Alison's Final Essay: Love, Students, and Teaching

Brian McGee here.  Today, I am posting Alison's final essay, which has been published in the Fall 2016 issue of the College of Charleston magazine.

By "final," I mean this is the last essay on which Alison worked.  Alison wrote prolifically, of course, and some of her work will be printed and reprinted in the future.

Here's the full text of the essay:

As I write these words, I am terminally ill and in hospice care.  This is likely my final writing assignment.

Instead of writing an essay, I've been thinking of this assignment as my love letter for Charleston.  Not about Maybelle, my daughter, or Brian, my husband -- though you could say I have them both in my life because of my years in Charleston.  Nor is this a love letter about a physical place.  I won't reflect on riding my bicycle through our beautiful campus (well, I didn't really love riding my bike through sudden downpours and Charleston's flooded streets).  And I won't dwell on the long hours I spent in my former basement office at 7 College Way or drinking coffee and eating bagels at every coffee shot on the peninsula, though I took delight in every one of those moments.

Illustration by Britt Spencer. 

This is a love letter for my College of Charleston students, and for my profession.  Love is the right word, I think, because my kind of teaching is about passionate engagement with, and enthusiasm about, ideas, social problems and people.  I couldn't imagine merely "liking" teaching.

You may be wondering, what have my students done that makes me love our time together?  They have studied and strived, although complaining more than a little about the amount of reading and writing and the difficulty of the material.  The excitement for me and for them -- and the passion -- is in growing to understand how difficult material matters and why difficult subjects must be engaged.

Community engagement has been critical to this kind of teaching.  Years ago, some of our women's and gender studies learning-community students traveled to Washington, D.C., to meet with women in elected office and women who lead nongovernmental organizations.  More regularly, my Gender and Violence students performed community service with agencies dealing with violence against women and children.  As advocates for victims in the Charleston's solicitor's office or as volunteers with People Against Rape and many other organizations, these amazing students did immediate and lasting good.  For me, teaching them was about bridging the classroom and the community.

Calling them "my students," though, isn't quite right.  Because I learned from them, as they learned from me.  And we grew together as people.

If you were ever in one of my classes, know that I love you now for the risks you took, the challenging topics you weren't afraid to discuss, and everything you did to make yourself -- and me -- a better person.

I am sorry, so sorry, that I will not teach and learn from College of Charleston students in the decades to come.  I won't be meeting any more classes for the first time in the Robert Scott Small Building or Maybank Hall or the Education Center.

However, I do leave the College knowing the beauty of my profession.  I leave knowing the great good that can be done when teacher and student are emotionally invested in learning and in the hard work of changing their world for the better.  I also leave knowing that faculty like Claire Curtis (political science) and Marguerite Scott-Copses (English) and Caray DeLay (women's and gender studies), and so many others at the College, are all that is good and right and wonderful about professors and their profession.

Guest Blog: Baxter, Waiting

Note: This is a guest blog written by Eliza McGraw, Alison's friend.  A shorter version of this essay was read on Eliza's behalf at Alison's funeral.  The reader was another friend of Alison's, Christy Burks.

I am heartbroken not to be with you all today, but wanted to share some of my thoughts about Alison.

            

Alison and I met in graduate school at Vanderbilt, when we were 21, and we stayed close all these years, so I have way too many stories I could tell. I can see her so easily: Alison laughing and holding her hair back, Alison reading with Baxter, her giant white shepherd, draped across her lap, Alison singing with Maybelle.

Maybelle with Baxter.  Baxter died in 2009.

I know that among so many other things Alison was an extraordinary activist, speaker, mother, and teacher. But here's what I want to say: she was an exceptional, inspired scholar. We are lucky to have what she gave us, but we are also going to miss the body of work that she would have produced, and be the less for it. She wasn't finished, and now there's going to be an empty space on the bookshelf. I just know she had a lot left to say, and to write. 

Alison's work always showed a certain kind of expansiveness, a willingness to reach for a more complex theory or idea. She didn't shy from elucidation but she wasn't didactic. While she wrote the first drafts she questioned everything, but in the final versions of her articles or books, her reasoning was sharp, assured. Her mind was everquesting, thoroughgoing. She had an enviable ability to hone ideas without overgeneralizing, fortify concepts without repetition.

Also: Alison was so generous. She sometimes credited others with what I would have to point out were actually pretty original conclusions. In her acknowledgements for Out In Public, she informed readers when my book was coming out. (For those of you who never read the acknowledgments: that's not typical.)

I visited Alison earlier this summer. We'd stopped talking about work by then. Instead, we leaned back on another shared constant: our animals. We took a walk to see some ducks she had grown fond of, and coming back from visiting the ducks, we started talking about our favorite animals. Many of them are gone, and we got onto the topic of Philip Pullman's His Dark Materials series, which describes people who lose their animal companions as "severed." In one of the books, these people reunite with their animals after they die. (Right now, I am imagining Alison telling me I am veering too close to plot summary.)

Anyway, Alison said she liked that idea, and while I also liked the thought that she'd see Baxter again—that somehow, Baxter was waiting for her, chin on paws—it was all too much for me and I started to cry. Alison cried too, and we walked along like that, two crying people, for a little while. I said something else about the Dark Materials series. Alison listened. Then she said, slowly, "But, you know, there are some pretty serious problems with those books. The women in them, that mother. . ."

Alison was a scholar to the very end. She wouldn't simplify and she wouldn't boil down. She could love the quote—cry over it--and still see its problems, turn the text over in her mind, consider all the angles, refuse to commit to one. I laughed, standing in the hot street, holding onto her arm, my tears falling, and Alison laughed, too.

She's always been ahead of me.

I miss her so much.  

Additional Information about the Funeral

Brian here, with information for those attending Alison's funeral tomorrow at the Unitarian Church in Charleston (4 Archdale St.), or hoping to watch online. 

Parking.  Folks attending the funeral have the option to park at the Queen Street parking garage or the Majestic Square garage, where normal parking charges will apply.  Those affiliated with the College of Charleston may choose to walk the short distance from campus.  There is no parking available at the church.  Additional parking questions should be addressed to church staff.

Seating.  While the Unitarian Church has a large and beautiful sanctuary, we have planned for the possibility of a large congregation.  Overflow seating will be available, if needed, at Charleston Day School, which is conveniently located directly across the street.  The service will be streamed live for viewing in the overflow space. 

Childcare.  Childcare will be available during the service. 

Reception.  A reception will follow the service in Gage Hall, which is located next door to the Unitarian Church. 

