Holiday

Plans are firming up to take my mom to my cousin’s memorial service next month. My father gets a pass, because he will be recovering from cataract surgery. So our party will consist of me, my sister, her two children, my mother, and my mother’s Alzheimer’s, which is so intrusive, it needs its own suitcase.

Last night, I went over the plan with my parents–well, with my dad while my mom looked on:

  • The dog and I will stay overnight with them and help my mom pack in the evening.
  • The next morning, the dog will stay with my dad, and I will drive my mom & I to an out-of-town airport (cheaper flight) at the asscrack of dawn.
  • We will meet my sister and her two children at the airport and fly to a city close to the rural memorial service.
  • We will get in about 9:30 AM, rent two cars, and drive to the beach. (My mom loves the ocean and doesn’t get to see it much.)
  • Burial service that afternoon, memorial service the next day.
  • We are all staying in an Air BnB, along with my weird uncle.

My mom really struggled with the rental-house concept. “I don’t want to stay in someone’s house,” she said initially. Later, it became clear that she understood the concept of “rooms” only in the context of “hotel rooms,” and she became confused and angry at the thought of my nephew sleeping on a couch.

“He’ll be all by himself?” she asked plaintively, over and over. I think maybe she was picturing him in a hotel lobby. Who knows.

The other problem with this plan is that we know–including the kids (ages 11 and 14)–that my cousin killed himself. But there are some relatives–we’re not sure which ones–who do not know. My cousin’s widow apparently wants to keep up the fiction that an athletic, 49 year old man with Crohn’s disease mysteriously dropped dead, out of the blue, in his own home. Among those who don’t know, and are not supposed to know, are a bunch of kids. So, we now have to have The Talk with my nephew, rather like Jewish parents do with their children about Santa: “You cannot say anything to the other kids.”

My niece is rock-solid, unswayed by peer pressure or a desire to impress. My nephew is more of a joiner, and I could see him divulging if he was trying to impress an older kid, but I think fear of punishment will keep him in check. The wildcard is my mom. She can’t remember anything, including, increasingly, my name. (She often cycles through several possibilities–dog, niece, sister–before remembering the name she gave to me.) She will undoubtedly ask, “What is this?” or “What are we doing here?” repeatedly (as in, every 2-5 minutes) while we are at the burial and memorial services. She will very likely forget that my cousin is dead and ask after him to his father and widow, at his funeral. (This happened at another funeral she attended. It is very awkward.) And she will likely announce, with a parrot-like vigor, “B* killed himself, right?”

She kept doing this last night, as though we were playing trivia, and she finally got an answer right.

“He’s dead, right?”

“Yes, Mom.”

“And he killed himself, right?”

“That’s right.”

The show “Roseanne” (which I LOVE) got many things about family life exactly right, including what it is like to deal with elderly relatives in times of grief.

If you have this exchange more than a few times, all of the appropriate emotions–shock, horror, grief–get displaced by frustration, irritation, and a fervent desire to end the interaction. Thankfully, I don’t think anyone has told my mother the circumstances of my cousin’s death: he shot himself with his own gun a few hours (not the next day, as I first thought) after being released from a psychiatric hospital. His wife found him when she got home from work.

(If you’re wondering what kind of psychiatric hospital releases an in-patient with suicidal thoughts into his own custody, without even notifying his spouse, when there is a gun in play, the possible answers are: A) The one my cousin was in hours before he shot himself; B) The one I hope his widow sues the fuck out of; C) Both A and B.)

When you really sit with it, the horror is breathtaking. Maybe I should thank Alzheimer’s for turning my cousin’s suicide into just another incidental detail, like who is running for president or what Mom needs at the drugstore. My mother writes information like this down on sticky notes, and we find them everywhere–on mirrors, lining every cabinet door, inside every pocket. There is no emotion with it, just cold information: “Cough drops, Shampoo, B*’s death. Suicide. Need paper towels.” And, just like a Post-It, none of it sticks.

