Losing Control and Learning to Trust: My Unexpected Diagnosis

This is a very personal column. In December of last year, I was diagnosed with prostate cancer. There were no symptoms or problems, just some results from a routine blood test that needed to be checked out. I remember being on a conference call when I saw the doctor was phoning with the results of a biopsy, but continued on with the other call assuming I could return it later to hear that there were no problems. There were problems, he told me, and I would need to see a surgeon.

Surprise was not the right word -- not even shock. The news felt incredulous to me. I was about to launch a new book tour early in 2013 and everything seemed to be in control. And Sojourners was involved in intense advocacy work around immigration reform, gun violence, and the budget/sequester battles. There had to be a mistake, or surely some convenient treatment that would suffice. Certainly, I would work this all out privately, and stay on schedule for everything else. But then the conversations started, as did meetings, further testing, time-consuming activities, discussions of medical options -- and a deepening anxiety began to grow over the next several weeks.

The book tour for On God's Side, both U.S. and U.K., had to be postponed and reset without saying why. I kept the health news and discussions in a small and close circle of family, friends, and senior staff. And I did my best to go on as if this wasn't happening. But it was.

A quick surgery at the end of the year didn't work out for a number of frustrating reasons, discussions about medical options continued, and my care shifted to the research center at NIH, the National Institutes of Health. There, I took part in a new program using resolution MRI to guide surgical decisions -- still a research effort, and not currently in use elsewhere. Such opportunities are available to anyone in the general public, and people can find out about the work going on at NIH and across the nation at its website. The NIH strives to innovate constantly in all areas of medicine, and their constant hope is that participation in such programs can provide both direct benefits to the individual, and an opportunity for their physician researchers to learn more about how to improve diagnosis and treatment for others in the future. (And, of course, this critical work is being severely cut in the sequester.)

The NIH staff's extraordinary knowledge of this cancer and all cancers, which is prolonging and saving lives, was immediately evident, as was the wonderful care they were showing to me. After more and much deeper testing with their extraordinary methodologies and new technologies, a plan was reached and a date for surgery was set for last Wednesday, June 5.

About one week ago, I had major surgery for prostate cancer. It all went very well; the cancer was contained and removed with no signs of further spreading, pending more pathology reports. This significant surgical procedure, the recovery in a hospital room, and then coming home from such a major impact on my body were all new experiences for me. I went back to the hospital this week for follow-up procedures and check-ups. Everything seems to be fine. The surgery "couldn't have gone better," the doctors say, and I seem to be recovering well, too. They keep telling me to go slow and take my time, which is a very good reminder for me.

It's not only good physical advice for healthy recovery but also spiritual counsel for those of us who sometimes tell time by how much we hope we are changing the world.

This was certainly more "major" surgery than I was acknowledging and admitting to myself. I was stunned by the news in December, and wanted to keep it private -- partly to avoid answering too many public questions on it, but also likely because of some self-denial about it all. I really didn't want to let it affect my book tour, but of course it did in significant ways. During this whole process, I'm learning more and more lessons about losing control and learning to trust instead.

I was in very good hands with my surgeon, and I feel our work is in good hands with all of my colleagues at Sojourners, as I take a few weeks now to rest and recover. It's never just about a leader here at Sojourners because we have such a remarkable team; and it's never just about the team because we have such an extraordinary mission; but it's never even just about our mission because we have a God who will always find ways to bring love and justice into the world with and without us, and sometimes despite our best efforts and human attempts to keep "control."

I spoke with a few close friends before going in for my cancer surgery, a day full of anxiety for someone who had never faced a major health issue before. My old and dear friend, Wes Granberg-Michaelson, contrasted our need for control with the "Prayer of Abandonment" by Charles De Foucauld. So I went back to that classic prayer, and found it the right one to take into surgery for someone who had been totally preoccupied with the absolute craziness of an 18-city book and media tour and was now facing a very personal health crisis.

"I abandon myself into your hands;


do with me what you will.

Whatever you may do, I thank you:

I am ready for all, I accept all.

Let only your will be done in me,

And in all your creatures --

I wish no more than this, O Lord.

