In the dark

I choose to dwell in the dark with the monsters.

I came here because I wanted to understand how people could be monsters. People turn in to monsters sometimes. Not the crazy people or the serial killers: just normal people. They have enormous fights in their families. They get drunk or use drugs. They kill themselves with cigarettes. They sit unmoving in front of the television. They fight family or close friends. Families sue each other over the parent’s will. They fight over the stuff or over mother or over who will take care of father. They disown each other. They say “I only let nice people in my life.” That leaves me out. And I don’t want anything to do with anyone who says that. That is monstrous. Do they turn the other cheek? Do they love their neighbor as themselves? No. They are monsters.

I kept studying the monsters and studying them, until I found my own. I rescued mine from a deep hole. The monsters were babies. They were filthy and frightened and crying and abandoned. I washed them and diapered them and fed them and wrapped them in blankets. They stared at me, sullen. They had no idea how to respond to being cared for. I had to learn to love them. I loved them right away, even though they were monsters. I cared for them and they grew up, loved, happy, adults.

And then I see the monsters in other people. People hide their monsters, stuff them in dungeons, neglect them, deny them, scream at them. The monsters realize that I can see them and they start crying. “Help us! Please! Let us out! We are cold! We are hungry! We are neglected!” I learn not to talk to the monsters until the person is gone. The person may never talk to me again if I acknowledge the monster. They think I am the monster. I’ve reminded them of theirs or named them! Most people hate it. I learn, slowly and painfully, that I can only talk to the monsters after their people leave. The monsters hang around. They tell me their stories. They tell me their misery. I hold them while they cry, heads in my lap, howling and breaking things. But eventually they have to return to their person, to their jail, to their suffering.

I like the monsters better than the people. Some people wear the monsters on the outside. Veterans, almost always. To keep people away. They come to clinic and try to scare me. This is very very difficult because I like the monsters. I am delighted to meet the monsters. This is startling and the veteran promptly calms down. I am not afraid. I like the people who wear their monsters on the outside: they are not hiding them. It’s the ones who hide and abuse and torture their monsters: I do not trust those people. And I feel huge grief and sorrow, pity for their monsters. I can’t fix them. The people must each turn to their own monsters. Let them come to consciousness. Face them, comfort them and at last, love them. And this is hard. It is very hard. It is a life time of work. It is emotional maturity. It has nothing to do with educational level. It is hard work worth doing.

I choose to dwell in the dark with the monsters. Because they need me most of all.

Blessings.

blackberries

The blackberries are still out. I took this yesterday at Fort Worden, after I locked my keys in my car. I called a friend, who was kind enough to rescue me. I had a clicker with me, but it too was locked in the car! I retrieved the second clicker from home. Whew. It was beautiful again yesterday but I ended up not doing a beach walk.

For Cee’s Flower of the Day.

Navigating disability

I am having an interesting week regarding disability. Maybe it will make me a curmudgeon.

A woman says, “It must be difficult to be disabled, with your lungs.” I wear my oxygen to sing in chorus. I did the concert without the oxygen but had to drop some held notes at the end. I get goofy when I am hypoxic. I also write really strange rhyming songs when hypoxic, which I recorded.

I reply, “Well, my mother and father and sister are all dead, so by comparison I am doing well.”

She looked horrified. “ALL DEAD?”

“Yes.” I said.

Mother at 61, father 75 and sister at 49. Cancer, emphysema, cancer. I am so lucky that I don’t smoke and have always disliked sodas and thought that addictive things were very dangerous for me before I started college.

I also attended a Roam Echo Telemedicine yesterday, about Long Covid. WOW. It was EXCELLENT.

https://hsc.unm.edu/echo/partner-portal/echos-initiatives/long-covid-fatiguing-illness-recovery/

Yesterday’s program was given by an attorney, discussing disability. She was describing how the chart notes can damage a patient’s chances of obtaining disability and she gave us forms to help us document disability successfully.

She put the number of people with Long Haul Covid at 30% of the not hospitalized people.

Thirty percent. That is HUGE and damaging. I have heard numbers from 10-30%.