If a tree commits suicide in a forest, and no one ever talks about it, did it really happen?

The irony here is that the silence and stigma surrounding my cousin’s suicide is mirrored perfectly by the silence and stigma surrounding my mother’s dementia. My cousin’s wife feels that it is disparaging of her husband’s memory to acknowledge that the pain of his depression and Crohn’s, braided one into the other, eventually became too much to bear. And my mother is mortified that she has committed the grave sin of contracting a fatal brain disease, while my father is in denial about her cognitive abilities. Just last night, he excoriated her for not knowing what kind of coffee–regular or decaf?–she put in the coffeemaker. Of all the things she cannot remember–who’s dead, where she lives, whether she has grandchildren–he thinks that’s information she’s got filed and ready for retrieval??? Regardless of the context, my mother’s condition is a Dirty Family Secret.

My sister is coming around to the idea that we should be more open, even with strangers, but she treads more lightly than me. I am pretty upfront about it, if my mom isn’t within earshot, because people are kinder and more helpful if they know what’s up. Like, for instance, the post-op nurse who kept giving instructions to my mom, but not also to me, about caring for my dad after his hernia surgery. Or the ladies we lunched with at a friend’s birthday party, who treated my mother like furniture because they didn’t know what to make of her inability to remember the finer details of the table’s smalltalk.

Gate agents, flight attendants, waitstaff, funeral guests…together my mother and I will run a gantlet of socially awkward encounters perched always on the edge of rage. This trip is shaping up to be one of the longest, strangest weekends of my life. Only the walk on the beach will afford a moment’s rest and contemplation, when the sound of the waves drowns out the yammering questions brought forth by my mother’s disease.

And the brisk winds focus her attention on seashells and grandchildren and the gorgeous feeling of bare toes in wet sand.

And the vastness of the sea brings all our little tragedies down to size.

 

Suicide is preventable. It should always be taken seriously. If you need help, or know someone who does, call 1-800-273-TALK (8255) anytime, 24/7. http://www.suicidepreventionlifeline.org/

Grace

The last 24 hours have been trying, to say the least.

Yesterday, my friend and neighbor Damon passed away suddenly–accidental overdose–at age 23. Damon lived two doors down from me, just 16 feet away. He died in his friend’s house, just five doors, or eighty feet, in the other direction. I have never seen so much grief confined in such a small space.

I am friends with Damon’s whole family, though it is complicated. His mother was my friend Ana, whom I wrote about in an early post, and whose death two years ago simply gutted me. Damon, her youngest son, struggled mightily after she died, though he had struggled long before that too. Damon’s father sexually assaulted me in February of last year, and I did not set foot in their home again until yesterday. Damon’s sisters, with whom I am friends, have no idea about the attack, though I know they became aware of their father’s obsession with me. We never talk about it. Their father leaves me alone, but I sometimes catch him staring at me. The look of hate in his eyes chills me to the bone.

And then there are the girls, three of them, and the little boy–ages 14, 11, 8, and 2. They are Damon’s nieces and nephew. They help me in my garden, I take them for walks, we do crafts and sing songs. I love them. My concern for them was a large part of why I never filed a police report. (I also was under the impression the father/grandfather was moving home to Central America.)

As I said, it’s complicated. And that made a terrible day all the more trying.

Yesterday I held a shuddering, sobbing 8 year old on the sidewalk and coached her into deep breaths and a happy memory of her uncle. Yesterday I listened to an 11 year old girl tell her friend about seeing her uncle’s lifeless form, all purple and swollen, because he died alone and no one found him for hours. Yesterday I heard a 2 year old boy, a child I have never heard utter a coherent sentence before, say “Damon dead” over and over and over to no one in particular. Yesterday I watched a solemn procession of family members, dozens of them, file past my house on their way home after watching this boy’s body get carted off by the coroner, a full six hours after 911 was called. And then last night, after midnight, I walked my dog and looked up at the house where Damon died. The front window was alit, shades up, revealing the homeowner–a woman in her 70s who still works full-time as a nurse to support the ne’er-do-well, 20-something grandchildren who sponge off of her–mopping the floor where Damon’s body had lay. Her grandson stood there watching her blankly, doing nothing to help.

