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Archive for February 21st, 2021

distances

 “Heavy as the setting sun; yeah I’m counting all the numbers between zero and one.”
~ & Run, Sir Sly

I have managed one video call and two in-person visits with Jonah since Christmas – once, like before, at the Visitor’s Center on the Anderson campus, with similar success. Last time, I asked him every so often if he wanted more video or to go back to his house. More video, he kept saying, until our time was up. This time, he wanted to leave about 30 minutes in.

20210115_121025 He smiled when I asked him to, but his real resting face is far more disinterested…

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He was very half-hearted about his McDonalds, too.  Meh.  Then he said “go poop,” and proceeded through the swinging door into the bathroom.  I hesitated, unsure how much he could accomplish in there by himself, post-poop.  At Andy’s apartment it was standard procedure for Jonah to go directly from the toilet into the bath tub.   I gave him maybe 30 seconds, then called “boo?” and walked in.  He had all his clothes off from the waist down – shoes, socks, sweatpants, underwear  – all in a pile on the floor.  “Help wipe?” he asked, offering me his backside.  I was pleasantly surprised that he’d done this to the best of his ability already, so my efforts were more symbolic than necessary.  He washed his hands and dressed quickly, resuming his position on the chair with Jungle Book playing on the TV.  I’ve since ordered him a few train documentaries to try; I’m not sure if he’s as into trains as he used to be.  He can hear the train’s whistle from the school, though he hasn’t been on a car ride to see one in ages.

When Boo decided he wanted to leave, he meant right now, though he waited with something like patience for me to gather up our things and follow him out the door.

The second time I got to see him was at his regular glaucoma appointment up here in Albany.  As usual, two Anderson team members accompanied him; I had gotten special permission for two of us to go with him into the office, given his history of violent episodes there.  He did wonderfully, though, and sat willingly through various exams and machines, used to this routine.  He even wore his mask while the doc was in the room.  She said his pressure was high in his left eye, but that’s his blind eye and not of as much concern as the “good” right eye.

20210107_085258 It wasn’t until I took this photo that I noticed he had two different shoes on.  I know the staff at his house are helping him get dressed very early in the morning for these morning appointments.  It takes 90 minutes to get there, so they’re helping him put on his clothes in the dark.  I was a little annoyed by his 2 very different shoes, but no big deal.  Then I looked at the shoes more closely, though, and saw that one of the shoes wasn’t even on the correct foot.  Try walking around like that.  I was disappointed, to say the least. I could tell that the team members there were embarrassed, but they’re not the ones who ensure he puts his clothing and shoes on correctly.  Thank God my mother doesn’t come to these appointments anymore; there would have been hell to pay.  I took it in stride, however, pun intended, and simply told Jonah’s house manager about it; she assured me it wouldn’t happen again.  She’s awesome, and I’m sure it won’t.

But at the heart of this is a reality I don’t like to think about.  His violently aggressive behavior, often out of nowhere, is at the core.  For example, it’s not that I think the staff person who put his shoes on is incompetent, or even lazy.  It’s that they probably didn’t put on his shoes at all.  Likely he was left to dress himself, lest he attack them.  For female staff especially I envision they’re giving my son a wide berth at all times.  Sometimes I imagine him largely left alone, distanced and unengaged out of fear, and it brings a sad desperation to my thoughts.  He’s still doing well in school, I offer myself in an attempt to self-soothe.  It won’t always be this way.  I know several people there who love him.  Briana loves him, is amazing with him and for him.

Then a nurse called me one day last week to tell me his clozapine levels are very high – 869, to be exact.  A quick Google search tells me a range of 350 to 450 ng/mL is considered high, which was alarming.  High levels are associated with greater risk of seizures along with a host of other possible effects.  So the immediate plan is to lower his 11:30am dose.  It isn’t an easy decision because clozapine (aka Clozaril) is the only thing that’s worked to mitigate his aggressions, which are infrequent lately but very severe.  Pre-Covid, he had 18 months with no aggressions, I remind myself.  I thought they were gone altogether.

As an aside, it took me far too long to figure out how to post this using the “classic” editor.  I think the new one is awful and clunky.  I’ve lost my patience and most of the energy to write.

I’ll probably try to see Boo again near his 19th birthday on March 7th.  I haven’t heard from Andy, though I know he talks to my mother on the phone once in a while.  This sometimes feels like betrayal in a couple different ways.  But their relationship isn’t my business, and if I resent it, that’s my problem.  I’ve been depressed in the way we all have since the pandemic dropped its curtain on the play.  And in that tired-of-winter way, where everything is ice and slop and slog.  Now, also, like some archetypal Helpless Mother, unable to intervene on her child’s behalf or orchestrate a future where his health and everyone’s safety coexist and neither need be compromised.

20210214_151519Getting outside keeps me sane.  Three times so far this winter I’ve donned snow pants and boots, hiking poles, and sometimes crampons, to tackle a few different Catskill and Adirondack trails.  Most recently it was a long loop trail at aptly named Amy’s Park near Bolton Landing, which was a steep hike up in the beginning and a test of endurance after that.  The trail is rated moderate but that’s without 20 inches of snow and ice to tromp through.  Granted, there were footsteps to follow and a well-marked path, but by the end of it I was damn near using my poles as crutches.  Took 5 hours to go up and around that lake.  I bitch in jest, though, for it’s saving my soul and spirit to be in the wonderful woods, all silent and piled with snow.  At first I feared I’d shiver in the cold, but so long as there’s no wind, I’ve yet to be chilled despite temps sometimes in the teens.  Hiking is a workout, and you stay quite warm just moving along.

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See how the snow has crafted a feather from this conifer?  All over the forest, Winter makes subtle shapes and images with an artist’s hand.  In places, I see boughs and branches pressed down where deer have made a recent bed.  Sometimes trees have scattered holes drilled deep by woodpeckers, and along the marshy lake, young saplings lay victim to beaver teeth axes.  The poetry of nature humbles me and brings calm.  I need to remember how much it helps, lest I stay hermit in my house.  So easy to stay hermit, working almost entirely from home.  So easy to live one Groundhog Day after another.  So easy to lose hope.

If you feel this way and are reading this, please know you’re not alone.  This too shall pass.  Spring is coming, albeit slowly.  It’s science.

Hang on and forge ahead.

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