Saturday, September 30, 2017

Reflections

Yom Kippur came in last night, Friday night, as we ate a late evening supper of blacks beans and rice, a side salad, and bread.

If you are Jewish or familiar with the rites of Judaism, you know that any sentence linking Yom Kippur and eating is immediately suspect. Yom Kippur is the capstone of the High Holy Days, the Days of Awe, which started midweek last week with Rosh Hashanah. It is considered the holiest day of the Jewish year, one of introspection and atonement, and requires fasting from sunset to sunset.

But there is an exception from the fasting. If you are ill and it is against medical advice to fast, you do not have to fast. In fact, some Talmudic commentators observe that under such circumstances, the individual is prohibited from fasting as to prevent further harm to the body.

As a person with cancer who is in ongoing treatment, treatment that just moved into Phase 2 earlier this week, I get an exemption. Given how I felt by day's end (at the start of Yom Kippur), I knew I had slid past the point of no return on feeling okay (heck, I'll even say "decent") and was rapidly approaching the stage of red flashing lights accompanied by a loud repetitive buzzer.

I am coming up on my 13th anniversary of being diagnosed with multiple myeloma. I have far exceeded the mortality tables for this particular cancer. Six to seven years post-diagnosis is a good, solid number for how long one lives. Over eight and the crowd starts thinning. At 13 years out, I feel like I am perched on the far rim of the flat world depicted by Renaissance cartographers.

Here be dragons.

The High Holy Days, regardless of how I observe them in the larger Jewish community, are for me a meaningful time of the year. Perhaps the most meaningful time of the year. I spend the days leading up to them, the waning days of the old year, reflecting on the year past and the year to come. During the ten days between the start and conclusion of the Days of Awe, I often meditate on what I could have done better or differently in the last year and what I hope to be and do in the year just beginning. What am I going to do to be a better friend? A better colleague? A better partner/spouse/companion to Warren? A better parent? A better family member? A better member of this community? Tikkun olam—the obligation of each Jew to repair the world, not matter how small a repair that may be—is always present in my mind.

There is always, always room for improvement in the community, in my work, in my life, in my family.

Tradition has it that during the Days of Awe, the Book of Life is opened in heaven, so that one's fate for the coming year may be inscribed. The book closes at the end of Yom Kippur. A traditional saying is "may you inscribed for a good year in the Book of Life."

May we all be so inscribed.

Sunday, September 24, 2017

Loose Threads

Yesterday Warren had an afternoon rehearsal (followed that evening by a concert) in Mansfield, which meant I had a lengthy block of time in which to read and write.

Reading I did. I finished off Bootstrapper, a painful, thoughtful, hilarious memoir by Mardi Jo Link. It is appropriately subtitled From Broke to Badass on Northern Michigan Farm and is about divorce, poverty, and scraping by. 

But the writing? Sometimes I just can't make the sentences flow coherently no matter what. This was one of those times. Three starts, 400+ words in each time, and...nothing. The topic would bog down and I couldn't salvage it. Or the next one. Or the next one.

Sometimes all I have are bits and pieces of thoughts. It is not unlike opening my well worn sewing box and seeing a sketchy layer of snippets of threads from prior repairs, some still threaded through a needle, but all too short to use.

So here are my loose threads, in no order chronological or otherwise, from my afternoon and my blog attempts:
  • Doug's wonderful memorial service and the many layers rippling out still from it
  • Effigy Mounds
  • Dinner in Rochester with my longtime friend Tani and her partner Tom (Tani and I go back some 30+ years)
  • Decorah, Iowa, and wondering where that little gem has been hidden all my life
  • Mayo
  • Mayo
  • Mayo
  • A vivid prairie sunset
  • Realizing there were still plenty of tomatoes in my garden 
  • Being on campus at the University of Chicago and realizing we were in the middle of the freshman arriving on campus
  • Remembrance Rock (Carl Sandburg's ashes are under it) 
  • Crossing the Mississippi River three times in one day
  • Making a sour cherry pie with my dear sister-in-law and savoring every bite (our husbands, brothers, do not eat cherries in any form, which baffles Margaret and me, but leaves more pie for us)
  • Super Dawg
  • The iconic red barn set against the autumn trees 
  • Nomadland (Surviving America in the Twenty-First Century) by Jessica Bruder (If you are reading only one book on the continuing economic wreckage of modern America, this should be it) 
  • Taylor, my "other" son, getting married yesterday midday
  • Making it home Wednesday evening before sunset and Rosh Hashanah began
  • Gifting a piece of art—one that I love so much that Warren said, with surprise in his voice, "you're giving them that?"—to someone I love and knowing it was the absolutely right present

And that is enough for now. 

Friday, September 15, 2017

Lost Dreams

Last night my brother Mark texted me:

I was just thinking. If Dale was still here and was able to open up a business on the islands, it would have been destroyed. That would just be the exclamation point of his business decisions...Just saying.