It was a perfect snapshot of the whole, grim situation of drugs in my neighborhood: powerless young men, overwhelmed and numb, doing nothing while devastated women clean up their mess.

Yes, yesterday was an awful day. And today is not much better.

But, like a lot of awful days, it has provided clarity in three important areas:

1] In this midst of Damon’s tragic death, I am acutely aware that I am not a sociopath, and that I am not emotionally dead inside either. I was really starting to wonder. But no. I am heartbroken. And angry. Because addiction is a vicious disease.

2] I spoke with J* last night, and it was terrible. Something broke between us this summer, and I don’t know how to mend it. I still care for him, still want him in my life, but I find myself increasingly empowered to draw lines and limits, as does he. We’ve both set so many tripwires, there is no longer any safe ground to walk.

3] My family is seriously fucked up! I get confused sometimes into thinking that I’m the asshole and that they are just nice, normal people. And mostly they are. But they have… issues. Let’s call it “emotional rigidity.” Whatever it is, it’s fucked up!

Last night I received an email from my dad, of an email from my uncle, of an email from my cousin’s wife, explaining that my cousin is suicidal, he survived a previous suicide attempt, and he has been hospitalized in a psychiatric unit. Over email, my sister and father decided that the “ethics” of how they learned about this situation superseded the urgent necessity of providing emotional support to my cousin and his wife. That is, they felt my uncle never should have told them, ergo they will pretend they do not know.

But wait, there’s more! In my email reply to my sister and dad, I wrote,

“It’s been a shitty day all around. My friend Damon died of a drug overdose today. He was 23. They don’t make greeting cards for this stuff, they really don’t.”

And both my sister and my father responded to this information… by not saying anything at all. Not “I’m sorry” or “that’s really sad.” Nothing. Not one word. *crickets*

What. The. Fuck.

I ignored my sister & dad’s “decision” that our family will pretend we don’t know about my cousin’s mental illness and wrote to his wife anyway. She has already replied with a hearty thanks: vindication. If Damon’s death points anywhere, it’s toward being relentless in reaching out to one another. I will regret that I did not do more to help him for the rest of my life.

In the midst of this, I am on a deadline for a relatively lucrative writing gig with a publishing house in London. I am behind, and on the brink of being fired. I got email from my editor today demanding, “Where is this? and “Where is that?” Today I wrote to Damon’s sisters, I wrote to my cousin’s wife, I hugged sobbing women, I raised money for funeral costs, I sat with a neighbor going through chemo. A young man lay on the sidewalk, weeping inconsolably, outside my house this morning.

It feels like there is a hole in the world, and all I have is words to fill it.

So I’m sorry, mean English editor lady. I’ll write for you tomorrow.

 

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.

 

In Lieu of Flowers

This weekend I attended a funeral visitation for a friend’s son, who died suddenly last week. Suffice it to say, if there are Lego toys in your casket, you are gone from this life too soon.

My friend and I attended together. I was reluctant to go, because I worried that the value of our presence for our mutual but distant friends would be outweighed by the emotional disturbance it would create for us–cryers, both–in an otherwise peaceful weekend. Better to reach out to the grieving parents in a week or two, to see if they want to get together, I suggested. We can go, so we should go, my friend countered. When you’re stricken with horror and helplessness, showing up to represent the collective good wishes of people at the outer edges of a community of grief is both an honor and a duty.

She was right. We went.

