Please Hold

Today I finally awoke under my own roof, in my own bed, after a whirlwind series of emotional and travel adventures. This morning, I ventured outside to walk the dog, I made coffee, and then the three of us–me, the dog, and an enormous slab of wedding cake–promptly returned to bed, where we have been ever since. Yes, I know it’s a Tuesday. But after the ten days I just had, I am taking a Sunday instead.

As my previous post indicated, my dad’s “routine” eye surgery resulted in a catastrophic outcome that took two ophthalmologic surgeons and an anesthesiologist totally by surprise. It was like driving to the grocery store and running over an IED–devastation, horror, and total shock. Suddenly, my mother’s primary caretaker was both physically incapacitated and emotionally devastated, though he was too stoic to show it overtly. My mother is slightly more demonstrative (sarcasm!), and she swung violently between compassion for my dad, fear at an uncertain future , and indiscriminate anger at various people–me, my sister, even my dad–for various infractions–patronizing her, being disrespectful, taking the front seat of the car. That last perpetrator was my dad! Returning home after two days in the hospital as a newly one-eyed man, he had the audacity to try to take the front passenger seat. (He is 6’3″ and she is 5’3″, so where she gets the idea that she should sit up front like the Queen of France, I do not know.) My mother was so focused on her own victimhood, and also having to pee (despite my sister begging her to go before she got in the car), that she completely forgot the nature of the task at hand: driving my dad home from the hospital.

Thanks, Alzheimer’s!

It took days for the New Reality to sink into her memory, and even now she routinely forgets that my father only has sight in one eye. He can’t bend over due to concerns about the pressure in his eye. He can’t see out of one eye, so his depth perception is fucked up, undermining his ability to perform routine tasks. His meds have been changed, and his tremor is worse, so sometimes he can barely feed himself. He can’t drive. He is in pain. And for days, his eyelid and surrounding tissues were swollen and black. Not the red and purple people mean when they say “a black eye,” but LITERALLY black. The sclera (white of the eye) is still cherry red, and he literally weeps blood. And my mother looks him right in the face, without recognition of any of this, and chastises him for not being able to help her pick specks of dog food off the carpet or go to the store to get her the right kind of cereal.

Fuck you, Alzheimer’s!

My dad’s surgery was on a Thursday nearly two weeks ago. My sister called with The News about 3 PM, and it’s been crazy ever since. I packed myself in 10 minutes, drove across town to drop the dog at my parents’ apartment, then pushed on to the hospital, where I stayed with my mother until 10 PM that night. The next day, we were back at the hospital by 9:30 AM, an epic feat considering that Alzheimer’s has completely ruined my mother’s executive function. She cannot plan and complete a task, so the simple request that she dress herself and eat some cereal drifted into efforts to clean the apartment, organize a cabinet, and repair a tear to the newspaper. It’s like having a toddler, but a toddler who weighs 130 pounds, knows they are legally an adult, and can push your buttons like nobody’s business.

We took my dad home that night, and I stayed over to attend to him. The next day, my sister and I worked in shifts, which enabled me to escape for a bit. I went to my friend’s bridal fitting, and then we visited a mall to buy makeup like Fancy Ladies. We are bad at malls, and I will write about this excursion at some other point. $260 worth of makeup later (WTF!), I headed back to the loony bin to spend another night with my folks.

I spent Monday & Tuesday grinding out a big project, Wednesday I got caught up on the anatomy of the heart and blood vessels for the class I’m taking, and Thursday I had an all-day meeting in the city. Thursday night I went back to my folks’, stayed over, then left Friday morning at the crack of dawn to fly to New England for my cousin’s funeral. Two days of celebrating my cousin’s life, crying at his grave, and catching up with extended family, then back on the plane to fly home. (More on this later.) I went straight from the airport to my friend’s open house on the eve of her wedding. Then back to my parents’ apartment, where I had stashed the dog but was also supervising my dad’s care. This brings us to Sunday.

My friend married the love of her life two days ago, and it was a wonderful day from start to finish. I had some drama with my parents in the morning but was finally able to extract myself around noon and head to my friend’s house to help with wedding prep. It was a day of firsts–I made my first bridal bouquet and my first groom’s boutonnière, and I did my first-ever bridal up-do. It all came together beautifully, though thankfully the bride’s aesthetic was “you tried hard, and it will look good from a distance.” The party went late, as all good parties do, and I finally arrived back at my parents’ apartment at 2 AM yesterday. I awoke about two hours later in extreme pain. The booze I consumed at the wedding must have anesthetized me from feeling the damage I was doing to my body by being on my feet in peep toe stilettos for 8 straight hours. My toes looked like sausages, my feet and ankles were swollen and sore, and I felt like I was 150 years old. As of today, the swelling is down in all but two toes, but those little piggies remain completely numb.

Bad at malls, also bad at high heels!