Our older brother, Dale, whose 64th birthday is next week, will have been dead two years come this October.  At the time of his death, Dale was underwater and delinquent on two mortgages (his residence and a rental property that I have written about before) and owed tens of thousands of dollars on overdue credit accounts, utilities, and my parents. Along the way, he had depleted every retirement account he had—not that he had huge sums in them—presumably feeling the tax hit was worth getting the cash.

It was the sort of debt that at 62 he would never climb out of, what with the real estate market soured and his only real income being hard-earned as a car mechanic.

But Dale had a plan, along with several others. Now whether he or the others or he and the others came up with it is immaterial. The plan was to turn his back on his mountain of debt and the creditors dunning him, and move to St. John Island in the U.S. Virgin Islands to open a bar along with those others. They had found a willing investor and Dale no doubt saw himself living a worry free, cheap Island life.

And while our brother had a string of business busts dating back some 30 years, he at least had the right personality for that line of work. Dale was funny, congenial, and a good listener. No wonder he was so angry whenever anyone mentioned the gravity of his situation (Stage 4 metastasized lung cancer). His dream was just right over there, just a plane hop away.

So when I got the text from Mark, I texted back:  Word. The final act of the play.

Mark agreed: Yep, the curtain came down. 

Without looking at a computer, I figured St. John Island was hit hard by Irma. After supper, I went online to find out. Words like "devastated" popped up immediately.

Mark was right. Had our brother made his escape, and assuming he'd been able to pull off the bar dream (and actually keep it a viable business), it would have come to a crashing end with Irma.

All that came to mind was Arthur Miller's Death of a Salesman and that magnificent Requiem at the end. What was our older brother but a later version of Willy Loman, chasing a tired dream and coming up short?

In the end, our brother's estate was insolvent and messy. I resented the toll it took my my brother Mark, the executor, who saw it through to the end. It was Mark who got stuck tracking down all the debt, the scant handful of assets (old—not vintage—vehicles, small change in bank accounts, some furniture). Every get-rich plan and every get-rich scheme, because Dale had both, had come to naught.

Over the last several months, I have been thinking about our family trajectory and narratives. Dad came out of harsh Appalachian poverty; my mom came from a working class poor family. It was our dad who broke the poverty cycle by becoming a skilled machinist. And so I scratch my head at my brother, a skilled mechanic in his own right, searching for Easy Street, hoping for a golden ticket when he unwrapped the chocolate bar.

In the end, it didn't make any difference. Dale is almost two years gone and the bar dream died with him, rather than getting flattened on a hurricane-ravaged island. He got out from under his mountain the debt by dying, not by skipping off.

There is nothing funny about the destruction of Hurricane Irma. Nor was there anything funny about the mess my brother left or the fact that he was willing to walk away from the mess without taking responsibility. But as Mark and I went back and forth, he texted me this:

I could picture him thinking, well I got one over on everyone I owe money. In my mind he is saying that as he is hanging onto a flagpole with his feet straight out behind him. 

And that is funny.

Friday, September 8, 2017

Ready Or Not

We played a lot of hide-and-seek when I was a kid. We had a large back yard, and a game at dusk on a summer night could go on for multiple rounds. The great thing about hide-and-seek, whether you are the hider or the seeker, is that moment when the seeker finishes counting and shouts out "Ready or not, HERE I COME!"

Ready or not, here I come. 

I'm back. Back ready to write. Back aiming for a post once a week. I'll see how it goes.

So what changed when I walked away from a weekly post back in July to a spotty silence to now?

I changed.

Some of the change has been physical. When I brought an end to my weekly posts, I was at a very low point. I had spent months and months feeling lousy all the time. I had little or no energy. I had just started a new drug regiment with fairly disastrous effects. My quality of life was mediocre at best and poor all the rest of the time.

As of this week, I just finished eight weeks of the new (to me) treatment. I feel better now than I have felt in a very long time.

REALITY CHECK: Let me temper that good news. (1) Multiple myeloma is incurable. Still. It will be for the remainder of my life. (2) This is the last approved drug currently available that I have not had before. There is nothing else for me to take, other than combinations of things that I have had before with limited results. (3) I feel much better. I also accept that the myeloma is still advancing, albeit slowly (we hope). To paraphrase my favorite medical realist, Dr. Atul Gawande, the myeloma night brigade is still out there on my perimeter, bringing down the defenses.

With those small reality bites stated, let me just say the overall message again. I. Feel. Much. Better.

But feeling better physically is not the sole impetus to my coming back to blog. The bigger factor—bigger by far—is that I have finally realized once and for all what I'd been paying lip service to for a long time. In order to write, I have to write.

Well, duh.

