Stumbling

When should I take my next breath? Should I beat my heart now? Do I need to change my body temperature? What is my response to the stranger who just said “Good Morning”? Where do I place my foot to avoid stumbling?

There are so many actions that we perform every day without a nanosecond of conscious thought.  Automated, habituated, ritualized to free our conscious mind to attend to other matters—ones that do require some thought.  This automation is efficient and effective.  It is a beautiful ballet that flows gracefully and effortlessly.  Until it fails.  Until something changes and trips you up.  Until you stumble.

And how is Bailey?

Oh, she is…

Shit!  What do I say?  The autonomic response sequence has failed and a decision tree of questions floods my consciousness. Who are the inquirers? What is their relationship to me? To Bailey? How often are we likely to see them over the next several weeks? Would they want to know the truth? Do I want them to know the truth? Could they provide assistance later if needed? Would they provide assistance if asked? Will it change how they relate to Bailey? I don’t know.  I am not sure.  I stumble.

            Oh, she is… umm… ahem…

Thud.

______________

Maia was a beautiful young Mexican girl, with impossibly wide eyes as black as the loosely braided hair that fell past the mid of her back.  She was proud of her hair, which distinguished her from the other terminally ill kids in the program—the one’s with cancer whose bodies had been ravaged by the chemicals that failed to make them better.  Maia did not have cancer but would nevertheless die in a couple of months from a congenital heart defect—the same anomaly that rendered her heart incapable of supporting a larger body and left her looking 6 instead of 10.  She knew she was dying and, by this point in her treatment, had even accepted it.  What threw her, what confused her, was how other people reacted and how so few accepted this fact of her life.

Hang in there, you’ll get better -- No, she really wouldn’t.

I’m sure your doctors are doing everything they can to get you better -- No, everyone had agreed to stop doing anything to get her better.

She no longer knew how to respond to even the simplest interactions.  Her typical responses no longer worked.  She stumbled.

One day, during a now frequent but brief inpatient admission, Maia decided to experiment.  I wish she would have forewarned me but, as she later explained, I would have tried to talk her out of it.  We were walking down the halls, IV hanger squeaking between us, when a colleague stopped to say hello and ask, “Who is this beautiful girl accompanying you?”  The greeting was not unusual—Maia was a beautiful child who was obviously sick and being treated in a large, cold hospital.  Hospital staff often greeted us and asked about her.  The question was the same, but the response? 

            Hi, I’m Maia.  I’m dying.  How are you?

She said it quickly and matter-of-factly, but with the lilt and melody of a happy little girl. She did not pause or stammer, and there was not even a dash of sarcasm.  “Hi, I’m Maia and I’m dying.”  Now it was the autonomic response sequence of my colleague that failed, it was my inquirer that tripped as Maia yanked my hand to walk on—Maia smiling and me turning to my colleague and shrugging my shoulders.

Maia did this several more times that afternoon and later tried different responses.  She was experimenting.  She was trying on new reactions, as this very young, very sick but very wise little girl knew that the old ones were no longer of any use. 

______________

I need to experiment.  I need to find new responses and develop new action sequences. The old ones are no longer of any use. 

            And how is Bailey?

            She is… umm… ahem… she’s doing well today.

Whew.  Back on my feet, regained my step.  This time. But I am not sure it is the right response or even one with which I am satisfied.  What do you think? 

[Editorial note:  I wanted to include Maia’s last drawing in this post, but am having a hard time finding it.  Hopefully, I will be able to add it soon.]

The Power of Small Integers

An integer is a very powerful thing. Plain and whole, it is solid and clear with none of the vagueness of some non-integers (such as Pi).  It leaves no question, it provides no false sense, it allows no myth or delusion. When it is a small integer, it is concrete and immediate; cold, hard fact. And when it is so small it can be counted with just a few fingers (or less), it is usually bad.  Today I received three such integers.

1 – the number of months for which I should prepare myself.  Turns out that the murmur and arrhythmia that I thought we would manage medically were signposts, but not the problem.  It is the tumor on Bailey’s heart causing the arrhythmia.  The inoperable tumor.  The inoperable blood vessel tumor which, if malignant will spread very quickly to other systems, or cause her to bleed out even if benign. 

3 – the maximum number of months Bailey might live if I pursue no oncological treatment and if we are lucky.

3 – pending further consultation from an oncologist, the maximum number of months that Bailey’s life might be extended with chemotherapy.

These are very small integers.  These are very, very powerful integers.

A Good Day

Sunday was a good day. 

A good day is when Bailey enthusiastically walks with me to Dupont Circle or a favorite coffee shop (for the superior liver or peanut butter dog treats they serve).  A good day involves a vigorous roll and rub on the faux grass at the dog park followed by all the pets and hugs that can be coaxed from the humans. A good day is when breathing is an autonomic activity requiring neither thought nor effort. A good day is when the morning grooming by one or the other of the cats is calmly tolerated (perhaps, even enjoyed). A good day is when going up the stairs is a single melody of motion rather than staggered phrases of notes separated by rests. Sunday was a good day.

I now wake up and look to Bailey for a daily forecast.  I know that, at this point in her life, time is marked by good days and bad days.  I’ve known this since late November or early December—before the holidays, before confirmation of various ailments by various vets, before telling anyone. Now Bailey has good days and she has bad days.  The good days still outnumber the bad days, but I am sure this ratio will change as she continues to age. The important thing, for me, is to plan each day to make the most of each good one, and to maximize her comfort on the bad ones.  So I look to Bailey each morning for the daily forecast (no iPhone app for this).

Sunday morning Bailey arose as soon as she heard me begin to wake.  She greeted me with a smile and a lick, and became impatient when she determined that I was taking an unacceptably long time getting washed and dressed.  The forecast was bright and sunny. For today. Tomorrow morning, and every tomorrow morning, I will need to look to Bailey for the daily forecast knowing that each day will be different, and that not all will be good.  But that is tomorrow morning.

Sunday was a good day.