Posts Tagged ‘suffering



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.

26
Jun
09

Traveling on

Two days ago I went to the city for another lymphoma, maintenance treatment. Being back in that environment, having chemicals dripping into my body to ensure a longer remission is a bit of a catch-22. Takes a few days to recover and about a week to forget about it until the next round. Happily, there will be only two more of them and then I will be a member in good standing of the Full Remission Club. Notice I didn’t say Full Cure Club. There is no real cure for cancer, there is only remission and that allows cancer to be considered a “chronic disease.” (Love that spin..) The war on cancer, begun decades ago by President Nixon, hasn’t been particularly  successful…more like a “mission accomplished” hoo-ha. Nevertheless, I am still standing and determined to make the most of whatever time is mine to love, learn, struggle, stumble, laugh, eat, dance, sing, or suffer through.

Suffer? Did someone mention suffering? Hmm, something so near, but not dear to my heart these past many, many months. How does one embrace suffering when it comes as a result of the innocent love of church and friendships? By Grace, that’s how, purely by grace, that mysterious unquantifiable essence of the Spirit of God.

My dear friend, ordinary (mostly) has referred to the struggles and pain in his congregation. I know a great deal about those struggles as they revolved around me and my partner of 32+ years. I will never be a fan of suffering, but I can tell you that the payoff is spiritually transformative and worth it in the end. It’s just the beginning and middle that are problematic. Traveling through difficulties and outright pain is helped enormously by prayer, supplication and plain old hanging on by the finger nails. (Cats do this very well on window screens…)

In bad times I have envisioned being weightless in a dark universe where I am alone, with God beneath me, like a transparent hammock holding me aloft. I have had  many dark paths, dark nights, dark days during the struggles in the congregation that I loved. Grace is there like a little flame lighting each step. This year I came to understand that faith is not about strength of character or certainty of outcome, i.e., being sure you will get what you ask for. It is about walking toward God when I don’t see clearly, trusting as best I can (imperfectly) and knowing mother/father God hears me when all I can say is “Help me.”

Jesus, help us live in peace from our blindness set us free.

Fill us with your healing love. Help us live in Unity.

I’m walking the bridge, following the light, and leaving no footprints.




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