Archive for March, 2020

“Most human beings have an almost infinite capacity for taking things for granted.”
― Aldous Huxley, Brave New World

As of this moment:

Coronavirus cases
World- 642,238
US – 113,677
NYS – 52,318
Dutchess County (where Jonah lives) – 225
Albany County (where I live) – 176

Days since I have seen Jonah:  20

The numbers of it – ever-changing, sometimes doubling, stretched over time.  Time that’s begun to lose its meaning for me, told to stay put, working from home, staying almost entirely in the house.  Even my doctor appointment this week was a video call.

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Jonah turned 18 on March 7th.  I’m grateful I got to see him on the 8th and sing happy birthday with cupcakes and candles.  Of course I didn’t know it would be the last time I’d see him – for how long?  I don’t like to think about how long.

Anderson is on lock down.  The school building is closed.  If you take your child off campus, you must keep them off campus.

Who knows anything about this new normal and how to move forward?  The only way out is through.  The uncertainty is unsettling.

For some people, it’s just boring.  They are mildly inconvenienced.  For others it’s a nightmare.  Maybe even hell.  If we were trapped with Jonah back when he was attacking all the time, I’m not sure we’d all survive it.  I feel for those whose pain, risk, or danger are manufactured or magnified by this Covid-19 culture and reality.

I think about domestic violence victims and waitstaff and nursing home residents.  Parents whose kids are out of school, scrambling to plug in help.  All the small business owners (and everyone) out of work. Out of sorts. Out of toilet paper.

Everyone who lives alone…people with mental illness who feel trapped, or frighteningly disconnected, or uncontrollably anxious – and those with other disabilities, like people who rely on ventilators who must anticipate being de-prioritized if the shit hits the fan.

That there are discussions at all regarding which individuals would get ventilators or medical treatment is frightening in a personal way, of course.  Of what value to society is my son?  Would I ask an average young adult to give up his ventilator so Jonah can live?  What about someone in prison?  In prison for what?  You can go right down the rabbit hole with this, but I won’t.

One thing at a time.

Forgive me my rambling ruminations.  I’m one of the mentally ill folk, neither panicked nor complacent…but very much longing to see my son and my mind all over the place.

I haven’t been away from Jonah for 20 days since never.

So far I’ve had two scheduled video calls from him, with the help of his head caregiver, Briana.  Hi, Bunny! I say, glad to see him wearing the cool blue shirt I got him, the whole front a wolf’s face.  We look at Amazon wish lists together so he can pick what toys and things I send.   I don my happy mama smiles and tell him I miss him – but in a bright tone that implies that everything is FINE.  He is mildly interested, I suppose.  I wonder how much of this he understands and I feel grateful anew for the void of aggression and violent behaviors.

When we hang up, I sit in stillness and close my eyes.  The last image of him fades.  He looks good, my Boo.  Handsome and older.  Briana and the others take very good care of him.  God knows he isn’t easy.  He shadows his favorite care givers for hours, relentlessly present.   No longer a danger, though.  No longer a ticktockticktock time bomb.  The pendulum is smashed.  I’m sure of it now because it is necessary for me to be sure of it now.  I trust completely those caring for my only Boo.  What else is there for Andy and me to do?

Sometimes I deliberately call to mind the scent of the top of Jonah’s head.  The way his hand feels in mine.  His voice, half request and half demand: more kiss?   I hold tight to the joyful memories in which he is laughing and silly or loving and cuddly.

After both calls I allowed myself to cry a little and feel the feelings of missing him, but I do not allow myself to wallow in it, nor become irreversibly afraid.   When the future is a question mark, I flow with the ellipsis of today.  It works, most days.  The danger of the ellipsis, though, is its very nature.  An ellipsis implies more to come, – a more we don’t know yet.  An omission.  There’s no certainty, no finality, no beginning and no end.

Those three dots, like feeling the drag and simultaneously the speed of time in a Groundhog Day kind of way.   Good morning campers, rise and shine!  What day is it?  I ask groggily.  What time is it?  Are my parents okay?  Are there enough masks?  Is there breaking news?  What are the numbers now?  How about now?  What’s Jonah doing?  Did I take a walk this morning, or was that yesterday?  Can I go to bed yet?  Too early for flapjacks?

I’m working two nonprofit jobs from home like a champ in PJs, one cat (usually Gracie) to my right and another (usually Laura) above me, a big old dog (Jack) to my left with his head in my lap.  All pets white, by accident and yet as if by design to fill my home and couch and clothing with white hair of various lengths and thickness – including my own hair, growing in spiky, salt and more salt and a little pepper (it looks darker in the photo).


The most wonderfully good news is that my best friend Erin is all done with chemo – and it looks like she’ll need just a small surgery, thank God.  It was difficult to witness her attempts to prepare herself for the worst, inasmuch as her soul was willing to do so. The hospital stopped allowing visitors at chemo because of Covid-19, but I only missed the last one.  I think our twisted humor and maniacal laughter, right in death’s face, gave her strength – and me, courage – in a way nothing else could.  Fuck off, cancer.

As for Jonah’s school, they are conducting classes as well as they can in each residence. They structure the days carefully, complete with fun activities and as much time outdoors as possible.  Lots of campus walks for Jonah.   When he seems agitated, the walks work it out.  Anderson’s campus is very large and gated all around it, almost as if constructed for just this scenario.

There are weekly Monday conference calls for the families, with updates.  They are being proactive and careful, and Andy and I are so grateful.  Grateful for a lot of things.  Of course grateful for the amazing direct care personnel who did not ask to be heroes but have had the role thrust upon them, like it or don’t.  We send them snacks and popcorn, cookies and chocolate.  Thank you, we say, in a way that wishes there were better words for what we feel.

A month ago today I was in San Diego at a work conference, basking in the sun on an outdoor porch with two dozen others, shaking hands and sharing spaces.   Eating from the same buffet.  Laughing on the plane.  In just one month, everything changed.  Our very lexicon has changed.  We practice social distancing.  We shelter in place.  We are essential or non essential.

And none of us can comprehend how much a 2.5 trillion dollar stimulus package is.   To help us understand a trillion, which is a million million:

1 million seconds = 11.5 days (a vacation)
1 billion seconds = 32 years (a career)
1 trillion seconds = 32,000 years (longer than human civilization)

Boggles my mind.  Magic money!

I wonder if there is a President Cuomo in our future, ushered in by The Godfather Theme instead of Hail to the Chief.  Or Trump using Coronavirus as a way to justify delaying the election for the safety of America.  Nothing he does surprises me – unless he were to magically become a man of integrity and intelligence.  I guess then my mind really would be blown.

If you’re reading this, I wish you well.  Be safe and stay healthy – you know the drill.  I’ll be back with news of Boo! xoxo

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