A few more hours of fitful sleep, and then I was up and out, Ubering to retrieve my car across town, running errands for my folks, assembling post-wedding flower bouquets for display at my parents’ retirement home, walking their neighbor’s dog, and then finally

finally

finally

driving myself and my pup HOME.

As an introvert, I need a lot of downtime after being around people in emotionally charged situations, whether they are sad or angry or exuberant and joyful. I have had all of these in the last ten days, and I am spent. The list of creatures I can stand to deal with is currently counted on one hand: my dog, a few dear friends, and another piece of wedding cake.

Everyone else: Please hold.

I will be with you shortly.

 

Twist

I was so worried about the possible return of my dad’s melanoma (biopsy result: negative) that I never saw it coming: the routine, outpatient cataract surgery.

It’s never good when your sister calls, and the first thing she says is, “Dad is still alive.” Because if that’s the metric by which you’re measuring good news, then the news is gonna suck.

My dad is a cardiac patient–never had a heart attack, but his brother has had two. My dad takes a blood thinner, blood pressure medication, and a statin for cholesterol. I learned recently that he walks around with nitroglycerin pills. A doctor I went on a first-date with described my dad’s complex of pathologies as a “ticking time bomb.”

The bomb didn’t go off, but it did start hissing and steaming right on the operating table. My dad’s BP spiked partway through the procedure, and a blood vessel burst in the back of his eye, forcing the eyeball forward and causing a bunch of delicate tissues to shift and collapse. The surgeon did something, and then he did something else, and then he had to snip some teeny ligament and stitch his eyelid closed. I can’t quite recall all the details. They packed the eye with gauze and put a big clear plastic bandage over it, like a window, so you can see the swelling and bruising peeking out behind the gauze. As I rushed to the hospital (I was on second shift, supposed to spend the night with my parents and drive them to the routine followup appointment tomorrow), I texted my sister to see if she’d seen him and find out how he looked.

“Like hell,” was her answer. She was not exaggerating.

They admitted him, and he slept most of the day. While he was sleeping, my sister mentioned that she thought no one had actually told him his prognosis. She had been there since 6:30 AM, so she left after about 13 hours, and I did the late shift with my mom. She had a million questions, and every time we told her, it was emotionally wrenching because the Alzheimer’s wiped her memory clean every goddam time.

And then my dad finally woke up, and I fed him grapes and jello, and he started asking questions too.

Today I had to tell my father that he is very likely blind in one eye and may never drive a car again. I only had to tell him once. I must have told my mom 20 times.

This is my new baseline for a shitty day, I think.

J* told me once that hospitals are full of families who never thought they would be there when they woke up that morning. Today that family was us. I am grateful my dad is cognitively ok, that he did not have a heart attack or stroke, and that he still has one good eye. That is not the standard by which I originally planned to measure this day, but I suppose it’s good enough going forward.

Plot twist indeed.

The Bridge

bridge-burn

Bridges have so much poetic potential, and yet they terrify me. I do not fear falling; I fear jumping. This impulse is common enough that it has a name, “The Call of the Void,” which sounds real and literary but also a bit like a high school metal band. My fear extends a little past the usual uneasiness, however, because the times in my life when I have been suicidal, it was the height and accessibility of bridges that romanced me. When I felt that pull, it was such a relief to realize that I could simply avoid them.

At present, though, I live in a city that requires me to cross a bridge frequently. It bothers me not a whit and, in fact, I am very good at navigating the complex merge that devastates the flow of traffic. For now, anyway, bridges have ceased being an imminent threat and are usually just a means of conveyance.

I am here, I want to be there. The bridge allows me to make the journey.

Bridges connect. Musically, the bridge allows us to return from the chorus for another verse. In paintings and photographs, bridges provide focal points and perspective. And they make great metaphors. Thornton Wilder won a Pulitzer for writing about a bridge, in the novel The Bridge of San Luis Rey. I love that book, and that bridge, so much that I quoted its last lines, in a nod to my mother’s dementia, during my parents’ 50th wedding anniversary toast:

Even memory is not necessary for love. There is a land of the living and a land of the dead, and the bridge is love, the only survival, the only meaning.

Fundamentally, a bridge of any kind spans a divide. We build them, we connect. We burn them, we sever ties that cannot be resurrected.

All my life, I have tried to build bridges, to connect, to make friends and find love. And yet here I sit, on my little island, sullen and resentful as I toil in my lonely job and return home to an empty house each night. And, truth be told, I am pissed off that I didn’t stand up for myself when I should have, that I allowed other people to dictate my terms, that I appeased when I should have fought, that I lingered when I should have walked away. I was so conditioned in childhood to “choose my battles wisely,” so concerned about “dying on the wrong hill,” that I gave up the fight long ago or directed my enmity at the wrong people altogether.

Now, I have arrived at midlife, tired and foolish and well stocked with matches.

