Tag Archives: mentally ill siblings

Recovery, bit by bit

I invite you to watch a video of my sister’s clip file while listening to the audio file (written out below). The audio is nine minutes, the video less. This is a bit of an experiment. It might not be possible to do them at the same time without more than one device because the audio link opens a new window.

 new-recording-8.m4a

It helps to thank my sister’s things as I toss them: thank you for being a place my sister could record her thoughts; thank you for gracing my sister’s walls. I left a trunk load at the donation center this morning: more clothes and books and a framed picture of Ganesh. She loved Ganesh.

She doesn’t get to hurt me anymore.

Mantras emerge. Two days ago, I struggled to remove a twisted wire from a matted picture of the atrium at the Isabella Stewart Gardner. It’s a keeper. The wire wasn’t cooperating. I knew how it might jab me, so I wrapped my fingers in a towel, not a precaution I would normally take. But I heard these words in my head: she doesn’t get to hurt me anymore. All day, I repeated it: “She doesn’t get to hurt me anymore.”

I don’t have to be burdened by her anymore.

Yesterday, picking up a heavy bag of her books sent a twinge up my shoulder. I adjusted the bag and heard the next mantra: I don’t have to be burdened by her anymore. This mantra is especially helpful sorting through her belongings.

She caused this misery.

At the donation center emptying the trunk, I thanked all the things. The second mantra came, but with a footnote. “I don’t have to be burdened by the misery she caused anymore — the misery she unequivocally caused.” Haaah. I could let go of all her bullshit about how everything was my fault. I could forgive myself for ever reacting to that bullshit. My failed poise. My lack of grace. I can breathe now.

There was a recurring question during the years of care: what was the source of her problems. When did things go so badly wrong – or was she damaged from the start? Did her problems arise out of epic, persistent self-destruction or was she so innately impaired that she couldn’t function as an adult? The answer probably didn’t matter. It certainly didn’t matter when she unleashed her fury in a vitriolic tirade.

It’s worth noting that her ability to use intimate knowledge of me and the family to launch personal and savage attacks survived her lengthy cognitive decline. I’m still washing it off.

When she essentially stopped moving and had to wear diapers, I leaned more into the theory of her lack of capacity. Simple goal setting was impossible for her, simple organization, beyond her capacity and had been for quite some time. Her anti-social nature and paranoia may have been hard-wired, too. At some point it became clear that my sister didn’t have the inner or outer resources to be an adult. Even very simple stuff was beyond her.

She can’t do better vs. she won’t do better.

It’s worlds of difference. Judgment lodges in one and falls away from the other.

Remedial reasoning? Perhaps — especially if you met her lately when all she was, really, was a bunch of conditions. But as I’ve noted elsewhere, earlier on she had a little more going for her. Deemed ‘brilliant’ in school, full of promise. She could talk a good game. Back then, you had to converse with her more than once to see she was off her fucking rocker.

Relating to my sister was so pervasively negative, so damaging to my sense of self, so at times, invisibly costly, that I had to rely on certain mental exercises to serve as reminders.

One exercise was to try and isolate her various conditions and consider how it would be if ONLY that one thing afflicted her. So for instance:  how would it be if she were solely physically handicapped? Okay, that would be a nightmare. Clearly, certainly, a nightmare. Pushing her in a wheelchair for appointments, debilitating. Watching her eat, demoralizing. Replacing her furniture when it gave way? Looking for things rated for more than 350 pounds? Tiring, endless.

On the other hand, if she’d only been aggressive, paranoid, and unreasonable, would that have made it easier? Of course not.

Had there been a choice, I’d have taken the physical incapacities over the mental any day. Her oppositional nature alone was so illogical and enraging, that it often had me exiting her apartment to walk around the building a few times, exhaling like a snorting bull.

What if it had been just her executive function that was shot? Still a nightmare. She expected to use me as a Rolodex. I wasn’t supposed to worry when she missed doctor’s appointments. The anxieties imposed were regular, with high stakes. For instance, all those times when she couldn’t call the Department of Transitional Assistance because she couldn’t find the phone number, when she forgot she had access to the Internet, and when she’d lost the form that was due back last week. The psych piece would come in if I offered to help. The rage would be unleashed if I suggested it was important that she keep her benefit, that maybe it was unfair to our brother to let it lapse.

