Posts Tagged ‘suffering



07
May
10

what could have been

I’ve been reading a new book by Kathleen Norris called, Acedia & Me: A Marriage, Monks, and a Writer’s Life. Ms. Norris is a highly acclaimed poet, and author. All of the words in the title of this book are appealing to me, even the word acedia, and that is because I had no idea what it meant. Acedia, I am told, is a state of spiritual listlessness, sadness, melancholy, apathy, carelessness, and lethargy—a pathway to sloth. Originally an affliction among the monastics and religious, it was considered to have the potential of undermining faith and sensibility. It differs from clinical depression in its spiritual orientation, but can be the precursor of depression.

After the first several chapters I came to see the funk I’ve been in much of the time since adopted daughter’s death, as acedia in varying degrees. This definition stops my free-fall state with a safety net of insight. Like a person ill for years and finally getting a diagnosis that it is not “all in the head”, I feel relief. The book is dense with messages for me on all levels of my life—from aspects of faith life, to matters of creative work, marriage, illness and death, I am infused with new insights to my own shadow side.

In the last few chapters of the book, Ms Norris shares the story of her husband’s illness and death from cancer, and her experience as sole caregiver, that got my heartfelt attention. I identify. That’s me in both places: cancer patient and caregiver. Her account of care giving, both during her husband’s illness and after his death speak loudly to me. I’ve been there. I know. I’m still there.

It has been 9 weeks since adopted daughter died. Not really that long in grieving terms, but my grief has a twist to it. As executors of the estate and caretakers of all things left behind, we have been stunned to find shelves and shelves of her life that she did not share with us—did not share with anyone. In fact, we see that she lived her life in serial compartments, like an old-fashioned rolltop desk. There is a quotation my mother would offer about not letting your right hand know what your left hand is doing. This could be applied. The problem is that the original comes from the Sermon on the Mount (Matthew 6:3) and is a moral directive to giving, not hiding.

What I have seen is a person I loved dearly enough to call daughter, who didn’t trust me, or anyone else enough to confide the many truths of her life that would have made the executing of her estate a far less messy and painful affair. But more than this consideration is that the love and trust she did give me was the best she could do. That says volumes. Hidden until the end. Every time she called me mamacita, she did so with the half she felt would not be rejected. “I would have loved you anyway’, I say to her memory. ‘I would have loved you and helped you make the crooked as straight as possible in the few days and weeks that were left”. If she were anyone else, I would be speaking philosophically and with a bit of distance, but because I took her as a daughter, I speak with the pain of not having been able to do all I know I could have done for her. This is a tragedy to me. Although I witnessed God’s redeeming forgiveness to her in those last few days, and know Grace was given completely, I feel a mourning for what was left out between us. I would have liked to give her the human forgiveness she was sure she didn’t deserve. But maybe in her morphine altered days, she knew it was there, and maybe she made that transaction in the shadows of her heart and soul…maybe that’s what I saw in her face as I administered the meds hour after hour with more tender love than I thought I had in me to give.

So what is the problem? Why does acedia haunt me like a child playing hide and seek in dress-up clothes? I don’t know. I am beginning to think that acceptance, letting go, and letting be is my spiritual discipline forevermore.

I hoped that by the time I finished writing this post I would have pushed through acedia, at least for a time. The estate is not yet settled and my personal sense of mourning for what could have been is not over. I do not have the sense of adopted daughter’s presence as I did with my sister after she died. I cannot explain this except to say that she never allowed herself to belong to anyone. Despite her promise to learn to hover in our lives, she does not. Perhaps there is a learning curve in the afterlife. Perhaps we are connected by this curve…she over there and me over here. Perhaps there will be a happy ending when my soul finally floats free.

Postscript: The deceptions we keep in our lifetimes may very well come to light after the funeral when there is little that can be done to alter them in any way.

13
Mar
10

one week later

Saturday, March 13, 2010  —  I wake up to a dream I don’t remember, but feel sad and helpless.