In the last ten days, and for what reason I’m not sure, bridges have been crossed, terms set, matches struck. I threatened to walk off a project–and away from a much needed paycheck–because the editor was pressuring me too hard about a deadline. I threatened to cut ties with my FWB for creating a dynamic that no longer works for me. I put my father and sister on notice that my participation at family gatherings is optional and dependent on respectful treatment. And just today, I told J* off for insulting me.

How did it all work out? Mixed results!

The editor caved and offered reassurances that I am indispensable to the project. My FWB called me for the first time ever (we only text or meet in person) to apologize for his behavior. Time will tell if anything is truly going to change with him. My sister wrote me to apologize for her mistake, but there’s been no word from my dad, who has always quoted John Wayne in “She Wore a Yellow Ribbon” on the subject of apologies: “Never apologize. It is a sign of weakness.” And my sister’s apology doesn’t change the fact that I feel the need to disentangle myself from my family as a whole in order to preserve a shred of self-esteem. I can already tell, the holidays are going to suck extra hard this year.

And what about J*? I did a fantastic job of calling him out, except that he didn’t actually insult me; I insulted him. I manufactured a conflict and lobbed some grenades because I was angry and hurt at something he told me about another woman, in a conversation the night before. They dated, and it didn’t work out, but they are still friends, and he is going to visit her later this summer. She’s 18 years younger than me, with doe eyes, creamy skin, and a tender heart that makes him want to protect her.

“I have to remember that I hurt her,” he said gallantly. “So I need to be sensitive about her feelings.”

He could fuck this girl into the next century, and all her hot young friends too, on a bedspread emblazoned with my ugly mug at its ugliest, and it wouldn’t bother me as much as that statement. Because he also hurt me, repeatedly, and yet he exercises no similar sensitivity about my feelings. In fact, he shamed me brutally for wanting to cut ties after he rejected me, talking me out of my own efforts to spare further injury to my broken heart. This girl is beautiful and desirable, vulnerable and valuable, and no one wants her feelings hurt–including me. And I guess I am some swamp rat garbage callus held together with barbed wire and toenail clippings, like the glob you leave at the bottom of the trashcan for the sun to burn off, or an object of strange familiarity you slow down to ogle and then blow past on the highway. Nothing that warrants special handling, that’s for sure.

I was not exactly thrilled with this realization, so I picked a fight about something else the next time we spoke on the phone. I was driving across a bridge at the time, doing my best to navigate the merge. I hit him where it hurt, touching off our usual cycle of vitriol, self-recrimination, ultimatum, and apology.

There was nothing but flames in the rearview mirror by the time I was finished. And I felt nothing but sadness as I approached the far side of the bridge, more alone than ever.

Mother Day

It is called Mother’s Day.

Not Mothers Day, not Mothers’ Day.

Mother’s Day.

Its modern American founder, Anna Jarvis, campaigned to make Mother’s Day a national holiday in the 1910s, and she went so far as to trademark the phrases “second Sunday in May” and “Mother’s Day” as she did so. The position of the apostrophe was quite deliberate. “Mothers Day” implies celebration of mothers en masse or the concept of motherhood in general. “Mothers’ Day” implies a day for mothers as a collective. Ms. Jarvis wanted a day on which individual families would convene to honor their individual mothers, giving the holiday a distinctly individualistic and personalized flavor.

It’s a lovely idea. But that apostrophe is also responsible for a lot of angst, especially in the age of social media.

While I have dedicated no shortage of space on this blog to complaining about my mother (I know, it’s so original), I have always observed Mother’s Day with, at the very least, a card and a phone call. Since my parents moved nearby three years ago, I have also endeavored to give my mother meaningful experiences for Mother’s Day, whether she will remember them or not. (She doesn’t.) Today, for example, my sister, my niece, and I took my mother to a local botanical garden for a long walk in gorgeous weather, then out to lunch at a local market. I gave her a handmade card, and I spent $50 on Korean tacos. The only deficiency in this year’s observance was my failure to give her a handmade card from the dog. She didn’t notice, because she had the actual dog. At one point on the walk, they both laid down in warm grass with yellow flowers, and my mother laughed and laughed as the dog lolled beside her. It was nice to see her happy when she is in so much pain.

I have never minded performing these rituals, and I still don’t. What I mind is the public performance of Mother’s Day on social media, which has metastasized into two virulent strains of observance. I don’t know which one I find more upsetting.

women give birth
You know who else shapes lives? Teachers, mentors, aunts, serial killers…

First, there is the posting of updates, links, photos, and memes that celebrate one’s own motherhood. At 44, I still have many friends and relatives who are in the early years of motherhood, and some of them feel the need to exclaim, loudly, about how it has shaped their lives. Goody for them! But attendant with these declarations is a sometimes implicit, sometimes explicit, conflation of womanhood with motherhood. Variations of “I didn’t know what it meant to be a woman until I became a mother” have saturated my Facebook newsfeed on Mother’s Day for the last few years.

rights of women
I dunno, the writ of habeas corpus is pretty good too…

From the perspective of the childless woman–whether due to infertility, the death of a child, not finding the right partner, or not wanting to be a mother–the only appropriate response to this pastel narcissism is, “Go fuck yourself.”

