Last Wednesday, March 21, was Johann Sebastian Bach’s 327th birthday. I know this because I was listening to a J.S. Bach extravaganza on my satellite radio while driving between home and business meetings and doctor’s appointments all day.
I clocked a lot of miles and heard a lot of Bach. Though baroque is not my first choice in classical, this proved a blessing. His music provided the perfect balance to the necessary and supportive but exhausting experience of seeing my rheumatologist at Boston Medical Center. I love all 
my docs at BMC and here at home—they are wonderful, dedicated physicians. But whenever we talk in great technical detail about symptoms and medication and diagnostics and what may or may not happen next, I’m always drained.
Scleroderma is so complex, involves so much to monitor, that when we discuss my latest issues, much as I probe and want to understand the minutiae, there’s a part of me that doesn’t want to know, that just wants to treat it as the white noise in my life, annoying, in the background, to be ignored.
After my appointment, west-bound on the Mass Pike, as I sorted through our conversation, on came Bach’s Violin Concerto in A Minor. And I remembered playing it. Years ago, in high school. I could still feel the trace of fingering in what’s left of my left hand’s fingertips. As the soloist began the poignant second movement, I recalled the phrasing, how I had loved to bow those notes. Bach’s haunting, wistful melody has been cycling through my mind, since.
So here I am, more that three centuries after Bach composed his masterpiece, and the music speaks to me. And I’m grateful. And awed by the way that a great artist’s creation still resonates, feels fresh, inspires insight, so many years after he set down his pen.
And I wonder, what will I leave behind? I wrestle with this question often. It will be my 58th birthday in a few weeks. I don’t feel old, despite the way my scleroderma gnaws at me. But I do feel that each day is more precious, that I don’t want to waste time any more doing things I don’t want to do. And that I want my writing, my art, to be my main focus.
This is what gets me out of bed in the morning, even on a day like this when I’m still tired after a full night’s sleep and feel like I’m moving through a vat of glue. Writing. Putting one word next to another, one sentence after another, to see where it leads.
Bach described his art this way: “The aim and final end of all music should be none other than the glory of God and the refreshment of the soul.” He reached his lofty goal note by note. I can’t say that I have as clear a vision for my writing, but I know I’ll discover it if I just keep at it, word by word by word.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.
I look forward to reading your wonderful blog every week. Blog is such a weird word. Your writing seems too eloquent for something entitled blog. Too close to blob and doesn’t do your words justice.
Thanks! I really appreciate your feedback and that of everyone who’s commented so far. Quite the adventure developing this.
This post on Bach seems especially well written to me, how you interweave his music, your feelings about detailed medical visits, and your wistful concerns about your legacy. Regarding this last, I am reminded of the Saying of the Rabbis, “It is not given to us to complete the task, but neither are we allowed to desist from it.” I think this is hopeful because efforts, even if seemingly incomplete, pay off in unexpected ways. I have taught hundreds of students in my career and graded probably thousands of papers. Most of that work goes into a void–the papers are returned, the students graduate, sometimes with a good word for me and sometimes not. I seldom know whether I had any lasting impact on them. But very occasionally, and sometimes after a very long time–ten, twenty years–a wonderful comment will come floating back from someone who takes the trouble to let me know I benefited him or her. I don’t ask for more.
I often think of this process, figuring out what matters, where you’re headed, how to get there, as analogous to the creative process of writing a short story. You start writing and follow where it leads. One of my fiction instructors likened it to following a penlight through the forest. So, yes, you don’t often know the true, long-term impact of your efforts. And it’s a blessing when someone takes the time to let you know that your work mattered.
Evelyn: Thank you for your wonderful words and your insights on Scleroderma, the process of living with it, and just plain the process of living day-to-day. Thank you especially for this piece. My husband was diagnosed 7 months ago with scleroderma and Bach is his favorite composer. It was wonderful to be able to click on your link for the 2nd movement of the violin piece and read your marvelous words with its restorative, peaceful notes playing as counterpoint to your insightful words. It’s somehow assuring to know that someone else out there deals with the problems of tiredness after a “full night’s sleep” (ha!) and walking like they are wading through glue – watching my husband go from such an active person only 7 months ago to his current state has been hard. It is good to know that at least the mind is still there – although distracted daily by pain. Keep writing – if nothing else your legacy will be to inspire those of us who either are helping a loved one with this rotten disease or for those who are dealing with it themselves. You are, at least for me, a newly discovered jewel that I shall treasure!
Thank you, Julie. It means a great deal to me that writing this blog can really help others struggling with this disease. I hope your husband is getting good care. Scleroderma has become the third partner in my marriage, and I’m sure you are experiencing the same. Support groups help for both your husband and for you. Please take a look at the Resources page in my blog for contact information, if you haven’t located a group in your area already. My best wishes to both of you.