The receiving line was long, which gave us time to adjust to the fact that we were going to see the body of a 10 year-old boy. I never knew him in life, except as pictures posted on Facebook, so seeing him in death did not take my breath away as it has for others whom I knew personally. But still, it was surreal and simply awful. Living children have luminous skin that seems to glow from the inside, and their cheeks and lips burst with color. There is no way to replicate those features of youth on a dead child. There is no way a dead child can ever quite look at rest. A dead child can only look dead, or perhaps like a statue. What we saw, effectively, was an artist’s rendering of a boy, composed of embalming fluid, waxes and fillers, heavy makeup to conceal the violent effects of the accident that killed him, and the boy’s own little, lifeless frame. It was strange and sad and nothing I ever need to see again.

His family was good natured and kind, patiently receiving the condolences of guest after guest after guest. The boy’s grandfather held our hands and said something about “God’s plan.” We nodded kindly in assent. But silently, I thought what I always think when someone invokes God’s plan after a tragedy: God is a bad planner. Seriously. Show me a military tactician or city engineer or marketing strategist who says, “This brings us to Step 4: Killing a Random Fifth Grader,” and I’ll show you an idiot and a psychopath. Finding meaning in a child’s death after the fact doesn’t make that death an operational necessity. Any decent, productive plan would have all of the 10 year-olds survive to become 11 year-olds. But of course, the chilling truth is that there is no plan, and no god probably either. There is just the terrible physics of car versus kid, in which a second’s difference either way would have yielded a different outcome: an uneventful excursion, maybe some broken bones, or even a different mother’s child being life-flighted to the hospital. One second.

After twenty minutes or so in line, our friends greeted us warmly, almost as though we ran into them in a restaurant, not a funeral parlor ten feet from the body of their only child. I have never seen a woman look more tired than this boy’s mother.We laughed and made small talk. Someone said something about “under better circumstances,” and I replied stupidly, “This is shitty. This is a shitty thing that happened.” She laughed, looked me in the eye, and nodded. Because it is.

A lot of people invoked the “there are no words” trope in their online condolences at the death of this boy, but I think “shitty” is pretty good for describing a senseless accident, a tiny corpse, some Lego toys buried in a casket, and childless parents comforted only by their memories.

Songs from the Heart

My heart cried out, “I miss my friend.”

It was one of the purest emotions I ever felt: crystal clear, exquisitely painful, and easily translated into words. “I miss my friend.”

Last May, my friend M* died of cancer, diagnosed just nine months before. What is the difference between a memory and a dream? I’m not sure. I had memories of sitting on a porch laughing with M*’s wife and our friend C*, the funny foursome we used to be. And I had a dream of revisiting those golden moments on a different porch, after they all moved away. M* died, the dream died, and the memory became tinted with sadness.

“I miss my friend,” my heart cried out, as I explained to other people who he was and why the world should mourn him. Someday maybe I will try to explain it here.

But today, and most days, I just miss my friend. M*, but others too.

I miss pouring a stiff drink and working my way to the bottom while talking on the phone to my friend from grad school. Now, thanks to the miracle of Facebook, I haven’t spoken to him in years. Instead, we play Scrabble–for 8 years straight–and the sum total of our discourse is, “Nice bingo!”

I miss my friend picking me up in her obscenely American muscle car and driving around town smoking cigarettes from the stale pack she kept in the glovebox. We still meet for “date nights” every few weeks, and I love them, but there was something great about back then, when we lived in a smaller town and had loads of free time and the best days unfolded spontaneously.

I miss stopping by my friend’s office and convincing her to go outside and throw a disc with me in the grass, even though both of us were wearing skirts. Now she works in a fancy building with a security desk. It would take hours to get there and park, and there’s nowhere to throw a disc in that concrete wasteland anyway.

And so many others. My heart cries out, “I miss my friend.” I wish they lived closer, I wish we were closer, I wish we had more time.

For good or bad, M* led me back to J*. I was so close to being done for good, because I had grown accustomed to thinking of J* not as a friend but as a memory–someone I used to know, someone I used to care about, someone who had caused me a lot of pain, someone who would not be allowed to do so again. But when my heart cried out “I miss my friend” in the wake of M*’s death, I realized I had heard those words before. It was the exact phrase J* texted me about 10 days after we broke up. I was struggling to function. I asked how he was doing.

