Musings: living with pain | Arthritis Information

 

Musings: living with pain

 

I’m reading a book called, “Turning Suffering Inside Out”, by Darlene Cohen.  The author was recommended by someone on this forum about a week ago…don’t remember who, but it was an excellent recommendation.  Darlene has lived with RA for a long time so her words have a great deal of authority and conviction.  I’m not that far along, but am already enjoying the book immensely.  I though I would share a short excerpt.

 

“We must penetrate our anguish and pain so thoroughly that illness and health lose their distinction, allowing us to just live our lives.  Our relief from pain and our healing have to be given up again and again to set us free of the desire to be well.  Otherwise, getting well is just another hindrance to us, another robber of the time we have to live, another idea that enslaves us, like any other achievement.  Fortunately for our ultimate freedom, recurring illness is like a villain stomping on our fingertips as we cling desperately to our healthy, functioning bodies.  Healing ourselves is like living our lives.  It is not a preparation for anything else, nor a journey to another situation called wellness.  It is its own self; it has its own value.  It is each thing as it is.  We live our lives to express our own sincerity, our own nature.”

 

I really struggled with this concept at first. How can I give up my desire to be well?  How can that desire be a hindrance?  But finally I think I get it.  My obsession with fighting my illness and getting well can rob me of the ability to experience my life, which only happens in the present moment.  When each moment is over it’s gone forever.  I don’t have to achieve “wellness” to be able to find some joy in each present moment…or to experience sorrow and loss; at least it’s real and not some fantasy that might be unachievable.  There is hope in the present. I don’t have to reserve my hope for the future.

 

I hope you find peace and joy in your life,

Alan

Alan, I understand and admire the wisdom in this concept, but somehow my mind and heart still try to be well. I know it will never happen, and I do have a lot of joy in my life, but to hope is something I have no control over.

I try to just accept my life as it is and make it the best life I can have. I have just had to give up so many of the little things I used to do that brought me peace and comfort. Like gardening, embroidery, crocheting, and other fine hand needlework. I also can not longer paint, play guitar (I've given my guitars to my daughters), get on the floor with my 2-year old granddaughter and play. My darling husband and I can't just pack up and take a trip to the tropics, like we did before. We have to plan much more carefully to do anything.

I guess I still grieve for the old me, which has never been completely healthy, but I was able to "do" and create. I miss feeling productive each day. Not necessarily "work" productive, but artistically. It's in my heart with no way out.

I honestly think I've made strides, in that I have accepted that I won't be able to do most of these things again in my life, but at times I still mourn the loss. However, I still grab hold of the joy in my days. My family and home are so precious to me, they remind me that I have not lost everything and still have reason to be thankful.

Thanks for listening. I was able to write these things without any tears. That is a positive step for me.

Your insight and poetic soul are always a comfort.

Be well,

Nini

 

Hi Alan,

It was recommend by me.

Listening to Darlene's talk which can be downloaded from the internet and her articles and books, helped me and still helps me immensely so I just had to pass the info on. I have also used a lot of Buddhist principles, Darlene is a Zen Buddhist layperson, to work with the grief and pain of RA. And I think Buddhists are the best teachers of meditation in the universe and I do believe we can use meditation to lower our inflammation levels and generally cope with the pain and suffering we experience.

The principles of detachment that is the basis of Buddhism have so helped me. Not to give up the desire to be well to face what we have to, to cope in the now.

Darlene has done the hard yards over many years. For the first year she was bedridden and had a three year old son.

Glad you are enjoying the book, Alan and that Darlene's work is helping you.

For anyone who didn't get the information before, Darlene's talks and articles can be downloaded at these two sites. Her site also has some written articles that are very good. And she has written several books on RA and coping.

http://www.audiodharma.org/talks/DarleneCohen.html

http://www.darlenecohen.net/

Nini,

Thanks for sharing!  If it's in your heart it will find a way out. We tend to underestimate the power of a life well lived, and how it can influence those close to us.  Your granddaughter will grow up seeing you as a powerful example of how to live graciously and even joyfully in the presence of pain and suffering, how to persevere and find victory in the things that really matter.  I think that's a wonderful gift that will give her strength to face an often harsh world.

Cordelia,

Thanks for the recommendation!  I don't like "self help" and pop psychology / spirituality books in general, but I love reading books written by people who share from their own experience like Darlene.  Another author I'm sure you're aware of that I really enjoy is Thich Nach Hanh.  I'm reading his poetry in "Call Me by My True Name".  His words have a lot of power based on his own experience of pain and suffering in Vietnam during the war.  I've been reading one of his poems each morning...it helps me keep my life in perspective.

Alan

Alan39292.7540162037I know Thich Nach very, very well. His were the first Buddhist teachings I came across. Anything he writes is uplifting and inspiring.

Glad Darlene is being enjoyed, she is good value.

This sounds like a great book for those with limited pain.  I know many here can exercise, go to work etc. which is wonderful and I know this book sounds like it can help.

But, for those with chronic pain, I hope there will someday be a book for you that might help you to learn to put pain aside to enjoy life even if it consists of sitting in bed and reading a good book or watching television.

