Eliminating reactivity

During 2017-18, I worked really hard with a guide from Liberation Unleashed to eliminate reactivity. We called it "breaking the fetters of desire and ill will". After 18 months working together, I had lost my juice for it, and was relieved to stop working with Lake. I hypothesized that I hadn't fully done the prerequisite work of seeing through the illusion of self, and set to work on that, and I didn't make any clear headway on that, either, though I keep coming back and back to it.

A couple weeks ago I went back to Jan Frazier's book, The Freedom of Being: At Ease With What Is. She is deep and detailed about what to do to wake up. She doesn't talk about the fetters, but she does say that we have choice in every moment and most of the time we don't see it. I think the delusions of the fetters are that we don't have choice. With regard to reactivity, she talks about noticing the gap between stimulus and reaction, and noticing that there is choice to not react. This is very similar to how Lake and the other LU guides approach eliminating reactivity, including the use of the term "the gap". I thought about all the times I noticed that there was a gap, yet continued to react. I wondered if perhaps the main thing in my way was simply disbelief in the possibility of success. And/or, a belief that reactivity is what's going to bring me happiness.

A couple days ago I resolved to work hard on this yet again. I resolved to, as much as possible, never yield to reactivity. If I missed the gap, I at least was going to let go of my reaction ASAP. But I hoped I'd frequently catch the gap and choose to NOT react.

And ... I found myself successful on numerous occasions! The sense of peace, rest ... freedom! experienced during those moments was delicious and further convinced me that not reacting is MUCH more rewarding than reacting.

This morning, a twist. This morning I chose to work with my morning dread by giving voice to the inner child, by fully feeling the sensations and allowing the words that came with them. I ended up doing this for a couple of hours, then took a nap. Afterward, when I was interacting with Z, she said something that is typically mildly triggering for me (maybe asked me what I was doing) and I not only didn't catch the gap, I went into reactivity without my typical habitual tensing up (because, I suppose, I'd just practiced allowing emotion without tensing for two hours) and felt it strongly. Immediately after she said that, she started eating berries, triggering my misophonia, and I was utterly miserable. I didn't display my misery but I left the room, walked up the attic stairs, and slammed the door a little bit behind me (slamming a door is a great cure for misophonia misery).

Afterward I had pessimistic thoughts about eliminating reactivity. Then I hypothesized that the inner child work I'd done is training in the opposite direction. It's actually practicing being reactive. It has its usefulness, but perhaps should not be done concurrently.

I'm excited to continue my training in eliminating reactivity. And postponing further inner child work.

Loving staying home during the pandemic

Here's something I wrote on April 14, after staying at home for about a month:

Thoughts about staying at home.

Stay Home, Stay Safe is the ultimate vacation for me. I could never
have imagined life would serve me something so delicious: week upon week
of permission to stay home and do nothing. Week after week of
having nothing in my calendar but a weekly Skype client visit and a monthly
board meeting. Of spending every day at home with Eric and Zarina, sleeping in
as much as we want, enjoying three meals a day together, watching TV in the
evenings.  Of having no social engagements and, best of all, no invitations.
Of quiet, with weekday traffic lighter than normal Sunday traffic, and almost
no air traffic.

Each of the previous eleven springs I've lived in this house, I've
dreamed of having an immaculately weeded garden. Now I have one.

This is likely a once-in-a-lifetime opportunity, and every day I try to
appreciate and savor it.

Something that helps me tolerate and even enjoy being idle is my years of
meditation practice and related inner work, which has taught me not to believe
my thoughts. By closely observing my own mind, it has become more and more
clear to me that thoughts arise of their own accord and often contain messages
that bear little truth yet give rise to a lot of stress. Messages like, "you
should be doing something", "it is bad to be on facebook for so long", "you
are a bad person and therefore everything you do is wrong", and "it's not safe
to experience pleasure". I am not by any means free of being influenced by
such thoughts, but their grip is much looser than it used to be.

I love being idle so much, I'm daydreaming about whether I could extend this
lifestyle indefinitely. To do so would require two things: canceling all of my
regular activities, and declining invitations to socialize. Both sound
difficult, and for the same reason: I'm afraid of the judgments of others.

I want to explain what is so delicious about having an empty calendar. Very
few of the things on my calendar are things I look forward to. Most of them
involve social contact I find difficult and stressful. Some of them are things
I do in order to serve the community. Some of them are things I do in order to
earn money, though arguably I've already saved enough money to not have to
earn any money at all. During normal times, each night when I go to bed, I
view the coming day as a series of hurdles to get past. I often don't even
know what those hurdles are until I get out of bed in the morning and check my
calendar. Then when I do get up and check the calendar, I already can't wait
for all the hurdles to be behind me so I can relax at home. Many of the
activities I engage in, I look forward to their being over almost as soon as I
begin them.

On Tuesdays I meditate with Rita. I like doing that, except I don't like that
it's on the calendar and I have to be there at a certain time, sometimes
earlier than I'd like. I enjoy chatting with Rita afterward and I enjoy that
this means I see her regularly and don't need to schedule other ways of seeing
her.

