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September 7, 2011

Before I begin this post; one of my friends mentioned to me that when she clicked on the “new post” link in her e-mail notification, she didn’t have access to comments. This is too bad because there has been some very interesting comments from readers that add much to the discussion. She has since worked around this glitch by entering my blog address into her address line and this gives her all comments. I’ll look into this to see if there is a better way … but if you are still having problems, please let me know!

I made a commitment to myself when I started this blog that I would be honest and open. Like many of you, I am now very aware of how little exposure there was in my life regarding death and dying. Not only did I avoid this subject myself, but so did my culture. Other than a few inspired groups, like the Threshold Care Circle or Hospice, this natural part of life continues to be delegated to the gloomy fringes of society where it exists in an almost fictional reality. Yes, we all vaguely know we are going to die someday, but we tell ourselves that this is reserved for sometime in the distant future when we cease to be who we currently are. I -this person who now inhabits this body- will not die because … well … I am too much alive for death to catch me. Besides, death is an ending and endings have nothing to tell me about living.

But this is wrong. I am learning each day just how much death is teaching me about life and living, and I only wish I had taken some of the lessons I am learning now into my life in earlier times. Far from being an ending, I now see death as an opportunity to distill life down to it’s most essential form as I move toward a new beginning. I have decided that the best way to be fully awake to this journey myself is to document the experience as I walk through it. This fulfills two things for me: 1) It is a creative outlet, and I must be fully present to my current experiences and thoughts in order to share it, and 2) it gives me some purpose that provides the needed meaning for me to go on living. I have come to learn that others are benefitting from my journey too, and this keeps me company as we walk through this together.

The greatest challenge for me so far has been to let myself be vulnerable and allow people to give to me. Vulnerability can be seen as a weakness, as if a fully functional person has no needs, faults, or deficiencies. Exposing my vulnerabilities means risking whether who I really am is enough. Yet, it is by exposing my vulnerabilities that I become truly accessible and -therefore- a part of everyone else. Receiving from another person means that I believe in my own rhetoric stating that this closes a circle of love … receiving being the twin sister of giving. Receiving from another person also means to believe in my own rhetoric that “earning”  has nothing to do with true love … we all deserve to receive love as well as to give it.

Up until now, this vulnerability thing has not been too much of an issue because I have been physically doing pretty well and not needing much … but this seems to be changing. The last few days have created a new benchmark for me, and I realize I have lost more of my natural capacity than I care to admit to myself or anyone else. My body is continuing to narrow down my prospects, and my job is to keep abreast of what ways this is happening so I can adjust to it. Part of this adjustment is to mourn the new loss and try to surrender to it so I can move on and experience joy in what I still have. After a lifetime spent learning to become an independent and giving human being, it’s sobering to realize that now I must learn to trust that it is okay to need.

So I am thinking about giving and receiving. Traditionally, giving has made me feel useful, given me purpose, and has also given me respite from my own problems … especially giving others my full interest and attention. My reward is that through this active presence with another person, I can be filled with another persons story. Ideally, this giving would be reciprocal and a good friendship nurtured and formed. It’s obvious that for this circle to remain unbroken there needs to be receiving as well as giving. I mean, this is pretty fundamental stuff … so fundamental, in fact, that most of us pay it little attention; and without our “attention” we fail to realize just what we are really holding back in order to protect our vulnerabilities, which only make us lonely. We in essence protect ourselves from deep connection, and from true love out of fear of being acceptable. How sad! Much sadder than this illness of mine. This sad fact has certainly been true for me at times in my life too, but the dying process is my opportunity to let go of any expensive facades and surrender to who I really am, and to trust that the people I love will still be there.

In the meantime I have realized that, although I started this blog for myself, one of its deep satisfactions for me is in the sharing. This is not so different from my art … my photography. I went into the field for myself in order to commune with nature and to participate in and mimic nature’s creative process by using my camera. This was very satisfying in itself … it focused me, it brought me into the present, it preoccupied me, and it broadened me. Yet, the completion of that process was through the sharing of my experience with others. Another circle closed. Giving and receiving.