For me, the book may not help, but I still think it is a great idea.  I sometimes struggle with rolling over in bed, walking 3 feet to the bathroom etc. so trying to get this sickness out of my mind is very hard to do as the constant struggle with pain is not easy to forget.

But, I honestly think this is great for those with limited pain and hope it does work well for you.

I found this very interesting Alan, I will be reading more.

 I am sorry Bubbagump that you are in so much pain.  I guess I would still consider what I am experiencing as chronic pain.  I do work, in pain, everyday.  It is never out of my mind, since I feel it all the time.  I don't think I ever forget the pain.  I hurts to get up, get dressed, drive, teach and sit. 

It is at a different level than what I feel right after major surgery, but sometimes I think the "chronic" part is even more difficult than the intensity.  After surgery my mind at least knows that it will get better.  I don't expect to be able to move much or do much then.

 I find it very stressful to know I have to work, clean house or run errands when the pain is constant, sometimes I think that actually makes my perception of pain different.

OK, I will stop being philosophical and go take a hot bath and go to bed.
Bubbagump,

I am sorry you are in so much pain too, it so gets you down. But here's the thing...I don't have limited pain or unlimited movement either and this stuff really helped and continues to help me regardless. Today, I hurt all over, can barely move, my hands and body are crippled and I can't stand up straight.

And that is what I love about Darlene, her work and her experience. She has had RA for about twenty years now. For the first year she was bedridden, then for many years afterward she struggled just like we do and eventually found her relief through a movement program that she created. That was her way. I am not saying it is everyone's.  She knows...about not being able to roll over in bed or walk three feet as do I. And you would have to read or listen to a good deal more than that excerpt from Alan to get what she is talking about because these are not easy concepts to get our minds around when we live with what we do. In her talks too, she deals a lot with the grief, loss, anger and depression we each face.

I have no choice over how sore, stiff and crippled I feel and am today but what I do have a choice about is how I respond to that. On one hand I could choose misery or I could choose to accept the lot I have today and get on with life regardless, now that is not always easy but can be done. It is a mental shift that is possible for us all and the way to it often is first to accept what we are dealing with. Sometimes, I will walk around when I am alone and feeling angry with the RA and say, "Well, this is what I have. My body hurts, I am not sleeping. My house is a total mess. I am tired. I'm hungry and can't get anything to eat. And this basically sucks. This is it. This is what I have."

Something about doing that kind of process helps as there is no denial in that. And I have always found that after being at that place, I then find my way through, things change, suddenly I can see answers.

Hang in there, Bubbagump. Whether or not Darlene's work is for you or not, hang in there.
Cordelia,

I will definitely have to get this book.  I know that our mind and our attitudes really affect the way we feel.  Or it could be that the other way around.  The pain is there and I would like to find other ways to deal with it.
I think it all depends on what you choose to focus on.  I know it sounds kind of simple minded, but there really is something good in everything.  Even suffering let's you appreciate the good days in ways that you might have missed without it.  No one knows what's going to happen tomorrow, but I think maybe with RA, you know that more than alot of people know it.  Makes today seem more important and more worthwhile and much more appreciated.  I can't say that I liked my four months down, but I can tell you with complete honesty that I learned  a lot of things that I am thankful to God that I know now.Mary, remember you can also download her talks to your computer from those sites I gave and the articles from her site. Once they are downloaded, they can be burnt onto cd or put on an mp3 player. If you are not computer literate in this way, maybe someone in your family is.

I think we need all the tools we can get to manage the pain and other stuff we go through.

And Linncn, it is basically simple minded in a way. I don't mean it is so rosy fix it routine, they don't exist but I have found this philosophy has brought me strength amidst the chaos of this disease.

And being a writer, I am an information junkie, investigator and researcher. If there is info to find, I am pretty sure to do so but I have found very little on personal RA stories and they really do help us to read and hear others stories.

Another story from Darlene's life...

She was in so much pain that when she got out of bed first thing in the morning she could barely walk and all the way to the bathroom she would groan to express her pain and discomfort.

He husband (2nd hubby, they married after she got RA) and son told her they found this morning ritual of her groaning upsetting because they couldn't help her and it made them feel sad to hear her in agony.

So after a family discussion, they decided upon a solution, son and hubby would join in the groaning every morning with her and they did. This solved the probably for her family as they were participating in the process.

Interesting, huh?
Cordelia...that makes me think of when chemo patients lose their hair and their friends/family all shave their heads.  Ever hear of people doing that?  I love that kind of compassion, it makes you get all choked up.Yeah, I have Linncn, it is very similar and chokes me up too. And a very cool way for a family to solve a problem together. It really does help to look outside the square.  Thank you Cordelia,

Luckily, my husband is a software engineer and I can have him figure it out.  Of course, there are times when he thinks that I married him simply for his computer skills, but I think he is joking. Mary,

I think hubby can help then, darl. I am sure he has more going for him than computer skills but I am glad he will work it out for you.

I am a girl geek so I tend to think everyone knows how to do this stuff and I suddenly thought, maybe that would be more complex for you than for me.

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