Later Tuesday morning I lead my walking group in Magnuson Park. I find a few
things stressful about this. First, it's stressful to gather everyone together
and figure out what time to actually leave on the walk, because some people
are regularly late. Second, it's stressful to choose a route that's suitable
for the ability levels of all of the people participating. The routes all
involve crossing streets and parking lots and checking for traffic, and they
can't just be followed mindlessly, especially when there are participants with
mobility limitations. Third, sometimes the conversation can be stressful or
boring, and sometimes someone brings their dog and it's hard to incorporate
the dog into the walk. Oh, and another stressful part is preparing the snacks
ahead of time and figuring out at what point during our walk that I will
distribute the snacks, and keeping track of the time during the snack break.

Writing all this out, I see various ways I could make things less stressful
for myself. I could map out a small set of walks that I repeat, and select one
each time. Each walk could have a pre-determined snack stop. I could eliminate
snacks entirely if I want. I could delegate time-keeping for the snack break,
or have it always be N minutes and use my phone to keep track of the time.

Also, writing this out, I am feeling affection for the people in my group, and
missing them, for the first time.

On Mondays, Wednesdays, and Fridays, I go to the gym. I don't like having to
get up early to go to the gym, and I don't like coordinating with Eric,
Zarina, and Charu regarding leaving time and who will drive and how long we'll
be at the gym. I don't mind actually working out, which I feel really grateful
about. But I often find it stressful to chat with Charu on the exercise
equipment, partly because it's difficult to hear what she has to say, partly
because it's difficult to talk and simultaneously get my complex circuit
workout done, and partly because sometimes the topics of conversation are
stressful (Charu is a very politically engaged socialist and I fear being
judged as overly pro-establishment and insufficiently engaged in activism).

On Wednesday evenings I meditate with the Lotus Sisters a few blocks away. I
like doing that, except I don't like leaving the house to do it, even though
it's so close. I see it on my calendar and it feels like a big heavy thing
that I have to do and that will interrupt my lovely relaxing time at home,
especially when more often than not the weather outside is uncomfortable.
And walking there with Zarina also is typically stressful and unpleasant.

Wednesday and Thursday afternoons I see my client Kathy for 3 hours in
Ballard. I find the time with her somewhat tedious and I am typically looking
forward to it ending. We go for long walks together. It's not clear how much
she's taking in. She doesn't converse, she doesn't find particular sights
engaging (for example pretty flowers, animals, views don't seem to impact
her). Before and after, I talk with her husband, and although I've adapted to
him somewhat, I find that stressful as well. I fear being judged as inadequate
or too expensive. And he can be a chatterbox. And he tends to be negative
(though to be fair, he's in a really tough situation). Each time I see Kathy I
earn $120, but I don't have a way of viewing that amount that makes it seem
worthwhile. Over the course of a year, my visits with her would earn me about
$10,000, about 1/5 of the total amount of money I need to support myself.
So doing this work means that I will burn through my retirement savings a
little more slowly, but that benefit doesn't feel compelling and my perception
is that I'm basically earning no money at all. I do like the exercise I get,
and it's more pleasant in seasons other than winter.

Monthly I have the meetings of the Ravenna-Eckstein Advisory Council. There
are only nine business meetings each year. January is a dinner meeting, and we
have July/August off. I find myself dreading each meeting starting about 10
days in advance. That's 90 days of dread throughout the year :-( Though in
general I typically find meetings tedious, these meetings are not tedious
because I am the one leading them. But they are somewhat stressful. It's hard
for me to know how to move them along without being bossy. I do prefer
presiding over the meetings vs. either taking notes (as Secretary) or just
attending as a member, so I'm glad I'm presiding, but being president has
added a lot more stress between meetings. I don't feel really motivated to
accomplish anything on this council. I'm not passionate about it. And the
other members ... well, let's just say that the council is not highly
effective. People drag their feet about doing their tasks. Rita brings by far
more juice than anybody, but this has its price because she's also prickly and
disruptive.

For all of the above, the anticipation is a big part of the
unpleasantness.

Then, there are the activities that aren't regularly scheduled.

Vacations. I don't like them! The one vacation I really liked was the cruise
with Eric, Zarina, Dad, Nick, and Deena. It was easy to book, easy to get to,
and easy to do. It required little preparation.

Other vacations are so stressful, so much trouble! Planning. Coordinating with
Eric and/or Zarina. Enduring discomforts. And sometimes needing to socialize
as part of the vacation. Weddings are the worst. So many people to talk to. So
long. So loud. Orienteering events are also hard. Everybody wants to say hello
to me. I love so many of the individuals, but the social scene feels hard and
unsatisfying. When I first met Eric, we traveled to a lot of orienteering
meets, and I saw so many people regularly. But now, it's not regular. Even
going to Bay Area meets feels stressful, and they used to be my home club.

I do really love just traveling to visit Dad. When I do, I have a very few
activities each week, and those feel welcome and enjoyable. When I am with
Dad, I don't feel dominated by my calendar. Visiting Dad has a lot of the
flavor of being home during this stay-at-home order. Wide expanses of
unscheduled time. Nothing to dread.

I do love the memories I have from some other vacations. The trips to Standing
Rock. Mount Rushmore. Laramie in 2013. Some of the memories from our two Italy
trips in 2014. Connecting with Zak, Jenny, and Raheem in Hawaii.

I like working at See's, and look forward to it! Even though the pay is
pitiful. The only thing I dislike about working at See's in Seattle is that I
don't feel at ease when I'm on the same shift as Monique.  Sometimes the
unease goes away over the course of a shift, sometimes it doesn't. I can have
a hard time feeling accepted by women, and she has a personality that triggers
my insecurity. But this also makes me feel appreciative of the great ease I do
feel with every single other person on the team. It's just so fun to work with
them! The team in Burlingame was less fun. I didn't like the way the shop was
run, and that wore on me. I remember at the end of the season, I was glad it
was over, and I thought to myself that I mightn't choose to do it again.
Perhaps I can ask for shorter shifts next time? Wish I'd made more detailed
note of what I thought I'd prefer at the time.