Online Viewing.  We have arranged for live video streaming of the funeral at ustream.tv/channel/preshow-testing. 

The webcast will begin a few minutes after 3:00.  Viewers who open the webpage before the webcast begins may need to refresh the page to initiate the stream.  Please be patient if there are technical challenges. 

Alison’s family is deeply appreciative of the love and support we have received in the days since Alison’s passing.  

Guest Blog: Alison's Time

Note: This is a guest blog by Brian McGee, Alison's husband.  

To share a life with Alison Piepmeier was to be constantly aware of her uneasy relationship with time.

Alison’s unaffected brilliance, which she wore as casually as her Star Wars tee-shirts, was enough to assure her professional success.  On the strength of intellect alone, Alison had the ability to stand out in a crowd of the smartest and best-educated people on the planet.  And she did.

But wit and erudition weren’t sufficient to make her the enthusiastic presence, the cheerful dynamo so many of us came to adore.  Often, it was Alison’s anxious awareness of the passage of time that provided the abundance of energy she channeled so effectively to teach, to serve her community, to mentor students – and always, always, to write.  It was Alison’s anxious awareness of time that frequently had her finishing tasks and moving on to the next challenge hours or days before deadlines. 

For Alison, doing more was always the goal.  Spending more time with students in need.  Creating a more just and inclusive campus and local community.  Writing more articles.  Spending more time with her family and friends.  Organizing more learning activities and adventures for Maybelle. 

Alison seemed to do everything, and she did everything well.  Always, though, she wondered if she was doing enough, even as she wrote books, journal articles, columns, and blog entries.  Even as she taught, parented, and seemed to go and be everywhere in Charleston. 

Of course, a brain tumor, surgery, and chemotherapy changed her relationship with time.  Alison now had to sleep more, live with the constant possibility of a seizure, and take medications at the right time.  She had to organize a life in which she relied on a bicycle as her primary transportation, because for several years her condition prevented her from driving a car.  (Happily, she was able to drive again in her last few years.)

More fundamentally, Alison had to confront a steady drumbeat of reminders about her own mortality.  She had to live with the ability of medical professionals to predict however imperfectly, the most likely dates of her demise.  For Alison, memento mori was no gentle warning about a distant future.  Tempus fugit. 

Focus was never Alison’s problem, but nothing was quite so focusing as her physician’s affidavit stating that she had 6-12 months to live.  Nothing was so anxiety-inducing as the realization that she had to prepare for her daughter’s life after her own death. 

As she approached the end of her own time, Alison was magnificent.  She remained an engaged parent, even as her physical abilities noticeably declined.  She also wrote, and wrote well, and wrote movingly, even in her final weeks of life. 

We all wanted, desperately, for Alison to have more time.  No one deserved time more than she, and, if given, no one would have made better use of it.  But no one who knew what she accomplished would question what was done in Alison’s time. 

There was no better physical evidence of Alison’s relationship with time than the cheap watches she constantly wore.  A publicity photo many of us have seen of Alison shows her wearing an all-black, plastic watch that cost $12.  More recently, she wore a slightly more expensive Timex.  The luxury of a $25 watch was permitted only because I bought it for her. 

Alison's watch.  She never, ever set the date.

Alison wanted her watch to be plain and functional, preferably with a glow-in-the-dark setting.  And her watch had to be waterproof, because Alison desired never to take it off.  Alison needed to maintain her constant communion with time, a need that a cell phone couldn’t satisfy.  In the shower, or at 3:00 in the morning, Alison always could measure time’s passage against her goals for the week and the demands of her schedule. 

In her final days, Alison slept constantly, and peacefully.  She opened her eyes only a few times a day and was never truly awake. 

But I wasn’t surprised when the slumbering Alison occasionally lifted her left arm and turned it, very deliberately, as if to consider the patch of untanned skin where her watch should have been. 

Even as her time on Earth ended, some part of Alison could not leave time be.  

Obituaries, the Funeral, and Chewbacca

Today's Post and Courier carries an obituary for Alison.  ABC News also ran a story about Alison.

The funeral will take place on Friday, August 19, at 3:00 p.m. at the Unitarian Church in Charleston (4 Archdale St.).  A reception will follow the service at the Church's Gage Hall, which is next door to the Unitarian Church.

Alison loved the UU faith community, which supported her so wonderfully during her illness.  We thank Rev. Reed and the entire Unitarian Church family for all they have done for Alison, Maybelle, and me.

Here's the family-approved obituary, which includes information for donations to the Alison Piepmeier Scholarship Fund.  If you have expressions of sympathy for any member of the Piepmeier family, you are very welcome to use the comments section below:

"College of Charleston professor and writer Alison Massa Piepmeier of Charleston, SC, 43, died August 12, 2016, six years and many treatments after being diagnosed with brain cancer.  

"Piepmeier was born and grew up in Cookeville, TN, where she attended Tennessee Tech University.  She earned a doctoral degree in English from Vanderbilt University, where she taught for several years.  Piepmeier came to the College of Charleston in 2005 as the Director of the Women’s and Gender Studies Program, a position she would hold for the next decade.  In that role, she successfully led the effort to create a separate academic major in Women’s and Gender Studies at the College of Charleston. 

"An accomplished scholar who had recently focused on disability studies, Piepmeier published two books, one edited volume, and many academic articles. She was a guest lecturer or scholar at several universities and was a former officer of the National Women’s Studies Association and a former president of the Southeastern Women’s Studies Association.  At the time of her death, Piepmeier was conducting research on the high incidence of abortion for fetuses with a risk for Down Syndrome. 

"In Charleston and nationally, Piepmeier was a frequent media commentator on social justice and on disability.  Her columns and academic research were featured in leading print and online news outlets, including the New York Times. 

"Piepmeier was best known in Charleston for her column on Southern feminism in the Charleston City Paper.  Her final column, in which she acknowledged her imminent death and expressed thanks for her “beautiful life,” was widely read online and led to stories at abcnews.com and the website of Us Weekly. 

"The online magazine Charlie recognized Piepmeier in 2014 as one of the 50 most progressive people in Charleston. 

"Piepmeier is survived by her daughter, Maybelle Biffle-Piepmeier; her husband, Brian McGee; her parents, Lee and Kelly Piepmeier of Cookeville, TN; her brother, Trey Piepmeier, and his partner, Olivia Miller, of Greensboro, NC; her brother, Aaron Piepmeier, Aaron’s wife, Mary Piepmeier, and their daughter, Margot, of Greensboro, NC.