And this was what? (there’s the question again) out of laziness? ineptitude? insufficiently developed frontal lobe?

Well, who the fuck was I, etc.

Then there was her ‘more is better’ philosophy, which made it hard to sit and have a meal with her. Her supposed gluten allergy went out the window every single time I bought us lunch – even at a Chinese restaurant where it’s possible to eat really well without it. At the all-you-can eat buffet, she’d pile her plate with fried chicken wings and dumplings. Not vegetables. Not rice. We’d need to sit at a table because booths couldn’t accommodate her size.

In other words, just her eating disorder would’ve been hard to be around.

And the pleasantries? Even non-triggering, non-combative exchanges were full of her weird assessments, her blindness to me as a person, and insufferable hypocrisy. They were awful and hard to take.

Those assertions and opinions alone were hard to take.

How many times did I have to listen to her strenuously recommend that my husband and I go on a cruise? Why was she incapable of processing the idea that a cruise is not anything I’ve ever wanted to do and probably would never want to do, no matter the frequency of her recommendations? A trivial matter, sure, but that didn’t prevent it from getting annoying. How many times did I have to listen to her tell me to use Epsom salts in the bath?  I bathe daily. I use Epsom salts almost daily. Why could she not remember this simple fact?

She used to be well-versed in astrology (I guess), but in her last years, astrology was a crutch. Oh, it was the new moon, she’d better take it easy. Oh, it was a full moon, she’d better lay low. She was often wrong about what phase we were in, but clearly, it didn’t matter. She’d pronounce, “It’s the full moon, everyone’s going nuts.” I wanted to ask, “Based on what? You’re a shut in.” or “How much lower can you set the bar?”

We could talk about TV and food fairly well. But even there, she was hard to take. My sister had violent objections to certain spices, devoted attachments to certain others. If I heard her utter her disgust about cilantro once, I heard it 5,000 times. She dismissed certain actors because of their foreheads or noses and routinely dissed my current favorite show for no reason whatsoever, simply asserting, “Oh, I can’t watch that.”

I quickly learned not to talk politics with her, but once in a while the topic bled in. Why was I listening to the news, she’d ask sharply, didn’t I know better? And then she’d offer an opinion because apparently she felt entitled to dominate a conversation about politics even though she was spectacularly uninformed. These conversations would be peppered with gob-smacking questions like, “Who’s Mike Pence?” or “Who’s Robert Mueller?”

On the hypocrisy front, my sister offered housekeeping tips. She criticized my methods in a kind of recurring, minor torture. Why was I kneeling to wipe the floor? Didn’t I know about mops and here’s the best one to buy. Have I told you about Alice’s trick with Murphy’s oil? Okay, I’d think, if you’re so keen on mopping, tell me why your kitchen floor looks like a crime scene every time you make spaghetti?

Imagine me at her apartment, kneeling to wipe up a pool of grease — not in judgment but out of concern for her stability — and being roundly condemned for being disrespectful or compulsive or for using Windex and why wasn’t I using a mop?

“I get exhausted just looking at you,” she’d often say.

These exercises served to clarify why I felt overwhelmed and powerless. There was a reason my energies were depleted and depression hovered. They also reminded me why it was so impossible to relate to a friend how things were going with my sister. Where did I even start?

My brother got it, of course. But I couldn’t regularly vent to him out of fear that he might punish my sister by withdrawing financial support. That would’ve been catastrophic for her, and by proxy, me. In all the nine years that I shelled out a little cash for lunch and gas and put my emotional and physical health on the line, it was my brother who supplemented her meager income. Month in and month out, without complaint. It wouldn’t have worked otherwise. Recall: kids in college. And more: if I’d had a financial stake in the expensive consequences of her wastefulness, disorganization, and profligacy, I would’ve lost my freaking mind.

My husband knew her growing up. He was terrified of her. Unfortunately, he bore the brunt of my venting. Poor guy.