----

And here's something I wrote ten days later:

I am finding so much rest and relaxation in staying at home and having a clear calendar. I almost never need to consult my calendar these days and I love it. In normal times, I feel that I live my life by the calendar. Often I go to bed at night not knowing what's on my calendar for the next day. Most of the activities I normally do, are done out of a sense of obligation: to serve the community,to stay informed, to participate in the political process, to stand up for social justice, to attend celebrations and other social gatherings, to keep up with friends.  I find social gatherings very draining after the first 20 minutes and use food to soothe the anxiety. Even 1:1 get-togethers are often challenging for me. My ideal, when we no longer need to isolate, would be to have 4 days/week with a completely clear calendar, and one week/month also with a completely clear calendar. And to have no more than 4 scheduled things each week, including going to the gym.

I view my calendar as a series of hurdles that I must get through. Except for a very few activities, I anticipate each such hurdle with a certain amount of dread. Part of the dread is the need to do something at a certain time. I find it unpleasant to go through the process of rescheduling things, especially with more than one person, so I almost always keep my commitments even if, as they approach, the timing is inconvenient. I've told friends that I prefer for them to drop by spontaneously rather than plan something, because then I can see them without the anticipatory dread. However, it is still rare for anybody to drop by spontaneously.

Social gatherings are always much easier for me if I have a mindless task to do almost continuously. This could be hand sewing, working on a jigsaw puzzle, or weeding. I have a quilting project that I used to use for this purpose, but it has gotten to a stage that is a little more challenging, and I have stopped bringing it with me to gatherings. I'd like to prioritize either getting this project back on track, or starting a new hand sewing project.

Some people like to socialize by playing games. I don't like games that involve waiting for my turn, and I don't like to learn the rules for games. But I think I could benefit from getting more into games, because this would also likely work to ease my social anxiety.

The crushing force of sex-based societal norms

For the past several weeks I've immersed myself in reading and thinking about sex and gender identity. The West is in the midst of a massive societal shift with regard to these concepts. It affects my daily life, so I am trying to find my place in this realm. Will I state "my" third person pronouns if asked? Will I use the third person pronouns that others request? To what extent will I use gender neutral pronouns for all people, as I think we all would ideally do? How will I respond when in a women's locker room and somebody male-presenting or male-bodied enters? I believe the concept of gender identity is harmful, especially when it replaces (rather than augments) the biological concept of sex, and also especially when it is taught to children. This viewpoint has come to be called "gender critical", although I hesitate to take on that label because so many who embrace it oversimplify the situation.

I have been reading memoirs of people with nonbinary gender identity, and also accounts of parents who have sought help in children's gender clinics. And these have illustrated for me the power of female and male norms in our society. Having had 60 years to adapt to these norms, I navigate them with reasonable ease, so it is easy to forget or ignore how powerful they are and the sacrifices that I and others have made to them. It is easy to dismiss those who have not been able to adapt, or who choose not to.

Norms for males are the more stringent. Little boys absolutely must conform to them, else face punishment from their peers (not to mention powerful and hurtful pushback from adults). Pressure from teachers, coaches, schoolmates, neighbors, and relatives forces boys to be rough and tumble, at least to some extent. It discourages them from expressing passive or nurturing tendencies. It ridicules interest in any kind of personal adornment, or fondness for female role models or fictional characters. Societal pressure demands that boys interact mostly with one another, and that they do so in the manner that is typical for males. I do not believe it an exaggeration to say that boys are brutalized into behaving like boys.

As adults, males, especially heterosexual males, must continue to conform in order to succeed professionally and socially. There is more leeway to deviate than in childhood, but not much more.

I read in some accounts from adult males (I use the word male to refer to the person's sex, not their gender identity) of the pain they experience at not having an avenue to express themselves socially the way females are allowed to do: talking intimately, expressing emotion, showing interest in the nuances of interpersonal relationships, revealing deeper thoughts and feelings. I am reminded that most heterosexual males are able to do this only with their girlfriends or spouses, if then. Males who try to express themselves this way with other females will be suspected of having romantic intent; if with other heterosexual males, they will be found off-putting at best.

Many gender critical writings argue, "people should just express themselves however they like without needing to take on gender identities." This is a cavalier ignoring of the obvious truth that there are massive obstacles in the way of people "just expressing themselves as they like".

One parent wrote that when their boy started kindergarten, the teacher forbade him from putting on princess outfits when playing in the costume corner. "Boys may not wear princess outfits," the teacher said. This simple pronouncement was the start of this child's path toward identification as a girl. It is easy to criticize this parent's choices. "Can't it suffice for this boy to enjoy wearing princess costumes at home?" "The parents should have made the school change its policy!" But reading the detailed accounts of these parents' journeys made it clear to me that this is incredibly complex territory to navigate, and largely because of the strength of society's demands. I wish I had the time and energy to recount some of these journeys. They are compelling, and I urge you to read about them yourselves in Trans Kids: Being Gendered in the Twenty-First Century.

I don't have space or time to comment on norms for females, though there is certainly just as much to say about them.

