Book clubs and Priorities:

At any given point in time, I belong to at least 2 book clubs.  English major problems.  (The following may feel like spoilers if you intend to read The Measure.) 

Currently, we’re both reading books about predestination and what measure of control we have over our lives and our choices.  Blood Test explores the idea of DNA testing predicting behaviors, even ones that seem bizarrely out of character.  (I haven’t decided if I’m finishing that one.  I’ve made peace with the fact that I don’t need to persist on a book that isn’t bringing me joy or another meaningful emotion. Update: I let the loan go back to the library.  It would have been harder to stop if I had purchased the book.)  The Measure addresses the length of one’s adult life, via a string that arrives at the age of 22. 

Obviously, a string representing your lifespan reflects Greek mythology--the Fates cutting the string and that’s what you get, no matter what you do.  “Long-stringers” have a long-life guarantee, “short-stringers” a short one, regardless of their actions.  The length of the string does not tell you if these will be healthy years or months, ones in which you work for change or meaning in this life, or ones that you spend paralyzed or imprisoned (literally or figuratively).  

The friend who picked it has been asking us the first question in the reading group guide in the back: what would we do if presented with an opportunity to know how much life is left for us?  Would you open the box containing the string?  It would tell us when, not what happens or how or what we did along the way. 

I’d like to say that I’d keep the box closed, and live life for today with no regrets.  I recognize that does not reflect my past behaviors—my need to tell my sister that we were having a girl after our ultrasound. (Both times. As soon as we got in the car after the appointment.) My urge to have genetic testing done to reassure myself that we didn’t have to worry about inheriting the mutations that my mom carries. 

When we don’t open the box, we tend to assume that we have forever, or at least above the average life span.   Few of us assumes we have a short string. 

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I had coffee with a friend who is making peace with her third bout of cancer, 25 years after her first diagnosis.  Twenty-five years is a long-string time span after you learn you have stage 4 cancer.  She is a planner, and she wants to tidy things up so others aren’t burdened when she dies.  Swedish death cleaning of all her affairs.  Like cats and my mother, she has nine lives. 

Of course, I’m also going to make this about me somehow.   

Thirty-three years ago, when I was a naive college junior, my mom received her first cancer diagnosis.  Reading the letter from my sister, in her loopy high school cursive: “Can you believe Mom has breast cancer?  How scary”.  (It was 1992.  We wrote letters in cursive).  My parents didn’t want to tell me before finals week and risk wrecking my grades.  Stoic, stupid Scandinavians.  

As I worried about her, I also felt the pressure of the strings shortening for my sister and me.  Surely this did not bode well for the two of us.  For years I assumed that she passed on to us a genetic mutation that was dissolving our strings from the end, bit by bit.  This increased after a second cancer was found, more than fifteen years after the first.  Genetic testing did nothing to ease my mind—although she tested negative for the most common known severe mutations, we know that she likely has something awry in her chromosomes.  It’s just not one we have a test for.   

Between her cancer diagnoses, she was found to have late onset hypertrophic cardiomyopathy—one of the conditions which drops young, healthy athletes in the middle of a basketball game.  It’s an abnormal enlargement of part of the heart, with narrowing of the outflow.  There’s no cure.  Only monitoring for heart abnormalities.  Implanting a defibrillator so that you can be immediately shocked back should your heart have an abnormal rhythm or stop. 

The last time I looked, there were more than 80 different genetic changes that can lead to the heart condition (aka phenotype).    If you have a disease-linked gene (aka the genotype), you may develop the condition.  If you do develop the condition, the heart muscle is never really normal.  Our family didn’t fully process this until years after her initial diagnosis and surgery—she had the excess heart muscle shaved off, and the cardiovascular surgeon told us she was “good as new and can run marathons.”  But not quite. 

Mom’s testing for a genetic mutation for the heart condition was equivocal.  There were changes that were deemed indeterminate—not exactly the normal sequence, but not ones that were known to cause disease.  Despite the fact that we weren’t sure what the test meant, I went ahead and had it done.  I knew that if my test was normal, then my athletic daughter wouldn’t have to worry about an enlarged heart.  I assumed that I had a long string for this condition.  I inherited the same indeterminate gene my mother has.  

As my cardiologist keeps reminding me: genotype does not equal phenotype.

I spent the last 30 years certain that my string would be shortened by breast cancer or cardiomyopathy.  Brain tumor and seizures were not on my bingo card.  I still don’t know the length of my string, or what’s going to cut it.  

There is no before, only before you know.  Live life like you have a short string for the things you want to do and see and the love you want to give, and like you have a long string for the legacy you want to leave.