"A Memorial Service will be held at the Unitarian Church in Charleston, 4 Archdale Street, Charleston, SC 29401 on Friday, August 19, at 3:00 p.m.  A reception will follow in the Church's Gage Hall. 

"In lieu of flowers, Piepmeier requested that gifts be made in her memory to the Women’s and Gender Studies Program, 66 George Street, College of Charleston, Charleston, South Carolina 29424, or at giving.cofc.edu/piepmeier.  These gifts will help establish a scholarship in Piepmeier’s name."

P.S. A gift from her brother, Trey, which Alison adored, was an oversized Chewbacca action figure.  Chewbacca was put in a place of honor in her bedroom while Alison was in hospice care.     

Alison loved Chewbacca and Star Wars.  And her movie boyfriend, Han Solo.

Alison, the Columnist

Alison's long and happy relationship with the Charleston City Paper is now coming to a close.  Thank you, Kinsey, for this lovely tribute.

The Announcement No One Wants to Write

This is Brian, with the post I never wanted to write.

Alison died peacefully this morning, as I kissed her and stroked her cheek.  Her parents and older brother were here and were able to say goodbye.

Arrangements will be announced at a later time.  Services for Alison will take place in Charleston.

I thank all those who have loved and cared for Alison and Maybelle over the years.  I am grateful to have been a part of the life of this beautiful, loving, talented woman who has forever transformed my life.

The Briefest of Guest Posts

This is Brian, in today for Alison.

Rachel Paula Abrahamson, senior parenting editor at Us Weekly, has written about Alison's Charleston City Paper column.

More on Endings, and Giving Thanks

Well, it's weird to be described as a journalist.  My apologies to those of you with real journalism degrees.  See the story at ABCNews.com.

As a reminder, folks, reading and typing aren't really my thing these days.  I can dictate some text and identify broad themes, but I am getting lots of editorial assistance.  Love you, Brian.  Thanks, Kelly.

Love, Loss, Sadness, Gratitude

And princess parties.  All covered in what may be my last column in the Charleston City Paper.

The City Paper has been great.

A Beautifully Mended Princess Leia

So many things have been challenging, as you all know.

Okay, the bad news is still the bad news.  If you have read this blog, you know my diagnosis.

Today, though, I want to celebrate something wonderful.  The Princess Leia coffee cup has been remade.

And here's the other side!

As I wrote in the Charleston City Paper, I have loved this cup for over a decade.  Now, I can love it again, as a work of art.  As an inspiration at a time when I can too easily feel broken.

This is a big deal.  This speaks to who I am and what I care about.

Yes, I have cancer. Yes, it sucks.  For today, though, I am inspired.

Brian's Postscript:

For this amazing and elegant work of kintsugi art, we have to thank the kind and talented folks at Lakeside Pottery in Rehoboth Beach, Delaware.  Patty and Morty, the owners, have repaired and restored ancient and priceless pottery, but they quickly took on this project, for Alison's sake.  Thank you for this incredible work!

Alison and I nominate Lakeside Pottery as the very coolest business in Delaware.

Today, at Duke

I'm dying.  That's confirmed.  That's the bottom line for today's post.

Here's the longer version of this story.

I was at Duke University Medical Center today.  I've been getting brain tumor treatment at Duke for going on seven years.

These people at Duke are amazing, warm, caring, and very good at their jobs.  I love them all.

I went to Duke today to have an MRI and to talk with the team about what the MRI results mean for me.  I've assumed for the past few weeks that the news would not be good.

What's happened, so very dramatically, in the past few weeks?

• My speech is getting worse.  I say the wrong words pretty frequently.
• I have a hard time reading or typing anything on a computer screen.  Thank god for voice recognition software.
• Using my right hand has become increasingly difficult.
• My sense of balance is really bad.  I fall down very easily at some times during the day, and those times are difficult to predict.

These changes have been such a surprise.  I've never before experienced changes this quickly, as a result of the tumor.  My body is so very different than it was just a month ago.

As I've written before, I have already been told that I likely only have months to live.

After a day of driving, MRI scanning, waiting, and talking, here's what I learned that's new:

• My brain tumor is much bigger. The tumor is now in places it's never been before.  And, not surprisingly, my brain is swelling from all the tumor growth.  
• All of my symptoms are fully explained by the changes in the tumor.  

Over the past seven years, I have had two brain surgeries, a once-in-a-lifetime radiation treatment, every chemotherapy drug worth trying, and tumor-treating electrical fields.  I'm not a candidate for any clinical trials.

There are no treatment options left.  There's no reason to stay with the treatments I am now on, as they haven't been effective.

So, what comes next?

In a matter of months, I am going to die.  In three months to a year, I will be gone.

These words are hard to write, because I want to live.  I am sad -- sick to my stomach -- about my imminent death.  I've cried today.  I will cry tomorrow.  I can't imagine a day without tears any time soon.

I want to live for my daughter, my family, my husband, my friends.  I want to teach, to write, to try new things.

Most of all, I want to see my daughter grow up.

We can't know how long I will live, exactly, or how long I will be able to walk, talk, and write.

I will have more time to think this through over the coming weeks.  This is what I know:

I will have no more appointments at Duke.  These amazing, kind people can't do anything more for me.

I will spend my remaining time with the people I love.

It is about time for Maybelle to learn how to ride a real bicycle.  I'd like to see that happen this summer.

From now on, I am eating anything I damned well please.

I am extremely pleased that I am no longer going to have to wear electrodes, shave my head, and wear a backpack full of medical gear.  The Optune people are pleasant, but I am totally over having four electrical wires trailing behind me all the time.

I am so grateful for the people who have loved me, cared for me, fed me, send me messages of hope and support.


P.S. Brian helped me with this post.  Because I can no longer write anything this long without editorial assistance.  Which is really irritating, on top of everything else.

It's Our Weekend: Alison and Brian, Together

Hey, folks.  This is a co-authored blog post by Alison and Brian.  We are spending most of our weekend together in North Carolina.  Call it our honeymoon, if you’d like. 

From Alison:

You may have read my recent Charleston City Paper article.  Life is challenging. I feel hopeful, even now.  But I’ve also cried a lot.  A lot.

Spending the weekend with Brian, though, has been perfect.  It’s been exactly what I needed. 

So, Brian and I are in Flat Rock, North Carolina.  I’ve loved it.   