If I had a magic wand, I would redirect all the energy of those in the trans rights movement, and all the energy of their critics, toward a vigorous common fight against male and female societal norms.

Satisfying that spot on my abdomen

I have been obsessively imbibing material on the subject of sex and gender as they relate to the current transgender rights movement. Also reading memoirs by trans- and nonbinary-identifying people. I could write forever on this topic. But not presently.

Both E and Z are away this weekend. I enjoyed waking up alone and spent hours in bed before arising.

Lately I have been partially waking up very early in the morning (my guess is around 5:00 a.m. but I never wake up enough to look at a clock) and coming to awareness of the sudden activation of the thinking mind on topics of personal doom and gloom. I've written about this many a time and have called it the "morning dread". But this waking up early is new-ish (maybe last few months), and often now I will do deep inner work until fully awakening a couple hours later. I will dive beneath the superficial worries ("Will I finish the railing on the rental driveway before the deadline?" "How will I deal with my anger at R and will it become a drawn out source of pain?") and listen to the voice underneath it all that says, "I'm afraid", "I am alone", "I don't know what to do", "I can't stay in this state, it is not the place to be". This morning and yesterday morning there was an image of a bedroom door ajar (not my bedroom today but a different bedroom) with a light on outside, and a sense that Mom was out there and not responding to my wish that she be with me. I can feel the deep longing, the sense that something must be gravely wrong with me if she is not with me, the absolute desperation and despondency.

For those who have not done this kind of work, this probably sounds very foreign and possibly made up. I know I would have judged it that way in my youth. What does it mean to "dive beneath the superficial worries" and "listen to the voice underneath it all"? I just did a brief experiment to try to find a way to explain. It involves shifting attention from the superficial worries to bodily sensations. I go to the sensations that seem associated with the worries, the ones that, when I feel them, are interpreted as "something is amiss and needs to be fixed". And then I inquire as to what these sensations are saying. This is not at all an intellectual exercise. It might be more accurate to say that I allow the sensations to speak.

Sometimes I am reading instructions written by others about how to do some particular kind of mental or even physical activity (such as in the paragraph just above), and I try really hard to follow the instructions, and I cannot get the results I seek, and I feel really frustrated. Often I blame myself for not understanding. But I am guessing that most of the time it's that language is an imperfect communicator, and also that I myself am not prepared to receive the instructions because I am lacking some prerequisite experience.

For three hours after actually awakening, after getting up to use the bathroom, I stayed in bed and spent 90% of my time on my phone (mostly scrolling facebook) and 10% of my time vaguely continuing this inner work. I'm not sure whether the inner work actually is useful when I do it "vaguely". This whole time I was also massaging a spot on my abdomen midway between my right iliac crest and my navel. This is a spot that I've been aware of for 40 years and I typically refer to it as "that spot on my abomen". It is a spot that craves massage. I wonder whether there is some tension stored there from early trauma. While doing everyday activities I am usually unaware of it except in recent years it sometimes is "activated" for hours and is distracting and uncomfortable. I said that the spot craves massage but usually actual massage is unsatisfying. But today, it ended up being more satisfying than it ever has been in my memory! At first today self massage was unsatisfying as usual. I tried light massage and very deep massage. Later, the massage evolved into a kneading of a broad area, basically the entire right abdomen, and I began to feel some satisfaction. After a while I found my hands massaging my breasts, something I am almost never drawn to doing. Then, back to kneading of the abdomen. Now, sitting at my computer 2 hours after arising, I feel extraordinarily at home in my body, and also unusually good about myself. Self-critical thoughts are much diminished in intensity.

I first became aware of this spot on my abdomen while being physically intimate with my first boyfriend, in college. Whenever he'd brush his hand lightly over the spot, I would flinch uncomfortably. I had no idea why this spot was sensitive like this and I would always ask people not to touch me lightly there. It wasn't until decades later that this spot further awakened and I experienced deep sensations there and found that it wanted massage. This "awakening" of the spot seemed related to my general overall awakening having to do with meditation, psychotherapy, and inner work.

I have started and aborted many writings on the topic of sex and gender as they relate to the current transgender movement. These writings have explored multiple angles. Each one I have longed to put out into the world. I have not put out any of them. The topic is complex and fraught. And my views about it are changing rapidly. My views are not oscillating; rather, they are evolving. That tells me that my obsession is bearing fruit. I am eager to continue.

It's so hard to make life comfortable for people with dementia

I've just embarked on a new career in dementia care, as a one-on-one companion. Looking through old writings, I found this from 2015, about how difficult I was finding it to arrange care for my mom that made her comfortable:

From 11 December 2013 interview with Sir Terry Pratchett, who had early-onset Alzheimer’s and who just died: “Care, mostly for people with dementia, is not as caring as it may seem, by any means. I think that if someone thought they would have really good care, possibly end of life care, care, at least, with dementia, it would lose at least a considerable amount of the fear.”

My mother has dementia. She’s had symptoms for 8 years. The world our family has inhabited since then, the world of Alzheimer’s disease, has been so subtly yet excruciatingly crazy that it’s hard to know how to begin to describe it. And I don’t like to describe it because I don’t want to be a whiner and a complainer. Our family is incredibly privileged, my life is very blessed in almost every way imaginable, everyone involved is doing the best they can, and billions of people on this earth have it worse than my mom. Yet, I think I have an important story to tell. So I am sipping a $9 gin and tonic in the airport restaurant, hoping that the gin will lubricate my story telling.

