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Archives from 2002-2006

Erin is not her real name. I’ve changed a few things for her privacy. That said, let me bring you to Erin’s house; come with me to sit with her, this woman caught somewhere in between life and death.

We’re going to start by knocking on a door, which as always triggers an absolute cacophony of high-pitched barking from upstairs. Despite my many arrivals, the unseen dogs remain vigilant.

Erin’s son lets us in and we enter through a sort of foyer which is open to the upstairs. Everything is briefly pure audio chaos as the dogs lose their ever-loving minds and then we go through another door into Erin’s living quarters.

She has a lower-level apartment setup in this larger home, it’s the only part of the house I’ve been inside. There is a bedroom with a hospital bed, a bathroom set up for a wheelchair, a kitchenette, and a small living room.

The living room is where we will stay. Erin is in her wheelchair and situated by a couch. Her son chats for a while then heads upstairs; this is the whole reason we’re here, so he can leave for a bit.

Otherwise, he is down here taking care of his mother. All day and all night (he has a monitor by her bedside that pings him if she wakes up), and he’s done it for many years.

We don’t know Erin’s full medical story or anything like that. What we do know is that she has Alzheimer’s and she’s had a debilitating stroke. One of her legs is amputated, there must have been an infection at some point.

Erin sits in her wheelchair and she does not speak. She does not follow us with her eyes, she gazes up and to the right. There are old paintings hung on the wall she is oriented towards, her son tells me she likes looking at them.

We’re here for three hours. Upon trial and error, I have settled on a sort of routine: I watch vintage shows on the TV (Benson, Magnum P.I., Flipper, Leave it to Beaver), occasionally chatting to Erin about random things: “Gosh, I forgot all about the snarky German lady on Benson!” During commercials, I sometimes read poetry to her from my phone, or I just turn down the volume and let the room be … well, it’s never really quiet, there is a radio forever playing classical music and everything upstairs is largely audible in her area, but I let it be as quiet as possible.

I’m not going to lie, these are three long hours. Very occasionally Erin’s eyes close and her face softens into sleep, but mostly she is awake, she is here but not here. Sometimes she grinds her teeth, there is a terrible and helpless squeak of enamel as her jaw works. Sometimes her throat rattles moistly because she cannot clear it, sometimes she coughs a startling choking sort of cough and I say something dumb like, “Oh, I hope that feels better.”

Her hand clenches, she often has a rolled-up washcloth in her palm to protect herself. We will have to replace it many times when it drops. Her hand is like a fragile bird, can you feel the papery softness of her skin when we peel back her fingers? She has such a surprisingly strong grip. Her bones feel so breakable. We have to open her hand like a delicate, resistant flower.

We will gently wipe her face when there is saliva from grinding. We will carefully smooth her hair away from her eyes.

I have to tell you a secret that I am not proud of: I have really struggled with these visits. I have spent time in this room counting the minutes until I could leave. I have been deeply spooked by Erin, by this poor woman who is so damaged it has sometimes been hard for me to see that she is still a person.

This is not how anyone would want to die, and maybe that is what has been so upsetting to me. Or maybe it’s that I have no way of knowing what is happening inside of Erin: the possibility that a non-broken part of her might be trapped in a broken body is almost too much to think about and of course I think about it all the time.

I don’t know if my presence makes any difference whatsoever to Erin. I do know that it makes a difference to her son, though, and that’s what eventually helped me shift my own perspective.

My god, how he loves her. He is so tender with her, his voice and his hands. He has been caring for her in varying capacities for twenty years.

He sometimes sits and chats, and he tells me about her, what she was like before. Erin was one of two women in her medical school. She did two residencies (!), emergency medicine and psychiatry. She was described by a fellow medical student as the most forgiving person he’d ever known; she had been treated very poorly by the male students yet had always taken the high road.

She is so precious to him. She is greatly diminished but she is still his mother, she is still a person. She has medical problems and she requires care. She isn’t scary, she is dying.