Up until this point I have let people know what it is in terms of response to my illness and death that I want. I haven’t wanted sadness or grief around me (and here I am opening myself up to the shocking possibility that you all are actually relieved that you won’t have to endure that stupid facsimile for humor in me for much longer … hmmmm, see what I mean!). This makes things easier for me if everyone around me is happy and fully alive and engaged, but this no longer seems fair; I can’t expect this from Peg or my siblings or very close friends, nor does it fit with my wish to be honest and open and to fully share this experience and this journey. So to close another circle of give and receive, I would like to hear from you.

Many people want to let us -the dying- know how much they “feel” for us and our loved ones; but other than that, most don’t know exactly how to respond or what to say. This, I suppose, is due to the fact that everyone is different and responds to a “close” death differently. It should be obvious by now that I have no problem at all dealing with my own death … even to the point of irreverence, so no one should worry about offending me. This would help me understand what you are thinking and feeling and allow a more open and honest discussion about this blurry subject, which -afterall- is much of the reason I am sharing my journey in this blog.

So what do you say? You can share your comments with us all by doing so on this blog; or if you have a personal note you can let me know via e-mail:

Lets bring this subject out of the cellar and into the light of a beautiful Autumn day … like today! Do it to give something to yourself, and then close the circle by sharing your thoughts and feelings with the rest of us. I want these to include what you might want from me. I mean that! I’m not dead yet, and so the circle still needs closing … even for me.

Also, I might suggest that you avoid being as long winded (even without most of my right lung I might add) as I am so that none of us get overwhelmed with too much reading and avoid it altogether. Choose something you might want from me, or an aspect of dying that concerns or interests you the most and try to keep it to one short paragraph … or even a sentence. I am not looking for beliefs or philosophy here, but gut concerns, feelings, and questions. As I mentioned in another post (if I am any example) I am getting less and less interested in cognitive constructs of life and death and more interested in what is really going on inside myself and others.


20 Comments leave one →
  1. Laurie B permalink
    September 19, 2011 2:25 pm

    Your post struck me,Rick as the next breath in the giving and receiving that is the mystery of ‘life’ – from the cellular level: a single cell receiving oxygen and giving carbon dioxide; to the food we receive and giving fuel back to us; to our human ‘givings and receivings; to the earth as is receives sunlight and gives life. All is breath.

  2. Gingerlily permalink
    September 12, 2011 10:10 am

    Dear Rick,
    You have captured Heaven so often in your photos, as you prepare for lift off, I wonder what of this world you wish to carry with you in your heart? Photos of your beloved Peg, your family, the view from your favorite chair? Or perhaps pix of you tending your bean sprouts or whatever the common activities may be that chronicle your life….. Unless, forgive me, as I don’t know exactly how you are physically.

    As you rejoice in the now of life on this planet, because you are at peace with your journey, you have a vision of hope and wonder to share with others who may be struggling. I wonder if you ever have a chance to gather with others on the hospice journey and share your wisdom? If not in person, perhaps a blog you could link with? Singing can be a good way to exercise your good lung. I remember you singing while playing guitar …. it brought joy to many.

    Thank you and Peg for your hearts and practice of True Love,

  3. Zeba Due permalink
    September 11, 2011 4:10 pm

    As I read about your impending death Rick, I embrace my own death. I have been afraid to feel the sadness, associated with cancer, but given yours and a close family members deterioration with cancer I’ve been lead to Pema Chondron’s book “When Things Fall Apart”. I’ve covered up my fear of death with the bussinesses of life, with chocolate, ice cream, clothes, possessions, etc. etc. I’m now choosing more often to be with “uncomfortable”. Thank your for educating me on how to approach you. I’m not skilled in this new way to be.

  4. Anacker Faith permalink
    September 10, 2011 4:26 pm

    What I need from you Rick – is for you to be exactly who you are and do exactly what you want to do!

    You are a gift and your kindness will stay with me forever!

    This blog is a great service to our community, Thank you all for sharing, I feel more connected to you as I recognize our similarities. I’m wanting to respond to each post with yeah, oh I know what you mean, Oh I am so glad to know someone else feels the same way I do….Very affirming!

    Rick, your experience caused me to think of my own asbestos exposure, and how common an occurrence it is. My fear (of my own death) is that I will have not “undone” any screw ups for the future of my family, as you have spoken about – releasing the baggage, clean up messes for loved ones before I pass.
    To me death is a gift but preparation is a good thing. I am thankful that I have some tools to help me in my preparation. Mainly to be sure I do my best in relationships & have integrity in my word. Knowing that there are people in the world who cared enough to know me, on a soul level helps me to feel prepared as well… If a person went through life without ever exploring or sharing them self would that not be a waste?