I live in Seattle, 800 miles north of my parents. I fly down monthly to spend a long weekend. I am writing at the end of one such weekend.

Today at 3:30 I went to my mom’s dementia care home for a visit. She lives at an Aegis facility. This is a top of the line facility. Not the tip top, but close to the top. It is the best facility within a 15 minute drive from my Dad’s house in the San Francisco Bay Area. If any metropolitan area is expected to have top of the line stuff, it’s the San Francisco Bay Area. Aegis is a west coast chain based in Seattle, and Aegis of San Francisco houses about 85 assisted living residents, including about 18 in the dementia care unit. That unit is called Life’s Neighborhood.

Life’s Neighborhood occupies most of the ground floor. It is separated from the rest of the facility by alarmed doors – anyone can freely enter, but to exit, you need to punch in a 4-digit code, otherwise the alarm will sound. The insides of the doors are painted to look like bookshelves.

I entered Life’s Neighborhood and went directly to the large community room. This is where most of the residents spend most of their time. I’m glad about this.

I went to the community room and, not surprisingly, found Mom sitting with other residents uttering words of distress. Specifically, she was seated with Bobbie, Bobbie’s daughter Donna, and her son-in-law Ron. Donna and Ron, bless their hearts, are kind to my Mom and try to ease her distress, but often there is little they can do. Bobbie has both dementia and bipolar disorder. She is fairly lucid and very talkative, and often she gets on Mom’s nerves.

I approached Mom from behind and put my hand on her shoulder. “Look, your daughter is here,” said Donna. Mom looked at me. “Terry! You’re here! What’s happening to me? Please help me.”

Since Mom moved to Aegis a year ago, she’s experienced periods of distress almost every single day. Sometimes these periods last for hours. Often, if I arrive during such a period, she calms immediately. Today was not one of those times.

For the next three hours I stayed with Mom, trying various strategies to soothe her. I held her hand, sang her familiar songs, and said familiar prayers with her. My sense is that, when she is distressed, inhabiting her mind is nightmarish. In this sense, dementia is similar to other mental illnesses.

Dementia (Alzheimer’s being the most prevalent form) is commonly thought of as a disease that steals one’s short term memory. This is just the tip of the iceberg. Short term memory loss is simply the first obvious symptom. Dementia is a gradual loss of brain function. After the short term memories go, the long term memories go, along with awareness of one’s own condition (after the initial stages of dementia, people lose the understanding that they have dementia) and the abilities to reason and converse. Then, abilities such as bladder and bowel control, the ability to walk, and the ability to eat and drink go away. Finally, the ability to breathe goes away, and the person dies.

It is not surprising that the person with dementia experiences distress along the way. Coping mechanisms that they have relied upon over a lifetime no longer work. Situations no longer appear as they once did.

For unknown reasons, distress often intensifies at the end of the day. This is called sundowning, and Mom has experienced sundowning for years. Today she sundowned hard.

I stayed with my Mom as she repeatedly and plaintively said things like, “I’m afraid. Help me. What should I do now? What was that noise? Who is that man? Why are there so many people here?” I patiently replied to all her questions, but usually, as soon as a reassurance was offered, a new concern arose. It appeared to me that she was simply ill at ease, and that no reassurance was going to work. Mom has been a fearful person her whole life. She was good at hiding it, but those of us close to her could see it.

Mom’s short term memory is now extremely short. Generally, she can remember something for about 15 seconds. Some impressions last longer. For example, after she has had a visit from her husband or children, she will ask staff, “Where is my husband?” or “Where is my daughter?” with greater frequency than usual. She won’t consciously remember that she’d had a visit, but some part of her being knows she has.

One of the 17 or more crazy things that happened this past weekend was that Genalynn, the assistant director of Life’s Neighborhood, said to me, “I really can’t say this to families, but it’s almost better if they don’t visit very often. Better if they visit just once a week. Because after they leave, the resident is usually agitated. They ask for their family members and sometimes they try to exit Life’s Neighborhood.”

Why is this crazy? Because visits from family, for some residents, are the most joyful times of their day to day lives. There is little joy in Life’s Neighborhood. There are indeed joyful moments during activities, especially during singing, dancing, ball tossing, or art projects. But this joy is experienced by only a fraction of the residents—those that have the capacity to participate in such activities. Many residents spend nearly the entire day sitting in a chair, doing nothing, and interacting with nobody.

During my last visit I asked Ralph, the LN director, about a particular resident: “Look at Mr. N over there, sitting alone at that table. It seems that he doesn’t get any interaction with anybody all day, except during personal care. I can’t help but wish,” I said as diplomatically as I could, “that every resident, even Mr. N, could have at least 30 minutes or an hour of 1:1 time with your staff.” Ralph said, “We’ve tried interacting with Mr. N. He says he doesn’t want any company.”

“I am not convinced that he doesn’t want company,” I said. “Perhaps he just needs to be approached more gently.”

The staff at Aegis is nearly 100% Philipino immigrants. It’s not politically correct to generalize about people of particular ethnic origins, but that’s a pity, because generalizations are often both accurate and useful. What I greatly value about the Philipina and Pilipino caregivers I have observed is a patient, accepting, generous, and humorous nature. However, I don’t see a lot of sensitivity and finesse. Perhaps finesse is in short supply in the human race. But most of the care staff of Aegis, with the exception of the medication technician Lulu and perhaps the head nurse Josephine, approach the residents somewhat abruptly. “Mr. N, would you like to play with the bouncing ball now? Come over here. We would really like you to join us.”