From Brian:

Alison and I have been at a slightly funky mountain resort near Asheville.  This place is quiet and beautiful, with rustic charm to spare. 

So, what’s here?

Walking paths?  Yup. 

An impressive waterfall?  Check. 

A lake, with boats and canoes for the guests?  Absolutely.

An albino peacock wandering the grounds?  Strangely, that’s also a “yes,” along with the goat farm and the organic garden.  Note: The organic garden isn’t really my thing.

The resort also has an outstanding restaurant.  Yum. 

Dating back to the nineteenth century, Charleston folks with names like Memminger, Aiken, and Rhett have been building homes and buying land here.  So, there is more than a little South Carolina flavor to this charming North Carolina town. 

Only my mother will care, but I will also acknowledge that my Reavis ancestors once lived in this part of North Carolina, before the Revolutionary War.  That’s your shout-out, Mom. 

It’s been wonderful getting away with Alison. Wonderful 

From Alison:

All right, people, it’s my turn. 

Walking is getting challenging, presumably because the brain tumor is changing.  My right leg doesn’t always do what I want it to.  The right arm also can be harder to control these days.

My body has changed quickly, in ways that can make a vacation harder to take.  While I still live a full and happy life with Brian and Maybelle, I am not exactly sure what I will be able to do from day to day. 

Despite the frustrations of an uncooperative body, it’s been incredibly rewarding to have this weekend time together. 

Our room is adorable!  It’s covered with wood paneling!  And I went canoeing for the first time in nearly 20 years! 

And, no one will believe this, but Brian actually knows his way around a canoe.  This is particularly important, because I did absolutely nothing to propel the canoe.  Go, Brian!

While Brian was getting life jackets and a paddle for the canoe adventure, I had the chance to sit by myself beside the lake, to hear the birds and insects. 

For just a few minutes, I got to be fully present.  I didn’t have to fight my body, or struggle to write an email, or worry about my next MRI. 

From Brian:

That’s it from North Carolina, folks! 

What a shattered coffee mug says about life

I'm in a difficult time.   Frightening.  Questioning.  Needing my community.

"Broken Pieces."

Conseula Francis

My dear, dear friend Conseula Francis.

What does it mean when someone--someone I know, someone I love--is gone? I don't believe it.  I'll see this picture of her and think, "Damn--she looks really good!  I'll tell her the next time I see her."  I'll sob, but, later, I think, "I need her feedback on my writing."  When I had the latest challenging experience with my own body, she offered for us to be have bagels and talk.  And now she's gone.

I can't believe it.  I can't see her as gone.  How does this happen?  How do I reconcile myself to a world she doesn't inhabit?  Is it fair for me to have those thoughts?  

I've been thinking all day about Conseula's death, but I don't need to share some of those thoughts.  Much of what I'm thinking is about myself, and I don't want to talk about my own issues today.

I want to speak with Conseula. Who is gone.  Who is no longer here.

Conseula was wonderfully fierce and pushy.  She was funny, even when she was pissed off.  Sometimes, especially when she was pissed off.  Conseula worried about her children and their future.  Even in the midst of her own problems, she always, always made time for her friends.

Ten years ago, Conseula and I left a meeting together.  The meeting was about tenure and promotion, and it left us sobbing and terrified.  So, we formed a writing group with Claire, and years of writing and research productivity followed.  All of us became full professors and the best of friends.

I love Conseula.  I already miss her deeply, terribly.  Someday I will comprehend that she is gone.  But not today.  Not yet.  

Marriage!

Saturday morning, Brian, Maybelle, and I went to a beautiful spot at the College of Charleston, near the Sottile House.  The place is filled with flowers and big live oaks.  And Brian and I got married.

Marriage!  Spouses!  Partners!

Maybelle and Brian are SO SWEET!

What the hell, right?  We're in love.  We live together.  We trade off about who has to get up with Maybelle in the night.  We share toothpaste.  And here we are:  married.

Holding each others' hands, getting married!

You get to see the entire gear here:  I have my hair
covered with cloth.  I have the Optune
electrodes covering my head and pushing
electricity into my brain.  The backpack is loaded with
batteries.  And I'm happy!

Although the idea surprised me, almost immediately l said, "Yes!  Let's do it!"  In my life these days, I never know exactly what's going to happen.  I'm beginning a list--the joy list--and Brian clearly belongs there.  Here we are:  we're both here and in love.

Everything has changed.

I'm writing because writing gives me a space, a space where I have a moment to reflect.  I sit here, four wires attached to the backpack attached to me.  My neck is starting to get sore because I don't want to have to shift these wires around.  Just stay here, pack of electronic cables.  I want to ignore, just for a time, what this means.

Oh, Optune. What does it mean to have this all the time?
What does it mean for who I am?

Sad.  I'm so sad.

I was able to be encouraging with Maybelle.  She's so curious about these changes, and she kept talking about my hair being gone.  She ultimately accepted it, although I woke her up as I was getting out of her bed.  She kissed me and went back to sleep.

Hair, phase 1

April 15, 2016:  Starting where I was and ending up where I am.

My last day with my hair.

Currently not all that curly, but still pretty filled with health.  Can I
embrace my new hair to look like my Dad's?

Things are happening very, very quickly here.  The last time I wrote a week ago, I talked about what I was doing next.  So here's the quick update:  on Friday, April 15, 2016--tomorrow--all my hair will be cut away.  And that's it--they aren't allowed to grow back.  Every couple of days, I'll have to shave it so that no hair can be there to keep my skin and blood from connecting with the Optune (here I'm showing a video of a guy with his Optune).

Oh, my hair.

Check it out!  MY FIRST YEAR AT CHARLESTON!  And Claire was
so cool that she went on a six-hour hair trip with me!  We're both so curled.
We look like cool sisters.  (Still the case.)

Catherine's hair looks different, as does mine.  I love my hair here. I love its
length, and its mild curls.  I love you, too, Catherine!

I have no idea where my Dad and I are (there seem to be
guns in the background!), but here we are:
my Dad makes a classical Lee Piepmeier scowl,
and my curly short hair.

So now I'm agreeing that it has gotten less hair.
I'm recovering from the radiation that took
some of my hair.

Maybelle's hair is straight.  Even when it's short, my hair is curly.  This
is a picture from two weeks ago.  Soon my hair won't look like this.

Changing my body would help and terrified me.

Preface: What is written below is the result of my challenges with language.  Brian did some minimal editing, but you will see some evidence of the problems I am experiencing. 