Into your hands I commend my soul:

I offer it to you with all the love of

my heart,

for I love you, Lord, and so need to give myself, to surrender myself into your hands without reserve,

and with boundless confidence,

for you are my Father."
It was a perfect prayer for surgery and recovery, and I hope one I remember before my next book tour! A week after surgery, my wonderful colleague at the publisher Brazos/Baker, BJ Heyboer, wrote me what a member of her discernment committee for the Episcopal priesthood had said to her: "Control is an illusion, an illusion that we all pursue. But the sooner you see it as the illusion it is, the better off you -- and your ministry -- will be."

My friend Richard Rohr, who also had a bout with cancer, told me that "these things change our relationship to God." He writes these days about how the "fallings" and "failings" in the second half of life, which are completely beyond our control, can lead us to deeper places than the first half of life can ever go.

And after agonizing repeatedly about how the changes in timing, preparations, focus, and unexpected events significantly altered what I expected this book tour to be, I encountered these words from Soren Kierkegaard, "Life can only be understood backwards, but it must be lived forward."

I am trying to live into that with this book now too, trusting God to use it and take it to the places and people it needs to go. The "tour" was certainly affected by this cancer, more than I wanted to acknowledge or admit. But I believe in the message of the book even more than when I wrote it on sabbatical last year, and the signs of the times suggest that a renewed understanding of "the common good" is absolutely central to a better future for us all. These more relaxed summer weeks for me now will give me time for physical recovery, spiritual reflection, and perhaps some creative space to think about how I might be useful to what God wants to do with this common good message in the days ahead.

Sitting in that hospital room, even in times of pain or anxiety, I was thinking about the billions of people around the world who don't have all these health care resources available to them as we do, and don't even have the chance or option to fight for their lives. That must become a fundamental issue of love and justice for us; and I hope this experience will make it all more personal for me.

My pastor, Jeff Haggray, suggested I not be so private about all this, and that it might be time to offer some personal reflections on this whole process which might be helpful to other people. So I decided to write this.

But life goes on, and I am still coaching my son's Little League baseball team through the play-offs (but in a chair and behind the dug-out fence, at doctor's orders not to risk dodging line drives while coaching at third base!) Our Tigers won their semi-final game last night and we are now in the Championship Game on Saturday! My time with these 10 year olds is my best therapy for recovery.

I would appreciate your prayers for all of us who are wrestling this summer with issues of physical health and spiritual transformation.

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Article written by Jim Wallis for the HuffingtonPost

http://www.huffingtonpost.com/jim-wallis/losing-control-and-learni_b_3436506.html?utm_hp_ref=religion 

Crisis and Faith: How Losing Almost Everything Can Help You See What Matters

 

Martin Spinelli
Author, 'After the Crash'

My 4-year-old son Lio had been in a coma for more than a week. While his bed was about to be changed, I maneuvered myself around all the tubes and wires and slid my hand under his back up to his head. With my other arm under his knees, I carefully lifted him up onto my lap and sat down in the vinyl-covered chair beside his bed. I wasn't expecting his skin to be so warm and I let myself feel a bit comforted.

After seeing me hold him, his grandmother (my mother) wrote in her diary that the sight of Lio draped in my arms reminded her of one of the most well-known Easter images: The Pietà, that famous Michelangelo sculpture of Mary holding Jesus after the after the crucifixion. She finished by saying, "Lio will come back to us too."

In the past I've often found words like this a bit difficult to take in. It's almost as if that most famous Christian miracle, like the miracle I was praying for (that Lio would defy the doctors and cheat death himself), could be undone or made impossible by speaking about it in such an obvious way. Maybe this is more my problem than it is my mother's. But her attempts to describe the indescribable have caused me a crisis of faith because I know that words are slippery things that often suggest the opposite of what they say on the surface. But sometimes in life crises are really second chances in disguise.

My crisis began 10 days earlier. It was going to be the most important day of my career: I was scheduled to give the keynote address at a huge international media conference in Sunderland, in the north of England. I had worked all my life that moment: I had published journal articles and written reviews; I made ambitious and challenging radio for the BBC and for NPR stations; my work was in museums; and I had just traded in my good academic gig in New York for an even better one at a university in the U.K. I felt like I was at the top of my game, I was driven and striving, with this constant itch to be forever notching up more lines on my résumé.

As it happened, I never got the chance to deliver my amazing talk on new ways of making radio. Instead, I was met at my hotel by two policemen who lacked the usual swagger and who were struggling to look me in the eye. They told me that there had been an accident on the highway and that my wife Sasha had been killed and that our son Lio was very near death in a hospital in London. I collapsed into the chair behind me and, as I struggled to process what I'd just been told, the person I'd been all my adult life simply died too -- and died quickly.