I have little training in dementia care, but I know from working with my own mother that Mr. N probably needs someone to sit with him quietly for 15 minutes and gently engage him before bringing up the idea of tossing around a bouncing ball.

Even then, Mr. N likely would not enjoy the ball activity. That doesn’t mean he doesn’t have the capacity for enjoyment. There are more subdued activities that have been found to be engaging for people with dementia, especially those in the later stages. But it does not appear that the staff at Aegis provides that kind of engagement. One must hire additional help to get this kind of thing. Our family hires an Activity Specialist from Sage Eldercare, a geriatric care management consulting firm, to provide this to Mom. Twice a week, Miyoko comes and shares scent and tactile experiences with Mom. She will also gently, and with finesse, engage Mom in creative activities such as coloring with colored pencils. For this, we pay Sage $65/hr, including the time Miyoko spends traveling to/from Aegis and writing up a report of her session. All told this is about $200/session. We have the means to pay for this. I imagine we are among the top 1% of families in this regard. We are incredibly fortunate because Mom has nearly $1 million of her very own, inherited from her parents and her sister who died young. We can spend all of this on Mom’s care. I wish Mr. N could have Miyoko visit him twice a week. I wish that he and Mom and all Aegis residents could have Miyoko twice a day, all days of the week.

Talking to Aegis management about this makes me feel like I’m in a bizarro world. These people would not have the jobs they have if they did not have a passion for eldercare. But either they do not have great sensitivity for the needs of people with dementia, or working in the industry has created a numbness. Because when I ask them, “Don’t you wish you had more staff so that your residents could have more 1:1 attention?” their answer is not an immediate yes. How can it not be?

The hands-on staff, the ones who do dressing and bathing and toileting, and serving of meals, and cleaning up poop that has gotten on the floor, the ones who separate residents who are getting on each other’s nerves and wake people for breakfast and entreaty them to throw the bouncing ball and respond when they set off the alarm by trying to exit—at Aegis,l these people have the job title Care Manager. The reason behind this apparently inflated job title is, according to Ralph, because these people manage the care of the residents. The care managers have a tough and often distasteful job, and their pay is very low. My guess is that it’s about $13.50/hour plus benefits.

I never see Care Managers engaging with residents unless it is for the purpose of keeping them groomed, fed, toileted, medicated, uninjured, and calm. The sense I get in Life’s Neighborhood is that the primary goals are order and calm. When that is achieved, Care Managers congregate in the kitchen area. It’s not like they have a ton of down time, and I fully support them getting a break when they can. But I never observe them just chilling with the residents. They don’t seem bonded to them; they don’t seem to experience deep affection for them.

I wish that the Care Managers had, as part of their job, being friends with the residents. Maybe people with dementia aren’t everyone’s favorite for social interaction. But wouldn’t it be more fun to spend 6 hours a day changing diapers and 2 hours a day hanging out with people, than to spend a full 8 hours a day changing diapers? Sure, Aegis would have to hire more staff, but at that rate of pay, and the 1:6 staff:resident ratio, I figure this would end up costing each resident about $20/day or $600/month. Given that it already costs $5000 to $10,000/month to live there, the added $600 is only about a 10% increase. And maybe it would end up costing less, because maybe if the Care Managers were more bonded to the residents, the rest of their job might become more fun and thus easier. OK, I don’t really know anything about this, but it seems to kind of make sense, right?

Instead, if the family of any resident wants more personal attention for their loved one, they have to hire from outside at a rate of $30/hour minimum. Most such help requires a 4 hour shift minimum, so a family pays a minimum of $120/session for such help. It is possible to get help for half that rate by hiring under the table and paying cash; Aegis discourages this but allowed us an exemption. Still, we must pay a minimum of $60/day for Mom to have 1:1 attention.

The obvious person to give Mom 1:1 attention would seem to be her husband. Dad is healthy, vigorous even, and lives just a 10 minute drive away. Mom is constantly asking for him. But Dad visits Mom only twice a week, when Mom’s private caregiver Liza is there. Why is this? In broad terms, it is because Mom is no longer the woman Dad married. He doesn’t know how to interact with her. He still tries to interact with her as though she did not have dementia. “Joe, I’m scared. Help me.” “Emily, why are you afraid? There is nothing to be afraid of.” He likes to visit when Liza is there because Liza provides a buffer. Lately I have seen Dad rub Mom’s hands and shoulders. It is a joy to see this, because it is something that Mom very much enjoys (when she is not already distressed) and Dad was initially reluctant to do it. I would like Dad to be there more to rub Mom; perhaps I will try to find a way to make this happen.

When Mom lived at home, she would become afraid of her husband nearly every evening. As much as she asks for him now, when she was living at home she would call me several times a week to tell me that she really was afraid for her life and she didn’t want to live with Dad anymore. This no doubt got under Dad’s skin.

Health care is fragmented for everyone in the U.S. For Mom, it is doubly so. Mom has three doctors: her primary care physician, the one she’s had for decades; her oncologist (she has breast cancer), and a geriatrician.

Each of them has prescribed multiple medications. The geriatrician’s primary responsibility is to manage Mom’s psychoactive meds, the ones that are supposed to ease her agitation. But when the geriatrician visits, she only sees Mom for a brief time. Then, the meds she prescribes are not ingested with any precise timing. Mom resists taking medication. The staff says that she will resist even if it is offered in jam or ice cream. Sometimes she gets her meds at 4:30 and sometimes at 8:30 or even in the middle of the night. I have no idea what her mood cycles would be like if her meds could be delivered more regularly.

