Thursday, May 26, 2016

Notes on Notes from Susie

(A version of this post - the actual letter I wrote to Mark, edited only slightly to remove a couple of very personal references - has already appeared on the website Here, I have edited that letter more carefully for my readers who do not know Mark, Susie, or the story of her last years.)

I have just had quite a weekend. The Susie Edwards Memorial Concert was Saturday night, held in conjunction with the release of the new book Notes from Susie. You can read about and order the book here.

Without rehashing the history that has led to the book, let me say briefly that it is a compilation, primarily, of a running diary kept by Mark and Susie Edwards during Susie's two-year bout with cancer that ended with her death in March of 2015. This diary took the form of almost nightly Facebook posts on a group site established by the Edwards' daughter Weslee Edwards Hill.

This blog is not really meant to be an advertisement for the book. They have a good marketing campaign already. Instead, I want to see if I can articulate my reaction to having read the book on the heals of having sung in the thrilling concert, which you can see here. There are some spoilers about how the book ends in this blog, but since I have already said in the previous paragraph that Susie died last year, I don't think any of the spoilers really matters.

I began reading the book the night of the concert. I sat up late reading, but I had to give up a little after midnight, 100 pages or so in. Rehearsals were long and the concert was intense, and I was exhausted.

I picked up reading again on the flight home. I expect the tattooed gentleman sitting next to me drinking his scotch on the rocks wondered why I was getting weepy reading a paperback, but he did not ask. The plane landed just as I reached the point where Susie chooses to forgo further treatment and Mark calls in hospice. We got our bags, drove home, and spent some time with my daughter, and then I came upstairs, turned on the video of the concert, and finished reading.

Reading the book with the concert playing in the background created what I would call coincidences... if I believed in coincidences. For instance, as I got to the page on which Mark records Susie's actual death, speaking of how she "turned and looked straight into the Light," I was listening to "Be Thou My Vision."

Having read most of the words in Notes from Susie the first time as they were posted on Facebook, I went into reading the book with an expectation of being reminded, and I suppose I was, but that is far and away not the primary experience ... or even in the Top 5, of what the book meant to me. Reading this book was not about reminders. Reading the book was an almost entirely new, and profound, event.

So, if being reminded was not the primary impact of the book, what was?

First, I heard Susie's voice so clearly. As I told Gena on the drive home from the airport, I do not know that I ever thought of Susie's speaking voice as being particularly unique, but it is distinct to me now. I read all the time, and I suppose I conjure up voices in my imagination for characters in books, but never before has it happened to me like this... where I read the words of someone and hear her particular voice enunciating every syllable as though she were sitting next to me carrying on a conversation. I don't really know what to make of that yet, except to say the book is entirely personal. I did not hear her voice in that same way when I was reading the posts on Facebook; this was different in kind. So perhaps there is something to the idea that Susie was somehow with me, sitting next to me, writing me a note and reading it out loud to make sure it was just right before she sealed the envelope, as I read. My theology does not entirely know what to do with that, but I know what I experienced.

Second, I am overwhelmed by the lists of things for which Susie is grateful as she walks through the shadow... even at times expressing thankfulness for her health.

Third, I found myself rooting for her as I read. Of course, I knew the ending. I knew that she is not going to make it. But as I turned pages, especially early on, I found myself hoping against hope that the next infusion will be the magic elixir that will kill the dreaded disease and mean decades more of life for her. Illogical? Yes, since I just sang in her memorial concert. And yet, the struggle is on, and as in any good book, I was fighting right along with the hero.

Fourth, I found myself asking hard questions, questions with painful answers. Since I knew the ending, and the timing of the ending, I reacted viscerally as the days wear on and the details become more and more painful. I started yelling (in my head - I did not want to disturb my seatmate's scotch) at Susie not to have that next infusion, not to put herself through another dose of poison that I knew is not going to work. I found myself asking, "Is it worth it?" And before that awful question was even fully formed, the answers came flooding in. Whether the medicine gave her another week or another month is not for me to know, but what I do know is the implausible, incredible, oh-so-real impact Susie's (and Mark's) experiences had and are having on hundreds, yea thousands, of people every single day. What God did with the choices, hurts, hopes, dealing with the ups and downs of a losing battle, and of course faith of Mark and Susie goes beyond the depths of comprehension, passing all understanding. As their daughter Weslee explains near the book's conclusion, Mark and Susie's story has had and continues to have a modern fish-and-loaves impact. As the diary progresses, Mark and Susie make every choice based on the best advice from doctors, taking each other's wishes into account, and grounded in faith in God; and the outcome is what the outcome is. In the meantime - in the middle of the journey - they each, individually and together, evidence what most people only sniff around the edges, if they have any real sense of it at all. I do not for a minute suggest that this two-year free-fall was "necessary" or was "God's plan;" but I know beyond all doubt that God did and is doing a marvelous thing with Susie's last two years. And just as God needed Antonio to build a Stradivarius violin, he needed Mark and Susie to pen these words. During the daily readings of the postings as they appeared on Facebook in 2013 and 2014 and 2015, I had no perspective to understand the importance of the project; at that point, I was simply praying and hoping and waiting for what would happen next. Now, in reading the book when I know the ending... and simultaneously regretting every pain and miserable moment Susie has and Mark shares... I cannot but rejoice.

Fifth, I am humbled by Mark's faith. I have known Mark a long time. I sang under his baton for years. We did shows together. We played softball together. Mark ministered to my wife in many personal and powerful ways. He and I were charter members of the Tuesday morning Bible study group he discusses in the book and still attends. I have always known Mark as a man of faith... but this dark night of the soul gave him a whole new way to follow, a demonstration of faith beyond the comfort of the podium and the notes-and-rests for which he is professionally and vocationally trained. And I suspect Mark would admit - and agree with me - that these struggles grew his faith. Mark Edwards - musician, minister, composer, arranger - discovered a new song in the night, a new hymn-tune to which to set words he had known for years. In concluding the book, Mark demonstrates vulnerability and questioning without once betraying a failing of faith, and for that he is a role model to me and to all who read this book. Like Jacob, Mark had to wrestle with God, and he emerges walking with a pronounced limp; but he leaves as Israel, the chosen of God.

I have other reactions to the book, but they are more personal, for Mark and his precious family are close to my heart. Some of my reactions remain between me and them.

And after all that... yes, I was reminded of the privilege I had - as countless others had - to share a little part of the journey with you both.

I thank my God in all my remembrance of Susie, and of Mark.

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