Life in the After
May 15, 2011
Umstead Park United Church of Christ
I simply cannot deliver a sermon today because to me the word, "sermon" connotes wisdom about God and holy things. And a person preaching comes to the pulpit with formal training in such matters. I have neither wisdom nor training. But as Doug pointed out last week—we’re getting older--and I have hopefully gained some perspective and I can share some of those views--some musings--if you will.
You see--I learned with complete certainty in the fourth grade Sunday School class at St. Paul's Cathedral in Peoria, Illinois that I fared poorly at things religious. In the fall of 1962 I decided that I was going to win the Sunday School Award of Excellence. Our family didn't do worship regularly, so we weren't very high up on the church social structure, and little did I know of the reality of cathedral politics and the constitution of power within the ranks of the school volunteers. So armed with my determination and driven by a hefty dose of guilt on behalf of my parents--we went every single Sunday that school year. I memorized every prayer and showed up prepared for every lesson. I wanted that pretty, silver crucifix so badly that I could taste it. When the award once again went to the same little girl whose mother played a key role among the church volunteers, I was crushed as only a fourth-grader can be--for about a day.
Obviously I survived the disappointment BUT--I took away from that experience the firm understanding that my church efforts would always be lacking in some way. By extension, I thought I had a leg up on a path to hell. By the time I reached puberty my reservation was all but confirmed. And by late adolescence I was halfway there. When my favorite married priest ran off with another man's wife, God and I parted ways. I left the church and studiously avoided any and all things religious for over 20 years.
During those 20 years I began to strongly suspect that religion had little to do with God. Even after returning to the Episcopal Church I remained wary--especially since this was when the controversy over the role of gays in the Anglican Community was beginning to seriously heat up. I couldn't understand why--if we were all God's children--like we were taught in that fourth grade Sunday School class--would God wish anybody to be excluded. That never seemed right. In fact, when I looked at the history of western religion it seemed as though more people had been killed in the name of God than for any other reason. When examining the historical beginnings of any new church, step one includes the formulation of rules about who to keep out. These were exclusive institutions.
It was not until I found this community of faith did I find validation for such concerns. It was not until walking through this door for the first time did I find a place that felt safe to be honest about my decidedly left-wing opinions about issues of social justice, the environment and peace within our global community. It was not until arriving here that I discovered a family who would allow somebody like me--with my imperfect--and incomplete understanding of anything religious--to share my musings.
Let's turn to the title of today's--musings--"Life in the After"--a title that refers to the time after a watershed event--a seminal moment--a defining deed. You know the experience because you've had some-- you never forget them--when the universe ploughs a trench through the fabric of your existence and suddenly life will never, ever be the same again. In the international arena--events such as Hiroshima. On the national stage--tragedies such as 9/11 and in our personal lives--birth--marriage--death. We talk about such events in terms of Before and After.
My most recent Life in the After began at the end of an appointment on July 27, 2009 when a medical doctor, casting his eyes downward (never a good sign) in what was--I'm sure--his best professional demeanor, spoke the words, "interstitial lung disease, which I suspect is caused by scleroderma." The "lung disease" part I got--and for an amateur flute player that certainly didn't sound good--but the remaining syllables lacked meaning--and I scrambled for a pencil while asking him how to spell them. When pressed for more information, he continued to avoid my gaze (ohhhhhhhh...definitely not a good sign) and suggested that we talk more when he had the results of a CT scan and blood work.
During the endless days that followed, I did what every American with access to a computer does--I Googled it--and found descriptors, like, "chronic, unknown cause, autoimmune, rare, poor prognosis, often fatal." When the doctor called and confirmed his suspicions--Life in the After became official.
For the next few weeks I focused almost all my energy on The Disease. Research revealed that like most autoimmune diseases, it's complicated and the exact same malady can manifest in many different ways with various levels of severity. Often autoimmune diseases tend to clump together—scleroderma and Reynauld’s disease, for example. No two cases are identical.
During this time Bowman would find me huddled in a downstairs chair in the wee hours of the morning--sometimes wrapped in a prayer shawl. But I could not pray--not because I felt anger--or resentment. I can't even say I was especially afraid. It was more like a stunned state of astonishment that such a thing could happen to me--to us.
Since multiple body systems can be impacted, we were referred to specialists and we started the exam-wait-referral ritual as more and more lab workups and tests were conducted to discover the scope of the disease. As results trickled in I began to move out of the cocoon of the downstairs chair and tell family and a few friends. I resigned as flute choir director and put away my instrument. Then I began the heartbreaking task of telling people here. Doug returned from sabbatical just about the time we discovered that researchers at Duke were conducting a scleroderma clinical trial. We waited weeks for the appointment to meet with the doctors. Even though this was probably my darkest hour, it was about this time that I resumed my conversations with God.
