It’s weird to not know for sure.

Let’s back up.

On Monday, in preparation for an endoscopy, I have a Covid test. It didn’t hurt, exactly. Instead, my body was hyper-aware that something was in a place it should not be. Thus, my body tensed up and freaked out. My eyes watered cause my sinuses were irritated–and I felt weird for a few hours.

But the test came back negative.

So I was cleared for yesterday’s procedure.

I have severe GERD, exacerbated by a hernia. I have bile reflux too. These problems, combined with a family history of esophageal cancer, mean we need to check me every few years.

The severe GERD meant they had to fully sedate me–they wanted to intubate. That meant, unfortunately, that everyone else in line for the procedure got to go first. It was a fasting test, so I just lay there, getting hungrier and thirstier for a few hours.

When they finally took me back, my IV line got jerked around a lot. My arm is still in bad shape. Also, who IVs on the TOP of the hand? The dominant hand?

I woke up with a sore throat, naturally, and got dressed. When I looked down at the hospital bed, I saw a wet spot. There was no smell or color, but my panties were a bit wet too.

Thus, like all classy ladies, I threw them in my bag and tried not to Sharon Stone anyone when I was getting wheeled out to the car.

Today, I’m wiped out, and my throat is still killing me. And it hurts to type, so I’m going to stop and take the rest of the day fully off.

But so far my panties are dry.

And I’m in my new tank top.

It’s extremely difficult for me to stay in any semblance of “shape.”

I’m already overweight, and I’m my 40s.

I’m disabled.

Right now, I can’t go to PT, to the chiropractor, to the massage therapist.

I’m not getting my bursitis treatment or the injections into my herniated disc that I need.

But I’m trying.

I keep going on walks–to be healthy, to maintain (if not lose) weight, to lower blood pressure.

I can only do it in the mornings because of the heat, which means giving up some of my most productive writing time. But I’m still going out.

It’s Spring, and I’m allergic to trees, grass, weeds, etc. But I’m still going out.

Today, my sacrum is locked. My hernia is pressing on my sciatic nerve, my bursitis is flaring, my knee freaks out when I pivot left (the other one is going numb for some reason), my ankles keep turning.

But I still went out.

And just as I was getting to the inevitable point when my walk becomes a pathetic hobble, a neighbor pulled up in a car to tell me to go inside.

“There’s a bear somewhere around here!”

C’mon, universe!

I don’t know if anyone else got pulled out of class to talk about their essays. It was the beginning of the term, ninth grade. Our history teacher gave us a warm-up free write–what were we afraid of?

I should have said sharks.

But I had written about the end of the world.

HBO’s 1981 documentary/movie, The Man Who Saw Tomorrow, about Nostradamous, is partially to blame. The image of the man who will bring about WWIII, turbaned and entering a room through a Star-Trek door, is imprinted deeply in my mind.

I’d also been reading the Bible. I was trying to understand the religion I was being raised in.

My essay included a detail from the Bible–about how God would not spare anyone, not even women heavy with child. I’m not sure why I picture her running away from earthquake fissures, but I do. My small Conservative town had many people in it who thought abortion was the worst thing you could do (our town had one of the first abortion doctor murders). God, though, was willing to take the life of that unborn child.

We were all fucked.

My history teacher told me I didn’t have to worry about fleeing God’s wrath while pregnant.

My apocalypse fears didn’t go away, of course. I just talked about them less. My long-term boyfriends knew about them; my long-term therapist did too. Mostly because of the nightmares.

One of my boyfriends, when I was ending our relationship, tried to use this fear to persuade me to stay. “You’ll need me if there’s an apocalypse. And I would protect you. I would kill you before I let someone rape you.”

Note: People can survive rape; it’s not the worst thing I can imagine. It’s up there, but not the worst thing. Something happening to my child is the worst thing.

Also: The smart thing to do would be to use their distraction to figure out how to get us out of there.