“To be honest, I miss my friend!” was his reply.

Four months later, I heard my heart speak those exact words. I reached out to J* again.

“You were right,” I texted him the day M* died. “I am never going to see my friend again.” (Having worked with critically ill patients, J*’s assessments of M*’s condition were always maddeningly rational.)

“I’m sorry,” he replied. Over the next few days, we met, we met again, he texted and called to check on me. It was kind and necessary, because I was falling apart. Over the next few months, we pieced together a very odd friendship. Despite all the baggage of our previous relationship, despite him moving away, despite both of us being totally nuts, it endured.

I saw J* today. He texted, we made a quick plan, we met up, drove around, talked. It was everything I miss about friendship now that I’m in the throes of middle-age: intimacy, spontaneity, simplicity, fun.

It made my heart sing.

 

First Date Friday: General Longing

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We were just two friends having a friendly drink at the bar. At the time, I did not understand what was happening: I was with a man looking to cheat on his wife.

We met at a conference a few weeks prior. I was in my third year on the tenure track and still in that hopeful, terrified stage of a young academic’s career. A dear colleague of mine was very ill. He was a mentor, a kind and encouraging dad-like presence at my job, who also happened to be nationally known in our profession. We knew he was in the hospital, and we were on tenterhooks awaiting word. His prognosis was not good, and yet we were hopeful. No matter how cynical, how cerebral we are, hope stirs us. But often we only realize its supreme presence in our lives when it is finally gone.

I was in the airport waiting to board a flight to a conference when I got the email. My colleague was dead. I was sick at heart and considered hopping in a cab and going home. But then I thought about what he would want for me, about how much he believed in me, and how foolish he would regard any maudlin displays of grief. I got on the plane.

This was one of those conferences that’s by invitation only, there were fancy people there, and it was all paid for–a real boon to the CV for a junior scholar trying to make her name. When my flight landed, there was a guy with a sign with my name on it waiting for me, just like in the movies. We were ferried around like that for a couple of days, staying in a nice hotel, then being driven to various sites for tours and talks and dinners. It was, professionally speaking, a Big Deal.

Unfortunately, I was not in quite the right frame of mind to capitalize on the opportunity, which began with cocktails and dinner in an upscale steakhouse, the kind whose bar is filled with leather chairs with brass studs and oil paintings of cowboys. I am shy and introverted by nature, so a party at which I don’t know anyone is challenging. Make it a party that’s 90 percent men, most of whom are middle-aged or older, in a professional context, and you’ve created my nightmare scenario. Normally I handle such situations by clinging to a wall, carefully observing, and spending lots of time in the ladies’ room. It gets you nothing, but it costs nothing too. In this case, though, I was still in shock over the death of my friend, so I tried a different coping strategy: booze.

I am a lightweight, and it only takes two drinks on an empty stomach to get me drunk. By dinner, I was pretty toasted. I barely spoke to my table mates and focused instead on the many challenges of not looking drunk. I struggled to stab those pesky cherry tomatoes, chasing them across my salad plate with my fork as the guest speaker droned on. The little tabs of butter in foil wrappers likewise befuddled me. It’s a wonder I didn’t require stitches from trying to cut my steak.

Eventually they herded us back onto the shuttle bus for the return to the hotel. I was so eager to leave, and so disinterested in talking to anyone, that I was first to board. I took the front row, the one with an expansive view of the road, and rested my head against the window as the other conference goers filed past the empty seat beside me. Despite myriad alternatives for seating, a man sat down next to me. I stirred from my reverie to acknowledge him.

I don’t recall if there was an opening line, but I do recall a moment where I felt like I was standing at the edge of a canyon and thinking, “What the fuck do I care? I’m gonna see if I can make it across.”