Sometimes I gave him hell. I figured he could handle it. I struggled with the realization that I had met what would probably kill me and it wasn't a pretty picture. While on the one hand we all intellectually know we're going to die--emotionally embracing death--for me--was a very different reality. It's not even that I fear death because I tend to share the view of my good friend Vivian: "I actually think whatever comes next is going to be interesting.” Now THAT’S a positive attitude! At the same time—don’t hear me wrong—I’m in no hurry to get there.
When the long-awaited appointment day finally arrived we made our way to Durham where hope was born.
I looked to be a good candidate. Let's start the tests to find out.
I remember telling Doug afterwards that it was like I had been given wings. I had never given much thought to the concept of hope before. I had never considered why the theme of hope marks the first Sunday of Advent--the first Sunday of the church year. All of sudden I wasn't cussing at God anymore. Instead I entered a period of awe.
These were the days that birthed my Advent wish to you--may you live like you are dying--just like the words from the country song. Every sense seemed heightened--sweeter--sharper----breathless. The sight of a morning moon hung in a crisp Carolina sky brought moments of pure bliss and the whiff of an autumnal fireplace absolute delight. Never had I embraced such awareness of the moment. The now.
I think it's impossible to maintain such intensity for any length of time because it simply takes too much energy. However, the takeaway from that time of awe continues to echo through my thoughts today. "Life in the After really is about Life in the Now." And for that lesson, I am truly fortunate.
When we finally learned we had been accepted into the trial and randomized to chemotherapy we entered what I call the, "Year of Love." An even more apt description would be, "The Year of Learning to Accept Love." Doug said on Easter that Jesus wanted us to love and to serve. And while we here at UPUCC extend a LOT of energy towards those efforts outside of this community we rarely talk about love and service within the community. But this group can do it very well. I won't even try to make an exhaustive list of the outpouring of support from you. You are truly amazing.
And at the beginning it was really, really tough to accept.
You see--I had always been on the giving side--never the receiving end. So for the first time ever in my life--I had not only to learn to ask for help, but to truly trust that a larger community loved me as much as I loved them. As I love you. And for that lesson, I am truly fortunate.
We're almost seven months out of chemo now and for the most part we're doing well. Most systems seem stable. I say “we” because I could not imagine how I could have traveled this road without the unwavering love and support of my husband. He was at every chemo treatment, every visit to the ER and he’s carried my oxygen when I know he’s as tired as I am. I am most truly fortunate.
There's more tests on the immediate horizon. Possible esophageal surgery. A lung transplant might be in the long-term future. We're keeping as many options open as we can. At the same time I try not to become The Disease.
An oxygen tank now acts as a standard wardrobe accessory.
You know--losing my hair during chemo was a piece-a-cake compared to the oxygen. Bald felt brazen, bold and actually kinda fun. Oxygen felt like an advertisement for feeble. In fact—the day the doctor wrote the script for oxygen was almost as crushing as the original diagnosis. For the first time I dreaded coming to worship. I felt—shame—embarrassed—and angry. In some way I had let you down. After all that you have done for me I should be getting better. But unfortunately—chronic disease doesn’t work like that. So after a few days of sputtering and spewing….after forcing myself to go about with the deplorable tank in tow…I developed a strategy. Humor. I can ridicule the thing. It really is pretty outrageous and you can’t hurt its feelings. So over the months we've reached an uneasy alliance--a peace of sorts--Mr. Tink and I. And for that I am grateful—the peace that is.
My final musing addresses prayer.
Before when someone would say that they would pray for me I thought the remark was little more than a passing nicety. I felt flattered. Were they sincere? Probably. And what a kind thing to do. Today I view those words a little differently and with a little suspicion. Are there expectations attached? I think of a recent exchange with my barber. She told me in great detail about someone she knew who had terminal cancer but who was miraculously cured because she prayed. She finished the story with the predictable comment. “So I know prayer works.” I’ve heard the same well-intentioned, trite story with sight variations at least a half-dozen times and feel worse with each telling. Thank heavens—no one here has trotted out the line, “All you gotta do is pray” with the unsaid proviso, “and if you’re deserving enough God will save you.” So is the reverse true? If I’m not saved, does that mean I’m undeserving? Sounds like an awfully vengeful God. Maybe I really did have a leg up on the path to hell back in grade school.
But I don’t think God works this way. I do think prayer works—but in more subtle ways. Prayer is at work when I love and can accept love. Prayer is at work when I can laugh. Prayer works when I close my eyes and turn my face into the warm spring sun. My dog crawls into my lap and licks my face. Time stands still and I know that this is what heaven feels like. Prayer is at work when I know that life in the after is about life in the now. And for that…I am most fortunate.