My Mom Died Tonight (Or Is It Yesterday?)

My mom had a stroke a decade ago and another one last year. She had been suffering from heart failure for several years. She had been hospitalized twice in the past year. My sister-in-law Lucy called yesterday to let me know that my mom wasn't feeling well. Or, worse than usual, anyway. I had already known because I had talked to my mom the day before, and she had literally asked, when complaining about her ongoing health problems, why the doctors wouldn't just let her curl up and die. 

And at 2:00 in the morning East Coast time, my dad called to tell me that mom had passed. He was beside himself, which is not surprising. He is a drama queen to begin with, and if it were me at home with her, I would have been forced to google what you do when someone dies relatively peacefully at home. 911 doesn't seem like the right answer. There is no longer any risk to life and no emergency service that can help the situation.

It's a very practical problem that is the sort of thing my mother would have taken a deep breath and handled. 

But she's gone.

And as self-serving as it often seems in other people, the thoughts of "what she would have wanted" keep rising in my mind: 

She would have approved of my dad's joke that, ever the designated driver, she died on 4/20. She would have approved of my joke that it was the stupid iron supplements that she had started taking that were what killed her. She would have found it funny that my last text to her was that I hope she feels better soon. She approved of making light of, well, everything.

Should we cancel the trip with Antonio to Berklee College of Music this Saturday for New Student Welcome Day? Fuck no! She would not have wanted us to stop living and doing joyous things. 

Should they hold a memorial for her? (As Jose keeps pointing out, they donated her remains to a medical school—shut up, it's what she WANTED—so there can't be a proper "funeral.") I feared that the people most materially affected by her death—my dad and my brother's family for whom she was essentially a domestic worker—would decide to have one. She would not have wanted a funeral, and even if they held one, it really would have only been her family getting together to mourn together because she had all but withdrawn from contact with anyone else. 

What she would have wanted was for us to not make a fuss over her death and to go on, as productively and happily as possible. 

I hope that my brother and dad are eternally grateful to Lucy for dealing with body. Ever practical, my mother had tried to arrange it before her death, but there was an issue with the organization that she had contracted, and Lucy stepped in and arranged for UCSF Medical School to take the body instead. If it had been left up to my dad, he probably would have let the mortuary talk him into buying a $10,000 casket in which to cremate mom's body, which would have absolutely infuriated her ghost, if such a thing existed. I feel like it should be someone's campaign to let poor people know that they can do a double good of donating remains for organ donation/tissue harvesting or medical school training and save the ridiculous expense of a funeral and burial. Some organizations will even return the cremated remains—if you're interested in that sort of thing—after the useful bits have been taken to pass forward life and health. (I also started googling after Lucy told me about the hiccup with the first organization, but I didn't think both of us working the problem made sense, especially since it's more in her skillset. If not for her, I'm sure I, from the opposite side of a continent, would have been the one trying to arrange the donation so I am also thankful for Lucy.)

I have lots more thoughts that I will need to write about because, despite the irrational pull to do so, I can't call her to talk about how to go about grieving her immeasurable loss...

#AutismAwarenessMonth

April is Autism Awareness Month, and I came across an adorable, joyful finger-painted meme that said "Autism is not a disability. It is different abilities." 

WTF?

I have two middle schoolers in my life who are on the autistic spectrum, which is kind of amazing since I have so few people in my life. 

My nephew often just comes across as an asshole. He speaks with a somewhat flat affect, like a bored Valley Girl, he paces restlessly around rooms, and he says totally insensitive and inappropriate shit that will one day get him punched, possibly even by a family member who knows and loves him and is aware of his condition. For example, he was having a complete meltdown one Saturday morning while I was visiting because...his braces were bothering him because one anchor wasn't perfectly centered between the top and bottom of his tooth. Note that he, even in his hysteria, admitted that he was not in pain. He stormed around the living room yelling and crying that he couldn't possible bear this for two years—he'd already had them for a month without a complaint—while three adults tried to help him distract himself from thinking about it. I finally lost all patience and sent him to his room when he screamed at his father, my brother, "I don't give a shit what you think." I was willing to humor his (entirely unnecessary) emotional turmoil up until he started abusing the other people in the room. He went to his room, calmed down a little, came back to perform his upset for us some more, then, not shockingly, he forgot about it for the rest of my visit because it wasn't painful, it was just something he was temporarily obsessing over. (Yes, for a child with ASD, it can be harder to ignore physical sensations or obsessive ideas, but it is possible, just like the rest of us do day in and day out, and like he had done for a month before ruining a Saturday morning for himself and his family before forgetting about it entirely.) He is an honor student, which is not surprising considering his intelligent, educated, involved parents, though he does have an Individual Education Plan with all sorts of accommodations since he is not very good at "executive function," things like paying attention even when he thinks class is boring; remembering that he needs to take his backpack, Chromebook, gym clothes, and pencils to school; and clicking "Submit" on Google classroom after he finishes an assignment. 

The other child I know is profoundly affected. He is also middle school-aged, but there is no mistaking him for anything approaching normal. He is mostly potty trained, but he still needs someone to check to make sure he has cleaned himself and not left the bathroom covered in pee or poop. He is on powerful anti-psychotics during the day to keep him calm and sleeping pills at night to keep in bed, and they don't always work. He too has meltdowns, pacing back and forth, moaning incoherently, and throwing himself on the ground, kicking the floor, which is quite alarming as he is now taller than I am and outweighs me. However, he does not have the communication skills of even a pre-schooler to articulate his state of mind: he has a receptive and expressive vocabulary of several hundred words, but he cannot put them together coherently, and he cannot carry on any sort of two-way conversation beyond confirming or denying simple requests. 

    "Do you want some dinner?" 
    "chickenfrenchfries."  

He can read a little and write and type on his tablet a little, usually but not always enough to find the children's videos on YouTube that he wants to watch at a hectic, chaotic clip. He attends a school for children with special needs, as he would be entirely disruptive to a normal classroom and would not benefit from being included in one. He needs very specialized one-on-one attention to stay on task with even the simplest assignments. He cannot be left alone for an afternoon, will never be able to hold down a job, never be able to live independently. He is the very definition of permanently, totally disabled. 

The idea that these two boys have the same condition, even as an umbrella term, is so absurd. One needs some behavioral therapy, accommodation, and understanding, and the other needs permanent long-term care. That's quite a "spectrum." Neither of them has any sort of special savant talent that can be nurtured and become the basis of a fulfilling, successful life. There is no Sheldon Cooper trade-off of social skills for genius or artistic talent. 

They say that if you know one autistic child, all it means in that you know one autistic child because nothing can be extrapolated from one to the others, but I know two, one at each end of that very broad spectrum. Neither of their conditions has any sort of up-side, and both of their sets of parents would be utterly delighted if their difficult, suffering kids suddenly woke up one morning as totally, boringly neurotypical. 

So whoever these people are who enjoy their autism spectrum disorder and its "different abilities" and want it celebrated, I cannot even imagine.