He was an officer in the Air Force, about 50 but fit as hell, handsome, and clean cut, like he had been poured into a mold labeled “ideal white masculinity circa 1960.” He was wearing a natty suit and projecting just the slightest air of nonchalance. I could smell it.

“I’m not really into this conference,” I said. “I feel like I am somewhere else.”

It was an enormously risky thing for me to say, because no one was wearing name tags. I did not know who was who at the conference, meaning I had no awareness of who could help–or jettison–my career. Showing human frailty in that situation was an invitation to judgment, not just of me as an individual but of all women in my field, who labor against the usual offensive stereotype that emotions cloud our reason. And it was personally risky, to display that kind of vulnerability. Rejection, even from a total stranger, only serves to deepen the well of loneliness we are drowning in.

On the other hand, I am also aware that when you are brave enough to reach out, fate often provides a person willing to reach back. I learned that lesson in the most powerful way years before, when I was in graduate school. I was going through a horrific breakup that taxed my ability just to breathe, let alone keep my teaching job. One day I taught my class, returned to my department for office hours, and found my recent ex–the one I had been living with after four years together–and his new girlfriend–the one he had cheated on me with–flirting loudly in another office two doors down. I shut my door so I would not have to hear their voices and promptly dissolved into sobs. Just then, in the midst of a silent hyperventilation, there was a knock at the door. Delusional in thinking that my ex had come to comfort me, I opened it with a rush. Instead, it was one of my undergraduates. He looked shocked to see the person he regarded as his “professor” standing there with hands full of Kleenex and a face wet with tears, smudged mascara, and snot. I was horrified. I tried to compose myself and do the right, professional thing.

“Um, I was just… Come in!” I opened the door wider and stepped aside so he could enter, but he didn’t move. “Please,” I coaxed. “Come in.”

“No,” he said. “It’s…ok.”

There was an awkward pause while he stared at me and I stared at a spot on the wall somewhere behind him. Mortified and beyond recovery, tears continued to pool in my eyes and trickle down my cheeks. I don’t remember much about this kid, other than that he was Joe Average Undergrad, a white, middle class boy of privilege who, from my vantage point at the podium, was no different than the rest of his peers–that is, totally preoccupied with binge-drinking and shirtless volleyball. (This sounds a little like I went to grad school at Top Gun University. I assure you, it was just a regular university.) But then he said something that made me think, “My god, out of all the kids that could have been standing there when I opened this door on my actual, crumbling, embarrassingly broken state of mind, it can NOT be an accident that it was him.”

“No, really, it’s ok,” he explained. “My sister died last year. She had cancer. And it was really hard. Sometimes I would just fall apart…” His voice trailed off. I don’t remember all of what he said, but I know he said, “So I understand,” even though he never asked why I was crying. After what he had been through, he was wise enough to know that it didn’t matter. Before he left, he also said, “Don’t worry, I won’t say anything about this to the other students.” Which was exactly the fear that shook me when I opened the door and saw him standing there–that I would return to a classroom full of sniggers and undermining comments. Such is the workplace dynamic of the young female instructor when students equate authority with age and masculinity. Instead, his words freed me to focus on caring for myself, and they showed me that there are decent people in this world, at precisely the moment when I was losing faith.

Now, a few years later, grieving the death of my colleague and feeling overwhelmed by my precarious professional situation, I was sitting on a bus revealing my vulnerabilities to a total stranger.

“A friend, a colleague of mine, he died today. I found out right before I got on the plane,” I explained. “So I’m not really feeling  present at this thing.” I gave a halfhearted wave at all the suited people nattering enthusiastically behind us.

“I understand where you’re coming from,” he said. “My daughter died last year. I know that feeling, of not really being where you are.”