*****

A couple of weeks ago, my ability to find words was getting harder and harder.  Getting harder to talk, write, focus.  I went to a guy who does eyes, and after a series of examination it was clear that I have some vision problems.  Where communication and vision are concerned, I'm having a hard time because of a brain tumor.  I talked with Scott, my local neuro-oncologist, that day.  He got an MRI scheduled at 7:30pm on Friday, and he talked with Duke's neuro-oncologist before he called me.  Today, five days later, I've finished a three-hour conversation with the wonderful medical people at Duke.

The brain tumor is growing.  Fast.  For months, since September, the chemo was working.  The tumor had stabilized.  It was great!  And now, in March, everything has changed.

I've been emailing some friends and family with a very close, intense summary about what's happening.  And I guess it's time to do it here, too.

Here's what I wrote on Friday:

I had my MRI last night at MUSC.  This morning, Scott Lindhorst at MUSC called to say that the tumor is growing.  His exact words were that the tumor growth is "subtle, but noticeable." 

At Duke, I got to pick it up, to feel its
heavy head, its head showing that this
person has had to make this work.  Not
excited, but feeling that this is the last
possibility to keep my life moving forward.

He talked to Gordana (my important Duke neuro-oncologist) before he called me.  They want me to go to Duke on Wednesday to make a plan for the next steps.  They're working very quickly on this.  I'll also see Scott on Monday morning and will get to see the MRI scan results.

I'm now back taking the steroids I've been on before.  Based on my previous experience with the steroids, I'll eventually look a mess (puffy), but Scott said the steroids might reduce swelling.  As a result, the steroids also might help me to speak and write more effectively and help with my vision.  To which I say, Hell, yeah. 

After seeing Gordana, we MIGHT MIGHT MIGHT also consider this: 

http://www.optune.com/how-to-use/applying-arrays.aspx 

That involves all my hair being cut off and my entire head getting covered with electricity.  Hello, writing folks!  If my writing gets into gear, I am going to write about this.  Best friends? You are some of my writing team. 

The oncologists aren't terrified, but they're considering this option, along with other chemotherapies.  I'm accepting all support, and am open to all possibilities.  Brian said he's happy to learn more about this and the other plans.

Like you did the last time, send messages to me rather the whole team.  Thank you.   

xoxoxo

Last night, I wrote,

Alright, team, we're here in North Carolina.  At 9:00am tomorrow, we're going to be sitting with Gordana (neuro-oncologist I've been working with for years).  Brian will take notes and ask questions.  The two of us will be asking questions.  And then I'll have information that I'll sit with. 

Informations.  Options.  Questions. 

I'm a super-forward-going person right now.  We're going to Duke!  We're going to be waiting in the cancer area!  Let's do it! 

But there have been times during today's ride in which I've been thinking about the future.  You know they mentioned that scary Optune thing?  Where electrodes are glued to my head, and that's the situation that'll be attached for the rest of my life?  Carrying a bag with my stuff in it.  No kidding--I'll living with Maybelle while I'm covered in electric blopps.  I had a nightmare about it last night. 

This isn't the only thing that could happen, of course.  I'm going to have options.  But the options are getting smaller, which has led me to think about what matters.  What do I want and need?  What do I value?  What matters to me?  Where are my fears, and what are my hopes?  What do I value?  What do I want and need? 

Obviously I should be blogging, but I'm tired, and there would be too much explanation. I will keep you posted. 

Love to all of you,
Alison

Today:

Here's the quick story: 

Brian and I were at Duke for three hours.  The big discussion:  whether or not I should try Optune.  You saw it in one of those previous emails.  It's new, promising, and unproven.   

I'll now be going on a different chemo drug, called carboplatin.  I'll also continue to use Avastin.  Surgery almost certainly WON'T be an option. 

Right now, my brain is getting worse. I'm looking at options, but few, and the doctors don't have much hope about those options for the long term.  Yes, different chemo might work, but we don't know how long this will last. 

I cried and cried.  Sharon, one of my favorite medical professionals ever, sat beside me so that she and Brian had both my hands.   

I'll write more.  I need to think.  In some ways it's much better than I feared.  But it's a totally different world. 

Love you all.

I guess that's what I have right now.  I'm exhausted, but I strongly suspect that at 4:00am I'll be awake.  The other night I was going to get out of bed so that I could put myself to sleep by reading.  And then I remembered: reading can be too much. So I tossed and turned and was so, so sad.

Smell

I'm repulsive.  A happy article for the City Paper.

LH mercy, folks.

Originally, this thing moved in a weird way.  Now it's gone--just a normal
picture of Catherine, Maybelle, and me.

A month.  It's been a month since I wrote here!  I kept planning that I'd write for my issues.  Blah blah blah.  Here I am.

Writing is challenging these days.  Speaking is difficult.  I have continued communication that seems to shift.  More and more difficult.  I am struggling--rest assured.

I've had to read this blog for three times so that I'm can get it across.

So let's talk about what's going on.

• I'm learning how to do online teaching at my school, and it's kicking my ass.  Others scholars are going along.  Meanwhile, I am spending 10 hours or more. per week (more than this?  15?  20?)  It's so hard.  It's time to dig into my wonderful teams every week. I heard this from a colleague.  She's dong this training once a week.  I'll see what I can do--we'll, I'll try. Kicking my ass.
• Here's an awful change:  I couldn't remember Maybelle's name twice recently.  Couldn't remember.  May...Mother fuck.  My daughter.
• I'm teaching a class on Tuesdays from 4:00-6:45pm--a long time, while I get more and more exhausted.  Once a week.  A great group--questionings, speaking, doing so in for conversation.  As the conversations emerge, my exhaustion can grow.  The students are great.  I'm having a great time.  And let's acknowledge what I deal for:  it's hard.  This is a new class.  I decided to teach something new, a 120-level special topics course l that me do let what I wanted.  So the class is Living Different Lives: Feminist Disability Studies (and other ways we’re different). That's the title.  We're having a great time. And it might be challenging.
• Continuing to have the chemo every other week. Following with exhaustion. You have read about this before. I hope that Chris will publish what I've been writing.  

There you go. Happy Sunday! Maybelle, Brian, and I are about to have some cinnamon rolls.

Great news, and my feelings of uncertainty

I'm spinning.  I've felt worse about the chemos--but the tumor isn't growing, is hanging out, right there as I breathe.  But not growing.  

I'm surrounded by people I love, and they're sending some good vibes my way.  I don't rejection those vibes.  But despite the vibes, my mind sometimes feels like is changing.  It's become who I am:  I'm a person who has a brain tumor, and whose professional is shifting.

