Friday, August 26, 2005

The loneliest job in the world?

All hyperbole aside, I think that the job of "cancer-spouse" must be one of the loneliest that there is. In addition to all of the heartache, worry, and grief, there's an immense feeling of isolation. I think that isolation comes, in part, from the nature of serious illness itself; no matter how loving, supportive, and helpful one's family and friends are, there is nothing in "normal" life that prepares one to deal with terminal/serious illness. People whose lives are still filled with the "normal" stresses of job, childcare, friendships, social life, family can't possibly (and perhaps shouldn't be able to) understand the daily anguish: the waiting, the watching for something "new," the helplessness of sitting around while the medical system grinds ever so slowly through its cycle of appointment, follow-up, referral, long wait, test, long wait, results, long wait, treatment.

There's also no way to communicate what it's like to have the most important person in your life drift inevitably away from you--from fear, or pain, or pharmacopeia. I never realized how much of "couplehood" is anticipatory; we spend much of our lives planning ahead to the next dinner party, the next movie night, the next vacation, the dream trip once the kids are old enough. Once the illness is serious enough, all of that goes away, for the most part. Plans are all contingent on the progress of the Disease, and every hope for the future is tinged by the real fear that there won't be time for it to come true.

Finally, serious illness is isolating for the sufferer. Most people retreat into themselves when they are in pain, frightened, or heavily sedated. Someone dealing with their own mortality is unlikely to ask "How was your day?" and be able to stay awake to hear the answer. The minor triumphs and setbacks of the "healthy" partner (although that term is misleading; cancer, in particular, has two victims when its host is part of a couple) pale against the life-and-death issues they face in their couplehood.

Scariest of all is the realization that the only way to have the dreadful stress end would be to suffer an even bigger loss. To return to "normal life" would be to lose one's dearest partner and friend, and to enter a new life of even greater loneliness. Because there's a lot to be said for presence. For even five minutes of conversation. For doing the little things to ease the pain and fill the void, and for savoring the fact that at least for today, we are two who are also one.

Right now, I'm thinking of Badger. And of myself. And of our husbands, whose bravery is only occasionally and by necessity surpassed by ours.


At 3:53 PM , Blogger Badger said...

thank you for thinking of me.

i'm feeling incredibly lonely today, as mr badger seems to have retreated into silence. i feel so out-of-sync with the rest of the world, like i can't tune in to quite the right frequency of other people's lives, problems, joys, plans. it all seems so fuzzy, so distant.

thank you for writing such a beautiful post about all of loneliness, although i sure wish neither of us had this "job."

At 11:56 AM , Blogger ABDmom said...

This was a beautiful post. Sadly, I all have to offer is a hug and good thoughts.

At 1:59 PM , Blogger Yankee T said...

I cannot even imagine. I'm thinking of both of you, with caring thoughts.

At 5:41 PM , Blogger timna said...

yes, the future seems so much more contracted, less out to the horizon. take care.

At 8:48 AM , Anonymous ehj2 said...

Dear Doctor Dorcasina,

I admire you because you pose all the right questions.

I admire you more because you live all the answers.

Please forgive me the days it has required for me to find in my Self these opening thoughts and begin to respond in kind to your poignantly beautiful missive. I have been meditating on your words since the very hour you posted them. I knew I must try to contribute something here, consciously, and deeply. I'm surrounded by notes and beginnings of notes and failed attempts at simple helpful human presence.

In one sense, none of us is qualified to write here and attempt to be with you in this small darkening room. And obviously the words we might write are far too small to carry more than a whisper of the music we long to share and pour without measure into your hands.

Yet in another sense we are all dying and this is the shadow of every life. Each of us must be qualified to write here. Nothing is more perfectly human than to accept this shared experience. And finally, you have invited us to write. Which makes writing under these circumstances a human obligation.

The words are simply what they are; limited, small, bereft ... yet we know we can count on your generosity to accept them as they are, gleaning what treasure you can from the pure intentions behind them. You shared your words without complaint and so we too must come into this quiet place where we are all most vulnerable and share our own small human words.

"The only thing you have to offer another being, ever, is your own stateof being." / Ram Dass

I watched my father die of cancer, and as much as this hurt and continues to hurt, this small fact feels more like a trite coincidence than a credential that might make me worthy of being here and sharing a moment with you. What is deeply significant, however, and perhaps gives us some small common ground of shared experience, is that in losing my father I lost the person in the world closest to me and most like me. I need my mother more, but my father simply was me. Even in my clearest dreams my mother's realm is far too vast to comprehend.

By way of introduction, I am an off-the-chart Myers Briggs INFP. My experience of the world is dominated by continuous streams of intuitions, and I am held fast in a powerful introversion that renders the agora of America as something akin to those swirling globes of snow that one finds in gift shops. I am the tiny figure of a little old man walking in a snowstorm, seeking the still point in the center of continuous movement. So for me it was a living imperative to learn to sort out and interpret the flood of signals that represent the natural continuous language of the spirit and the mind and the body. The incredible compensations of age have included the blossoming of my dreams and shadowy awareness into something approaching dim morning light. The symbols of the world around me are sometimes as loud as reality itself and I must work hard to make the two transparencies fit together cleanly without dishonoring either.