    Coming to know myself is by far the best thing I can do.

    I personally feel a responsibility to inform those who have not had the same educational opportunities as I that they have choices and what those choices may be.
    We humans have altered the balance in nature and all suffer for these destructive acts. Contaminants are everywhere, and being that we are all connected we are all sick.
    Feeling the anger, hopelessness, rage etc… for the ignorance of “progress” is natural. Is this anger not what sparks change?
    You observe how we protect ourselves from deep connection, a subject I have given considerable thought, part of this also has to do with the toxicity of our environment. Notice how present an Amish person is when you talk to them.
    I go back and forth on this, seeking balance in where my attention goes. What shall I/we leave behind? What defines me? How can I best be of service?
    Thanks Rick
    I belong to you!

  5. dick and marty permalink
    September 8, 2011 7:35 pm

    Dear Rick, I remember the first time I met you and Peg. It was an early spring day at a local art fair in Viroqua WI in the early 90’s. I signed up for that fair because I believed that I would be the only exhibitor with fine art and would clean up with the purchase awards. Things looked pretty good until the 2 small cars pulled up loaded with art fair material, you, Peg and some of the most beautiful photographs I had ever seen. You made me change my opinion of all photography. The skill and patience in which you study your subjects and capture them is without equal.
    That day we discussed the world of art fairs and how they would improve if they let us do the organizing. How government would flow smoothly if only they would listen to us. That day we made a friend.
    We proved that a vegan and meat eater could co-exist without animosity as we wish the rest of the world would do the same.
    I look at the one photo I have that you did and see all the beauty you are able to coax out of a few leaves. Marty and I both cherish the time we spent with you two as few as they were and we will always be proud we know you.
    Your art will be seen in various places for many years and bring joy to anyone who sees it. As John Wayne said “courage is being scared to death but saddling up anyway” Rick your journey ain’t over till it’s over. Always Dick and Marty

  6. Jo Stothard permalink
    September 8, 2011 5:02 pm

    Thank you Rick. I only mentioned the celebration of life, because it seems most of us want to see you! And I would prefer to do this, while you are still with us… although I guess some people have one, instead of a funeral service……. but what do I know?

    I too, do much better one on one.
    Your offer to meet for lunch is very kind, thank you!

    I am not sure, but I think I may be farther away than some. I would love to meet you in Spring Green or I could make a day of it and come to Gays Mills, whatever is best for you. Pick a date…….I can do this, on pretty short notice, whenever you are up for it. Sept 20th- 26th and Oct. 5-8 I have things I need to do. Keep me posted.

    I hope that you will be able to make the WAF in Madison! If you are not able, I am very sure your fees will be returned.

    My thoughts are with you and Peg everyday.

    PS I have really been enjoying you and your friends postings. They are
    very insightful and I find them helpful, as I have seen too many people I know and love, pass in the last few years.

  7. Mokasiya permalink
    September 8, 2011 4:45 pm

    Vulnerability, oh yes, the tears flow, all on their own, my mentor died of cancer when i was 13 years old, i felt him last night, i did not sleep much, feeling and thinking about your words rick. No talk about death back then or about cancer, just have faith was all that was said, or, he is in a better place now, i felt so cheated and angry that he left this world back then.
    blessings to all on the journey,
    thanks for the song Charlene

  8. September 8, 2011 3:47 pm

    You know I don’t want much. You are just great as hermit, James Bond kind of mystery, artist riding above the clouds….

    You could do me the favor of reading my latest poem…which I think of as a great imposition on you, but since you are asking… and I think you are seeping into the verse, little by little.

  9. Jo Stothard permalink
    September 8, 2011 3:30 pm

    Can’t keep the tears back……sorry.

    ” I want to do something to catch you before you leave…..maybe just hold your hand”.

    Rick, have you thought of having a celebration of life….get together. I am not sure what they are all about….but it would be nice to see you again.


  10. Edie Ehlert permalink
    September 8, 2011 11:33 am

    Rick–Thank you for sharing so much of your thoughts and feelings. Your acknowledgement that you now get to receive and be vulnerable as well as giving to the rest of us is so essential. When Glenn died, the gifts to me were so full and gracious and spontaneous. I never questioned it–like, did I deserve such love and support? It really is so that giving and receiving are all pretty much the same, that circle.