Here's the good news--and it's truly good:  we went to Duke last Thursday, and my three experts said that my brain tumor isn't growing.  Gordana said that since I'm six months into this round of chemotherapy, a lack of tumor growth is a sign that it's going to keep working.  We don't know, but it's a good position.  Safe.

When I got out of the meeting, I wrote to all my family and close friends:

I just learned that my tumor isn't growing.  "All is well," said Sharon, one of my favorite medical people.  I'm very grateful. 

xo,
Alison

 I got the perfect, brief responses:

"Woot!!!" "Yay!!!" "Excellent news! I love you!" "I'm going to a lot to write about."  "I'll every moment." "Such wonderful news.""Savor every moment." Trey and Aaron emailed.  My dad and my mom shared such of what they'll to share their love.

I have no idea how Trey found this,
but it seems like it's celebrating.

I do love feelings like that, the ways that I'm surrounded by the people I love.  But my love is...a paradox.  I know I've been paradoxical, and I'm sure I'll say it again.  I feel so grateful, and also sad. Go back and read my post, what I sent to my team.  These readers send back a line of beautiful celebrations, because it's a big deal.  Having the Duke professionals share that the tumor isn't growing--this is great.  And I felt that relief!  But note that there are no exclamation points.  What does "All is well" means--that's calm.  "I'm very grateful."  And I was--I am.  At that moment, though, I wasn't excited.  I was grateful.

Paradox, right?  I'm grateful.  Feeling myself reaching out, but not with big hugs and laughter.  Grateful.  I'm getting both, but that means that I think we're in the middle.  Yes, this is great.  And yes, we don't know what to expect.

This week I had my Charleston chemo.  I've felt so tired that I've slept for two solid days.  This is normal.  The thing that I hated was that while I slept, I had nothing but nightmares.

But here I am.  Loving my daughter.  Taking my time this morning to finish my blog.  Awake right now, and it might allow me to do the things I'm doing at school.

I have nothing else to say!  But I wanted to throw things out there, since I haven't shared with you all for a while.

Sad

When I started writing the blog, I tried to describe everything that I'm experiencing, but those thoughts keep coming back to sad.

Damn, I am so sad.

My willingness to feel this sadness came while I was in her bed with Maybelle.  "Snuggle," she requested as I was drying her off.  A snuggle sounds good to me, so of course I did.  We read three books, and at that point she was exhausted, so she turned on the white noisemaker, turned off her bedlight, and in minutes she was asleep.  I was lying beside her, smelling her sweet hair, listening to her breathing, feeling how long her legs are as one of her feet is pressing into my lower leg.

I wanted to fall asleep there with her, but the sadness is what emerged.

I lay there in bed and thought about Maybelle.  I felt--feel--really happy about her, imagining what her life is like.  I was even happy recognizing how irritating she could be.  And then I felt sick with sadness about the fact that I won't be in her life.  I'm glad that I'll die before she does, no matter what, but I want to see her more, longer.  

Okay, as I wrote this sentence I realized that my parents are hoping that, too, with all their kids--that my parents will die before we do.  But my parents know that I might die before they do.  That has to be especially painful.

Sadness.  Other thoughts that emerged while I was with Maybelle:  writing.  I love to write, and I'm still able to do it, but communication is often very challenging.  I know I've talked with you about this--I know that I've written this multiple times--but I don't care.  I hate having to read three times before I feel I can sending things.  When I don't edit edit edit, the message is often really confusing in some places.  

Cindi was with me and my neuro-oncologist yesterday, before my chemo got shoved into my chest, and she was talking about communication.  "Sometimes what she emails has parts that I can't really follow," she told him.  I immediately said that was because I sent something quickly, without going over it again and again.  Only friends.  Neuro-oncologist-Scott nodded and said that I'm probably going to be up and down in my communication.  He's a really honest guy, so he went on saying that it's possible that my communication is going to continue being harder, but he said it's almost certain that I'm going to be feeling better at my next meeting with him.  "Today is hard, but I've seen harder writing from you a couple of months ago."

Sadness.

Next I thought about sadness with my teaching.  I've done the foolish thing of teaching a brand new course this semester.  What was I thinking?  The students are great.  They learned about my brain tumor, and they've asked a lot of questions.  They're on board, helping this class to go along well.  And it is going well.  But on Tuesday, two days ago, I felt sad when the class left.  I wasn't furious or guilty--I just felt sad.  Like I'm not quite there.  Like this is the person I am now, a person who should only teach a class once a semester.

And what's happening?

When I learned that the tumor was growing, I cried and cried.  A few days later I was on the porch, on our new house, a house that was there to be together with Maybelle, Brian, and I.  Maybelle was asleep, and I sat sobbing.  

This is how I'm feeling tonight.  I'm not in the place of explaining things, where people ask were I am and I said, "I'm okay."  Right now I'm not feeling like it's okay.  Right now I'm sad.

A random set of blog thoughts, happy and struggling

Phil Nel has written an incredible essay about death, life, and how we can explore our lives in this moment.  Phil writes, "What do you want to accomplish during those years? And how do you want to live?"  I want to spend more time in the thoughts he shares.  I'm eager to respond.

But not today.

Today I'm digging into a set that's become a set of ideas.  On Saturday, a good friend invited me

Trey has gotten me several of these
small pads.  I write in this every
day, multiple times.

to create two lists:  THINGS THAT HELP ME FEEL GOOD and THINGS THAT MAKE ME FEEL LIKE SHIT.  Alright--what do they mean?

The THINGS THAT MAKE ME FEEL LIKE SHIT was pretty easy when I started:

1.  Lack of competence
2.  Speaking--struggling
3.  Terrible mother [Me, not my Mom]
4.  Trying in a terrible way to teach my class
5.  Needing too much for ppl. who already have full lives.

And let's go on and share the THINGS THAT HELP ME FEEL GOOD (do you notice the titles here?  "Make me" vs. "Help me"?)

1.  I am writing effectively.
2.  Donuts.
3.  Excellent friends
4.  Excellent supports
5.  Having contact w/an even broader community
6.  Writing for the blog (& and other things to write, like book)
7.  Relation w/Brian

What do these lists mean?