The other offending strain of Mother’s Day observance is entirely inoffensive, and yet, somehow more hurtful. It involves the posting of updates, links, photos, and memes that declare one’s own mother to be the best mother. Today, fully 95% of my Facebook newsfeed consists of photographs old and new, with declarations of love and thanks to mothers for what sound like magical childhoods. Profound sacrifices, shared confidences, shared adventures, unconditional love–these are the themes that animate my friends’ posts.

mothers-day-quotes-10
I’m guessing these people’s mothers did not invoke the spectre of homelessness every time they suggested trying something new.

I am glad for them, that their mothers embodied the ideal. But I am left wondering, too. Are their mothers really that great? Or are my friends just better than I am at presenting a happy face to the world? Am I the asshole here?

Families are mysterious organisms, and because we spend our lives enclosed within perhaps just one or two, it is hard to know what is “normal.” Take violence, for example. What is an appropriate amount of violence within a parent-child relationship? All my life, I thought I knew. And then one day, when I was 28 years old, I learned that I had no idea.

Ellen was a new friend, but we hit it off so well that people who just met us assumed we had known each other for years. As new friends do, we spent a lot of time sharing our stories, including those of our families. I don’t remember what I was telling Ellen about my life growing up, but I will never forget the look on her face or the incredulity in her voice when I mentioned something about my mother’s discipline.

best friend
The motto of middle-aged women who shop at Forever 21, rely on their children for advice, and buy the booze for after-prom.

“Your mother hit you?” she asked, as though the concept was completely foreign to her.

I resented the implication that there was anything wrong with how I was raised, so I immediately sprang to my mom’s defense. “Well, no, she would just, you know, like, lose it. And then, WHAM”–I smashed my right hand through the air and tossed my head back to signal the impact–“right across the face.”

In my mind, I thought I was tempering the severity of the outbursts, which were frequent throughout my childhood but also totally unpredictable. My mother did not hit me as rational means of dispensing discipline, because there was no order or predictability to when she would lash out. She hit me when she needed to hit someone. And she only stopped hitting me when I got taller than her, in about 8th grade. One day she went to hit me, and I grabbed her wrist mid-smash. I held her arm firmly in the air, looked her dead in the eye, and said sternly, “If you ever hit me again, I will hit you back.” I was bluffing–I have never hit anyone, ever–but it worked. She never struck me again.

It took another 15 years for me to understand what that meant: there was nothing righteous about her anger towards me; she only hit me because she could not regulate her emotions; there was no perfect way I could behave that would not eventually incur her wrath; and the only way I could make her stop hitting me was to threaten her. My friend Ellen’s reaction helped me to untangle this.

“Your mother hit you in the face!?” Ellen exclaimed, even more aghast. What I thought was a mitigating detail was, for her, the final indictment. Not only had Ellen’s mother never struck her in the face, her mother had never struck her at all. Here, I was thinking my childhood was normal, but to Ellen, I might as well have grown up in Northern Ireland during the Troubles. And to me, her childhood–and especially her relationship with her mother–seemed like a fantasy.

Actually, it seemed like a Hallmark card, one of those with the trifold and the florid script. And that’s why I tend to make my own Mother’s Day cards, because it is so hard to find a store-bought one that doesn’t force a bitter laugh.

I have no idea what is normal. I have no idea what goes on in other people’s families. I have no idea whether people who claim their mom is their best friend (whut?) or their biggest supporter or their greatest source of inspiration are really telling the truth. I hope so! But that’s not my situation. I haven’t spent much time alone with my mother since leaving for college. She is not my friend, and I have learned to carefully tailor the information I provide her about my life. She is sometimes a source of support, but just as often she has undermined my self-confidence and -esteem. She loves me, but not unconditionally.

Still, I am lucky. My mother worked hard to provide a nice life for our family. She taught me to be well-mannered and considerate of other people. She encouraged excellence in school and at work. She never abused alcohol or drugs, and she never hit me with anything other than her hands. She taught me how to take care of elderly parents. If it seems like I am damning with faint praise, it is because this is the unqualified list of traits I can offer. But still–I could have done worse. Much, much worse.

A long time ago, I visited a run-down community museum where schoolchildren’s poetry substituted for actual artistic and historic content. Elementary school students had obviously been asked to write poems about their mothers, and the little scraps of paper hanging on the museum’s walls were silly and touching, as you might expect. There was a line in one of the poems, though, that to this day stays with me, because it so elegantly captures the simplicity and ambivalence of Mother’s Day–and mothers–for people like me:

My mother is my mother

And I love her.