One week ago adopted daughter, Bettina Ortiz, died at 2:15 p.m. with her nurse and adopted family around her (see Holiness, March 9). She had slipped into a coma during the night. I had been in a psycho/emotional coma equally as long and longer. We did this together. It was a natural ending to the team work of Tina and Mamacita. Yesterday her ashes arrived in the bronze container I chose, and she approved, on the preceding Wednesday. This engraved, bronze box is now sitting on the floor where her bed used to be…next to my sculpture called Innocents, for the victims of 9/11. The box will stay right where it is until I can think about what to do next. She said I could do anything I wanted with the ashes, but that she wanted Frankie’s ashes added to hers. (Frank was our nearly 20 year old cat who slept with her toward the end, but died two weeks before she did.) We will do that…later. Today we tend to unraveling and settling the affairs of her estate.

My unremembered dream stays with me as sadness. A recording of Jacqueline Du Pre  playing Haydn and Boccherini pours out from the living room. This is music I listened to and lived with while I was sick with cancer in 2006, just across the street from adopted daughter…also sick with cancer.

All this week Richard Rohr’s email meditations dealt with Suffering. Today the meditation is adapted from Things Hidden: Scripture as Spirituality, p. 25:

Pain teaches a most counterintuitive thing—that we must go down before we even know what up is. In terms of the ego, most religions teach in some way that all must “die before they die.” Suffering of some sort seems to be the only thing strong enough to destabilize our arrogance and our ignorance. I would define suffering very simply as “whenever you are not in control.”

If religion cannot find a meaning for human suffering, humanity is in major trouble. All healthy religion shows you what to do with your pain. Great religion shows you what to do with the absurd, the tragic, the nonsensical, the unjust.

If we do not transform our pain, we will most assuredly transmit it.

If there isn’t some way to find some deeper meaning to our suffering, to find that God is somewhere in it, and can even use it for good, we will normally close up and close down. The natural movement of the ego is to protect itself so as not to be hurt again.  The soul just wants meaning, and then it can live.

And he leaves us with this Mantra: “God, help me find you, even in suffering.”

04
Mar
10

wondering

I wonder if losing a hand is anything like losing a daughter…even an adopted one? I wonder if losing a friend is like losing an adopted daughter? I wonder about a lot of things these days, like why I am called to lose this hand while having to hold on to its arm? I wonder why this is happening during Lent when my denomination’s theme is Holding On and Letting Go? I wonder how Mary Magdalene and the other Mary did this at Calvary? I don’t wonder how the disciples did it because I know they could not, at Calvary. It took Jesus meeting them on the road to help them get back on track. After that of course, they did quite well…except for one…

But I am not a traitor and am not falling asleep. I keep watch each hour and even when stumbling I am still putting one foot in front of the other…holding on and letting go. I have seen much radiant light in this watch with my adopted daughter, friend and teammate, but I have not yet received the knowing…that enlightenment that God always sends when I am ready and the time is right. So I wonder why this person dying too young from cancer…and so like a suffering child in some respects…has been chosen to leave before her time. Or is this her time and I am just too self-bound to see it?  Has God chosen her to be his paschal lamb this year of our Lord, 2010?

I wonder because I cannot yet grieve as deeply as I’d like. I am a care giver. That is my job right now: giving care—loving care. Wondering fills the void of  loss. I am wondering because I cannot rejoice. I am no saint. I am wondering like a soul wandering in its velvet deep chamber—discomfited and discontent. I did not choose this assignment. It chose me. Once again I am in God’s transformation class, hoping to graduate as soon as possible. Last year at Lent, it was a class in transformation through rejection. This year it is a class in transformation through loss and that’s my weakest subject! Never was good at loss. Don’t expect to ever excel at it. Just hope to make it through without losing at loss. I am speaking in riddles. My heart is a labyrinth of wonderment.