As I wrote these, I went back and forth.  There was no list made all together--I'd make one or two on a list, and then I'd be drawn to the other.  The Shit list was pretty clear and consistent, while the Good had things that were goofy (donut) and repetitive (writing and writing).  I can read the Shit list and feel painful by every item on the list.  The Good makes me laugh, but I'm skeptical.  Am I really writing? How am I asking my friends and family?  At what point will my friends feel sorry for me, but will move on, knowing that this woman has a brain tumor that's sort to devastating and sort of release?  "Needing too much for ppl. who already have full lives."  Time to let me go before I've actually died?

This is not the place for you, Blog Jumper.  It's not the place of kicking into gear, feeling that you must change my mind because you're sharing hope and attention and respect.  I get that, and I do really appreciate that.  You consistently offer this sort of affection, and I respect that--very much.

But right now I'm not asking to be saved.  Right now I'm considering what it means for me to be 43, someone who's here but will die, sooner or later.  Phil writes,

During your struggles with the brain tumor, have you figured this out? Have you learned how to say goodbye? 

It’s a question that you shouldn’t have to face in your 40s. This may be why I can’t answer it yet, and why my 74-year-old relative can. But I know that the question confronts you, and has been confronting you, throughout your 40s. This is unfair. In fact, it’s unfair of me to expect you to have arrived at a better answer. 

Powerful here.  How I have "learned how to say goodbye?" "This is unfair."  Yes, it's certainly unfair.  But so many parts of the world in which we live are unfair.  There's no clarity.  I've written about this, and I'll write it again:  for many people, death is so terrifying that it disappears.  As Phil says, "This may be why I can't answer it yet."  

Right now I'm sitting in one of my two favorite coffee shops in Charleston.  I hear the sounds of people who are in and out of this place.  Soon I'll grab a bagel or cookie to take to class with me so that I can keep myself energized for the evening class.  Sitting at the blog, writing at the window, is ideal.  Then what does it mean for me to be in a perfect afternoon and evening while I'm aware of my brain tumor?  Every word that doesn't emerge correctly--it's the brain tumor (or else I identify that way, even if it's not).  Things in my body will shift, and I'm worried that I'll have a seizure.  The chemo medicine could bring on diarrhea--is it happening/  I'm in an incredibly pleasant afternoon, but it doesn't take away the THINGS THAT MAKE ME FEEL LIKE SHIT.

Here's one more thought, before I leave for class:  my students and I will be talking about Harry Mcbride Johnson's book Too Late to Die Young (2005) this afternoon.  She has a bunch of quotes like this one:  "Mortality is something all people share, a unifying force.  Every life, whether long or short, is a treasure of infinite value."  Yes and no.  Shit and Good.  She's asking us to recognize the differences in bodies, in minds, and she encourages us to recognize that even a moment is precious.  It's not devastation--it's "a treasure of infinite value."

Yes and no.  Death and life.  Shit and Good.

Running Out of Time, a guest post by Philip Nel

In December 1, 2015, Philip Nel and I started a conversation online.  It was started by the book I was reading, Being Mortal, and it moved from there into conversations--his thoughts and my recovery from a couple of days of chemo.  I asked him to post in the blog.  He said yes.  So here we are.  My love and respect heading your way, Phil.

                                                                                        --Alison

Dear Alison,

Thanks for the invitation to contribute to your blog. Since our correspondence (via the blog’s comments) occasioned the invite, I’ve decided on an epistolary essay. This is it.

As I write, I’m returning from a conference (MLA!), both longing for the continued fellowship of friends and recognizing the need to face my many (and multiplying) tasks. I want the conference to go on, so that I may continue learning from and enjoying the company of smart people, but I also face classes to plan, proposals to write, manuscripts (my own and others’) to edit, and so on.

I always struggle with that impossible balance between the need to create and the need to think, between ambition and reflection, between ticking off one more item on an ever-expanding “to do” list and succumbing to sleep. I think that you do, also — though I know your struggle is more urgent. Indeed, as I share these thoughts, I’m aware that you’re living in much closer proximity to your mortality than I am to mine. Unless I’m struck down by illness, accident, or gunfire (hey, I do live in America), I should have several decades left. There’s no guarantee, but — at the moment — my long-term prospects look, well, longer than yours do. So, I hope you will forgive my presumption in addressing a subject that you (of necessity) have probably thought about more deeply than I have.

Although I don’t have a morbid disposition, mortality has been a lingering companion since my

1. Photo of Jack Hardman
(author’s stepfather), 1990s.

early 30s. There are two reasons, the first of which is my stepfather’s passing. Jack’s death was the cancer equivalent of a train wreck: the diagnosis came in December of 2000, and in January (a little over a month later), he died at the age of 72. For months afterward, I used to talk, silently, to Jack. These conversations became a bedtime ritual. Every night, before sleep, I sent my thoughts in his direction, and hoped that somehow they would arrive in his mind, in the great beyond. Though I knew I was not really reaching him, these imagined communications helped me grieve.

The second reason was the twelve-year endeavor of writing the biography of Crockett Johnson and Ruth Krauss, two (married) children’s writers. This was a race against time. Both were born in the first decade of the twentieth-century, and the people who knew them — especially during their early days — were dying. I narrowly missed talking to Hannah Baker, Johnson’s editor at the newspaper PM, and to Kenneth Koch, the New York School poet who taught Krauss poetry. Many others I interviewed died before I finished the book: Johnson’s sister, Else Frank; children’s writers Syd Hoff and Mary Elting Folsom; artist

2. Chris Ware, cover of Philip Nel's
Crockett Johnson and Ruth Krauss:
How an Unlikely Couple Found Love,
Dodged the FBI, and Transformed
Children’s Literature (2012)

Antonio Frasconi; and filmmaker Gene Searchinger. Maurice Sendak died four months before the book’s publication. You don’t need to interview people in their 70s and 80s and 90s to learn this truth: the older we get, the more dead people we know.

But how do we face the inevitability of our own deaths? Religion comforts the devout, though I don’t for a moment imagine that it removes all worry. I was recently talking with a close relative of mine who, like me, is essentially agnostic. She faces the certain prospect of irreversible cognitive decline. We don’t know whether it will be a swift descent into oblivion or a slow slide towards confusion and forgetting. We’re hoping for slowness, and she’s doing her best to keep her mind and body active. She knows that Alzheimer’s or dementia (it’s likely one or the other) will claim her, but — as far as she’s concerned — not without a fight!

Recently, discussing her end-of-life plans with those close to her, she said, “I’ve lived three score and fourteen years. I’ve had a good run.”

A relative of my generation asked her, “If you had a heart attack tomorrow, you’d want to be resuscitated, wouldn’t you?”

She replied, “Not necessarily.”