That’s really all there is to it. It’s not the individualized and personalized celebration of one’s own mother that Anna Jarvis envisioned when she slipped that apostrophe into Mother’s Day. But it is honest and sincere. Maybe next year I will post it on Facebook.

5e9ae7c3e1e955ef78f223f2fc4eb41c
I love the wholesome, unsentimental simplicity of this Victorian Mother’s Day card, which suggests both the endurance and insidiousness of a mother’s love through its use of the invasive and virtually indestructible English ivy.

A New World

Last night I got the saddest, scariest email from my dad. My parents were dog-sitting a terrier named Oliver for some neighbors in their retirement community. Everything was going well. My mother took Oliver for a walk, and then she returned to the apartment…

Alone.

I asked her where Oliver was and she did not know what I was talking about. I pressed her, and she vaguely recalled taking him out but did not know where he was or what she had done with him.

When I read this, my heart fell into my stomach. More precisely, I had three simultaneous reactions:

  1. Terror: What the fuck did she do with the dog??? My parents frequently take care of my dog, who is often the only thing tethering me to this life. What is there to keep my mom from losing my dog too?
  2. Vindication: Every time I visit my parents, there is a fight about this very issue. I will not let my mother walk my dog until she proves that she has her cell phone on her and that it is turned on. I am terrified that my mom will get lost and not be able to find her way back. At least if she has the phone…well, let’s be honest, it just means that a kindly stranger who searches her person might be able to call us, because my mom often looks at her phone like it’s a moon rock. Anyway, every time–Every. Single. Time.–it is a struggle to find the phone. We have a locator device for this purpose, but sometimes I have to search the pockets of a dozen sweaters and jackets in the closet before the phone turns up. Meanwhile, my mother becomes enraged at the implication that she is not capable of walking a dog without intervention. She hurls accusations–you think I’m a blithering idiot, you don’t respect me, you don’t love me–but, every time, I stand firm. And every time, I end up feeling like an asshole. Not anymore.
  3. Sadness: Beyond sad. For my mom, for me, but mostly for my dad, who is losing his love of 50+ years one missing cell phone/purse/dog at a time. He sounds so defeated. When I asked him how he felt about her decline, he said, “Well, I guess it’s just part of the marriage deal.”

What happened? He thought she would be ok walking the dog by herself, and he just wanted 20 minutes alone to go to the dining room to fetch their dinner in peace.

I already cannot allow her to go to the dining room alone. She goes with a list that says buy A, B, and C but brings home X, Y, and Z. Or she becomes confused by the menu offerings or gets into an argument with the manager over whether or not corn is a vegetable. Her short-term memory loss seems to be escalating. Today she had no idea what to do with the trash or recycling. Her world is shrinking by the day.

And she knows it. That is the horror of Alzheimer’s Disease. Initially, at least, you know the totality of what you don’t know. It must be terrifying, like waking up stupid-hungover in a strange place with no idea how you got there–several times a day. Being around my mom is kind of like the movie “Groundhog Day,” except that her story doesn’t reset after 24 hours. It resets every couple of minutes, and when it does, she’s lost your dog.

I can’t tell which is the greater fear–that my mom will lose my dog or kill her altogether. My mom likes to sneak my dog people food as a form of rebellion against what she imagines to be my dictatorial rule. But we’re not talking about bits of cheese or meat, we’re talking about slabs of chocolate cake so large they would kill my 12-pound pup. Despite loving my dog immensely, my mom has also looked right at her and said, “Whose dog is that?” One time my mom tried to return my dog to a neighbor’s apartment, but thankfully my dad caught her in time. So, with good reason, I live in fear that I will lose my dog at my mother’s hand. And then I will lose my family, because I will never be able to forgive her for that.

It turns out that Oliver’s owners returned home while my mom was walking him, and they ran into each other outside. Oliver was surely glad to see his mommy and daddy, and my mom enthusiastically handed him over. Then she returned to her apartment–which is a goddam miracle in and of itself, because at some undetermined point in the future, she won’t be able to find it anymore. By the time she rode the elevator one floor and walked perhaps 60 paces to her front door, she forgot not only that she had returned Oliver, but that he had ever existed in the first place.

As far as my mom was concerned, the world was born the moment she walked in the door.

 

A Lack of Emotional Concern

a·no·so·di·a·pho·ri·a

(ă-nō’sō-dī-ă-fōr’ē-ă), Indifference, real or assumed, to the presence of disease, specifically of paralysis. [G. a- priv. + nosos, disease, + diaphora, difference]

I learned a new word today: anosodiaphoria. It is a medical term, not even in the Oxford English Dictionary, that means “indifference, real or assumed, to the presence of disease, specifically of paralysis.” It was coined by Joseph Babinski, discoverer of the famous Babinski, or plantar, reflex in which scraping the sole of the foot determines spinal cord damage. Babinski first noted anosodiaphoria in 1914 in a few paralyzed patients who were all “meh” about their paralysis. Another, more general definition describes anosodiaphoria as a “lack of emotional concern.” A recent medical paper on the subject is titled “Blissfully Unaware.”