Three hours later I was by Lio's side in pediatric intensive care. The space was dark and windowless, lit mostly by the small red LEDs of medical equipment. There, surrounded by a halo of computer screens, I found my only child with a fractured skull, severe brain damage and a horribly shattered left leg. It was suggested that I consider donating his organs. Doctors told me he would likely not make it and told me that the best, the absolute best-case scenario that I should allow myself to hope for was Lio one day attending a school for the severely mentally handicapped. Absolutely everything I'd ever wanted for my life and for my son's life had evaporated in a matter of hours.

But as I looked at him, bruised and battered as he was on his hospital bed, something began to fill the void. I don't know where it came from or how I came by it, but I was getting something. I had lost my wife, but at least -- at least in that moment -- I still had our little boy. As I stood there, my thumb wedged in his tiny clenched fist, I found myself saying, "I will face this. Nothing will stop me doing what needs to be done, saving Lio and getting him out of here. He will do it." Then I found myself seeing the rest of my life unfolding, and unfolding happily, pulling Lio back from this precipice. I had been burnt empty by fear, but this little meditation that I somehow stumbled onto was putting something back, and while the fear would swallow me again and again I would again and again fall back on a version of this little pep talk.

The next morning Lio was still with us. And with this simple fact in mind the tiny kernel of faith that I had nourished by his bedside all night long stirred and grew a little bit. Gradually, with infinitesimally small steps and in the face of some brutal and devastating setbacks, Lio got better over the next days: He was taken off of his respirator and breathed on his own, unaided, when I'd been told that this might never happen. His brain started regulating his body temperature on its own again. And his muscles, initially as tight as steel springs, began to loosen.

How and why these improvements happened, no one seemed sure, given, as the doctors were fond of saying, "the original nature of his injuries." I like to think that I had something to do with it. I almost never left his bedside. I would read to him from his favorite books. I would spin out for him over and over again the magical stories that his mother and I had invented about elves and dragons and a littler miller boy who lived in the Italian Alps, stories that had been a part of his bedtime routine since he was a toddler. I would trace little lines and circles with my fingers along his face and his limbs four times a day while special brain stimulating music was playing to him in headphones.

With each incremental movement he made in the right direction, I collected another piece of my heart. In those moments and through that closeness I discovered something. I came by a profound sense of meaning and a knowledge of what I was really meant to be: not a high-flying academic, but a father -- the best father I was capable of being. Where the old me was hounded by a non-stop restlessness, an ambition to always be achieving more and having more, there, in those quiet and anonymous moments at my unconscious son's side, I found my purpose. I felt a clarity that had eluded me my whole life. Sometimes today, if I get too distracted by more traditional ambitions, I push myself to remember that clarity.

The moment when I held Lio in my arms for the first time after the crash, the moment that my mother thought looked like The Pietà, will stay with me forever. As I held him warm and broken in my arms, something happened that even I wasn't expecting. He opened his eyes. Like a newborn baby doing it for the first time, he opened his eyes for me. I can't honestly say whether they were focused or not, but he did open his eyes. As I looked at him and (maybe) he looked at me, everything else in the world stopped and I stared transfixed for the first time in 10 days into the blue of his eyes. I was lost in simply their color. There it was, beyond any subjective hope, a sign that Lio was really and truly on his way out of a coma.

The word "rebirth" is certainly a bit worn out, clichéd at best and tedious at worst. But after what we've been through, I find myself making an effort to be more charitable with other people's words, not just my mother's. The crisis of the crash -- six years ago now -- changed me in ways that I'm still coming to grips with. Perhaps most importantly, faith, in both general and specific senses, is now something that I don't shy away from, that I don't seek to avoid either as a sensation or a topic of conversation. In fact, faith has become an odd kind of tether to those terrible early days in the hospital. It's a conduit to the purpose, meaning and love I found there in those dark moments by my son's bedside, days which remain, in the strangest of ways, the most contented of my life.
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Courtesy of  http://www.huffingtonpost.com/martin-spinelli/crisis-and-faith-how-losing-almost-everything-can-help-you-see-what-matters_b_3040028.html?utm_hp_ref=religion