Of all of my nightmares, one is the most vivid. Something had happened. I needed to pack a backpack and go, never to return. “How many underwear?” I remember thinking. I started to pack my pills, all the drugs that keep my alive. In my dream, I stopped packing and sat down beside the backpack on my bed. It was useless to flee; I was going to be dead in a month.

I woke up.

Therapy did help. The nightmares lessened.

Not surprisingly, I’m being triggered right now. In between the panic of having to get Winter quarter graded and keep my semester classes going, now online, and rearrange the whole way I teach for Spring quarter, and fears about the economy tanking so badly that I lose my job, I’m having lots of intrusive thoughts.

“What if this is the last time I have ice cream?”

These thoughts do not lead to a mindful enjoyment of any given experience.

I don’t know how to end this post.

I don’t know how things like this end.

I may have walked a few too many miles than I should have on Thursday, but I love walking in the Quarter, my old haunt.

Yesterday, as I set out for the Pharmacy museum on a sunny day, I didn’t see a big hole in the sidewalk, and I sprained my ankle. I hobbled on–and got to rest at the museum (which was amazing–more later).

About two blocks after leaving, I rolled the other ankle, badly. Luckily, I was within a couple of blocks from the theatre where I was going to spend the evening. Later, I took a Lyft home.

Today, I’m going to try to do the WWII Museum. I don’t want to stay in bed all day, though that seems to be exactly what my ankles want.

They are both swollen and bruised (from where they hit the sidewalk when they rolled). They are painful to touch, which means they are shoe-averse.

I have my cane with me. And I’m gonna lure myself out with the promise of more seafood.

Americans who want a single-payer option are often told horrible things about how such medical programs work around the world.

“You have to wait for procedures,” they say.

I get injections in my skull and neck to help prevent migraines. I’m supposed to get them every three months, but when I try to schedule the appointment, I can’t, because the doctor’s calendar isn’t open.

They always promise they’ll call me, but they never do. Instead, they assign me an appointment time and mail me a “reminder,” which is always the first I’m hearing about it.

Yesterday, I learned that I would have to skip the first day of UCD Spring classes if I were to keep the appointment time they chose. I called, but my doctor is booked until six weeks later. He is going to try to scold me about going almost five months between treatments.

If he wanted me to see the migraine specialist again, the wait time would be nine months.

Americans with insurance often have to wait for our care. Americans without insurance usually can’t get on a calendar at all.

I don’t like the term self care.

I know a lot of young people who use it, expecting that the responsibilities they’re shirking will just go away if they use it (or mental health day) as a code word. And then I have to be like, okay, but your paper was still due last week.

It also strikes me as a fairly privileged thing to say. When poor people take time for themselves or buy themselves that coffee as a treat, we call them lazy. We tell them they wouldn’t be poor if not for that coffee. We begrudge them necessities (you don’t need a phone! a car!), so of course we don’t tell them to take care of themselves, except when we’re saying we won’t be helpful at all; then, it’s a harsh command.

But maybe I just don’t like the term because it doesn’t motivate me to take care of myself.

It’s so hard to relax that it stresses me a little to think I have to do it.

Over the years, though, I have gotten better at it. A little.

I remind myself that I’m the machine that has to keep working. This machine needs food, exercise, sleep, rest, friends.

Part of what’s hard is that my schedule changes every ten weeks, so I have to recalculate each term–when can I commit to walking? How can I get enough sleep when I have an early class and a late one (and those other three)?

But I’m trying to make positive changes.

I’m taking myself to more plays and movies.

Some days, when Thoth comes to me and asks me to lie down with him, I give in. (He asks by climbing on to the back of my desk chair, moving down to my lap, and then trying to climb up the front of me.)

I’m realizing that I need a day each week when I don’t have anything social to do–hopefully one in which I don’t teach, either. On this day, I will be able to really focus on my work, so the days that follow are easier.

