be attained. betsy... i always appreciate your words and compassion. i'll be checking into the Frankl book to see what insights can be gleaned from it. it is about choice(s) and how we react to whatever situation we find ourselves in. lori's mother's reaction to her own situation is one of acceptance and making the best of the world she's in. but a lot of that comes from the individuals makeup to how one will react. darrens decline has been farily rapid, just a few years from being diagnosed to having to take disability and now barely able to walk. so i imagine it's hitting him like a ton of bricks.. i think there's some shock factor there. natzu..... you are so right about coming to terms with our death, whenever, however it comes. seeing that worst case scenario will put the present situation in the proper perspective so that we can live fully in the present, what ever that entails. i'm not sure that they've gotten that far yet, but i think that last "only a couple years" comment by the doctor has woken lori up, so maybe they can talk and come to terms with it. he does need to find something he can occupy his mind/time in a positive way, but between the meds and the illness he can barely walk. hopefully they can knock some of the meds down so there will be more clarity so when he loses the bodily functions he'll still have his mind and awareness. tim.. thanks for your posts.. i too worry about the effects on lori.. never easy being the caretaker. she's used up all her sick/vacation time taking care of him and doc appts. so things are starting to be stretched pretty thin. so i'm doing what i can to add some moral support for her in any way i can, and one of the ways is picking the brains of the compassionate people here on IN. michael... thanks for the tip on the Levine books, i havn't read any of his stuff, but will be checking it out. Healing in to life and death sounds like it could help both of them. icon... physically he's too far gone and medicated for any sort of practice. am hoping they can find a psychologist who can do some sort of bodywork, and release some of the negative emotions that are built up. a situation like this would be a good test for the 4Q AQAL theory/system.
http://www.myspace.com/homecookinstudios ------------------------------------------------------
silence is the language of god, everything else is just a poor translation. FTK
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01 Jun 2006, 12:30 AM
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paleblueiris
Joined on 01-13-2006
Portland, OR
Posts 44
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Re: acceptance of what is
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Jim, i'm really glad you posted this topic
and have a lot of respect for your willingness to be there
and i write this wishing you all the strength and wisdom you can find in your friends' situation
as you may or may not know from this thread:
http://in.integralinstitute.org/public/forums/ShowPost.aspx?PostID=12058
i have gotten pretty deeply involved with this subject lately
but even then, i wouldnt dare begin to diagnose your friend's (and his family's) spiritual pain without hearing much much more
but here are some links i hope will help...
http://www.webhealing.com/
this is one of the best practical informational sites that i know of
especially in terms of masculine grief and dying
...a ton of resources and articles here
http://www.sacredartofliving.org/americanbookofdying.htm
here is a very amazing book written by the man i work with just about everyday.
and among many other things, it covers how the different enneatypes live and die
(which i have found to be one of the most valuable insights of all)
and it is written as a toolbook for the laymen
just as much as a book for the seasoned vet in end of life care.
there are also a ton of books and other resources on this site
(which i single-handedly put together, btw...please let me know if you find a glitch..hehe)
http://www.music-thanatologyassociation.com/
also, considering your passion and talent for music
music thanatology is a very effective something i highly recommend
and in addition to a lot of great responses and offerings here
I think Tiki really said a lot of golden things
...like "so it really is worthwhile thinking in terms of living with this condition as opposed to dying from it."
this is so true...i cant say enough, except that more than perhaps anyone, the dying can teach us how to live
even if their dying takes decades
anyway...feel free to pm or email me...or even engage here
even though i am only somewhat of a tadpole in these things
i catch on quickly and am learning a gazillion MPH
and too, if needed...depending on your geographic location, i may be able to help you and your friends locate some quality resources
blessings and strength
+ODD
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01 Jun 2006, 5:41 AM
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tamgoddess
Joined on 01-13-2006
Sacramento, CA
Posts 792
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Re: acceptance of what is
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Jim, please have your friend look into Low Dose Naltrexone, or LDN. It's a great drug that enhances immune funtion that works great with auto-immune diseases like MS. It's an off-label use of a very safe and effective drug. It doesn't matter if his insurance covers it, as the appropriate does is so small, it costs only about 35 bucks/month.
For people with a newly-diagnosed case, it can prevent any new episodes from happening.
With a very advanced case of MS, it won't cure him, but for many people it does stop the progress of the disease. I strongly urge you to look into it with him.
Liz
AFGO
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