My dad and I took my mom to the doctor today–specifically, to the neurologist to receive the results of her annual memory evaluation, an extensive battery of tests performed last week. It was pretty much unnecessary, given what we know:

  • That her mother died of Alzheimer’s.
  • That her sister had early-onset Alzheimer’s and was robbed of seventeen years of life starting in her late 50s.
  • That my mom gets lost and can’t drive a car and can’t remember why (two accidents).
  • That she has trouble forming new memories.
  • That today she asked us at the breakfast table, as we were leaving, twice in the car, and again in the lobby of the doctor’s office, “Now, what is this for again?”

My mother’s neurologist is a young man of south Asian ancestry with luminous brown eyes and a quiet, fastidious mien. He spoke in soft, measured tones, and his approach to delivering news to patients in layman’s terms was studied, as he though he carefully considered each ten-cent word before he said it. His hipster bowtie was flawless.

After addressing my mom’s mysterious dizziness (I’ll tell you about that some other time), he summarized his colleague’s report. Memory exams are administered by a specialist, and the scientific literature has shown a preference for having the same doctor administer the tests over time, such is their subjective bias. According to the neurologist, the exam showed improvement in some areas, decline in others, and stasis in still more. It struck me that he was building to something, but was remembering back to that day in medical school when they explained how using certain words can cause your patients to shut down. “Cancer” is one of those words. “Alzheimer’s” is another.

Last year, this same neurologist told us my mother had “mild cognitive impairment,” but I knew there was nothing mild about her deficits. He described her condition as a “gray area” between normal and not normal and offered hollow assurances that lots of people find themselves there who do not end up with dementia. Today, he was a little more assertive.

Overall,” he said, “there did seem to be a mild trend of decline.”

Such gentle language: the passive voice of “there did seem” rather than “you have.” The uncertainty introduced by the use of “seem.” It’s not a definitive, yes-or-no thing that has happened like, say, getting impaled by rebar that has fallen off the back of a speeding flatbed. Rather she’s just experiencing a “trend.” A trend is a process, a direction, but not necessarily a destination. The cruelly optimistic implication is that trends can be reversed. Furthermore, hers is a “mild” trend, like warming springtime temperatures or rates of marijuana use by senior citizens.

But the neurologist was just warming us up. My mother’s test results now point to “a mild stage of something more progressive, likely some form of dementia.” Whew. That’s a relief! I thought he was going to sell us car insurance there for a second. Dementia, yes, we’re familiar. My mother recently asked my dad if Jeb Bush was president.

Lest we get hopeful, though, he then offered that this form of dementia was likely not of the vascular type. My mom, who did a fantastic job of following along, interjected and asked for clarity about the form of the disease that she does not have. After explaining how some forms of dementia are due to blockages in the vascular system that nourishes the brain, the neurologist finally reached the crescendo of his plodding andante.

“The change in those domains [that she exhibited in her exams] are more associated with Alzheimer’s.”

Well then.

It was the first time that word had been used by a clinician to describe my mother’s condition–the closest we have gotten to the Dreaded Diagnosis thus far. She took it like the taciturn Midwesterner that she is: stoically, silently. As far as she is concerned, there is nothing more to be said, and nothing more to do.

A few hours later, I asked my dad if I could read the report, which the neurologist had promised was written in “accessible” language. That’s when I learned my new word. And that’s when I realized how random and fragile the art of neurological diagnosis really is.

The report found that my mother’s memory did not decline. Great news! Except that her memory was “poor” last year and remains so, as does her learning function. She did experience decline in language (the ability to come up with the right word on queue) and in executive function (the ability to plan, organize, and conduct a task to completion), which I have often summarized as my mother “falling off a cliff, cognitively speaking.”

She asks sometimes about words–today she mixed up “affluent” and “effusive”–but thankfully her ability to her express herself has not yet been compromised. We have noticed the executive function thing, though. That’s when your mom is supposed to be getting dressed for her Golden Anniversary party, a fancy catered affair attended by fifteen out-of-town guests that was months in the planning and has cost thousands of dollars, and the guests have arrived and are all downstairs waiting, and she disappears into the bathroom for too long, and when you find her, everything in the bathroom closet is on the floor, because she started doing her makeup but went looking for a Q-tip, which she has in her hand, and then she got sidetracked somehow, and now she doesn’t really feel like “going out to dinner” anyway.

Her recent evaluation was neurological but also vaguely psychological, in that the clinician endeavored to understand my mother’s mood. Unfortunately, the test was conducted the day after said Golden Anniversary party weekend, when my mother was still high on being around people she loves for two straight days. She did great! The neurologist reported a “confound of any potential mood changes,” and he smiled adorably when he told us there was no sign of depression.