I need more sleep than I’m getting. So I need to get to bed earlier. I’m going to have to say no to things that keep me out late. This will make it difficult to do some of the cultural stuff I love, to see some of the friends I love.

But I’m bone tired and achy all over, and I gotta keep getting through the day.

I happened to be reading Dr. Nadine Burke Harris’s book in my neurologist’s waiting room. He was running late, so I had an hour and a half to take it all in.

Harris is interested in how the effects of childhood trauma follow people into their adult lives, causing chronic and acute illnesses and a shorter life span.

Childhood trauma is measured via the ACE score–a 10-point test to determine how fucked up your childhood was (a point for a dead parent, a point for witnessing your mother being abused, etc.). The score on the test I found online a few years ago, at my doctor’s urging, was 8. The one Harris uses has me at a 7.

Harris notes that there are also cultural childhood adversity problems:

“In rural white communities, the story is about loss of living-wage work and the fallout from rampant drug use. In immigrant communities, it is abut discrimination and the fear of forever being separated from loved ones at a moment’s notice. In African American communities, it’s about the legacy of centuries of inhuman treatment that persist to this day–it’s about boys being at risk when they are playing on a bench or walking home from the store wearing a hoodie. In Native American communities, it is about the obliteration of land and culture and the legacy of dislocation. But everyone is really saying the same thing: I am suffering.

“It is easy to get stuck on your own suffering because, naturally, it is what affects you most, but that’s exactly the mentality that is killing black people, white people, and all people. It perpetuates the problem by framing it in terms of us versus them. Either we get ahead or they get ahead. . . . the science shows us that it is not us against them. In fact, we all share a common enemy, and that common enemy is childhood adversity” (195).

I knew some of the science, but reading it all at once was difficult:

“Twenty years of medical research has shown that childhood adversity literally gets under our skin, changing people in ways that can endure in their bodies for decades. It can tip a child’s developmental trajectory and affect physiology. It can trigger chronic inflammation and hormonal changes that can last a lifetime. It can alter the way DNA is read and how cells replicate, and it can dramatically increase the risk for heart disease, stroke, cancer, diabetes–even Alzheimer’s” (xv).

“A person with an ACE score of seven or more has triple the lifetime odds of getting lung cancer and three and half times the odds of having ischemic heart disease, the number one killer in the United States. If a large study . . . came out tomorrow saying that exposure to cottage cheese tripled your lifetime chances of cancer, the Internet would break and the dairy lobby would hire a crisis-management firm (40).

I have to say, I don’t like my odds.

But like all good books, this one’s stories moved me, scared me, most. One of the patients Harris describes is severely under weight. Something bad happened, and he just stopped growing, stopped thriving.

I don’t remember a lot of things that happened to me early on–my mother wanting to leave my father for his constant womanizing, his giving her a black eye, her fleeing with baby me.

My grandparents often told a story about when I came to live with them when I was 2. I was so small that they took me to a doctor. My grandparents were told that I was okay, but that I would be a tiny thing. But they didn’t believe the doctor, who said I would never make it to 5′. So they gave me small quantities of beer to increase my appetite and milkshakes filled with eggs.

And I wasn’t actually okay. All of a sudden I had life-threatening asthma, requiring frequent hospitalizations.

By the time my grandparents took me in, I was failing to thrive. I somehow hadn’t made that connection before reading this book.

What shook me most, though, was reading about all the studies showing that loving, stable homes can help people recover from trauma.

And I thought about another story my grandmother liked to tell. Their tiny little me was unconscious, and they couldn’t wake me up. They were packing me into the car for the hour trip to the hospital. Grandma saw (Grand)daddy packing his pocket with cigars and asked what he was doing.

“They’re going to want to keep her overnight. And I’m not leaving her there alone.”

And that was why, thinking about the loving, stable home my grandparents tried to give me, I cried in my neurologist’s waiting room.