Erin has lived 90+ long years and I hope that if there is awareness left in her, that she is forever visiting her favorite memories. I hope she is holding her babies, laughing with friends, treating her patients, walking in a strong and healthy body.

I also hope that you don’t mind coming here, this one time. I wanted you to know about her because she feels so disappeared, but she had a whole life. She’s still here, and we can’t know the why of it, why she has to stay in this suffering body, but she is here and no one is going to leave her to die alone.

I want to do some complaining about insomnia but in order to do so I have to do some complaining about SSRIs. So! Let me start right out with a content warning of sorts: if you don’t want to read about someone’s non-ideal SSRI outcome, because maybe you are considering medication and all the anecdotal Internet reviews (“It literally saved my life and I worship at an altar dedicated to GlaxoSmithKline!” *next comment* “This drug ruined everything I have ever loved and I am now but a husk of my former self”) have you in a goddamned tailspin, this may not be the post for you.

Anyhoo, early this year I started taking Wellbutrin, which was prescribed by a doctor who chose it for its relatively mild side effects along with other reasons I honestly can’t remember. My dosage started out small then increased a bit, and at some point, I realized I wasn’t drinking my normal amount of coffee anymore — one cup was absolute max or I’d feel like Uma Thurman with the adrenaline needle hanging out of her chest in Pulp Fiction.

I noticed a few other things, too, like how I didn’t feel regular anger but more like an incandescent full-bodied rage? But on the other hand, shit was hugely enraging during this timeframe so maybe I was just legitimately mad? But on the other other hand, my jaw was always clenched in a knot, my legs were always jiggling, and I always had this heavy anxious feeling in my chest like something somewhere was just terribly WRONG, and even though there was and is plenty of wrong to get het up about this felt very specifically like something biological had gone haywire.

Back to the doctor I went, virtually, and she was like “Oh yes, AGITATION. Yes, agitation can be quite common with this drug, because [brain chemistry stuff], here’s an extended-release version that should really help with that.”

The XL version did help with the agitation, I felt maybe more energized than usual but that edgy high-strung anxiety retreated. However, that’s about when I stopped being able to sleep. Somewhere around early July insomnia set in, and it was a particularly miserable variety that came with what I can only describe as whole-body restless legs syndrome. I’d have to get up and just walk around, over and over, throughout the night, because lying still was impossible.

Meanwhile, the doctor I had been seeing left the clinic, and I was assigned a new doctor, who was like — hand to God — “Wellbutrin? I would never have prescribed that to you, wow.”

So this new doctor tapered me off the Wellbutrin and onto Paxil, which she said was sure to help with the sleep issue plus being much better for what the Wellbutrin was supposed to help with in the first place. Instead, it made me sleepy and foggy and headachy but still wide awake at night, and also as the weeks went by one of Paxil’s most notorious side effects made itself known, which is to say an, ahem, inability to seal the deal, even if one uses a Magic Wand while having inappropriate thoughts about Oscar Isaac. You with me?

Stopping the Paxil wasn’t difficult because I hadn’t been on it that long, and I’m now on what I described to the doctor as “a break” from trying to figure out if sanctioned mood medication is right for me. At this point, I don’t see a compelling reason to experiment again any time soon. I’m seeing a seriously amazing new therapist (she’s so good and of course she doesn’t take insurance, arggh), I’m doing all the self-care things, I feel pretty decent and stable these days. Life on life’s terms for nearly 12 months now, check.

My sleep still sucks a whole lot, though. That crazy restless feeling subsided but no matter how tired I feel when I get in bed I am reliably getting on board that insomnia train, destination 2-ish A.M. Is it some sort of left-behind effect from the meds? Is it just the tax of modern life? ♬ Maybe it’s menopause? 🎶 Who knows, but I sure have plenty of time to ponder the possibilities each night.

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