“Wouldn’t you? You don’t know what the future holds.”

“I know what the future holds. A heart attack, whenever it happens, is a good way to go.”

The frankness of her statement gave us all pause. Yes: I, too, would prefer a heart attack to a slog through the thickets of dementia. But I’m struck by her ability to make peace with her own death. She does not want to say goodbye just yet, but she’s prepared to say goodbye when the time comes.

And that is what we need to learn. Or, at least, it’s what I need to learn. During your struggles with the brain tumor, have you figured this out? Have you learned how to say goodbye?

It’s a question that you shouldn’t have to face in your 40s. This may be why I can’t answer it yet, and why my 74-year-old relative can. But I know that the question confronts you, and has been confronting you, throughout your 40s. This is unfair. In fact, it’s unfair of me to expect you to have arrived at a better answer. So, please feel free to ignore this question — or, for that matter, any question I may pose here.

I know that, whenever I die, I will not be finished living. There will be things I have not learned, friends I have not made, books I have not written, places I have not seen, and many obligations unfulfilled. I also know that when my end arrives, I hope to have done more good than harm. I know, too, that I do not wish to suffer: if my prospects look bleak, others should take no extraordinary measures to revive me. Since I am not religious, I also believe that, as my last breaths evaporate and my heart stops, my consciousness will wane, and then I will cease to be. The End. Roll credits.

I do not know whether I’ll have a chance to say goodbye to the people I love, but I know — as what remains of my self dissipates — I’ll miss them. I hope, too, that, if any mark my passing, they do so not through mourning, but through celebrating life. Throw a party. Help yourself to my records, CDs, and books.  Hire a caterer.  Hire a DJ.  Get to know each other better.  Sing.  Dance.  Eat.  Have fun.

Also, since I vigorously oppose the everything-happens-for-a-reason crowd, they are not invited

3. Ta-Nehisi Coates,
Between the
World and Me (2015)

to this party. Everything does not happen for a reason. To suggest that it does trivializes the suffering of others. Bad things happen to good people, good things happen to bad people. In the words of Lin-Manuel Miranda’s Hamilton, “Death doesn’t discriminate between the sinners and the saints. / It takes, and it takes, and it takes. / And we keep living anyway.” This does not mean that we should respond with indifference. Quite the opposite.  It means we should engage fully in the struggle of living. As Ta-Nehisi Coates writes in Between the World and Me, “you must wake up every morning knowing that no promise is unbreakable, least of all the promise of waking up at all. This is not despair. These are the preferences of the universe itself: verbs over nouns, actions over states, struggle over hope” (71).

This awareness makes me want to live as fully and as thoughtfully as I can. It makes me want to work harder, and to take more time off. It makes me want to write more, and to write less — so that I can spend more time with those I love. In other words, this awareness simply amplifies that tension between increased activity and quiet contemplation, between labor and leisure. It heightens awareness of the problem I described early in this letter.

Lin-Manuel Miranda’s Hamilton
(CD, 2015)

This is why I’m always (to borrow again from Hamilton) “writing like I’m running out of time.” It’s also why I want more time to appreciate “how lucky we are to be alive right now.” (Yes, I am currently obsessed with Hamilton. Why do you ask?)

I don’t know how to find this balance, but I know that it will require me to accept limits, to say to myself: “Look, Phil: if you are lucky, you might have twenty to twenty-five productive years left. What do you want to accomplish during those years? And how do you want to live?” In other words, I need to set two types of priorities, for both work and life. Since I am also an academic, the boundary between working and living is (at best) thin and (often) invisible.

5. Title page for Kieran Setiya’s
“The Midlife Crisis,”
Philosophers’ Imprint 14.31
(Nov. 2014), pp. 1-18

Philosopher Kieran Setiya has what is, I think, at least a partial plan for how to navigate our way through this problem. In his excellent “The Midlife Crisis,” he charts a course by, first, distinguishing between telic and atelic. As he writes, “Almost anything we call a ‘project’ will be telic: buying a house, starting a family, earning a promotion, getting a job. These are all things one can finish or complete” (12). However, there are also atelic activities, projects that “do not aim at a point of termination or exhaustion: a final state in which they have been achieved and there is nothing more to do. For instance,… you can go for a walk with no particular destination. Going for a walk is an ‘atelic’ activity” (12). Other examples of atelic activities include “hanging out with friends or family,” “studying philosophy,” and “living a decent life.” As he points out, “You can stop doing these things and you eventually will, but you cannot complete them in the relevant sense…. they do not have a telic character” (13): “If you are going for a walk, hanging out with friends, studying philosophy, or living a decent life, you are not on the way to achieving your end. You are already there” (13).

This distinction is helpful because (as Setiya argues) the atelic are more fulfilling than the telic. Pursuing goals gives you purpose (which is good), but can ultimately leave you empty because you always have to move on to the next one: “Our achievements, whatever they are worth, are always numbered” (10). So, instead, he suggests, one might pursue telic activities in an atelic fashion: “Instead of spending time with friends in order to complete a shared project […,] one pursues a common project in order to spend time with friends” (15). Or, put another way, “Do not work only to solve this problem or discover that truth, as if the tasks you complete are all that matter; solve the problem or seek the truth in order to be at work” (15).

These days, this is how I’m trying to approach all projects — I’m seeking atelic joy in telic activities. This means that many of my current efforts are collaborative. For instance, I have just given a paper on allegedly “weird” children’s books, co-written by and co-presented with my friend Nina Christensen. Working on it was fun because, in addition to learning from each other, we could both hang out (on-line, since she lives in Denmark). At the same conference, I chaired a discussion on “Children’s Literature Scholarship and Its Publics”: that was great fun to talk with and learn from smart people whose work I admire. With my friend Eric Reynolds I’m co-editing two more volumes of Crockett Johnson’s comic strip Barnaby. And so on. All of this labor will result in good work that should (we hope!) be useful to others, but it will also be fun — because it will all be accomplished with friends.

I expect that this partial answer — indeed, this entire letter — tells you little that you don’t already know. As I said earlier, my sense is that facing mortality puts these questions into much sharper focus. So, you will (I imagine) have already arrived at better and more complete answers than I have.

I’d like to conclude here by wishing you a long and full life, but I worry that such optimism contradicts your experience. So, let me instead wish you this: sufficient health to enjoy however many years remain, sufficient time to guide your young daughter into an uncertain future, and sufficient energy to pursue those projects that are important to you.

Yours in the struggle,


Phil