Many years ago, I was in a writing group, but I felt strange saying so.

I was having a hard time calling myself a writer.

Imposter syndrome is very well documented. In this case, it was pretty absurd.

I had several publications, and I wrote in all kinds of genres. I’d even had a play produced at a festival, before I went to college.

But saying “I’m a writer” felt wrong.

I don’t know what I was waiting for, exactly. It certainly couldn’t be to make my living just from writing–being able to do so is incredibly rare.

Talking about my fear of presumption, though, with the other writers, made that fear go away.

“Writer” has been on my business card now for quite a few years.

Now, there’s another term I’m uncertain about.

This week, I’ll be asked to fill out demographic information for UCD.

Do I check “disabled”?

Last night, I performed at the anniversary Invisible Disabilities show.

I have an hour long one-woman show on being a chronic pain patient.

I relied on my cane for more days than not during my last two trips. And I’m relying more and more on pain medicine to walk and to sleep, especially now that another disc has herniated. I average four body appointments a week; I’m never not in physical therapy for some body part or another.

Many aspects of my life are compromised.

But the word seems strange.

Is it because my disabilities are usually invisible?

Is it because I know I’m luckier than most disabled people?

I’m very scared about my future a lot of the time, but for now, I can usually get through the day.

When I figured out I had fibromyalgia when I was in my twenties, my best friend (a med student) told me not to take on the label, that doctors would refuse to take me seriously.

The word still isn’t in my chart. I asked my pain doctor about it two years ago. “Well, obviously you have it,” he said. “But I don’t want to put it in your chart.”

“Why?”

“Too many of my patients use that diagnosis, that word, to just quit. They decide they can’t work, that they can’t get better.”

That’s not me. My goal has always been to be functional. My workaholism won’t let me do anything else.

But I needed “fibromyalgia” to understand what was happening, even before we really knew what it was. That word meant I wasn’t crazy, despite what some doctors might have thought.

(And now that we know it’s about having more pain receptors than normal people, it explains so much.)

Maybe I’m afraid of this word because I’m afraid of being seen as a fake. I went back to work only six days after my first major back surgery (five weeks and a day before I was supposed to). I had a temporary disabled placard, since it hurt so badly to walk far.

The first day I used it, there was a cop waiting for me when I returned to my vehicle. Someone had called to report a perfectly healthy woman who was obviously lying.

I showed the officer all the paperwork; I even offered to show him my still-bright-red scar.

But I didn’t use the placard again.

It’s 20 years later.

It’s time to reconsider–not getting the placard (I don’t need it yet). It’s time to reconsider my relationship to this word.

I am disabled, if often invisibly so.

If I do let myself use it, I want it to work for me. I want it to be a weapon I can use against my workaholism, against the voice in my head that says I’m worthless when I’m not working.

I want to take myself and my pain seriously, and to cut myself a lot more slack. My workaholism makes my pain, my disability, worse every day.

I need to find a way to rest more.

I haven’t touched up my gray hair in three weeks, and I can tell. I was sitting here, after working on syllabi all day, trying to figure out when I was going to be able to do so before I head out of the country for a conference on Friday.

Tomorrow, I give my car to the mechanic, give my mind to teach a class, and then give my body to the pain doctor for a procedure to put anti-inflammatory stuff into the herniated disc (and hopefully not my spinal column).

This procedure to relieve pain is, ironically, very painful, so tomorrow’s out. And then in the three days remaining, I have to teach some more, prepare for the three additional classes that start the second I get back, have four other body appointments and a few other meetings, pack, do all the misc stuff like letters of rec and bills, book group, and book group night out to see Atwood’s fathom event. I’m also fielding some Atwood-related interviews.

And I haven’t even celebrated my Simpsons’ book being out yet!!!

So a little voice just said, “why not skip dyeing your hair for a while?”

It’s been many years since I wrote this blog about why I have been dyeing; maybe it’s time to change my mind.