There were also physicians attending the Roam-Echo program who have Long Covid and are realizing that they can’t work to the level they did before. Some can’t work at all.

The panel recommended neuropsychiatric testing if the patient is having any trouble with memory or executive function or brain fog. Document, document, document.

Not only that, the previously taped programs are linked to the site above. So I can watch the rest of them. It is FREE and I get Continuing Medical Education from it.

I trained in Family Medicine from 1989-93 in medical school and residency 1993-96. When I was in school I got virtually no training on how to do disability paperwork. Or even how to tell if someone is disabled. The truth is that people do not want to be disabled. In our culture it is shameful and anyhow, social security disability is often $1000 per month. Try living on that. Unenviable.

It turns out that I am lucky or smart or some weird combination. I bought disability insurance way back in medical school and paid $1000 per year for 29 years. I used it twice before 2021. I was on bed rest for 3 months of preterm labor. My insurance doesn’t kick in until I have been off work for 3 months. I wrote them a letter and said I expected to return to work six weeks after having my child, unless there were complications. The company paid me for an extra week. I called them and basically they said, we are so happy to have you return to work that we do not care.

The second time was after my third pneumonia. Strep A and my lungs and muscles were trashed. Both burned like strep throat. It hurts. I was out for six months and then worked half of my usual for another six months. Really I was working about 1/4 of a regular Family Practice Physician. I was seeing 4-5 patients a day and then sleeping for 12 hours, exhausted. A “normal” load is 22 or more. Which is not really sustainable with today’s complex patients, but that is another essay. I had chronic fatigue, MECFS, as it’s now called, but I was in denial. I never got past 8-10 patients a day for the next seven years. I was also running my own small business and had continual hostility from the only hospital in the county. I was one of three independent practitioners. I really do not understand why they thought my tiny clinic was a threat, but whatever. They could grow up.

From 2014 to 2021, I asked any patient with upper respiratory symptoms or a cough to wear a mask for the visit and I masked too. I explained that if I got a fourth pneumonia, I would be disabled for Family Practice medicine. I hoped it wouldn’t happen. I masked the people with allergies too, because after all, you can have allergies AND a cold. When Covid-19 hit, my patients just rolled their eyes and wore the masks. I only ever had one man, a new patient, object. “I won’t wear a mask,” he said.

I said, “Sir, you don’t have to. But I won’t see you without a mask, so please leave and go to Urgent Care.” This was in my waiting room.

“You mean that!” he said.

“Yes I do. I get pneumonia, so that is a firm policy.”

He put on the mask.

I closed the clinic in early 2021. Covid-19 hit us too hard and we were a shoestring clinic anyhow, with 8-10 patients a day. I went to work in the next county. I kept walking into patient rooms where people had their masks off. I had pneumonia in five weeks.

So it goes.

My disability insurance is paying. I did have to hire an attorney to get the company to explain the policy rules clearly. I don’t speak legalese, I hate it, and I think that insurance companies will use any loophole they can find to get out of paying. So far I am lucky to have navigated this. Now I have to look over my policy again, because some policies change after two years of paying and they don’t have to pay if you can do ANY paid employment. It’s pretty clear that I can’t. I went for a beach walk yesterday and then crashed for a two hour nap and then slept 8 hours last night. Any labor, walking OR brain, will crash me. ME-CFS sucks. I think we will have a handle on it in another decade and it’s clear that it is an immune system response. Too late for my employment, though. Ah, well. I got 30 years in. I was annoyed because I was NOT planning to retire yet. I keep running in to people who say, “How do you like retirement?” “I didn’t retire. I am disabled by my fourth pneumonia and grumpy about it.” “Oh,” they say. I should do the social thing, “Love it!” but I’ve never been good at that anyhow. I joke that I tell the truth because I am often not believed, so why bother to lie?

At any rate, 10 or 30% of the people who have had unhospitalized Covid-19 is a huge number of people, and we do not know how long Long Covid will last or how to resolve it. Stay tuned. I hope it is less than a decade, but it will be a little while yet.

Prayers and blessings for all.

The photograph is the really beautiful agate I found yesterday. For the Ragtag Daily Prompt: curmudgeon.