When Mom first moved into Aegis, her 1:1 caregiver Aleli was telling me the horror of the place over the phone. “This place is no good for your Mom,” she said. “Everyone is worse off than her. One man keeps yelling, ‘Help! Help!’ all day.” I could hear him over the phone.

How could a resident be calling for help without someone coming to comfort him right away?

Later, when I was able to visit Aegis, a staff person told me that Mr. Gerbaldi used to be a fire fighter. He says “Help me! Help me!” because that is what he used to hear from people at the site of a fire, and he says it as sort of a nervous tick. He doesn’t really want any help and if you ask him, he’ll say he’s fine. That made me feel more at ease about the situation.

Over the months I began to interact with Mr. Geribaldi. If I was walking down the hall and passed him as he was calling for help, I would pause, kneel beside him, and say hello. He would stop calling for help and we would chat for a while. Every time I did that, he said, “I really appreciate you taking the time to stop and say hello. Most people don’t stop.”

I saw sometimes that Ralph would stop briefly with Mr. G and say, “What’s the matter?” Mr. G would say, “The same thing.” Ralph would say, “Remember what I told you--you should pray.” “It doesn’t help.” “Pray harder,” Ralph said, as he proceeded down the hall to wherever he was needed.

That gave me the idea to ask Mr. G if he’d like to pray together. We began saying the Lord’s Prayer several times at a go. Mr. G would smile at me, and it would melt my heart. I knew that he appreciated my brief visits and worried a little that it would make the alone time more painful for him.

This past weekend I spent even more time with Mr. G. Specifically, on Saturday afternoon Dad and Liza took Mom into the Aegis parlor (outside Life’s Neighborhood) for so-called Happy Hour, a time with live music and refreshments. I don’t care for Happy Hour so I decided to spend that time in Life’s Neighborhood visiting with the other residents. Yesterday I spent that time with Mr. G, at least 30 minutes. We had quite a conversation. I learned where his fire station was located, that he likes to dance foxtrot, that he has no children and his siblings have passed away. He asked me about my family, where I live, and what I do for a living. He was far less impaired than my mother.

Finally, this exchange:

Mr. Geribaldi: “I wish we could have met under better circumstances. I’m not well. I’m not right in my mind. I’m miserable. I keep thinking about the same thing. The same thought is stuck in my mind.”

“Do you mind if I ask – what is that thought?”

<pause>

“I keep thinking about a certain person.”

“And that makes you miserable.”

“Yes. I feel miserable, and then I feel like crying out. I feel like crying out, ‘Help me. Help me.’”

Compassion arose for me. Mr. G no longer seemed like a crazed person nonsensically crying out “Help me” when nothing was amiss. I had a visceral sense of what it might be like to be him, to be miserable, to cry out “Help me” if for no other reason than to interrupt the painful thought cycles.

I don’t like the way personal care is offered to my mother. I’ve witnessed her evening care a few times and it is humiliating to her. When she lived in her home, she was able to get herself ready for bed. She would take off her top and her bra, slip her flannel Lanz nightgown over her head, then remove her trousers and socks and contentedly slide into bed. During her first few months at Aegis, when I visited, I assisted her personally in her evening care, and it was much the same.

One evening, I asked to be present while a Care Manager performed her evening care. The Care Manager led Mom into the bathroom, instructed her to sit on the toilet, and quickly removed all of her clothes, including her panties. Mom looked at me with a distressed expression, as though to say, “Why are you letting this happen to me?” The Care Manager sprayed a wipe with a solution and cleaned Mom’s genitals, then quickly gave Mom a sponge bath. Then she put Mom’s night clothes on.

I was speechless. Did it need to be this way? I could have asked this, but I didn’t. I didn’t want to tell this woman how to do her job. I was shocked that this is how she’d been instructed to act. Later I observed other care managers and they did the same. Bedtime can be a time of gentleness, reassurance, and bonding, but this is not what I’ve observed.

Being a woman

Lately I have been reading current writings on the topic of sex & gender. In our society this has been a topic of great tension and upheaval over the past decade, and of late I have been nearly obsessed with the topic, wanting to figure out my place within it and how to relate to others about it. In the midst of my reading I felt moved to reflect on my sense of myself as a woman. Below are some raw reflections. I understand that the concepts of sex and gender, of female/girl/woman and male/boy/man, are currently in flux and that in my writing I am not precise about what I mean by these terms. Also, I am certain it is cissexual-centric.

What I have liked about being female

Not having had to worry about being conscripted into military service

Physical flexibility
Loving babies and small children (this love correlates with being female)

Greater access to babies and children; not being treated with suspicion.

Not being seen as a physical threat by others.

For the most part, I have been comfortable with the femaleness of my body. It has not bothered me on any visceral level. It has only bothered me to the extent that it has created secondary problems for me such as being weak, the target of sexual attention, and menstruating. I do not experience aversion regarding my breasts or vulva.

Being less subject to childhood bullying.

The ability to multitask (didn't realize this was sex-linked until recently).

Wearing dresses/skirts sometimes

Feeling free to explore same-sex romance without fear of the violence that gay men are subject to.