    Your are in my heart and thoughts daily.

    And by the way, I will miss your humble and dumb ass humor always–it is such a delight.

    Love, Edie

  11. Lynda Schaller permalink
    September 8, 2011 11:33 am

    When I am most deeply experiencing grief, that is when my awareness of the astonishing beauty of this world is sharpest. It is piercingly, heart-breakingly beautiful. Great loss brings me fullest experience of life’s gifts. This week I stumbled around the fields and woods, gawking at the sky and trees and spider webs through the blear of tears, tears for you, then also for those who have preceded you and for dreams unfulfilled.

    At a recent meeting, involved in a difficult interaction, I realized that you were not in the room to help sort it through. I felt your absence, missed the ballast you provide even when you don’t say anything. With a jolt, I realized you will not be here in the future as ballast, as physical presence. “Damn! We’re gonna hafta learn to do this ourselves!!” Because of that, and because of so much more, I felt a trap door spring open beneath me. I also knew . . . we can do it. It will (does) hurt like hell, but we can do it. And the awareness of the beauty takes the “hell” out of it, or balances the “hell” with “heaven,” for me anyway.

  12. Lynda Schaller permalink
    September 8, 2011 9:59 am

    Giving/receiving . . . yin/yang . . . it all mooshes together.
    When a person receives, they are also giving the opportunity for another to be generous.
    I grew up with the weekly Sunday a.m. injunction, “It is more blessed to give than to receive.” (That was said right before the collection plate was passed around!) Hooray for everything that counters the humiliation our culture has conferred upon being in the “needing/receiving” position in the dance.
    There’s the story about the difference between heaven and hell. In both places, you don’t have elbows and so can’t bend your arms to put food into your mouth. In hell, you are starving and miserable. In heaven, you are feeding each other. We really do exist in situations where we don’t have elbows, and we need to receive. Let’s work toward making that a neutral, uncharged fact, and taking delight in the fact that our neighbors have elbows.

  13. Lauren permalink
    September 8, 2011 9:55 am

    Rick, I don’t think I’ve ever mentioned to you that I am a huge fan of Tolkien’s Lord of the Rings stories. I’m not sure if you are familiar with them or not. But in them, there’s always this underlying story about the elves sailing west to the blessed realm, and years after the end of Frodo’s long journey to destroy the evil ring of power, he is granted special passage on the last ship leaving Middle Earth. Here are the lyrics for a song that was written for the film, sung by Annie Lennox. I wanted to share them with you. It’s a beautiful song with a full orchestra playing the music behind her haunting voice, I’ll play it for you sometime.
    “Lay down your sweet and weary head, night is falling, you’ve come to journey’s end.
    Sleep now, and dream of the ones who came before. They are calling, from across the distant shore. Why do you weep? What are these tears upon your face? Soon you will see, all of your fears will pass away. Safe in my arms, you’re only sleeping. What can you see, on the horizon? Why do the white gulls call? Across the sea, a pale moon rises, the ships have come to carry you home. And all will turn to silver glass. A light on the water, all souls pass.
    Hope fades into the world of night, through shadows falling, out of memories and time. Don’t say we have come now to the end. White shores are calling, you and I will meet again. You’ll be here in my arms, just sleeping. What can you see, on the horizon? Why do the white gulls call? Across the sea, a pale moon rises, the ships have come to carry you home. And all will turn to silver glass. A light on the water, grey ships pass into the west.”

    I’ve been listening to this song lately, and reflecting on how we are all on a heroic journey, perhaps not as dramatic as Frodo’s to save the world from evil, but a journey none the less. And like you, I believe the journey doesn’t end with death. I take comfort in that, and in songs like these. I admire your bravery and courage in facing each stage of your journey, and for sharing it.

    I won’t write much more. Only that I hope to spend more time with you, continuing our conversations. And yes, I feel sad at the thought of you passing out of this realm where our conversations happen. And I want to call, or stop by, or help in some way. But I don’t want to overwhelm you. Just know that you are in my thoughts a lot.

  14. Patti permalink
    September 7, 2011 10:08 pm

    Sharing your journey with such honesty and fresh insight is the ultimate gift. Please, keep this coming as you are able. Let us friends know if we can alleviate some of your and Peg’s financial hardships by a benefit or sending money or whatever else that could be helpful as you do this journey.

