Thursday, January 28, 2016

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.

Tuesday, January 19, 2016

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.

Monday, January 11, 2016

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

Monday, January 4, 2016

Happy images and sounds

Here's some images that celebrate our holiday.

My parents' front porch.  It's exactly where I grew up.

Catherine and I did our StoryCorps about our lives together:

One of these pictures that captures us beautifully.


Today is our first back to school, and I think all of us are eager and exhausted.  It's January 4, 2016, and here we are with a new day.  Or it may be the day to be grateful for where we are now.

I'm looking sleepy as I finish this blog.

Friday, January 1, 2016

Feminist Body Struggle

This is a another post about the life of a woman with a brain tumor, and the consequences of taking many, many pills each and every day.

Yesterday, as we reached the waning hours of New Year's Eve, I wrote an email to my MUSC neuro-oncologist.  You may not have noticed this, but my cheeks have swollen.  JUST a tiny bit, but noticeable.  My brother Trey observed earlier this month that my cheeks were changing, and he was right.  So yesterday I wrote:

Dear Great-Guy-Who-Won't-Be-Named-But-He's-Awesome: 
I'm a little surprised.  Since when am I a woman who cares about my appearances?  But I read a feminist book last semester about the fact that I can be a radical AND interested in how I look.  So I'd like some thoughts that popped into my mind.  You are the audience:

  • My ability to communicate is, of course, crucial to me, second only to Maybelle (and I'm feeling better at letting my guilt fade as others help).  Gotta start here.
  • But under all the truly important things,  I find that I'm sort of obsessing with my face.  My body, too, sure, but whatever.  I'm looking at pictures from two months ago, and I really look different than I do today.
  • So, what about that?
  • You said you and I could step back a bit from the dexamethasone [a steroid].  When would that happen, and why?
  • Is this appearance—the slightly noticeable but visible face—going to get larger?  If I just keep looking this way I can work looking through it.  But if it keeps getting larger, I will have TOO MUCH material for this book I'm writing.
  • Oh, minor question:  I took dexamethasone pills last night.  I'm planning to do it around mid-day, when I'll be able to eat and have more.  Do I do one more day, or am I done since I'll have gone through two pills, twice?

I had a lot of these thoughts at 3:30am.  Then I went and got an Ativan, and at least I could rest.  But I didn't forget the questions I wanted from you!
Thanks for taking care of our Feminist Body Struggle.
--Alison


My Great-Guy-Who-Won't-Be-Named-But-He's-Awesome wrote last night:

So sorry for the late reply. It turns out you are already on a reduced dose of steroids, from where you were.  The steroids are now only around the irinotecan infusion every few weeks.  I think you're currently experiencing the cumulative effects of the prior more frequent dosing.  I expect the puffiness in your face to stabilize and slowly decrease.

How nice that it's the New Year's Day.

Monday, December 21, 2015

What should I write?

It's been a while since I've written for The City Paper, and I'd like to connect with them.  It's okay if I write about my brain tumor, since I hear about this all the time from Charleston and all over the country.  But I need to write something that's not exactly what I've written before.  For instance, Chris at The City Paper said, "And it’s cool to mention your ongoing trouble with words, but do so sparingly bc we’ve touched on that several times."  I see what he's saying--I do think about communication all the time, but it's not all that exciting for any of you all.

So:  any ideas?  That's truly why I'm writing this.  Give me some thoughts.  I might be inspired and will write an article for the paper.


Wednesday, December 16, 2015

Oh, I hate the IV infusion

Let me start with the good things, which are significant and important:

  • In the "port place" at MUSC's Hollings Cancer Center, nurses kindly fill me up with all kinds of useful medicine.  They're really nice people, consistently, and I know they are doing everything they can to help me.
  • The chemo is working, as I learned last week when I visited my team at the Duke University hospital.
  • I only have to have the IV infusion every other week.
  • I like the socks that my mom got me.
Lovely socks, not too cold for Charleston.

Now, onto what I'm here to write about.  How I hate it here in the hospital.  I've been here once every other week for several months, and it's gotten worse and worse in my feelings about this experience.  It's not that I'm really experiencing awful panic attacks or severe pain--not at all.  But here are things that make me anxious, angry, out of control.
  • This places smell just like the places I've encountered elsewhere in this hospital.  More than anything it smells like baby Maybelle when she was in the NICU, also at MUSC.  She was born, and then she was in the NICU for a full week.  A full week.  You'd have to wash your hands before you entered the room, so every time--multiple times every day--I'd have to scrub my hands with the soap that smells exactly like the smell here.  It makes my heart hurt every time I smell that soap.  I hate it.  I hate Maybelle having to be there in her first seven days of life, only because they were concerned that she had Down syndrome.  There wasn't anything other than that.  After we discovered her fantastic pediatrician, he said that what she needed was time outside every day.
  • Damn it.
  • It can take forever for the medicine to be delivered.  Once in the last month, it took two hours for them to even bring the medicine for the IV infusion.  I sat in the chair, plugged into everything, but doing nothing.  For an extra two hours.
  • That sucks.
  • I'm sitting here right now, getting some prophylactic medication for diarrhea/nausea/agony -- that's a good thing, actually, not one that I hate -- and the nurse just discovered that it's actually going to take longer than she thought, because the doctor wanted to see how much I weigh.  I was 139 pounds a few weeks ago.  Now I'm back at 149--which is very good, because it means I'm moving back to the normal weight of my body (155 since I was in grad school).  She discovered that we're going to have to wait some more, because my weight change required a revision in my dosage.  
  • What the hell!  
  • Now I'm home.  I'm exhausted--falling asleep--but I wish I could take a shower and throw all my clothes in the laundry.  I'm too tired for that right now, but the smell of my clothing is hard to take when the clothing is so near to me.  The smell is the first item on my list of things I hate about IV infusion.  
  • Breaking my heart sometimes.