If I went back through this blog, I would find numerous posts in which I would plaintively write something very much like this: "oh, I want to write, I need to make time to write, I need to honor time in which to write, blah, blah, blah, blah." And after whining about my not writing, I would go right on not writing. Oh. I'd write here and there, but only in the cracks of my life. Even the simple rule of "write 30 minutes a day no matter what" didn't stick.

So what has changed in me? Lots of things. A very good friend just died of stomach cancer. He gave me a model of how to die with grace and love and peace. The last nine months or so of his life, he reached out and savored life, not filling a bucket list, but tasting the world one final time, knowing it was all winding down. 

Losing Doug earlier this week was one change. 

Another change is an internal sea change. Maybe it was getting so low and so sick before the new drug regimen. Maybe it is knowing that this is the last drug and I cannot rely on there being another when this one stops working. Maybe it was seeing my family this summer and seeing Ramona as a different child from the other Ramonas she was previously. I don't know. But I recently realized that I am more acutely aware pf the passage of time—personal, seasonal, generational—than before. (And I was no slouch before.) And I am more aware of the physical world than before, almost intensely so. Dew on the grass, the deep red sunflowers opening, a cold white moon high in the sky: they all stop me in my tracks these days.

As I already said, I am aiming for a post a week. I'll not do inches again, although Anne Lamott's words remain fixed in my head. I don't know where my pen will lead me.

As for carving out time, my phone alarm is set to go off after 30 minutes. I am sitting in the living room penning this out in longhand. 30 minutes is my minimum bar. I'm free to write longer, of course, but going forward I am committed to 30 minutes daily be with with pen and paper or keyboard and screen.

I have been writing poetry all summer. I'm getting my column back on track at The Myeloma Beacon. I'm ready to return to my three-quarters done MG novel.

I'm ready to write.


Saturday, September 2, 2017

The Best Book of the Summer


Last week, Warren received an email at the Symphony office asking surreptitiously whether I was feeling okay. The sender had not seen any posts from me recently and was worried that perhaps I had taken a turn from the worst. 

This morning I received a call from longtime friends Dick and Milly. Dick came right out of the gate fast: he reads my monthly column in The Myeloma Beacon (and perhaps this one too) and was concerned that I wasn't doing well because he hadn't seen anything from me recently. After I had assured him I am fine, really, he said "good!" and passed the phone over to his wife.

August was a grab bag: treatment, zucchini bread (24 or 30 loaves to date), school mediations (yes, we have started already), poetry, a benefit concert, tomatoes, and most of a solar eclipse (although not as much as Ramona got to see in Vancouver, Washington). Threaded throughout it all has been books—so many that I cannot recall most of them except in snatches. Bad Feminist by Roxane Gay (highly recommended), $2.00 A Day (which I am reading for the second time), a splendid new biography of Henry Thoreau by Laura Dassow Walls just in time for the bicentennial of his birth, some memoirs (always a favorite genre). 

And then, thanks to a glowing review that piqued my interest, I found and read what is clearly The. Best. Book. Of. The. Summer. 

The book is Wild Things: The Joy of Reading Children's Literature as an Adult, by Bruce Handy. 

Handy is only two years younger than I am, which means we share some common touchstones in both our reading and our childhood/adolescent experiences. That made his book fun to read, even if, unlike Handy, I did not discover the Narnia books until Ben was young. But it is the sheer love of reading and the love of children's literature that snared me immediately. That Handy references many books that I (a) love, (b) read to my children, and (c) still read from time to time sealed the deal.

Handy writes with humor, an occasional snarky comment or two, and great insight as to why some books work and some books don't. He makes no pretensions about this being a comprehensive look at children's literature; this is his personal stroll through his favorite library, and he brings the reader along for the walk.

Handy starts with Goodnight Moon by Margaret Wise Brown and ends with E. B. White's Charlotte's Web, which he rightfully concludes was one of the finest books ever written. I still have a copy of the White and so can turn to it, but his homage to Brown was so on point that I almost drove to a store to buy a replacement copy. I won't tell you what other titles and authors he works his way through (although the title and the cover should give you a hint as to at least one of them): read it yourself.

I will add that I picked it up this past Wednesday evening, reluctantly set it aside to get some sleep, read some more while the oatmeal cooked Thursday morning, and then finished it off with great satisfaction (and not a little anguish because it was over) Thursday night. 

Of course I read it in great gulps. I could do no less. 

So that was the Best Book of the Summer. Heck, it may qualify as the Best Book of the Year, and given how many books as I read, that's no small beer.

It is a gray and damp Saturday evening as I type these words. The remnants of Hurricane Harvey have been moving through the area for the last few days. I think of all the displaced people, children and adults alike, in Texas, and hope that there are books in the shelters to help shut out the overwhelming trauma of the storm. 

We have had a wonderful (albeit atypical) cool summer this year. Not great for the tomatoes, but not to be beat for curling up in the evening with a good book in hand. Or at hand. Or both. 

It's nice to be noticed. So Becky, this is for you. You too, Dick.