"To a mind that is still, the whole universe surrenders." / Chuang-Tzu

There is nothing I can write that you do not already know. I believe most of our interactions with others are really interactions with reflections of our Selves. In a very real sense I'm writing to me. This is my spiritual practice. My words (at their best) are reminders to me about how I want to be. Jung would say, "Where there is power, there is not love." In the west, we tend to interpret everything from the perspective of power. So Chuang-Tzu's comment suggests to many that the universe is ours. This mistake is made in every fundamentalist religion. It's the notion that by "stilling the mind" or "saying the right prayer" we can have -- out of power and control -- what we want. But Chuang-Tzu is talking about love. The universe is perceived as surrendered because we melt lovingly into it and experience it in perfect infinite connection.

There is a beautiful still point in many of your words and I know you have felt your eternity. While there is very little language for our salient experiences, and little acceptance in this culture for a vision dominated by myth and poetry and archetypal psychology, I will risk sharing from this place, because this is what being present means for me. At a word, I will depart.

We have more than small hints that the burning bush seen by Moses in the desert was within him, and what is described was the energy released as the inner tree of his chakra system opened into higher consciousness. We have more than small hints that the tree of life in our many mythologies is not out there, but in here. The seven lights on the candelabra within the Temple correspond to the seven lights of the inner chakra system in Buddhist mythology.

I saw my father as a Temple and as a glowing tree in rivers of golden light. His integrity was straight and powerful and true, like the massive trunk and branches of a huge tree. And I saw the golden lights and their hold on the cells of his body diminish as he was pulled away.

The moon comes, with her intimations of the realm of the starry night and the entirety of the cosmos. I can feel her music intruding suddenly and frequently as I get older. I weep easily at the smallest things. I go for days connected strangely to everything. I am drawn more powerfully to the ocean and long to be held by her tides. I dream continuously of luminous treasures pulled from her depths.

I want to say that you are not alone and you are never alone.

Even as you know that no one can truly be with you.

American culture is uncomfortable with suffering and want, and uses its technology to ignore suffering and want. Ironically, it embraces
strong "passions" without realizing that passion means "suffering." There's wisdom in this for those that can glean it.

I know I am in a holy conversation and I speak with my softest most humble voice. Angels listen in, offering what help they can. In truth we live our lives in continuous prayer and everything we do matters. Because we don't always feel the cosmos does not mean it ever slips away. Those drawn to power over love become adept at not listening, not feeling, not caring.

Every place is a sacred place. Every moment is a liminal moment. We are always suspended on a Tree of Life, between the heavens and the earth, struggling to make a line so fine between them that we "cut them together." This is why it is called The Razor's Edge.

My father has been gone now for several years. Yet I speak with him almost every morning. He visits with me in my old jeep on my way to work. Accompanying him, always, is another close friend I have lost ... my diminutive partner in crimes and misdemeanors.

One of the reasons I find a clear resonance with Ram Dass's expression above is that it is true across all of creation as I experience it. Brandy and I were inseparable and I was never able to figure out where she began and I ended. All I have is the notion -- and it feels right -- that we are two manifestations of the One spirit behind everything. She spent her life helping me to know it. And she always brought her whole being to every encounter between us.

My father was infinitely more intelligent than I am, markedly more disciplined, and better with people in the small rituals it requires to be with them. And Brandy was simply wiser and a better being than I will ever be.

I could attempt to write how much I miss them -- oh, I do and sometimes cry for them. But it is far more important for you to know how much they are still here, and that they walk with me every day, and that our love never ever stops. At the end of the day, it's their love that feeds me the most.

I hope with my heart that I have offered one useful word or thought. Half of all I do is in honor of a Truth expressed elegantly and perfectly by Mahatma Ghandi, "Everything we do is futile, but we must do it anyway."

With love and respect and a soft clear prayer that these words and hopes find you well and at peace in the still point of your swirling snow of lights and soft golden dreams.


p.s. i have posted this text with images that assist my expression of these thoughts on my own site. as always, if this is in any way inappropriate here, please accept my apologies and delete.

At 2:44 PM , Anonymous Flippy said...

That's one of the things that makes the internet a place of comfort for many people. In the lives of you and Badger, for instance, those of us out here only know your thoughts. We don't know your spouses, so while we feel badly for them, our concern and thoughts generally revolve around the "healthy" spouse. I know that cyber friends and thoughts aren't a replacement for in-person relationships, but I hope that it alleviates the loneliness, even just a little.

At 7:33 PM , Blogger feminine expressions said...

i would that i could carry your pain for at least a moment, to grant you some relief. your courage is exceeded only by your loveliness.

i learned only two hours ago someone dear to me is pronounced with cancer and a serious kind. but your light shines to me, making me feel less alone.

my prayers, my wishes, my love goes out to you...

At 12:56 AM , Blogger The Blah Brain said...

Hey would you like to trade links with me? [I place your link on my site, you place mine on yours] I have over 20,000 hits a month on my blog - just post a comment if you're interested and I'll gladly put your link in my blogroll on the sidebar! Thanks, Paul

At 6:44 PM , Blogger Supa Dupa Fresh said...

Heavens to Murgatroyd, you've been a long time without a post. I was working through yours, but lost the link to an archive. Now I'm trying to read the whole story through. This post reminds me so much of what I just wrote -- and it took 3 years to get the strength up --

Thank you for sharing your experiences so beautifully!



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