02
Feb
10

and then…

The day following our joyous membership ceremony, Adopted Daughter and I made a visit to the palliative care doctor her oncologist had recommended. Thinking we were going to get something better for pain along with good advice, we greeted the doctor warmly and answered all questions. Then came advice we were not prepared for: “Have you considered hospice?” the doctor asked, succinctly and sensitively. We listened, understood, and as if on cue, we both agreed that it was a good idea to get that service in place at the outset. We quickly understood that hospice was not just for those near death, but for those whose illness leaves them less than six months of life. While we knew the likely prognosis, neither of us were quite prepared for the realities this move would usher into our lives.

No sooner was the decision made than the wheels of hospice care turned quickly…all week long. Every day last week was filled with planning, preparations, announcements, discussions, hospice visitations and shock. By Thursday night shock morphed into full-real in a dance without rehearsal. What I had begun with practicality became mournfully tearful without warning. On Friday a visit by the pastor of our church, along with AD’s friend and pastoral mentor, wound it’s way into an amazingly comprehensive plan for counsel and support that we call the Care Team. This is now in place, complete with a special blog to provide updates, conversation and a visiting calendar for two congregations and AD’s many friends. I am exhausted. I am halfway through an unexpected course in caring (not curing), taught by the holy spirit of God.

In two day’s time, my partner (Big Dawg), AD and another dear friend will pack up a huge van, climb in and head to Cincinnati for the biennial Mennonite Arts Weekend, where I will be an artist-presenter. The theme of the festival is The Art of Place: Sacred Spaces and Common Ground. Long before any of the heartache of AD’s metastasis, or the trials that so painfully excluded BD and me from membership occurred, I had determined that suffering as sacred space and common ground would be my reference. Now, I find this quite stunning—a clear convergence of harmonic God-tones toward a thin place I am both prepared and unprepared to speak about.

“That’s fine,’ says God. ‘Now you can listen and speak the words I will give.”

21
Jan
10

dreams

My heart is heavy and I cannot get to sleep. Adopted Daughter has begun her descent. The cancer has metastasized to her lungs. It will be all over in a matter of months…4…6? We don’t know, but I’ve been here before and I know what awaits. I feel as though something is being ripped right out of my body. I am not afraid of death and neither is she. We’ve been cancer buddies since 2006. I am in remission. She is host to her 4th and final recurrence. Her body is unable to accommodate the toxicity of additional treatment. We are reluctant sufferers—she of physical pain, I of the emotional pain of loss. Grief is what my work will be about now…letting go, a very fitting task for the Lenten season ahead. Timing is everything, they say.

AD is dying just a bit more quickly than we’d hoped, but it’s all relative you know. The physical body doesn’t give up as easily as the spirit. That’s why the descent is so arduous. Suffering Servant. At our last, if we are mindful and understand the meaning of life, we get to live our own Pasch and on to that final trip home. I was there once and I know how comforting that homecoming can feel. Medical science kept me from going home, but it can’t do the same for AD. We ask for healing, but there are many aspects to healing. It isn’t always on the physical plane. I wanted just a couple more years for her…for our adopted family. There were things we wanted to do. We wanted to play. I will have to learn how to walk back and forth through the veil the way she will soon be doing. Walking with one who is dying is a great privilege, one I want to have and feel blessed to have…but I hoped it would be just a bit later…after we lived our dreams, played our games and turned down the lamp.

We had prayed for 2-1/2 more years…to her retirement. We all were going to take time off, get ourselves a big RV, paint it beautiful and roam the country for a couple of months. We had plans to drop in on some of those churches that are having a little problem with understanding that Jesus included everyone in the kingdom, most especially the lowliest ones. We had dreams. I’m not sure I can manage dreams without Ms. AD hanging around with her effervescent optimism. Who will say, “Come on, we’re the wild ones!”