I offered my condolences and asked what happened. His daughter was in her early twenties when she was killed. She was embarking on a career in the Air Force, following in her father’s footsteps, and learning to fly. There was a training accident, a crash. She survived, but with horrible burns. She spent several months in a burn unit at a VA hospital, disfigured and in agony, alternating between hope for recovery and for relief from the pain of this world. During that time, her dad–this gentle gentleman sitting next to me–took leave from his duties to tend to her. He told me about how close they got, and how it changed him. He was politically and socially conservative, with a strong religious upbringing that he had conferred on his children. His daughter was a good girl, he told me, but she was also an empowered young woman who had boyfriends and adventures that were supposed to be just part of the catalog of experimentation we all acquire before we settle into ourselves. Instead, they were all the life she had to reflect on at the end, and so she shared it with her dad–all of it. He said it was uncomfortable at times, that dads don’t want to know all the risks and sadnesses and illicit triumphs their daughters experience, but that he felt privileged to learn about her true life and to be there with her at its end. She died while he was holding her hand.

He conveyed all of this to me, and I listed intently, over the course of a thirty minute ride back to the hotel. His grief was towering, and mine so small in comparison, just like the kid outside my office back in graduate school. But, just like that kid, he never made me feel diminished, which is the mark of a kind and knowing person. Instead, he made me feel understood. And I think he liked being around me, because I reminded him not so much of his daughter–she was about a decade younger than me when she died–but of the freshness young women exude, like a warm breeze scented with flowers and watermelon. Young women are unaware of it, of course, because they are usually conditioned to criticize and hate themselves. But men–especially older men, especially men with daughters, especially older men with daughters they will never see again–are absolutely intoxicated by it.

usaf uniform
What else can you say, if you see a man you’ve been laughing with wearing this suit with a doofy blue captain’s hat, and he’s standing next to a bus, besides, “Will you be driving?”

The mood lightened as we debarked from the bus back at the hotel, and we settled into a pattern of wry banter that carried us through the rest of the conference. He asked me to join him for a nightcap at the hotel bar, but I demurred. The next morning, he was waiting for me at the door of the bus as we boarded yet again. This time, he was in his Air Force uniform, a blue suit with lots of embellishments that made him look like a 1950s bus driver. I made a joke to that effect, totally unaware that this is a common dig made so frequently at Air Force officers’ expense that it is effectively a cliché. But come on–they really do dress like bus drivers from the 1950s! It wasn’t until later, when we received the program and everyone at the conference was seated in front of their fancy place cards, that I realized he was a general in the United States Air Force, and a multi-star general at that. Looking back, my youth, my vulnerability, and my lack of deference to his rank were probably an alluring combination. (I also had a bangin’ body back then.) But at the time, I was totally oblivious.

The conference finished with little of note, but the general and I did exchange phone numbers to keep in touch. Work periodically brought him to my city, and he said he would give me a call the next time he was in town.

He did, a few weeks later, and we met–just two friends having a friendly drink at a friendly bar. At the time, I did not realize that he wanted to sleep with me, and perhaps neither did he. It was all very chaste. There were some hints in his compliments to me, of course, but most of the evidence lies in the negative space of what didn’t happen after. He never called again.

We met, I thought as friends, and I reiterated that on the date. Over a drink, just one, we chatted about how “totally normal it is,” to have friends of the opposite gender, with a big age difference, who live in different cities and meet quietly from time to time. Totally normal. I was wary enough to ask pointedly about his wife, and he told me a little about her. They sounded like a great couple, I said, and it would be nice to meet her next time.

Had I flirted, had I been silent about his family life, had I put words to the unspoken chemistry between us, I think it might have gone differently. But in terms of what did happen, there was really, truly, nothing untoward. We stood together at the precipice of an affair, and then we went our separate ways.

I suspect he didn’t really know why he was there either, though the crisis within his family had clearly led him to me. I suspect he realized, when he saw me for that second and final time, that we would never quite be able to recapture the simple elegance of our original connection–two strangers sitting quiet and still, alone but together with their grief, while the world spins on and on around them. I suspect he realized, as we talked, that the fresh breezes that waft from young women are best appreciated at a distance.

 

 

 

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.