Really.

There was no sign of mood change when my mother raged at me and the front desk lady for no reason on the night of my father’s surgery?

There was no sign of mood change when the anniversary guests were waiting and my mom announced to my dad and me that she didn’t want to go, that she had nothing to wear (she said this while wearing a brand-new, custom-tailored Talbot’s suit purchased specially for the occasion), and that she wished my father was married to someone else so he could take that lady instead?

There was no sign of mood change last night, when my dad and I emptied the kitchen pantry trying to find the dog’s bowls–my mom hides things–and had the audacity to discard her priceless collection of 50 carryout containers and some of the 10,000 cafeteria napkins she’s hoarding, and in response my mom put herself to bed, hilariously fuming, “Fifty years of running my kitchen clearly aren’t good enough for you, so I will never go in there again.” No sign at all?

Not even on Christmas eve, when my mother told me that she thinks about killing herself every day?

Such a relief! And really good to know.

The doctor who did the report also noted that she showed signs of anosodiaphoria related to her condition. My dad and I looked it up together, and we puzzled over its application to my mother’s situation. But on the drive home, I think I figured it out.

My mother can’t remember my name, and someday soon she won’t remember me at all. But so long as she is still herself, she will never, EVER, think that it is ok to disclose the dark thoughts that plague her mind–and certainly not to a doctor, a person in authority, a man. She thinks her dementia is her fault, a terrible, embarrassing failure of her own making. And, while she will admit that it is real, she would rather die than talk about how it makes her feel. Hence whatever it was that she said or did to indicate anosodiaphoria, or “indifference to the presence of disease”: a shrug, a refusal to answer, or perhaps a firm statement like, “It is what it is.”

This isn’t the cheerful acceptance of the green-tea-swilling, yoga-pantsed, meditating Buddhist. No, this is the grim resignation of Ohio farm folk, people who canned their food, darned their socks, and survived barren winters in metal sheds while their babies died of typhus. That’s an actual thing that happened, to my mother’s great-grandmother, but the story’s impact on subsequent generations was profound. There are other stories too–like, the story of how my mother’s grandfather was such a cheap sonofabitch that he wouldn’t let his 40-something year old wife have her baby in a hospital, and he refused to summon a doctor until just before she bled to death. And the half-born baby died of asphyxiation. And my mother’s mother witnessed the whole terrible scene as a girl, and she never told her own daughter, my mom, that she loved her, until the Alzheimer’s devoured the part of her brain responsible for remembering that our people don’t show emotion. Yes, grim resignation is coded in our DNA.

Anosodiaphoria. You could tell, the doctor thought it was curious that my mother doesn’t seem to mind that she is losing her mind. In fact, she’s mad as hell, and since there is no rational place to direct her anger, she takes it out on everyone around her. I feel for her, I really do, at least in the abstract. But in the moment, I often find myself incapable of accessing the empathy, kind words, and genuine emotion I would bestow on literally any other human being in the same situation, up to and including Saddam Hussein.

The reason is because I still can’t quite separate out the fragile old woman my mother is at present from the passive aggressive nightmare she has been all along. As long as I can remember, her default setting is to cast everyone else as her tormentors while she bullies us all into compliance. My whole life, no matter what she said or did, no matter how terrible, I never received a single word of apology from her. And any suggestion that perhaps some elements of my childhood might have gone a little better (or just, you know, my failure to empty the dishwasher in a timely fashion) always resulted in outrageous, sarcastic accusations designed to pathologize any utterance of dissent: “You hate me. You think I’m the worst mother ever. You think I’m a monster.”

It’s a brilliant strategy, actually, because every fight ended with me apologizing. “No, Mommy, I love you, I’m sorry, I love you, I do, I’ll empty the dishwasher right now, I’m sorry, I’m sorry, I’m so sorry.”

At present, this tendency manifests as my mother’s refusal to offer any hint of apology when her memory problems inconvenience other people–like, say, when she compulsively threw away a bag containing $70 worth of hearing aid batteries, or she made me late for work when she hid my car key. Instead, she gets angry at us. We don’t respect her, we don’t care about her, we ignore her–when really, our entire lives revolve around her. My sister says I should pretend our mom has the words “I’m sick” written across her forehead. But what I know is true is that she was sick long before she lost her mind, and I am having trouble forgiving her for that.

Still, I rally. I take time off work, I show up, I eat shit for as long as I can stand it, and then I run away, often after saying something I regret. Then I hate myself for being unable to stay perfectly poised in the exact fraction of a moment where my mother lives, with no before or after, no old wounds let alone fresh ones, as though last night’s Great Tupperware Meltdown and the last forty years never happened.

I admit it, I have become hard. I exhibit a lack of emotional concern. I am indifferent to the presence of her disease.

I guess I have secondary anosodiaphoria, if that’s a thing. But none of us is blissfully unaware.