  15. Rebecca Wainscott permalink
    September 7, 2011 8:48 pm

    beautiful Charlene, thank you. Abd thank you for the request for someone to start organizing care, it is time, and needs to be someone other than Peg.

    Rick, re:death, ie my own, I’m nowhere near ready to look fully at what that will be, how it will play out, what that dance will look like, how it will feel. I have started to take a few very small glimpses, as I wait for my mother to die (she’s 86 and kicking), watch others I know and love (you, Anita, Mike) as they find themselves all too suddenly facing this doorway to the unknown. I did just recently try to imagine leaving my daughter and possible grandchildren. Even with the thought that I will live into my 90’s, it’s impossible to stay in that place for very long.

    My request, apart from wanting to see you before you go :), is, if you have the energy for this, to work at putting together a book of your photos and blog entries. Call it My Journey Home. Take it as far as you can while you’re here, and let us see it published, for Peg, for all of us, for everyone who is facing their own or a loved one’s death. Truly Rick, I think it would be the most beautiful gift you could give, and one that could touch millions.

    All my Love and Blessings,

  16. September 7, 2011 7:58 pm

    Mokasiya, you have inspired me to share this song that expresses how I feel – it’s called Before You Leave, written and performed by a young singer songwriter from Minneapolis.

  17. Mokasiya permalink
    September 7, 2011 6:57 pm

    Dear Rick, What i want from you is love, unexplained in words, unconditional in life and death and breath of heart. What is death, a new beginning an ending? And what about grief? Can we allow space for each one to share grief, or in our bold approach to be happy we attempt to skip this part? Circle open, Circle closed, Circle opens again, moving to the edges of the pond.
    Oh! letting go, holding on. What i want from you Rick is to sit beside you and touch your hands.

  18. September 7, 2011 6:49 pm

    So relieved to see your post today, knowing that an independent person like yourself will have to, at some point, face dependence as part of your journey toward death. There can be no givers without receivers, and if you allow me to serve you in some way it is a great gift to me. I don’t know whether to call or email, I don’t want my presence to be a burden to you in any way, or for you to feel that my request to serve is a demand for a piece of you. I’m afraid if I leave the ball in your court, you won’t call or let me know what you need, I’m afraid I’ll be a pest if I insert myself. Could you appoint one person (not Peg) as a liaison, to give a list of what is needed by you and by Peg, who can then coordinate? It is not too soon to put something like this in place. Your community so wants to support you.

    I love you, and I fully expect I will feel your presence after you go, guiding me with my book.


  19. Judith permalink
    September 7, 2011 4:28 pm

    I recently saw an interview with Paul Simon about his turning 70, I believe, and he mentioned he works alot at not being pissed off that he’s going to die.
    I was happy to hear that. I’m pissed off alot that I’m already 65 looking at 66, and , thus, so much nearer to death. Then, someone I know and love, even younger than me, writes to tell me he’s actually sure he’s in the process right now! So, I’m invited (once again) to realize- so am I. And all the “usual suspects” show up to protest and vent: YIKES! (fear); NOPE (denial); Oh, No and NO! (sadness and anger); WOW ( a little bit of curiosity and exploration); OK (resignation); HELP! (more fear, denial, sadness,anger, curiosity, and resignation combined).
    Thanks for inviting the sharing, Rick. That’s all I can write right now.
    Probably because I began with Paul Simon, what’s “planted in my brain” right now is”Hello darkness my old friend….”

  20. September 7, 2011 4:21 pm

    Rick..I so appreciate your unflagging honesty! So, here is where I am: I am very sad that this is happening to you, dear friend, even being the ever optimistic 7 that I am. It sucks and I won’t pretend otherwise. It is not “fair”, whatever that means. I believe it is just that I know I am going to miss you deeply on this physical plane, even though I do know that you haven’t really gone anywhere. You are such a precious being and I am so sad to know that likely I won’t be able to see you, touch you, talk to you, etc. much longer. AND, having said that, please know that I am totally open to miracles!

    And I am mad…mad that I can’t do anything to change this. It is totally out of my control and that makes my ego mad. Finally, I want to GIVE to you. What do you need or want right now? Give a call at 637-2451 and I will come running, OK? I am serious. I love you dearly and want to provide whatever I can to make you comfortable, happy, and serene as you face this transition.

    Much love, David

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