The intimacy and relaxation I can feel in the company of other women ... to some extent. But not sure what it would be like to be male & in the company of men, possibly similarly satisfying. And so much of this depends on personality, not just sex/gender.

Not having to live up to high expectations regarding being a provider, being a sexual performer, or being physically capable. But, again, were I actually male, perhaps these expectations would feel like an invigorating challenge.

Fashion, to an extent. But, again, were I actually male, maybe I wouldn't care about fashion.

What I have disliked about being female

Not relating to other little girls, seeing them as silly and stupid, but also not feeling drawn to rough and tumble play with boys

Bleeding from between my legs a lot of of the time for 40 years

Being physically weak and therefore less capable. Needing to use tools designed for the typical man, making me even less effectual.

Feeling vulnerable in response to the attentions of straight boys/men, whether that be catcalls or respectful expressions of romantic interest or anything in between.

Feeling vulnerable and afraid when walking alone at night in the city, or hiking alone on a trail, or the like.

Likely, less intellectual capacity due to my sex

Likely having had less success in my career due to the male domination of my field and male domination in general. Being talked down to by men in my career. Having my thinking less respected by my dad than my brother's thinking.

My difficulties with sexual relating (I believe these are partly attributable to my sex). Experiencing sex as a duty and a chore.

Being exploited by salesmen, repairmen, and auto mechanics.

Constant comments from well meaning people of every age, political persuasion, sex/gender, and walk of life about my appearance: whether I'm pretty, how my hair looks, and (now) how young I look.

Expectations that I will provide hospitality

The need to do my hair and makeup for weddings and other formal occasions

Younger people (including Z & E) projecting the role of mother onto me and therefore seeing me as bossy & controlling and as someone who will do the housework.

I'm of mixed mind about "woman talk". There are things I like about it and things that repulse me about it. I think I've adapted so it's hard to remember what repulsed me.

Ways in which I am not a typical female

Love math, logic, science

Not hyper-vigilant about children's safety

Comfortable spending little time/attention on fashion, hair, nails, makeup

If I were given $1 million to live the rest of my life as male, would I? Definitely! In Whipping Girl, Julie Serano states that when she asks audiences this question, only a few "wise guys" say they would. She believes that cisgender people are attached to living their lives in accordance with their sex. But I'm not. Am I really that unusual?

My long list of things I don't like about being female -- were I of a younger generation, would these things seamlessly slide me into a trans identification of some variety? Do young women who are intentionally identifying as cis females (such as K's friend G) also have this list of things they don't like? Is intentionally identifying as cis simply not being hugely uncomfortable with the things I have listed, or is there something positive about it (such as, "in my core I feel that I am female" or something)?

Continuing exploration of morning dread

I have been continuing the morning inner work that I wrote about in my last post, several weeks ago. I have discovered some new things.

Despair around a seeming stall in progress
During one session, shortly after my previous post, I felt that I just could not concentrate. Despair arose. This seemed like many other times when I'd tried something new, seemingly made delightful progress, then inexplicably lost the new ability and/or lost the delight. For example, when I was partner dancing in the 1990s I repeatedly would find a partner I resonated with, then, after several evenings, would find that the partner really irritated me. When practicing samadhi meditation intensively, at first I seem to go deep and experience joy, but this is hindered by physical tension after a day or two, even though when I first learned this type of meditation ten years ago I practiced intensively for well over a week and went deeply enough to experience jhana. Finally, also around ten years ago I discovered some instructions in The Anatomy of Yoga that allowed me to easily bend over and grasp my toes, straight-legged, when I hadn't been able to for decades. This seemed magical and I showed off to my physical therapist. The instructions worked for several weeks or months, but then they didn't work anymore, and they still don't work. I can just barely touch my toes, but cannot grasp them.

So despair set in regarding my morning exploration. After some time it occurred to me to be with the despair. This was really hard to do! It seemed 10x as difficult to be with the despair than it had been to be with the initial thoughts and sensations. After a day or two, however, the despair dissipated, and I was once again able to hold my attention on the initial thoughts and sensations.

It only occurs to me now that this is a tremendous success! I only barely noticed it at the time, I think because I have a deeply rooted habit of dismissing success. When the despair arrived, I was quite sure that the ability to explore thoughts and sensations had been lost, if not forever, then at least for some years.

Somewhat of a tangent, but closely related: this morning my initial guide from Liberation Unleashed, Christiane Michelberger, posted a video wherein she gave advice for people who feel they are stalled in the process of awakening (me!) and who have a mental habit of not recognizing personal success (me!). She advised developing a new habit of recognizing success, including small successes such as getting out of bed in the morning. I've been doing this today.

Sadness, anger
I have found that often, beneath the initial layer of thought ("this is a waste of time" "I don't know what I'm doing") there is sadness and/or anger. These typically arise for only a second or two. The sadness manifests as sensation in the throat and chest. The anger manifests as tingling in the right arm and side of the torso, as though I am preparing to fight someone. Both emotions are seen as unacceptable. Thoughts arise that I must not allow others, including my partners E and Z (who are typically in bed beside me), to know that I am experiencing these emotions, and that I must keep my attention on others to be sure they are not reacting badly.

Fear of having been wrong
Over the past several days I have sometimes reached a place where I discover a great fear of adopting a new point of view, because I am afraid of knowing that my old point of view was wrong. When I explore this, I see that the fear is great, seemingly almost untouchable. The idea that my current point of view could be wrong seems just awful. To admit having been wrong seems like death.