 

Et Tu, A&P Textbook??

Five days until the start of the new semester, when I will begin Human Anatomy & Physiology I. I am terrified! And a little mad.

My new $200 textbook arrived in the mail yesterday, and I eagerly started flipping through. My initial reaction was horror: HOW WILL I EVER LEARN ALL OF THIS.

And then I calmed down and started to skim the introductory chapter. The first thing that really caught my attention was the concept of the  “reference man” and the “reference woman”–the prototypical humans to which the book will refer in all the lessons.

He weighs 155 pounds. She weighs 125.

What. The. Fuck.

According to the Washington Post, the average American woman currently weighs over 166 pounds, and the average American man tops 195.

I get it, WE ARE TOO FAT. But it seems to me, there’s no reason to low-ball the weight of a prototypical human by that much. How is 155 an easier number to work with than, say, 175 for a man or 150 for a woman?

Seeing the number 125, in particular, stung a little bit, because for some reason that is the number that has hung in my head my entire life as “the ideal weight” for a woman. I suspect that I heard it in health class when we talked about nutrition, and again in gym class when we got weighed (in front of other girls, no less), and that I read it in 1980s fashion magazines. 125 pounds is actually fairly robust on a woman of average height (5’5″), compared to the size-zero ethos of today’s fashion industry. But I’m tall–5’8″–and somehow no one ever pointed out to me when I was a kid that it was normal for me to weigh more than the average girl. I constantly felt–and was made to feel–like I was a fucking monster.

125 pounds on a woman 5’8″ is Scary Skinny. I know, because I once weighed 128 pounds. I looked like a bobblehead.

But somewhere in the recesses of my mind, I can’t shake this idea, that a “normal” woman weighs 125 pounds. Unfortunately, my mother encouraged this thinking.

Here’s an example that is not going to make you like my mom, so just trust me, she’s a lovely person in other contexts.

The summer between freshman and sophomore year–perhaps not coincidentally, the summer that my mother’s father died and that my sister left for college–my mother got it in her head once again that I was too fat. Other moms might think, “My kid is going through puberty, and being a teenager is hard enough. I’ll set a good example, provide healthy options, and let it ride.” But not my mom!

Screen Shot 2016-01-07 at 10.37.06 PM
Trust me, this was a sick look in 1987!

Nope. My mom coerced me into joining Weight Watchers for teens. When I say coerced, I mean that she shamed me for being too fat, she normalized the idea of dieting, she incentivized my participation by offering that it would be a bonding experience between the two of us, and she said I had to do it. Oh, and she bribed me by offering to buy me a chambray denim jumper that cost $55 (about $115 in today’s money), if I made my “goal weight.”

I kept that jumper until about 10 years ago–changed the buttons out, wore it as a skirt, hung onto it well into my thirties. Why? Because I fucking earned that jumper. I suffered for that jumper. Fuck that jumper.

When I started Weight Watchers at age 15, I was 5’8″ and weighed 144 pounds. That’s a BMI of 21.9, smack in the middle of the normal range.

Going to those meetings was awful, because all the other kids in there were genuinely obese. ENORMOUS. And they looked at me suspiciously, probably enviously, because I had the body they wished for. I still can’t believe that a second “responsible adult”–the teacher of the class–allowed me to enroll, essentially legitimizing my mother’s project of giving me an eating disorder. Fuck that lady.

After a couple of months, I reached my goal weight, and I got the jumper. I weighed 136 pounds, which is on the low end of normal.

Eh, what’s the harm?

In between, I was taught to obsessively measure servings of ketchup. I weighed bananas. I weighed myself, as I still do, every day, naked, preferably after I’ve emptied my bladder and colon. I ate dry rice cakes. In anticipation of the weekly weigh-ins, I ate NOTHING. That summer, I denied myself any pleasure from food, all so I could look “trim” (to use the preferred term of the WW “teacher”) in a medium-sized jumper with a sweetheart waist.

By that point in my life, it was clear that I was never going to weigh 125 pounds, so even getting down to 136 felt like failure.

At present, my weight fluctuates between 160 and 165. I am ambivalent about losing weight, because I like to eat and because I have shockingly nice breasts, and I don’t want them to disappear. Many people in my life think it is weird that I fixate on my boobs so much. Part of it is that they are the one feature on which I have gotten consistently positive male feedback. And part of it is that in jokingly appreciating my girls, I am also speaking to a 144 pound, 15 year old kid with freckles and braces and a mom who found a million tiny ways to say she wasn’t pretty enough, and I’m telling her, “It’s ok that you’re tall and you have curves. It might even be a good thing.”

Because when you marinate in a sick culture like ours your whole life, and the people who are supposed to raise you to be strong instead train you to be weak, then you kinda can’t hear it often enough.

So, fuck you too, A&P textbook. Your Reference Woman is too small.

But I know a jumper that would look great on her!