My heart is heavy and I cannot stay asleep. Jesus help me live in peace…

15
Jan
10

let there be light

This week I see light at the end of my long,  project list tunnel. The major project on this list has been my participation in the biennial Mennonite Arts Weekend (MAW) coming up in Cincinnati on February 5-7. For the past 22 months I have been thinking about this in the back of my brain, and for the past  4 months working on it, front and center. The theme of the event is, The Art of Place: Sacred Spaces and Common Ground. My talk will focus on  suffering as both sacred space and common ground. This will be  followed up with  a Power Point presentation of some of my work. I had never done Power Point—hadn’t even installed it on my computer, so I had to install and learn.  Adopted Daughter helped me. (Not only is she a banker with thief-stopping knowledge of the world of credit, but she’s good at installing and walking me through PP!)

My presentation will be a total of 70 minutes. In the gallery I will have a four-panel installation of my cancer odyssey, Dying to Live, suspended from the ceiling—creating a space that will allow people exposure to what it feels like to have cancer. In addition to this I will have a few of my assemblage boxes on display, the handmade book version of Pailoun’s Story,  additional digital montage work—both secular and liturgical, and  Thin Places. If you think that this is a lot of stuff and I must be crazy, you are right. I don’t know what possessed me to cast such a wide net. It just kept growing is all I can say. Once I started putting it all together I realized it’s size. I am one to finish what I start and so I did…pretty much night and day.

This is not all I’ve been doing while this blog got thinner and thinner. As many of you may know, a lot has been going on in the LGBT inclusivity arena as well…painful and arduous experiences which led us to our present church community, where I have thrown myself into providing a stable visual art worship component. This has become a ministry—an outpouring of the gifts I have been given. Also in the mix is this blog which I have so enjoyed writing, AD’s cancer recurrence and my becoming a care provider. I am leaving out many lesser projects and tasks that wove in and out these past months in addition to the aforementioned. It is enough to say that I have learned that multi-tasking is impossible, but serial tasking is not only possible, it’s good medicine for both chem0brain and elderbrain.

So, I see the light at the end of the tunnel and it’s welcome…like springtime. Life’s rhythms are returning to a normal level of busy with time to even clean house every now and then (ugh!). In 1 week Big Dawg and I will become members of our new church and 10 days after that we will pick up our rented van, pack it full of all the MAW stuff, get in and head out to Cincinnati. The only gray spot in all of this rosy, forward tilt is the reality of AD’s health. Right now, as I write this, she is having a CT scan to determine the state of the state. We live in the now and celebrate it, breathing in and breathing out…

31
Dec
09

dying and caring

Yesterday, Adopted Daughter talked about her illness, her thoughts about the immediate future and the way in which she wants to ease into her dying days. It was a sobering talk…not long and not short…just about right for managing to mostly stay in-the-now. We are walking together toward an end that will receive her breath, and for a time will encapsulate mine. I have just commemorated my sister’s passing. I am ready, but for the longing to say: “No…not now, not yet!” But we know it is coming…we cancer people know the signs before others do. We know and quickly learn to savor each day. I hope I am not making it sound easy, because it is not.

Last night I also learned how deeply my Darling Daughter suffers from wounds inflicted so early in her life that she doesn’t have recall. But I do…I was there and I have been waiting for decades for confession and forgiveness. Now that perhaps it may happen in the coming year, I am breathless with hope and fear—fear of overload. Although the river has risen high enough to enter my throat at times, I have not swallowed nor drowned.

Learning Trust: I am becoming a receptacle…a wine skin, if you will, and there’s a strange sense of peace in that. In my best moments, I am a receiver of the Spirit through Christ, and through many others who have gone before. Because of this, I can also be a channel for the Spirit: Legacy – Inheritance.

AD and I are reading Henri Nouwen’s, Our Greatest Gift, A Meditation on Dying and Caring for a class our church will host in a few weeks. She and I will go together and learn how best to walk this walk in the company of Sisters and Brothers. We are both student’s in God’s classroom. Nevertheless, I confess to feeling best when she is here in the house with me, whether sleeping, waking, working, reading—whatever. I have two daughters, one biological and one “adopted.”  One is slowly dying and the other slowly living. The wheel turns and we with it.




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